1
A Participatory Action Research Study with
Guyanese Women Living with Type 2
Diabetes in England
by
HELENA ANN MITCHELL
THESIS
Submitted for the degree of Doctor of Philosophy
Faculty of Health and Medical Sciences
School of Health Sciences
University of Surrey
July 2014
© Helena Ann Mitchell 2014
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Declaration of originality
This thesis and the work to which it refers are the results of my own efforts. Any
ideas, data, images or text resulting from the work of others (whether published or
unpublished) are fully identified as such within the work and attributed to their
originator in the text bibliography or in the footnotes. This thesis has not been
submitted in whole or in part for any other academic degree or professional
qualification. I agree that the University has the right to submit my work to the
plagiarism detection service Turnitin UK for originality checks. Whether or not drafts
have been so assessed, the University reserves the right to require an electronic
version of the final document (or submitted) for assessment as above.
This thesis is copyright and may not be reproduced in part or in full without
the express permission of the author or of the University
© Helena Ann Mitchell 2014
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Abstract
People from Black and Minority Ethnic groups, in particular Guyanese people, have
a higher incidence of Type 2 Diabetes. Yet, there is a paucity of research which
explores women's experiences of living with the condition.
In this participatory action research (PAR) inquiry, eight participants and I, ‘we’
researched together for 18 months. Participants were nine Guyanese middle class
women, including myself, who had migrated to England many years ago. The
inquiry aim was to listen to the women’s voices about living with Type 2 Diabetes
and explore associated cultural experiences that could influence self-management.
The objectives were: 1) give voice to Guyanese women stories; 2) explore their
experiences living with Type 2 Diabetes; 3) facilitate a participatory action research
(PAR) group and explore with them self-care trajectories and 4) consider ways ‘we’
(women and researcher) can initiate health care reform at an individual level and/or
within the Guyanese community.
Data generated included storytelling in one to one interviews in the safe
environment of the women’s own homes, followed by 14 PAR group sessions.
Participants drove the research by determining what should go on the agenda and
they decided on the resultant actions.
Fourteen constructs (commonalities in experience) were derived from our data and
the women validated these findings and took ownership of their stories. The main
focus of the PAR group conversations was on their identities as Guyanese migrant
women which were constructed through the food and dietary transitions made over
the time of the PAR group. The group’s social context became a fertile bed for
learning. In terms of living with a chronic illness, improving diabetes selfmanagement was accelerated within the group. Group cohesion and working
together to improve their lives are two of the most important findings. In 2015 the
group continues to meet.
If theory is defined by its practical effects, together we have confronted the taken for
granted meanings of culture, ethnicity and identity as we researched alongside each
other to construct a theory of togetherness as empowerment that enabled a group
of migrant women to bring about change in their lives.
My thesis is that listening to the voices of Guyanese / English women who live with
a chronic illness improved self-management, fostered new understandings of
diabetes and empowered this group to have a say about the health services
received. Through participating in a PAR group, we recognised that we are biculturally competent women and when we connect, we recognise the practical effect
of togetherness as empowerment.
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Acknowledgements
I would like to thank the eight women who participated in this inquiry, for their frank
and honest opinions regarding their Type 2 Diabetes and for allowing me to
research alongside them collaboratively for 18 months. Thank you to Mary Matthias,
the Diabetes Specialist Nurse for her contribution to the group.
My heartfelt thanks go to my supervisors, Professor Tina Koch and Professor Helen
Allan who have made this journey possible for me with their patience, kindness,
ongoing support and supervision. The study has been challenging but I could not
have achieved this without you.
I would like to thank my husband Terry Mitchell who has been with me every step of
the way throughout this entire process and my son Daniel for his encouragement
and support.
Thanks to my colleagues at The Open University especially Julie Messenger and
Professor Jan Draper for giving me the study leave to complete the work and Claire
Edwards, Judith Ffolkes, Victoria Arrowsmith, Eileen Beesley, John Rowe for
supporting me when I needed it and Soraya Tate for her excellent word processing
skills.
A special thanks to all my friends and family in the UK and abroad especially Jassy
Haynes and my sister Sonja Abbott who have been an ongoing source of support
for me throughout the life of this study.
Dedication
I dedicate this work to my father who has inspired me throughout my life. Sadly he
died in 2001.
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Table of Contents
Declaration of originality........................................................................................... 2
Abstract ................................................................................................................... 3
Acknowledgements.................................................................................................. 4
Dedication................................................................................................................ 4
Glossary of Terms ................................................................................................... 8
Chapter 1: Introduction .......................................................................................... 10
My background................................................................................................... 11
Why this inquiry is important............................................................................... 14
Research question and objectives ...................................................................... 15
Overview of Chapters ......................................................................................... 16
Chapter 2: Context................................................................................................. 19
Guyanese women .............................................................................................. 21
UK Context......................................................................................................... 21
Guyana .............................................................................................................. 23
Health Care ........................................................................................................ 25
Type 2 Diabetes ................................................................................................. 34
Chapter 3: Literature Review ................................................................................. 38
Search strategy and terms ................................................................................. 39
Inclusion criteria ................................................................................................. 41
Incidence and prevalence of diabetes ................................................................ 42
Diabetes complications/Factors influencing diabetes..................................... 43/45
Living with Diabetes ........................................................................................... 48
Chapter 4: Principles Guiding this Participatory Action Research Inquiry ............... 57
Positioning of the PAR researcher...................................................................... 58
Action Research ................................................................................................. 60
What is participatory action research (PAR)? ..................................................... 61
Commonalities in participative methodologies .................................................... 62
Rationale for selection of Koch and Kralik PAR process ..................................... 68
Principles guiding PAR and this inquiry .............................................................. 69
Chapter 5: Participatory Action Research Approach .............................................. 72
Research question, aims and objectives ............................................................ 73
Perceived benefits of researching with participants ............................................ 76
Data generation Phase 1 – Storytelling .............................................................. 76
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Data Analysis Phase 1: Developing the story line ............................................... 78
Data generation Phase 2 - Group sessions ........................................................ 80
Data Analysis Phase 2: PAR group process ....................................................... 86
Rigour and evaluation in PAR research .............................................................. 87
Chapter 6: One to One Interviews and Storytelling ................................................ 90
Introducing the women ....................................................................................... 91
Storytelling: Data generation, analysis and reflections........................................ 94
Vera’s storyline................................................................................................... 94
Marjorie’s storyline ............................................................................................. 99
Pam’s storyline ................................................................................................. 104
Bea’s storyline .................................................................................................. 108
Jane’s storyline ................................................................................................ 113
Shirley’s storyline ............................................................................................. 117
Agnes’s storyline .............................................................................................. 121
Jillian’s storyline ............................................................................................... 125
Constructs ........................................................................................................ 129
Chapter 7: Participatory Action Research Groups ................................................ 140
First Session .................................................................................................... 142
Second Session ............................................................................................... 147
Third Session ................................................................................................... 148
Fourth Session ................................................................................................. 150
Fifth Session .................................................................................................... 152
Sixth Session ................................................................................................... 154
Seventh Session .............................................................................................. 157
Eighth Session ................................................................................................. 158
Ninth Session ................................................................................................... 162
Tenth Session .................................................................................................. 163
Eleventh Session ............................................................................................. 168
Twelfth Session ................................................................................................ 172
Thirteenth Session ........................................................................................... 175
Fourteenth Session: Evaluation ........................................................................ 177
Discussion: Fourteen PAR Group Sessions ..................................................... 180
Chapter 8: Discussion .......................................................................................... 190
Consequences of not receiving a diagnosis ..................................................... 192
Self-Management of Type 2 Diabetes .............................................................. 195
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Psychological Issues ........................................................................................ 200
Being Guyanese............................................................................................... 202
Reflection on the inquiry ................................................................................... 204
Feedback to Healthcare Professionals ............................................................. 211
Chapter 9: Conclusion ......................................................................................... 213
Principles ......................................................................................................... 214
As a researcher within this collaborative inquiry have I achieved my research aim
and objectives? ................................................................................................ 214
Reflections on the PAR Process ...................................................................... 216
Key findings ..................................................................................................... 217
Rigour and Evaluation in PAR research ........................................................... 218
Implications for practice including commissioners and practitioners ................. 220
Implications for education and research ........................................................... 222
Key contributions made by this inquiry ............................................................. 223
References .......................................................................................................... 220
Appendix 1. NICE Guidelines.............................................................................. 249
Appendix 2. NICE Care Pathway ........................................................................ 251
Appendix 3. Approval Letter from Ethics Committee ........................................... 252
Appendix 4. Written Information about the Study and Consent Form .................. 253
Appendix 5. Poster ............................................................................................. 257
Appendix 6. Letter to Participants for Interview ................................................... 258
Appendix 7. Participants’ Consent Forms .......................................................... 261
Appendix 8. List of Prompts ................................................................................ 262
Appendix 9. Analysis of Vera’s interview using PAR process ............................. 263
Appendix 10. Significant Statements and Commonalities ................................... 280
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Glossary of terms
Ackee: a national fruit of Jamaica
Amerindians: indigenous population of Guyana
Beech nut: the nut from the tree can be consumed raw or cooked, has a good level
of protein
Bitter sticks: also known as chirata is a herb used for various medical conditions
Black cake: fruit cake made with rum
Black pudding: made with rice, meat and includes celery, thyme, eschallot and
blood from the cow
Bush tea: the dried plant is drunk as a tea for various ailments
Cascara Sagrada: used for cleansing the bowel based on Guyanese cultural belief
Castor oil: used for cleansing the bowel
Cassava: root vegetable (also known as manioc) grown in Central and South
America
Cerasee tea: wild variety of bitter melon used as tea to treat diabetes in the West
Indies and Central America
Channa: fried chick peas
Chow mein: stir fried noodles
Coconut milk: liquid that comes from the grated meat of a brown coconut
Coconut water: clear liquid within the young green coconut
Cook up rice: known also as rice and peas, traditional Guyanese dish
Dhal: an Indian dish made with lentils
Eddoes: small root vegetables
Eggplant: also known as aubergine is an edible fruit
Essequibo: a former Dutch colony in Guyana on the north east coast of South
America
Garlic Pork: a Portuguese dish of marinated pork pieces soaked in vinegar, garlic,
pepper and salt for a few days and then the pork is fried in oil
Georgetown: capital city of Guyana
Karela: bitter melon that looks like a cucumber
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Metemgee: thick coconut based soup filled with dumplings, fish or chicken and a lot
of provisions e.g. yams, eddoes, cassava
New Amsterdam: one of the largest towns in Guyana
Naan bread: oven baked flatbread
Obeah: a folk religion of African origin
Okra: a vegetable also known as lady’s fingers or bhindi
Patties: pastries that contain various fillings (similar to a Cornish pastry)
Pablum: a type of porridge
Pawpaw: also known as papaya is a fruit
Pepper pot: an Amerindian stew
Pitta bread: slightly leavened flatbread baked from wheat flour
Plantains: starchy vegetable that looks like a banana but is cooked before it is
eaten
Pomeroon: a region in Guyana and the name of a former Dutch plantation colony
Roti: fried flat bread
Scott’s Emulsion: is a brand of cod liver oil range of emulsions rich in vitamin A, D,
calcium, phosphorus and omega 3 used to protect children from cough and colds
and as a supplement to support growth and ward off infections
Sugar cake: a sweet made with coconut
Soursop: fruit grown in Caribbean and South America that has antimicrobial
ingredients
Tania: root vegetable
Yams: starchy vegetables grown in the Caribbean
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Chapter 1
Introduction
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This introductory chapter sets out the background and context of the inquiry, and
provides an overview of the succeeding chapters in this thesis. An important aspect
of this inquiry is to recognise and give voice to a specific Black and Minority Ethnic
group (BME) – consisting of Guyanese migrant women who are often subsumed
into a larger categorisation. This Guyanese group is generally referred to as African
Caribbean within the wider BME grouping although it is a distinct cultural group.
My background
I was born in Guyana, a former British colony in South America, and came to
England to commence adult nursing in January 1976. My training was an
apprenticeship model with shift work accompanied by formal lectures. On
completion of training I left general nursing for psychiatric nurse training in 1979. I
practised as a community psychiatric nurse prior to becoming a nurse tutor at
Northamptonshire School of Nursing in January 1988. I have been an academic for
25 years, 15 years at Northampton University and more recently at the Open
University. I enrolled at the University of Surrey in January 2010 to undertake the
higher degree programme, and commenced this inquiry, researching alongside
Guyanese women in the UK who are living with Type 2 Diabetes.
Beginnings
As a member of a family of seven, (three brothers and a sister) I lived a comfortable
life in Guyana’s capital city of Georgetown. My mother was a full time house wife
and my father held a senior position at the city’s power station. Following retirement
he taught mechanical engineering at the University of Guyana.
My parents were keen travellers and I can recall going to New York in 1970 with the
intention of the whole family migrating due to the political upheavals in Guyana,
which will be discussed in Chapter 2. Eventually, however, we all returned to
Guyana for personal reasons.
Education Preparation
I attended a Catholic primary school until 11 years of age, transferring to secondary
education at a Catholic convent school. At 17, I left school with a general certificate
in education and commenced work at a Guyanese Government accounts
department. The tense political situation in Guyana prompted my parents to suggest
that I migrate to another country and join the exodus of young people who were
leaving to go abroad to either study or take up permanent residence. Changing
immigration laws in the UK, Canada and America meant it was becoming difficult to
obtain visas for those countries. In the 1970s a shortage of nurses in the UK meant I
was welcomed as a migrant if I trained as a nurse. I thus accepted a nurse training
position in Surrey, UK.
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My interest in this topic
My interest in the topic of diabetes stemmed from those members of my family living
in Guyana: my sister, niece and sister-in-law, who had been diagnosed with this
chronic condition several years ago. As I return to Guyana frequently, I was
intrigued by their cavalier attitude towards managing their diabetes. I also queried
the extent to which genetic predisposition played a part, as I had read about an
increase in Type 2 Diabetes amongst Guyanese living in Guyana (Ramsammy
2011).
In the UK approximately three million people have now been diagnosed with Type 2
Diabetes (Diabetes UK, 2012). This chronic condition has become a national topic.
In addition, a report by the Department of Health (DH) (2007b) suggests that there
had been a significant increase in Type 2 Diabetes amongst BME communities.
Guyanese people are included in these communities and are often grouped with
African Caribbean people in the UK (Scott 2001; Brown et al. 2007) as they share
colonial roots. Gathering data on the number of Guyanese people living in the UK
has been problematic because Guyanese people comprise six races: African,
Indian, Chinese, Portuguese, Amerindian and Mixed. However, UK statistics tend to
categorise all people from the Caribbean as African Caribbean. Health information
specifically about Guyanese people living in the UK is scarce.
One of my PhD supervisors, Professor Tina Koch from Australia, was in the UK on a
Leverhulme Professorship. In late 2009 we met at a UK conference and started
talking about my evolving research question. I was immediately drawn to the type of
collaborative inquiry she described. I expressed a desire to give voice to Guyanese
people, as I believed they had not been heard. I found that Professor Koch had a
background in participatory action research (PAR) and had co-published a research
text with Kralik (Koch & Kralik 2006). I later read about Koch and Kralik’s chronic
illness research programme and noted that over 30 PAR studies had been
completed and published by them. Their PAR approach was appealing, as not only
would it provide a voice to those living with a chronic condition through storytelling, it
had the potential to be sensitive to specific cultural practices. I continued to read
their body of work and discovered that a researcher spent time in the field to gain an
understanding of the cultural beliefs and practices. Spending time in the field was an
attractive proposition, as I wanted to build relationships with Guyanese people living
in the UK, hear about their social and cultural practices in terms of their health and
find out ways to improve their situation though action initiated by the participants. I
understood that by using a PAR methodology I could research alongside older
Guyanese women. I will explain my gender choice later.
I had accumulated experiences that served to prepare me for this inquiry. I had lived
in the UK as a Guyanese migrant and worked in the field of community mental
health. I am an academic with a specialist interest in feminism and BME
communities.
In the effort to explain the relevance of these experiences I will begin with my work
as a community psychiatric nurse. In that capacity, I had adopted a range of
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interpersonal and therapeutic interventions that had elements of Egan’s (2007)
helping relationship. Many clients shared their life stories with me; I listened, stayed
connected and gave them time and space to talk. Listening skills were vitally
important in those therapeutic encounters but the application of other skills was part
of my practice, like enabling and encouraging individuals in order to empower them
to make their own decisions and to take the necessary actions to manage their
mental health problems. I had therefore gained some insight into the skills that
would be required of me when researching alongside participants in this inquiry.
Secondly, I had completed a Women’s Studies Master’s degree in the 1990s using
the theoretical connection with liberal feminism in the tradition of Olesen (2005). I
recognised that other feminist theorists such as Oakley (1981; 1993) and Haraway
(1991) had influenced my position. These feminist theorists assisted me to think
about power relations, to see the importance of listening to the female voice,
demonstrating the importance of identity and the need to respect the individual’s life
experience in managing a chronic condition.
Thirdly, I was influenced by the work of hooks (1984), a black radical feminist, who
introduced me to a type of feminism that privileged the voice of a black woman. It
was a visionary piece of work that captured the political scene of that era but is still
relevant in today’s society. My Master’s research study was with black women and
explored the reasons why they consumed alcohol. It was guided by feminist
principles; it emphasised being heard and giving a voice to participants.
I believed I could build on these experiences when researching alongside women
from a BME community, who are a hard to reach group. I also shared the same
cultural characteristics in being a black migrant woman. Based on my background
experiences, I wanted to continue this PhD inquiry with Guyanese women rather
than men. The participants were more likely to be older women because Type 2
Diabetes normally occurs in an older age group.
Professor Helen Allan, my other supervisor, has a wide experience in feminist
research approaches. I quickly realised that there is a strong link between the
principles guiding both of my supervisors’ work. These principles complement my
participative worldview focusing on social justice, social equity and freedom of
speech. I would bring to the inquiry a strong awareness of human rights that
encouraged a democratic and collaborative approach to research. It would be an
approach that would equitably involve all persons (facilitators/researchers and
participants) in the research process.
As discussed, there is a connection between the principles guiding feminist and
PAR approaches that include the building of partnerships and the potential to create
new forms of knowledge in women’s health (Ponic et al. 2010). The principles
guiding this inquiry will be discussed in more detail in Chapter 4 and I will further
explain why this connection contributed to my decision to research alongside
Guyanese women living with Type 2 Diabetes.
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Why this inquiry is important
This inquiry gives Guyanese women a voice and provides insights into the way they
manage their condition. I anticipate that listening to their stories will allow them to
provide an overview of their life since migration to the UK and that it might reveal
cultural understandings about living with and self-managing Type 2 Diabetes. At the
same time, I recognise that using PAR requires not just listening skills but also skills
in building sustainable relationships. In this type of collaborative research it is
expected that the researcher will be a co-participant in the process and, like the
participants of the inquiry, will bring a particular set of skills and knowledge to the
group. The idea is that together ‘we’ will explore ways in which the women would
like to improve their lives through action and reform (Koch & Kralik 2006).
This inquiry has the potential to deliver some understanding of the issues beyond ill
health facing this BME group of women. As a Guyanese woman I expect we will
share our experiences about migration and the impact of being the ‘other’ living in
the UK: I refer to being challenged by racism and dealing with discrimination.
Although I travel to Guyana regularly and keep in touch with my family, on a
personal level, I had lost touch with my Guyanese connections in the UK. This
inquiry provided an opportunity to reconnect with them in an objective manner.
I want this inquiry to make a difference. Koch and Kralik’s (2006) work shows that
the PAR process often initiates change and reform, both at individual and
community levels. Doing a research project with the Guyanese women appears to
be a good way to bring about reform.
Harriss and Salway (2008) identify the need to gather more information on BME
groups’ experiences of long-term ill health as they are marginalised from support
services. Guyanese women living in the UK have not had a voice to talk about their
lives as migrants or living with a chronic condition. This inquiry provides them with
such a voice and enables beneficial agency because the PAR process creates a
platform on which participants can express themselves with the potential to lead to
self-initiated action to improve their situation.
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Research question and objectives
My research question is: “How do Guyanese women living in the UK learn to live
with Type 2 Diabetes?”
The aim of the study is to explore with Guyanese women in the UK their experience
of living with Type 2 Diabetes.
The objectives of the study are to:

Give voice to the stories of Guyanese women

Explore their experiences as Guyanese women living with Type 2 Diabetes

Facilitate a participatory action research (PAR) group and in collaboration
with participating women, explore self-care Type 2 Diabetes trajectories

Consider ways ‘we’ (women and researcher) can initiate health care reform
at an individual level and/or within the Guyanese community living in the UK.
I selected Koch and Kralik’s (2006) PAR as the most suitable tool for answering my
research question because it involves both listening to people living with chronic
conditions and stimulating action toward reform. I share with these researchers a
participatory worldview that resonates with my principles, beliefs, interests and
values. The PAR approach is appealing precisely because its storytelling and PAR
group components can be used interchangeably. Cultural cohesions and differences
can be explored.
I will provide reasons for this methodological choice in subsequent chapters
however in summary core elements of this research process are:

It takes place in collaboration with participants

Participants determine the agenda

Participants drive the research

Participants decide on actions
Ethics approval
Ethical approval was obtained from University of Surrey in 2010 and will be
discussed in more detail in Chapter 5. The next section of this introduction gives an
overview of each chapter within this inquiry.
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Overview of Chapters
Chapter 2 provides the context for this inquiry and locates government reports,
social policy and historical and cultural documents. These are not necessarily
research studies because there is a lack of empirical investigation into this area of
interest. I briefly describe Guyana’s colonial past, including the political and socioeconomic circumstances and the diversity of its population. Evidence is provided on
the reasons why diabetes constitutes a major health problem in Guyana. The
reasons why Guyanese people migrated to the UK, especially those from the middle
class, are explained. Guyanese tradition and culture are discussed. I then describe
the global chronic illness framework, the direction of the World Health Organisation
(WHO) with respect to the provision of health care services and its influence on UK
health services. Other health care delivery frameworks for long-term conditions
adopted by the UK will be presented. The provision of health services for people
diagnosed with diabetes is debated, including the philosophy and evaluation
underpinning the adopted direction. Relevant literature from UK Government reports
and Diabetes UK are discussed.
Chapter 3 presents the literature review of the pertinent research that has thus far
been undertaken in this field of study. I focus on the topic of Type 2 Diabetes,
providing an overview of medical research on the incidence, prevalence and risk
factors of diabetes, obesity and the unhealthy diets and lifestyle changes that have
an impact on an individual’s life. There is however paucity of research on/with
people living with Type 2 Diabetes in BME communities in the UK or internationally.
Reviewed also are research studies that are participant driven and rely on the
experiences of people living with long-term conditions for example, chronic illness
conditions such as multiple sclerosis, asthma and arthritis as well as diabetes.
These studies give an insight into how individuals manage long-term conditions and
have given voice to their experiences. Research on various courses of selfmanagement of illnesses, such as the Expert Patients Programme and DESMOND
(Diabetes Education and Self-Management for Ongoing and Newly Diagnosed)
(Cradock 2005; Fleming et al. 2008; Khunti et al. 2012) are critically reviewed. From
my mental health background, I know that individuals with Type 2 Diabetes can
experience psychological issues so it was important to cover those research studies
as well. Alongside this literature, I assess whether psychological issues occur within
BME diabetic communities. In this section on research studies I also turn to the
literature on service delivery and explore the role health care practitioners can play
in helping their clients. I pay particular attention to the way in which individuals from
BME communities cope with long-term conditions. I review studies on health care
practitioners’ work as they attempt to form partnerships with those from BME
communities. Of interest to me in this inquiry are the health beliefs and practices of
BME groups when managing long-term conditions. I suspected from the outset that
alternative health care practices would be the choice of some participants, so I
reviewed this literature in anticipation.
Chapter 4 explores the principles of this PAR inquiry. I argue for the guiding
principles to be aligned with social justice, social equity, freedom of speech and
17
human rights. I identify Reid’s (2004) principles of inclusiveness, collaboration,
fostering collective action toward social change and being aware of power
distribution and adhere to these throughout the inquiry. I will also pay attention to
researcher reflexivity that advocates openness and transparency regarding the
choices made throughout the study. Another valued aspect that is covered is
community participation, which involves being responsive to participants’ needs and
designing services to meet those identified needs. These principles resonate with
PAR principles. I share Koch and Kralik’s (2006) participatory worldview and argue
that it is important to listen to Guyanese women whose lives have been interrupted
by diabetes and who, so far, have been voiceless. I argue here that collecting data
through storytelling is appealing precisely because it will enable me to listen to
Guyanese women’s voices. I discuss the importance of evaluation in this type of cooperative inquiry, as it provides rigour criteria and shows that the inquiry is
trustworthy and believable. I also provide the rationale for selecting Koch and
Kralik’s PAR methodology.
Chapter 5 gives a full description of this PAR process for visiting the Guyanese
women at their homes (the research setting), gaining ethics approval, ethical and
methodological considerations, recruiting participants to the inquiry, maintaining a
self-reflective journal, generating data and analysing that data. I was an apprentice
in the methodology and practiced one-to-one interviews and several group sessions
under the guidance of both PhD supervisors. Four women were recruited for my
apprenticeship. I then recruited another four Guyanese women living in the UK to
take the total number of participants up to eight. Both storytelling and PAR group
processes are discussed in this chapter, and the principles guiding this inquiry are
reiterated.
Chapter 6 focuses on the one-to-one story telling interviews. The participants had
the opportunity to tell their story in their own time within a safe environment, usually
their own home. I researched alongside these eight participants from March 2010 to
September 2012. During this time the women took control of their own stories and it
is these eight storylines that are presented in this chapter. Using Koch and Kralik’s
(2006) ‘look, think and act’ cyclical analysis framework, eight stories were analysed
and constructs were identified to represent commonalities in experiences. An
example of how each story has been analysed is found in the appendices.
Chapter 7 outlines what happened in the PAR group sessions and resultant actions.
We held 14 PAR group sessions over a period of 18 months with six participants.
Here, I talk about the cyclical process of analysis whilst facilitating the group
process. Some of the common constructs were discussed collaboratively with the
women and the PAR group process and actions taken by ‘us’ (researcher and the
co-participants) are documented to illustrate this collaborative approach to
researching alongside the participants.
Chapter 8 holds the discussion and incorporates data from the one-to-one
interviews, the PAR group sessions and relevant literature. Here, I reiterate the
main constructs derived from both sets of data. I explore the women’s experiences
and the diabetic services provided for them, their cultural beliefs and values, and the
18
effect these have on their long-term condition. In this chapter I present our (mine
and the women’s) discussions about the way in which health care practitioners can
meet the needs of ‘our’ BME community. As a researcher I reflect on how this
Guyanese community learnt to maintain their Guyanese connections locally and
overseas and explore these connections as forms of support. Additionally, I bring
aspects of the inquiry together and present my main thesis.
Chapter 9, the conclusion chapter, provides an overview of the inquiry. I answer the
research question and assess whether my aim and objectives have been achieved.
I consider what can be done for the wider Guyanese community and draw together
key constructs emerging from the inquiry. I evaluate the entire research process.
The actions taken by the women and the overall group action are reviewed to
identify what further research is needed. I argue that this study is believable and has
complied with the rigour criteria. I also present the strengths and limitations of the
PAR approach and consider the implications for practice for commissioners and
practitioners, education and research. The key contributions made by this inquiry
are also included in this chapter.
Conclusion
In conclusion, my background in nursing and education has shaped the way I see
the world and interact with people. It has also provided me with a range of
transferrable skills that I could then apply to this inquiry. I feel uniquely privileged to
have been able to research collaboratively with this group of women in a process
that is built on sharing, listening to and reconstructing stories, and enabling a
previously voiceless group to be heard for the first time.
My background and experiences prepared me for undertaking this journey and
provided me with the rationale for choosing Guyanese women living with Type 2
Diabetes for this inquiry. The paucity of research on the needs of this specific BME
group is evident and the storytelling approach of PAR is important for drawing out
underlying factors absent in official data and the wider research literature. ‘Giving
voice’ to women, I argue, will provide an insight into their management of Type 2
Diabetes and may generate new knowledge about the context of Guyanese people
living in the UK.
19
Chapter 2
Context
20
Map showing where Guyana is situated within South America
(Green and Emanuel 2000)
In this chapter I describe the Guyanese culture and consider the economic reasons
for Guyanese migration to the UK. It is important to note that the terms migration
and immigration are used interchangeably in the literature and this is reflected in
this inquiry. The incidence of diabetes is discussed and the rationale behind the
selection of Guyanese women rather than men for this inquiry is presented.
The final section discusses how the World Health Organisation (WHO) has
influenced the direction of UK health services within the chronic illness framework.
Other UK health care delivery frameworks for long-term conditions are also
considered. This appears to be medically driven with scarce resources for those
with long-term conditions. The development of the Expert Patient approach may
seem to be a ‘Do it yourself model’ lacking the guidance, support and supervision
that those living with Type 2 Diabetes require.
21
Guyanese women
Very little is known about Guyanese women living in the UK. They are a racially
mixed group of individuals comprising East Indian, African, Portuguese, Chinese,
Mixed and Amerindian heritages. This diverse group of individuals is not reflected in
the UK Census (ONS) (2001; 2011) but are categorised within the African
Caribbean group. The assumption is made that they may be working class and face
higher rates of poverty and deprivation. Beechey (1986) agrees that women from
BME communities are perceived as occupying the lower levels of class and power
structures within the UK. Nandi and Platt (2010) identify in a more recent study that
there are BME women who experience inequalities in terms of poverty and
disadvantage but that these women have very diverse experiences which need to
be explored. The intention of my inquiry is to challenge the assumption that
Guyanese women and the families who migrated to the UK between the 1950s and
the 1970s were from the lower socio-economic classes usually associated with
migration from the Caribbean.
UK Context
Many Guyanese migrated to the UK as a result of the British Nationality Act of 1948
that extended British citizenship to all members of the Empire. However, it was not
until the middle of the 1950s that migration started to assume significant proportions
(White 2006). Migration intensified during the 1960s and 1970s across all racial
groups and especially among those who could afford to leave Guyana. Ahmad
(2005:43) refers to the “push” and “pull” factors that lead to migration. One “push”
factor that may explain the exodus from Guyana is the race riots that took place
between the African and Indian Guyanese during the 1960s (Trotz 2006). The “pull”
factors may have been related to personal reasons, such as professional
development and access to greater economic opportunities.
Most Guyanese women who migrated to Britain entered nursing (Beishon et al.
1995), teaching, secretarial work or became students (Roopnarine 2013). During
the 1950s and 1960s there was a shortage of nurses in the UK, so Britain recruited
individuals extensively from 16 British colonies, including British Guiana, the
previous name for Guyana (Beishon et al. 1995). British colonisation meant that the
UK was the favourite option for Guyanese migrants because Guyana’s educational
system was modelled on the British System, and consequently individuals spoke
English and had the entry qualifications for university study or employment.
Nearly half of all ethnic minorities in Great Britain live in Greater London, (Arai &
Harding 2004). The 2001 Census (ONS 2001) recorded 20, 872 Guyanese living in
England but mainly in London; however, the 2011 Census (ONS 2011) failed to
disclose the exact number of Guyanese. Unfortunately the 2001 figure does not
account for Guyanese who are from different racial groups living in UK because the
data classify Guyanese as African Caribbean. Asians living in the UK are classified
as one of the three groups: Indian, Pakistani or Bangladeshi according to ONS
(2001), therefore Indo Guyanese have been virtually ignored in the Census
22
information unless they have been classified as ‘Other – Asian’. It is therefore
difficult to provide an accurate figure of the number of Guyanese living in the UK as
the Census data have a tendency to create homogeneous BME groups.
The British Census of 2001 (ONS 2001) shows BME groups having a younger age
profile than the white UK born population. A large proportion of African Caribbean
people are in the 30 – 44 age group. As previously mentioned, the profile of African
Guyanese is broadly similar to the African Caribbean group in the UK but this age
profile does not fully capture the multiracial nature of Guyanese living in the UK.
Personal evidence and networks indicate that many Guyanese live in the southwest of London such as Balham, Streatham, Brixton, Tooting and Clapham. The
concentration of BME groups in particular areas has been explained by ‘choice’ and
‘constraint’ theories (Lakey 1997). Choice theory argues that ethnic minorities prefer
to live within their own group for social support and shared linguistic, cultural and
religious traditions. Constraint theory argues that ethnic minority groups are
prevented from moving outside certain geographical areas by their economic
position, limited knowledge of housing opportunities and fear of discrimination. Rich
(1986) considers the difficulties due to racism and other prejudices affecting settlers
from the West Indies who came to England from 1945 – 62; and results in a high
concentration of BME communities in specific areas such as London.
Oldroyd et al. (2005) suggest that migrants establish a western lifestyle once in the
UK, but that is not necessarily true because migrants bring their beliefs, values and
practices from their respective cultures and may either lack awareness of or not
recognise the impact these beliefs and practices have on their lives within the host
country. It is therefore important to consider the health needs of these migrant
communities because they hold different discourses and understanding of their
health issues. These traditional beliefs can cause tensions or conflict with the health
beliefs and practices of the wider population. Individuals may be reluctant to reveal
details of their beliefs unless specifically asked. A study conducted by Hjelm et al.
(1998) has shown the importance of understanding the ways in which migrant
individuals choose to manage their health beliefs and cope with long-term
conditions in their host country. Although fourteen years old, this study has some
relevance for the inquiry that is being undertaken today in terms of health
practitioners’ perceptions of migrants’ health beliefs and the impact those have on
managing their long-term condition.
Studies on migration and health beliefs (Williams 1993; Lassetter & Callister 2009)
have shown the positive and negative effects that migration can have on the
physical and mental health of the individual. Guyanese women are now part of an
ageing population that is more likely to live longer and therefore be more
susceptible to long-term conditions and the complexities of care (Phillips 2012). It
seems pertinent at this point to give an overview of Guyana in order to gain some
insight into the women’s culture, values and lifestyle factors as well as the health
care system that they left behind. The beliefs and traditional practices of Guyanese
that may influence their health will be discussed later in this chapter.
23
Guyana
Guyana is the only English-speaking country in South America. Comprised mainly
of rain forest, it is situated between Suriname and Venezuela on the Northern
Atlantic coast (see map for location on page 20). About 90% of its population live
along the coastal belt; the remainder of the country is largely uninhabited with
mountain ranges and dense equatorial forests where Amerindian tribes live (Green
and Samuel 2000). About 250,000 people live in and around the capital city of
Georgetown within the Demerara region, plus there are other smaller villages and
towns in Essequibo and Berbice regions (World Factbook 2013).
Guyana is linked with the English-speaking Caribbean due to its legacy of British,
French and Dutch colonisation rather than to South and Central America which
have a predominantly Spanish and Portuguese legacy (World Factbook 2013).
Nonetheless Guyana has its own culture and traditions due to its diverse population.
A vast majority of the people speak a Creole form of English and the indigenous
population (Amerindian) communicate using a range of dialects.
History
Guyana came under British rule in 1815 and was named ‘British Guiana’ in 1831.
Following the abolition of slavery in 1835, plantation owners were compelled to free
the African slaves leading to black settlements in the urban areas. Plantation
owners were aware that they could face labour shortages so indentured labourers
were imported from Madeira from 1834, from India in 1838 and from China in 1853
to work on the plantations (Green & Emanuel 2000). This led to the multi ethnic mix
reflected in the population of Guyana today. During the first half of the 20th century,
the population rose significantly with the influx of indentured labourers, from
375,000 in 1946 to 700,000 in 1970 (Lennox 1994; Green & Emanuel 2000).
Population
Forbes Burnham, Prime Minister of Guyana came into power in 1964,
independence was gained in 1966 and the Republic was formed in 1970. According
to Trotz (2006:54), “Burnham initiated an authoritarian rule and a failed co-operative
socialist experiment” which led to economic decline. This had a huge impact on
migration and on the resident population of Guyana. Consequently the latter
remains static at 741,908 according to the 2002 Guyanese Census, with 44%
Indian, 30% African, 17% mixed and 9% Amerindian. The current population
consists mainly of young people with an average age of 23.9 years. Only 4.8% of
Guyanese are older than 65 years (Pan American Health Organisation 2010; The
World Factbook 2013). See Figure 1 for composition of population.
24
Amerindian
East Indians
Africans
Mixed races
Others
Figure 1. Composition of population (Greene and Emanuel 2000)
Culture and lifestyle
Guyanese culture is unique due to the influences of six different racial groups.
Significant cultural and ethnic variations exist within each category, but all adopted
the colony’s dominant British culture. The racial groups lived in harmony until the
early 1960s when conflict arose between the African and Indian communities
leading to riots. Unease and tension between these two racial groups continue to
persist (Pan American Health Organisation 2001).
In my experience, Guyanese people normally present as happy, compassionate and
gregarious individuals, keen on family life and engagement in social activities with
friends. The lifestyle during the 1960s was based on the British culture with an
emphasis on education. Those practices are fading as the majority of the population
from that era have migrated leaving a generation whose experience has been
shaped by economic hardships.
Guyanese food choices are influenced by racial diversity with some similarities to
the Caribbean diet. Staple dishes include curries eaten with roti (a fried flatbread),
dhal, rice with peas or beans, plantains, fried rice and chow-mein (stir fried
noodles), with all meals accompanied by a fiery sauce. Speciality dishes like
Pepperpot, an Amerindian stew, and garlic pork, a Portuguese dish, are traditionally
served at Christmas (Smock 2008).
The class structure of Guyana affects the two main racial groups, African Guyanese
and Indo Guyanese and reflects its colonial past (Williams 1991). Alleyne (2002)
writes that the African slaves came from cultures with highly developed family
systems but slavery caused a devastating effect on these systems as the slaves
were denied preservation of their respective cultural traditions. Instead they adopted
the values of their colonial masters. These colonial values were perceived as
25
superior by the slaves and eurocentrism was promoted by the colonial education
system that idealised British customs (Alleyne 2002). From the late 19th century an
African Guyanese middle class emerged and flourished. They claimed a place in
society because they met standards set by the British (Moore 1995).
Conversely the Indo Guyanese came as indentured servants but held on to their
cultural traditions, developing a nationalist ideology based largely on values they
were not pressurised to assimilate (Moore 1995). They were given land by the
plantation owners following their period of indenture and stayed within their small
communities. Consequently these two diverse groups of people were treated very
differently by their colonial masters. This led to a class structure where Indo
Guyanese were perceived as inferior and lower class. Many former slaves had
mixed relationships with their masters evolving into a mixed race middle class
population in this colony (Moore 1995).
Colonialism and post colonialism are important issues to be considered because
Guyana was still under colonial rule when the women in this inquiry migrated to the
UK. People living in a colony can be controlled and influenced by domination of one
group over another (Macleod & Bhatia 2007). The way in which groups respond to
this can lead to struggles for ethnic, cultural and political autonomy. This resistance
and reconstruction is termed post colonialism (Macleod & Bhatia 2007). The effects
of colonialism and post colonialism on the Guyanese women when they migrate to
the colonial power (often referred to as ‘the mother country’) will be discussed in
Chapter 4.
The next section reflects the type of health care system that existed before the
Guyanese participants in the inquiry migrated and one that is still in existence today.
The beliefs and practices that Guyanese people hold which play a key role in how
they manage maintenance of health and episodes of illness, are also covered next.
Health Care
In Guyana the health care system consists of public and private sectors (Pan
American Health Organisation 2001). The public sector services are free at the point
of delivery and broadly similar to the British NHS system whereas an established
private sector provides services for a fee. The Ministry of Health has responsibility
for health care, health promotion and protection programmes. Guyana, like the rest
of the world, is facing a growing diabetes epidemic. Diabetes is a leading cause of
morbidity, disability and mortality and a major public health problem. There are
between 30,000 and 40,000 Guyanese living with either Type 1 or Type 2 of the
disease. Every year 5000 new cases of mainly Type 2 Diabetes emerge from a
population of 741,908 (Ramsammy 2011).
Health Beliefs
Guyanese hold many traditional beliefs and practices that co-exist with the
established health care system. Obeah, a folk religion of African origin, incorporated
beliefs and practices of all immigrant groups. This traditional folk belief system
26
evolved during the slave period and has continued to be practised in Guyana.
Obeah practitioners could be African Guyanese or Indo Guyanese, and members of
all BME groups consult them for help with problems concerning health, work and
domestic life (Pan American Health Organisation 2001). Other practices play a key
role in the lives of Guyanese people; for example the use of herbal remedies such
as ‘bush tea’ to treat minor ailments is a normal occurrence among individuals.
Throughout the history of Guyana the church has helped to maintain the social and
political status quo (Greene & Emanuel 2000). The Dutch, French and British
colonial powers played a role in influencing religious beliefs. Many Guyanese
people are influenced by either Catholic or Anglican doctrines. However, there are
also people of the Hindu and Muslim faiths (Greene & Emanuel 2000). These varied
traditional beliefs can have an impact on Guyanese individuals with long-term
conditions, as they grapple with questions regarding why a particular condition has
occurred and the likely outcome (Smith 2012). The focus of the next section is on
chronic illness which I have termed long-term conditions.
Defining long-term conditions
Defining long-term conditions or chronic illness is complex. The Department of
Health DH (2005a) describes long-term conditions as those which have no cure but
which can be controlled or contained by medication or other interventions. These
conditions include diabetes, multiple sclerosis, arthritis, asthma and chronic
pulmonary obstructive disease. This perspective however, is viewed as a
biomedical definition compared to other definitions that see long-term conditions in a
more positive light and as a lived experience where the individual is perceived as
the expert. The individual’s lived experience is not a feature of the biomedical model
which attaches more importance to the anatomy and physiology of the body when it
is not functioning appropriately (Nettleton 2006).
WHO (2013) adds to the British Department of Health’s DH (2005) definition of longterm conditions by emphasising that chronic illnesses are diseases of long duration
and generally slow progression. However, this definition also focuses on the
negative aspect of the condition/chronic illness with the individual being perceived
as passive objects of interventions and treatment rather than being involved in their
own decision making process (Jones 1994).
It is important to stress that the terminology for a long-term condition has changed
over time. Literature of the late 20th century described chronic illness as long lasting
and incurable (Denny & Earle 2009) in contrast to acute illness which was perceived
as short-term, self-limiting or curable. In recent decades there has been a rapid
growth in knowledge and understanding of chronic illness. According to Denny and
Earle (2009) the term ‘chronic’ does not allow for periods when the patient is in
remission and experiences a period of wellness. By contrast other patients may be
ill for most of their lives with symptoms needing treatment or intervention; so
‘condition’ does not sufficiently reflect their situation. Many older people live with a
‘condition’ that limits their ability to cope with day to day activities (Goodwin et al.
2010).
27
Establishing what living with a long-term condition means to the individual is
important in terms of their body, their minds, social situation and how they adapt to
and manage changes. This is exaggerated if the individual has co-morbidities or
more than one condition with further discomfort and stress becoming an everyday
reality (DH 2005). Denny and Earle (2009) use the term patient in their description
of ‘chronic’ which still assumes medical control of an illness rather than viewing the
individual as an expert who lives with their long-term condition and could be fully
cognisant of what is happening to them. This is a further reason why I have chosen
a PAR approach in this inquiry; that is, to walk alongside participants and listen to
their stories of living with a long-term condition.
Long-term conditions
In developed countries people are living longer but are not necessarily in good
health (WHO 2013); over 17.5 million adults in the UK may be living with a longterm condition (DH (E) 2012), about 15 million in England. There is a significant
variation across England in the prevalence of long-term conditions and in our
understanding of the makeup and needs of the population living with long-term
conditions. Traditionally care has been unplanned and episodic, yet people with
long-term conditions continue to be the most intensive users of the most expensive
services (DH (E) 2012).
Conditions like arthritis, diabetes and depression are becoming increasingly
common in older age groups (Denny & Earle 2009; DH 2012). This has resulted in
heavy use of secondary care services. The Government placed the care of people
with long-term conditions at the top of its agenda in 2004 and published policies
relating to the care and treatment of this group: National Service Framework for
Long Term conditions (DH 2005); Supporting People with Long Term Conditions
(DH 2005); Long Term Conditions: Research Study Conducted for the Department
(DH 2009); Choosing Health: Making Health Choices Easier (DH 2004). This latter
policy document (DH 2004) introduced community matrons to work with patients
with long-term conditions and become key drivers to improve services for them.
DH(2005) suggests that patients with long-term conditions require support. A further
report by DH (2005a) identified the need for differing levels of care depending on
the stage of the condition and whether the individual had multiple conditions. The
majority of individuals require help and support to develop the ‘knowledge, skills and
confidence’ to self-care. DH (2005a) identified three levels of care for people
suffering with long-term conditions based on the Kaiser Permanente model which
serves to illustrate the complexity and progressive nature of long-term conditions.
Level 1 care is for the 70-80% of the population of people with long-term conditions
who require self-care support and management; level 2 care is for those individuals
who are a high risk and will need case management; and level 3 care is for those
individuals who fall into the high complexity category - approximately 50 individuals
per GP practice fall into this category (DH 2005a). So far there have been many UK
policies produced that have been the main drivers for the services to be made more
effective and provide differing levels of care for those with long-term conditions.
However assessing the impact has been difficult for the UK population especially as
28
individuals from BME communities may not necessarily obtain the care and support
that they require (Oldroyd et al. 2005).
Individuals from BME communities are more likely to report long-term health
problems than their indigenous counterparts; the prevalence of long-term conditions
is at least five times higher among those from BME backgrounds in the UK
(DH2001, 2007). The explanation for this according to Higginbottom (2006) and
Salway et al. (2007a) is that in BME groups’ long-term problems may relate to
migration issues and the separation of family members. Support is crucial in trying
to manage and live with a long-term condition. Therefore, the presence or absence
of a family and household are strong influences on whether or not people are able
to come to terms with, cope with, and manage a long-term health condition. Besides
family support there are a number of frameworks that have been developed to
assist individuals in managing their condition regardless of their ethnicity.
Chronic Illness frameworks
The WHO provides guidelines on how health services can be formulated for those
with long-term conditions worldwide. In 2002, the WHO produced the Innovative
Care for Chronic Conditions report which was intended to alert decision-makers
about the changes in global health regarding chronic conditions. The aim of this
report was to prepare policymakers, health service planners and other relevant
parties to take the pertinent action to reduce the threats these conditions pose to the
health of the individual. The report was particularly generated with low and middle
income countries in mind, as their systems were not designed to manage chronic
problems. This new style of management needed a paradigm shift to create a
different kind of health care system that was based on integrated health care
(Hudson 2005).
The WHO produced a later report in 2011 examining issues related to the provision
of health care for those with non-communicable diseases, the revised name for
long-term conditions in low and middle income countries, the geographical grouping
under which Guyana falls. Apparently these countries still have health care systems
that do not meet the need for chronic care as their focus remains on hospitalcentred care. Often, diagnosis of the condition is made when the disease is at an
advanced stage and requires expensive high technology interventions. This report
from the WHO sets global standards that still reflect the medical model of treatment
for those with long-term conditions. However a shift has been made in the sense
that the individual is viewed as an expert and is empowered to self-manage his or
her condition. This change in perspective reflects an assumption made by the WHO
that people are willing and able to perform various self-care behaviours that are full
of complexity. Ferner (2003) suggests that communicating instructions to encourage
self-care behaviours can be difficult and as with any long-term condition,
misunderstandings can occur. Therefore, care needs to be taken to ensure that selfmanagement is appropriate for individuals, in particular those migrants who face
potential language or cultural barriers.
29
The self-care option for long-term conditions has been adopted by most countries
uncritically and in the UK by the Expert Patients Programme which is designed to
assist individuals to:

reduce the severity of their symptoms

work in partnership with NHS professionals

improve their confidence and resourcefulness in managing their condition
more effectively
(DH2005)
It is obvious that the WHO’s recommendations for integrated care and selfmanagement influenced the direction of UK health services for those dealing with
long-term conditions. The DH has also looked to other nations for a solution to
problems associated with these conditions. For example, the USA chronic care
model developed by Wagner in the 1990s was introduced to the NHS to improve the
delivery of services. This model was perceived as a strategy to improve quality,
reduce costs and encourage a significant shift in the expectations of the public
towards the self- management of their health.
Wagner (2010) suggested that the aim of the model was to provide a well organised
system where chronically ill patients would routinely receive evidence-based clinical
and supportive therapy, effective self-management support and systematic follow up
tailored to their needs. Wagner (2010) identified a growing number of persons living
with major chronic illnesses who were facing many obstacles in coping with their
condition, largely due to medical care that did not meet their needs for effective
clinical management, psychological support and information. The primary reason for
this may be the mismatch between the persons’ needs and the care delivery
systems that had been designed for acute illnesses. Evaluation of the quality of
individual care received and the need to identify individuals requiring more attention
are important parts of the model (Wagner 2010).
The challenge for policymakers in the UK has been to develop mechanisms to
enshrine the principles of public involvement, patient participation and choice for
patients with long-term conditions (Goodwin et al. 2012). Whilst the shift in care is
enshrined in words like ‘public involvement’ and ‘patient participation’, the traditional
model of care still prevails because long term conditions, such as diabetes, are
being treated based on a medical model (Blaxter 2004). ‘Patient’ is used which
denotes some element of power in the relationship; problems and needs are
identified by the care giver and the individual is promoted as a passive recipient of
care rather than as an individual who can articulate their own needs.
Co-ordinated care planning in the UK for those with long-term conditions has
attempted to change the passive relationship between the individual and the health
care practitioner (Goodwin et al. 2012). Dialogue is encouraged, active participation
and giving the individual a choice in their treatment is recommended but there is
variability in the proportion of people who have a care planning discussion. Darzi
30
(2008) suggests that there is a need to better co-ordinate care planning as well as
focus on equitable interventions that promote health and wellbeing. Care planning
seems to vary within Primary Care Trusts (PCTs) ranging from 77% to 86% across
the country (DH (E) 2012). PCTs in London and the South East, the area of the
inquiry along with other urban areas, have lower rates of care planning discussions
than elsewhere (DH (E) 2012). The DH (E) (2012) has suggested that the new
Health and Social Care Act 2012 will strengthen commissioning of NHS services
and alter the present PCTs to form clinical commissioning groups (CCGs). General
Practitioners (GPs) will take on the role of commissioners with a special focus for
those with long-term conditions. This will take place through securing continuous
improvements in the quality of services commissioned; reducing inequalities;
enabling choice and promoting patient involvement. Personalisation, information,
choice, supported self-care, shared decision making, integration and cross
boundary working is expected to be the norm for people with long-term conditions
(DH (E) 2012). Whilst the services for those with long-term conditions have
continued to develop, frameworks for monitoring and standardising the quality of
practices have been introduced into the NHS.
Quality monitoring
Quality monitoring of the delivery of care for those with long-term conditions was
introduced in 2004. The Quality Outcomes Framework (QOF) (NICE 2009) is
designed to monitor quality as part of the General Medical Contract, a specific
scheme for GP practices in the UK. The framework standardised expected
improvements in the delivery of clinical care for those with long-term conditions.
QOF was designed to make the monitoring of individuals with long-term conditions
more proactive thus improving current practice. The majority of GP practices have
taken part in it voluntarily. Where practices achieve set quality measures known as
specific indicators, they are financially rewarded as an incentive to provide good
quality care and reinvest in the services provided. QOF includes a clinical section
with a number of condition specific areas including diabetes. Unfortunately the
introduction of payments under this framework led to unintentional PCT changes
that shifted towards a more biomedical, disease-orientated model of care
(Checkland et al. 2008). It became a ‘tick box’ exercise for those with a long-term
condition.
Another programme developed by the UK government to improve quality of care
within the NHS whilst making efficiency savings is QIPP (an acronym for quality,
innovation, productivity and prevention). The programme is designed for the benefit
of patients and carers and the money saved by innovative practices and reduction
of staff is reinvested in frontline care. There has been a major challenge for the NHS
to achieve savings of £20 billion by 2015 (RCN 2012; DH 2011). The programme is
national but developed and implemented locally. The main emphasis of QIPP is to
make changes to local service delivery, for example, providing closer to home care
for those with diabetes. In reality, this has not happened in many areas even though
QIPP developed using evidence and best practice which has been formally tested
since 2012 by Early Implementer sites (RCN 2012). QIPP has several work streams
31
where savings have to be made but the one that is relevant for this inquiry is the
long-term condition work-stream that identified three key principles:

Risk profiling

Neighbourhood care teams

Self-care/shared decision making
In addition the long-term condition work-stream within the QIPP programme has to
reduce unscheduled hospital admissions by 20%, length of stay by 25% and
maximise the number of people controlling their own health through supported care
planning (RCN 2012). This programme feels more resource-led rather than being in
the interests of those with a long-term condition.
There has been much criticism of QIPP by Corrigan (2011) who highlighted the
tensions in the QIPP programme between top down economic planning and bottom
up efficiency savings at the frontline. Corrigan (2011) argues that the demands of
QIPP can be satisfied by filling boxes in a certain way but GPs for example, do not
necessarily make efficiency savings in the way the QIPP planners require. Maynard
(2011) states that meeting the £20 billion recycling target by QIPP is largely unevidenced and ambitious. There is a definite need to assess whether or not
individual outcomes are compromised by these quality systems so that they are not
adversely affected by the efficiency changes (RCN 2012). If individuals with longterm conditions are managed effectively in the community, they should be able to
enjoy a quality of life free from crises. Lorig et al. (1999) show how partnership
between the public and the health care practioners can be formed successfully,
leading to improved outcomes for individuals with chronic diseases, the other term
used for long-term conditions. This study demonstrates how a structured education
programme involves people with chronic illnesses in dealing with common issues
such as pain management, stress and self-management and developing coping
skills on a daily basis. Lorig’s work is referred to in more detail in Chapter 3.
A global perspective of diabetes followed by the UK’s estimates of individuals with
the long-term condition is discussed in the next section. Within the same section,
the development of diabetic services and standards used to monitor the
effectiveness of services delivered to individuals in the UK is also addressed.
Global context of diabetes
Diabetes is considered to be the one of the most common long-term conditions (DH
2001). The WHO (2013) estimates that 347 million people worldwide have diabetes
and project diabetes deaths to increase by two thirds between 2008 and 2030. The
world prevalence of Type 2 Diabetes is expected to affect 285 million adults aged
20 to 79 years. This figure is 6.4 % of the total worldwide population and will
increase to 7.7%, 439 million adults by 2030.
The WHO has produced a range of health policy reports (WHO 2003; 2004; 2006;
2011) showing the increase in diabetes across the world as a result of an ageing
32
population, increasing obesity, unhealthy diets and lifestyle changes. The WHO
(2003) reviewed the scientific evidence for the usefulness of screening for early
detection of Type 2 Diabetes. The aim of the WHO publication (2003) was to
stimulate discussion and encourage research with individuals at risk of acquiring the
condition whereas the WHO (2004) was an initiative targeted at developing
countries with the aim of raising awareness about diabetes and its complications.
Two further reports by the WHO (2006), first concentrated on diabetic retinopathy, a
complication of Type l and Type 2 Diabetes considered being the leading cause of
new-onset blindness in many industrialised countries and a frequent cause of
blindness elsewhere; and the guidelines for diagnosis and classification of diabetes
and intermediate hyperglycaemia.
The most recent report by the WHO (2011) updated its diagnostic criteria that
considered the individual who may be at risk of micro-vascular complications when
the plasma glucose levels were high. The report also identified the use of HbA1c in
diagnosing Type 2 Diabetes. It was an addendum to the report published in 2006
where the claim was made that the findings do not invalidate the recommendations
made in 2006 but add further evidence based on a systematic review that an HbA1c
of 6.5% is recommended as the cut off point for diagnosing diabetes. The report
further concluded that there is currently insufficient evidence to make any
recommendations on the HbA1c levels below 6.5%.
The information obtained in these policy reports (WHO 2003; 2004; 2006; 2011) is
drawn mainly from meetings, consultation groups and a published systematic
review. It would be interesting to know if those individuals with the long-term
condition were consulted in any way and how they have influenced the evidence
presented as it is not evident from reviewing the reports that the individual’s voice
has been represented. The WHO statistical data are mainly estimated and do not
fully consider under reporting of the condition so the true global extent of the longterm condition could be even greater than estimated.
The WHO’s actions resulting from the various reports (WHO 2003; 2004; 2006 &
2011) aim to stimulate the adoption of effective measures for surveillance,
prevention and control of diabetes and its complications particularly in low and
middle income countries. Guyana falls within the group of low income countries
where diabetes is the third leading cause of death among older Guyanese women
and men (WHO 2010). Another report by the WHO (2011) provides scientific
guidelines for diabetes prevention, develop norms and standards for diabetes care
and builds awareness of the global epidemic of diabetes. It partners the
International Diabetes Federation in World Diabetes Day and conducts surveillance
of diabetes and its risk factors. The global strategy on diet, physical activity and
health complements the WHO’s diabetes work by focusing on population-wide
promotion of healthy diet and regular physical activity thereby reducing the growing
global problem of obesity (WHO 2011).
33
Diabetes WHO
The WHO’s (2013) core functions are to set norms and standards, promote
surveillance, raise awareness and strengthen prevention and control worldwide. The
WHO’s (2011) data show that diabetes mellitus deaths in Guyana reached 537 or
9.54% of total deaths. The age adjusted death rate is 86.80 per 100,000 of
population ranking Guyana fifth in the world for deaths related to diabetes. Guyana
is included in these statistics because the focus of this inquiry is on Guyanese
women.
The WHO’s classification sets the standard for health care services when
categorising the different types of diabetes. The WHO (2013) classifies diabetes into
Type 1 and Type 2 and four other types that include genetic forms, drug or chemical
induced and gestational. Type 1 Diabetes results from an absolute deficiency of
insulin and more commonly presents before the age of 30. Type 2 usually develops
in adulthood, normally over 40 years of age and is related to relative deficiency and
or insensitivity to insulin (WHO 2013). It also occurs due to obesity, lack of physical
activity and unhealthy diets (Wright 2010). For the purpose of this inquiry the focus
is on Guyanese women living with Type 2 Diabetes.
Diabetes UK
Within the UK, the number of people diagnosed with diabetes is on the increase.
The DH (2001; 2003; 2010) estimate that there are 2.2 million people with
diagnosed diabetes in England and this figure is increasing annually. It is claimed
that the increase in diabetes is due to rising levels of obesity and an ageing
population living unhealthy lifestyles. As diabetes becomes more common in older
people, vascular, neurological and psychological complications occur that will lead
to loss of independence (Gregg et al. 2002).
Diabetes is also on the increase among BME communities. Compared with the
white population, South Asian and African Caribbean people are respectively six
and three times more likely to have Type 2 Diabetes (DH 2007b). Susceptibility to
cardio vascular disease, retinopathy and increased mortality is higher among BME
groups (DH 2007b).
The large body of UK and global literature regarding Type 1 and Type 2 Diabetes is
predominately of a biomedical or physiological perspective. Type 1 Diabetes
accounts for 10% of all diagnosed cases where regular insulin needs to be taken
(Kumar & Clarke 2005). The cause of the illness is a fault in the immune system,
where anti bodies attack beta cells of the Islets of Langerhans in the pancreas
(Payne-Jackson 1999; Nair 2007; Kumar & Clark 2005). In Type 2 Diabetes, the
pancreas is not working effectively so it fails to produce the right amount of insulin to
maintain a normal blood glucose level (Capaldi 2007; Page & Hall 1999). Glucose is
then built up in the blood; the onset is slow and is therefore not detected in the early
stages of the condition.
34
Type 2 Diabetes
Type 2 accounts for 85-90% of the population diagnosed with diabetes. It is more
common in middle age and normally detected during the course of routine
examination or investigation for another problem (DH 2010). Without visible
symptoms, individuals do not perceive that they have a serious problem (DH 2010).
Symptoms such as thirst, tiredness and frequency of micturition build up gradually.
This means that at diagnosis, 20% already show signs of complications such as
damage to the micro vascular system leading to kidney damage and loss of vision.
There is also a higher risk of heart attacks and damage to the nervous system
leading to injury, infection and the onset of gangrene with subsequent limb loss
(Watkins et al. 2003; Page & Hall 1999).
Type 2 Diabetes can remain undiagnosed in individuals who lack awareness of the
condition (Phillips 2012). It has been described as a complex and time-consuming
condition. The individual needs to consider the necessary life changes, cope with
the complexities of the condition, and make self-monitoring and education central
parts of self- management. When living with diabetes, the DH (E) (2007) suggests
that the individual learns to self-manage to improve diabetes control and increase
their knowledge of the condition. Education and learning is therefore a key feature
of the self-management programme as effective education enables individuals to
manage their diabetes on a day to day basis. Self-management literature is referred
to and critiqued in Chapter 3.
Development of diabetic services
Diabetic services have evolved from a medical model of provision where the
hospital consultant originally assumed responsibility for the individual’s care rather
than the GP. This changed when the GP contract was introduced and care was
delivered by the GP and the PCT. Kirby (2002) summarises these developments
and highlights some of the pitfalls. Since the 1970s, primary and community health
care practitioners assumed responsibility for the routine review, monitoring and
management of individuals with diabetes. Prior to the 1970s, a relationship of
physician/patient existed but then shared care developed which was joint
participation of hospital consultants and GPs in the planned delivery of care (Kirby
2002). However with the advent of the GP contract in 1990 and payment for chronic
disease management in primary care in 1993, this brought a change in focus for
diabetes care (Kirby 2002).
Whilst this shared programme of care was perceived as a key development in
diabetic services, Kirby (2002) identified a number of disadvantages with this
approach as no specific health care practitioner took responsibility for the
individual’s care. Those practitioners working in primary care were not used to
performing routine follow up appointments and lacked the expertise/ specialist
education to give optimal care to the individual (Daly 2012).
Meanwhile, the National Service Framework (NSF) (DH 2001) produced the first set
of national standards advocating a partnership approach to care for those with Type
35
2 Diabetes. This new framework required the health care practitioners and the
individual to work together with the emphasis on collaborative care. National
Institute and Clinical Excellence (NICE 2003) also published further standards that
all individuals with diabetes should be offered structured education tailored to meet
their needs and accessible across different cultures and geographical areas. In
addition to the standards advocated by NICE, other self-management approaches
for those with diabetes were offered, DESMOND based on the principles of
empowerment and a partnership approach; and the Expert Patient. The aim of
these programmes (DESMOND 2004) is to enable individuals to develop skills and
confidence to manage their diabetes. However, whilst these developments were
presented as significant changes to diabetic services, issues like poverty, disparity
of access and cultural barriers remained unchallenged. Individuals with diabetes
from BME communities have not yet engaged with these developments as these
have not translated into practice (Stone et al. 2006).
NICE (2009) provided further recommendations for GPs and the wider NHS for the
management of Type 2 Diabetes based on evidence produced by the WHO (WHO
2011) and the QOF. These recommendations used the WHO’s definition of diabetes
as a starting point and a bench mark that every health care service should use to
provide for individuals with diabetes (NICE 2009). This guideline offers best practice
advice that takes into account the individual perceived needs and preferences. It is
expected that people with Type 2 Diabetes make informed decisions about culturally
appropriate and accessible care and treatment in partnership with health care
practitioners. Families and carers should have the opportunity to be involved in
decisions about treatment and care and give support. NICE (2009) guidelines also
advocate good communication as essential, supported by evidence-based written
information tailored to meet the individual’s needs. Services were given a choice to
either adopt nationally developed guidelines and adapt such guidelines to reflect
their particular circumstances or choose to have neither (Diabetes UK 2010). See
Appendix 1.
Diabetes UK (2010) added advice to the NICE guidelines and identified specific
issues that should be addressed in any GP practice guidelines. This included:

Prevention of Type 2 Diabetes

Identification and diagnosis of people with diabetes

Initial assessment and care at diagnosis

Initial and ongoing diabetes education

Provision of dietary advice

Continuing review of care
A newer report by the DH (2011) and Diabetes UK provided further guidance called
Year of Care (YOC 2011) again emphasising shared care for those with diabetes.
Kirby (2002) had previously discussed shared care developments during the 1990s
36
however this form of collaborative working emerged again as YOC in a different
guise. DH (2011) envisaged the YOC programme as a three year pilot setting out a
diabetic pathway aimed to make consultation between people and clinicians a more
collaborative process through personalised care planning and co-ordination. Care
plans were intended to give the individual greater ownership of the management of
their diabetes through joint decision making with health care practitioners. Whilst
key achievements have been documented since this model was implemented in the
north of England, there is no evidence to suggest that it has been implemented in
the rest of the UK or the London area where this inquiry is situated.
In summary the majority of people with Type 2 Diabetes are treated by the GP and
PCT (BMA 2012). The team agree the practice guidelines for the management of
diabetes which clearly define the roles of each member. The practice nurse
provides diabetes care but other available practitioners such as the diabetes
specialist nurse, and podiatrists play an equally important role in working
collaboratively with the individual. Within any diabetic service the integrated care
pathway is the preferred model of care for those with diabetes clearly identifying that
the individual is likely to need a wide variety of services during their lifetime (Young
2010).
Services now available to individuals with diabetes include quality initiatives which
make services more responsive. A visit to a diabetic service in my local area
reassured me that services have adopted the newer NICE (2011) care pathway
guidelines (see Appendix 2.) with multi-disciplinary working, holistic assessment of
need, information and advice and personalised care planning being provided.
However, there is limited evidence that these local services meet the needs of BME
communities presenting with their own cultural and health beliefs.
Cultural and health beliefs affect an individual, (Smith 2012; Greenhalgh et al. 1998)
but cultural sensitivities may be overlooked by health care practitioners. Brown et al.
(2007) discussed how the biomedical model of managing diabetes is still offered to
everyone with diabetes regardless of health beliefs or culture. As previously
mentioned, the model is based on an assumption that the body can be repaired like
a machine (Nettleton 2006). Other social factors that impact on the person’s life are
not always considered. Individuals may draw on other systems to help cope with
their condition as part of their self-care model (Brown et al. 2007). Holdich (2009)
believes that developing awareness is important in older people as they need to
have a good understanding of their long-term condition to be sufficiently motivated
to make decisions about their health. This can only occur if: health care practitioners
are clear about their roles, regular contact is maintained, education is offered and
care planning fits the local pathway/model of care (Holdich 2009).
Conclusion
This chapter has set the contextual background and rationale for why older
Guyanese women who had migrated to the UK were selected for this inquiry. These
women are a racially mixed group of individuals comprising East Indian, African,
Portuguese, Chinese, Mixed and Amerindian about whom we know very little.
37
Within official statistics, this diverse group of women is hidden among the African
Caribbean community. The specific interest in them stemmed from reports that Type
2 Diabetes is a serious concern in Guyana plus female family members living with
the long-term condition. These individuals who are living in the UK are ageing and
Type 2 Diabetes occurs in an ageing population whose health care needs could
become complex and difficult to manage. Official census data do not give either a
realistic picture or the extent of diabetes within this BME sub-population group. This
inquiry therefore seemed to be the ideal opportunity to give the women space and
time to give voice to their experiences of living in the UK especially as there is a
paucity of research regarding them and more specifically living with a long-term
condition. However Diabetes UK (2012) suggests that there is a greater prevalence
of diabetes in women from BME groups for example; diabetes is three times more
likely in Black Caribbean women and two and a half times in Indian women when
compared with women in the general population. This reinforces my rationale for
why the diverse group of Guyanese women rather than men are chosen for this
inquiry due to the high incidence of diabetes among BME women.
The WHO has influenced the direction of UK services, which DH health policies and
NICE (2009; 2011) guidelines have built on to focus on the needs of individuals with
long-term conditions and specifically Type 2 Diabetes. Whether these services are
accessible to all, especially those from BME communities, is questionable and there
are far reaching implications for health care practitioners adopting the suggested
strategies for a partnership approach, sensitive to the individual’s needs, culture and
beliefs, and willingness to change their lifestyle.
In Chapter 3, increasing trends of an ageing population, obesity, unhealthy diets
and lifestyle changes that impact on an individual’s life are noted. There is a paucity
of research regarding the participants of this inquiry placing reliance on international
and UK research studies. This chosen literature provides an overview of the
incidence, prevalence and risk factors of diabetes among BME communities.
38
Chapter 3
Literature Review
39
Diabetes is a long-term condition that particularly affects BME communities in the
UK especially Indian, Asian and African Caribbean groups. Guyanese migrants are
categorised within these groups (Tillin et al. 2012). This chapter will begin with a
description of the literature review strategy which served to guide the selection of
research papers for the review. A critical evaluation of the selected articles will be
appraised based on the framework suggested by Jones (2013: 55). This framework
appraises four key areas of the articles: the conceptual framework; study design
and methods, research analysis and conclusions. It is important to point out that the
literature review does not provide a synopsis of all research articles relating to Type
2 Diabetes. Instead the focus is on the following key areas:

incidence and prevalence,

diabetes complications,

cultural factors,

risk factors,

psychological issues,

living with chronic illness including diabetes and other long-term conditions
such as arthritis, self-management,

compliance and non-compliance,

use of complementary and alternative medicine.
In the literature the terms ‘long-term conditions’, ‘chronic illness’ or ‘long-term
illness’ are often used interchangeably to describe a serious ongoing health related
problem with no cure.
Search strategy and terms
The following databases were included in the search, BNI, Medline, Science Direct,
Scopus, CINAHL. I commenced my inquiry in January 2010 and considered
research articles from 1998 because I wanted to review a wide scope of literature
due to the paucity of research on Guyanese people with Type 2 Diabetes. My initial
search was on the general term diabetes. My initial hit when I selected diabetes
revealed about 80, 000 articles on CINAHL. Then I narrowed it down to the UK but
still obtained several thousand articles. I decided to refocus the search on Type 2
Diabetes and followed by diabetes and Guyanese people and UK. There were
several thousand articles on Type 2 Diabetes but none on the combined search. I
then restricted the dates to 2012 and added the search terms, Black and Minority
Ethnic (BME) communities combined with Type 2 Diabetes. My rationale for
extending the date was due to the limited research articles that studied Guyanese
people with Type 2 Diabetes in the UK. Instead I located Scot (1998; 2001) and
Brown et al. (2007) who studied African Caribbean people and Type 2 Diabetes;
these were considered to be relevant for the inquiry because Guyanese living in the
40
UK are linked with this specific BME community. In my later searches that
concentrated on international studies on BME groups with Type 2 Diabetes, I
discovered Back et al.’s (2012) study that focused on Guyanese people with Type 2
Diabetes living in New York. I decided to refocus my search to include Type 2
Diabetes and complications along with original terms such as BME groups; this
showed 140 published articles but not all of them were research studies. I reviewed
(Lusignan et al. 2005; Forouhi et al. 2007; Massó González et al. 2009) from these
later selected articles that discussed incidence and prevalence of diabetes because
the Department of Health literature and Diabetes UK commented on the increase in
Type 2 Diabetes among the BME communities. (Refer to Table 1 on page 41)
The search was subsequently narrowed down to literature on Type 2 Diabetes in
BME communities in the UK. Other databases were used to access further research
articles. The OU one stop search identified 10,771 articles but many of them were
American and international studies. At that stage I was more interested in the
research studies conducted in the UK but took the decision to include BME studies
on diabetes in the rest of the world. Other key words were then used for example,
Type 2 Diabetes and health beliefs; psychological issues including; depression, use
of complementary and alternative medicine and self-management. The emerging
literature on diabetes from (Lloyd 2010; Pouwer et al. 2010; Lloyd et al. 2012)
showed a prevalence of mental disorders particularly depression. Lorig’s work on
self-management is referred to because she has contributed to a large body of
knowledge on self-management of arthritis but the individual’s voice was missing
from her material. To capture the missing voice, I examined Koch and Kralik’s
chronic illness research programmes who researched alongside women and men
living with long-term conditions mainly in Australia. I was interested in PAR and their
application of that approach to those with long-term conditions as discussed in
Chapter 1.
In addition to these sources, I explored grey literature including Government
publications on diabetes and consulted with experts in the field regarding action
research who attended the ALARA (Action Research Congress) in Melbourne in
September 2010. Other sources accessed included Diabetes UK and internet
search engines including Google Advanced Scholar. Following analysis of the
primary data, additional searches were undertaken to help contextualise the
emerging findings. I also searched the reference lists at the back of journals and
reviewed the content of the diabetes journals such as Diabetes Care, The Diabetes
Educator and Patient Education and Counselling to obtain relevant research articles
for the inquiry. The table below summarises the searches that I undertook.
41
Table 1: Summary of the terms
Search
Engines
Key Words
Number of
papers
CINAHL
Diabetes
80,088
OU one stop
search
Type 2 Diabetes and
Minority groups and
UK
Type 2 Diabetes and
depression
Type 2 Diabetes and
African Caribbean
and UK
Type 2 Diabetes and
BME groups and UK
Type 2 Diabetes and
self-management
Type 2 Diabetes and
lay beliefs
Type 2 Diabetes,
ethnic minority and
CAM
PAR and chronic
illness and women
CINAHL
OU one stop
search
British Nursing
Index
British Nursing
Index
Scopus
Google Scholar
Google Scholar
Total
Included in
review
10,771
Selected
papers
reviewed
140 (Type 2
Diabetes)
20
19,438
13
11
52
6
4
20
4
4
56
27
21
82
10
8
6320
10
7
17,100
30
11
260
83
13
4
Inclusion criteria
The aim of this search was to identify the existing body of knowledge relevant to the
research topic. The paucity of research regarding Guyanese migrants meant a
wider search being undertaken to include other BME communities in the UK and
minority groups living with Type 2 Diabetes in a global context. The formal literature
provides empirical evidence for studies on Type 2 Diabetes and the wider term,
chronic illness. Due to the limited literature and information referring to Guyana and
Guyanese, the search period was extended from 1998 to 2012 and encompassed
other appropriate studies. Back et al. (2012) is the only Guyanese study I located
which focused on Type 2 Diabetes. It is American but the issues identified are
relevant for this inquiry due to the absence of research studies relating to this group.
All literature acquired was written in English. Seminal studies that were original and
still influential in the field of long-term condition/diabetes have been referred to
where necessary.
Research on diabetes falls into two groups: first, studies on bio-medical driven
research and population health drivers that encompass diabetes complications,
psychological issues and medical management, and second, studies researching
alongside people with diabetes that are person centred and group driven. The first
group comprises biomedical literature that positions diabetes as a medically
diagnosed and treated condition. The issue of non-compliance and self-
42
management education is emphasised within this literature. All biomedical studies
are quantitative and concerned with the measurement of observable phenomena,
finding links between observable and measurable phenomena and the application,
the sampling techniques and the experimental design so that the research is
generalisable and replicable. The aim is to ensure objectivity is maintained.
Randomised controlled trials are also referred to in the review that “set out to
evaluate the effects of a particular treatment in a population where an intervention is
introduced, and a comparison is made of the outcome with a control group.
According to Lewith and Little (2013: 242) the population must be clearly defined
and selected”. The second group of literature addresses the emotional and
psychological aspects of diabetes in culturally diverse groups using qualitative
research approaches. This has become a distinct area of research encompassing
studies that focus on the way individuals live with a chronic illness and the diverse
ways they accommodate their chronic illness experience within their daily lives. The
research articles by Koch and Kralik and Koch et al. selected participatory action
research that concentrated on how people experience their lives and the meanings
and interpretations that they give to these aspects is viewed as being fundamental.
Incidence and prevalence of diabetes
A number of studies, (Lusignan et al. 2005; Massó González et al. 2009) have
shown a rise in the prevalence of diabetes but very few have examined the
incidence of diabetes in the UK. Incidence as an epidemiological term is used to
refer to the rate of occurrence of a particular illness and similarly prevalence is
described as the number of cases of an illness in a given period. Oldroyd et al.
(2005) suggest the reasons why it is important to consider incidence and prevalence
of diabetes is because it can vary by ethnic group for example; Type 2 diabetes is
much more common in South Asian and African Caribbean groups in the UK.
Lusignan et al. (2005) conducted a secondary computer data analysis study to
examine trends in the prevalence of patients diagnosed with Type 2 Diabetes. They
used data from the Doctors’ Independent Network (DIN), an anonymised
computerised UK primary base comprising 74 Family Practices from 1994 – 2001 in
England and Wales. The prevalence rose from 17/1000 in 1994 to 25/1000 in 2001.
The researchers concluded that glycaemic control had not improved and obesity
had increased but that doctors had limited power to control the weight of their
patients.
Another study by Forouhi et al. (2007) identified that there is a paucity of information
on diabetes incidence in the UK. They suggested that impaired glucose regulation in
the non-diabetic range is predictive of an incidence of diabetes. They conducted a
longitudinal study in 1999-2000 in Ely, UK with 1040 non diabetic adults aged 4069. The data supported the recommendation that the original cut off of 6.1 mmol/l
should be retained when identifying the category of impaired fasting glucose. The
limitations of the study have been acknowledged by the researchers as the sample
group were mainly White European origin living in an affluent area so were unable
to describe the incidence in people of other ethnic groups. The sample is not
generalisable to the rest of UK.
43
A later longitudinal study by Massó González et al. (2009) examined UK trends in
the prevalence and incidence of Type 1 and Type 2 Diabetes. Data were obtained
from THIN – a primary care medical records data base that contained information
entered by primary care physicians (PCPs) in the UK. They used the database to
identify individuals aged from 10 to 79. Data were collected on treatment patterns
and body mass index in the prevalence and incident cases. Incident cases were
separated from the prevalent cases by date of diagnosis and patients with
gestational or drug induced diabetes were excluded. Diabetes prevalence increased
from 2.8% in 1996 to 4.3% in 2005. Incidence of Type l diabetes remained constant
during the study period but the incidence of Type 2 Diabetes rose from 2.60 to 4.31
in 2005. Massó González et al. (2009) concluded that the prevalence and incidence
of diabetes have increased in the UK over the past decade but that the increase can
be mainly explained by the increase in Type 2 Diabetes and its association with
obesity. This study too could be criticised for not including screening/recording
information collected in primary care which could have been a cause of the increase
of prevalence. It was too readily dismissed and no limitations of the study were
presented.
Back et al. (2012), conducted an American study from 2004 to 2006 that focused on
Indian Guyanese living in New York and noticed a high prevalence of Type 2
Diabetes among this group when comparisons were made with Caucasian, African
American and Hispanic patients with diabetes. This study is relevant for the inquiry
as Back et al. (2012) observed that Type 2 Diabetes was more common in younger
and leaner Guyanese men and women than other ethnic groups. They identified the
need for culturally appropriate strategies to prevent and control diabetes among
Guyanese inhabitants in New York.
The evidence from the UK Government medical report (DH2010) estimated that 2.2
million in England are diagnosed with diabetes and the figure is increasing yearly. A
newer report by Diabetes UK (2012: 4) states that “2.9 million people have been
diagnosed with diabetes in the UK. By 2025, it is estimated that five million will have
diabetes”. Increasing obesity levels and an ageing population are claimed as
contributory factors. It is estimated that 850,000 people in the UK have undiagnosed
diabetes (Diabetes UK 2012).
The UK prevalence of the long term condition is possibly five times higher in those
from BME backgrounds (DH 2001, 2007). DH (2001, 2007,) and Tillin et al. (2012)
also highlight that people of South Asian, African and African Caribbean descent are
at greater risk of developing Type 2 Diabetes than the rest of the population.
Diabetes UK (2012: 9) suggests that “compared with women in the general
population diabetes is five times more likely in Pakistani women, at least three times
more in Bangladeshi and Black Caribbean women and two and a half times more in
Indian women”.
Diabetes complications
A large scale randomised control trial (RCT) by United Kingdom Prospective
Diabetes Study (UKPDS), Turner (1998) viewed diabetes as a medical problem with
44
specific complications. This is an influential study hence my rationale for including it
in the literature review. It provided guidelines for the management of Type 2
Diabetes. This study demonstrated that tight control of hypertension reduced the
risk of death from the complications of diabetes by a third and the risk of death from
stroke by more than a third. In this influential study 1148 people with hypertension
were randomised into two groups, one group with “tight blood pressure control”
achieving a blood pressure mean of 144/82 mmHg and a group with “less tight
blood pressure control” achieving 154/87 mmHg. Tighter blood pressure control in
patients with Type 2 Diabetes was linked to significant reductions in stroke risk,
heart failure and macro vascular and micro vascular complications. The conclusions
drawn from the study showed that tight blood pressure control in patients with
hypertension and Type 2 Diabetes achieved a clinically important reduction in the
risks of death (Turner 1998). In reviewing this RCT, which is referred to in many
diabetic research studies patients were either selected by the research team or
offered to select themselves. The population was carefully selected but bias can be
introduced in RCTs where the population may be selected for recruitment but does
not represent the key population of interest (Lewith & Little 2013). The patients were
reviewed every three months during the life of the study but in reality, patients are
seen every 12 months for a diabetic review. Three monthly reviews would have had
resource implications. Therefore what was achievable may not necessarily apply to
all individuals with Type 2 Diabetes especially as results from RCTs are generally
applied to clinical practice. The strength of the study lies in the fact that it is good
example of reducing complications in those with Type 2 Diabetes but for a group of
selected patients.
A ten year follow up for the 884 patients undergoing post-trial monitoring among the
1148 patients randomly assigned to tight or less-tight blood-pressure control was
conducted by Holman et al. (2008). This 10-year follow-up study of the survivor
cohort from the UKPDS blood-pressure – intervention trial showed that the benefits
seen in patients assigned to a strategy of tight blood-pressure control were not
maintained once the differences in blood pressure seen during the trial itself were
lost.
Since the publication of the UKPDS blood-pressure results, Holman et al. (2008)
reported on other randomized, controlled trials that have confirmed the importance
of treating hypertension in patients with Type 2 Diabetes. They believed that none of
those subsequent studies have reported post-trial follow-up data, so the longevity of
benefits observed during the trial is unknown. The limitations of their study were
discussed but Holman et al. (2008) ultimately believed that blood-pressure control is
important in reducing the risks of microvascular and macro-vascular disease in
individuals with Type 2 Diabetes however this control must be maintained if the
benefits are to be sustained.
45
Factors influencing diabetes
Lifestyle factors
The increase in Type 2 Diabetes among ethnic groups is partially attributed to
changes in lifestyle and traditional diets as many refuse to change their behaviour
when eating traditional foods. This evidence can be perceived as anecdotal due to
the lack of empirical evidence. In my experience, Guyanese people living in the UK
continue to eat their traditional dishes as a cultural link to their homeland. This diet
is similar to those from the African Caribbean and Asian countries (Brown et al.
2007). The Indo Guyanese influence means Guyanese people also consume
curries, dhal, rice and roti as part of the Guyanese cultural diet. The impact cultural
factors can have on diet and lifestyle is explored in the next section.
Cultural factors (health beliefs)
The concept of culture has a range of meanings depending on the context in which
it is used. Culture is defined as the symbolic and learned aspects of human society
and includes characteristics such as language, custom and convention (Kleinman
1988). Helman (2007: 2) sees “culture as a set of guidelines, both implicit and
explicit, that an individual inherits as a member of a particular society that tells them
how to view the world through experience and how to behave in relation to others,
supernatural forces or gods and the natural environment”. Helman (2007) describes
culture as an inherited lens through which the individual perceives and understands
the world that he inhabits and learns how to live within.
Kleinman et al. (2006) suggest that when we develop an illness, how we perceive,
experience, explain and cope with it is culturally shaped specifically to the social
positions we occupy and systems of meaning we employ. How we communicate
health problems, present symptoms, choose when to go for care, and evaluate care
are all affected and shaped by cultural beliefs. It has been shown that cultural
beliefs influence disease conceptualization, adaptation and coping strategies
(Kleinman et al. 2006). Making a connection and understanding how these
traditions, beliefs and practices might conflict with the biomedical model of care is
important and can have a major influence on the person’s management of their
Type 2 Diabetes.
Smith (2012) investigates Type 2 Diabetes with African Caribbean women living in
Florida using a cultural belief model. In this qualitative study Smith (2012) gave
thirty women a cultural consensus beliefs questionnaire and following a cultural
analysis found that the women shared a single cultural belief model about Type 2
Diabetes. The women discussed their struggles with their traditional Caribbean diet
and believed in traditional Caribbean medicine such as cerasee, bitter melon bush
tea and cinnamon bark to treat their diabetes. An interesting study that is a valid
piece of research that outlines a theoretical framework and identifies the aim of the
study linked to an existing body of knowledge about cultural beliefs. The limitations
of the study are acknowledged by the researcher.
46
Although there may be cultural differences in a social group based around religious
beliefs or social class, there may also be shared cultural beliefs and practices such
as diet. There is limited research focusing on Guyanese culture, diet and diabetes in
the UK. However, many Guyanese are of South Asian origin as indicated by Back et
al. (2012) that focused on Indo Guyanese, the term used for Indian Guyanese.
Reference is made to studies by (Chowdhury et al. 2009; Fleming et al. 2008;
Lawton et al. 2008) which are relevant due to the strong Asian cultural influences on
diet. Individuals from these BME groups also consume foods of high fat and sodium
content and express difficulty in giving up traditional foods (Chowdhury et al. 2009).
Food sharing is also a cultural tradition in some Hindu communities and Patel et al.
(2001) highlight the unfortunate consequences for individuals with diabetes who feel
obliged to eat differently rather than participating in the sharing. Many may refuse to
acknowledge their condition resulting in being served inappropriate foods.
In two studies, BME groups were found to attach more importance to retention of
former dietary and lifestyle habits when they have Type 2 Diabetes. However,
health care practitioners may fail to understand this. Scott (1998; 2001) studied lay
beliefs, knowledge and practices regarding non–insulin dependent diabetes (Type 2
Diabetes) and the service user experience amongst West Indians living in the UK
with the long-term condition. Importantly Scott (2001) found that health care
practitioners lacked awareness of West Indian food culture so could not influence
their service users’ dietary patterns. They needed to learn more about BME
traditional foods so that when healthy eating advice is offered, it is culture specific.
Scott (1998; 2001) generalised her findings to all West Indians including the one
Guyanese participant. The participants were treated as one homogeneous group
when in fact each West Indian island has its own individual beliefs, cultural
differences and practices. Yet these differences are not always acknowledged in
research studies or in practice. West Indians may share certain commonalities in
foods that are part of the staple diet such as yams and sweet potatoes but these
foods are cooked and prepared differently.
Brown et al. (2007) conducted a similar study on an African Caribbean inner city
population. The authors produced similar findings to Scott’s study but could be
criticised for the same reasons. Brown et al. (2007) considered their sample to be a
homogenous group with similar beliefs and needs but they also discovered that
health beliefs affecting people’s adherence to treatment may alter their outcomes.
Unfortunately the biomedical model of managing diabetes is offered to everyone
with the long-term condition regardless of the health beliefs or culture that
influences how they respond to treatment. Individuals may draw on other systems
as part of their own self-care model (Brown et al. 2007).
Risk factors
Age, obesity, high blood cholesterol, hypertension and ethnicity/race (Oldroyd et al.
2005; Tillin et al. 2012) are risk factors associated with diabetes. Diabetes UK
(2008) suggests that groups such as ‘black’, Asian or those from BME communities
plus a family member with diabetes are at a greater risk of Type 2 Diabetes and is
almost 13 times higher in obese women compared with those of normal weight. This
47
particular inquiry falls within the BME group so the identified risk factors are relevant
for this study group.
Psychological factors
Psychological distress and depression can affect a person’s motivation and ability to
cope with the long-term condition (Das-Munshi et al. 2007; Gilbody et al. 2006). The
existing WHO definition of depression is ‘a common mental disorder that presents
with loss of interest or pleasure, feelings of guilt or low self-worth, disturbed sleep or
appetite, low energy and poor concentration’ (WHO 2013).
Emerging literature (Lloyd 2010; Pouwer et al. 2010; Lloyd et al. 2012) into
emotional and psychological aspects of diabetes in culturally diverse groups largely
focuses on the prevalence of mental disorders, particularly depression. There is
epidemiological evidence that suggests at least one third of people with diabetes will
develop clinically relevant depressive disorders (Anderson et al. 2001, Pouwer et al.
2010) which can go unrecognised, under-reported and untreated. It has been
reported that people with diabetes are two to three times more likely to be
depressed than their non-diabetic counterparts (Lloyd 2010; Pouwer et al. 2010).
According to NICE (2009) recognising and managing psychological conditions can
be associated with improved function and better outcomes for those with long-term
diabetes. Das-Munshi et al. (2007) discovered that many people with diabetes
experienced generalised anxiety or anxiety related to specific aspects of the
condition such as glucose monitoring or administering injections. Gilbody et al.
(2006) found that cross-sectional surveys of depression showed people also
experience stress when trying to cope with the long-term condition. Whilst most
literature has looked at the measurable aspects of depression and diabetes, it still
remains under-diagnosed and under-treated (Katon et al. 2010).
Specific research studies focusing on emotional and psychological aspects in the
UK’s BME groups are scarce but more recent studies used screening tools to
measure depression (Lloyd et al. 2005; Roy et al. 2012; Lloyd et al. 2012). These
studies (Wagner et al. 2007; Lloyd et al. 2012) identified depression as a common
feature among the Asian population but there is limited reported research on the UK
Guyanese population. A number of tools such as Beck’s Inventory and Hospital and
Anxiety Depression (HAD) scale are used to measure depression with criticism
being levied at some for not accurately measuring the symptoms in different cultural
groups. The problems arise because the tools are developed for people from
Western populations rather than BME groups who present depression with culturally
bound symptoms such as somatic pains (Bhugra & Ayonrinde 2004).
As discussed the literature has focused predominantly on the biomedical model of
diabetes that considers the physical aspects of the condition. Studies have either
been systematic reviews or epidemiological in nature. Few studies have
concentrated on the lived experience of researching alongside those with a longterm condition. The lived experience is an important and relevant section of this
48
inquiry because it gives the participants the opportunity to voice their feelings about
the impact diabetes has on their lives.
Living with Diabetes
Early research from Bury (1982; 1991) described chronic illness as a biographical
disruption which encompasses a reassessment of a person’s self-perception,
personal biography and life trajectory including personal relationships and
questioning set assumptions. Bury (1997) further explained how chronic illness
affected the individual in wider social contexts when people become preoccupied
with managing the symptoms.
Whilst Bury’s work has been important and gives prominence to the layperson’s
voice, Williams (2003) critiques Bury’s concept of biographical disruption as a
biomedical approach couched in terms of an impaired body causing a disruption.
Faircloth et al. (2004) are also critical of Bury’s claims. They investigated sudden
illness and biographical flow in narratives of stroke recovery in a sample group of
middle aged male survivors from Non-Hispanic White, African American and Puerto
Rican backgrounds. Faircloth et al. (2004) argued that sudden illness can develop
into an enduring chronic illness narrative. They suggested that rather than focusing
on biographical disruption, narratives are a more useful way for people to talk about
their illness experience. Stamm et al. (2008) explored the narrative life stories of ten
individuals with rheumatoid arthritis. Participants were given the opportunity to give
meaning to their experiences of living with a long-term condition. The researchers
stressed the importance of the individuals being encouraged to be self-responsible
and showed that narratives gave voice to suffering and feelings beyond the domain
of the biomedical voice (Stamm et al. 2008).
Koch and Kralik researched alongside adult men and women who talked about their
experiences of living with chronic/long-term conditions (Koch 1998; Koch et al.
1999; Koch & Kelly 1999; Koch & Kralik 2001; Koch et al. 2002; Koch et al. 2004;
Koch et al. 2005; Visentin et al. 2006). These conditions covered a broad range
including multiple and complex diagnoses such as cancers, Crohn’s disease,
multiple sclerosis, asthma, arthritis, schizophrenia, HIV and diabetes. By allowing
the voices to be heard, these studies have provided greater insight and
understanding into the lives of individuals with a chronic illness.
Koch and Kralik (2006) consolidated a chronic illness research programme by
continually revising and validating the emerging constructs evolving from
participants’ stories. Two major constructs have emerged which are:
Extraordinariness and Ordinariness (Kralik 2002). Movement from preoccupation
with the self (extraordinary phase) to adaption of chronic illness symptoms into
one’s life (toward being ordinary) has been termed transition. Originally transition
was defined as a process of learning to take the consequences of living with a
chronic illness into one’s life and moving on. It cannot be assumed that everyone
moves on as some of the participants living with diabetes ignore diabetes selfmanagement, and a few studies show that people occasionally do not accept their
long-term condition until complications are evident (Kralik 2002).
49
Additionally Koch et al. (1999) conducted a PAR study with women living with Type
2 Diabetes. The aim of their study was to facilitate those voices being clearly heard
in relation to their health, to highlight people’s strengths in living with a chronic
illness and enable professionals to provide more responsive and consumer-focused
services. This particular PAR study by Koch et al. (1999) highlighted the
appropriateness of PAR when exploring the lived experiences of participants with
Type 2 Diabetes which is the focus of this inquiry. These authors argued that
biographical storytelling celebrated a mode of self-expression and individualised
versions of experience. The telling of one’s story as an intervention enables
participants to reflect, and learn to incorporate the consequences of living with a
long-term condition into their lives.
Living with a long-term condition is not easy for an individual because they need to
learn how to self-manage and increase their knowledge of the condition. Within the
context of diabetes, a key feature of the self-management programme is to enable
individuals to manage their diabetes on a day to day basis through effective
education (DH 2005). However individuals with diabetes need more than just
adequate knowledge. They need to feel empowered and in readiness to take on
board the information presented to them.
Self-management of diabetes
Literature on the self-management programmes originated from the work of Lorig
who contributed to a large body of knowledge that focused originally on selfmanagement of arthritis then extending globally to include chronic illness selfmanagement (Lorig et al. 1998). Lorig et al. (1999) conducted a randomised
controlled trial of 952 patients in California. This study is often referred to as one of
the best examples of how true partnership between the public and the health care
practitioners can be formed successfully. The outcome of this study led to a highly
structured programme by trained volunteers living with long-term conditions
teaching others to deal with common issues such as pain management, stress and
daily coping skills. A further study by Holman and Lorig (2000) focused on
partnerships as a prerequisite for effective and efficient care when managing
chronic disease. Lorig et al. (2009, 2010) completed later studies on selfmanagement of diabetes. Both of these later studies were still randomised trials,
(Lorig et al. 2009; 2010) which examined community based management
programmes and online diabetes self-management. The results showed an
improvement in the patient’s self-efficacy and patient activation. However these
claims were earlier disputed by Gately et al. (2007) who argue that increases in selfefficacy failed to produce the promised changes in self-management as the
participants did not reduce the need for medical care by changing their behaviour.
Whilst Lorig’s randomised controlled trials (Lorig et al. 2009; 2010) have strengths in
being pragmatic, measuring outcomes and cost effectiveness, when there is
engagement with individuals in an interactive space, additional methodological
approaches need to be considered to capture the individual’s voice.
50
Other programmes of self-management have been the Expert Patients Programme
and in more recent years DESMOND (Davies et al. 2008; Skinner et al. 2006)
previously mentioned in Chapter 2. These programmes are for people living with
Type 1 and Type 2 Diabetes. The Expert Patients Programme provided the platform
for individuals to develop knowledge of the condition including glycaemic control,
weight and dietary management and psychological well-being. This structured
national patient education programme emerged in the UK health policy (DH 2001;
Donaldson 2003) to build an individual’s expertise to become educated and
empowered in managing their long-term condition, the emphasis being on
developing knowledge relevant to maintaining the individual’s health.
The Expert Patients Programme was part of the UK government commitment in
1999 to place patients at the heart of health care. Those with long-term conditions
were encouraged to work in partnership with health and social care practitioners to
obtain greater control over their lives. The programme targeted newly diagnosed
and established patients. Wilson’s (2001) extensive review showed that the concept
of Expert Patient has been problematic from the start because it ignores
professional power and constraints, and assumes the individual’s compliance.
Health practitioners continue to cling to the power of controlling information and
dismissing the efforts that patients make to explain their condition (Wilson 2001).
A number of studies (Kennedy et al. 2005; Reeves et al. 2008) was conducted to
evaluate Expert Patients Programme implementation. Kennedy et al. (2005)
commenced the early evaluative work exploring the way the Expert Patients
Programme was implemented by PCTs and identifying key barriers and facilitators
to the implementation. This preliminary survey consisted of telephone interviews
with key personnel in primary care sites where the Expert Patients Programme was
initially piloted. 46 PCT leads and 19 trainers were interviewed. Secondary source
data such as PCT websites and literature promoting Expert Patient were examined.
The evaluation demonstrated initial success of the programme. One criticism was
that BME groups and areas of high deprivation were disinclined to participate,
increasing the potential for inequalities of care (Kennedy et al. 2005) and bias
against their views. Further studies focused on predicting programme beneficiaries
(Reeves et al. 2008) and cost effectiveness (Richardson et al. 2008).
In the UK, the DESMOND model launched in 2004 provided a structured group
based approach that encouraged individuals to self-manage. This package has six
hours community delivered teaching to groups of ten with accompanying relatives or
partners (Cradock 2005). The DESMOND educationalists are trained members of
staff, practice nurses or dieticians who emphasise that changing lifestyle is needed
to manage diabetes. The course lasts for either one full day or two half days.
Individuals attending the course share experiences and engage in games that
explore the sugar, fat and content of foods (Cradock 2005). The main drawback of
this programme relates to the lack of further follow up with the individuals following
completion of the course.
Davies et al. (2008) and Skinner et al. (2006) incorporated an empowerment
strategy based on social learning theory with an emphasis on patient involvement
51
within the DESMOND programme. This particular model has shifted away from
didactic medical education teaching to a more empowering approach encouraging
individuals to manage long-term conditions by strengthening and improving selfmanagement skills, self–efficacy and motivation. Pilot data has indicated the
DESMOND programme for newly diagnosed individuals changed important health
beliefs at three months.
A more recent study by Khunti et al. (2012) evaluated the effectiveness of the
DESMOND programme for the newly diagnosed diabetic. This three year
randomised controlled follow up trial showed that the six hour structured programme
in self-management did not offer sustained benefits to maintain glycaemic control
but noted some changes in the individual’s health beliefs. It was suggested by
Khunti et al. (2012) that a programme of on-going education is required as patients
may need further education and support to successfully manage their condition.
Whilst DESMOND has been a national programme, Stone et al. (2006) suggested
that it has not necessarily met the needs of BME groups. In their study, Stone et al.
(2006) implemented the DESMOND programme with Gujarati, Mirpuri, Punjabi,
African and Caribbean individuals living in three cities in the UK using a
collaborative action research approach. “Participants perceived cultural differences
were mainly related to food” (Stone et al. 2006: 624) but other identified issues were
that African and Caribbean communities wanted the DESMOND sessions to be
relevant to them. Attitudes to exercise were discussed and attention drawn to the
sedentary lifestyle amongst older people. Pictorial resources used received a
positive response. Participants requested advice on cooking methods, portions and
pressure to eat certain foods. Conclusions drawn from the Stone et al.’s (2006)
study showed that education sessions with ethnically diverse groups need to be
relevant and refer to foods consumed by each ethnic group when discussing cultural
diets.
Another self-management concern associated with the DESMOND programme is
the emphasis on a medical prescriptive approach that concentrates on
compliance/adherence which could lead to poor diabetic control. This is the focus of
the next section in this review.
Compliance/non compliance
A close examination of the literature (Stone et al. 2006; Khunti et al. 2012) on selfmanagement revealed a medical prescriptive approach that emphasised
compliance/adherence to directions provided by health care practitioners. The ‘self’
in self-management has been ignored and the person is objectified as the ‘patient’
(Koch et al. 2004). Compliance within this context has been defined as adherence
by the patient to directions given by the prescribing physician, and good compliance
has been considered as 80% adherence or greater (Keszthelyi & Blasszauer 2009).
Hicks (2006:.560) viewed it as a “disposition to yield to or to comply with the wishes
of others”. The individual abdicates responsibility for their care to the health care
practitioner, just follows instructions and is rewarded for being the ‘good patient’.
52
Traditional models of diabetes care relied on individual compliance leading to poor
diabetic control according to Macaden and Clarke (2010). Unfortunately the
biomedical view of compliance often fails to recognise the individual’s voice in
making decisions about their condition, therefore when treatment is either refused or
not complied with they are perceived as exhibiting non-compliant behaviour.
Keszthelyi and Blasszauer (2009) argue that from a medical perspective individuals
who do not comply with the doctor’s orders are seen as deviant and requiring
correction.
Earlier research on compliance has shown that neither the features of the disease,
the referral process, the clinical setting nor the therapeutic regimen seemed to
influence compliance (Anderson & Funnell 2000). Influences on compliance are
individual’s beliefs about medication and medicine in general, their knowledge,
ideas and experiences and those of family members and friends. Their attitude to
the disease and the doctor patient relationship also need to be considered and
dictates whether they comply with treatment or not (Wens et al. 2005).
Collaborative models of compliance have encouraged a paradigm shift to an
empowerment collaborative approach described as a new vision of diabetes
education (Anderson & Funnell 2000; Thomas 2004; Dunning 2005). This vision
insisted that when people live with a long-term condition, they are given education,
support, clinical care and monitoring in partnership with health care practitioners.
Self-management is then enhanced according to Holman and Lorig (2006).
Bordenheimer et al. (2002) argued that self-management is important when living
with chronic illness because of the improved chances for a rewarding lifestyle from
being educated about the condition to taking part in the care process. Selfmanagement has been reported as enabling people to minimise pain, share in
decision-making about treatment, gain a sense of control over their lives (Lorig &
Holman 1993; Barlow et al. 1999), reduce visit frequency to doctors and enjoy a
better quality of life (Lorig et al. 1998; Barlow et al. 2000). Despite the evidence of
cost benefits and improved health outcomes, self-management programmes only
reach a small number of people with chronic illness (Keysor et al. 2001).
It seems essential for me within this inquiry to adopt a person centred perspective
on the concept of self-management based on the evidence acquired when
researching alongside Guyanese women. Koch et al. (2004) further add to this
person’s perspective and give guidance why it is important to take on board this
concept when researching alongside women. They believe it is an active and
dynamic process of learning, trying and exploring the boundaries created by illness,
and it fluctuates as life and illness present new challenges (Koch et al. 2004).
Individuals with diabetes often consult complementary practitioners when selfmanaging due to the impact of the disease on quality of life and the possibility of
severe complications (Spencer & Jacobs 1999). The next section considers
complementary and alternative medicine (CAM) literature when self-managing
diabetes.
53
Use of complementary and alternative medicine (CAM) in
managing diabetes
The more familiar biomedical model of disease takes a reductionist approach and
focuses on a single medical problem within the individual. This dominant approach
is based on facts and aims to cure disease. Biomedicine often sees the mind as
separate from the body, thus separating the ‘body’ from the ‘person’ (Greaves
2004). Consequently many individuals with diabetes will opt for alternatives such as
CAM to self-manage their diabetes. They seek complementary therapies to lower
blood glucose levels, decrease dosage of oral hypoglycaemic agents and decrease
insulin resistance.
The term CAM is the general explanation that is given to a group of therapies,
practices and approaches to health care that are found outside of conventional
medicine (NLH 2005). The Cochrane collaboration also describes CAM as all such
practices and ideas outside the domain of conventional medicine and defined by its
users as preventing or treating illness, or promoting health and well-being. These
practices complement mainstream medicine by contributing to a common whole and
satisfying a demand not met by conventional practices.
There are noticeable differences between complementary medicine and alternative
therapy. Complementary medicine supplements conventional biomedical treatment
and includes therapies such as herbalism, aromatherapy, hypnotherapy, massage,
acupuncture and reflexology. Alternative medical systems consist of Ayurvedic
medicine and traditional Chinese medicine. The National Library for Health (NLH)
(2005) suggests these systems provide alternatives to conventional biomedicine
and include diagnostic systems and treatments for the full range of conditions
impacting on global health and well-being.
Research in the field of CAM (Chi-Wai Lui et al. 2012) highlights that many
individuals use CAM to cope with the daily challenges of diabetes and associated
complications. A review of the literature relating to Guyanese use of CAM revealed
no existing studies. However there are international studies (Hunt et al. 2000; Poss
et al. 2003; Awah et al. (2008); Chacko 2003) that examine the use of CAM among
BME groups living in Western and developing societies. They have used CAM such
as home remedies, food remedies, herbs, healers and spiritual practices to treat
their condition.
Two descriptive studies of Mexican American people living with Type 2 Diabetes
(Hunt et al. 2000; Poss et al. 2003) explored complementary treatments for
diabetes. Hunt et al. (2000) showed that in everyday practice, participants draw on a
variety of complementary systems. They used herbs for controlling blood sugar and
prayer to reduce stress. They saw medical treatment as the vehicle through which
God would heal them. There was no evidence that they turned to traditional healers.
They felt God worked through the clinician and medications, not in place of them.
Poss et al. (2003) discovered in their study that the participants were taking both
prescribed oral medication and injected insulin in conjunction with traditional
54
Mexican folk remedies for Type 2 Diabetes. Several of the remedies used were
composed of multiple herbs.
However a review of herbal medicine by Linde et al. (2001) showed there is limited
evidence regarding the effectiveness of herbalism as practised by specialist
herbalists who combine herbs with unconventional diagnosis. Linde et al. (2001)
reviewed a range of research articles including those for lowering blood glucose.
For some of the herbal preparations, they felt the evidence was promising but
further studies are required to establish efficacy.
Awah et al. (2008) took a more sophisticated look with an ethnographic approach
and revealed the complex web of understanding that influenced compliant
behaviour within a group of individuals from the Cameroon with diabetes.
Participants in this study displayed negative feelings towards biomedical care and
treatment that comprise mainly of medication. They supplemented their visits to the
health care providers with visits to traditional healers but realised that diabetes
could not be cured.
The findings from Scott’s (1998) UK study on lay beliefs and management of
diabetes among West Indians showed that prayer or invoked spiritual assistance
was an important component of care in coping with the condition. A variety of
complementary treatments were used alongside the biomedical system, such as
bush teas, bitters, evening primrose oil, fresh garlic and garlic tablets, laxatives and
water to ‘wash’ sugar out of the blood.
Chacko (2003) investigated the use of alternative therapies to manage diabetes in
an urban population in Southern India. This small-scale qualitative exploratory study
showed that the participants relied on biomedicine for treating diabetes but
frequently used Ayurvedic medicine and folk herbal remedies in maintaining good
health. Ayurvedic medicine within this context is based on Hindu philosophy and is a
holistic and sophisticated system which encompasses balance of the body, mind
and spirit as well as balance between people, their environments and the larger
cosmos. Chacko (2003) believed on account of her findings that the use of local
therapies and their effectiveness warrant further examination.
Manya et al. (2012) conducted a more recent small scale cross-sectional survey to
establish the use of CAM among people living with diabetes in Sydney. The main
aim of their study was to identify the prevalence and type of CAM usage. The
results showed that individuals with chronic disease often believed in spiritual
practices and frequently used CAM to treat diabetes but individuals born overseas
were significantly more likely to use it.
While some CAM therapies have particular benefits for individuals regardless of
ethnic origin, many continue to access and use treatments alongside the biomedical
approach (Manya et al. 2012). The side effects can give rise to concern. Diabetes
UK (2008) acknowledged that, whilst complementary medicines are popular, some
had not been tested or regulated like conventional medicine. Spencer and Jacobs
(1999) and O’Connell (2001) echoed these views and agreed that limited
information existed regarding standardisation of preparation, correct dosage
55
antidotes or risk warnings of herbal medicine. Yet CAM users have strong negative
opinions about conventional medicine regardless of the risks associated with CAM.
Some mistrust institutions and new technologies and view conventional medicine as
impersonal. They believe CAM has an important role to play in the management of
their condition (Manya et al. 2012).
Conclusion
In this chapter I have reviewed the literature relevant to the research question. Only
Tillin et al. (2012) commented on the increase of Type 2 Diabetes among women
from the BME communities. Whereas three of these studies concentrated on the
wider population in the UK and one study focused primarily on White Caucasians.
The literature identified the increase in the ageing population, obesity, unhealthy
diets and lifestyle changes which have led to an increase in Type 2 Diabetes
especially those who may have specific complications for example hypertension. In
Guyana the age range for developing Type 2 diabetes is much younger and this is
highlighted also in Back et al. (2012) who identified a much younger Indo Guyanese
age group with Type 2 Diabetes living in New York. It is highly significant to have
included this study in this literature review because Guyana has a large Indo
Guyanese population who migrated to the UK, Canada and America. However due
to the paucity of research on participants in this inquiry, reliance is placed on policy
that focuses on other BME communities in the UK.
The lived experience of individuals with long-term conditions is a distinct area of
research which gives insight into how they cope and give them a voice to talk about
their experiences of living with the long-term condition. The literature on various
programmes of self-management such as the Expert Patient and DESMOND
showed that these programmes are under-utilised by BME communities hence the
inclusion in the review.
The literature identifies psychological issues such as depression that are largely
unrecognised among BME communities with Type 2 Diabetes. The studies have
shown that tools used to diagnose depression may not be culturally sensitive or
appropriate for the different ways psychological symptoms are manifested.
The review shows health care practitioners/professionals play a key role in helping
those from BME communities cope with long-term conditions, but need to work in
partnership with them. The literature indicates that they need to learn more about
BME communities’ CAM beliefs and practices alongside the biomedical approach
and recognise the cultural importance of diet. Moving away from the prescriptive
compliance model to an empowering and collaborative approach enhances selfmanagement strategies particularly in the BME communities.
There is definitely a gap in the literature regarding Guyanese and Type 2 Diabetes
as I previously identified only one research study pertaining to this BME group.
There is limited information about them as a BME community and tenuous links are
made with African Caribbean and South Asian communities when in reality
Guyanese as a multiracial group comprises many races. The race profile of Guyana
56
is discussed in the context chapter. Therefore to fill the gap that is missing from the
literature and to conduct a study that I feel would be relevant and add to the body of
literature about Guyanese, I decided to explore with Guyanese women from a BME
community who migrated to the UK during the 1950s, 1960s and 1970s, their
experiences of living with Type 2 Diabetes. That particular time span was chosen as
the primary influx of Guyanese to the UK occurred during that time period.
To consider the gap that current studies have largely ignored, the research aim and
objectives are presented below:
Research aim and objectives
Aim

To explore with Guyanese women living in the UK their experience of living
with diabetes.
Objectives

To give voice to the stories of Guyanese women.

To explore their experiences living with diabetes in the context of their
Guyanese background.

To facilitate a participatory action research group and in collaboration with
participant women explore self-care diabetes trajectories.

To consider ways ‘we’ (women and researchers) can initiate changes at an
individual level and/or within the Guyanese community living in England.
In the next chapter, the focus is on the philosophies and other approaches that drive
this inquiry. My position as a researcher, and assumptions made in developing the
theory will be debated.
57
Chapter 4
Principles Guiding this Participatory
Action Research Inquiry
58
In this chapter, I provide a rationale for choosing PAR as a methodological
approach to give voice to Guyanese women with diabetes. I highlight the principles
and philosophies underpinning this PAR inquiry. The philosophies include Montero’s
(2000) explanation of social reality, Heron and Reason’s (2006) discussion on
knowledge creation, Koch and Kralik’s (2006) participative worldview, Habermas’s
(1972; 1984) social theory of communicative action that assumes to advance the
goal of human participation strengthened by Berger and Luckmann’s (1991) social
construction of knowledge. Then I cover a range of action research models
including those operating without participation as a central component. Finally I
argue for a research approach in which storytelling and participation are central. I
then describe the principles that will guide this inquiry.
Positioning of the PAR researcher
I am a Guyanese woman who wants to research alongside Guyanese women,
acknowledge each woman’s individual experience, give them a voice and recognise
aspects of the women’s experiences that may not be explored by other
methodologies. These women, like me, have experience of migration and a colonial
past and I feel our voices as Guyanese women living in the UK have not been
heard. My participative world view had been developed as a result of my work as a
community psychiatric nurse in the 1980s with individuals, especially women, with
mental health problems and championing their cause for improved community
mental health services. In addition, I developed a particular interest in feminism
when I completed a Women’s Studies Master’s degree in the early 1990s. “Being
heard and given a voice” were phrases commonly used and I firmly believed in the
feminist slogan ‘personal should be made political’. I believe in equality for women
which became another slogan for me.
Although I was born in a former British colony, I had not fully appreciated the effects
of colonialism or post colonialism on the individual living in a colony and the impact
it can have on an individual’s identity. I gradually became enlightened by reading
the literature by theorists of post colonialism such as (Said 1978 and Spivak 1990)
who have contributed to my understanding of the period after colonialism. There is
already some discussion on the terms colonialism and post colonialism in Chapter 2
but I feel it is important to disentangle what happens to an individual from a former
colony when they migrate to the ‘mother country’, and the impact that this can have
on their lives. The effects of colonialism do not cease because the transportation of
indentured labour and slavery happened in the past but continue to affect the group
in various ways, for example, national identity. Macleod and Bhatia (2007) argue
that all postcolonial societies are still subject in one way or another to subtle and
hidden forms of colonial domination.
One way of trying to resist this domination is to develop a national identity but I
particularly liked the seminal work of Childs and Williams (1996) that suggests it is
difficult to shed the colonial identity and develop a national identity after colonial
rule. They suggest individuals ask questions such as “who are we” when trying to
develop an identity, the formation of which should be encouraged either by writing
or telling one’s history. Telling one’s story is similar in some respects to telling one’s
59
history because it begins with a story of self that includes expressing feelings of
national pride and identity (Childs & Williams 1996). Storytelling therefore became
my rationale for selecting PAR that concurred with my belief of storytelling as a
vehicle for human encounter and communication. I was acutely aware that
Guyanese people liked telling stories so felt this approach would suit them as a
BME group. I wanted them to tell their stories of living with Type 2 Diabetes and
encourage them to feel fully involved with this process so that we shared a
commitment to collaborate and create realistic and culturally sensitive knowledge.
Over a period of time, I have become aware of the contribution feminism has made
in empowering women to collaborate in research and increase their understanding
of how they can be oppressed in a patriarchal society. Feminism gives women a
voice to air their views and opinions in a public arena. Guyanese women as a group
have not had the opportunity to talk about their lives or their diabetes; therefore my
aim in this inquiry is to empower them to tell their stories, share their experiences
with each other, produce knowledge and any action they feel is beneficial to them.
The key feminist writers who have influenced my thinking are Reinharz (1992),
Wilkinson (1998), Olesen (2005) and hooks (2000) who have all refused to accept
theory and research that devalues women’s lives and experiences. They believed
that feminist projects put the spotlight on women to make them more visible. Olesen
(2005) proposed that feminist research generated new ideas to produce knowledge
for actions or further research questions about oppressive situations for women. It
seeks a methodology that supports research leading to social change or action
beneficial to women (Olesen 2005). However, I particularly favoured the work of bell
hooks regarding the way she felt white feminist writers have marginalised the voice
of non-white women in society. hooks (1984; 2000) reminds us that some feminist
writers have largely ignored the plight of non-white women and have not necessarily
devoted the time and space for their interests and needs. In hook’s (2000) text she
analysed the challenging issues that feminists face and demanded alternatives to a
patriarchal, racist and homophobic society.
In more recent years, feminism has merged with PAR to form feminist participatory
action research (FPAR) (Maguire 2006; Reid 2004; Reid et al. 2006).This advocates
that all women must be involved in all stages of the research process including
interpreting and acting on the results. Maguire (2006) gives a different perspective
and is more inclusive of all women in FPAR. However; it is a fairly new branch of
feminist research. Maguire (2006) proposed that FPAR catered for all female groups
hence the attraction for me but this approach will be discussed later in this chapter.
It is difficult to escape the feminist influence in this inquiry but I need to
acknowledge that each Guyanese woman in this inquiry is an individual and the
intention is to give them a voice and justify why women have been chosen (see
Chapter 2).
As a researcher I need to commit to honouring the participants’ lived experience
and ensure that the collaboration between us is genuine (Reason 1994). Doing any
form of participatory research inevitably changes you, sometimes painfully,
sometimes in exciting and sustaining ways (Gatenby & Humphries 2000). I therefore
60
need to create a space for mutual reflections with the participants as the basis for
action (Reid et al. 2006). I also need to consider how a shared Guyanese/English
background with the participants in the inquiry has the potential to influence data
generation and could potentially make me blind to difference. This influence will be
discussed in more detail in Chapter 7.
Action Research
Historically action research can be traced back to the nineteenth and early twentieth
century (Masters 1995). Action research is known by other names including
participatory research, collaborative inquiry, emancipatory research, action learning
and contextual action research, but all are variations on a theme. A more succinct
definition by Reason and Bradbury (2006: xxii) is:
‘Action research is ... primarily a liberationist practice aiming to redress
imbalances of power and restoring to ordinary people the capacities of selfreliance and the ability to manage their own lives – to ‘sharpen their minds’.
The primary issues are about creating change and influencing policy decisions
... and for some is primarily a form of practice or for others it belongs to
knowledge generation’.
Action research is separate from other types of research in that its focus is on
turning the lay people involved into researchers; Reason and Bradbury (2006)
assert that people learn best and are more willing to apply that learning when they
do it themselves. Action research has a social dimension as the inquiry takes place
in real world situations and aims to solve real problems (Reason and Bradbury
2006).
Evolution of Action Research
Specific historical and philosophical influences originate from the Science in
Education Movement of the 19th/20th century in which the scientific technical
method of action research was applied to education, especially the work of Boone
(1904) and Buckingham (1926). Other known proponents of action research were
Collier (1945) and Lippitt and Radke (1946) pioneering authors who were social
reformists. In the 1940s, the theories of Lewin, a German social and experimental
psychologist now considered the father of traditional action research, encompassed
the concepts and practices of Group Dynamics (Lewin 1947); Field Theory (Lewin
1942) and T-groups (Lewin 1947). The growing importance of labour-management
relations led to the application of action research by Lewin in specific areas of
organisational development, quality of working life and organisational democracy.
Lewin (1946) described action research as a series of spiral steps composed of a
circle of planning, action and fact finding regarding the result of the action. Trist
(1981) was another contributor to the field of action research from the post-war era.
He was a clinical psychologist who became a founder member of the Tavistock
Institute of Human Relations and was influenced by Lewin who was also a member
of the institute. Trist engaged in social research for repatriation of German prisoners
of war with their serious emotional problems in reconnecting to civilian life.
61
Contextual action research, also referred to as action learning, is derived from
Trist’s work on relations between organisations. Both Lewin and Trist emphasised
direct professional-client collaboration and affirmed the role of group relations as a
basis for problem solving. Both were proponents of the principle that decisions are
best implemented by those who help to make them. Educational action research
has its foundations in the writings of Dewey, the American philosopher of the 1920s
and 30s who believed that professional educators should become involved in
community problem solving (Dewey 1929). Practitioners of this form of action
research focus on the development of a curriculum, professional development and
applying learning to a social context.
Action research within this earlier context focussed less on the collaborative and
participatory nature of research (Lewin 1946). PAR, or co-operative inquiry which is
another name for participatory action research, changed that narrow focus of the
earlier perspectives. PAR differs in relation to other variations of action research but
there are similarities because the word ‘action’ is common in all variations. Action
denotes learning by doing - when a group of people identify a problem, do
something to resolve it, see how successful their efforts have been and if not
satisfied, try again (Koch 2006). The strength in PAR lies in the collaborative
process between researcher and participants (Wadsworth 1998; Kemmis &
McTaggart 2005; Kidd & Kral 2005).
What is participatory action research (PAR)?
Participatory action research (Baum et al. 2006; Dick 2004; Reason & Bradbury
2006) is used in developing countries and a range of other settings where the focus
is participation of all stakeholders, emancipation and self-determination toward
reform. Koch and Kralik (2006) sum up PAR as:

a social process where building relationships in order to research with
participants is crucial

engages people in examining their own knowledge (understandings, skills
and values)

practical

collaborative

reflective as it helps to investigate realities in order to change them
There are similarities between the Koch and Kralik’s (2006) and Kemmis and
McTaggart’s (2005) approaches, as each interactive step of the PAR process is
taken collaboratively with the participants. Relationship building is central to the
process and often requires extended time in the field. PAR approaches share some
commonalities with each other where researchers aim to reform, improve, remodel
or restructure a situation. PAR can provide participants with the means to take
systematic action in resolving specific problems, setting the agenda for discussion,
prioritising issues pertinent to group needs and deciding on actions (Koch & Kralik
62
2006). Koch and Kralik’s (2006) PAR approach being used for this inquiry employs
collaborative storytelling and group processes interchangeably. Consequently I
remain firmly committed to utilising this participative methodology with Guyanese
women living with Type 2 Diabetes who have largely been absent from producing
dominant forms of knowledge.
Commonalities in participative methodologies
Heron and Reason (2006) capture what I believe participative methodologies have
in common when they talk about co-operative inquiry. They describe this type of
action research as a way in which all participants work together as co-researchers
and as co-subjects in an inquiry group. The emphasis within this kind of inquiry is to
research with people and not on people.
The concept of ‘participation’ is a core component in any participative methodology
and it is essential that participants decide the agenda and actions relative to the
situation or practice, and, in collaboration with the researcher, work towards
‘reforming, improving, re-modelling or restructuring (Koch & Kralik 2006). It is
important that researchers, in partnership with communities, are clear about the
level of participation that is present and where the power lies. Arnstein’s (1969)
seminal work laid the foundation for this form of community participation and
promoted user involvement that became a bench mark for describing and evaluating
participatory activities. Arnstein (1969) suggested that there are different levels of
participation, which she likened to a ladder with a series of steps/rungs (see Figure
2.) that citizens or users within controlling organisations try to move up whilst
making decisions. It demonstrates that decision making is not an easy process
unless true partnership takes place. ‘Citizen control’ is at the top of the ladder
followed by delegated power and partnership. Citizen power can influence the
decision making process but true partnership takes place when citizens hold power
through shared decision making. Arnstein (1969) makes a clear distinction between
citizen power, engagement and tokenism. Tokenism includes placation, consultation
and informing where in a one way flow of information and communication, citizens
have a voice but no power to make decisions. The final steps of therapy and
manipulation are grouped as non-participation with the aim of educating citizens.
Arnstein (1969) reminds us that participation is about power and control and she
believed that it could be applied to any situation where participation is key.
63
Citizen Control
Citizen
Power
Delegated Power
Partnership
Placation
Consultation
Tokenism
Informing
Therapy
Manipulation
Non
Participation
Figure 2: Arnstein’s Ladder of Participation (1969)
Tritter and McCallum (2006) are critical of Arnstein’s (1969) ladder because they
feel that the sole measure of participation within this user involvement model is
based around power to make decisions and seize control when engagement is
required. However failure to differentiate between method, category of user and
64
outcome is missing from the model. Tritter and McCallum (2006:162) believe
“Arnstein is vague about the methods adopted to involve users and see no
relationship between the aims of involvement exercise, users who participate and
the methods adopted to involve them”. It appears that its application to health care
can be problematic due to its failure to meet the needs of service users as it does
not reflect the various forms of participation required for decision making in that
setting.
In my reassessment of the participation process, I refer to Arnstein’s (1969) ladder
due to its user involvement and the need to consider the different degrees of
participation when individuals are involved in a decision-making process in PAR. I
have given some consideration to the views held by Tritter and McCallum (2006)
who consider that Arnstein’s model is problematic when applying it to health related
decision-making. However, I believe Arnstein’s ladder provides a good framework
for checking the degree of participation. The literature suggests that the PAR
process can empower individuals to make decisions because it breaks down
boundaries between the researcher and the researched, allowing participants to
drive the research process and explore situations pertinent in their lives.
Participants make decisions about the research process but it can take time to learn
to trust themselves, the researcher/facilitator and the PAR process (Koch & Kralik
2006).
Feminist participatory action research (FPAR) integrates participation with feminist
theory and research (Reid 2004). I have already made reference to feminism earlier
in this chapter but it is important to mention it in this context because of its
appropriateness in working with female marginalised groups. Maguire (2006)
identified that early participatory researchers failed to include the insights of
feminism into action research. Maguire (2006) has been critical of the male
orientation of PAR in which women and gender issues have been ignored,
minimised or marginalised. Instead, those using FPAR consider the needs of
women who have been traditionally silenced. FPAR is committed to making
women’s voices more audible through the facilitation of ordinary talk; however Reid
(2004) identifies that both feminism and PAR share the mutual cycles of reflection
and critical reflection.
Recently Reid (2004) and Reid et al. (2006) demonstrated the way in which a FPAR
framework was developed and their model included five principles that can be
incorporated into the research process: inclusion that considers women’s
experiences as central; true collaboration with participants identifying who is or is
not participating; individual and collective action to improve the participants’ wellbeing; social change that remains poorly understood but aims to redistribute power
to participants’ communities and researcher reflexivity that advocates openness and
transparency regarding the choices made throughout the study. I find these
principles appealing and considered them in this inquiry.
There are some similarities with FPAR and PAR as Gatenby and Humphries
(2000:90) postulate: at first glance, the ideals, and methodology of PAR seem to fit
well with the values, theoretical and practical concerns espoused within most
65
feminist research, particularly that which emphasises emancipation, participation
and collaboration.
The main difference I have observed between PAR and FPAR is that PAR involves
both women and men in its collaborative practice whereas feminist participatory
action researchers research alongside women almost exclusively. Despite the
difference in emphasis between PAR and FPAR, I am committed to Koch and
Kralik’s (2006) version of PAR, as previously discussed, precisely because its
storytelling component is culturally relevant for this group of Guyanese women who
have not yet had a voice.
I recognise that the PAR process requires me to build and work towards sustainable
relationships with my participants. These are skills and attributes that I need to learn
in order to become a facilitator/researcher of this inquiry. Being Guyanese will assist
relationship building. I wanted to initiate a research project with Guyanese people
living in the UK because diabetes appears to be a serious concern for this BME
group (Ramsammy 2011). I am eager to embark on a PAR inquiry that will
contribute new knowledge using a collaborative research methodology having
participation at its core.
Philosophical underpinnings
Specific theorists (Heron & Reason 2006; Montero 2000; Koch & Kralik 2006;
Habermas 1972; 1984 and Berger & Luckmann 1991) have guided my knowledge
and understanding of the philosophical underpinning of the PAR approaches. I
approached this part of the PhD as a novice having to grapple with a range of
theories and viewpoints to understand the way knowledge is created in participatory
inquiries. My reading of these theorists’ work has helped me to question my
assumptions and to explore the way in which knowledge is generated in PAR. Guba
and Lincoln (1989) laid the foundation for me in defining what is meant by the
philosophical terms ontology and epistemology. They suggest that ontology refers to
the person’s social reality about what exists and questions “What does it mean to be
a person?” Epistemology refers to theories of knowledge but similar questions are
asked for example, what can be regarded as knowledge and how is it created
(Guba & Lincoln 1989)?
Montero (2000:135) provides some of the answers in clarifying that “the ontological
perspective in PAR has the capacity to accept the other and “it is only by accepting
otherness of that person that the full possibility of a dialogue, a fundamental
condition for PAR is established”. Montero (2000) further discusses the meaning of
social reality in PAR and identifies how the different types of change occur when an
individual views the world. Her perspective on the participatory character in PAR
leads to several types of change. Montero (2000:135) claims “this entails a change
in how society is viewed; its compositions, its divisions, its institutions are subject to
a different look from different perspectives. New looks, sometimes critical,
sometimes cynical, sometimes disgusted, sometimes despaired and sometimes
optimistic emerge “.
66
Heron and Reason (2007:366) introduced the “epistemological dimension of human
knowing in the inquiry which involves: group members working together through
cycles of action and reflection, developing their understanding and practice by
engaging in what we have called an ‘extended epistemology of experiential,
presentational, propositional and practical ways of knowing”.
Heron and Reason (2007) summarises these four different ways of knowing as
participative epistemology. Experiential knowing occurs when there is a direct
encounter, for example a face-to-face meeting. Presentational knowing emerges
when symbols of graphic, plastic, musical and verbal art forms are used which
articulate our experience. Propositional knowing is achieved when the individual is
able to master theories and concepts. Finally practical knowing is based on knowing
how to complete something, either a skill or competence, which leads to a sense of
accomplishment. Heron and Reason (2007:367) argue that these “four ways of
knowing will be more valid if they are congruent with each other: if our knowing is
grounded in our experience, expressed through our images and stories, understood
through theories which make sense to us and expressed in worthwhile action in our
lives”, this epistemological perspective will give me an insight into how knowledge
can be created in PAR. I therefore need to listen to Guyanese women’s voices and
anticipate that they will bring new knowledge to this inquiry.
As my intention is to use Koch and Kralik’s (2006) PAR methodology, it is important
to note the way in which that has influenced my thinking. Koch and Kralik (2006)
share a similar participative worldview that drives their PAR processes even though
they hold different positions. Koch was guided by Guba and Lincoln’s (1989)
philosophy in ‘Fourth Generation Evaluation’ that requires all stakeholders to have a
say in the services and structures that impact on their lives, whereas Kralik holds a
strong feminist perspective. Both authors believe that people should be enabled to
construct and use their own knowledge (Koch & Kralik 2006). These authors drew
on Freire’s (1970) work in that empowerment of people is desirable through the
process of constructing and using their own knowledge. In this way facilitators can
assist participants in identifying their own needs and formulating their own strategies
in meeting those needs (Koch & Kralik 2006). Freire was a leading and inspirational
educationalist in South America in the 1950s who researched with disenfranchised
students and participants to place life-transforming capabilities in their hands. His
research falls into the category of critical emancipation that provides evidence from
a social perspective that working collaboratively alongside people enables them to
develop a new awareness of self which can then respond to change (Freire 1970).
Another critical theorist that influenced my understanding of knowledge creation is
Habermas (Habermas: 1972; 1984). His theoretical thinking is focused on
emancipation and, like Freire, Habermas’s work on social theory advances the
goals of human participation, communicative action and entails a theory about
dialogue as individuals meet in conversation. Habermas argued for the
democratisation of research and wanted to encourage those excluded from the
process to have a voice. Consistent with Habermas’s worldview is that PAR is
motivated by a desire to secure authentic information (new knowledge) about
67
people and situations that embraces experience as a source of legitimate
knowledge.
It is important to understand the way in which individuals construct knowledge. I was
influenced by social constructionists and believe their standpoint is congruent with
my participatory worldview. Stainton-Rogers (2006) suggests that social
constructionism is an epistemology that focuses on the individual as a socially
constructed being and on the processes of social interaction by which individuals
make sense of the world. The social constructionist approach views knowledge as
being constructed through people’s meaning making. This viewpoint accepts that
there are multiple realities and knowledge according to Stainton-Rogers (2006), who
raises a number of questions about knowledge; what does it do; how can it be used
– by whom and to what ends; whose interest does it serve; what does it make
possible; what counts as valid knowledge and what other discourses are referred
to?. I chose to build on Stainton-Rogers’s questions about knowledge and was led
by Berger and Luckmann’s earlier classic text (1991), which entailed an explanation
of social constructionism.
Berger and Luckmann (1991) define the nature and construction of knowledge as
created by interactions of individuals within society. These interactions can take the
form of language where there is shared meaning and understanding and can
provide a means of constructing the way the world is experienced. The Guyanese
women will make sense of their world via the construction of their experiences of
living with Type 2 Diabetes. They will make sense of their experiences of living with
a long-term condition through their storytelling and collaborative interactions with
each other and the researcher within the group sessions. Their stories will be social
constructions.
Whilst I have included philosophies underpinning critical theory and social
constructionism as key influences in this inquiry, I recognise that there could be a
tension between these two viewpoints. Denzin and Lincoln (2003:249) propose that
“critical theorists seek to produce practical, pragmatic knowledge that is cultural and
structural, judged by its ability to produce action”. In contrast social constructionism
considers meaning-making /sense making activities within a dialogue that shapes
action (or in action) (Denzin & Lincoln 2003). I feel the call for action is less fixed in
social constructionism whereas critical theorists have always advocated varying
degrees of social action (Lincoln & Guba 2003).
In summary, knowledge creation in the PAR process is complex. However PAR
enables individuals to examine their own knowledge, skills, and values, and as a
facilitator, I can stimulate critical reflection. As participants critically reflect on their
knowledge, enhance or develop the ability to interpret that information themselves
they may seek out actions in the social world (Kemmis and McTaggart 2005). As
knowledge is shared, reflected on and discussed with others, lives may change as a
result. When space and time is given to individuals to participate and reflect on their
experiences, actions may result. In the next section I present a rationale for
selecting Koch and Kralik’s PAR process.
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Rationale for selection of Koch and Kralik PAR
process
My rationale for selecting Koch and Kralik’s research process is its distinctive
storytelling as part of the PAR methodology. I knew little about PAR prior to a
chance meeting with Professor Koch in 2009. My PhD research question seemed
to match this methodology as I heard about a programme of research with people
living with a chronic illness that used PAR. I heard that Koch and Kralik’s (2006)
adaptation of PAR is based on Stringer’s (1999) ‘look, think and act’ analytical
framework. This PAR process quickly became the favoured one for my inquiry
researching alongside Guyanese women living with Type 2 Diabetes. Koch and
Kralik’s (2006) version of PAR comprises two interactive phases: the storytelling
component and the PAR group process. In addition the cyclical nature of the PAR
process promotes reflection and reconstruction of experiences and stories that can
lead to enhancement of individuals’ lives either as an individual; community or both.
Storytelling in PAR
As previously mentioned the combination of storytelling and the PAR group
components used in Koch and Kralik’s methodology concurred with my belief that
this process would be culturally acceptable to Guyanese women. I viewed
storytelling as a vehicle for human encounter and communication. In my own
experience, I was acutely aware that Guyanese people liked telling stories so felt
this approach would suit them. I wanted them to tell their stories of living with Type 2
Diabetes and encourage them to be fully involved with this process.
After reading the topic of storytelling (Mattingly & Garro 2000; Frank 1997) I
understood how a story emerges through the pull and push between the storyteller
and the world in which it is told. Stories are products of language; so many versions
can be constructed and reconstructed to meet the situations we encounter. We tell
stories with the guidance of memory and future hopes and fears (Holloway &
Freshwater 2007). Koch and Kralik focus on the experience of chronic illness and
understanding and consider how individuals incorporate the symptoms and
consequences of their illness into their lives through storytelling. Storytelling
seemed appropriate for this type of inquiry with Guyanese women with Type 2
Diabetes which I read about in more than 40 separate studies for example, (Koch
1998; Koch et al. 1999; Koch & Kelly 1999; Kralik et al. 2004, Koch & Kralik 2001;
Koch et al. 2002; Visentin et al. 2006). These authors had produced rigorous,
methodological guidelines for researchers when using storytelling.
PAR group process
In addition to one to one storytelling, the researcher researches alongside
participants in the PAR group sessions. As the researcher, I would adopt the role of
facilitator in the PAR group process (Koch & Kralik 2006; Stringer 1999) by assisting
participants to make their experiences accessible for reflection, discussion and
reconstruction. I understood that PAR groups create movement. In terms of
69
process, I was reminded that whilst researching, the researcher asks: “what is
happening in this group, what has the participant chosen to talk about and what is
important here?” These data are recorded, analysed concurrently and all
observations are provided to participants for feedback. The learning process can be
observed in what people do and how they interact with each other, what they mean,
value and the language used. Facilitation is important in this PAR group process
because participants are encouraged to take control, decide the agenda and take
ownership of the results. The PAR process and role of the facilitator is discussed in
more detail in Chapter 5.
I have clearly demonstrated my rationale for selecting PAR based on the work of
Koch and Kralik (2006). The principles guiding PAR will now be interrogated. These
principles of social justice, social equity, and freedom of speech and a strong
awareness of human rights resonate with my own beliefs and values. The principle
of facilitation is also fundamental in PAR research as participants are encouraged to
play an active role in the research process and this speaks to my feminist leanings.
Evaluation and rigour in PAR
It is important for me to evaluate the PAR process as a researcher, demonstrate a
rigorous process and articulate what has been learnt. During the PAR process,
evaluation criteria demonstrate success when participants express a strong sense
of self development and evolution in their practices. They show an increased
understanding of their personal situation and the group initiates action leading to
reform. Rigour may be evaluated by the willingness of participants to participate and
researchers examine what happens whilst researching by recording and analysing
their reflections as a data source (Koch 1994; 2006). Data generated are returned to
the participants for their validation and input. The feedback cycle in PAR ensures
that any issues identified by participants are acknowledged so misunderstandings
are corrected and refinements made. For research outcomes to have credibility and
to be meaningful to others, the research pathway needs to be transparent and
available for scrutiny.
For the findings to be valid and reliable, I need to demonstrate a clear audit trail.
The research trail is a set of reasoned decisions about questions to explore and
those to abandon, what to include and what to leave aside, what direction to take or
not take (Koch 2006). To consider whether PAR’s work is rigorous, it is necessary to
ask if the inquiry is accessible, makes a difference and is sustainable. Rigour in
PAR may be evaluated by the willingness of the participants to act. These are
issues associated with the quality of the research and as Koch and Kralik (2006)
point out rigour and quality of PAR are co-dependent which is discussed in Chapter
5.
Principles guiding PAR and this inquiry
Earlier I identified Reid’s (2004) principles and will consider them in order to guide
this inquiry. They include inclusiveness, collaboration, fostering collective action
toward social change and an awareness of power distribution. I will adhere to the
70
researcher’s reflexivity that advocates openness and transparency regarding the
choices made throughout the inquiry.
In addition, I will be guided by Koch and Kralik’s principles outlined in their 2006
text. They embrace social justice, social equity, and freedom of speech and an
awareness of human rights. The methodology selected provides a democratic and
collaborative research approach involving facilitators/researchers’ and participants’
cultural practices equitably. Cultural sensitivity demands that the researcher spends
time in the field to understand specific cultural practices and to be sensitive to the
diverse ways that culture is demonstrated and celebrated. Koch and Kralik’s
principles resonate with the way I interact with people as a mental health nurse and
nurse educator as I also faced inequality and unfairness in my personal life as a
Guyanese person and a woman. I empathise with the participants in the inquiry on
two levels, firstly as a woman from a BME community and secondly being given a
voice in this inquiry. I recognise the need for these principles where social justice is
based on giving individuals fair and equal treatment (Butts & Rich 2005). Social
equity and equality are interchangeable terms with similar meanings, but social
equity as a concept generally reflects fairness and justness based around moral
values according to McSherry (2013). I believe that being democratic is associated
with freedom for all and a belief in a system that upholds freedom in terms of
speech, human rights, and equality. The Human Rights Act 1998 sets out
fundamental rights and freedoms for UK individuals. I feel core principles such as
dignity, fairness, equality; respect and autonomy protect individuals in controlling
their own lives and are enshrined in the PAR approach due to its collaborative
process between the researcher and the participants.
Providing the participants with space, time and a voice assisted them in giving
meaning to living with Type 2 Diabetes. This enabled integration of the theories in
this inquiry. Social constructionism helped them to make sense of their experiences
of living with a long-term condition through their storytelling and collaborative
interactions with each other and the researcher. Critical theorist Habermas (1972;
1984) encouraged those excluded to have a voice. In this context it is the Guyanese
women as they talk about their experiences of living with Type 2 Diabetes. Montero
(2000) emphasised the changes that can emerge when individuals view the world. A
group action project to produce a recipe book provided the initial focus but other
unintended outcomes arose as the women adopted a healthier mode of eating and
made significant lifestyle changes in keeping with the Koch and Kralik’s (2006)
participatory nature of PAR. The spoken word and the ongoing support offered to
each other are significant as the women continue to work through cycles of action
and reflection.
Conclusion
In this chapter I have provided a rationale for selecting Koch and Kralik’s PAR
methodology. Storytelling is appropriate as it will enable me to listen to Guyanese
women’s voices. I suspect that their lives have been interrupted by diabetes and
together we can work collaboratively through cycles of reflection and action leading
to reform. I share the Koch and Kralik’s (2006) participatory worldview for
71
emancipation and collaboration and have taken on board the democratic principles
of social justice, social equity, freedom of speech and human rights. I have always
had an interest in community participation and involvement since I became a mental
health nurse and later a nurse educator; therefore working collaboratively with
individuals to meet their identified needs and to achieve their goals is not entirely
new to me. The philosophy underpinning PAR is discussed which includes the
contribution made by Heron and Reason 2007; Montero 2000; Koch and Kralik
2006; Habermas 1972; 1984, and Berger and Luckmann’s 1991 theory of social
construction in the development of knowledge in PAR. Evaluation in this type of cooperative inquiry provides a rigorous criterion by which it can be considered as
trustworthy/believable.
In the next chapter, a full description of the PAR process will be presented: the
research setting, gaining ethics approval, ethical and methodological
considerations, how participants were recruited to the inquiry, data generation and
analysis plus the phases of the inquiry. I will be following the cyclical processes of
‘looking, thinking and acting’ as a systematic cyclical action process. The looking
process starts with either the individual or group describing the context that can be a
story, a situation or having a voice. Thinking gives the individual/group time to
reflect, to make sense of what is happening and engage in a dialogue. Acting
considers options or choices available to them towards reform (Koch & Kralik 2006).
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Chapter 5
Participatory Action Research Approach
73
In the previous chapter, I identified the principles guiding this inquiry, provided a
rationale for selecting Koch and Kralik’s PAR methodology with its participatory
worldview of emancipation and collaboration plus its distinctive storytelling phase
which drives this inquiry. Co-existing with PAR methodology is my belief in
feminism, and writers such as Reinharz (1992); Franz and Stewart (1994); Olesen
(2005) and hooks (2000) have greatly influenced me in giving voice to women’s
experiences by making personal accounts political. Giving voice to the participants’
stories is a powerful way of observing which identities were reshaped as a result of
post colonialism (Childs & Williams 1996) and whether the women were able to
shed their colonial identities as they learn to live with a long-term condition.
This chapter again outlines the research question, aim and objectives, then the
research setting, recruitment process, ethical and methodological considerations. It
identifies how the data is generated and analysed using the Koch and Kralik’s PAR
approach. Two distinct phases are described separately in PAR. Phase one is
storytelling (one to one interviews), feedback and construction of a storyline. Phase
two is researching alongside participants in a group, guided by the principles of PAR
and following the cyclical processes of ‘looking, thinking, and acting’ as an iterative
process (Koch & Kralik 2006). It is important to state that this version of PAR:

Takes place in collaboration with participants

Participants determine the agenda

Participants drive the research

Participants decide on actions
I will also offer ways in which this inquiry can be considered as trustworthy and
rigorous.
Research question, aims and objectives
The research question in this inquiry is: How do Guyanese women living in the UK
learn to live with Type 2 Diabetes?
The aim of the study is to explore with Guyanese women living in the UK their
experience of living with diabetes. The objectives of the study are to:
1. give voice to the stories of Guyanese women;
2. explore their experiences living with diabetes in the context of their
Guyanese background;
3. facilitate a participatory action research group and in collaboration with
participant women explore self-care diabetes trajectories
4. consider ways ‘we’ (women and researchers) can initiate changes at an
individual level and/or within the Guyanese community living in the UK.
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Methodology
The methodology selected for this inquiry is based on Koch and Kralik’s (2006)
PAR, a democratic, collaborative and participatory research approach involving
facilitators/researchers and participants equitably. It is different to other approaches
because it is a change process based on reflection and action where the
researcher’s role is to facilitate and systematically monitor change or reforms
decided by the participants.
Time frame
The inquiry commenced in January 2010 and 18 months were spent in the field
where relationships were formed and sustained. The inquiry is due to be completed
in May 2014.
Ethical considerations
This inquiry obtained approval from the University of Surrey Ethics Committee and
was conducted within the University’s ethical framework. (See Appendix 3 for copy
of letter). This requires the researcher to recognise and respect participants’ rights
and dignity, do them no harm and to work with honesty, integrity and confidentiality.
I complied with the Ethics Committee’s requirements for data storage with no
identifying details and maintained confidentiality throughout the inquiry. The
information, records and transcripts were kept in a locked cabinet and all data
collected were password protected on the computer that only I or the supervisors
could access. Participants had access throughout the study to the recordings and
transcripts and any changes required marked as edited. On completion of the
inquiry the information will be destroyed other than tapes/discs kept for ten years in
the CRNME, the University of Surrey archives.
No identifying details of the participants were recorded and pseudonyms were used
for transcribed interviews and reporting findings. Participants were given written
information about the inquiry and completed consent and confidentiality forms prior
to commencing the interview process. (See Appendix 4.) The importance of not
sharing the content of the conversation outside of the group was emphasised at
group sessions.
The inquiry did not involve life threatening situations, emotional discomfort or
distress. Participants were informed of their right to withdraw at any point or refuse
to answer any of the questions. They were advised to seek counselling or GP
support if during the interview or the group session they felt distressed or bad
memories occurred. In the capacity of a researcher and not as a counsellor I would
refer them to the appropriate services should the need arise.
Their rights were protected as follows:

You have the right to ask questions of the researcher
75

You have the right to refuse to participate in this inquiry

You have the right to refuse to answer any question, should you chose, and
need not give any reasons for your refusal
I gave due consideration to the principle of disengagement and prepared
participants for the termination of the inquiry but the group has continued to meet
and share their experiences of living with diabetes.
Research setting
This inquiry took place within the London area because a high concentration of
Guyanese live in and around the suburbs of London. The participants fulfilled the
following inclusive criteria:

First generation Guyanese women aged between 60 to 75 years who came
to the UK aged 16 to 25 from the 1950s to 1970s

Who have had Type 2 Diabetes for at least one year

Who are interested and willing to talk about their lives in Guyana and
England

Willing to explore their experience of living with Type 2 Diabetes

Live in and around the suburbs of London
Exclusion criteria

First generation Guyanese migrant women who came later to England in the
1980s

Second generation Guyanese women
Recruitment
Eight participants were recruited from social groups, school reunions and UK
Guyanese Organisations listed on the Guyana High Commission UK website.
Guyanese women were also recruited via events. A poster (see Appendix 5.) was
also circulated amongst the Guyanese community and organisations in the London
area.
Four core members were recruited for the first part of the inquiry which is the
apprenticeship phase of the PAR approach (Koch & Kralik 2006). A further four
participants were recruited via the core group using similar networks for the second
phase. This type of recruitment is a form of snowballing that Browne (2005) asserts
is a useful technique often used in hidden populations who are difficult to access
due to low numbers or sensitivity of the topic. Information was sent the participants
by letter (see Appendix 6.) with an individual follow-up to arrange mutually
convenient times to meet at their homes.
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Eight women with an average age of 69 volunteered. The majority had been
diagnosed with Type 2 Diabetes for several years, only one had a diagnosis in the
last four years. All were retired and from middle class backgrounds. They lived in
and around London. One to one storytelling interviews were facilitated in their
homes, with the PAR groups hosted on a rotational basis in each participant’s
house and in my house.
Perceived benefits of researching with participants
The PAR process involves sharing, listening and reconstructing stories, working
collaboratively towards being heard and having a voice for the first time (Koch &
Kralik 2006). A key aim of this inquiry was personal development for the researcher
and the participants leading to reform or action.
The process provides participants with the means to take systematic action to
resolve problems they have identified, build on their strengths, set the discussion
agenda, prioritise issues pertinent to the group’s needs and decide on the actions.
Sharing a story in a safe, comfortable environment tends to empower and bond
people and storytelling is often therapeutic (Frank 1997).
Data generation Phase 1 – Storytelling
As previously mentioned in this chapter my adaptation of Koch and Kralik’s (2006)
methodology consisted of two distinct phases: phase one is storytelling and phase
two is researching alongside participants in a group. Another form of data emerged
from the reflective journal, discussion with my supervisors and my learning as I
developed self-awareness and confidence in using the PAR approach.
Preparation for the interviews
Storytelling allowed me to invite participants to talk about their experiences and to
take ownership of their own stories. The biographical work or storytelling celebrates
a particular mode of self-expression and individualised versions of experience.
According to Koch and Kralik (2006), telling one’s story is helpful for reflection,
prompting further self-understanding and often initiates improved self-management.
The interview process was planned so that the participants and I felt organised and
at ease. Pre-interview phone contact was made to establish a meaningful dialogue.
On the day, the participant was contacted to confirm the interview; I ensured that
the recording device worked correctly, and I was prepared and punctual for each
interview.
I commenced one to one interviews with eight women who consented to participate
in the inquiry. At the beginning of the interviews I introduced myself and followed the
ethical procedures by ensuring the consent form was signed, (Appendix 7.) and
reminded the participants of their rights that they could withdraw from the study at
any time.
77
As interviews progressed I learned to ask fewer questions. For my first interview,
which was supervised, I reflected and shared my views with Professor Tina Koch
who was present during the PAR apprenticeship phase. I learnt to ask the first
question as: ‘Tell me your story about when you were first diagnosed with diabetes’.
I found that the women would open up and tell me their story so the standby
prompts were rarely used. (See Appendix 8. for standby prompts)
Listening to the stories allowed me to understand the changes the participants had
to make in their daily lives (Frank 1997). I was particularly interested in the
storytelling phase of Koch and Kralik’s (2006) approach that consisted of look (look
coded in red), what is being reflected on (think coded in orange) and what action is
proposed (act coded in green). I considered look, think and act important to
understand the way people self-manage their diabetes.
Transcribing the digitally recorded interviews verbatim took at least ten hours for
every recording but gave enhanced familiarity with the data. To get an overview of
what was being said I listened to the entire recording. Then I transcribed all the
information even if what was said was not always coherent. The transcripts were
then word processed and notes made for the participant clarification and feedback. I
was aware the women used terms and place names that only a Guyanese
researcher would recognise for example ‘cassava’ or ‘plantain’ and there were
specific places in Guyana that they named that only someone familiar with the
country or culture would recognise so a glossary of these words, foods and terms is
provided (see pages 8, 9.). Interviews ranged from one to two hours. An explanation
of how long and short stories were developed following Koch and Kralik’s protocol is
in the following section.
The women were asked to read through their stories to comment on them as an
accurate interpretation. My transcribing improved as the inquiry progressed but for
the first interviews I made a number of changes to information that appeared to be
incoherent.
I realised that I might be asked for health or lifestyle advice but decided that it would
be best not to offer advice; rather I sought a diabetes specialist nurse who could
answer their questions as a group. Notes were taken about advice requested or
questions asked, and with the participant’s permission, I offered to seek answers for
them.
I became fully engaged with Koch and Kralik’s (2006) storytelling as a vehicle for
human encounter and communication. Frank describes what storytelling about
illness means to an individual: “Telling stories of illness is the attempt, instigated by
the body’s disease, to give voice to an experience that medicine cannot describe.
This voice is embodied in a specific person but it is equally social, taking its speech
from the postmodern times we live in” (Frank 1997:18).
During the interviews I was able to listen to the women’s stories, maintain eye
contact and show a keen interest in what was said. By recognising the need not to
judge or to offer any sort of advice, trusting relationships developed that fostered an
environment in which they could talk freely about their condition. Prompts were only
78
offered after long periods of silence or to explore an issue further. I appreciated the
need to feel listened to and have the time and space to talk. Listening to their stories
allowed me to follow the participants’ daily lives and understand the major changes
they had had to make. Maintaining frequent contact with the participants over a
period of 18 months by phone and home visits also afforded me the opportunity to
examine how they dealt with the daily issues of growing older in the UK.
Journal as data
Reflection in PAR is crucial for both the researcher and the participants as they
rethink their position, discover new ways of being, acting and doing, and deal with
the issues that they face. It is through critical dialogue within group sessions that
they agree, disagree, argue and debate the experience of new ways of thinking,
acting and behaving.
For the researcher keeping a journal is important as it represents reflexivity, aids
reflection and encourages the researcher to think about her reactions to the
participants and record feelings (Waterman 2013). I kept a research journal
throughout the period of the inquiry. These journal data constitute what was going
on whilst researching as I developed self-awareness. Therefore a record of the
content and the interactions that have taken place including reactions to various
events exists, and credibility is enhanced in this process (Koch 1993).
Schon’s (1983) model of reflection underpinned how I reflected during the inquiry.
Schon (1983) focuses on reflection-in-action, reflecting while doing, thinking at the
same time about feelings, testing out new ideas by drawing on previous knowledge
and understanding. Reflection-on-action occurs after the event which encourages
some form of response leading to action following reflection-in-action. When I
reflected on the interview questions, I noticed that direct and indirect questions were
asked. I recognised that open questions starting with ‘what’ or ‘how’ gave long
expansive answers, so used phrases like ‘tell me’ or ‘side effects’ to focus
responses. I tried to avoid closed questions or seek factual information as I realised
better quality data were received when the participant opened up. As interviews
progressed my skills improved and I made notes in my reflective journal charting
how I could further improve. When reviewing the transcripts again I believe the
women felt safe to tell me not only their stories of living with diabetes but about life
in Guyana, personal relationships and their experiences of migrating to the UK.
My field notes and my research journal were analysed concurrently. ‘Look, think and
act’ was used as the interpretative framework to guide analysis (Koch 2006). Look,
think and act also shaped the concurrent analysis in the researcher’s reflective
journal. Further journal accounts will be woven into subsequent chapters.
Data Analysis Phase 1: Developing the story line
The story in Phase 1 was transcribed verbatim as told by the participant and data
were analysed using Koch and Kralik’s ‘look, think and act’ framework. The entire
transcript was read through several times to get an overview and gain familiarity
79
with the narrator’s tone as this gave context and meaning to what was being said. I
noted the choices participants made, the chronology (or not), what was included
and that which could have been excluded.
In summation, the process of PAR is generally thought of as spirals of self-reflective
cycles (Koch & Kralik 2006). In this, the researcher asks ‘what is happening in this
story, what has the participant chosen to talk about and what is important here?’
The story is analysed concurrently and observations provided to participants as
feedback. These steps are rarely linear so the researcher invites participants to
reflect on the feedback and continue the story in subsequent sessions as the
‘thinking’ phase. By focusing on their lives participants make their experiences
accessible for reflection, discussion and reconstruction. The learning process can
be observed in what people do, how they interact, what they mean and value and
the language used. As the story continues, participants may or may not decide on
actions to take. The researcher monitors actions created as the action phase of the
cycle. The story telling continues ‘in cycles’ until the researcher and the researched
are satisfied with the ‘end’ product. The outcomes can offer personal growth and
development for both the researcher and the participants (Koch & Kralik 2006).
I realised that the storytelling rarely followed a neat sequence of events. An episode
of 60-120 recorded minutes creates about 20 pages of single spaced text, and the
first draft varies between 1500-3000 words. One transcript was 7500 words but the
long story came to 2250 words and its short version just 600 words.
I followed Koch and Kralik’s (2006) guidance in analysing the data which is based
on two levels of clustering. For the first level of clustering, I closely read the
transcripts and used word-processing ‘cut and paste’ to sequence events or time
lines. Aspects of identity, relationships, social context, events, opinions, feelings,
experiences, similar content and similar phrases were clustered under temporary
headings. I paid attention to the significance of repetition, clustering when the
participant had repeated certain events, people/relationships, or particular words or
phrases, perhaps this emphasised particular importance. Maybe the participant was
beginning to find her voice and the novelty of being heard instigated a revelation
worth repeating. I paid attention to word selection, particularly the verbs which relate
to ‘looking, thinking and acting’. When clustering I noted what was important to the
participant, her strengths in the emerging storyline and the storytelling tense (Koch
& Kralik 2006).
At the second level of clustering, text was coloured into look, think and act colour
codes. I then clustered this around strengths, self-identity, relationships, social
context, events, opinions, perspectives, feelings, experiences, similar content and
phrases, deleted repetitions, noted images and metaphors. I grouped these into
paragraphs and condensed text. I asked: what is the most significant thing
happening in each paragraph? In this way, I determined significant statements. I
then rewrote the paragraphs with the most significant statement at the helm. Using
a significant statement as the first sentence of the paragraph, I then reordered the
paragraphs into a storyline. This storyline was further condensed by gathering the
first lines of each paragraph (significant statements) and joining them together to
80
make a short story version. Depending on the situation, I could then select whether
to return the long or short version of the story to the participant. I selected to give
the longer story line. (See Appendix 9. for an example of the analysis of a story)
Commonalities or constructs
The interview, analysis process and storyline writing were repeated for each
transcript in Phase 1 from which I compiled a list of significant statements from each
story. I then wrote up the commonalities based on these significant statements in
my own words as ‘findings’ (See Appendix 10.).
Co-construction of story / feed back
The developing storyline was given to the participants for co-construction and
feedback as a central part of maintaining their involvement in the PAR collaborative
process making the final story a co-construction between the facilitator/researcher
and the participant. As additional information emerged from the group sessions
individual storytelling continued until the participant was satisfied with their story.
Constant validation of the story enhanced methodological rigour (Koch & Kralik
2006).
Data generation Phase 2 - Group sessions
In phase two, the data were digitally recorded and transcribed with feedback given
to participants prior to each session as a summary of the previous meeting.
Inviting participants to join a group
After I had completed the one to one interviews I invited all participants to join a
PAR group discussion. More details of the participants are given on page 92 –
Table 2. Two women, Shirley and Jane declined to participate in the larger PAR
group so I researched alongside a group of six rather than eight. Shirley is involved
in a range of activities linked with her local church and Jane attended a local
neighbourhood forum and other local committees. Contact was maintained outside
of the group sessions with Shirley during the earlier part of the inquiry and with Jane
during the life of the groups. There were 14 group sessions over a period of 18
months.
The Setting
The women agreed to host the sessions in their homes rather than meeting in a
more formal setting like a community hall or centre. They communicated that their
individual homes would be more relaxed, warm and inviting with facilities to make
tea or coffee and we agreed that the host of the session would provide lunch. The
PAR group sessions therefore rotated to each of the participants’ homes including
the researcher’s home. In preparation I ensured that the environment was
appropriate and that I was familiar with any equipment being used.
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Food and refreshments offered at the PAR groups
Initially lunch and beverages prepared by the host were available for the duration of
the sessions. The meals were a rather elaborate affair with a huge variety of dishes
mainly from Guyana that were consumed by all. At later group sessions, each of the
women contributed one dish to the event therefore it became a shared experience.
This introduced more variety and the recognition that they should only be
consuming specific quantities of food, part of their learning was to eat smaller and
healthier portions.
Setting the agenda
Prior to us setting the agenda for the PAR group a number of issues were
considered. We discussed at the first group session if the women would like to set
an agenda. In addition, two further questions were raised at this meeting. This
included their views regarding this group and how they would like to take this
forward? These were very broad questions but ones that required consideration of
their expectations of the group.
The structure of these sessions is based on the Koch and Kralik’s (2006) model of
setting up PAR groups. The women were reminded of the aim and objectives of the
inquiry and discussed mine and their expectations. During the first phase of the
inquiry, actions that resulted from this first group were discussed with those who
later joined. It was generally accepted by the group that actions could change over a
period of time as they learned to understand each other and the way in which the
diabetes has impacted on their lives.
Following lunch, the session lasted for one to two hours. The setting of ‘norms’ or
ground rules was agreed by all members (Tuckman 1965). The rules agreed were:

To set an agenda for each session

To introduce each participant at the beginning by name. (This helped me
with voice recognition)

To avoid making any distracting noises (including mobiles) during the
session

To allow one person to speak in turn rather than all members speaking at
the same time

To ensure lunch lasted between one to two hours
This enabled all members to give their full concentration and attention to the
session. A small table was selected so each individual could be heard and feel
involved in the group. Familiarising myself with the recording equipment was
another important factor that was considered in order to avoid any hiccups occurring
during the session (Bloor & Wood 2006). The digital tape recorder was placed on
the table in the centre of the group to ensure clarity. A sound check was undertaken
82
to ensure all the voices were recorded clearly and coherently. Recording then
commenced before anyone started talking in order to capture the content of the
session. Afterwards I recorded my reflections.
A day convenient for all to arrive around lunch time was chosen. I was aware that
some had not travelled for a long time so I checked they had the correct address
and travel details for the session.
Expectations congruent with principles
Group norms were collaboratively agreed by the group. These are important
because they govern behaviour in a group. Parks and Sanna (1999) suggest that
norms can be explicit and carefully recorded or implicit but acknowledged by the
group. A group without established and agreed norms would end up being chaotic
because boundaries have not been set. The norms were: the women agreed to
have a meal first and then to have the sessions afterwards for an hour. Each
woman would then have the opportunity to speak in turn. This was a democratic
process with the women determining what sort of group they wanted to have. The
purpose of the group was reiterated to share experiences and to decide on future
personal and group actions. We agreed that I would be the facilitator and reminded
each other that we should show respect for what people had to say and that
individuals should avoid speaking at the same time as the conversation could
become incoherent. The women claimed that they understood the ethical
considerations and confidentiality issues that might arise. The ground rules were
discussed again when more members were added to the group.
Researcher as a facilitator
A key to facilitating PAR groups is to be genuine and authentic (Stringer 1999; Koch
& Kralik 2006). The researcher is expected to give of herself when facilitating the
group and use the participants’ own words. The aim is to seek clarification and
respond through reflection enabling participants to consider several courses of
action. My listening, seeing and writing skills as a facilitator researcher developed
as a consequence. Constructions of experience are dynamic and new
understandings emerge as we make sense of our complex social world (Montero
2000). The looking phase means the group observes the setting or the situation and
gathers information about each other.
The researcher / facilitator role
The facilitator in the PAR process has a key role to play in enabling the women to
take control of the group and to only intervene if the women are digressing or
deviating from the research topic. The aim was to maintain the focus of the group.
The other key aspects to this role as suggested by Koch (2006) were:

Act as a catalyst to bring about change

Maintain flexibility in the PAR process
83

Negotiate with the group about the role of the facilitator

Be an inquirer, a clarifier and a space maker

Stimulate people to change by addressing issues that concern them now

Use participants own words to record and listen

Seek clarification and check what has been said

Respond through reflection

Help the participants to analyse their situation

Enable people to consider several courses of action

Consider the possible consequences and results of each action

Assist in implementing the plan by raising issues and possible weaknesses
in what was being suggested
The facilitator acts to assist participants to articulate the looking phase and to think/
reflect in line with the following criteria:

Maintain the focus of the group

Stimulate change by addressing issues that concern them (Koch & Kralik
2006; Stringer 2007)
I was also guided by Stringer’s (1999) guidelines on the role of the facilitator. A
researcher, within the traditional paradigms, is an ‘expert’ doing research, whereas
PAR has evolved to a point where the researcher is a ‘resource’ person and
referred to as a facilitator. The PAR facilitator acts to assist participants to view their
strengths, define concerns clearly, and support them in finding solutions. Guided by
Stringer (1999), the facilitator can achieve this with the following guidelines:

Stimulate, rather than impose change. Encourage participants to change
through addressing issues that concern them now;

Focus on the way things are done, rather than in the traditional method of
focusing on results achieved;

Ensure that the process starts where people are, rather than where
someone else thinks they are, or where someone thinks they ought to be;

Assist participants to analyse their present situation, consider what they find
and then plan for which parts they would like to keep and what they would
like to change.
It is not the role of the facilitator to tell the participants what they should change or
keep, but rather to respect and acknowledge their ideas (Stringer 1999). It is
enabling the participants to view several options and the potential outcomes or
84
consequences. When the participants have selected an option, it is the facilitator's
role to assist implementation by identifying the pros and cons and helping to locate
the necessary resources. It is recognised that the ultimate responsibility for the
success of the process centres on the participants’ feeling of ‘ownership’ and
motivation for investing time and energy in changing the status quo.
Whilst the storytelling phase was new to me I am an experienced facilitator. I have
also identified that it is important to be flexible with the research process. Working in
this collaborative way assisted me in building relationships with the participants to
make changes in their lives. I believe that I can demonstrate proficient management
of intensive data generation and analysis, in-depth interviews and group
participation.
I used PAR engagement strategies to foster on-going involvement by keeping in
regular contact. One member declined telephone contact after three calls but asked
for her interview to be included in the research. At PAR group sessions participants
did not always want the session recorded for the entire period, for instance when
sharing food. As co-researchers, I respected their right to decide what they wanted
and only recorded data when they were in agreement. I observed their strengths
rather than their problems or issues and facilitated the movement of the group
towards achievement and action on a personal and group level.
I was comfortable with the uncertainty inherent in the process as I was never sure
who would attend. The women were given reminders but not all of them attended
every session. Consequently I contacted them to find out their reasons for not
attending and was prepared for the unexpected, managing each situation as it
arose.
Group dynamics and power relations
In reviewing the literature on group dynamics and power relations, research groups
are different to social groups where people congregate, exchange views and ideas
and possibly have a shared or common goal. To form a group, there has to be a
certain degree of connection which is meaningful to the individuals. Normally there
is a shared purpose or goal that turns a mere aggregate of individuals into a bona
fide group (Forsyth 2010).
Research groups bring individuals together for a specific purpose such as health
care focus groups with participants who are expected to answer a specific question.
In this type of group the facilitator makes a concerted effort to keep the participants
on track that leads the group towards answering the set question. Hansen (2006)
describes how focus groups have been used successfully in health related research
by creating a safe environment for sharing experiences within a group setting.
PAR groups are uniquely different because they are exploratory and participants
decide on the topic/experiences to be discussed over many sessions. Koch and
Kralik (2006) suggest that when a PAR group meets the first session is exploratory;
people are invited to talk about their experiences. PAR group participants take the
lead and set the agenda of what will be discussed. Facilitation is important so
85
participants do not continue talking about the same things or covering the same
ground. The facilitator encourages them to build on their strengths and consider the
action leading to reform which requires time for them to achieve a group action
decision.
Group dynamics are the actions, processes and changes in social groups
(Donelson 2010). For this inquiry group dynamics and power relations were
important because they contributed to my understanding of what dynamics were
taking place within the 14 PAR group sessions over an 18 month period.
Participants had come together bringing their fears, insecurities, experiences and
knowledge but being unaware that they may have identical issues that they face in
their daily lives when living with Type 2 Diabetes. Several theories have contributed
to my understanding of how group dynamics operate within this PAR group setting.
(Lewin 1946; 1947) and Tuckman (1965; 1972; 1996; 2003), both agree that groups
go through a series of phases or stages if they persist for lengthy periods. Lewin
(1946) considered group dynamics and action research arguing that people may
come to a group with different dispositions but if they share a common goal they are
more likely to act together to achieve it. Lewin’s approach described powerful forces
that occur in groups and emphasised that the power relationship between the
researcher and those researched should not be ignored.
Tuckman’s (1965) classical group dynamic model initially identified four stages of
group development but following subsequent reiteration of his model, he added an
adjourning stage in 1975. Tuckman’s model gives a good explanation of how groups
develop and make decisions through these various stages as relationships become
firmly established over a period of time. The five stages of this model are forming,
storming, norming, performing and adjourning.

Forming – reliance on the leader for guidance and direction

Storming – team members vie for position in the group, power struggles and
conflicts exist and compromises are required

Norming – consensus is reached, decisions are made, facilitator plays a key
role as team becomes committed, unified and settled

Performing – team has a shared vision, disagreements occur but members
are able to resolve them. Leader delegates more but members may ask for
support

Adjourning – break up of group as the task is completed and purpose is
fulfilled. Sense of insecurity may occur as change takes place within the
group
(Tuckman 1975)
Groups do not always go through Tuckman’s five stages in a linear fashion. They
move in and out of the stages over time. These behaviour observations are
considered in Chapter 7. It is important to recognise who holds the power and
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control within a group according to Arnstein (1969) where one member can
dominate proceedings and exert influence over others even if they try to resist. A
distinction should be made between citizen power, engagement and tokenism in a
group situation (Arnstein 1969).
The Hawthorne effect too can occur when individuals in a group setting know that
they are being observed as a group and so may behave differently. Forsyth (2006)
cites the work of Mayo who developed this concept from productivity research
conducted at the Hawthorne Plant of Western Electric Company. The researchers
concluded that the participants worked harder because they were being observed.
In my PAR inquiry, the researcher and the participants are equal members of the
group however changes in behaviour may be attributed to the Hawthorne effect
created by my presence as facilitator. But stimulating action is precisely what this
PAR inquiry sets out to achieve. These behaviour observations will need to be given
consideration and will be discussed in Chapter 7.
Data Analysis Phase 2: PAR group process
At the first session the women were encouraged to contribute their thoughts
regarding the group norms presented earlier. As the facilitator, I felt it was important
to promote positive feelings and a sense of equality and collaborative relationship in
order to maintain harmony and avoid conflict, whilst providing strategies to manage
any conflict that arose (Koch & Kralik 2006).
Each group member was asked to state their name and respond to group questions
to make it collaborative. I asked them to identify what they wanted from this group,
whether they would like to set an agenda, had any particular views regarding the
group and where they would like to take the group.
Each participant was given the opportunity to talk about their experiences of living
with Type 2 Diabetes and to use this forum to discuss their common strengths in
managing as well as living with the condition. Rather than provide each participant
with a copy of each other’s story, they mutually agreed to verbally share their stories
at this session as they consider this would be good way to introduce themselves to
each other.
During this session, I needed to demonstrate my facilitative rather than control skills.
I was relaxed and at ease with the process, reminded them of the purpose of the
session, gave an overview of the inquiry and responded to any questions asked. I
displayed sensitivity and created a context rich in interpersonal interaction so
participants could engage and reflect on their stories (Schon 1983). The focus of the
first session changed as they explored other issues important to them. Written
feedback was shared with the group members after each session. I became aware
that each group session raised different issues so that actions were revealed only
through careful observation. Completed actions were agreed by the group leading to
reform/action.
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The PAR groups were analysed using Koch and Kralik’s (2006) analysis framework
as previously mentioned in the earlier section of this chapter. The Guyanese women
make sense of their world via the construction of their experiences of living with
Type 2 Diabetes by accepting that they will come to the inquiry with their own
knowledge(s) as highlighted by Berger and Luckmann (1991) in Chapter 4. I
enhanced their experiences of living with chronic illness through their story telling,
reflection and collaborative interactions with each other and the researcher.
Feedback cycles
I recorded each session. When each PAR group discussion was over, I transcribed
the entire conversation and then summarised the issues and personal/group
appropriate actions that the women wanted to take forward. This summary sheet
was then mailed out to the women so they had a record of what was discussed.
This was followed up with a telephone call to each woman to clarify if they wished to
add anything further or to flag up any other personal issues that concerned them. A
further copy of the summary sheet of the previous session was handed out at each
subsequent group session so that the women were kept informed of all the
proceedings. For example, the women contacted me if they had received
information regarding their diabetes, new medication that they had read about in the
Balance magazine for individuals with diabetes, specific diets, television
programmes on diabetes and checklists identifying the type of services they should
receive. They also telephoned me to clarify an action that they had agreed to take or
to share something important that had taken place in their lives. Reflective notes
were taken after each session.
Stories and analyses occurred concurrently, which enabled identification of
emerging understanding from early data to guide the subsequent group discussion.
Feedback to the participants was ongoing. In short, thinking refers to exploring,
analysing, interpreting and explaining events, storylines and interpretations. I noted
the group’s explanations as it was thinking and followed the analysis protocol. In
terms of rigour, critical evaluation of the data generation process (or storyline), the
main conversations from the previous group sessions were presented and
confirmed at each gathering or conversation.
Rigour and evaluation in PAR research
During the PAR process, researchers record and analyse their reflections and these
constitute a data source as discussed previously. A brief overview of rigour and
evaluation is given in Chapter 4 however, in this section a more in depth account is
discussed.
In this inquiry, the PAR process is the same as the process evaluation with a focus
on what happens whilst researching. Providing feedback before the next session is
crucial for engaging with PAR and necessary for on-going evaluation. Participants
must take ownership of their story so they are asked to check that it is theirs and
revisions made as they suggested. The storyline is then given to the participant for
further co-construction with feedback offered on the strengths observed in the story-
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line to enhance methodological rigour. The final story becomes a co-construction
between the facilitator/researcher and the participant (Koch & Kralik 2006).
Potentially the questions and prompts devised could lead the interviews; however
my facilitation style was to step back. The participants influenced the research
process and highlighted their personal experiences without being asked. They had
found someone willing to listen to them. There were instances when we engaged in
very deep, meaningful dialogue and I was uncertain how to proceed. Fortunately
my supervisor was present at two of the apprenticeship phase interviews which
meant I could observe and learn how an experienced researcher proceeds in such
complex situations. For example, with one participant I was uncertain how to bring
in her life experiences in Guyana, until my supervisor showed me the type of
questions which encouraged the participant to expand on what she was saying.
A story can change, as new information is shared in subsequent interviews and data
reconsidered from the group interaction. Noting the women’s strengths as I saw
them and using this data to reinforce the inquiry’s process was part of the
evaluation. How I shaped the story as a result of the questions being asked needed
to be considered to check whose voice was being heard in the story, was it mine,
the participants’ or both?
Process or formative evaluation refers to the provision of short loop diagnostic
feedback about the quality and implementation of, immediate responses to, and
activities generated by, action research (Dick 1999). PAR groups shape process
evaluation as feedback cycles concurrent to the research. Cycles of PAR with
concurrent feedback means that data generated is immediately validated. In PAR
groups, short loop feedback will ensure that problems and issues identified during
the research process are communicated quickly so that the refinements and
improvements can be planned and implemented. Systematic recording and analysis
of actions, feedback and responses provide process evaluation data. PAR and
process evaluation share evaluation criteria.
During the PAR process I examined what happened whilst researching, using my
recorded reflections as a data source for analysis. The level of transparency
achieved will determine whether the reader can follow the decisions which were
made by the researcher during the process. I suggest that, based on reported
reflections, the reader will decide if they trust the research process.
The aim of collaborative inquiry is to construct meaningful practical knowledge from
the experiences of the participants. The group process enriches insights into the
experiences of others, from which the group engages in making meaning of these
experiences (Donelson 2010). Collaborative, reflective discussions are helpful in
generating deeper insights and understandings.
Rigour in PAR is evaluated by the willingness of participants to act (Dick 1999;
Koch & Kralik 2006). Successful evaluation criteria are demonstrated when
participants express a strong sense of self development and evolution in their
practices (lives), when they demonstrate an increased understanding of their
situation, and the group initiates action towards reform. The core validity claim is
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focused on the workability of the actual social change activity. I am interested in the
participants’ practical accomplishment in making sense of their lives and its relation
to social action.
Conclusion
In this chapter I have given a full description of the PAR process that includes the
research setting, gaining ethics approval, how participants were recruited, data
generation, analysis and reflection. This inquiry has two distinct phases of
storytelling interviews and PAR group sessions. Storytelling and group sessions
embrace a collaborative and democratic approach to research that involves the
facilitators/researchers and the participants in the research process. It recognises
the unique strength that each individual brings to the inquiry. The aim is to enable
Guyanese women’s voices to be heard when telling their stories about living with
Type 2 Diabetes. I have demonstrated how rigour was maintained throughout the
process for the outcomes of this inquiry to have credibility and transparency under
scrutiny.
In the next chapter, I examine the storytelling phase of the inquiry by privileging the
participants’ eight stories shared with me including my post-interview reflections.
From these, I outline the constructs that emerge for critical exploration in Chapter 8.
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Chapter 6
One to One Interviews and Storytelling
91
In the previous chapter I discussed the PAR process and reiterated my rationale for
the selection of this approach to answer the research question: How do Guyanese
women living in the UK learn to live with Type 2 Diabetes? I discuss my role as a
researcher and facilitator as I embrace the collaborative and democratic approach
to PAR. The way that the interviews were conducted and the importance of
individual and group relationship building are discussed in depth.
The aim of this chapter is to listen to the voices of the women as individuals and for
their stories to be heard in their own voice. My inquiry was guided by the PAR
methodology that consists of two distinct phases (Koch & Kralik 2006). Phase one is
storytelling (one to one interviews), feedback, and construction of a long story,
finding commonalities and constructs which will be covered in this chapter. This
storytelling phase took place while I was in the field for 18 months. In terms of
rigour, the women’s voices are incorporated into the text with a claim that a multi
voiced text is believable. Stories will be presented in their entirety and I do not
privilege certain aspects over others. Reflections are incorporated into the text
making the research process transparent. Phase two is the PAR group discussion
which was researching alongside participants in a group. The PAR group process
will be discussed in Chapter 7.
Introducing the women
Eight women volunteered to take part in the study and were given fictional names:
to preserve confidentiality: Vera, Marjorie, Pam, Bea, Jane, Shirley, Agnes and
Jillian. Each will be introduced before sharing their story. These retired women are
aged from mid-sixties to mid-seventies and the majority have lived an active life in
the London suburbs for many years. The average age of the women is 69. Most
were in a higher socio-economic class when they lived in Guyana.
The women in the inquiry classified themselves as middle class because of their
previous lifestyles in Guyana which were framed around large houses with servants
and families who engaged in career jobs in business, politics and ambassadorial
positions. For many of them their circumstances changed when they migrated to
England, but the women still perceived their status as middle class. However some
of their positions could have been perceived as being the lower social strata of the
UK based on their cited occupations. The Registrar General Social Class (2001) six
fold model assigned individuals to a particular occupational group and placed
workers at various levels in this model with professionals at the top and unskilled
manual workers at the bottom. Savage et al. (2013) developed a newer seven
staged model based on the Great British Class Survey. They devised a way of
measuring class by the different types of capital that people possess. Savage et al.
(2013) based this measurement of class on the work of Bourdieu’s (1984) three
types of capital: economic (wealth and income), cultural (ability to engage with
leisure, music and so on) and social (contacts and connections which people draw
on). In their analysis of class and stratification, Savage et al. (2013) position middle
class as having a high level of capital. The women in this inquiry did not ascribe to
either of these measurements of class. Instead they used self-identification as a
subjective definition of middle class.
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In fact they are unlike other BME Groups living in London (Nandi & Platt 2010). Four
were of mixed parentage, two African, one Chinese and one Indian. These women
were also well educated and two had held substantial positions in the workforce.
Only one person was still married, three widowed, two were divorced and two never
married. The most interesting observation in Table 2 is the dates they were
diagnosed. Only two women were diagnosed recently whereas the others were
diagnosed many years ago, Vera being the longest. With one exception they have
all lived with Type 2 Diabetes for several years. Given the length of time postdiagnosis, we could expect their diabetes self-management to be well orchestrated.
We will listen to their stories about living with diabetes in the section to follow.
Table 2: Eight Guyanese participants (names are fictional)
Participants/
Race
Age
Class
Education
level
Years
in
UK
Marital
status
Diagnosis
Work preretirement
Vera – Mixed
69
middle
tertiary
48
Single
1983
Manager
Marjorie Mixed
64
middle
tertiary
48
Divorced
1999
Middle
Manager
Pam - Mixed
72
middle
tertiary
45
Single
2006
Personnel
Assistant
Bea - Indian
74
middle
tertiary
50
Married
1990
Midwife
Jane - Chinese
71
middle
tertiary
39
Widow
2001
Department
Store
Shirley African
70
middle
undergraduate
47
Divorced
1998
Head of
Dep
Education
Agnes - African
66
middle
tertiary
35
Widow
2008
Supervisor
Jillian -Mixed
71
middle
tertiary
48
Widow
2002
Personnel
Assistant
Preparation
Planning the one-to-one personal storytelling interviews was an important step in
preparation for the process during the apprenticeship phase when I was being
supervised. As previously mentioned in Chapter 5, supervision in PAR is crucial for
the novice researcher as she begins to learn the knowledge and skills whilst being
mentored by the supervisor (Koch & Kralik 2006). Low (2013) gave me some tips
when preparing for interviews that included allowing sufficient time to recruit
participants, schedule interviews and allow for re interviewing as necessary. Stories
told are often on-going so I allocated time to revisit.
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Rowley (2012) highlighted the importance of good organisational skills which I
considered as I planned my journey carefully to London where the interviews took
place. (See Appendix 7)
One to one interviews
One of my PhD supervisors accompanied me on two occasions: being mentored
whilst interviewing was considered to be the PAR apprenticeship phase. My first
storytelling interview took place with Vera in 2010. I reflected and shared my views
with the supervisor to obtain feedback on my performance as I observed how she
listened intently, making her presence felt without saying anything, except to clarify.
It was Vera’s voice we wanted to hear. The first question was non-directive and
open: “Tell me your story about living with diabetes”. “Perhaps you can start when
you were first diagnosed”. I found that Vera opened up and told her story almost
entirely without prompts. When Vera was talking about Guyanese food, I was able
to explain some of the traditional recipes to my supervisor. I learned it was important
to relax, allow the women to take control and tell the story in whichever way they
wished.
Building relationships with the women
I contacted the women by telephone beforehand and believe this conversation
helped with building a relationship. By the time I visited them for the interview we
had already engaged in a dialogue. The exchange of information occurred easily as
I recognised that we had come from a similar background and culture. This made it
easier as we shared stories about living in Guyana. There was an immediate
connection. The majority of the women then spoke freely about their lives in the UK
including their long-term condition. On some occasions, two of the women, Jane
and Shirley were hesitant to talk and I had to ask more questions. For instance,
Jane was reluctant to talk about her diabetes in any detail or her previous home life
in Guyana so I used prompts to encourage her to talk. For majority of the group,
they spoke frankly and openly. When talking about the way in which they managed
their diabetes, I nodded remembering to reinforce positively the actions they were
taking. I realised from the outset to say little in order to learn a great deal from them.
Moreover I was careful not to judge or give advice or try to take on a counselling
role. As trust developed, the women divulged their rather personal stories and facts.
The interviews were expected to take an hour but on occasions they continued until
they could be appropriately stopped and stories told.
Although I subscribe to the principle of reciprocity, when health related questions
were put to me that demanded an answer, I reminded them that I was there in a
capacity as a facilitator/researcher and not as a nurse. However I was aware that if
a matter of concern was raised regarding their diabetes then I suggested that they
made an appointment to see their GPs. Meanwhile I noted the questions as I
planned to have access to a diabetic specialist nurse who might be able to join the
PAR groups if requested by the women. I allowed, too, for silence so that we could
recollect our thoughts before we moved the interview on. I was conscious
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throughout the interview to provide a relaxed, safe space for the women to tell their
stories where there was trust and understanding.
I kept in frequent contact with the participants for the duration of the inquiry. I made
further home visits, telephone calls and we held telephone conferences. These
further forms of communication helped to cement the relationships. Six out of the
eight women consented later to join the PAR group which lasted over an 18 month
period.
Storytelling: Data generation, analysis and reflections
This section provides data extracts to illustrate how the data from the interviews
were generated and analysed. The data will be analysed using Koch and Kralik’s
(2006) ‘look, think and act’ analysis framework.
Each story as told by the participant was transcribed verbatim. I read each transcript
several times to gain further familiarity of the narrator’s voice. I noted the choices
the participants made in telling this story, its chronology (or not), what the participant
decided to include in their story and I pondered about what could have been
excluded. The specific steps taken to analyse the stories told are discussed in detail
in Chapter 5.
The main objective was to listen to the voices of the women. In this Chapter their
voices will be heard. Often 10,000 words were reduced to 2500 words – see Vera’s
account below but the development of the storyline was developed collaboratively.
In the section below I have privileged eight storylines.
Vera’s storyline
I had been experiencing symptoms for about 18 months and I had been seeing my
GP and three Harley street specialists for over a year with various symptoms, but no
one did a test. I was literally on the floor, sleeping during lunch breaks in order to
get through the afternoon’s work. I was drinking everything I could get my hands
on, including Ribena. My weight shot up and I put on half a stone. There was a spot
on my nose that was like a boil and it would not heal. I was getting all sorts of
genital itching. I saw the GP’s locum; an elderly female and she immediately
assumed that I had to have a social disease. I said ‘look lady let me tell you
something; I lead a Christian lifestyle, I have not been sleeping around’.
Eventually I was diagnosed with diabetes in September 1983. One of my staff at
work who had been diabetic for a long time said to me, you’d better go and see the
occupational nurse. The nurse did the usual urine test and said by the look of this
dark urine you could be dead. I saw my GP that same night and suddenly he was
very concerned. He was a different character; sitting up and taking notice. My sister
and I had booked to go to Spain and he said no, you’ll have to cancel because you
can’t go to Spain with untreated diabetes. Now all he needed to do really was to say
to me ‘Well look, avoid certain things, keep out of the heat, you know, drink a lot of
water’. Then I had to wait about a month before I got to St George’s and was
diagnosed with diabetes.
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I was put on a very severe diet, I could hardly eat anything but I stayed on that diet
for about a year and things improved dramatically. But then I realised the diet
wasn’t doing the trick. So of my own volition I rang St George’s and I said ‘Sorry,
but I need to come back and see you’, and that is how I stayed with them until a year
ago. My GP has now taken over.
I don’t think the medical profession gave any thought to the psychological effects of
being diagnosed, suddenly being told ‘You can’t do this and you can’t do that, you
can’t have this, you can’t have that’. It affects you in so many ways. You have to
stop and think about when you eat, how you eat and you must do all these tests. They
never pointed out the effect it could have on your eyes, gums or your feet.
There was no education as such. It was just, oh we’ve got it under control and you
go to the clinic every three months. I joined the Diabetic Association. I get the
Balance magazines. When you go to St George’s, you meet certain faces regularly
so we formed a little clique for exchanging information, who is on insulin and who
is not. One or two of the people had ‘severe’ diabetes so from speaking to them I
learned that I had to look out for certain things.
I went on insulin in 1999 at my instigation. I kept having the tablets combined with
the diet but these were not working satisfactorily; the condition was becoming more
chronic. I told them I need to go on insulin. They gave in. Again you have to be
your own doctor. I have experienced so much.
I realised that my sight was not what it ought to be. I was blaming it on computers at
work so I mentioned it to St George’s but the ophthalmic department lost my notes
by the time of the second visit. I transferred to my local hospital eye unit. All went
well. I turned up one day in 2002 and waited ages to see the medical staff. They
looked at my eyes and talked over my head ‘oh well she’s got the makings of
cataracts and she has a lot of diabetic retinopathy’. What on earth were they talking
about? Next thing I know my eyes are being lasered and weeping after lengthy
sessions. I said to my family ‘this cannot be right’. So I rang Moorfields and saw
somebody privately. When he looked at my eyes he said the state of your eyes
suggests that you could go blind at any time! Subsequently I have lost peripheral
vision because of all the lasering. That was necessary to prevent unwanted blood
vessels forming and maybe attacking the retina. I attend Moorfields regularly since
2002 and see the same consultant or one of his staff.
When I first went to St George’s if you looked around patients were an even mixture
of English people and non-English. My last visit to St George’s seemed to be
predominantly Afro-Caribbean and Asian and some Eastern Europeans? Now is
that because we are clued up and looking for symptoms or is it because there are
more people who are prone to diabetes because of their background or whatever?
I grew up in a normal family, I had a very happy childhood. My father was very
strong, well-built person, very active, academic, loved cricket, weight lifting, loved
most sport, music, mostly classical, opera was his great love. In his early 30s he
became a founder member of the Metropolitan Opera Guild of New York. Because
of his love of music, there was music always. I did sing at school and I was in the
choir until I left school. I was active; I cycled to and from school and most places. I
played games, liked table tennis up to the time I left home in my early 20s.
The diet in Guyana was quite healthy. Root vegetables, lots of greens, beef, fish, not
a great deal of pork, mostly beef and fish. We had lots of fruits. I ate plantains, there
is a green one cooked in a certain way which is very good for you. When it is fried,
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when ripe, that is when it can create dietary problems but in those days we didn’t
need to worry. Cassava I loved but because I developed sinus problems at an early
age they felt the starch wasn’t good for me. Yams, tania, that was one of my
favourites. Eddoes they used to make soup because it’s good for your blood. I
remember my brother four years younger, watched everything being done for him.
They would crush the potatoes or the eddoes, put a little milk, butter and that was in
place of all these supermarket foods. Very good diet, then there was plantain flour,
used to make porridge which is very nourishing and pablum, a sort of porridge. The
famous Cow and Gate milk which we used in place of fresh milk at home. We had
fresh milk delivered every morning by Indian farmers but we suspect it was watered
down. As we got older we used evaporated milk which is good and we did not need
to be aware of any side effects. Because we were so active, and it’s a hot climate so
you’re sweating, getting rid of a lot of impurities. You go home from school or work
and relax for a short while and then you play games or visit a friend. You cycle or
walk. Evenings are cooler, you are out again.
My mother told me that my father must have been in his late 30s when he developed
what we refer to in the Caribbean as ‘a touch of sugar’. I know two people from the
Caribbean and these are highly intelligent professional people, well I think can’t
you work this one out for yourself, if somebody told you have ‘a touch of sugar,
you’re either prone to diabetes or you’ve actually got it’. My father may have had it.
When I was diagnosed nobody in my nuclear family had diabetes. Now my cousins
two of my father’s brother’s children are diabetic. His first cousin who died recently
became diabetic in later years. Her son is diabetic and he is now in his early 70s so
it seems to have come from my father’s side of the family.
This high incidence amongst the Amerindians who have now relocated to
Georgetown and other coastal areas, as against those living in the interior, strongly
suggest their lifestyle in the interior made them less prone to diabetes. There is a big
influx now in Georgetown and they all want a Western lifestyle, food and the
Western way of living.
When I left home I weighed 92 pounds. I think I was a size 10. So you start to work,
then of course you’re leaving home early in the mornings and may or may not have
had breakfast. Come 10 o’clock, a trolley comes round, lovely crusty rolls with
cheddar cheese and a nice slab of butter and coffee. You are not moving because
you are at the desk. Lunchtime, you are making new friends, initially with a group
from the Caribbean; we met and always had a meal. Everybody went to the staff
canteen and had a meal: that was part of the culture. So then you had soup, steak
and kidney pudding, potatoes and a sweet. When you‘ve finished you go back and sit
down for the next three or four hours. You go home and its cold and you are hungry
and my aunt who lived with us cooked an evening meal. Then it’s cold and I’m too
tired to go out. Television was a novelty back in the 60s so you flop in front of it.
Now that is a change of lifestyle and before you go to bed a biscuit or nuts.
Can you see the difference in the lifestyle between here and Guyana? Particularly in
the winter months, even though I did lots of socialising, voluntary work and other
activities. From the 70s onward I would drive to these activities, sit for two to three
hours and come home tired. At week-ends I brought reports home to complete so
instead of being out on a Sunday, for leisure, I worked. Stress also played its part.
I came here, and my sister, and we are thinking we’ll stay four or five years till
things settle down in Guyana. When I came to London in 1962 I felt luckier than
many people as in a short while I was being trained in what seemed to be the first
97
wave of ‘junior overseas’ managers in a civil service department but I hit trouble.
There were people who didn’t want me there. I just thought I am going to show you
that I can do it. I kept thinking they will come after me; I don’t want them to go
through what I am going through. I should have looked after ‘number one’.
I thought I’m here for about five years waiting for the political life in Guyana to
settle but 10 and then 15 years went by. I thought ‘God, we aren’t going back, we
haven’t put down roots because you’re like a schizophrenic, half of you is adjusting
to life here and exploring new avenues and the other half is thinking, no, my family
are back there, I want to get back home’.
At work there were many problems. I went through some days when I could have
put my coat on and walked out and never looked back, but I kept at it. I didn’t get to
where I wanted in the long run. I made a reasonable success of it but it was very
difficult. At the age of 51 I was made redundant with a whole host of other people.
In the middle of sorting out our mother’s situation with the Home Office my little
niece got chickenpox and passed it on to me (aged 40). Now I read somewhere that
that virus stays in your body for a while and can trigger off a diabetic condition. I
suppose the onslaught to your immune system coupled with the stress and shock of
my father’s death, major surgery in 1982, work considerations, a whole host of
things I can put together which perhaps triggered my diabetic condition.
When I look back I think I was always prone to diabetes. From an early age I used
to get heavy-headed and my skin had hives, what we call ‘mad blood’. I get it even
now if I eat anything that is too sweet.
I come from a line of strong personalities and the women in both families have been
very independent, strong minded, determined to see things through: that was the
way my parents brought me up as well. My faith is Catholicism. It keeps me going.
You learn to deal with life, to be positive in the face of adversity.
The last ten, certainly the last four and half years have been some of the worst years
because I am now on my own. My sister developed cancer, she died in 2004. Exactly
four months later my aunt died, she had cancer as well, at age 94. Then my mother
died a year ago last February having suffered from dementia for the last 41/2 years.
I was her sole carer.
My mother was a beautiful woman, very gentle, very self-contained. She was such a
lady and when I saw what she had to endure in hospital, it broke my heart. Patients
used to tell me and I saw it once myself, I turned up there because of the dementia
they tucked the bedclothes in very tightly and she’s pulling at them and then she is
lying there totally exposed. I used to say mom, ‘this is not nice’, and she didn’t know
what was happening.
Conversely I am not happy with my diabetic control. The slow acting insulin is not
working the way it should. Last night my reading was 6.4. I am supposed to have
between 16 and 22 units so I thought no I’ll just have 15 because it’s 6.4. Then I
thought I’m on my own, the last thing I want is a ‘hypo’. I had a bit of brioche and
some hot water, nothing else. I get up this morning and the reading is nine point
something! Yesterday it was 10. I can’t explain it.
I have never been offered diabetic education session. There may be a local group
but I have never felt moved to join it. I don’t know but I feel that because I’ve tried
to do so much research or to work things out on my own, I’m a bit self-sufficient. I
spoke to a nurse every six months at the surgery. I have my urine test done and
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blood test and then a follow up appointment. The nurse examines my feet. The GP
sees me on other occasions.
Now I am on five injections four times a day. I’m running out of injection sites. I feel
I am really on my own right now because the GP doesn’t know much about
diabetes; he used to argue with me until three to four years ago about testing. He
asks ‘why do I have to test more than once a day’: the test strips are pretty
expensive. I have them on prescription but they cost around £22.
Ongoing dialogue and reflections
Vera and I continued our dialogue filling the gaps in her story as I visited her on four
further occasions. She is unmarried but developed close confiding relationships with
her mother, sister and aunt who lived with her and supported her when she was
diagnosed with diabetes in 1983. When they died, she felt lost and isolated. A niece
visits occasionally with her husband and two sons but she relies mainly on friends
for social support and her Catholic church. A brother living in Guyana spent six
months with Vera during 2012 and a number of overseas relatives maintain contact.
This articulate woman has been very unhappy with the diabetic service received
from her GP. She described this service as neglectful and after repeated requests,
returned to the hospital service in February 2011. The full check up from the
consultant really pleased her. Vera admitted she has experienced issues with
managing her condition. At one stage she was having six insulin injections daily that
affected her skin. She had “highs and lows” when blood glucose readings varied
from acceptable on some days to high on others even when maintaining a similar
diet. One main issue was taking regular exercise due to many aches and pains
which made walking difficult. In consultation with her GP, she saw a traditional
therapist who prescribed herbal tablets which she had found calming and soothing.
Vera has become more vocal about her needs since I first interviewed her. She now
expects a better service from her local surgery. After speaking with a friend in
Canada who has diabetes she noticed that the UK lacks the team approach to
diabetes care. Vera is an active member of Diabetes UK and attends their annual
meetings. She invited the PAR group to attend one but inclement weather meant
only I attended. Vera has shown a dramatic change in the last six months. She is
more socially active, had a holiday in Israel and keeps in regular contact with the
PAR group members.
Reflection
When returning to Vera’s home post-interview, we re-read the transcript to coconstruct it. I had posted the transcript which Vera had changed substantially as is
her right in this research process. She was rather upset with her ‘spoken’ word as
opposed to the ‘written’ word and asked for issues regarding her father to be
omitted. I reflected that this was like a classroom/teacher scenario because she was
more interested in grammar and language rather than story content. As the
research is collaborative, I respected Vera’s right to amend her story. However this
entirely new way of doing research challenged me as it was not what I had expected
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and introduced a steep learning curve. The collaborative process took two hours to
produce a storyline satisfactory to us both.
Vera and I talked on and off for many months. I used the telephone and visited her
at home. Vera was sent the revised transcript. We went through the storyline over
the phone. It became clear she was knowledgeable and up to date about diabetes
as we discussed her strengths in managing her long-term condition. In an effort to
keep herself informed she subscribed to a diabetic magazine. She was confident in
managing her condition and keeping her glucose levels under control. Vera was
interested in joining the PAR group, offering her home for the first group session.
She knew I was new to this process as Professor Tina Koch supervised me during
her interview and expressed satisfaction with all versions of her story. Vera made a
number of changes in her life seeking support and guidance for living with diabetes.
I learnt from this first experience to neither take things for granted nor make too
many assumptions.
Marjorie’s storyline
My diabetes was first diagnosed at Easter time 1999. For about six months, ‘I
thought I had this thing’ because I would drink a two litre bottle of coke in half a
day. I was working so I went to the doctor and informed him that I was pretty
certain I am a diabetic. The doctor thought I was a hypochondriac because I had so
many other ailments. He said ‘no you are not’ even though I had been going there
every month. He eventually took a urine sample and said ‘no’, you are fine. At that
time I did not know you had to take blood samples because I had limited knowledge
about diabetes. None of my relatives had it.
I was at work on Holy Thursday that year and suddenly I went blind. I shouted to my
boss Paul, ‘Paul I can’t see’. I literally could not see so he came running out of the
office to investigate the matter and said he would call an ambulance. However I
wanted to go home so he called a cab and I phoned the doctors to make an
emergency appointment. I got the cab to take me to the doctors and the cab guy took
me in. I did not see my doctor but saw another doctor in the surgery who took my
blood and he said ‘why have you come to the surgery’? I answered ‘what do you
mean’? He answered and said ‘your blood sugar is really high’. He said ‘you are a
diabetic’ and I said ‘no I am not’. Anyhow he just said to me I am sorry but you
are’.
I was shocked with this diagnosis. The doctor gave me a prescription of Metformin
for some medication. I came out of the clinic screaming and crying because the two
things I said I would never want to have is diabetes and AIDS. I felt it would never
have got to that stage of blindness if my doctor had listened to me earlier and sent
me for blood tests.
I was under a medical team at the diabetic clinic at a major local hospital for a
while and I was informed that if you are not good at controlling your diabetes, you
may have to inject insulin. I said ‘well you might as well kill me because I won’t be
doing it’. And then someone said ‘it is all right they have got new methods’. You just
inject under your skin and you do not have to worry. I said ‘if that is the case that is
fine but if I have got to inject myself well you might as well say goodbye because I
am not doing it’. It is all I can do to stick my finger. If you see me do that you would
laugh I count .......3,4,5,6,7,8,9,10 how will I inject myself?
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When I first noticed my diabetes I was just getting fatter and partying at all the
Guyanese scenes. I ate all the Guyanese food, crisps and biscuits. However I did not
have loads of sugar and I was not feeling stressed at that time. I was doing fine,
apart from the fact I was fat. I think diabetes is brought on by obesity. I read that
fact ages ago. I do not exercise so I believe that is what brought it on. It is called
late onset diabetes.
The other belief I had is that I always thought diabetes was hereditary. No one in the
family except for a niece who lives in Barbados has diabetes. I never thought I
would get it. My niece and I laugh about it now. If I get a new ailment, I call her in
Barbados and say ‘how are you for this and she says I am all right at the moment’.
Then she calls me back and says ‘guess what I have it now’. She seems to follow
me.
Following the initial shock of being diagnosed with diabetes you learn to live with it.
Like I said, to have diabetes, was like the end of the world at that time. That was the
second worst thing that you could be told. It was just the end to me and it was just
awful like a sin being put on you. I suppose that is an extreme way of saying or
explaining being given the news but that was how I felt. I felt ‘why me, what have I
done’? I knew the answer. I was fat but I didn’t believe that at the time. When
people said you will have a heart attack or get diabetes I used to laugh. So when I
was diagnosed I felt like I had lost someone, I suppose it was like facing death at
that time. I was concerned a diabetic injected needles all the time. I did not know the
difference between Type l and Type 2 Diabetes.
In that first year I learned to live with diabetes: I suffered with diarrhoea and I am
pretty certain it had to do with the Metformin, but once I changed my lifestyle and
started on the diet, eating smaller portions, having breakfast, lunch and dinner I felt
I had more control. In the beginning I was just fighting the condition and really
thought it would go away but it did not. Then I started to I accept what was
happening and monitoring my blood sugar levels and ‘keep a chart’. But this
preoccupation became ridiculous and I could not live like that. It was making me
worse measuring this and writing this down. I stopped and just took my diabetes in
check.
I feel my diabetes is under control, except for two or three instances my blood sugar
level count is never more than 5.6 or 5.5. What I have experienced in the past have
been hypoglycaemic comas. Apparently I should not have been getting those
because I am Type 2 but I do have them. If the count increases to six, I am running
around the house in circles because I do what I am supposed to do.
At the beginning when I was first diagnosed I would never eat chocolate or sweets
but now I buy chocolate. There is actually one in the fridge now. I love fruit and nut
and normally eat it with moderation. I used to eat crunchies and would have one a
day before 1999. Anyhow I would not eat anything like that now. I am getting old so
I enjoy the little things in life before I die. I will be 64 this year. I was seeing
someone and he used to say ‘you can’t have that and why are you eating that’, a bit
of cake. For God’s sake I know what I am doing, I can have cake if I want because I
might be wrong or have the wrong attitude but I then compensate for the next couple
of days and I am careful. When I am shopping I look at people reading the sugar
count because they are on diets but I can’t live my life that way. If I know it is not
too good for me then I have to be careful how much of that I eat and enjoy.
Since 1999, I have made a lot of changes, mainly in my diet. Now I eat greens and
proper portions. I trim all the fat off the pork chops and do not eat any fat. In fact I
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hardly eat meat. I went through phases at first where I just ate fish and prawns then
I almost became a vegetarian. I used to eat lots of fruit and vegetables but I have
lost interest at the moment. I work two days a week but sometimes I do not get a
lunch break so I will eat fruit for lunch. I would have four plums, three nectarines
and more than five grapes. I like pulses so I eat channa which is chick peas. The
other Guyanese foods I eat are black pudding, pepper pot, garlic pork, metemgee
and chow mein but that is healthy because it is vegetables and noodles. Yesterday
for the first time I had a bit of yam, the first time for ages. I enjoyed eating it even
though it wasn’t nice. I like plantains but they have got sugar. I do not like the green
ones but the ripe ones.
Over the years your lifestyle changes so you have to change with it. A similar thing
occurs when you have diabetes you have to change with it otherwise you will be
unhappy. I have had practice in adapting from Guyana to England.
You would expect by now that they would have found out why you get diabetes and
how to stop it happening. I say to my grandchildren daily ‘... don’t eat this; don’t
eat that but watch out, do you exercise’? I say to my little granddaughter ‘you have
got to exercise because you know what will happen, you are slim now but you must
keep up with that”. I think exercise and healthy eating has a lot to do with how your
health is at a later stage in your life. When I look at all these obese children they are
not learning about healthy eating or parents are not educating their children about
it. If I come across someone freshly diagnosed the advice I would give to that
individual is to be careful and monitor their situation, not to do what they shouldn’t
do, to eat properly and to accept the situation and work towards keeping it in check.
Not just giving in and being complacent.
Sometimes I wonder whether the diabetes or the blood sugar level is affected by
other factors such as stress especially if you are stressed at work. I have not literally
sat down and thought about this but I was really strained at work. We had somebody
new who was asking silly questions every day. I would tell her the answers but she
would ask the same questions an hour later. She was supposed to work from three to
five but did not do the job in the allotted time. She was getting over time, working
more hours than me and getting paid yet I was doing part of her job. We only got
paid for what hours we did. At that stage I was a bit stressed so I wondered whether
stress has caused me to have diabetes.
As Guyanese living in England we tend to stick together. We have friends from other
places but I think we tend to keep more Guyanese friends. I know many Guyanese
who have diabetes but I cannot think of anybody outside of Guyana who has it.
When I was on holiday Guyanese people who had diabetes did not seem to be as
strict with their diet. There are lots of sweet things to eat there as everything has
loads of sugar, like sugar cake.
Guyanese who have diabetes have an attitude like me but at least I try and eat what
I should eat whereas they do not seem to follow a strict diet. I also believe that
doctors or nurses in Guyana give different advice to what we receive here. Fruits
have got sugar and in England we are educated to only eat small amounts of fruit
for example five grapes but in Guyana you can eat as much fruit as you want. It
seems that they are either being given different information or they do not
understand what they are being told. Nonetheless they are not stupid people. In fact
they are the most educated bunch around I think from the Caribbean.
My early childhood was spent in Guyana until I was fourteen and then we lived in
Barbados for a year. I came to England at the age of sixteen. My father was already
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here because he worked for MI6. When we had the uprising in Guyana, he phoned
us to get out so we went to Barbados. I come from a spy background, but lived a
reasonably privileged life. We had servants, a chauffeur, a maid, cook and gardener
and I did not have to do anything. We had the best and I went to one of the best
schools over there. However Guyana was a rather unequal society, you were not
equal with the man up the road who did not have a pair of shoes. However the class
thing worked the opposite way when I came to England.
In England I came at the worst time when we had that fog and smog. The bus
conductor walked in front of the buses with the torch lights so the bus drivers could
see. Oh it was horrible. It was really an eye opener so I could not understand how
people could live like it. It was hard coming from a privileged lifestyle to a different
lifestyle. There were lots of things that you were not used to for example, the
paraffin man selling paraffin for the lamps and the man who used to sell pop. It was
a totally different world so it was strange and it was fun but sad as well. I missed the
sun, sea, friends and all the privileges too. You did not have any of them now as you
were just like Joe Bloggs up the road. I was used to being the one on top in Guyana
and then I came and I became the one underneath. Yes it was a reversal of roles.
I attended the Edith Cavell to finish my education. At the beginning I had two
problems. I was mixed race and my hair was long but I was seen as black by some
people. Others saw me as neither one nor the other because in the 1960s it was not
really nice just after the riots. I remembered coming home from college one day and
was late. I did not get home on time because I was crying and I had gotten into a
fight. In actual fact I was beaten up by the black group because I made my own
decisions regarding who I was going to sit with at college.
I married and have three girls, one will be forty next month and another was forty
one yesterday and the eldest is aged forty-two and she is a diabetic case waiting to
happen. I tell her each day but she would not listen. She is massive, takes no
exercise and bigger than I am. She is size 22. I suppose though because I manage
my diabetes so well it does not cause her much concern. I keep threatening to take
her blood sugar level but I do not bother because she would not listen.
There is a diabetic organisation which meets regularly and do fund raising and they
have events such as walks but I have never attended. I am not unsociable but I
would prefer to meet with a Guyanese group of women who are diabetic because
you also have the other unique point of interest. You are all Guyanese even if you
may come from different backgrounds. I could do that. It would be nice to have a
forum that you can share your feelings and understandings about diabetes because
there may be other common factors that you have not realised that are important.
Ongoing dialogue and reflections
Marjorie is a bright and astute lady from a wealthy Guyanese background. Her
lifestyle radically changed when she came to England. Unlike Vera she was
satisfied with the transcript and did not request any changes to her long story which
my supervisor assisted me with using the PAR analysis framework. I visited her on
four occasions. Marjorie admitted that she ate whatever she liked but following the
first interview she reflected that her eating habits and lifestyle needed to change.
She now mainly eats salads and olives plus a small amount of carbohydrate. She
had a long list of physical problems from swine flu in December 2010 despite being
vaccinated, followed by investigations to small and large intestines during
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2011/2012. Substantial weight loss was a worrying time as she suspected
something more serious but this stabilised during the latter part of 2012.
Marjorie’s ex-husband had diabetes so she is concerned one of her daughters may
acquire the condition as she is overweight. She told me that she has a good
relationship with two but not with the third child and plays a key role in caring for her
grandson.
One of Marjorie’s issues is dislike of any form of exercise. She attempted to go for a
walk but found it painful, however is aware of the need for regular exercise. Another
issue is her immense dissatisfaction with the diabetic service from her GP and she
had to demand specific treatment. This made her more assertive in obtaining the
care and treatment required. Marjorie agreed to join the PAR group and host the
sessions.
Reflection
The interview with Marjorie was the second supervised storytelling episode during
my apprenticeship phase. I felt more prepared because I had given more thought to
this interview. I brought the consent form and study information with me but on
reflection should have posted it beforehand to give the participant time to peruse the
material. Marjorie signed the paperwork without any hesitation. I felt that there was
an improvement and development in my interviewing skills because I was thinking
through the entire process and reflecting on the questions I should be asking.
Tina, my supervisor enabled Marjorie to expand on issues within her story that I had
difficulty with. This was a very skilful way of interviewing and she served as a good
role model for me. It was a good comparison of the experienced researcher and the
novice learning the ‘trade’. Tina rewarded Marjorie’s strengths in self-managing. I
found myself echoing Tina’s comments and rewarding Marjorie for the positive
actions taken.
I reflected on the lack of diagnosis and support received from the GP. Although we
had interviewed two women to date, a pattern seemed to be emerging where health
care practitioners had not recognised or responded to the women’s symptoms
despite help being sought on many occasions. Why had these women not been
listened to? They all see their GPs frequently so why were they ignored? Is this a
racial question? In subsequent interviews I would pay attention to the relationship
between ethnic minorities (Guyanese women) and GPs. I realised that I needed to
refer to the literature to see what had been written. On the other hand the women
were diagnosed many years ago and one would hope the diabetic services and
responsiveness have improved. These questions were on my mind as I proceeded
with the inquiry.
In four subsequent conversations with Marjorie, I learned more about Marjorie’s
relationships with her daughters and step sisters in Barbados. I heard more about
the management of her condition without the diabetic service support. A few months
later it appeared to be a good sign that Marjorie had started searching the internet
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to increase her knowledge and understanding about diabetes. She also wanted to
know which services were available to her.
Pam’s storyline
My diabetes was first diagnosed in October 2006 but I am coming to terms with it.
My mother had a similar condition for 20 something years. I have always eaten in a
certain way to avoid getting this chronic illness. I managed to do that until 2005
when I had an accident. I fell off the bus and was on crutches at home. As a result I
had carers coming in who bought packet foods because I could not prepare the sort
of food that I would normally eat. I have always eaten healthily and taken
alternative medicines so to me it is surprising that I have problems now.
When I was originally diagnosed, my blood glucose level was just a little over
twelve so I made a firm decision to bring it down within the normal range. I had a
very wonderful nurse at my surgery who gave me a machine that checked the blood
glucose levels. I wrote down in a little book every day what I ate and brought it
down to just over six. I also have lots of health books that I read to educate myself
about my health and what to eat and not to eat. In addition I also had arthritis and
fibromyalgia before I was given a diagnosis so I was receiving treatment for these
conditions and taking alternative medicines. Getting diabetes was something extra
that came along.
I manage my diabetes with assistance from the diabetic nurse with whom I meet
every six weeks. I meet with my nurse and show her the completed booklet. She gave
me a list of low Glycaemic Index (GI) products. I realised that eating healthy foods
like croissants and bagels are not low GI products. I eat pitta bread and Naan bread
which are considered to be GI low. I have never eaten a lot of meat or fat so it was
much easier for me to manage my diet from 2006 to 2007.
Before 2007 my blood pressure was high but I did not want to take any more tablets
so I said to the nurse ‘I’ll bring it down’. I then went to Guyana, and while there
decided to eat healthy foods in order to bring my pressure down. Unfortunately
lowering my blood pressure did not happen. The journey was rather difficult
because I stayed with a friend in the Pomeroon and we had to travel over land and
then by a boat crossing quite treacherous waters in the Atlantic Ocean. I prayed all
the way. I was chanting because I am a Buddhist and covered my head with the
tarpaulin so I could not see the waves. If I did not have my faith I probably would
not have survived that trip. I ate healthily while I was there but when I came back I
had to go on tablets because the blood pressure remained high. I was not very
happy with this decision.
In terms of my medical management, originally I started with two Metformin, one in
the morning and the other in the evening. I don’t really like taking tablets, but I took
them because I realised the kidneys and all your organs in the body are affected by
diabetes. I knew a lot about this condition because of my mother so I took these
medications. My doctor has been very good because he monitors my diabetes. I
have blood tests every six weeks and have just had one recently. However I am
going to go to see him to ask about the testing equipment. I shall say to him ‘look I
have to do the testing because the test is what keeps it down’. Then I will wait to see
what happens.
I feel that I have experience in self-managing my long-term conditions because I
have managed my arthritis without taking any tablets. When I developed diabetes I
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was already taking Amitriptyline for the fibromyalgia. I always managed that
condition with herbs because I buy them along with aromatherapy oils.
With regard to the diabetes, I regularly check my glucose levels with testers but I’m
worried that I will not be given anymore equipment. The GPs have stopped giving
these testers and needles but I feel I can only manage my diabetes if I continue
testing the glucose levels. It is too expensive for me to buy so I should really have it
on prescription because I am on a pension.
But coming back to the diabetes, I’m not really worried about it because my mother
had it when she was in her fifties and she always managed it with diet. She lived
with it for a very long time. I suspect that they did not have the knowledge we have
today about healthy eating so they ate different things but she ate healthy foods such
as salads with lettuce and tomatoes. She died at 80 possibly because her kidneys
packed up and she did not want to do dialysis. However diabetes had affected the
eyes. She went into hospital and had operations on both eyes but the surgery was
not that successful therefore she was given a white stick which she never used.
She then sought help from an alternative practitioner who is a qualified doctor
called Nigel. Nigel gave my mother herbal medicine that improved her eyesight and
her diabetes. I firmly believed this medicine gave her extra years of life. She could
not walk due to problems with her legs that gave away while walking. She visited
her GP who informed her that the cells in her feet were dying and legs may have to
be eventually amputated. She consulted Nigel who gave alternative medicine for
another fifteen years or more and my mother continued to be mobile. She went
abroad to Paris, walked everywhere without the white stick. She also read with her
magnifying glass.
I believe you can cure anything because I’m a Buddhist and we have a great faith
that the body can heal itself. Buddhism teaches you about the body and through the
power of prayer you can heal anything. I have been a Buddhist for twenty four years
and it works.
I used to have a diary to manage my diabetes and wrote a page every day but
decided this year that I would take control. I was not going to do that. Nonetheless I
have recorded so much information that I have had to go and buy additional pages
because I could not fit everything in one diary. When I was working as a secretary I
had my diary for my boss and kept his appointments. Now I have a diary which is
not how I intended to spend my retirement. I was going to have fun, fun, fun but
now I use it to record when I take the tablets.
With regard to my ongoing other health concerns fibromyalgia and arthritis I have
self- managed these really well. I have recently had a knee replacement in January.
Before I was admitted I took prawns to build up the immune system. By the third day
after the operation I was pretty mobile going to the toilet from then on. I have never
looked back. After a few days I was walking and going up stairs so I was
discharged quite quickly.
Since I have been discharged I have only seen the physiotherapist a few times. I
continued to eat healthy foods whilst in hospital. I did not eat any cakes, dairy
products or sugar because it’s not very good for healing. I lost a stone after a
month. It was a quick recovery and when I saw the specialist she was impressed to
see that I was walking so well.
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I would like to talk about my Western diet and compare it with food I ate in Guyana.
I never agreed with tampering with food so I only buy organic eggs. I watch what
feed they put in it and always check and read labels. If it’s like margarine or
something like that and it has got 10 things, I always think ‘why has it got 10
things? It’s only oil and something”. I also attended a six weeks diabetic prevention
course which provided information regarding certain foods that black people eat
like sweet potatoes. I also heard that green paw paw is good for you.
I try to have a lot of leafy green vegetables and water based fruit because that is
what the body needs, more water. I drink a litre a day of bottled water and I put
about half a litre in my kettle as well. I have my list of foods that I avoid for my
arthritis. These include potatoes, tomatoes, aubergines and green peppers.
Occasionally I am late with eating and taking my tablets for my diabetes but I do not
worry because I know I can take care of myself.
One of the best things I attended was my six week diabetic course because they gave
me a book and the course was really instrumental in helping me to identify the foods
that I could eat. In the course we discussed the medicines that are prescribed. Then
we were escorted to the supermarket and the nurse showed us the reading on the
bottle of oil. We identified mono and poly unsaturated and highlighted what you
should look for when shopping, the one with the least saturated fat. Those were the
things I have learnt. I always read the foods labels.
In Guyana we ate very well and were quite healthy although I had a very English
upbringing with a beautiful home, lovely cushions, table cloths, china, silvers and
lamps. Our family socialised with many different nationalities such as Portuguese,
Chinese and White. My grandfather was a doctor so my father knew a lot about
medicines because he used to help with the prescriptions. We regularly took
medicines like Scots Emulsion, cod liver oil, cascara or castor oil, senna pods and
everything, and we ate vegetables, fish and meat My father would make us cough
mixture, honey, glycerine, and would tell us, ‘if you keep your stomach clean you’ll
never get sick’ so I have held on to these beliefs.
When Cheddi Jagan was elected, we had the riots in 1961/62. This change in
government brought a different set of communist values so we all decided to leave.
None of us wanted to leave our country but my parents were concerned for our
welfare. I left originally with two of my sisters but my dad was already in England.
My mother and younger sisters left Guyana the following year and we all lived in
Kent. My mother returned to Guyana a few years later with my youngest sister when
a change in government took place. Another two sisters returned but they could not
settle due to the political situation so they all eventually returned to England.
I have a lot of support from Guyanese friends. I talk regularly to them because
everyone is now retired and they have free time, We just talk about when we were
teenagers, the boys and parties and life in that period of Guyana which was really
wonderful. No, we had a wonderful life in Guyana didn’t need to leave. It can never
be repeated, and my sisters struggled here in England because they had such a good
social life there and we knew everybody in Guyana.
I came to England May 1962 at the age of twenty four. It was grey and foggy.
Buildings were black and people had wallpapers and carpets that showed little
colour. The environment seemed to be very hard and cold. Within one week of
arriving I got a job with Thomas Cook but never experienced race prejudice. I was
treated well and had the most wonderful friends of various nationalities. Yes, I fitted
in and there were some Guyanese here who also grew up like me, my god-sister was
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here and we attended parties all the time. We would get all wrapped up in our coats.
We did not care how cold it was once it was party and we would travel all over. I
remembered I used to live in Balham with my aunt but when my mother and sisters
came the next year we got a house in Kent, so I used to go up on the train there. We
had a lot of fun. Everybody was white but when I attended the reunions such as St
Joseph’s and Queen’s college that gave me the opportunity to reacquaint myself
with people from Guyana. We could talk about roti and curry, patties and all the
Guyanese foods that I missed. I was mainly eating English food because I never
cooked my traditional foods. As Guyanese we would travel great distances to see
each other. This happens regularly in countries such as Canada and America. My
cousins travelled from Scarborough to Ottawa to attend a barbecue. We just love to
socialise with each other and rarely worry about how far we need to go to do this.
I don’t worry about my diabetes now. People ring me up and say how are you? I
say ‘I’m fine’. I don’t suffer, and I sometimes forget I am ill. However the routine is
taking up all of my time. I would love to have more time to do what I want to do and
I hope one day I can get to a point where I do not have to take all these tablets and
eat the right foods. I would like to have more time to do what I want to do which is
visit my friends, go out to a museum or theatre or see the ballet.
Ongoing dialogue and reflections
Pam came from a wealthy background in Guyana but now lived on her own in a flat.
The family migrated to England and lived a middle class lifestyle. She has six
sisters; five of them have diabetes, two with serious complications. Pam talked
about her experiences in Guyana and missed her home country. She has fond
memories but recognised that things in Guyana had changed since her childhood.
Pam had not married and had no children.
I visited Pam at home three times but due to her busy schedule kept in touch by
phone. When she received the transcript, she felt the speech language was not
grammatically correct and also wanted to remove some information. I affirmed that
she had the right to remove this. During one visit we made the suggested changes
page by page. It took time but was important as she felt the data recorded,
transcribed and analysed were her story and not my interpretation. This is
collaborative research. I used their language when co-constructing the participant’s
story so was pleased when changes were made as it secured participant ownership.
In March 2011 Pam developed a facial problem causing her concern because the
doctor could not provide a diagnosis. In later telephone conversations, she became
aware it might have been linked to diabetes. She displayed strength in managing
her condition, keeping a food diary, using alternative therapies, attending a diabetic
course and reading to keep informed. Pam said she found peace in converting to
Buddhism and chants when stressed. She recovered quickly from knee replacement
surgery.
Pam felt she had a supportive GP and an accessible diabetic team but having to
pay for testing strips angered her. She believed in self-management and termed it
‘taking her body into her own hands’. The care of her sisters appeared to be a big
responsibility. She worried about them and their deteriorating physical and mental
health. One was sectioned under the Mental Health Act. Pam is due for another
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knee replacement with mixed feelings about surgery and being incapacitated as last
time she needed home care. Pam was keen to join the PAR group.
She suspected, but was not convinced about, a genetic link because her sisters,
mother and grandmother all had Type 2 Diabetes. The dialogue to explore this
connection was on-going. Pam believed her condition arose when she could not
prepare her own meals following a spell in hospital.
Reflection
I conducted this interview on my own but felt fully prepared as an independent
researcher. Information about the inquiry had been sent and I arrived at the agreed
time but it seemed as if Pam was not expecting me. She was talking to her carer so
I waited until she left the room before commencing the interview. Pam had not eaten
all day and I could not interview her until she had prepared a meal. I had concerns
about her physical state but made no comment. As she ate, I wondered about
conducting the interview as I had come a long way but felt her needs must come
first. Interruptions from the carer meant stopping the recording and re-starting when
convenient. Perhaps I should have arranged another visit but decided to persevere.
Pam discussed how her diabetes fluctuated as levels would be consistent but then
could increase significantly. She appeared to be managing but highlighted that
remembering to take medication, cooking and recording what she ate was a full time
job. Her sisters constantly made demands expecting frequent visits. As they lived
forty miles away Pam travelled by coach experiencing mobility problems as she
used a stick. She often talked about stress being a significant feature in her life and
I listened without comment. Pam finally took action by reducing her visits to her
sisters.
Bea’s storyline
My diabetes was first diagnosed twenty years ago in 1990. I come from a family of
known diabetics. My grandmother on my father’s side was diabetic, my father was
diabetic, my uncle in Canada was diabetic and I had a cousin who was my father’s
niece, she died the other day at the age of 68 with diabetes. As a child I used to say
‘Oh I don’t want to get diabetes, I hope I don’t get it’ but lo and behold I got it even
though I tried not to have sugar in the tea and didn’t put on too much weight.
One of the first symptoms experienced was when I came home from work I would
feel a bit dizzy. I didn’t know what was wrong with me and then I started to lose
weight. I decided to see the GP and informed him how I was feeling but doctors
don’t particularly like you to tell them what is wrong with you during a consultation
so instead of doing fasting blood sugars the GP just did a random blood sugar test.
He did not tell me the results. When I went back he said ‘I was all right’. It was
totally out of the blue one day he told me to come to the surgery and I had the
fasting glucose test done. Only then did he inform me that I was diabetic.
Yes, sometimes people do exhibit symptoms such as feeling very thirsty but I can’t
remember feeling like that. Working as a midwife I used to have limited time for a
break for lunch or a cup of tea. You tended to work for long hours before you could
get a drink so I didn’t think anything was wrong with me.
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Once diagnosed I was controlled with diet then later my diabetes was managed with
the drug Metformin 500mgs tablet three times a day. These tablets were then
increased up to a 1000 mgs (two tablets) three times a day. However the staff at the
hospital discovered that the Metformin interfered with my kidneys so it was
discontinued. Consequently I had to go to the hospital every six months for a kidney
function check-up. That has now been extended to every nine months. Apparently
my kidneys had not been functioning properly because when I was on the Metformin
tablets I developed a urinary problem and was failing to pass adequate urine.
At first nobody would listen to my pleas that there was a problem with my kidneys
until my GP eventually took heed and had me investigated. As a consequence the
Metformin was discontinued and two weeks ago I was put on long acting insulin by
the GP. I have seen the diabetic nurse twice already but we haven’t yet decided
whether I should have the long-term or short-term insulin. You can have it twice a
day or a booster in the evening so I need to keep the readings of my blood sugar
levels. This will determine whether I need long-term or short-term insulin. I am
going back next month to discuss with the diabetic nurse Mary which insulin will be
best suited for my condition. I have breakfast in the morning when my first sugar
test shows a level eight or nine but it comes down in the evening. Mary has
suggested that I will probably need an insulin boost in the evening.
I am aware that if you take too much insulin you can go into a hypoglycaemic coma
or faint. I have never had any type of comas in my life so it is important that I take
the right amount of insulin. Mary has said I should start on 10 millimole and I can
increase it to 28 millimole. I am now on 22 mmol so I am feeling all right. I don’t
perceive one injection per day as being a problem because you don’t really feel it
when you inject yourself. I use an insulin pen.
I have asked the doctors, ‘could you transfer me to the hospital’? I rarely visited the
GP diabetic nurse at the clinic, only once a year but now it has been increased to
twice a year. However the GPs prefer you to stay with them. They have said ‘no you
stay here, we will look after you’. I know there is a diabetic clinic at the local
hospital where patients are seen but the GPs have suggested that they carry out
similar checks in their surgeries. I feel GPs don’t check very often.
I know I have Type 2 Diabetes and it is a progressive disease but you learn to live
with the complications. Having diabetes is not a very nice thing. It affects all your
organs in your body such as your kidneys, eyes and feet. So you have to go to the
chiropodist every three months for them to cut your nails and to the eye specialist to
check on your eyes. I take beta-blockers, another tablet but it also affects the back of
my eyes. I had my cataracts removed but I have to go back next month to the
Moorfields clinic for them to have another look at my eyes.
You need to be careful with the diet when you are a diabetic. Too many starches,
rice and pasta sends the blood sugar level up high. But I can eat plantains
especially the green ones, as these have lower sugar content. I have a wellestablished routine: breakfast in the morning is porridge and a cup of tea but I don’t
eat bread or anything else. At lunch time I have a sandwich either salmon or fish or
meat and in the evening I normally eat my main meal. If I eat rice in the evening, it
is just a big spoonful. I can’t eat too much rice because that really increases my
blood sugar level. I try not to eat too much meat or chicken but I eat fish. I
understand that if I eat meat my kidneys have to work harder so I avoid it. My blood
pressure is under control now. I try to manage my diabetes adhering to a healthy
diet but now and again you see something that is sweet and you eat it. Yesterday I
ate a piece of cake at my sister’s and when I took my blood sugar later that day it
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was16, three times higher! So I should not have had the cake. At the back of my
mind I always think that I must keep this Type 2 Diabetes under control.
I know you cannot get rid of diabetes but several Guyanese friends have tried
alternative treatments and herbal remedies. A friend of mine from Malaysia who
also has Type 2 Diabetes informed me of herbal treatments which he suggested can
help you get rid of the condition. One such herbal remedy is beech nut from
Malaysia. You drink it in a tablet form for one or two weeks. I don’t believe this, but
he said he will buy some and give it to me. A school friend of mine from Guyana
who is now living in Florida informed me that she got rid of her diabetes. Over the
phone she told me that she was on tablets but did not say what they were. Perhaps
the pancreas starts working again. A Guyanese friend’s son sells karela tea. Yes it is
very bitter. Another friend said cinnamon helps the blood sugar to come down. I
took all these herbal preparations before I started on insulin and I still continue to
use them.
My Buddhist faith also helps me come to terms with my diabetes. A friend
introduced me to this religious group about seven years ago. We were Catholics but
I didn’t agree with going to confession. I thought why I can’t talk to God instead of
having an intermediary to talk for me. Buddhism helps me a lot because it enables
me to understand that when you die you will come again. You know you have spring,
summer, autumn and winter but winter always turns to spring. Reincarnation: it is
just the same. We human beings will die but we will come back in a new body. This
faith helps me not to be afraid to die. I find this comforting. Buddhism is
humanistic in its approach.
I worry about my family getting diabetes. You tell your children and grandchildren
how it is and what to do. It is difficult to know what information is being understood.
My son has taken care of himself. He takes five fruits a day and always has
vegetables. If I don’t cook a meal he enquires where are your vegetables and fruit? I
am not sure what the other two children are doing.
I believe stress can have an effect on you. I found midwifery very stressful because it
is not one life you have to think about but two; the baby and the mother. I think that
stress may be one of the triggers for diabetes in combination with my genes. I
always found the job stressful even when I returned to it in 1987. I didn’t really
want retire in 1997 but I thought I better give it up.
My early life in Guyana was beautiful. I went to the convent school. I had all my
friends. You could go to parties and do things together.
It was very easy for Guyanese women to come and do nursing in the UK. I always
wanted to do nursing and I had applied to the hospital in Georgetown but they did
not offer me a place. I left everybody in 1955 to come to England. I was on my own
on a boat called the Antilles. It was the British Council who met me and took me to
the Lewisham hospital to start my training. I didn’t have any relatives or anybody
living in this country. I was scared coming on my own but eventually I made friends.
Lewisham hospital was still a bomb site in 1955. It was all rubble around us. Things
were still difficult for the people here.
You know there were tensions between coloured people and English people. People
here were not accustomed to seeing coloured people around. One notice on the door
said coloured people and dogs were not welcome.
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I did midwifery in the 60s, and then, with a Jamaican girl, started to work as a
community midwife in Tottenham and Hornsey. We were the first coloured people to
apply for that job. The supervisor said as we were the first she was employing, if we
progressed well, they would employ many more coloured people. English people did
not like to see coloured people coming into their homes to deliver their babies. It
was the Middlesex county council that employed us. So we blazed the trail for the
other girls to come.
My friend and I had a flat together when we were doing the midwifery and we
learned a lot about living in England. I didn’t know that in England at that time,
some houses did not have baths. They had a toilet but no baths so we had to go
elsewhere to bathe. It was nice and clean so when you finished having your bath,
you used to say ‘finish’ then clean up afterwards. Oh this was an eye opener.
In 1960 I got married and continued to work in England whilst my husband trained
as a lawyer. We lived in many countries. First we went to St Lucia where we lived
for a time. Then we went to Jamaica where he taught at the university. From there
we moved to the Turks and Caicos Islands. He worked as the Attorney General
before moving to the Bahamas. Of course I did nursing in the Bahamas and the
Turks and Caicos. I didn’t work in St Lucia or Jamaica. Before he retired he went to
Belize where he spent a number of years. In the meantime, I got tired of living away
and I thought I should get some kind of pension so I came back to England in 1989.
I did a refresher course and then I went back into midwifery until 1997 when I was
diagnosed with diabetes by my GP.
I enjoyed my work but it was very hard and stressful. In the early days of midwifery
when someone had a miscarriage, you would get rid of the foetus by putting it in a
bucket. In the 90s paper work determined how you spent much of your work time; it
was ridiculous.
Both my father and mother died in their sleep. She was the one who used to take
care of him but he died before she did. He was only 68. I felt bad and I felt so upset
that I couldn’t even think but anyway I got over it afterwards. You get over these
things but it takes a while. I couldn’t even say goodbye to them or anything but that
is life.
I really try hard not to put weight on, eat sugar, I don’t do this and I don’t do that
and I try to lead a healthy life, I do all of that and then I still develop diabetes! It is
probably the stress. I think stress has something to do with it.
Ongoing dialogue and reflections
Bea is a retired diplomat’s wife and is a quiet woman. She enjoyed her childhood
and early adult life in Guyana. Bea came to England on her own in the 1950s to
study nursing. Her husband was a lawyer and England became their country of
residence. Long periods were spent working and living abroad with her husband as
diplomats whilst their two daughters and one son were in boarding school so she
wondered whether this absence affected their relationships.
Her son had moved away but now lives with them. Bea has a strained relationship
and little contact with one daughter but a good one with the other who is married
with two daughters. Whilst in St Lucia she took responsibility for one of her
granddaughters when her daughter could not cope with both. She returned to
England following her husband’s retirement to work as a midwife but retired due to
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diabetes in 1997, associating stress with work as a midwife. She reflected this may
have caused her diabetes despite taking every precaution including no sugar, small
food portions and eating healthily. Some of her personal stress has been alleviated.
Bea missed both her parents but refrained from talking about their deaths whenever
the question was raised. Bea believes Buddhist teachings and herbal therapies like
karela tea, beechnut and foods such as green plantains and fish help her to cope. I
interviewed her three times and from her conversation, it indicated she was
managing her diabetes. She was aware of a hereditary component recalling a
history of diabetes on her father’s side (who ate whatever he wanted) but none
diagnosed in her mother’s family.
Bea was prescribed metformin but developed kidney problems. The metformin was
withdrawn and she has since been prescribed insulin. She is self-managing with a
strict diet but has the occasional lapses eating sweet things like cakes. Her pattern
of managing the diabetes is explained as “cheats” compensated by being ‘good’ and
sticking to the diet the next day. Bea talked about finding a cure.
After an active life she can only walk short distances. Bea maintains regular contact
with three sisters and a brother, the youngest sister has diabetes. We discussed by
phone how she managed her condition on insulin. She felt she had more control
and flexibility in keeping the blood sugar levels down depending on what she
planned to eat that day.
Bea believes that health care practitioners at the GP diabetic clinic do not
understand her needs, denying her a service that should be a right, and she asked
again to be referred to the hospital. Her diabetic neuropathy is now being treated.
She feels having to wait a few days before her glucose sticks prescription is
renewed affects her management of the condition.
Bea made a concerted effort during this inquiry to exercise daily and was eager to
become a member of the group offering her home as a venue but mobility problems
meant she required a lift to the sessions elsewhere.
Further conversations revealed she had a series of recent falls which are being
investigated. I noticed too that her husband has had memory lapses and had
forgotten to give her my messages. Following a discussion, Bea has asked for him
to be referred to a memory clinic for assessment as he may be showing early signs
of dementia.
Reflection
I was warmly received at the first interview and Bea confirmed the transcript was a
true record of what had been said when it was returned for co-construction. After I
completed the analysis and developed the storyline with Bea, I sent my supervisor
our combined effort. Being mentored in PAR is important to instil confidence.
Guyana was on Bea’s mind. Bea recalled a celebrity kind of existence of large
houses, servants and chauffeurs and travelling with her husband to many countries,
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in comparison she lives in a modest London house and accepts they have to live
carefully on pensions. On reflection I could have explored the losses in her life of
parents, children away in school and way of life. She admitted missing her parents
but not the diplomatic life. Perhaps my type of questions did not always get the
expansive answers that I had observed in my supervisor. This was a skilled process
that I was still getting to grips with and learning about for further interviews. In my
continuing dialogue over a year with Bea I learnt a lot more about her and her
family.
Bea and I established a relationship as the inquiry progressed. She showed a
number of strengths in managing her condition and making decisions on improving
self-management. Her action of taking more exercise increased daily as she noticed
how much better she felt after a brisk walk.
Jane’s storyline
I was diagnosed with diabetes about 10/11 years ago after I retired from my
position at a large department store. I did not have any symptoms but was aware
that my father and grandparents had died from this condition so I took preventive
action by checking regularly from the day I came to England to see if I had acquired
it. I continued checking every two years with the GP who has been very supportive.
He gave me my glucose tolerance test. Eventually my doctor informed me that ‘you
are on borderline’ so I tried to rectify this by joining exercise classes and going to
tea dances in the day.
I was on a diet only for the first three years but when I saw the consultant he
suggested that I should go on Metformin. I have been on Metformin for seven years.
I initially started with 2 Metformin daily but that dose was not effective so the
consultant prescribed half a Glycoside for me to take daily as well. I see the
consultant every six months for blood tests and my feet are checked. Once a year my
eyes are X rayed and the glaucoma specialist sees me twice a year for a check-up. I
get my meters free from the hospital to test my blood and I get the sticks from the
doctor. Everything is free so I do not have to pay for anything. I never take any
other medication just what the doctor has prescribed. I do know that the metformin
tablets give you kidney infection because that is what my dad died from and I know
other people who have problems with it.
During the early stages of the condition, my glucose levels were perfect in the
daytime but when I went to sleep and woke up in the mornings, my sugar levels were
always high and that is the case up to now. These remain high at 7 and 8 in the
mornings.
I was sweating a lot during the night because I hadn’t eaten all night and the
consultant believed that I was having a hypoglycaemic coma. I felt the body was
going hypo at night as I would be wet all over. Then I did the ‘all through the day
test’ and I became aware that my levels cause no problems during the day however
the problem occurred at night because in the day I am very active and feel fine. If I
don’t tell people that I have diabetes they would never know because I do everything
that a normal person would do.
The consultant suggested that I ate a slice of bread before going to bed and the
sweating eventually stopped. About two years ago I was started on insulin so I take
insulin once a day at night. From what I know I am going to ask him to take me off
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the tablets and introduce more insulin. This new regime is now starting to make a
difference because I know exactly what to eat.
My diet is simple. For breakfast, I eat two slices of bread in the morning or
sometimes I have two eggs a week, fresh salmon or maybe cheese. I don’t drink
milk. I eat a lot of salads including lots of cucumber for lunch and my dinner
consists of a little rice and a stew of something. I will eat a lot of salt fish, okra and
karela or maybe a potato. I don’t overeat because my stomach can’t take it. I would
eat about three or four times a day but this will depend on how heavy the meal is.
In order to keep up to date with my diabetes, I have joined the Diabetes Wilderness
but I never have time to read the magazine which comes very month. I start reading
the magazine but I am a busy person. I sit on the neighbourhood forum and several
other committees. I don’t know where I find the time. I used to attend diabetic
classes but have stopped. I still do my shopping, some catering and attend dance
classes to keep active. I also used to go to dances in the evening with a friend who
lived up the road but he died. I occasionally still go on my own but because I live
out of the way coming home late at night can be problem. I used to come home on
the bus 3 o’clock in the morning and my granddaughter says ‘nanny why are you
walking on the street so late by yourself’. I don’t go as often; instead I go to tea
dances.
In mid-April 1973, I came to England with my son who was 14. At that time Guyana
was rough therefore a friend of mine said ‘I want to tell you something I want you to
take your son and get out of here’. He asked me ‘where in this world would you
want to go’ so I said ‘I would like to go to England’. He said ‘give me your
passport’ and he got passports for me and my son plus spending money and said
‘here is the date you have to leave here’. I was happy to leave but if he hadn’t sent
us I would have remained in Guyana. I was born and grew up in Georgetown and
was very comfortable, never worked only when I was very young. However I didn’t
get the same kind of education like you girls got, I only went to the Modern
Educational Institute which turned into Guyana Oriental College for eighteen
months. Half of the time it was closed anyway, I just wasn’t the lucky one. My step
brothers and some of my sisters were educated in Guyana. One sister chose to go to
Carnegie school. My youngest sister went to St Joseph, the one who has cancer went
to St Joseph and the other one finished her education in America. They went over as
children.
I lived with my Dad for a short time while in England but then moved out and got
my own place. I didn’t really know my Dad. I never lived with him but I knew he was
sick that is why I came to England. However he died at age 69, 6/7 years after I
came. His death did not really upset me, he was Dad and that was it. He had his
other children.
When I first went to work as a chambermaid in a hotel, I used to get up at 6 o’clock
in the morning and go to work and come home at 10 p.m. at night. I cleaned toilets.
I did this job for 18 months until I married.
Due to the unsocial hours and not wanting to work week-ends, I changed the job.
When you want to have a husband you have to be around for them so I went to work
in the store and I stayed there for 26 years.
The job was a reasonable one. After all it is money and you had good and bad times.
When all the changes were introduced like stores opening on Saturdays to suit the
needs of the market, I originally worked half day on Saturdays then it changed to the
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whole day on Saturday. I left when they were just about to open on Sundays. They
said they had to match the market. You were given an extra day off for working on
Saturdays.
I have lived here in this house since August 1980 and I am actually finding it
difficult to move. My husband died in 1990 in this same house. I realise that I need
to get a smaller place as this one is now too big house for me to clean You have all
of upstairs and all of here, and there and down there – (Jane is pointing out the
various rooms in the house) I have bedrooms upstairs but I have to come downstairs
to the toilet during the night. If I am not in the kitchen I am sitting here in the lounge
and when I am tired, I go to sleep here. I have accumulated a lot of rubbish over the
31 years because I am always engaged in some sort of activity like making dolls or
other crafts.
Now that I am retired and 71 years old, I still lead an active life. I get support from
my family and friends. I live 70% of my time on my own but my granddaughter says
she lives here too. I have my son and his new wife, my ex daughter in law and the
two children and hundreds of friends. If you stay here long enough the phone will
start ringing and it won’t stop. I also have my church. I have attended the same
church since I moved to this house so I am part of the furniture of the church. I go to
church almost every Sunday. I am not a devout Christian because if I want to swear
I am going to swear. I am not a Godly person but I believe in God.
I am a very active person in the Guyanese community. Everyone knows who Jane is.
You only have to say to them ‘do you know a lady called Jane, a Chinese lady, who
dances’ and they will find me. You go to the high commissioner and say do you
know Jane and he is going to say I know Jane.
I support the Guyana high commission that has a stall at the commonwealth fair.
The next fair is on the 13th November and I have a stall there because I teach
children to make jewellery. I sell my own jewellery and make a lot of craft and sell
too.
Well my sister has got cancer. She lives in New York with my step Dad who is 95. I
have just recently returned from America so I am waiting to see how they are
coping. I have other brothers and sisters who are there but they have their own
lives.
One brother says to me, ‘oh I’ll look after Daddy’. Where is he? He lives in New
York so I said to my sister ‘is Daddy eating’? She said that ‘he is eating pizza
because she can’t cook’. When I went in February you actually had to lift her out of
the bed because she didn’t have the strength to do anything so I was cooking soups
and food to make her strong. I felt guilty that I am here in England and he is eating
pizza. I want to cry some days but then life has to go on.
My step Dad has more children and they should be more supportive. I am only a
step child but being the eldest I feel responsible for him. That is how I feel. He is
still kind of healthy, he doesn’t take tablets, drives a car and he can tell you
everything that is going on in Guyana because he gets the free papers. None of my
step brothers and sisters has diabetes. It is just me.
I am interested in the group and will come to the sessions if I am not busy but I do
have a lot of local issues.
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Ongoing dialogue and reflections
Initially I found it difficult to establish a relationship with Jane but we kept a dialogue
going following my initial visit. She spoke briefly about her early life in Guyana and
move to England. Jane is a socially active woman who loves dancing, belongs to
many clubs and hosts fundraising events for Guyanese charities. Totally absorbed
in Guyanese culture, she also caters for Guyanese events. She eventually did not
join the group due to her many interests but was keen to keep in contact with me. I
felt I might be able to persuade her to join the group later.
Jane stated she had no problems with her diabetes management, showed strengths
in managing her diet, taking prescribed medication, keeping active and regularly
using public transport. When diagnosed with diabetes she felt prepared because
she was always checking for the condition as her father and grandparents died from
it.
In May 2011, post interview I sent her transcript and phoned to discuss but she had
not read it, being upset by the death of a sister from cancer living in New York and
making arrangements to fly there. Jane promised to make contact with me on her
return. I offered my condolences and ended the conversation.
Not hearing from Jane for over a month, I phoned with limited success until August
2011. She had returned from New York but was still grieving for her sister. Clearly
she did not want to communicate so we arranged to resume contact in a few weeks.
When I called a month later, Jane was more responsive but problems with the local
council had occupied her time. She highlighted that she was still busy but managing
her diabetes and the local hospital consultant had said it was under control.
Although we communicated over a long period she declined my offer to visit again.
She listed all the things she did that kept her busy but when I questioned if she
would like me to continue she said she found the calls supportive. We arranged a
longer conversation in March 2012 to follow up on the story sent to her and went
through it together reflecting on what was said. Jane did not attend the PAR group
sessions but still wanted to be a study participant so I kept her informed of the
issues raised.
I was interested in hearing Jane’s responses to what being Guyanese meant as this
had been discussed in the PAR group. She saw it as just the place where she was
born but I learnt more about her life in Guyana. She described living with
grandparents in a big house with servants as a class thing. Her father did not live
there but he came for dinner daily at six p.m. She did not see her mother. She went
to live with her father and step mother who took her out of school and life became
difficult. She had no secondary schooling.
I asked Jane her reasons for not attending any PAR group sessions. She felt it was
for people with nothing else to do. She considered herself well known in her
community and involved in many activities such as the neighbourhood forum. She
informed me she was going to New York for a few months to look after her 95 year
old step-father and an aunt in Toronto.
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I contacted Jane on two more occasions on her return and she invited me to a
Guyanese dance she organised. We met there and she seemed well and felt she
was managing her diabetes with no issues to report.
Reflection
Jane was a difficult person to engage with and seemed prepared to talk although it
took time to establish the relationship. On reflection, it became acutely obvious that
she was not keen to talk about her life in Guyana or her long-term condition. She
made me feel welcome when I arrived for the initial interview, offering Guyanese
delicacies she made especially for the visit. I asked a few questions but did not
prolong the interview drawing it to a close with the intention of returning. I am not
certain why she was not keen for me to visit again. I noticed that her large house
had papers and large black bags lying everywhere. She kept making excuses for its
condition to which I responded that I came to see her and not her house.
Jane eventually gave me some feedback about the transcript and her storyline
stating it was an accurate record of what was discussed. I accepted her opinions
regarding the group because she had the right to refuse if she felt it was not
needed. I made an assumption that being Guyanese she would welcome meeting
with other Guyanese women but Jane made it clear not everyone wants to attend a
group related to their condition.
The relationship with Jane developed over time by telephone when she spoke more
openly about her diabetes. On reflection, could I have done this differently? I still do
not know but learnt from the process that perhaps I should have left the situation
sooner.
Shirley’s storyline
I was diagnosed in 1998 when I was still at work. I just wasn’t feeling right. I went
to see the doctor several times but she didn’t know what was wrong. She put it down
to stress because I was having an Ofsted inspection at the time. The symptoms were
tiredness and then eventually my eyes became blurred but I didn’t understand why. I
didn’t realise that my vision was blurred until I was coming up the road one day and
I could hardly read the shop sign clearly. I started to lose weight rapidly so the
doctor investigated it further and said ‘we have got a result now, I can treat you’. It
came as quite a shock when you are told that you have got diabetes because it is like
the end of the world. I just accepted it really and I did quite a lot of reading around
the topic from a special book that I have acquired.
I have been on tablets since then. I started off on one set of tablets but that didn’t
keep the diabetes under control so I was put on a second set called Metformin which
I am on until now.
I had to change my eating habits as I never liked to eat regularly. I ate erratically,
so I was forced to eat properly and at the correct time. If I didn’t eat the glucose
levels dropped very low so I had to eat something if not I would get a hypoglycaemic
coma and that is not very nice. The coma occurs when the blood sugar levels drop
so low that you lose consciousness if you don’t get something sweet to drink or be
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attended to quickly enough. It is about being able to regulate your diet and this only
happens if I go out and don’t eat for a while.
Coming back to the management of diabetes and food, I never liked sweet things.
Sweet things do not have anything to do with diabetes, it is another myth. I have
about two slices of toast and two big cups of tea quite early in the morning for
breakfast but my blood sugar drops by 11a.m. I get my intake of fluids and then
depending on what I do I may have a banana or biscuit. At lunchtime, I feel guilty
because I don’t sit down and have a proper lunch whatever I have in the house to
eat pasta or something light I normally eat. In the evening I have a proper meal.
I don’t like cooking. It is not my strong point. Someone said you can’t come from
Guyana and don’t like to cook. I said ‘I am sure not all Guyanese like cooking’.
Colin, my son who lives with me likes curry but I can’t eat it due to all these various
tablets that I am taking. I can’t digest it very well. I eat peas and rice but without
coconut. Cook up rice is not cook up rice without coconut but I keep away from it
due to my cholesterol level. With regard to a proper Guyanese diet I think I have
lost the taste. I still like rice but again I know some people with diabetes can’t eat
rice but I find that is my main source of carbohydrate, I like cassava now and again
and eddoes in soup. My choice there is not very wide. I stick to cassava, plantain
and rice and I eat less bread.
One of the problems of this condition is neglect and if you neglect yourself then it is
not very good. My GP said you have to bother because it is a degenerative disease
and it is not going anywhere. I knew there is no cure for it so it is best to accept it
and to learn to live with it. You don’t feel well and you hope that you will feel better
tomorrow or the next day. Some days I experienced quite a low unexplained feeling.
My blood pressure and cholesterol are stable at the moment.
It is recognised that in having diabetes you have to keep it under control but you
have to continue taking those tablets as well. I don’t usually do the finger prick with
the sticks like I used to two or three years ago. I don’t get the sticks so easily now.
There is a bit of controversy at the moment because the first thing they tell you is
that it is very expensive and if you are on tablets they are very reluctant to dish them
out. During the earlier times of the condition you would probably test in the
morning and evening but as the years go by you get to know your body so there is no
need for so much testing.
Do you know Balance Magazine? Sometimes people would write in letters
discussing their condition. Unfortunately doctors are blinkered. All they see is
diabetes and they don’t see other things that might well be wrong with you.
Sometimes you want to tell them about something else that is not right. During the
months of January and February I really wasn’t feeling well. I had the flu jab and I
was getting flu like symptoms and I couldn’t understand it. I went into the doctors
and luckily it was my doctor and from what I gathered she said ‘why are you not
feeling well’, it couldn’t be the results of the flu jab so she sent me off for some
blood tests. When the test results came back, these were normal except for the
kidneys. The doctor was still unhappy with these results so further tests were carried
out which eventually came back normal.
I don’t know how much you are aware of regarding problems Black people have
with their kidneys especially those with diabetes who suffer from kidney failure. The
kidney results are analysed differently in Black people as opposed to non-Black
people. My surgery is very good at keeping an eye on me. Apparently the doctors
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calculate and interpret the test results differently. It is something to do with the body
mass.
It is not just one thing to say you have diabetes; it is all these other things like heart
problems that can affect you. If it was just the sugar level then that wouldn’t be too
bad but it is the consequences of the sugar level. At the moment I have a review
every four months and I do a blood test – HBA18c. It is a long term test that you
have every three months and also they are supposed to do a kidney function test
once a year and a liver function test once a year but I know some people who don’t
have it done. I ask them and I do read a lot and sometimes I remind them that I am
due for a kidney test?
How do you get through living with diabetes, I don’t know if I have ever thought of
it that way. ‘I pray’. I suppose it helps but I try to look at it, I don’t know, in a more
abstract way but that is the wrong thing to say. I suppose living with Colin who
looks at everything scientific because he did his PhD in science so one can’t help
looking at things that way. I don’t think you can really separate them. I try to read
and keep myself informed but again certain things are beyond one’s control anyway.
There is a book that I still read; she is a hilarious writer about diabetes. She is a
superb writer and puts things in perspective and one of the things is ‘why me’ that
people usually say ‘and it is a silly thing to ask’. I never sort of think that way. I find
that the thinking to mind is quite reverse, how to cope with it, how to manage it for
instance if you are going on holiday is more important. I must remember to do that
so that I keep well and I don’t fall ill.
The other thing is getting things checked because you have so many things to check,
feet and eyes. I go to the GP who deals with the sugar level, blood pressure and
cholesterol and then he or the nurse would say have you had your feet checked then
I go to somebody else to do that, podiatrist would check your feet or then I go to the
hospital to have the retinopathy screening but it isn’t all done at the GP. You have
to be aware of these things yourself. That is where the problem comes in. I often
consider if you are not aware people go along quite merrily. They should have their
feet checked. I was introduced to Hotter shoes. They make their own shoes and to be
honest I swear by them. I only got another pair yesterday. I was able to wear them
without any pinching and I am going to have to send for another pair.
I also have sciatica so I am not really so active like I used to be. Sciatica has
nothing to do with diabetes. It is just a coincidence that I have it and because of that
I can’t walk, bend, turn or haven’t been able to do anything for the past eight years.
It is only the last two weeks that I went to see a physiotherapist who gave me some
exercises but he said that there is nothing we can do. We can’t cure it but we can
lessen the symptoms of pain. The pain is excruciating and because of that it limits
how much walking I do.
I said to the physiotherapist that I walked home from church the Sunday before last.
I hadn’t done that for almost three years. I was waiting for the bus and got fed up
and thought I am going to try this so I told him I have done something I haven’t
done for ages and he said ‘what is that’ and I said ‘I walked from church to home’.
He said ‘how long was it’? I said about fifteen minutes and he was so pleased with
himself. I think that has to do with confidence because there was somebody there
giving me the exercises and then I was able to have that confidence to walk.
I can’t relate to life in Guyana with diabetes. I was happy in Guyana when I was
growing up. I enjoyed a free life but it wasn’t a life of luxury. I come from Essequibo
and I went to school there. Life in the Essequibo was nothing like Georgetown. It
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was a quieter life. I grew up in the Methodist church, went to a Methodist school
and still go to a Methodist church.
My husband came to England first and then I joined him when I was 23. He was
doing his degree. Most of my adult life has been in England. I was teaching and
ended up being in charge of English and then head of department. That was too
much work. I had enough and then Ofsted. I enjoyed teaching until the last few years
when we had the changes. The school was just down the road so I stayed there all
those years because it was convenient for Colin and Billy Jean to go to school to get
their education. My husband went to Nigeria and at that time they were expanding
the education system. He came back when Colin was about to do his ‘O’ levels as he
felt he needed his father.
What can I contribute to the group really or say that they have not done already. I
might learn something from them. I don’t know. They say diabetes changes. When
you are first diagnosed it is one thing but ten years or twenty years later it could be
managed quite differently. It is the same condition isn’t it? You are aiming for the
same result - to keep the sugar level down.
Ongoing dialogue and reflections
Shirley spoke at length about life in Guyana, coping with diabetes, work and the
service received from the GP. She is an articulate middle class woman with two
adult children, a son living with her and a daughter with her own flat. Shirley was
head of department at a local school before she retired. During her interview she
disclosed a significant amount of personal information regarding the relationship
with the husband she divorced.
When I explained about involvement in the PAR group, Shirley expressed
reluctance because she had many hospital appointments and helped with another
group, genuinely feeling she could not contribute much. I left it as an option and
explained the transcript will arrive by post for her comments. We agreed for me to
contact her in a few days.
During a long telephone conversation, she felt her transcript was a true record of the
interview. I followed up with her storyline on the phone in which she showed
strengths in managing her condition ensuring regular check-ups at the GP and
accepted her responsibility to get them. Before diagnosis her eating was erratic but
has a regular diet now. Shirley acquired a lot of knowledge about her condition
through literature. Religion and prayer plays a significant role in her life. Exercise
has been an issue due to her sciatica but she managed to walk regularly as a result
of a physiotherapy session.
Shirley decided she no longer wanted further telephone contact but gave permission
for her interview to be used in the inquiry.
Reflection
I felt more confident in this interview with an assertive lady leading a busy life.
Shirley responded warmly sharing a lot of personal information. I asked more
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exploratory questions which elicited more expansive answers. It was clear she was
managing her diabetes. When telling her about the PAR group she became hesitant
and responded saying “she is busy and had many hospital appointments”. I did not
put any pressure on her respecting her right to refuse and brought the meeting to a
close by encouraging her to ask any further questions.
Rather than spending time encouraging Shirley to attend the group, I maintained
contact until it was clear she was not interested and decided to walk away. It was a
reminder that not everyone is interested in joining certain groups even with the
same cultural background. I have had to reassess assumptions made during this
inquiry but my experience with Jane prepared me to walk away sooner.
Agnes’s storyline
About three years ago I was diagnosed with diabetes. I noticed that I had a problem
when I got up in the morning. I would feel dizzy and have blurred vision so I decided
to make an appointment with the GP. I then had a fasting blood sugar test and the
result came back that I was 7.9 which is .9 over the required level. I was prescribed
Metformin and asked to attend diabetic classes. A dietician ran these classes for a
number of individuals with Type 2 Diabetes and we were introduced to certain diets
and were told about the amount of food we should eat, stay away from certain juices
and eat far less carbohydrates but more greens. We were informed that we could eat
sweets in small quantities but that we needed to take regular exercise every day like
walking, and that type of thing. They gave me some leaflets and little books to read.
These were like case studies that I read immediately when they gave them to me but
I haven’t read them recently.
I have been going regularly to the clinic, where they test my blood sugar to see if the
level has increased. At the GP surgery I have had a DECS which is the test for the
diabetes eye and they said that it is normal. The diabetes has not affected my sight. I
am satisfied with the help that I receive because they monitor my weight and
everything else to make sure that I am eating the right type of food. My diet varies. I
eat lettuce, broccoli, wholemeal bread and fish. I now eat less fried fish, rotis, oily
food and brown rice. I have also started eating smaller quantities and have lost
weight as well. I manage my diabetes carefully and make sure that it is controlled.
Consequently I don’t have the dizziness as before, and I’m less lethargic.
Actually I am one of those individuals that is scared of blood so I don’t like testing
my blood glucose levels. My son is a Type 1Diabetic. He got it very young and it
was suggested that stress probably caused his condition because he was going to
university and was finishing off his Masters and thesis. He helps me with the
monitoring of my diabetes because he uses a monitor. He does it for me. I actually
monitor my levels twice a week. The last test was 8. It can go down to 6 but then it
was 7. It is now 8 again maybe. In February, my identical twin sister was diagnosed
as a diabetic. She lives in America. She couldn’t understand how I was diagnosed,
and my niece who’s a nurse says ‘oh it’s in Guyana; it’s higher than over here and
perhaps they hadn’t checked me properly’. I explained to my sister that as we are
identical twins if I have it she too would be diagnosed with Type 2. My husband who
was overweight also had Type 2. It was a shock to know that all three of us got it.
I must tell you about a lady who said when she was diagnosed, she cried. I said to
her ‘look I was shocked too’ because I was caring for my husband and son and did
not realise I was diabetic too. Therefore after I got it I decided that I had to look
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after myself. I have to be contented to live with it and just use the medication and
see how long my life will be prolonged.
My husband and son used herbal remedies to treat their diabetes. They brought
some bitter sticks from Guyana and would use it now and again. Normally I
wouldn’t use anything more than medication and water. In Guyana they sell a bark
and a lot of people use it secretly. Another friend of mine advised me to use boiled
cinnamon water which is very helpful. I tried the cinnamon water and that week the
glucose level went down, but sometimes I don’t even remember that I must drink it.
My pastor advised me to drink okra juice but I used it once. I didn’t continue, but
another person from my Church told me it helped him. I have diabetes so there’s
nothing that I can do. If I knew it can be cured, amen but that’s what I’m saying I
have got to live with it. I really don’t pay much attention to diabetes because I take
life every day as it comes. If it can’t be cured, I have to stick to my diet.
The first time I heard about hypoglycaemic coma was when my son had one and I
think my husband, because I remember I was trying to I give him a bath and noticed
that he had collapsed so I sent for the ambulance and they gave him some glucose
but still took him to hospital. He was admitted for the day and then we brought him
home that night when it increased to 8.
Today was one of the days that … I mustn’t say depressed but it was a day like today
2nd June I brought my husband from Guyana after he was mugged while on holiday
so I had to go there to escort him back to England because he had a stroke. It all
came back to me today and I could see myself taking him in the ambulance to
hospital. He recovered from the stroke but started to get mild seizures. He was in
hospital on the Tuesday, Wednesday, Thursday and on the Friday they called me
and informed me that he was dying. He was in terrible state when I got there as he
was gasping for breath. I gave him some water and he was suddenly revived. The
nurse came in and said ‘Mrs’, I said’ yes, you’ve performed a miracle’. I said’
why’? The nurse said ‘your husband’s dying’ and I said ‘yes he just needed some
water’ and I gave him some. He lived for a further two months after we brought him
home. He just passed away.
We had a Coroner’s Inquest last month that was also pushing up my diabetes
because you didn’t know what to expect. It felt like a depression. The coroner read
out everything that happened and he said to me ’from the report that I have seen you
have been caring for your husband throughout’ and I said ‘yes sir’. ‘I’ve seen that
you cared your husband throughout his illness and you’ve done a good job’. I said’
thank you very much sir’.
The inquest brought some closure, but when I came home that afternoon after the
hearing, I almost fainted, and I said ‘oh’ and my son said ‘mum you need to go and
rest’. I came in and I went to bed and I don’t know what happened until the next
day.
When managing my diabetes, I believe that the church helps me to relax and I
always have faith that God will heal. I believe that it is God who is keeping me in
good health because I’ve had so many traumas to go through. I think that God is
around because I’ve seen it with my son and my husband who was ill for a long
time. God has kept him going, so I said if it’s God’s will that he should go, amen.
Some days I look around and find that I am on my own. Although my husband was
ill there was somebody to speak to but he is no longer here. My niece comes to stay
with me and my son visits some nights or before he goes home from work but they
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are not here during the day so I’m left alone however I’m trying to cope. I have one
grand-daughter but she doesn’t visit regularly.
I was admitted to hospital about three weeks ago. I heard them saying that I had a
problem with my heart. Afterwards they checked it and discovered the blood wasn’t
flowing to the main artery. I looked it up in the dictionary and found that it was
angina. I also had a knee operation in November because I couldn’t walk properly.
Every time I went anywhere it would just lock and I couldn’t move. Then I had my
eyes lasered in October, and all this happened just one thing after the other so they
had it on record.
I have glaucoma but no other illnesses. I go and get eye drops when I need them. I
think the day you called I had a hospital appointment, because they did the lasers,
but they said I need to change the spectacles but not until my vision worsen.
I was born in Georgetown but grew up in New Amsterdam and finished my
schooling there. I returned to Georgetown where I worked at the GBS Radio
Demerara radio station. Then I went back to New Amsterdam and worked with the
New Amsterdam Town council for a number of years. I became a politician with
(PNC) and worked with this political party for many years. I was offered a
scholarship and studied in Cuba for two years. When I returned to Guyana I was
seconded to work directly with the PNC.
I came to England in 1977 and have been here for 34 years. The reason for me
coming to England was to join my husband whom I was married to for 34 years. He
was looking for a wife and offered to marry me while I was working in Guyana. He
said ‘lady I would like to marry you’. I said ‘me’. I said ‘look please leave me
alone’. He said ‘yes lady I would like to marry you’. Two days later his niece
brought a certificate and when I looked at it, it was a marriage licence. I agreed to
marry him.
I used to work at the Housing Benefit office and worked there for almost 20 years. I
retired nearly four years ago. I’m 68 - 69 this year. The job was a bit stressful but it
was satisfying, because you were able to help people that were in need and that was
the main thing. I loved the people I worked with and maybe they loved me too. Some
of them they used to call me their mother. There were several nationalities working
there. When I retired many people contributed to my leaving party. They still
support me. One called me to find out what I was doing for the holidays. I say ‘I
ain’t doing nothing, I just feel like resting’. You see although they were younger
than me I respected them and they respected me. They are good friends, so I still
keep in touch and visit them in Hackney. Two months ago they invited me to lunch.
They even came to my husband’s funeral. When they heard he had died that
afternoon the house was packed. I didn’t have the space to put them.
During the day I sometimes find work to do around the house. I clean and then
wash my son’s clothes. I’m still mother washer. If I have got any minutes to look at I
will read them or I’ll call up a friend and then I will arrange meetings. Sometimes I
go out and find something to do. I don’t go to meetings as much as before because I
have given up some of my positions. I just attend my board meetings and I go to
Church regularly. I also visit friends for example the lady I told you that is very ill, I
went to see her, spend some time with her and do her shopping if it is needed. I
plant too. I always finding something to do, I say to myself that I might as well keep
busy because my husband is not there for me to care for him and I have the time.
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I don’t know now what is happening to diabetes in Guyana because they don’t have
enough information. They are not educated enough, because I remember in those
days when I lived there they use to call it sugar and they would say to you don’t eat
this, don’t eat that and you say well okay.
There was a lady in my organisation from St Lucia from the Diabetes Society and
Dr Adams plus some others formed a committee because they had the expertise.
They frequently went to Guyana to take drugs for diabetes but they stopped going
back and told us to stop contributing financially. Even with the help that they were
getting from abroad, this has been hindered because people were stealing the drugs.
Therefore the people from the committee have stopped going to Guyana. They used
to have centres in New Amsterdam and in Georgetown Hospital where people could
come and get free treatment but that has stopped now.
I would be interested in joining the group. The only thing I would like to ask you is
‘do any of the women complain that they have a problem with cramps’? This lady
that I visit is always telling me about her feet and cramps. I told her that sometimes
I get cramps too so I got heat treatment that I rub in at nights.
Ongoing dialogue and reflections
The day I arrived to interview Agnes, a pleasant, charismatic lady who received me
warmly, she commented that it was the first anniversary of her husband’s death and
was very tearful. She spoke at length about this as she missed him greatly. Her son
has Type 1 and husband had Type 2 Diabetes. Agnes believed she should have
noticed her symptoms so her diagnosis was a shock. Agnes said that she received
good care from her GP clinic, the practitioners were attentive but she needs more
information about managing diabetes. She has read about it and had an induction
course. Agnes showed self-management strengths; eating a healthy diet, taking
medication regularly, using herbs and contacting the diabetic specialist nurse with
any problems. When I talked about the group Agnes was attracted to the idea of
sharing information with like-minded women and believed she had much to
contribute to the sessions.
She did not suggest any changes to her transcript. Due to her spending time abroad
we had several telephone conversations rather than home visits. Agnes talked
about life in Guyana working for Prime Minister Burnham during the late 1960s and
1970s which she thoroughly enjoyed before marriage and coming to England. She
recalled positive experiences working with the council in London until retirement
three years ago. She missed her colleagues who still visit her occasionally. Agnes is
very involved with the London Guyanese community playing a key role in organising
activities. Her health suffered since her husband died and she was admitted to
hospital for an angiogram and heart related issues. She sustained a needle stick
injury which would not heal so was referred to the physiotherapist for further
treatment to encourage movement in the finger. Asthma too became a problem so
she was prescribed an inhaler.
Agnes was away in Guyana and America for several months during the inquiry to
arrange her husband’s affairs and visit her twin sister who also has diabetes. We
communicated again on her return in February 2012. She had had frequent falls
whilst abroad which her GP felt may be linked to a hearing problem affecting her
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balance. She said the diabetes was stable but the GP had increased her Metformin
and advised the same diet.
During an in depth conversation a month later Agnes highlighted more physical
problems. She was walking with a stick, has glaucoma in both eyes with no vision in
the left and an eye injury from walking into walls. She arranged to see the diabetic
specialist nurse about weight fluctuation and the GP will investigate her physical
deterioration.
Despite the complications, Agnes continues to self-manage her condition which she
states is under control, and remains active with the Guyanese community.
Reflection
During the interview and seven conversations with Agnes few questions needed to
be asked. She spoke openly about her problems and the loneliness following the
death of her husband despite a busy lifestyle. I felt more confident with the PAR
process so could reflect more. Occasionally I slipped into a counselling role when
an individual was upset but realised empathy was required to develop the
relationship.
Agnes made every effort to manage her condition in spite of her issues and
complications but needed more knowledge and information, some of which she got
from PAR group sessions and I sent her information when she could not attend. I
recommended ‘Balance’ magazine which the other women subscribed to for articles
and current information on diabetes.
Jillian’s storyline
I was diagnosed with Type 2 Diabetes in 2002 following a visit to my husband’s
brother and his wife who noticed that I was losing weight and suggested that I had
my blood sugar tested. My husband’s brother also a diabetic tested me and it was
14. He advised me to go and see my doctor so that is when it started. I saw the
doctor who sent me to the hospital and then I was put on tablets.
I didn’t know I had diabetes because I did not have the usual symptoms like being
thirsty or anything like that but I have a family history of diabetes.
Both of my parents were diabetic. My mother and then my father too got it. My
mother died from kidney failure. She used to be on insulin but my father lived to a
good old age. I think he was on insulin as well. I have a sister that is a nun who is
diabetic and my daughter was diagnosed at university when she was 23/24 and was
put immediately on insulin. She is now 40.
The diabetic nurse at Park Hospital sees me on a regular basis. She keeps a check
on my weight because I had put a lot on with the diabetes. She had therefore put me
on the Beretta injection and was quite pleased because I had lost so much weight
only having the injection once a day. However I am having it twice now when I
remember. I am not used to giving it to myself in the evening before my meal so I
have to remember that you have to have it on an almost empty stomach. I see the
consultant twice a year that checks my foot, soles of my feet, reflexes and toes. Two
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weeks before I see him I have blood tests taken at the hospital. They keep quite a
good check on me.
I take two Metformin tablets in the morning, two in the evening and one Glimepiride
in the morning. I monitor my diabetes closely by taking my blood sugar about once
a week, sometimes twice a week. It is normally 6.-something or 7.-something. I
watch what I eat for example, I eat a lot of fruit after breakfast in the morning, at 1
o’clock and more fruit by 4 o’clock. I have porridge at least twice a week. If I don’t
have porridge I have two slices of bread or toast.
When I am hungry I have my meal but I have it much earlier than I used to. I find
that I sleep better. My diet consists partly of Guyanese foods. I don’t cook every day.
I just eat what I feel like, chicken, meat balls or soup. Sometimes I would have a
jacket potato with tuna and salad and I would do spaghetti bolognaise every other
week. I love my rice. I would either cook a casserole or roast a chicken. If I don’t
feel like cooking, I drink soup. A Guyanese dish of cook up rice with black eye peas
or with split peas or just cabbage and curries are some of my favourite dishes that I
eat. Oh gosh I love plantains either ripe ones sometimes fried or green ones. What I
also love is egg-plant but I find that any time I eat egg-plant I get pain so I tend to
avoid it. I eat a fair amount of spinach and salad.
I get the Balance magazine once a month and get in touch with them if I need to. I
support the magazine by selling raffle tickets.
I was born and grew up in Georgetown. I went to St Rose’s, Convent school and life
was wonderful in Guyana in those days. I met my husband when I was at the
Government treasury department and I then worked at a bank. However I had to
resign after the birth of my first child as it was the bank policy. I worked at another
company prior to coming to England in 1964.
We arrived in November and it was so cold. I just wanted to go back to Guyana. I
didn’t like it at all and of course I wasn’t working then because my boys were just
three and five so I was just a housewife. While in Guyana of course you had a
nanny. Then I got chilblains during our first Christmas in England. It was
horrendous but then we lived in a flat and I had never lived in a flat before. After
about the first six months we moved to the house and it was much better. It was just
a little cul-de-sac with 12 houses and the people were really nice. When I had the
two girls I don’t know what I would have done to be honest without the people living
in that street. They were wonderful.
When we moved into the house we needed central heating so my husband suggested
that I would have to work to help him pay for the central heating. He worked for the
Guyana High Commission as a diplomat. I went to an agency and did temping and
worked as a secretary and then in the warehouse for a large department store.
We had to return to Guyana in 1971 as my husband became chief of protocol. He
was considered to be the pathway to the foreign minister and prime minister. Maybe
that is when I developed diabetes with all the eating and partying and all the
entertaining that we had to do. I don’t know how to explain what life was like in
1971. It was ok. I got a fabulous job with the UN which was tax free. It was the UN
branch of agriculture. Eventually I became like the office manager and did all the
salaries. To be honest I think I earned more than my husband because my job was
tax free with bonuses. I used to pay my servants including a cook, maid, gardener
and an old lady who used to come in to wash and iron the clothes.
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I needed the staff because I still had the children as the girls were then 8 and 9. The
boys did their ‘O’ levels in Guyana. One of the girls was born with a hole in her
heart so she had to be seen every other year at Great Ormond street so once when
we returned to England, I think this was about 1977/78, my husband said ‘we are
not taking the boys back to Guyana’ because at that time the Prime Minister
Burnham was taking especially the middle class children out of school and sending
them to work in the interior. My husband said ‘the boys are not coming back with
us’. So I said ‘are we going to leave them alone here’? Mark at this stage was about
16 or 17 just doing his A levels so he said ‘yes’ let them get Saturday jobs. We
owned the house so he said ‘let them work and feed themselves’. I was
flabbergasted. I didn’t want to leave my children here in England. Anyway Gladys
my neighbour who was like my English sister and Marie who both lived nearby said
‘you must not worry, we are going to look after them so they are not left on their
own’. Fortunately I was able to send money for them so that they could eat properly
and pay the bills.
We returned to England in 1981, sold that house and bought a bigger one. Then they
were on their own again as they were old enough to be left when we were posted to
the Solomon Islands and Fiji. Anyhow when my husband was posted to the Bahamas
I couldn’t go with him. I only spent two weeks of his posting there. One of my
daughters wanted to go to university so I had to be here with them.
We came back permanently in 1985 and I have been here ever since. I had a
fabulous job as PA to a financial controller. After I was made redundant I really
didn’t want to work anymore but my husband started to buy the local papers to look
for a job so I started to work again. I worked for a small manufacturing company
for the hair dressing and beauty trade. I continued studying and did a course in
reflexology. Well that was brilliant because I was then 60 so I paid the barest
minimum for the course. My husband stopped going out so I used to earn good
babysitting money.
So with all my reflexology and babysitting money I saved and used to spend on my
catalogue clothes and so forth. Almost every year I went to Canada on holiday to
visit my two brothers and two sisters and to Barbados to see my sister and cousins.
From the age of 50 my husband and I had a number of personal problems as he was
impotent and refused to seek treatment. You know I can’t explain it but we lived
more like brother and sister instead of husband and wife.
I didn’t realise he was having dementia. He wasn’t taking an interest like he used to
and controlling our account so I should have suspected that something was wrong.
When I went to the supermarket I used to take cash back. That was how I used to get
back my money. Sad isn’t it but that is how I coped.
From the beginning when I got married he controlled my wages. He would put it
down on paper and budget it so it was always like that. He sussed me out.
Everybody especially my children used to say mom ‘dad has money’ but at the end
he didn’t have any money. I knew what he did with his money. He used to buy silver
and antiques. He also paid off the mortgage. I don’t know if he had a lady. I feel if
you have a lady love, you would have to spend money on that woman and he wasn’t
the type to be free with his money. There are not many women that would accept a
love affair without money.
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When he went to the Solomon Islands, I had to buy another house because the
previous one had become too small for the family. I had a friend who was much
older than me but I loved her. She said Jillian whatever you want to do in this house
you should do it because when your husband returns he is going to say you can’t
have this and that. She knew him very well.
It knocked the confidence out of me for instance I was always doing a course
because I went to night classes and I did lamp shade covering and cake decorating.
He never said I did a good job or shows any appreciation for what I did. After a
time I didn’t bother with him. He was trying to keep me under his thumb.
We were married for 51 years when he died. After the children grew up I thought I
could leave but then I thought ‘what the hell’ I did so much to make this marriage.
Why should I give up now when I could go on my holidays?
Before I was made redundant from my last job I had a very responsible position and
my husband was making it difficult for me to sleep. He said ‘would you mind if I
went and slept in the TV room. I said ‘no I wouldn’t mind’. From then on he slept in
the TV room on the sofa and he was very happy. When I got my redundancy money
from my last job, I bought a very expensive bed because of my back and he wasn’t
sleeping with me anyway. I have it here now in this flat.
When he became ill I used to give him his insulin because he had diabetes too. They
found out he had diabetes when he was posted to the Bahamas. He managed it well
until he got the dementia. I had to put him in a home not too far away from here so I
could visit regularly. I could not manage him at home and he seemed to be happy
there. The children visited him regularly too. My husband passed away in February
this year.
I am enjoying life now. I don’t want another man honestly as I can come and go as I
like, do what I like, spend what I like. I know how much I have to spend so I live
within my means.
Ongoing dialogue and reflections
Jillian was keen to talk about her life even before I turned on the recorder so I did
not need to ask any questions. In her home setting this middle class lady wanted to
share her innermost thoughts and experiences with me, developing a trusting
relationship from our initial meeting. Jillian lived a diplomatic life for several years,
some in Guyana but mainly in England. When her husband travelled alone to
assignments she mostly remained in England with their four children, twin girls and
two boys who keep in regular contact with her
Jillian married in 1961 in Guyana but after the first year realised her husband
wanted to control her which resulted in a very turbulent relationship causing a lot of
stress for her. She remained married for fifty one years because of the time and
money she had invested in it. Her husband died from Alzheimer’s disease in
February 2011.
Jillian’s diabetes was discovered by chance as she did not notice any symptoms.
Although husband, daughter, sister and parents had it she was surprised to be
diagnosed. She keeps to a diet, takes prescribed medication regularly, Beretta to
help lose weight and has regular check-ups at the hospital diabetic clinic. She
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showed strengths in taking control, managing the condition and in later months
keeping up to date by reading the Balance magazine. In the follow-up phone
conversation she felt the transcript was a true reflection of what was discussed so I
then sent her the long story.
During four visits she talked more about the diabetes and on the anniversary of her
husband‘s death shared her feelings that she missed him. Jillian felt sad after being
together for so many years. The children were very supportive and choral singing
served as a distraction for her. She continued to lose weight.
The hospital diabetic service referred Jillian back to the GP in March 2012 which
she accepted but admitted that she has had to learn to live with diabetes. During a
body massage and Reiki the complementary therapists noticed problems with her
chest. She was referred to the hospital and told she had a slight heart murmur but
the X-ray was clear.
Jillian also had problems with an ankle, causing severe pain which the consultant
diagnosed as an inflamed tendon. It has been suggested she should use a stick for
balance and a boot is being made to support her foot.
Reflection
On reflection the interview was carried out in a small dining room on a very hot day
with the window closed against traffic noise, but the stuffy environment did not affect
the interaction. I could have suggested that we moved to the lounge but I was so
surprised in the way she opened up to me, did not want to disturb the positive
dialogue that had been created. She seemed desperate to talk therefore I just
encouraged her and listened. I felt very comfortable and at ease with this woman in
this setting and it was one of my better interviews even though it focused more on
relationships than diabetes. She talked extensively about her life in Guyana and
early life in England, with gaps filled at a later date. Jillian was keen to join the PAR
group and host the sessions.
Constructs
As discussed in Chapter 5, eight women were interviewed, talked about their
experiences of living with Type 2 Diabetes and the impact the condition has had on
their individual lives, earlier memories of life in Guyana and when they migrated to
the UK. The stories were analysed and I then compiled a list of all significant
statements from each of them and wrote up the commonalities between these
participants’ long stories as constructs. In other research clustered text,
commonalities or constructs might be called ‘findings’. For the purpose of the inquiry
I will use the term ‘constructs’.
Thirteen constructs were derived from the one to one interviews (see Appendix 10.
for full analysis). These were:

Diagnosis – the women conveyed various experiences in receiving a
diagnosis with three of them experiencing delay even with a family history
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
Symptoms of Type 2 Diabetes – nearly all of them were experiencing
symptoms such as dizziness and drinking copious amounts of fluid except
Jillian and were aware of them but the presenting symptoms were largely
unrecognised by their GP

Family History – nearly all of them had relatives including parents and
siblings with diabetes

Gathering information – there was a lack of clarity regarding the information
sought or obtained as some of the women appeared to be misinformed

Self-management – focused on self-management of diabetes including the
use of alternative therapies

Expected lifestyle changes – the women were learning to live with diabetes
and lifestyle changes meant a readiness to disengage from old habits

Complications – all the women were experiencing complications possibly as
a result of hypoglycaemic episodes

Religion/faith – played a key role in helping the women cope with diabetes

Depressed/low – they all experienced changes in mood as they considered
diabetes to be an incurable condition

Stress and diabetes – the women believed stress influenced their diabetic
state

Being Guyanese – they all talked about their previous lives in Guyana in
glowing terms

Preoccupation with food – they loved to eat and loved their traditional food

Maintaining contact with the Diaspora was a survival strategy
Diagnosis
The first construct derived from the interviews is diagnosis. Vera, Marjorie and
Shirley experienced a delay in diagnosis as their symptoms were ignored by the
doctors. Marjorie “thought she had this thing” because she was drinking two litres of
cola in half a day but failed to obtain a correct diagnosis despite making several
visits to her GP. She said “I went to the doctor and informed him that I was pretty
certain I am diabetic but the doctor thought I was a hypochondriac”. He said “no
you are not even though I had been going there every month”. This could be
perceived as negligent practice as both Marjorie and Vera waited six months and
eighteen months respectively before they were diagnosed. Evidence suggests that
even though diabetes management in primary care has improved in more recent
years, there is still variability in standards, “an estimated 14 percent of the number
of individuals with diabetes in England remains undiagnosed” (Goodwin et al.
2010:53)
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Marjorie and Agnes experienced shock when they received the news that they had
diabetes and the devastating effect receiving bad news can have on an individual is
captured in this quote from Marjorie. She said “I came out of the clinic screaming
and crying because the two things I would never want to have is diabetes and AIDS”
but realized that “you learn to live with it”. Agnes reacted with resignation to living
with the condition although initially shocked by the news even though she had cared
for her son and husband with diabetes. Jane, Agnes and Bea, whose family
members had the condition, were prepared to some extent as they regularly
checked with their doctors to enquire if they had the condition and were trying to
manage their diet and weight. Diabetes UK (2009) sums up the mixture of feelings
that an individual can display when given a diagnosis, shock and anger can occur
but some may not show any reactions at all.
Delay in diagnosis was not therefore uncommon among the women. It seemed their
voices were not heard. Shirley said “unfortunately doctors are blinkered”. In
contrast, Agnes, who was recently diagnosed, experienced very good follow up
care.
Symptoms
It is expected that an individual with diabetes will present with certain symptoms for
example, dizziness, blurred vision, drinking copious amounts of fluid and feeling
tired prior to diagnosis. In this second construct, nearly all the women experienced
these similar diabetic symptoms but Vera’s were quite severe as she was ‘drinking
everything’ and she had put on half a stone which was contrary to Bea and Agnes
who were losing weight. Marjorie experienced similar ones which were treated
lightly. It was only when she nearly went blind that some action was taken by her
doctor to treat her condition.
Bea noted feeling dizzy after work and attributed the symptoms to her exhausting
work schedule as a midwife which her doctor failed to recognise. Jane said she had
no symptoms but in her interview highlighted the night sweats. Following a
consultation with her doctor, she discovered that she was experiencing
hypoglycaemia which evidence (MacArthur & Gibson 2012) suggests is a serious
and life threatening complication that occurs when the blood glucose levels drop
very low.
Shirley attributed not feeling ‘right’ to her job and only after consulting her doctor
several times was informed ‘we have a result now’. Agnes noticed feeling dizzy with
blurred vision when walking but unlike the others claimed her doctor investigated
immediately. Jillian mentioned that she had no symptoms but when describing her
loss of weight to a family member with diabetes was advised to see her doctor
immediately. She seemed unaware about what was happening to her. This
construct raises serious concerns regarding two issues.

Firstly some genuinely recognized that something was wrong but could not
get a proper diagnosis from health care practitioners.

Secondly those with symptoms failed to recognize there was a problem.
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The discussion around this construct will be further developed in Chapter 8.
Family history
Shock accompanied the diagnosis yet most should not have been surprised as they
had a significant predisposition to the condition with various family members
diagnosed with diabetes (Talmud et al. 2010). Family history became the third
construct. On reflection Vera realized that her father and cousins may have had
diabetes but never admitted it. Her father referred to it as ‘a touch of sugar’. She felt
she was probably prone to diabetes from an early age as she had hives known as
‘mad blood’, a term used by Guyanese when eating anything sweet.
Bea claimed she came from a diabetic family, paternal grandmother, father, uncle
and her father’s niece. Jane’s father and grandparents died from the condition and
when the GP diagnosed her as borderline she attended exercise classes and tea
dances to keep fit. Pam’s five sisters have diabetes and mother and grandmother
died from it. Agnes could not recall a family history of the condition except for her
son with Type 1 Diabetes, her husband developing Type 2 Diabetes in later years
and a twin sister who now has it. Jillian’s husband, parents, sister and daughter
have diabetes. The evidence indicates a genetic component linked to Type 2
Diabetes. This evidence will be explored in the discussion Chapter 8.
Gathering information
The information the women received was lacking in clarity and was not considered
to be of a culturally acceptable standard. Gathering information therefore became
the fourth construct. Only one woman attended the local health service diabetic
education classes. Others searched the internet and talked about alternative
therapies. Shirley said: “sweet things do not have anything to do with diabetes, it is
another myth”. Whilst individuals with diabetes can have some sugar this statement
is dismissive of its relevance and need for monitoring.
The women sought information from various sources which did not assist them in
obtaining all they required. Even though Vera, Jane, Shirley and Jillian subscribed
to the Diabetes UK Balance Magazine they each used the magazine differently.
Vera found it interesting but not for information regarding her condition. She
complained she had not received any diabetic education sessions but admitted that
she tried to work things out for herself and do her own research, claiming “she
spoke to the nurse every six months”, who carried out routine monitoring. Jane said
she was too busy to read the magazine. Shirley read the letters in the magazine and
believed that doctors were blinkered and did not always consider the co-existing
complications. She claimed to make every attempt to keep informed via her scientist
son or reading her favourite text on diabetes and believes that “certain things are
beyond one’s control”. Jillian got the magazine, initially did not read it but does now
and supports Diabetes UK through raffle ticket sales and getting in touch when she
needs to. It seemed that the women found it difficult to make the appropriate contact
with the health care system to meet their information needs.
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Marjorie compared Guyanese and English attitudes to the diabetic diet. The differing
guidance offered to individuals from both countries was raised and Marjorie
questioned the advice given to those with the condition in Guyana. Pam admitted
having lots of health books and information from the diabetic course. She talked
about the benefits of the course being instrumental in helping her to choose foods
she could eat. Bea was aware of the foods to be avoided for a balanced and healthy
diet. She identified what caused an hypoglycaemic coma when taking insulin but
had never experienced one. Acquiring knowledge and information in diabetes is
important because it helps the individual to take control of their condition through
self-management. The evidence will be discussed in Chapter 8.
Self-management – alternative therapies
Self-management, the fifth construct, focuses on complementary and alternative
therapies and taking control of diabetes. The women self-managed their diabetes
with a range of methods. Pam recounted her mother using herbal medicine to
improve her eyesight and diabetes but there is no evidence to support this except
that she saw a qualified practitioner. It is unclear what type of practitioner; however
Pam regularly takes herbal treatments which she believes make a difference to her
experience of living with diabetes.
Bea also talked about herbal preparations she used alongside insulin treatment
such as Malaysian beechnut, karela tea made from a Guyanese fruit and cinnamon.
Agnes’s husband and son regularly drank herbal remedies to treat their diabetes
and encouraged her but she is rather sceptical about them. When her pastor
suggested that she drank okra juice she only took it once. There is evidence to
support BME groups using herbal treatments alongside prescribed treatments so
this data is not new and is associated with beliefs about herbs having curative
properties or improving quality of life (Hunt et al. 2000). The evidence is discussed
in Chapter 8.
Self-management has an expectation that people will take control of their lives.
Whilst the women recognised this, there was a wide variation in ‘taking control’ and
decision making about healthy eating. Some knew what a diabetic diet should
consist of and foods to avoid. Others ensured that they had regular check-ups and
monitored their diabetes. Knowing how to navigate the services and seek support
and guidance for their condition was an issue for majority of the women.
Expected lifestyle changes
The sixth construct refers to expected life changes. The women vividly recalled that
when diagnosed they would change their lifestyle, closely watch food intake and
take regular exercise but there was variation among them in taking up these
behavioural changes. My understanding is that being able to make lifestyle changes
is dependent on readiness to change (Prochaska et al. 1994). Readiness means
disengaging from old habits and behaviours. One way to assess whether they had
changed their behaviours is to explore the lifestyle changes made. Few had an
exercise plan; only one maintained a log book and monitored glucose regularly.
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They claimed changes in their eating programme but most were still overweight.
Three used walking sticks for support as arthritis was experienced as co-morbidity.
Perhaps limited mobility is a reason why routine exercise is difficult to plan.
Complications
The seventh construct refers to complications experienced by the women, possibly
as a result of the hypoglycaemia episodes. Hypoglycaemia can be caused by
insulin, exercise, food (specifically glucose containing carbohydrates) being too
much or incorrectly timed (MacArthur & Gibson 2012). However Bea is aware that
she has Type 2 Diabetes as she said “I know it is a progressive disease but you
learn to live with the complications. It affects all your organs in your body such as
your kidneys, eyes and feet” but for some of the women their management of
diabetes is less than adequate or due to the progression of the disease.
We did not gather biomedical data so can rely only on stories told. It was concerning
that the women’s diabetes appeared advanced. The women experienced several
complications for example retinopathy which occurs as a result of persistent high
levels of glucose that can cause damage to the eyes. Neuropathy is another
complication that affects the nerves in the body leading to tingling and numbness
and cardiovascular disease or diseases of the heart. Three women had
hypertension and high cholesterol that can affect the heart. These and other
complications were also discussed in the group sessions which will be addressed in
Chapter 8.
Religion/faith
The eight construct is about the spiritual perspectives that play an important role in
the women’s lives. Religious beliefs seemed to help the women to cope with their
condition. Two women converted to Buddhism and chant when faced with stressful
situations while others attend church regularly. We should not underestimate the
power of spiritual beliefs and the effects it can have on the individual when faced
with a life threatening situation. As one woman put it “I believe you can cure
anything because I’m a Buddhist and we have a great faith that the body can heal
itself”. Bea who is a Buddhist believes faith helps her “to come to terms with my
diabetes”. Shirley: “prays” when she needs to and finds it a great comfort. Agnes
believes that “the church and God is keeping her in good health”. This construct is
discussed further in Chapter 8.
Depression/feeling low
As discussed, my background as a Mental Health Nurse meant I was finely tuned to
psychological disturbances. The women often described themselves as feeling
depressed or experiencing changes in mood that they attributed to living with
diabetes as an incurable chronic condition. This was construction number nine. Two
expressed sometimes feeling low about their diabetes rather than having a full
blown depression particularly when they felt they were self-managing but their
glucose levels remained high. Shirley experienced “quite a low unexplained feeling”
135
but did not identify it as depression. Agnes admitted that she was not depressed but
feeling lonely because she was missing her husband who had recently died. Jillian
expressed feelings of sadness and loss for her husband who died in a care home
but was still coming to terms with the loss. Depression emerged again in the group
sessions as the women explored their feelings in more depth. The evidence is
discussed in Chapter 8.
Stress and diabetes
In the tenth construct, speculation about the cause of diabetes was rife with most
women agreeing stress was a strong precursor. Vera, Bea, Marjorie and Shirley
wondered if stress had caused their diabetes. They recalled stressful episodes in
their lives and made connections with the appearance of symptoms. They
commented on whether stress associated with their jobs was a trigger. Bea was
pleased when asked to retire as being a midwife was challenging. She
acknowledged that “stress can have an effect on you” as she found “midwifery very
stressful because it is not one life, you have to think about but two: the baby and the
mother”. Bea made a serious attempt to lead a healthy life but still developed
diabetes. She felt “stress may be one of the triggers for her diabetes in combination
with my genes”. The association of stress with diabetes warrants further
investigation in Chapter 8.
Guyana
It is not unusual for migrants to talk about the country they left years ago in glowing
terms. All the women gave glowing accounts of ‘back home’. Their lives changed
dramatically when they left the tropical warmth of Guyana for England. As middle
class women they led privileged lives and being Guyanese was important to them.
This was number eleven in terms of constructs. Most experienced a reversal of
class and for the first time being referred to as women from a BME community. As
one women said “one notice on the door said coloured people and dogs were not
welcome”. Some of the women faced discrimination when they came to the UK
which they did not expect and the standard of living changed significantly for some.
Jillian sums this up in her quote. She said “we arrived in November and it was cold
… then I got chilblains. It was horrendous but then I lived in a flat and I had never
lived in a flat before”. Given the circumstances, it would be easy to understand them
seeking comfort in each other’s company and enjoying traditional comfort food rich
in carbohydrates and fat. Many transitions have been made with migration being
one of the biggest, but coming to terms with diabetes and learning to self-manage
their condition involved lifestyle changes. In our opinion this was achieved with
limited success and I postulate that resistance to a complete change in lifestyle was
cultural.
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Preoccupation with food
The twelfth construct is the women’s preoccupation with food. Most of the stories
told were about food and their relationship with Guyanese food. All the women
talked about traditional foods and although they claimed moderation in quantity and
frequency food was foremost in their minds. Lifestyle and diet changes represented
a big challenge. Shirley admits that she has lost the taste for a “proper Guyanese
diet but sticks to cassava, plantain and rice”. Bea found that she cannot “eat too
much rice because that really increases my blood sugar level”. Marjorie had made a
lot of changes to her diet, she said “now I eat greens and proper portions, the other
Guyanese foods I eat are black pudding, pepper pot, garlic pork, ‘metemgee’ and
‘chow mein’ but that is healthy because it is vegetables and noodles”. Pam
preferred “a lot of leafy green vegetables and water based fruit because that is what
the body needs”. Jillian loved “a Guyanese dish of cook up rice with black eye peas
or with split peas and curries are some of my favourite dishes”. The Guyanese diet
is discussed in Chapter 2.
Maintaining contact with the Diaspora
The thirteenth construct refers to the women maintaining contact with the diaspora
as a survival strategy. The majority joined the PAR group because other Guyanese
women would attend. However there is some inconsistency with this viewpoint
because two women chose not to attend even though they knew like-minded
Guyanese women would be present. Marjorie said “as Guyanese living in England
we tend to stick together”. They have a profound loyalty and travel long distances to
be with each other and maintain contact with Guyanese in Canada, USA and
Guyana. One said “I have a lot of support from Guyanese friends whom I talk to
regularly”. Jane admitted that she is “a very active person in the Guyanese
community and supports the Guyanese High Commission”.
Conclusion
The focus of this chapter has been on one to one storytelling interviews. The
women were given opportunities to tell their story within a safe environment in their
own home. I achieved my aim in this inquiry as I listened to the women’s voices and
privileged their storytelling.
The women’s stories were analysed and constructs identified for similar
commonalities in experience but with a measure of difference in how they learned to
live with diabetes. Thirteen constructs were derived from the one to one interviews.
From these constructs I felt that the key issues emerging from the women’s stories
included how they felt powerless when they tried to obtain a confirmed diagnosis of
their diabetes; it seemed their voices were not heard. As majority of the women had
either parents or siblings with diabetes, the evidence within the literature review
suggests a genetic disposition towards developing the condition. Other lifestyle
factors such as age, being overweight and lack of exercise may also cause an
increased risk.
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Although the women exhibited the symptoms of depression and stress, these
problems were largely unrecognised by their GPs among this BME community.
They demonstrated a thirst for information yet what they gathered from different
sources failed to meet their needs. There were noticeable gaps in their knowledge
and understanding of their condition relating to diet and lifestyle and when selfmanaging their diabetes, the women did not rely on the biomedical model of
treatment. Instead they used CAM with their prescribed medication.
A more empowered and collaborative approach of diabetes education, sensitive to
the individual’s needs seems to be required as these women from this BME
community under-utilised various models of self-management such as the “Expert
Patient” and DESMOND. Coming to terms with diabetes still remained a significant
issue for them as they learn how to live with this long-term condition.
See Table 3 (p138) that summarises the interview constructs and corresponding
exemplar quotes from the participants in the inquiry.
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Table 3: Interview constructs and exemplar quotes
Key Constructs
Exemplar quotes
Diagnosis
“I went to the doctor and informed him that I am pretty certain I am a diabetic but the
doctor thought I was a hypochondriac. Following the initial shock of being diagnosed
with diabetes you learn to live with it”. (Marjorie)
Symptoms of Type 2 Diabetes
“One of the first symptoms experienced was when I came home from work I would feel
a bit dizzy. I didn’t know what was wrong and started to lose weight”. (Bea)
Family history
“Both of my parents were diabetic. My mother died from kidney failure. I have a sister
who is diabetic and my daughter was diagnosed at university”. (Jillian)
Getting information
“One of the best things I attended was my six week diabetic course because they gave
me a book and the course was really instrumental in helping me to identify the foods I
could eat”. (Pam)
Self-management
Expected lifestyle changes
Complications
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I went on insulin in 1999 at my instigation. I kept having the tablets combined with the
diet but these were not working satisfactorily, the condition was becoming more chronic.
I told them I needed to go on insulin. They gave in. Again you have to be your own
doctor”. (Vera)
“Over the years your lifestyle changes so you have to change with it. A similar thing
occurs when you have diabetes you have to change with it”. (Marjorie)
If I didn’t eat the glucose levels dropped very low so I had to eat something if not I would
get a hypoglycaemic coma and that is not very nice”. (Shirley)
139
Religion/faith
“When managing my diabetes, I believe that the church helps me to relax and I always
have faith that God will heal. I believe that it is God who is keeping me in good health”.
(Agnes)
Depressed/feeling low
“Quite a low unexplained feeling”. (Shirley)
Stress and Diabetes
“I believe stress can have an effect on you. I think that stress may be one of the triggers
for diabetes”. (Bea)
Being Guyanese
In England I came at the worst time when we had that fog and smog. Oh it was horrible.
It was hard coming from a privileged lifestyle to a different lifestyle. I missed the sun,
sea, friends and all the privileges”. (Marjorie)
Preoccupation with food
“A Guyanese dish of cook-up rice with black eye peas or with split peas or just cabbage
and curries are some of my favourite dishes that I eat. Oh gosh I love plantains either
ripe ones sometimes fried or green ones”. (Jillian)
Maintaining contact with the Diaspora
“I am an active person in the Guyanese community and support the Guyanese High
Commission”. (Jane)
In the next chapter I will discuss phase two of the inquiry which is focused on researching alongside the participants in the group guided by
the principles of ‘looking, thinking and acting as an iterative process.
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Chapter 7
Participatory Action Research Groups
140
141
Koch and Kralik’s (2006) participatory action research framework describes ‘look,
think and act’ as a systematic and analytical approach for the group process.
Participants set the agenda, initiate and determine the salient questions, co-create
the findings, determine voice and decide on the actions they wish to take and how
reforms will be communicated.
This chapter describes the group process or phase two of this inquiry. I write about
PAR as it takes place in collaboration with the participants. I show how they
determined what should go on the agenda and the way in which they drove the
research and decided on the actions. I followed the cyclical processes of ‘looking,
thinking, and acting’ as an iterative process. My reflections about the process are
included particularly my observations of group dynamics. All sessions were
recorded and transcribed. A description of the PAR analysis process used is
discussed in Chapter 5.
As revealed earlier, I had an apprenticeship ‘novice researcher’ phase where I met
regularly with four Guyanese women: Vera, Marjorie, Pam and Bea. When I officially
became a PhD candidate I recruited another four women. Although eight women
were part of the storytelling process and their storylines are given in the previous
chapter, only two women: Agnes and Jillian joined the PAR group sessions from this
second recruitment effort. The table below shows that we met on 14 occasions over
18 months and their attendance was variable. Note also that one of the supervisors
became part of the group on two occasions. In response to the many questions
asked by the women about medical management of diabetes a diabetes specialist
nurse was invited to join two group sessions. The sessions were held in rotation in
the participants’ homes including my own.
Table 4. Attendance at 14 PAR groups meetings
Participants
1st
2nd
3rd
4th
5th
6th
7th
8th
9th
10th
11th
12th
13th
14th
Vera
√
√
√
√
√
√
√
√
√
√
√
√
√
√
Marjorie
√
√
√
√
√
√
√
√
√
√
√
Pam
√
√
√
√
√
√
√
√
√
Bea
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
*Agnes
√
*Jillian
√
√
√
√
√
√
Ann PhD
candidate
√
Supervisor
√
Diabetes
Specialist
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
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I pondered about the best way to facilitate discussion in the group: whether to share
the 13 constructs from the one to one interviews or to start the conversation from
scratch. I decided to start from scratch precisely because I wanted the women to
take control of the group discussion and set the agenda for subsequent sessions
based on their needs. Nevertheless I kept the 13 constructs in my mind as they
were talking. I reiterate the constructs as: being diagnosed, symptoms, family
history, gathering information, self-management/alternative therapies, expected
lifestyle changes, complications, religion/faith, depression/feeling low, stress and
diabetes, being Guyanese, preoccupation with food and maintaining contact with
the diaspora.
First Session
At the first PAR group session, we sat around the table at Vera’s home (see Table 4
for attendance p141). We introduced ourselves to each other and to the supervisor.
Although the Guyanese community tend to be acquainted with each other, these
women had not met each other previously. We agreed that we would have lunch
before the discussion.
Vera who hosted the session talked about the variety of dishes she had prepared
including rice and peas, salads and chicken stew that reflected Guyanese traditional
recipes. Vera said “incidentally ladies I was looking for something that is a nice
sweet but I didn’t want to buy anything like a gateau, I have some raspberry jelly
and some melon”.
Following on from lunch the women set the agenda for the discussion. I asked them
about their expectations from the group. Pam’s expectations were to mutually
exchange information about living with diabetes. She said “I can contribute
something and others can contribute something to me”. Marjorie agreed with Pam’s
expectations but said “I think I manage mine quite well with the exception of the
times I cheat”. One of the women asked what she meant by cheating. Marjorie
confessed that she eats “things” that she should not eat; she likes to have her
“treats”. Evidence of ‘cheating’ was given by Marjorie who said:
I will own up. I had baked and I had gone to Marks and Spencer’s where I saw a
lemon Swiss role. Oh gosh it was heaven. I decided to try the lemon first, ah oh the
lemon is just exquisite and so I had eaten that, a bit of black cake but then I thought
you know what...
Despite this Marjorie claims that she “compensates by being really really good”.
Pam divulged her weakness was cashews.
Vera listened as the others spoke and then shared her story with the participants
with some new information. In this version, Vera admitted that she also cheated.
She said “I am not quite sure where I am heading at the moment”. Vera reiterated
the lack of support given to her by the health care practitioners that included her
delay in diagnosis and “mismanagement”. She warmly accepted the support
received from the Guyanese expatriates living in New York or Toronto. About the
first session, Vera said:
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It is possibly why I am at the cross roads. So having this sort of group meeting is
raised my spirits if nothing else because it has helped me to see that other people
are going through the same sort of hazardous situations at times, but also it is nice
to meet on a sort of social level. It would have been nice if we had had this sort of
meeting say 20 years ago.
There was a chorus of voices agreeing to the importance of meeting as a group.
Bea spoke about her expectations, “we can get together and discuss what to eat
and what not to eat, it will be a great help to other people out there who are going to
develop the same thing”. Bea reiterated her concerns about her family history of
diabetes and how little had been understood and done for her mother and father.
Bea spoke about her mother who remained undiagnosed until “the end” whereas
her father refused treatment because he thought it was just “a touch of sugar”.
Marjorie asked Bea how long she had been on insulin. Bea gave another version of
her story and pointed out how she had been neglected by medical staff. The women
spoke about not having a voice and one said that doctors “don’t like to be told”.
Marjorie started to tell her own story of losing her vision as she was considered to
be a hypochondriac by medical staff. Vera told the group she was still enraged by
her treatment where she was passed from one specialist to another. Eventually she
said “she was seen by a dermatologist complaining about hives. These hives
irritated her and caused her to scratch constantly”. Vera reported to the group that
this doctor looked at her “in almost disgust” and said “look you may have a few
health problems but by and large you are healthy. I just wanted to slap him at this
stage” because that was her third visit to see a private specialist.
Pam, encouraged by these revelations shared by the women, shared her own
experience. She talked at length (1723 words), repeating what she had shared in
the one-to-one interview. These included family history with diabetes, her difficult
relationship with her medical practitioners, comorbidities, arthritis and fibromyalgia.
Pam spoke about the daily routine of what she eats and reading food product labels.
Pam placed a book in the centre of the table and said ‘this book was given to her
when she attended a six week diabetic course, the Expert Patient Programme”.
She read out aloud during the session, things from the book she felt the group ought
to know. She suggested to them that they should read the book because she
believed it would inform them about insulin in response to Marjorie’s concern about
the tablets that she was taking and the function of the pancreas.
There was a rapid exchange of information among the women about insulin and
tablets. Marjorie confided “my fear is that I am going to end up taking insulin. I really
really don’t think I could deal with that”. Marjorie was surprised to hear that Vera
self-administered six to seven times every day and that she had been on insulin
since 1999. Bea who is also on insulin asked Vera if she used an insulin pen. There
was further exchange of information about Metformin and oral hypoglycaemic drugs.
Pam talked about recent research in America which she was keen to share with the
group. There was much laughter when Vera talked about a friend who had “a touch
of sugar”. “Either you are or you are not”, she said.
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Prescriptions for insulin were particularly problematic for one participant of the
group, Bea, who said:
When I got my insulin they put underneath in the prescription it should last for so
many months and I went back to the diabetic nurse and I said ‘why are you telling
me how long this should last. I am not over using or drinking it.
One participant said she liked the idea of a psychologist “who stands by your case
because you feel really bad”.
Pam claimed that diabetes could be cured and she also assured the group that
karela (bitter melon) was an alternative therapy that they should all try. The women
quizzed each other about the use of it which was drunk as a tea. Pam advocated
beetroot juice and paw paw for high blood pressure. The women said “they had tried
various herbal remedies and were keen to share these with each other”.
The women talked about hypoglycaemic attacks. One participant described her
symptoms including a severe headache and another participant echoed her
agreement and said “snap”. Pam said she:
Was walking down King’s Road and this feeling came over me, I tell you all that
goes into your mind is that you are going to die. I started to chant because as you
know I believe in the Buddhist faith. Then I remembered a sweet shop around the
corner. I went to the shop and got two bars of chocolate because one does not do it.
The women said they “carried a sweet on standby should hypoglycaemic symptoms
appear”. Marjorie raised the seriousness of hypoglycaemic coma as she recalled
how her ex-husband went into a diabetic coma several times and eventually died.
The women compared how they had all lost weight but had not recognised it as a
symptom of diabetes. For example, Marjorie said “I am not complaining but I would
still like to know why?” They revealed another misunderstanding when they did not
appear to understand the workings of the drug Metformin as they quizzed each
other about it.
Vera suggested that better information should be provided about diabetes for those
who may be at risk of getting the condition. She asked whether there is an
hereditary component which they all agreed should be an item on the agenda that
warranted further discussion by the group.
Reflections: Facilitator’s role
Following the first group session, I based my reflection on Schon’s (1983) model of
reflection: reflection in action and reflection on action that was discussed in the
previous chapter. I had facilitated groups before but this group felt different because
there were certain rules that I needed to adhere to when using PAR facilitation such
as “silence is golden and let the women take control of the meeting” (Koch 2006).
Being a talker, the effort to keep quiet required practice but I felt able to loosen
control and talk less as the inquiry advanced. I discussed my facilitator’s role with
the women and we agreed that I would be a listener. I also agreed to keep them
145
focused when they digressed. I saw my role as helping the women to reflect and
analyse their situation.
This first group session was easier to facilitate than I had anticipated because the
women interacted with each other. As discussed, I did not circulate their stories
and/or constructs prior to the meeting. Starting from scratch meant that each
woman wanted to tell her own story in the group. In this way they built relationships,
as it was a way of introducing themselves to each other, which worked extremely
well. They listened to each other and shared their experiences. They appeared to
want to be co-researchers in this project.
Following the group session, I considered whether I could have facilitated the group
differently. This was a difficult question because I was aware that I was new to this
process but realised we took too long over lunch so the actual taped session started
much later. At times the session felt very rushed. There seemed to be a lot of
content. The women later agreed that we should devote a specific amount of time
for lunch and, keep at least one hour for the more formal part of the session and to
start promptly. This became another ground rule for subsequent sessions.
Analysis of the first PAR Group session
The women established their own norms. They were assertive and keen to voice
their feelings. They also agreed their own agenda and suggested that the sessions
should be in the afternoon as travelling by public transport was easier during the
day.
Even though they had some information about each other, the women presented a
more concise version of their stories. It is recognised that stories are not always told
in the same way (Frank 1997). For example Pam talked more about her sisters who
have diabetes and the consequences of their actions in not managing their
condition. Her story had had the most gaps following the interviews. Vera covered
similar issues but new information was gained about her seeking help from five
medics including three Harley Street specialists when looking for a diagnosis. Hives
which are a precursor to diabetes was not picked up by Vera’s GP and she waited
another three and a half years before being given a diagnosis.
Pam’s voice was dominant in the group followed by Vera’s. If reference is made to
Tuckman’s (1975) group dynamics model, this is the forming stage of the process.
Pam took control of the session but the women showed a willingness to listen to
her. The need for education about their diabetes was evident as Pam used the
space to educate the women and her facts were not particularly challenged by
anyone. The information in the book seemed fairly authentic and consisted of six
documented sessions delivered by a diabetes specialist nurse. However Pam
presented some information based on her beliefs about the use of alternative
therapies when self-managing. She believed in herbal treatments and remedies that
she had been drinking or intending to eat for example, karela, a known vegetable
that is grown and eaten in Guyana. Both Pam and Bea had been drinking the tea.
However I did not judge this to be the appropriate occasion to voice my views about
146
it but thought at a later stage I would need to invite a diabetes specialist nurse to
discuss some of these views that the women held.
What really stunned me was how they gelled together immediately and talked about
similar experiences that they have encountered with respect to living in England and
in relation to their condition. It struck me that from listening to the women, they felt
comfortable with sharing their innermost feelings and certain behaviours like
cheating that meant eating foods that they felt they should avoid but felt safe to
confess to each other.
Vera’s voice was fairly dominant too as she spoke about her experiences. She has
had diabetes the longest in the group but has encountered some negative
experiences regarding the service she has received from the GP. I recorded in my
notes: was Vera asking for help from the group? Were these her expectations? Bea
was the silent member and asked very few questions but listened attentively. Bea
wanted further support from the group as she had recently commenced insulin.
It seemed as if this group felt safe enough to not only give their strong opinions but
was not afraid to challenge each other. The women offered each other many
opinions about diabetes, remedies and diets particularly food eaten in Guyana.
Although most women had been diagnosed many years ago, there was still a strong
need for information about the medical aspects of diabetes and health services
available to them. I picked up educational needs regarding their condition in this first
session, which has some similarity with the fourth construct “gathering information”.
There was a thirst for acquiring information. These questions were asked:

What was a normal glucose level?

What were the side effects of Metformin?

Can we use herbal remedies/foods alongside medical treatments?

What health services are available?
The women communicated that they believed that they had been self-managing
their condition. It was therefore surprising that these questions still needed to be
asked. It seemed that they had based their self-management on spurious
information. They did not know health service availability and they attentively
listened to one another about access to GPs and the specialist diabetes clinics.
This was evident in their interviews and reiterated in the group session. They
realised they had a knowledge deficit and asked whether they should have had a
group discussion similar to this PAR group when first diagnosed many years ago.
In other words they were pleased to have an opportunity to exchange these ideas
and experiences ‘better now than never’ in this group.
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Second Session
At the second PAR session see (Table 4 for attendance, p141), we ate lunch and
Marjorie commenced the discussion by asking about normal glucose readings. This
question had been asked at the previous group session and there appeared to be
repetition, the reason for which I was not sure. Vera’s response was helpful as she
clarified what the readings should be. Pam gave the official glucose reading from
her book that she mentioned in the previous session.
Equipment was on the agenda once more. Pam remarked again that she was
paying for her glucose sticks and discussed the service she was receiving from her
GP. I asked how often they attended the clinic. They all gave varied responses but
Marjorie remarked she attended every six months except when she had retinal
screening once a year. She expressed her fear of insulin again and asked the group
about insulin pens or patches. Marjorie also talked about her recent scare when her
reading was 11+. There was a lot of laughter at this point when Marjorie said “she
was not doing anything wrong”.
At this point, I asked them their feelings about the group? They all responded by
saying “we learn much from each other and we can give advice to others”.
Reflections: The facilitator’s role
While reflecting on this second group session, this was a more focused session on
mainly medical questions regarding the management of their condition. I had given
each woman a voice to raise her concerns. I was not a diabetes specialist nurse. My
role here was as a facilitator and researcher but these questions could not be
ignored. I realised that these questions required answers and thought about the
timing in bringing a diabetes specialist nurse to talk with the women. But this was
only the second session therefore I felt I could not introduce someone new at this
stage. We were just becoming acquainted. I needed time to understand the group
dynamics. In collaboration, I asked whether the women would like a diabetes
specialist nurse to attend but they suggested having someone later that year.
However it was important for me to keep a record of their questions. In light of the
medically focused questions raised, I recognised the need to increase my own
knowledge and understanding of diabetes. I sought relevant journal articles; I
liaised with diabetes specialists and kept within the agreed confidentiality
boundaries.
It seemed that the women liked being in the group and could see the benefits in
sharing information, giving advice and being supportive of each other. There was
much laughter throughout the session that made us feel relaxed.
Analysis of the second PAR Group session
The group was still in the early forming stages according to Tuckman’s (1975)
model. The group goes through a series of stages as relationships are formed and
later become more established. This process and its critique will be discussed in
more detail in the final section of this chapter.
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As I read more about diabetes and in particular, hypoglycaemia, I became
concerned about the complications the women were talking about and the effect
these were having on their bodies. Seeking medical attention seemed urgent, yet
when they informed their respective GPs/health care practitioners they appeared to
be ‘fobbed off’. They stated that they were unhappy about the apparent inequitable
and fragmented services. It seemed that the choice of treatment depended on the
clinic they attended and whether funding was available in their local area. Advice
was often contradictory.
Action
The women agreed to take control of their long-term condition rather than relying on
health care practitioners. Any pressing matters that arose in the group that needed
immediate answers, I suggested to the women that they should discuss them with
their GP. They were already becoming more informed and I was beginning to
become more comfortable with the PAR group process. I reflected on the learning
that was taking place for us all as we immersed ourselves in learning more about
diabetes and the PAR process.
Third Session
By the third group session we had got into a familiar routine. We ate lunch quite
quickly as only Bea, Vera and Pam attended this session at Pam’s flat. Marjorie had
been unwell following a series of investigations, so sent her apologies.
The session commenced with a discussion regarding the actions they had taken.
Vera discussed the actions she had taken prior to starting the group. She said:
I had already taken some actions which was to get away from the GP set up and to
get back to the hospital where I knew the specialists were and to get them to look at
my medication which hadn’t been looked at for eight years which is wrong and so
that is what I did and also to check on the pains that I have been getting, problems
with my leg and out of that I had my insulin changed, able to lose one injection,
down to four now rather than five a day.
As Vera spoke, we listened attentively. Vera also discussed her vitamin D deficiency
so Bea kindly reminded her that “if you have a deficiency then you only needed to
go out in the sunshine for ten minutes”.
There was a long discussion about complications as a result of diabetes, rather than
matter of fact, the women were taking these seriously. Vera and Pam talked about a
similar eye sight problem that had arisen. Vera suggested that her eye problem may
have been caused by the hair colour the hairdresser had used that got into her
eyes. She wondered if a similar thing had occurred with Pam. Both of them had
since seen their GP and there had been an appropriate response and treatment.
Bea interjected at this point and asked Vera how many cataracts had been
removed. Vera informed her that she had them removed in both eyes but also had
laser treatment which had been effective. This led to a discussion about lasering
eyes and what was involved in this procedure. Bea expressed some concern and
149
apprehension about having hers done. Pam reassured her but suggested that it
needed a specialist to do this type of procedure. She informed them where she had
hers done and suggested:
As diabetics it is best to have it done. Get rid of the cataracts especially if you have
diabetes.
Bea was interested in obtaining information from Vera about lasering.
Bea changed the topic and talked about the service that she was receiving from the
GP. Bea said:
There is a nice diabetic nurse that looks after me. I think she is doing a good job. I
don’t mind staying with them but every time I say can I go to the hospital, they say
oh no, we can do it right here.
Vera asked Bea if the nurse at the surgery had the appropriate qualification to
prescribe insulin. She explained her diabetic nurse could not prescribe insulin. Vera
captures the feeling at this point in the conversation about being assertive, she
stated: “you have to stand up for yourself and insist otherwise they will just assume
that everything is fine”.
Reflections: Facilitator’s role
The dissatisfaction with the service that women had received to date was still
present and the perceived failure of the practitioners to meet their needs was still
obvious and discussed in some detail during the session. Information was
exchanged but often I was not sure about its quality. I would need to read more
about diabetes and service provision.
In terms of the group dynamics, Vera was dominant and held the floor for much
longer than Pam who said very little. Vera was knowledgeable about diabetic eye
conditions which she was willing to share with the others. She had been extremely
knowledgeable throughout the sessions so far and had played a significant role in
answering the women’s questions. I encouraged Bea to have a voice as she tended
to be a quieter member in the group. The women were beginning to establish
relationships outside of the sessions. There was reciprocity among them.
Actions
Inconsistencies in treatment advice were a concern. Women declared that they felt
they had not been given a choice of service or treatment. Vera and Pam decided to
explore their concerns further with their GPs. The women expressed individual
actions they wanted to take before we met again. These included Vera continuing to
manage her diabetes and take vitamin D tablets as she was experiencing a
deficiency. Bea wanted to be referred to the hospital for a follow up appointment
regarding her sight problems that had reoccurred despite her cataracts being
removed. She was going to be assertive and pursue this line of treatment. Pam
needed her cataracts removed but was going to have a further discussion with the
150
ophthalmologist. Becoming more assertive was the key to getting your needs met
when you have diabetes and the women agreed they needed to develop this skill.
Fourth Session
This session was held at Marjorie’s home (See Table 4 for those who attended,
p141). Pam commenced the session by talking about a visit she had made to the
diabetes specialist nurse, ophthalmologist and the podiatrist. This is what she had
to say. Pam asked the nurse for a diabetic menu instead she received sheets of
paper to write down her own daily food intake. She claimed this was not what she
had expected and later informed the dietician. Although she felt reassured by the
dietician that she was managing the condition, Pam expressed her worries about
her diabetes and admitted that she was eating the wrong type of foods. She said:
I am still worried. My diabetes is high for me and I keep checking it. I think I am so
depressed with the eyes that hit me so because I don’t know what is causing it. I am
not happy with the state of my blood. I think it gets me depressed and I eat more or
eat things that I shouldn’t eat. I don’t have good health and so I might as well eat
the things I like.
Holding the floor, Pam continued to tell women how she felt about her diabetes and
the problem with her eyesight. In support, Vera admitted that she too was going
through a similar sort of phase. She said:
It doesn’t seem to matter what I eat or not eat as the case maybe my sugar levels
are high and I thought maybe the new insulin, it is just settling in but I am just doing
my own thing at the moment and I am not feeling confident that the treatment is
actually working but then again while I am not getting a lot of exercise because of
the pain in my back and leg, it becomes a vicious circle.
Marjorie intercepted at this point and talked about the problems she had had since
November which included swine flu. She discussed other chronic problems; Crohn’s
disease, colitis and/or irritable bowel syndrome. Marjorie claimed she had not
received a firm diagnosis. These issues according to her were more important than
blood glucose levels as she had lost an incredible amount of weight yet the chronic
colon problems remained undiagnosed. The women responded with words of
encouragement. Pam eased the tension by recalling a cheerful story of a friend who
managed her diabetes effectively and kept the blood glucose levels down to six.
She also talked about her mother who lived for thirty years with diabetes but that
she had not used insulin.
We again discussed their negative perception of treatments and health services.
We then changed direction and talked about things that were going well including
their strengths in managing their condition despite not feeling supported by the
health care providers.
Action
The conversation switched to the actions that the women could take for the next few
weeks, as the session was coming to an end. They discussed their planned
151
personal actions that included taking more exercise, managing blood glucose levels
and sticking to a healthy diet. The women congratulated Marjorie on the progress
she had shown since attending the PAR group especially the change in her diet.
Vera talked about the effort she had made to attend the session at Marjorie’s house.
She had ‘got out of the habit of going out and had got lazy’. She shared her grief in
losing her travelling companions: her mother, her sister and her aunt had all died
recently. She stated that she was pleased that she had made the effort and was
able to contribute.
Understanding food preferences, Vera suggested that the group could develop a
menu book for Guyanese people diagnosed with diabetes. It was agreed that the
women wanted to introduce an element of choice to the rather bland diets and felt
that this was one way ‘we’ could do it. Vera would bring information about menus to
the next session.
Reflections: Facilitator’s role
I had completed the research process apprenticeship of this inquiry and had
formally become a PhD candidate. I had recruited four more Guyanese women, and
after the one to one interviews were completed and the new recruits had received
their validated accounts, I then asked the four women in the existing PAR group
whether we could expand. Vera, Marjorie, Pam and Bea responded positively to
increasing the group size.
I recognised that the group dynamics would change and that I would need to be
observant. Already Pam was taking centre stage. This could become a problem in
future sessions. I needed to think how we could manage her repetitive contributions.
I reminded myself of all the personal health achievements that each woman had
made since joining the group and that the process was likely to be beneficial for the
next four women to join.
Analysis of the fourth PAR Group session
Women all talked about eating healthy food, however only Vera abstained from
eating black pudding, the highlight of the meal prepared by Marjorie.
Psychological issues seemed to be one of the key features discussed in this
session. The atmosphere was tense in the room as they shared their innermost
feelings. The women described how they felt in terms of trying to balance what to
eat and to keep their blood sugar levels down. This balancing act seemed to cause
feelings of depression and anxiety. Bea tried to reassure them that they should not
be worrying so much about their glucose levels as it naturally increases with age.
The women asked if their higher blood sugar was a part of the ageing process
rather than a body dealing with diabetes. While the others wondered about a ‘touch
of sugar’ being part of ageing, Vera did not accept this readily.
Most women had to travel some distance by public transport, but they seemed to
think that being in the group was important and worth the effort. Bea remained the
152
quiet member but knew when to raise pertinent issues that stimulated further
discussion. Relationships were beginning to form as both Vera and Marjorie
discussed going on holiday together. In considering Tuckman’s (1975) theory of
group dynamics then the group is at the storming stage where some members of
the group are vying for position as conflicts and power struggles were emerging
between Vera and Pam. However the conversation refocused again on the GP not
responding to their chronic condition and other physical complications and the
women reiterated being ignored by them. In the group they had a voice.
Fifth Session
By the fifth session, a new participant who agreed to be interviewed asked to meet
Vera, Pam, Bea and Marjorie. I discussed this matter with the women who agreed
that Jillian should join them for lunch at Bea’s home. The women felt it would give
them the opportunity to meet her and to put her at ease. Following lunch as agreed,
Jillian left the group and the more formal and taped part of the session commenced.
Marjorie commenced the conversation by admitting that she had not taken her blood
glucose levels. Vera shared with the women the menus that she had brought in that
showed the carbohydrate and protein content of certain key foods that they should
eat. Pam changed the topic to diet and informed the group that she had still not
mastered the advice offered by the dietician regarding what she should be eating.
She kept a record but problems arose when she was out socially as she could not
find appropriate food to eat. I asked whether she could take some food with her.
Pam reflected on this question and after a while responded by saying that perhaps
she could take a small food flask but then expanded on how the condition can take
over your life. She described how it felt when you have the condition “it is a whole
life time like any other person but the illness takes over all the time and it is like a
balancing act which you don’t win”. Pam continued talking about her physical
problems, the most recent being “her swollen feet”. She informed the women that
she had seen the GP who was going to reduce her blood pressure tablets.
Vera also shared some information she had received from the Balance magazine
with a separate testing guide. She remembered the previous group’s session on
testing so thought it would be a good idea for them to know why to test and what to
do with the results.
Pam further explored with the women her plan to stop her Metformin because it was
making her ill. She said that “she was going to manage her condition with herbal
treatments and diet”. At this point we talked about whether you could just stop
taking the prescribed medication. The women responded individually. Marjorie
thought she could if she is taking alternatives. Vera thought it was a vicious circle.
Bea felt if she wanted to she should try it. With the varied responses that Pam
received from them, she commented that she could reduce her blood glucose levels
if she ate alternative things for example fruits from Guyana like paw paw and
vegetables like yams and plantain. Vera then offered her a word of caution about
discontinuing Metformin. Vera said “your system has got used to it so the insulin
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that you are producing is partly dependent on your reaction to the Metformin in your
system. If you remove that, what happens?”
There was a further discussion among the women who talked about friends whom
had stopped taking Metformin without any repercussions but they recalled other
stories of individuals who had to go back on some form of medication when they
stopped.
Action
Vera changed the focus of the session by handing out information on Caribbean
recipes for the recipe book. The women discussed vegetables like green bananas
and ackee that were not eaten as part of a Guyanese diet as these recipes were
Jamaican. They discussed the various actions that they intended to take before the
next session. Bea said she “was going to make exercise a priority” whereas Vera
admitted that she had seen a slight improvement in her condition. Marjorie agreed
to carry over her actions from the previous session to do more exercise. Pam told
them she was going to bring in another book on diabetes to the next session to
share with them.
Reflections: Facilitator’s role
On reflection, the emphasis in the session was on food, as usual. However it was
also about not taking prescribed medication. Pam who again demonstrated a
strong belief in alternative therapies made known she wanted to cease her
medication. I did not expect the women to give Pam words of encouragement. Only
Vera seemed to give her a word of caution. There was tension and even conflict
among the women whether to continue with the medical model of treatment for
diabetes or consider other options. I clearly needed to consider how this should be
handled wisely. I had listened and the women had strongly voiced their opinions. I
refrained from interjecting. I wanted to witness the way the women intended to
resolve this tension without my interference. But given my evidenced based
background I was in conflict.
Analysis of the fifth PAR Group session
There seemed to be a lot of misinformation among the women that highlighted their
educational needs. This could become a real concern as the majority of these
women have had diabetes for several years showing the signs of serious
complications yet they were prepared to stop their prescribed medication without
consulting the medical profession. I needed the expertise of a diabetes specialist
nurse and seriously thought about bringing forward her entry into the group.
Food and diet remained a key feature. There was a preoccupation with food and
tension when trying to balance a healthy diet versus eating what they would like,
preferably food with Guyanese flavours. A question arose regarding what was truly
Guyanese food because other Caribbean islands had a similar diet. Perhaps
through their food, the women were preserving their identity of their roots and
heritage.
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Vera was the problem solver in the group as she had a clear authoritative voice that
encouraged the other women to listen to what she had to say. I believed Vera gave
Pam some sound rational advice about discontinuing her Metformin but this was
ignored. However Vera was emerging as the leader of the group even though Pam
is more vocal. I believe that they were both vying for that position within the group
which was still at a storming stage (Tuckman 1975).
The group action recipe book was the clear choice but ‘we’ may require the
expertise of a dietician to discuss calorific values of Guyanese foods in recipes.
Sixth Session
Two new members Agnes and Jillian joined the group however Shirley and Jane
whom I had interviewed declined joining. I kept a dialogue going with Jane by
telephone throughout the life of the inquiry but Shirley decided not to remain in
contact (See Table 4 for attendance list, p141). We welcomed the new women to
the group with formal introductions. I gave a quick resume of the inquiry and
participants’ roles as co-researchers. We also re-established the group norms.
The four women from the current group reported on the actions they had set from
the previous session. They all felt they had achieved these and wanted to share
them with the group. Vera and Pam commented on their improved healthy diet and
the way in which they had been monitoring their sugar levels. Bea remarked that
she had been walking on a regular basis again and made the connection between
walks and the lowering of her glucose levels. They all talked about the importance
of exercise especially keeping fit within the home environment during the winter
months.
Jillian spoke spontaneously about her current glucose levels, medication and diet.
Agnes talked about being diagnosed recently. She talked enthusiastically about the
diabetic course she had attended and the good service she had received from the
diabetic clinic. She had felt depressed following the recent death of her husband
and the effect the loss was having on her diabetes. In response Vera highlighted in
one sentence that “diabetes is such a powerful thing that you have to learn how to
live with it”. Jillian shared her experience when first diagnosed. She said she too
had been unaware of her symptoms that were related to diabetes and this had led
to a delayed diagnosis. Only Agnes is the exception in that her diabetes was
detected early and she has had excellent health practitioners follow up, according to
her.
Both Agnes and Jillian talked about their children, family members and spouses
who also had diabetes.
The women reported the daily actions they took in navigating their way through the
pain and suffering in their everyday lives. Vera captures some of these feelings in
her comment:
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I don’t think there is a lot of research being done into the associated aches and
pains with being diabetic. Diabetes is an actual savage onslaught on your immune
system. It is never going to be the same again. It will only get worse. We can never
get better. When you get an ache and pain, it sends a signal it is your turn today. I
think what the hell, just behave yourself. It must be related.
Women agreed with a further statement made by Vera: “you have to tell yourself
that you are not ill because if you label yourself then you do feel ill particularly
during winter”. Pam informed the group that she was going to “get rid of her
diabetes and arthritis”, but Vera stopped her in her tracks commenting “you have to
accept it”.
Agnes raised the issue of hypoglycaemic comas which had been discussed in the
first session. She explained the advice she had been given by the hospital to have
something sweet with you at all times. Vera advised Agnes to carry a card but
Agnes responded that she had a bracelet. Marjorie too was advised to carry
identification as she admitted that she did not have anything.
I used this opportunity to share a research paper (Diabetes UK funded Newcastle
University study - 11 participants took part, reversing Type 2 Diabetes with a strict
low calorie diet of 600 calories a day under close supervision of a medical team). I
had asked the women to read it if they could beforehand? This was followed by a
lengthy discussion among the women about when you eat something too sweet and
the effect this can have on the diabetes. Vera said:
You know full well when it comes to diet, if you went and eat something too sweet or
whatever in an hour when you are digesting that food, you get so heavy headed that
you just want to curl up and sleep or die or whatever. It can be so severe. If you can
just avoid those things which are not always possible, we are only human after all, if
you can more often or not avoid those things, you keep it in... If you get those awful
highs and lows, you do think you are dying, something terrible and all the aches and
pains start. Is life really worth living?
I interjected at this point by highlighting the positive things Vera had achieved for
example, the fact that she had made the long journey to my home to which the
women agreed. As time was moving on, I asked the group whether they wanted to
share anymore of their experiences. Vera offered to lead the discussion regarding
the recipe book at this point.
Action
Vera shared her views with the new women. The others joined in regarding what
they could put in the book. Various Guyanese recipes were put forward such as
pepper pot, roti and curry but Vera admitted that it might be useful to contribute a
recipe that they used that kept the blood sugar down. They each realised that they
had to think about calories in a day. This session came to a natural end with each
woman promising to submit a recipe at the next one.
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Reflections: Facilitator’s role
I felt this had been a very successful session especially as two new members had
joined an existing group. I held the session at my home and provided lunch that
consisted mainly of salads and chicken followed by fruit salad. I personally do not
eat Guyanese food as it can be high in starch and fat so it was not present in any
dishes provided. I experienced some conflict in providing the type of balanced meal
without assuming a nurse’s role. I kept reminding myself that I was in a research
role but it was difficult to divorce the two. I grappled with the issues as I engaged in
the inquiry as researcher, academic, nurse, insider and someone who shared
similar life experiences as a Guyanese woman living in the UK. The group norms
were re-established as two new women had entered the group. In order to make the
two new women feel inclusive, I encouraged them to share their experiences with
the women.
From my previous experience of conducting groups, I was aware that adding new
members to an existing group can be disruptive because it affects the interactions
and chemistry within the group. In order to reduce the effect of this, Jillian had
already been introduced to the women whereas Agnes had never met them.
However, I had asked one of the women to accompany Agnes to the session.
Considering this was her first time she felt encouraged to share her personal
feelings. These actions I felt helped to make the session successful. Initially Agnes
sat on her own rather than joining the group at the table however with some
encouragement she joined in and participated well in the conversation.
On reflection, there is connectedness with Guyanese people that as a Guyanese
woman I had taken for granted. This connectedness may have helped the group
cohesion even when new members joined the group. Rather than one member
trying to take control, it was obvious that all the women played a role in contributing
to the issues discussed including the proposed group action. It was reassuring to
see that another member of the group rather than me had prevented Pam from
taking control. I really wanted to see this happen more often in the groups. I needed
to think how I could facilitate this type of interaction.
Analysis of the sixth PAR Group session
The women were adding to their knowledge base about their long-term condition.
The issue of loss and depression had featured again in the group and coming to
terms with the condition even though a majority of the women have had it for many
years. The chronic effects on the body and dealing with constant pain and
discomfort illustrated the long-term effects of living with diabetes as experienced by
the women. It was difficult to gauge what stage the group was going through.
Perhaps with reference to Tuckman’s (1975) model, the group was still going
through the storming stage as some conflict was present when Pam tried to
monopolise the session. Pam seemed to be in a state of denial about her illness.
Two of the women whom I had interviewed did not attend the group. Both stated
that they were already committed to a busy daily schedule. I kept in contact with one
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on a regular basis as part of the inquiry. The other woman declined contact but was
willing to contribute her personal story. Her voice is found alongside the other seven
women in Chapter 5. One has to accept that some people choose not to participate
owing to other commitments or family responsibilities. It occurred to me that whilst
the group was successful for the women that attended and that they had made
significant changes in their lives, the group process is not for everyone.
Seventh Session
This session was held at Jillian’s home (see Table 4 for attendance, p141). Jillian
served lunch followed by dessert. Marjorie declined the offer of dessert because
she said she had to be sensible; if she was not it would raise her blood glucose
levels.
Actions
Following the meal the women talked immediately about the actions they had
achieved since the last session. Jillian reported that she had had her diabetic check
and her HbA1c was 6.2. Vera said she had had a series of investigations at one of
the local hospitals and had been asked by the consultant to take Metformin plus
insulin because her glucose levels had been so erratic. She had subsequently
refused Metformin however her intention was to keep monitoring her diet and
glucose levels. Pam had seen a different dietician who suggested that she weighed
everything she ate but she felt that would be time consuming. Marjorie commented
on her changed eating habits and the positive attitude that she had adopted since
attending the group and admitted that she ate very small portions with very little
meat.
Marjorie reported she had researched on the internet the foods that they ate for
example, plantains and yams. She offered to collate all the information and to carry
out further research on the calorific value of Guyanese foods. They all debated
whether they ate these foods all the time or only on special occasions. They
realised some of the foods could send their ‘sugar up’. Pam felt:
What we need is Guyanese food that we can buy and eat. What we need is a calorie
count for Guyanese food and if we have the calorie count, we can put together the
Guyanese food because we can see it has got coconut milk, plantain and so on.
Vera remarked that plantains have a lot of carbohydrate and cassava is full of
starch. Marjorie conveyed this information to them. She stated that “I started
research on calorie count and carbohydrate count; it was surprising how much was
in plantain. We will learn about ourselves”.
We talked about the recipe book and whether to go ahead with it. We needed to
bring all the information together when we met the following month. The women
talked again about continuing their individual actions. Jillian was planning to lose
more weight and to monitor her blood pressure. Vera described her battles with the
medical profession and her task was to have her back pain investigated. Marjorie
planned to continue with her healthy diet and to obtain the results of her
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investigations. Pam highlighted that she intended to remain mobile by walking more
and sticking to a diet.
Reflections: Facilitator’s role
I reflected on every group straight afterwards and made a note of things that had
been discussed but not taped, for instance when we were eating. Increasingly the
group was serving as a forum for the women to discuss their ideas, views, thoughts
and feelings.
Analysis of the seventh PAR Group session
I observed an improvement in all the women who attended this session and
applauded them for their achievement. They were making an effort to stick to their
diets but highlighted the difficulty in not consuming their favourite foods. They
demonstrated the complexities of diet when you had diabetes and possibly
experienced conflict when trying to avoid certain foods. Food to them was such an
important issue and is a prominent one in the Guyanese culture as food is used as a
symbol of togetherness when socialising and as a way of confirming cultural
identity.
It was also reassuring to see the insight that the women were developing about the
foods that they loved to eat but recognised the need to review them. They cooked
both Guyanese and European foods but showed their preference for Guyanese
foods. On reflection I became more aware from the interaction with the women how
individuals with diabetes felt when they could not eat certain foods? These feelings
had been explored in the session, the yearning and craving seemed to deepen
when you could not have it even when they strived to keep to a diet. It had taken
most of them a long time to develop this awareness of the types of food that they
can eat. Preoccupation with food is one of the constructs that emerged from the
women’s stories (see Chapter 6).
In my personal reflections I noted that in this particular session the women spoke
about coping with life in England and about being Guyanese plus the issues that
they had faced over the years. Growing older in an English environment was a
major concern. They spoke with some regret and longing to return to their own
culture and country. They also expressed disappointment that two other participants
had decided not to join the group. I believe that they were making the same
assumption as me that because this was a Guyanese group, they would want to
attend. Members of the group were surprised at the other women’s reluctance to
attend but it was agreed that we should keep the group size to the current number
of six rather introducing anybody new at this stage of the inquiry.
Eighth Session
Vera hosted this session (see Table 4 for attendance, p141). I commenced this
session because I needed to have the group norms taped as we had discussed
them at earlier sessions and laid down ground rules but did not have a recording;
therefore I reiterated them. Precisely because the UK Guyanese community is small
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I reminded the women about the need for confidentiality and not to discuss the
issues raised among them outside of the group. Their names would be changed to
ensure anonymity. I had got into the habit of sending updates prior to the sessions
and giving an extra copy at the session so they could refresh their memories of what
had occurred. I shared with the women a compiled list of calorific values of food that
I had received from Marjorie. Unfortunately due to illness she could not attend.
Vera offered immediately information from the Balance Magazine and other
sources that she wanted to share with the group. She said:
This is all very spectacular because it is all in colour and it gives you all the
information you need about portion sizes, the carbohydrate content, the protein
content and the balance that you should try to achieve but obviously you have to
take it with a pinch of salt or sugar obviously you have to stick to these rigid
portions.
Pam said “Guyanese liked and ate far too much food”. Surprisingly Vera had
collated all the information that she had been discussing in previous sessions about
diet and food and shown the women pictorially the foods to avoid and those they
could eat. Bea captured some of the conversation when she gave a rationale why
they should be eating smaller quantities of food. She stated “when you eat little
portions you can control the sugar level and I thought I must do that. I think it is
quite good if we can follow this”.
Following the discussion, they all requested copies which I agreed to photocopy and
circulate. I chose that moment to update the women on recent information that I had
obtained from the Diabetes UK organisation regarding research on ‘diet only’
treatment for Type 2 Diabetes. In keeping with the update that I had just delivered,
Vera informed the women that when she was first diagnosed she had been put on a
stringent diet that had been supervised by the hospital; the diet consisted of only
apples, no milk or potatoes but a little portion of rice. She claimed that she got her
diabetes under control. It was only when she was referred back to the GP service
and her condition was not monitored closely that she relapsed. This was coupled
with events happening in her life at home during that time, she said, the loss of her
father and stress at work that may have affected her condition. Vera believed too
that a strict diet could help but it needed to be monitored carefully.
Vera recognised that other factors could cause diabetes but assumed a genetic
predisposition. She responded by saying:
If they have the right diet and exercise and perhaps it wasn’t in their genes, it was
stress related or lifestyle then they stand a pretty good chance being able to
maintain that status quo but for other people if your pancreas is not producing the
insulin then you have had it.
The conversation continued with Bea who highlighted that her Indian grandmother
had diabetes. She believed that there was a genetic predisposition and said:
My grandmother came from India; I think I inherited this diabetes through the genes
because I knew about diabetes. I tried to beat it, not to put on too much weight, I
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tried to do everything, not to drink sugar in my tea, do this do that and what
happened but I still got it.
Pam’s Indian grandmother also had diabetes but she denied this when the women
questioned her. Vera and Bea challenged her when she suggested that her
diabetes was caused by an accident. Both women exclaimed that “it does not come
on just like that”.
At this point I asked whether they would like a diabetes specialist nurse to attend
one of the sessions to answer some of the medical questions they had been asking.
I gave them a list of questions previously asked to peruse. It was agreed that I could
contact a specialist to ask her to attend a session.
We then switched the conversation to what being Guyanese meant to them. Vera
admitted that she never gave it much thought. Bea felt it meant we could arrive
unannounced. “We did not have to telephone our Guyanese friends first, they are all
friendly and caring”. Pam believed we like people but Jillian said:
I think that because we all lived together no matter what race you were, we intermarried and everybody adopted everybody’s meal, culture and everything. That is
the link. Most of us still have our school friends and I think not many people around
the world can say that and I think because I cook Indian food, African food…….
Most Guyanese women especially can cook anything and that makes us unique. We
have a very friendly culture. All my Guyanese friends don’t ask questions …
This led to the closing stages of this session. Before the intended actions were
discussed, Vera immediately asked if she could raise the issue of the recipe
business, the group action. She said:
The more I think about it and the more I realise the restrictions on our diet, the
Guyanese food menu seems to be disappearing fast. It seems to be a question of a
few vegetables, meat and fish and all the seasonings going out the window so I am
beginning to have second thoughts about this recipe business. How do the rest of
you feel?
Jillian conveyed how she felt about it. She already had a recipe book for diabetics
that she had never opened so she was uncertain about the usefulness of a book.
She felt some of the recipes could fit in with their Guyanese foods. We agreed as
they reflected and gave some thought to their diabetes, how they were managing
and learning to live with it, the difference in them now when they compared with
what they were like before. The women reported how much Marjorie had changed.
As Vera and Pam commented:
I know Marjorie is not here but she was very resistant to change. She was eating all
the cake and not happy about not having her Christmas cake. She lost weight. She
radically changed.
Reflections: Facilitator’s role
There was much laughter in this session and I felt my facilitation skills were
developing within the PAR process. They spoke with pride about what it meant to be
Guyanese. They seemed to be at ease with each other as they voiced their feelings
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and concerns. There were periods of silence during the session to reflect and think
about what was being said. I chose this session to provide information which was
an update on a study conducted on individuals newly diagnosed with Type 2
Diabetes using diet only because it had been mentioned in a previous meeting. The
researchers (Professor Roy Taylor led the Newcastle study: 600 Calorie Diet) had
had some success but it was a rigid diet, very low on calories under medical
supervision. It was not something that people should try or do on their own. At the
moment the researchers were still awaiting the full results of the study.
Analysis of the eighth PAR Group session
The food was less sumptuous and smaller portions were eaten. They showed real
concern for Marjorie’s recurrent ill health and missed Agnes who could not attend as
she was abroad on family business. Vera had continued in her educative role in
raising awareness about diabetes. She had provided more information for them to
recognise hypoglycaemic attacks. Marjorie had conducted an extensive search on
calorific values of food. I personally felt this had been a very good educational
session about self–management which this women’s group had led. The learning
process among the women and change in behaviour had been evident as they took
on board the information that they had received from each other but from Vera in
particular.
We talked about what being Guyanese meant as Guyana crept into most sessions.
In fact we agreed that it was an acquired uniqueness that was difficult to describe
initially but when we thought about the question we were all able to give a range of
answers that were similar in nature. Being Guyanese is another construct that
emerged from the stories in Chapter 6, it was important to the women to uphold
their traditions.
While food had been the focus in this inquiry, the awareness of how much they liked
and ate food had developed during these sessions. In actual fact they were
surprised to learn that they normally ate rather big portions of food. It was the first
time as a group they had given a considered approach to what they exactly ate and
the quantities that they should be eating. I suggested that we were moving through
different stages within the group and quite possibly through some kind of
metamorphosis.
They realised that they needed to make lifestyle changes in managing their diabetes
in light of all the information they had received from each other and other sources.
The women had been making a concerted effort to take regular exercise. However I
believed that they were not fully aware of all the changes that they had made since
they joined the group. The group has been serving its purpose to which they all
agreed.
The group action had been reviewed and as part of the awareness exercise, they
realised that Guyanese foods had high carbohydrate content. They were hit with the
facts that including Guyanese foods in a diet might not be such a good diet for
people with diabetes.
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The women had reached the performing stage in Tuckman’s (1975) approach to
group dynamics by making a decision about the recipe book but they remained
undecided whether or not to continue with it. I did not intervene in any solution as
they made decisions together about the recipe book.
The women were developing a shared vision about what they perceived as good
diabetes self-management. Pam continued to be challenged by all of them
regarding her alternative practices and beliefs in managing her diabetes. They
reminded her that she had five sisters with diabetes and she should consider that
there is a predisposition to the condition. Pam seemed to be in denial regarding
what was happening to her but even with a rational explanation she appeared to be
reluctant to accept it.
Action
I was pleased that I had finally suggested that a diabetes specialist nurse attend
one of the sessions. This met with the women’s approval as they recognised that
there were still many unanswered questions regarding their long-term condition. I
was not in a position to answer them or their respective GP practices who,
according to them, had failed to give them the information they needed.
Ninth Session
This session was hosted by Pam (see Table 4 for attendance,p 141). Unfortunately
three women could not attend two due to illness and one was still abroad. Lunch
consisted mainly of salad and vegetables.
Bea raised an issue regarding the neuropathy she had been experiencing. She had
previously discussed this complication but informed the group that she had been
prescribed an antidepressant. She expressed being shocked at being given this
medication as she was not feeling depressed. They all laughed at Bea‘s response.
Depression became a focus for discussion. The women reported various responses
to feeling depressed. Bea stated she never felt depressed because she knew both
her father and grandfather had diabetes. Vera and Pam likened their feelings to
being low but then Vera admitted that she got depressed about all sorts of things.
Vera related the many occasions that she felt depressed for example, she said:
All the things you know that are affected and so you are finding out a bit by bit down
the line, it makes you depressed because when I found out what was happening to
my eyes and nobody had bothered to tell me this was a symptom of the diabetes,
nobody had told me the dire effects in your eyes, those are the things that make me
depressed.
Vera admitted that she needed to be educated about the effects of the condition
when she was first diagnosed which may have prevented some of her complications
but the service was not available to her twenty to thirty years ago. She
acknowledged that it might be different now.
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Action
During their exchange of information, the women expressed that they had been
monitoring what they ate since the last session. Pam recalled that “since I saw the
portions of foods on the hand-out I have been watching what I eat. I bought some
sweet pears but only ate a half. Normally I would have eaten two”. The three women
reported that as the Christmas season was approaching, they could be tempted.
However they all agreed that they were going to eat smaller portions and Bea had
planned to continue with her walks.
Reflection: Facilitator’s role
In this session, I encouraged exploration of feelings especially depression. I had
been aware that it was an issue that had been given minimal attention although it
had been raised before. Nevertheless it was pleasing to hear the responses that
captured the women’s feelings. I still often wondered about my role in the group. I
remained silent and only when appropriate I made a comment so that the women
had the space and time to interact with each other. However I have observed the
progress the women have made as they seemed motivated to bring about
significant changes in their lives especially when faced with the difficulties and
complications in trying to manage their long-term condition.
Analysis of the ninth PAR Group session
As the session progressed the women became less tolerant of Pam’s repetitive
behaviour. I queried whether she had been experiencing memory problems as
retaining information had become a concern.
The conversation shifted again to their diet and what they had been eating. The
women realised that if their quantities of food were too small, this could give rise to
a hypoglycaemic coma. I witnessed a changing attitude to food even when the
women had lapses. The group action was not discussed and I was uncertain
whether to raise it or not but they raised concerns about the festive period and
wondered how they were going to manage when the traditional Guyanese food was
given to them. This could be a dilemma when it occurred but they had no easy
answers for those issues raised.
Tenth Session
Marjorie agreed to host this session because she had missed a few due to ill health.
We had been in contact by telephone and kept her involved (See Table 4 for
attendance, p141). Marjorie prepared lunch with a variety of salads, fish and
chicken which she called healthier options. I outlined to the women that as part of
the PAR research process and their role as co-researchers whether they would
agree to becoming involved in the analysis of the data. They all readily agreed to do
it later in the session. Jillian continued the conversation that she had commenced
during lunch. It had not been taped but she had been describing to the women how
she felt when first diagnosed.
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Vera had led this discussion and asked:
What we are wanting to know Jillian when you were first diagnosed bearing in mind
your family history of diabetes, what was your instant reaction? Were you appalled
by it? Did you feel that you can handle this because it has been around in the
family? How did you actually feel?
Jillian took the floor and described her reaction to the diagnosis. She stated that:
My reaction was not me now because my mother had it, my father had it, my sister
had it and one of my daughters, she had it when she was at Uni and I thought “oh
my God here I go” but I had two sisters that had it so I thought here I go. I thought
it was skipping me, the others have it but it has………
Jillian’s story sparked off more discussion among the women how they felt when
diagnosed. Marjorie then identified the way the group had helped her. She said:
I would have been going on in my own sweet way, I would have been... now and
again I pull myself back but yeah I mean I bought a chocolate today, a Cadbury’s
fruit and nut and that is in the fridge. What would happen is that I would have a
little square and that chocolate would probably be in there two months whereas
before I would have finished it already since I brought it home. I am aware of the
things that I shouldn’t do where if I try and I keep up to it. The group has helped in
lots of ways.
Both Bea and Marjorie reiterated information about their renal problems but Bea
identified that her kidney problems had shown a significant improvement since her
medication had been changed from Metformin to insulin.
Marjorie described her GP as ‘an idiot’ who seemed to lack the knowledge and
understanding of the investigations that had been conducted. She also recalled how
she was misdiagnosed for another physical problem when she saw another GP
because she no longer trusted hers. She said “I don’t go up there because I am now
seeing one, this woman now she thought when I had appendicitis that I had
peritonitis”. The women laughed hysterically at her comment. She responded by
saying:
Don’t laugh I couldn’t move, you couldn’t even touch my tummy there and she
didn’t even write a letter to the hospital. She said go straight to the hospital so I
ended up getting my daughter. I got her to take me and they said it wasn’t that, it
was diverticulitis.
Pam offered Marjorie some advice regarding how she should respond to her GP in
future. She said:
You got to be strict. You are going to say to them how long you have been up and
down. I am fed up of all these different things. I want to go to the hospital and have
these checks done of my whole body to find out what is wrong. They don’t know
what is wrong.
The tempo in the room changed to the Expert Patient Programme as some of the
women had attended the course. I chose this moment to remind the women that
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they were the experts of their illness and to reinforce their strengths in selfmanaging.
Constructs
This provided an opportunity to discuss the constructs that had arisen from their
stories and to gauge their reaction to them. These resulted from the analysis of their
interviews. I offered to read about (1) being diagnosed, (2) symptoms, (3) family
history, (4) gathering information, (5) self-management / alternative therapies, (6)
expected lifestyle changes, (7) complications, (8) religion/faith, (9) depression/
feeling low, (10) stress and diabetes, (11) preoccupation with food, (12) being
Guyanese and (13) maintaining contact with the diaspora. As I read them out loud
they all expressed total agreement with what was being said. The women engaged
in further discussion regarding the statements which they claimed supported their
views.
Vera summed up what the medical profession and GPs should provide for people
with diabetes. She believed that:
What we need from what we have all said if this little group can somehow get across
to the medical profession and the GPs you know if you are diabetic something in my
hip could be coming from the diabetic condition. Treat you as a whole; don’t treat
you as you have six different parts in your body.
Action
Vera broached the subject of the menu book and informed the women that she had
given second thoughts to the wisdom of the book. She gave the following reasons
why she felt it was no longer a good idea. She said:
One of the reasons being that because we are in this country and we tend to eat
sometimes in Guyanese fashion and English fashion and that and the other and
because you are so restricted in the things you can have, I tried to think of a recipe
that I would want to put forward and I couldn’t think of anything that was
particularly Guyanese so is it a good thing or bad thing? We are all interested in the
carbohydrate and protein and whatever than we are in the actual content in what we
are eating. Maybe we should look at it from a different point.
Mixed feelings and suggestions were put forward following Vera’s comment.
Marjorie tried to keep the interest in the book going by suggesting perhaps we could
include Guyanese recipes that were diabetes friendly but only Pam responded with
a comment.
We discussed suggestions regarding how we wanted to get that message across to
the wider health care audience which included influencing policy in order to get the
attention of the politicians to listen to the BME communities who had diabetes, to
take note of their issues like diet, management of their condition and the
practitioners not meeting their needs. I suggested a website but Marjorie who had
experience in building websites described the pitfalls in producing one. The
conversation moved on to the dissemination of the results of the study. How were
we going to do that as a group? Pam suggested that they needed a permanent
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supportive group and in her response outlined what she felt was the benefit of a
group like their current one. She highlighted:
I think we need a permanent group like this to grow a little bit but may even have
branches off of it. At the end of the day unless you talk about it, Marjorie may have
read a lot of books and papers about it but nothing happens once you read it. I saw
the greatest jump in Marjorie after one meeting. The next meeting Marjorie claimed
that she had lost weight. I thought that was the greatest progression so in a way if
she had never come to the group
They all echoed positive responses to what she had said. Vera mentioned that
Marjorie used to eat everything including her favourite Guyanese dish known as
pepper pot and Marjorie agreed that she would have still been a size 22 if she had
not changed her eating habits. The session closed after that final remark.
Reflections: Facilitator’s role
On reflection, I encouraged the women to further explore their feelings when first
diagnosed. When the atmosphere in the room went flat, I used a positive comment
to lift their spirits by focusing on their achievements. I am aware that when engaging
with PAR that the participants set an agenda for each session. There have been
one or two leaders within the group who took control of events and raised issues in
the sessions. There was no fixed agenda. However when the occasion arose and a
member of the group was silent then I intervened and brought that individual into the
conversation. In actual fact I generally said very little at the sessions except to
clarify, summarise what was said or move the conversation on when they digressed.
In this session, I spoke more than usual but there was a need to share information
about the constructs and discuss the analysis of the study. All the constructs were
validated.
Analysis of the tenth PAR Group session
Depression has been an issue of concern as the women have felt depressed when
they had made an effort to stick to a diet yet the blood glucose levels remained high.
They all expressed the difficulties of living with their long-term condition which may
not have been couched in those actual words but they expressed the problems of
managing the “highs and lows” of the condition. There was much discussion about
how they have been treated by the medical profession and still continued to receive
a poor service.
I was reassured by the women’s responses to the 13 constructs. We looked at the
data together and they agreed we had talked about similar issues from the PAR
taped sessions and feedback I had provided.
Despite their apparent knowledge deficit, the women were keen to communicate
that they were proud of their diabetes self-management and what they had achieved
since joining the group. In light of our ten PAR group sessions, the women
suggested that:
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
They would like GPs to be responsive and to listen to them about their
symptoms.

The well-woman clinic served as a good service delivery model for people
with diabetes. By that they meant having access to a clinic and staff who
routinely monitor their chronic condition including their vision and feet.

Early detection of diabetes was important. Vera had waited eight years for
assessment of diabetes which the women believed was unacceptable.

They needed an emergency call centre with contact numbers and to know
how to access advice and treatment 24/7.

They needed better preparation for and education about diabetes when
newly diagnosed, inclusive of their families.

They wanted to be kept in touch with new treatments in the field of diabetes
for example, Balance Magazine

The Balance Magazine might be a good resource but needed to be more
reader friendly.

An equitable service was required, one that gave them access to the same
resources for example, testing equipment, glucometer, strips and a
streamlined pharmacy service to provide insulin. The women had
experienced difficulty in obtaining insulin and equipment from their GPs.
In the effort to address some of the difficulties raised in the main constructs, the
group recognised, valued and acknowledged the information exchange within the
group. Most suggestions made by the women are congruent with difficulties
experienced when living with diabetes.
I noticed cultural cohesion in this group. It became noticeable that ‘we’ shared an
understanding of Guyanese culture, food preferences and that we could talk about
our previous lives in Guyana, even more so when discussing a ‘touch of sugar’ or
diabetes that was so prevalent in our group and back home.
The recipe book no longer seemed to be a good idea because they all realised the
difficulty in putting a book of recipes together consisting of Guyanese foods that had
a high carbohydrate and sugar content. This was enlightening. The women were
becoming aware of how their favourite foods raised their glucose levels. The cultural
meals were perceived more as a treat rather than as part of a regular diet.
The women had made realistic and manageable changes as a result of the group
which had given them confidence to appraise and review how they lived with their
long-term condition. They congratulated each other on their achievements. They
shared expectations of the kind of service that should be accessible to them. Yet
after experiencing this long-term condition for so many years, the health profession
were apparently still failing them in some of their service needs.
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In terms of outcomes, the women wanted to disseminate the information from the
inquiry and to make their suggestions known. They have all stressed the importance
of meeting up, sharing and learning from each other and the benefits it had brought
to all of them. However they still have outstanding issues and questions that require
answers or even clarification. We had agreed to invite Mary, a diabetic nurse
specialist to the next meeting. I had given Mary a list of questions asked throughout
the PAR sessions so that she could prepare herself. The women came prepared to
ask their questions. Each woman had given Mary a brief overview of their condition
before the session started. This particular meeting, the eleventh session, took about
three hours.
Eleventh Session
Mary the diabetes specialist nurse was invited to this session. It was held at Vera’s
house. All the women (see Table 4 for attendance, p141) attended this one.
Marjorie asked the first question ‘is coconut milk good for you?” Mary responded
by saying it was good to drink but advised her to check to see if it had any added
sugar because it could be a problem for those who have diabetes. Another question
was raised regarding cholesterol levels. Mary gave a brief description about HDL
and LDL which is considered to be good and bad cholesterol. Vera asked: “whether
statins should be taken to reduce cholesterol levels?” Mary highlighted that
statins can be taken but cause side effects that included muscle cramps and skin
discolouration. She suggested that Vera should go on the internet and research the
side effects prior to seeing her GP. Then a decision could be made whether to take
it or not. Vera admitted that she had a problem with her GP and was unsure how
she could manage this situation. She said “how do you debate with them that you
don’t want it. He sees my cholesterol is 5, the good one is 3.5 and the bad one is 2 .
something”.
Mary reminded the women what was an acceptable limit for cholesterol levels for a
diabetic. She stated that the body needed cholesterol for the cells to function and
suggested that if cholesterol was between 2 and 5, there is nothing wrong with that
reading. She believed that there are a lot of myths around cholesterol levels. Pam
asked: “is there a way you can check your cholesterol levels?” Mary advised
that there is a machine that is similar to the glucometer that is reasonably priced but
the strips used to test the levels are expensive to buy. Pam felt if she could test her
cholesterol levels then she could monitor them more effectively.
Marjorie asked: “what are the side effects of steroids when you have
diabetes?” She said she had refused to take what had been prescribed. Mary
suggested avoiding them with or without diabetes because you can experience a
number of problems including thinning of the bones and gastric ulcers. She said:
And before I had a fight with the doctors, I came out and it took me six/seven weeks
to go to my doctor and say “look this is what they are saying, my anaemia is being
caused by rheumatoid arthritis and so the only thing to help you is steroids. I don’t
want to go on steroids.
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Pam responded by suggesting an alternative doctor may help Marjorie’s anaemia
but she expressed a different opinion regarding alternative practices. Marjorie
likened the experience with the alternative practitioner to “a scam, somehow he is
on the internet and everywhere but I don’t trust him and then he gave me this stuff,
herbs and whatever I keep thinking it might be grass”.
Mary highlighted that “a lot of people were turning to alternative therapy because
you are now seeing the side effects of the drugs”. Vera asked: “how do we then as
diabetics explore these avenues going on the internet and reading up about
the thing and even then you are not sure?” Mary responded by saying that you
will not get the information from the doctor but make sure the research comes from
a reputable site. There were specific questions that should be considered for
example, is it someone reputable who has completed the study? It is about getting
your information and facts and going with that to the GP. You probably know more
than them about what is going on.
Agnes asked a question about Metformin: “when do you increase or decrease
the dosage as it can sometimes cause diarrhoea and getting cramps in
fingers and toes?” Mary suggested “always best to take Metformin with food as it
would give diarrhoea if taken on an empty stomach. Tingling in the toes and fingers
occur when the sugar levels are too high and if not taking Metformin as prescribed
the levels will go up”. Mary highlighted that the following options can be used to
keep the blood glucose levels normal: karela, cinnamon, soursop tablets and
Chinese green tea. The tea should not to be taken on empty stomach first thing in
the morning because the blood glucose levels are low however it is useful as an
antioxidant.
I asked: “are you advocating that they stop Metformin?” Mary responded “no,
but if you decide to go down the alternative road, you must monitor to make sure
you are taking it properly”.
Marjorie informed the women that she had requested and had commenced slow
release Metformin (Glucophage). Since taking this new form of Metformin, her daily
dosage had reduced from 2000 mgs daily to 750 daily. She is aware that this was a
drastic reduction therefore Mary advised her to monitor carefully. Mary reminded the
other women that “those showing side effects of Metformin should ask their GP for
the slow release option”.
Bea continued the discussion on Metformin by recalling earlier issues that she had
encountered whilst taking the drug. Bea said “she had been taking 1000 mgs three
times a day that caused problems with her kidneys. She wasn’t passing any urine
so told the doctor who didn’t do anything about it”. Mary admitted “that was a lot”.
Bea told her she was now on insulin but the glucose level was dropping too low to
1.5 following a night sleep. She said “she was scared because of how she felt”.
Mary advised her that “she was not eating sufficient the night before; if you are
taking 10 units of insulin, you have to make sure you have enough starch in the
meal. If you are eating a small meal then reduce the amount of insulin that you are
taking. Have you been told about increasing and decreasing?” Bea responded that
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she had been “advised to do so, start with 20 fast release due to increased levels”.
Mary suggested “have two biscuits digestives or cream crackers before you go to
bed. This would prevent their glucose levels from dropping significantly during the
night”.
Other members of the group talked about what they did when their blood glucose
levels dropped. One remarked that she just ate a sweet. Mary suggested that they
needed more than a sweet and should always have a substantial meal afterwards
because the sweet just gave them a boost.
After the women had asked their questions, I flagged up the ones that had I had
noted during previous sessions to get some clarity. I asked Mary: “does Metformin
cause damage to the kidneys?” Mary informed us that “one of the side effects
from long term use is kidney failure. They gave it because the advantages
outweighed the disadvantages. You are on Metformin for ten, fifteen years without
problems but the higher dose increases if you are not looking after your diabetes. It
is a drug that has done wonders for diabetes”.
Jillian claimed that she could not get any podiatry services, “it was cut from my
service and my feet required attention, what could I do?” Mary suggested that
“any nurse at the practice could check the person’s feet to see if there was a pulse
or sensations”. She stated that “it was something that she used to do as a diabetes
specialist nurse but the podiatrist gave a more thorough check-up”.
Further discussion among the women ensued about services needing to be more
culturally specific. Mary responded to this with much scepticism. She believed that
individual practitioners have to assess the individual needs of their patients and
adopt a multicultural approach however this may not be happening everywhere. She
outlined how she used a multicultural approach in her work with the different ethnic
groups especially in terms of cultural diets. To illustrate her response, Mary referred
to a Polish person who had diabetes and how she managed that particular situation.
She felt you had to keep up to date with what was happening in the line of foods
especially if you have to advise people. You needed to know what they ate.
Vera raised the question about: “having a Diabetic Team is a reality in Canada
why not here?” Vera discussed how she felt when she was first put on insulin by
the diabetes specialist and only had fifteen minutes with her. Vera said “nobody sat
me down and said how do you feel about this?” Mary “thinks they are better now.
That is what the diabetic team at the hospital is supposed to do”. Mary reassured
her that things had improved. She explained the type of diabetic team that should
be available now. Mary informed them that there should be diabetic clinics in the
surgery or the practice nurse will check your feet, ensure that your bloods are up to
date and weight is checked. Many of the services have moved out of the hospital
into the community but specific groups like brittle diabetics, children and younger
people still tend to be assigned to the hospital. In response to Mary’s explanation,
all the women described the different services that they have encountered, for
example just GP and a nurse or GP on his own or a clinic or a hospital.
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I asked Mary if: “individuals are diagnosed sooner with Type 2 Diabetes or do
they go on for years undiagnosed?” Mary responded by stating that “new rule is
every new patient that registers with a surgery should have a full check-up including
urine and anyone over the age of 45 is supposed to have yearly sugar levels,
cholesterol and kidney function tests. Check every year from age 45 then over 75.
Doesn’t always happen with some surgeries, it is for you to know this, what I can get
and make sure you get what you are supposed to”. I responded by saying “how
would you know that? Isn’t it a chicken and egg situation?” Mary said “when
diagnosed you are given a full explanation of the disease and annually need to get
your eyes checked, feet checked, HbA1c levels checked, liver, kidneys, teeth
checked and then it becomes your responsibility too if you know you need these
things, you have to push it and book your appointments”.
The session then came to a natural end and everyone thanked Mary for her
contribution to the group and for answering their questions. She was invited again to
attend another session as the women had more questions that they wanted to ask
and we had run out of time.
Analysis of session
During a light lunch, there was an informal discussion which was not taped about
the use of coconut oil and coconut milk which had been gaining in popularity in
England. It is either used to cook or as beverage to drink. Many of the women had
been used to taking this substance as it was part of a staple diet in Guyana.
It is interesting to note that the women asked a range of predominantly medical
oriented questions that have been shown in bold in the above section. They craved
medical knowledge even after being diagnosed so many years ago. I had heard
these questions before and as discussed, I was not prepared to answer medically
oriented questions in my role as researcher. There were recurring themes for
example, acceptable cholesterol levels, side effects of Metformin, and the use of
alternative therapies alongside prescribed medication. The request to have access
to a diabetes specialist team that held culturally specific understanding was not new
but important to share. I felt it was important to obtain answers from a specialist. I
posed the final question that seemed to me something about the loss of individuality
within the diabetic service that led to the mismanagement of the individual’s longterm condition. The women requested to have the diabetes specialist nurse again
because it was so helpful to hear her comments so it was agreed that Mary should
be asked to attend the next session. The women asked for the following issues to
be noted.

Improve dialogue with health care practitioners especially the GP

Would like ownership of their diabetes rather than being told what to do by
GPs and health care practitioners.

Disliked being treated like children
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I recognised that these issues will need to be incorporated into the conclusions of
the inquiry and to be further disseminated as they were important issues for the
women.
Twelfth Session
Bea hosted the above session (see Table 4 for attendance, p141). Agnes could not
attend due to a hospital appointment. At the beginning of this session, I reminded
the women that Mary had agreed to answer some more questions. We all agreed to
structure the session so that all the remaining questions could be covered this time.
Monitoring long-term conditions
Both Vera and Pam commented that “they were going to purchase the cholesterol
machines” even though Marjorie suggested that they could have their levels
checked at their respective surgeries. Jillian informed the group that “she had
stopped taking her statins”. Mary asked “if she had consulted with her doctor and
had had her cholesterol levels checked?” Jillian responded by saying that “she
normally had high levels but had been reading about statins’ side effects so had
discontinued them”. Jillian had started taking soursop tablets as an alternative
treatment. Mary reminded the women again why they are given statins when you
have diabetes. The GPs tend to have a protocol to give it as a precaution against
heart attacks.
Vera asked: “what were acceptable levels of cholesterol for those with
diabetes?” Mary identified the cholesterol level as 6 millimoles but some doctors
may suggest 3 to 4 but 1 is considered to be too low. At this point Vera asked “if
some people were more predisposed to having high levels of cholesterol?” Mary
responded by acknowledging that for some people, “it can run in families”.
Marjorie flagged up the side effects of soursop pills that she had discovered on the
internet. From the information obtained, she gleaned that if you have hypertension,
you should not be taking them. Marjorie wanted to know: “if there were any side
effects when taking alternative medication such as soursop pills with
Metformin, statins and in her case thyroxin?” Mary advised her and the rest of
the women to monitor the situation closely if they were going to take alternative
medication. Mary suggested that they needed to take their blood pressure and
blood sugar a little more regularly. If they noticed that the blood pressure is getting a
little bit lower, then they needed to tell the doctor that they are taking alternative
medication. The GP can advise them to reduce the quantity of blood pressure
tablets that they are taking. It was better to work it out that way but they needed to
monitor to see what was happening to their bodies.
Mary then spoke about protocols used within the GP surgery for those with
diabetes, if not GPs did not receive any funding. She reminded the women about
the list of things that comprise an annual check because the auditors visit the
practices to check the service that has been provided. Mary admitted that she did
not know the procedures for hospitals, but in the GP surgery, you have the QOF
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examination once a year. The PCT will come in and review the information on the
computers and then have a meeting with staff for an update. They will also engage
in a dialogue with patients and review the information held on the computer for
those individuals who have diabetes. They would expect to see that the person’s
stomach, height, weight, BP, cholesterol level, glucose level and their HbA1c have
been checked in a year.
Pam claimed due to stresses in caring for her sisters, she had not stuck to a diet
and was eating mainly vegetables and fruit for example, mangoes, grapes and
pineapple. She talked about eating two mangoes a week but Mary suggested that
was too much sugar and advised her to reduce the amount of fruit and to eat more
starch. Pam admitted that her glucose levels were high, 10 or 12. She informed
them she still had problems eating late at night and finding that her blood glucose
levels are high in the morning. She said:
I mean I am not good at planning the meals and shopping. I am not very good at it, I
go out and somebody give it to me and I say “This is very nice” but for me to put it
together, my life is filled with so many other things.
Mary suggested that she could buy one of the healthier option meals at one of the
local supermarkets. Each woman in the group offered Pam advice regarding the
quantity and type of food she should be eating. Mary then suggested that she kept a
food diary and recorded what she ate during the day. She informed the group that
she already had a daily record. The women all recalled the size of the portions of
food that they should be aiming for when they had their meal. Pam took the floor
again and discussed how she was no longer making herself the priority. Mary
advised Pam to make more time for herself because she too was important.
Pam continued discussing the problems she had been encountering with her
sisters, so we interjected and changed the conversation to actions that they had
taken in the preceding weeks.
Actions
First of all we thanked Mary for her contribution then each woman gave an update
about their current actions. Jillian discussed further problems with her foot so
requested to see a podiatrist and will now be referred. Marjorie’s problems with her
bowels have persisted, not necessarily linked with her diabetes but could be. She
related these to the group including her frustrations with the GP service and had still
not received a proper diagnosis for her current problem. Vera confessed about the
daily struggles she encountered, some days are better than others. She will
continue to see the physiotherapist for the spasm in her back. Vera had requested
to be referred back to the hospital diabetic service which she had achieved. Bea
informed the group that she had received her yearly check up at the urinary dialysis
clinic and also had her diabetic review. She informed the group that:
All the tests were OK, liver, kidneys, sugar levels and so on. I didn’t have to go back
until a next 6 months. I am only tested once a year. Feelings are OK, don’t get the
pains, I used to when I go walking. I go to the shopping centre and back again.
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Each woman highlighted their actions for the coming weeks until the next session.
Pam identified that she needed a knee replacement so has been informed that she
has to reduce her blood glucose levels. Jillian will follow up the problems with her
foot, Vera is sticking with the physiotherapist, Marjorie is dealing with the
complications she has at the moment. Bea summed up her actions as “doing
everything I am supposed to be doing”.
The following long-term group actions were recorded as:

To attend one of the Guyanese Nursing Association (AGNAP) conferences –
to disseminate findings of the study

Keep the group going as a supportive group for males and females

Each member can start a group, where they live for Guyanese or others who
are diabetic
Reflections: Facilitator’s role
I felt that there was some tension in the group during the first part of this session
devoted for questions. The women tried to manage the situation and to be fairly
empathic towards Pam regarding the current problem with her diet and sisters;
however as the information became even more repetitive, the women eventually
changed their approach thus confronting her regarding the way she was managing
her diet. I just observed the dialogue that was taking place but did not intervene at
that point as I wanted to see how they would manage the situation. It felt
uncomfortable to stop her mid track in what was being said but we only had a
limited amount of time for the session and an external person was present in the
group so we all intervened.
Analysis of the twelfth PAR Group session
Perhaps the group was still in the storming stage if reference is made to Tuckman’s
(1975) model. I attributed some of the intense feeling within the session to Pam
taking the floor again, controlling the session and repeating the same information
about her sisters that the women had heard on many occasions. She was looking
for support. Nevertheless I felt Pam’s contribution captured the complexity of living
with diabetes especially when faced with numerous stressors in your life.
The women asked the diabetic specialist nurse some similar questions that had
been raised in the previous meeting relating to statins and cholesterol levels. It
seemed as if they wanted further clarification. I had already started preparing the
women in the group for the ending of the inquiry as I recognised how much they
relied on the group sessions even though they kept in touch with me and each other
outside of them. We discussed evaluation of the groups and how the women
intended to take things forward.
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Thirteenth Session
This session was held at Jillian’s home (see Table 4 for attendance, p141). We
received apologies from Agnes and Bea who were on holiday. Following another
enjoyable lunch, the conversation commenced about growing older generally.
Growing older with diabetes
Jillian talked about how she had slowed down and gave an example of how cooking
lunch that day took her much longer than anticipated. Pam agreed with her that
everyone had slowed down. Marjorie suggested that:
The thing is we tend to forget and try to do a lot and then it hits you for six, because
I found the other day, and I have problems of my own. I found that by 6.30-7.00
o’clock, I am sat on the sofa; falling off to sleep. I think hey, I’m like an old man. So
I am consciously doing things in the day. So I spread it longer over the day. I don’t
fancy going to sleep at 7-7.30 pm then waking up because I am not sleeping
properly.
Vera carried on the conversation about getting old and referred to programmes on
the television about hospitals and older people’s care homes. Vera reported that:
In hospitals they don’t understand, they haven’t been trained in diabetic things –
like checking pressure, checking sugar levels at the required time. If you are
seriously ill, lots of people have suffered quite badly as a result of that. Those are
the things that bother me. Maybe by the time I get there who knows. I am being very
jaundiced and cynical about the whole thing.
Both Marjorie and Jillian spoke about the relationship they have with their children
who to some extent had adopted a role reversal and were behaving more like a
parent telling them what to do. It made them feel stupid and old.
Pam felt she did not look old like other people but had to accept that she is getting
old and cannot do the things she used to do when she was younger. Vera
discussed the problems of getting old and having to keep injecting herself with
insulin. She said she is running out of space on her body plus the discomfort that
she is experiencing:
It is stiff, the skin gets like bumpy rubbery like the skin on Mars. I can find the odd
spot occasionally but most times it comes up in a lump. Then I have to press it down
or the needle drags. It is not nice and it is not pleasant. I have tried to explain to
them, the case of getting older. It is five injections, now doing four. If I had been 40
years younger, they would do something about it but at this age, they let you waffle
on and just ignore you.
Vera spoke at length about a period of hospitalisation that she had which was a
rather unpleasant experience. Marjorie said it felt like being thrown on the scrap
heap but did not want to be a burden on the society.
We talked about getting older with diabetes and the complications. Marjorie
admitted that:
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The group has made me more aware of the complications because before I knew
about them, but it was like “hey what” you know and now you are aware that there
are certain things that you mustn’t do and the group has helped me immensely and I
know we are coming to the end but as I said to you, I think I would miss it. We still
have a lot to offer each other, not in the way we started. When we started we were
complete novices, on how to manage who was having what and each person has
helped the other person by saying, you know this is what I take, this is what the
doctor said and why don’t you try this. We have helped each other to be more aware
of what is going on. The group has been great.
Jillian remarked how dangerous the condition can be and how it affects all the other
organs. Bea thought that she knew everything about diabetes but when she came to
the group she discovered that:
I didn’t know nothing because I thought I knew everything and I thought I was doing
everything I was supposed to do, but I wasn’t really doing it, so I have learned a lot
and happy to be in the group. I don’t know how I could have thought I knew
everything. I think that when I started nursing, they would tell you about it
(diabetes) and you may have it in the exams, but then all that went away.
Marjorie led this part of the discussion beginning with what she had gained from
attending the group. She said that she knew nothing about diabetes following
diagnosis and only learnt about it when she joined the group. She said “this group
has taught me about diabetes”.
Jillian echoed similar views and stated she had learnt as well, “together as a group
we have become much more aware of what diabetes can do to your body”. The
meeting ended on this positive note and I informed them that the final session for
the inquiry will be in September.
Action
The women brought up an action of staying as a group. I shared some of the
findings and early observations that had emanated from the inquiry so far and
outlined one of them as being ‘Guyanese people love food’. Both Jillian and Vera
said “absolutely”. Pam believed that we had the nicest food. Marjorie confessed she
had managed to walk and spoke enthusiastically about her achievement.
Reflections: Facilitator’s role
I reminded the women at the beginning of the session that we had agreed to devote
the first half to questions for Mary and the second half for more generalised
discussion about actions. I am aware that I have been preparing the women for the
ending of this particular group but also enabling them to think about the type of
group that they might like to hold in the future.
Analysis of the thirteenth PAR Group session
It is obvious that the group has helped the women in developing their understanding
about diabetes judging from the comments that were received. Pam’s repetitive
stories within the group caused some concern however it is unlikely that each
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individual will participate equally in a group situation as it is within groups that
individuals will agree, disagree, argue, debate and challenge the views of each
other. This has certainly taken place in some of these sessions thus creating new
learning experiences for the women when they have had to confront someone in the
group. However when I put the tape on, there was a period of silence for them to
reflect.
Another key issue that emanated from the group is the marginalisation that women
feel as service users because they perceived practitioners/healthcare services as
not interested in them as older women. Ageing brings its own set of problems within
the health care system but ageing, having diabetes and being a member of the BME
community has its own level of complexity which the women found difficult to
untangle. In their discussion they claimed resources were rationed as you get older,
and this could affect the individual’s quality of life.
Women belonging to the same cultural group with common beliefs and values can
be beneficial and is a good explanation why the group has worked for them. It is
important that their work is disseminated as they give an excellent picture of what it
is like to live with diabetes, the trials and tribulations, which I needed to capture
within the inquiry.
With reference to the dynamics in the group, I am not convinced that this group has
gone through Tuckman’s (1975) five stages in a linear way. As a group we got to
the performing stage of Tuckman’s model when the women agreed on producing a
recipe book but it felt that there was an element of storming re-emerging in the
group.
Fourteenth Session: Evaluation
The final group session took place at my house. All six women attended. Agnes had
made a special effort because she had not attended many sessions due to being
abroad for a specific period of time.
Bea commenced the session with much laughter prompting the women to say
something but there was no response. We all waited in silence then decided to
evaluate by identifying the strengths of the group followed by the weaknesses. Bea
reminded the group she had learned a lot from their different experiences. She also
informed the women that she had fallen three times and was concerned as she had
been experiencing similar feelings to when she was first diagnosed with diabetes.
Vera suggested that her blood sugar level may be too low. Bea admitted that she
had been rationing the glucose sticks that she uses to monitor the levels because
the hospital and GP had limited her amount. The women encouraged her to ask for
more sticks.
Bea suggested that:
We should continue once a month at each other’s house. As I said before, I have
learnt a lot from the group and I enjoy it.
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Bea then talked about recent problems she had with her eyes, possibly retinopathy,
a known complication of diabetes. Agnes then summed up what she had gained
from coming to the group. She stated:
I have gained a wealth of knowledge from coming here and I have met some friendly
people and have listened to their problems which has educated me at a certain
stage, because I was diagnosed recently as having diabetes but having coming here,
it doesn’t take old age to have diabetes and I have learnt how to control my eating
habits as well as the value of exercises. I have learnt to relate to the women because
they are very vocal, and they express themselves very carefully and I understand
what they are saying but am – I feel that if the group does not continue, we will fall
back into our armchairs so we need to have the group continuing so we will know
and understand the reason for our diabetes, whether there is any change in our
situation.
Jillian too reminded the women how much she valued the sessions when it came to
that time of the month. Marjorie too responded by saying what she had gained from
coming to the group. She said:
The group make me understand the condition and really take a check on what I
really should have been doing all those years ago. If I had probably been doing it
from the beginning, I would have been in better health than I am now. As far as
whether anything else you could have done, I don’t think so. The group has been
great.
Vera captured what it felt like when she was first diagnosed and how the group has
helped her:
All I can is I thoroughly enjoyed being in the group because when I was diagnosed,
many many years ago, I was sort of isolated. When AM came along and told me
about this group, I literally jumped at it because this was at least finding out or
chatting to people about what is happening to them, sharing with them my
understanding of the condition and my experiences and I am the one who has been
the longest in the group and just taking it from there. I have learnt a lot too. When
you listen to how other people are handling their problems and we have had quite a
few problem solvers more so than others, it helps me as well. It either reassures me
that I am not that badly off or makes me think, well, if such and such a thing can
happen to me, I can understand how you handle it, you know, and so from that point
of view it has been constructive, it has been instructive and I would hope that we can
continue to meet.
Pam summed up what she felt she got out of the group. She said:
I think we all had different things going on and that is the wonderful thing about the
group because no two people are the same. And like Marjorie learnt a lot. I was
pleased the way Marjorie changed within one month. I thought it was incredible
because even I couldn’t do that and I really was very proud of her that she could
achieve that and so I think the wonderful thing about our group is that we are all
different, we are all learning different things as you say we should keep in touch.
The women did not have any suggestions regarding how we could have done things
differently. However I also took the opportunity to share with them what I felt I had
got out of the group. I informed them that I had actually moved away from the
Guyanese community, due to where I lived and worked and had only a few
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Guyanese friends with whom I have remained in contact. This group had brought
me back into a Guyanese community because I recently attended many cultural and
social events. I too was thinking about growing older in this society and what would
happen to me. Vera reinforced the point that the women in group have connected
me to “my people” and Agnes stated “your culture”.
Connecting with your roots
Connecting with your roots was the focus of the next part of the discussion and
some of the women identified how they too reconnected. There are 55 Guyanese
organisations, mainly in London and Southern England. People also reconnect with
Guyanese living abroad on a regular basis through reunions and other social
events.
Sharing information
Vera shared information with the group about the Diabetes UK lecture that she
attended yearly and the need for volunteers to talk to people from the Caribbean
about diabetes. Pam felt that the group should be involved in something like that.
Vera asked if any members of the group wanted to attend. I agreed to go but the
other women said they will inform her later.
Group Action
The women talked about writing a booklet consisting of about two to three pages
about their experiences in the group that they could share with the Guyanese
community. We now had a list of Guyanese organisations that we could disseminate
the information to. The booklet was still in the very early stages however Marjorie
had already written some of the content which she shared with the group. Vera
suggested it should be simple and to the point. The women wanted the booklet to
reflect what they have learnt about diabetes whilst in the group. They all agreed to
send the information to me so I could collate and return to them. Further questions
arose regarding whether to include telephone numbers and how to preserve
anonymity. I suggested that initially I could put my details on it. As there was no
further information the session drew to a close and they all agreed to meet up in
November to review the booklet but to remain in contact by phone.
Reflections: Facilitator’s role
Whilst the women commented positively about their experiences in the group, I also
asked them to respond to things that did not go well and to suggest how the group
could have been improved. I have been charting new territory which has been a
steep learning curve for me and the women. With regard to evaluation of the group
sessions, I came prepared with a list of questions but the women drove the
discussion in the direction that they wanted. This meant that some questions were
ignored and others discussed as part of the conversation. The women were given
space and time to reflect on their experiences of living with diabetes which I felt had
been achieved.
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This was a euphoric session with much laughter as all the women attempted to
evaluate the group experience. Agnes had missed many of the group sessions yet
she admitted that the group was very important to her. In fact she thought that the
information shared was of high quality which she valued. The women were aware
that this was an evaluative session where they were being expected to evaluate
what we had achieved as a group and to discuss their plans for future groups. Their
aim was to continue the group but in a different guise possibly with men. They were
aware that the inquiry was coming to an end but not necessarily their group
sessions. They could carry these on if they wanted to.
They remarked on how much they had changed whilst attending the group and
would like to produce a booklet in order to share their experiences with others. Via
my telephone conversations with them we had talked about producing something
that would capture the women’s experiences of living with Type 2 Diabetes following
their decision not to pursue the recipe book.
I shared some of my feelings with the women by reflecting on how I felt when I
migrated and lived within a different society. Both my supervisors considered this
research is also very much about me finding my place in this society. For example,
the inquiry has made me reflect on my own migration to the UK. The whole issue of
reconnecting with my community has made me think and reflect on this experience
and question my reasons for studying this specific group of women. Perhaps we
had reached Tuckman’s (1975) final stage of adjournment as the purpose had been
fulfilled but rather than sensing insecurity, I felt there was a euphoric feel to this final
session. Perhaps because arrangements were being made to meet again socially,
the women did not feel the group was ending. It was merely entering a different
phase.
Discussion: Fourteen PAR Group Sessions
We held 14 PAR group sessions which six women attended over 18 months. Still in
keeping with the Koch and Kralik’s (2006) look, think and act analysis framework, I
analysed the data that emerged from the groups using initially that framework to
understand the group dynamics that the women engaged in, the personal actions
plus the final group action achieved by them. The cyclical nature of PAR
encouraged them to reflect, learn from each other and from their experiences which
further enhanced their current lives. Reference and application has been made to
Tuckman’s (1975) approach to group dynamics within the sessions. The women
had their own expectations regarding the kind of diabetic service that they are
looking for which was an important issue for all of them. Finally a reflective account
of the facilitator’s role outlines the skills developed and other areas that could be
further enhanced when engaging in future groups. A log of how these were
developed was kept in a reflective journal.
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Looking
As previously mentioned in Chapter 5, “looking” entails gathering information and
building a picture. In this context I needed to assess what story was being created
by the women in the group sessions. The women were hungry for more information
about diabetes even though many of them had had the condition for several years;
they were looking to find out more either from each other, other sources or from a
specialist who attended two sessions. Two members of the group brought in a
range of materials for them to review. Others started to search the internet to find
out more about their condition. They were also looking for a more equitable diabetic
service with similar resources for all. Some of the sessions became educative about
their condition. There was an impetus to change their lifestyles, review their current
eating habits even though they loved food, recognise the physical complications of
diabetes, become more assertive when engaging with health care practitioners,
monitor their glucose levels regularly and share their experiences of living with Type
2 Diabetes with each other.
Thinking/reflecting
The participants were encouraged to think, reflect and interpret their experiences
while in the group setting. These reflections were also interpreted by the researcher
and feedback given to the women. As they reflected, similar issues emerged that
were captured in the previous chapter and resulting constructs for example, the
delay in receiving a diagnosis affected their health, sense of shock that occurred for
some of the women, family history, feeling depressed/anxious, the use of alternative
therapies to manage the condition and the benefits of maintaining Guyanese
connections. Different issues also emerge from these group sessions such as the
need for a more responsive diabetic service that was likened to a well woman clinic
and Guyanese foods may not necessarily be culturally appropriate for them within a
diabetic diet though it connected them with their roots.
Acting
During the action phase of PAR groups, the researcher monitors the actions that the
participants make (Koch & Kralik 2006). From the outset the women worked
collaboratively in the group and tried to maintain their personal actions. There is
evidence from the transcripts of the group sessions that some were starting to take
regular exercise, monitor their glucose levels, make changes to their existing diets
by reducing the amounts they ate, share information relating to diabetes education,
supportive of each other and kept in contact outside of the scheduled sessions. One
woman managed to have her diabetes reviewed after eight years and requested a
referral back to the hospital diabetic service which had been granted. Other women
returned to their respective GP services requesting further investigations and checkups which had been denied. They were all taking alternative therapies even when it
was suggested by the diabetes specialist nurse that they should consult with their
doctor when taking additional substances with prescribed medication.
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The original group action which was the development of a Guyanese recipe book
that would incorporate the Guyanese foods that the women ate was considered to
be inappropriate for their dietary needs. Research carried out by one of the women
identified the high carbohydrate and calorific value in these foods. A later decision
was made not to complete the book as they recognised that they ate a wide variety
of foods. The women agreed to produce a small booklet based on their group
experiences of learning to live with Type 2 Diabetes that could be shared with the
Guyanese community. A crucial part of the PAR process is about reform which in
this context is the production of a booklet that the women will use to reach out to the
Guyanese community to educate them about the condition.
Group Dynamics
In the previous chapter I gave an introduction on group dynamics and how groups
are used within research studies. Reference has been made to two theorists,
Tuckman (1975) and Lewin (1947) who have contributed to my understanding of
how group decisions are made and why power exists in group relationships.
Tuckman (1975, 1996) believed that these stages are necessary in order for a
group to grow, develop and deliver results. In applying the model to the PAR group,
it was a non-linear process as suggested by the literature. We kept reverting back to
the previous stages during the group sessions before we finally reached the
adjourning stage within Tuckman’s model.
In these particular sessions the dynamics were an important issue as the
participants communicated and interacted with each other on two levels, verbal and
non-verbal. It was easy to hear the verbal messages that were being conveyed but
the non-verbal messages can be more subtle so the observer has to be fully aware
of what is taking place when observing the situation. The PAR group worked well
from the beginning as the women seemed to gel. Those who attended were
committed and interested in sharing information with each other and developing a
greater understanding of their long-term condition.
Initially the group seemed to go through the first two stages, forming and storming of
Tuckman’s (1975) model quite quickly. Boundaries were tested and all the women
soon gleaned what was acceptable behaviour in the group. Two of them were
particularly dominant in the group and one member remained quiet but felt included.
As the sessions progressed the other women became more vocal and contributed
to a free flowing discussion. However the storming stage occurred when the two
dominant participants seemed to be vying for a position as leader in the group.
During this stage as relationships develop and tension increases conflict arises.
Both women were articulate and brought in majority of the literature on diabetes
which they willingly shared with the others. Eventually only one of them emerged as
the leader as she was recognised by the others for her expertise which was often
commented on.
One of the principles guiding this inquiry was democracy. Democracy in groups is
another issue that both Dewey and Lewin explored in terms of how this is created
within the group structure. Democracy within this context is linked to styles of
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leadership within the group setting. Lewin (1947) describes three clear styles,
democratic, autocratic and laissez-faire and concluded that there was more
openness and friendliness in democratic groups. I sensed this with the atmosphere
within the group sessions even though there were disagreements and conflicts there
was no hostility or aggression towards each other. The process felt democratic and
participative when I considered Arnstein’s (1969) model of participation. The model
is discussed fully in Chapter 4. Participants showed respect for the emerging leader
who was very knowledgeable about diabetes. Storming stage was overcome as the
women had a project to channel their energy into and to bring about a cohesive
strand to the proceedings. A group identity was being shared as the group
developed a community spirit, connectivity and resistance is overcome. The
norming stage is reached.
Everyone became committed to producing a diabetic recipe book for Guyanese with
Type 2 Diabetes as the action project. Each member agreed to submit a recipe for
the book. This I would describe as the performing stage of Tuckman’s model where
the group has a shared vision but disagreements can still occur which are resolved.
In a subsequent session a suggestion was put forward by the leader of the group
who sought the views of the others whether it was a good idea to continue with the
book. She gave a rationale for this suggestion as she had become aware that her
diet consisted of a variety of foods and not just Guyanese. She therefore shared this
analytical viewpoint with the group who too had arrived at a similar realisation that
Guyanese foods were high in carbohydrates, fat and calorific value which conflicted
with what was required for a diabetic diet. Nevertheless some of the participants
wanted to still produce the book. This announcement caused some tension that
resulted in a storming stage due to mixed views regarding the suggestion being put
forward about the book.
Finally after much debate and discussion, a decision was reached not to pursue the
book any longer. Coupled with this decision, further disagreements took place as
the participants started to show frustration with another member of the group who
kept repeating similar information at each session and had not moved on in terms of
managing her condition. The leader of the group managed the situation by pointing
out to her outside of one of the sessions that she needed to listen more so that the
other women could speak. Kaner et al. (2007) suggest that decision making in
groups is not an easy textbook process with everyone staying on board every step
of the way. It can lead to frustration when decision making is not presented as a
healthy flowing process (Arnstein 1969).
The group settled down again and reverted back to Tuckman’s (1975) norming
stage as they achieved their own personal actions plus a new group action project
was proposed. Agreement was reached by all of them regarding dissemination of
the information following the end of the inquiry. Further suggestions were made
about the group disseminating information to the wider Guyanese community. The
group had achieved Tuckman’s (1975) performing stage and possibly the
adjourning stage as the task has been completed. The PAR group sessions have
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ended and the purpose fulfilled. The women, though, have continued to see each
other socially as a group.
As previously mentioned, Lewin (1947) contributed theoretical information to aid our
understanding of group dynamics. Two terms that he claimed resonated with group
dynamics are interdependence of fate and interdependence of task.
Interdependence of fate did not necessarily occur in this group. The women had a
similar middle class background but contrary to Lewin’s description of the term, the
women’s fate did not depend on the fate of the group. Their personal actions
seemed to be a priority in the wider scheme of things. Conversely the task of
interdependence was more relevant as they had come together as a group and had
decided on a task. Therefore, they were dependent on each other to complete it.
One task was discarded but each member contributed a section for the booklet
which was the other option.
Other factors that Lewin (1947) considered in group dynamics consisted of
feedback and unfreezing, a change theory perspective. Lewin borrowed the term
feedback from electrical engineering but the emphasis here was to give feedback in
the group situation. Lewin believed that participants giving feedback to each other in
a group setting stimulate change in the individual. The participants constantly
provided feedback to each other in the groups regarding the progress they were
making in managing their condition. As a facilitator I also gave feedback during the
sessions on their strengths and afterwards as a summary sheet of what took place
and actions agreed. Unfreezing is another factor that participants use to challenge
values, beliefs and practices in the group situation. This occurred in the group to a
lesser degree but one particular participant was challenged more than the others.
However they all demonstrated a change in behaviour when comments were made
regarding the management of their condition and how this could be further
improved.
I believe the women have gained a wealth of knowledge from each other via the
sharing of information regarding diabetes, listening to each other’s problems and
learning how to manage their eating patterns. They all had a thirst for knowledge
about diabetes which the group helped them to understand how to improve their
self-management strategies and to recognise the complications that were impacting
on their physical health and wellbeing. Even those who had had the condition for
several years for example, found the exchange of information useful and thought
provoking.
When the diabetes specialist nurse was invited to attend the group, they all valued
the two sessions and gained valuable knowledge from the questions asked which
aided their understanding about the condition and helped to eradicate some of the
misinformation that they had acquired over a period time. The women remained a
harmonious group who were willing to collaborate with each other and make
decisions when required to.
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Facilitator’s role
The facilitator’s role was unique to me within this context and I found that this
process required different skills especially as the women in the group were also coresearchers and very vocal. I used my journal to record my reflective thoughts about
my role in the sessions as this is part of the rigour of the research.
The women decided on their homes as the venue and topics for the agenda. I
adopted a mainly listening and observational role thus encouraging the women to
drive the discussion in the group sessions. I also recognised the need for
impartiality, explore any misunderstanding, encourage the women to build on their
strengths and to consider actions to reform their personal lives. I believe that Kaner
et al. (2007) sum up what I tried to do in the group sessions. “The facilitator knows it
is essential to stay impartial, honour all points of view and keep listening so that
each and every group member has confidence that someone understands” (Kaner
et al. 2007:34) .
The norms or rules were used to keep the women on track. We reminded each
other about the norms and as new members joined the group, these were reestablished and recorded. The PAR process gave the women a platform to air their
views about living with Type 2 Diabetes. The group encouraged collaborative
learning, co-operation, personal and mutually agreed actions.
As I reflected on my facilitation skills, perhaps I could have been less direct on
occasions and given the women more encouragement to initiate the discussion in
sessions. Perhaps I could have intervened more when one participant kept
repeating the same issue at each session but I wanted the group to action this
behaviour hence why I remained silent. However a safe environment was created
where the women could privilege their feelings, beliefs, customs and values of what
it meant to be living with Type 2 Diabetes.
I needed to recognise throughout this phase of the study any actions taken by the
women had to be decided by them and not me. I learnt that skill and behaviour as
the group progressed and realised that actions needed to be decided by the group if
they were going to be sustained after the research has been completed. These
thoughts, feelings and viewpoints were recorded in my reflective journal.
In this inquiry where I belong to the same Guyanese culture as the people
interviewed, a major issue in the establishment of rigour is the notion of subjectivity.
The difficulty is that subjectivity can both enable and disable. On the enabling side
subjectivity allowed me to establish my research domain and that made me alert to
traditional, cultural and post-colonial Guyanese orientations held by my participants.
However I needed to be aware that my personal orientations were rooted in the
same cultural background and that could potentially make me blind. I have reflected
on this notion of subjectivity in Chapter 8.
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Conclusion
The use of PAR in these group sessions was to assist the women in understanding
their situation of learning to live with Type 2 Diabetes, the complexity of the longterm condition that can cause an onslaught on their bodies. Thirteen constructs
emerged from the one to one interviews in the previous chapter and 14 PAR group
sessions in this chapter. It is important to mention that not all constructs were
discussed in the same detail in the groups as the women expanded on the issues
that were relevant to them. The emphasis within this chapter was more on the group
process rather than just the constructs. The constructs discussed ranged from the
difficulty in obtaining a diagnosis to the impact that it caused when they eventually
received one even though many of the women were predisposed to diabetes due to
a strong family history. Taking control of their long-term condition meant they
needed to have medical management and self-management knowledge and skills
but medical management was wholly inadequate for some of them. I have
separated the two aspects of management when self-managing because I felt the
women lacked medical knowledge of their chronic condition and this is borne out
from the medical questions that they asked Mary, the diabetes specialist nurse who
provided them with the answers that they failed to obtain from their respective
health care centres. My rationale for bringing Mary into the sessions was due to the
fact that I felt the women were misinformed and I recognised a gap in their
knowledge. It is not surprising how they felt when they had to cope with the
fluctuations of their blood glucose levels although prayer helped them. Many of
them had not had the opportunity to enter into a dialogue with their GPs or diabetes
specialists in order to obtain answers to their questions. Only Agnes had received a
current diabetic package of care. The health system had not met the other women’s
diabetic needs as they were still hungry for medical information even though they
had had the condition for several years.
In managing self, they needed to consider lifestyle changes such as exercise and
healthy eating which improved as the inquiry progressed. The women shared their
innermost thoughts and feelings with each other and developed confidence in a
collaborative environment that was each other’s homes which may have been
conducive to feeling safe and relaxed. I argue that being Guyanese together
accelerated their learning which led to their growth and development and cultural
cohesion.
There were several facilitator dilemmas that concerned me which included the use
of alternative therapies among all the women, the huge portions of Guyanese food
that they ate, one of the participants periodically choosing not to take her medication
anymore, one repeating the same information during the sessions and two
members being dominant and vying for position as a leader in the group. As I
reflected on these dilemmas, I did not take any action while these issues were being
discussed in the sessions however the women took the necessary actions when
they asked the diabetes specialist nurse about alternative therapies, recognised that
they should be eating smaller quantities and not necessarily Guyanese food when
they shared information about quantities of food they should be consuming. We all
confronted the participant who kept repeating the same information and eventually
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one leader emerged who became a trusted and knowledgeable participant.
Please see below Table 5 (p188) that summarises the group constructs and
corresponding exemplar quotes from the participants.
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Table 5: PAR Group constructs and exemplar quotes
Key Constructs
Exemplar quotes
Diagnosis
Jillian described the reaction to the diagnosis. “My reaction was not me now because my
mother had it, my father had it, my sister had it and one of my daughters ……and I thought oh
my God here I go, I thought it was skipping me”.
Complications
“I don’t think there is a lot of research done into the associated aches and pains with being
diabetic. Diabetes is an actual savage onslaught on your immune system. It is never going to be
the same again. It will only get worse. We can never get better”. (Vera)
Sharing information
Vera offered information from the Balance magazine and other sources.
Preoccupation with food
“This is all very spectacular because it is all in colour and it gives you all the information you
need about portion sizes, the carbohydrate content, the protein content and the balance you
should try to achieve……… Obviously you have stick to these rigid portions”.
Pam said “Guyanese liked and ate far too much food”.
“What we need is Guyanese food we can buy and eat. What we need is a calorie count for
Guyanese food ….”
“I started research on calorie count and carbohydrate count, it was surprising how much was
plantain. We will learn about ourselves”. (Marjorie)
Family History
188
Bea highlighted her Indian grandmother had diabetes. “My grandmother came from India. I
think I inherited this diabetes through the genes because I knew about diabetes”.
189
Depressed/feeling low
Being Guyanese
“I am still worried. My diabetes is high for me and I keep checking it. I think I am depressed
with the eyes that hit me so because I don’t know what is causing it. I am not happy with the
state of my blood. I think it gets me depressed and I eat more or eat things that I shouldn’t eat”.
(Pam)
“I think that because we all lived together no matter what race you were, we inter married and
everybody adopted everybody’s meal, culture and everything. We have a very friendly culture”.
(Jillian)
Health Services
Vera summed up what should be provided for people with diabetes. “What we need from what
we have all said if this little group can somehow get across to the medical profession and the
GPs you know if you are diabetic something in my hip could be coming from the diabetic
condition. Treat you as a whole; don’t treat you as you have six different parts in your body”.
Group learning
“I have gained a wealth of knowledge from coming here and I have met some friendly people
and I have listened to their problems which has educated me at a certain stage because I was
diagnosed recently as having diabetes but having coming here…….I have learnt how to control
my eating habits as well as the value of exercises”. (Agnes)
“The group make me understand the condition and really take a check on what I really should
have been doing all those years ago. If I had probably been doing it from the beginning I would
have been in better health”. (Bea)
The next chapter focuses on the discussion of the data that emerged from the one to one interviews and PAR group sessions including the
actions taken by women.
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Chapter 8
Discussion
190
191
In this chapter I will critically discuss the 13 constructs that emerged from one to
one interviews (Chapter 6) and the data from 14 PAR group sessions (Chapter 7).
In Chapter 6 the women told their individual stories of living with Type 2 Diabetes
and then in the PAR groups they collaboratively shared their innermost thoughts
and feelings and realised that they were not alone as they shared many similar
experiences of living with Type 2 Diabetes. Through this process they developed
confidence in the self-management of their condition.
The women had been diagnosed with Type 2 Diabetes many years ago and
provided evidence in their interviews and PAR groups that many of them had
experienced a fragmented, inconsistent and non-responsive service delivery model
that had dire consequences for their health. It also affected the way in which they
inexpertly self-managed their Type 2 Diabetes but this behaviour improved as they
collaborated in the group sessions. Agnes was an exception; she was diagnosed in
more recent years and in receipt of a full barrage of supportive services geared
toward self-management of her diabetes.
Figure 3: The merging of the constructs.
Construct 1 – Diagnosis
Construct 2 – Symptoms
Construct 3 – Family History
Construct 1 - Consequences
of not having a diagnosis
Construct 2 Family history
Construct 4 – Gathering information
Construct 5 – Self Management
(alternative therapies)
Construct 6 – Expected lifestyle changes
Construct 3 –
Self Management
Construct 7 – Complications
Construct 8 – Religion/faith
Construct 12 – Preoccupation with food
Construct 9 – Depression/feeling low
Construct 4 –
Psychological issues
Construct 10 – Stress and diabetes
Construct 11 – Being Guyanese
Construct 12 – Preoccupation with food
Construct 13 - Contact with diaspora
Construct 13 – Contact with the diaspora
Construct 5 – Being
Guyanese
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I reflected on the women’s stories and the PAR group sessions and decided to
merge the constructs discussed in chapter 6 under fewer headings because I
noticed that many of the constructs were interlinked and similar issues arose in the
group sessions. For constructs 1 and 2, the women were exhibiting quite florid
symptoms of Type 2 Diabetes yet there was a delay in diagnosis. I have renamed
construct 1 consequences of not receiving a diagnosis and construct 2 family history
that indicated the genetic pre disposition to the condition. Many of the women had
relatives with Type 2 Diabetes. For revised construct 3, self-management, I have
incorporated constructs 4 to 8 and 12 which showed the strategies the women used
to self-manage and the lifestyle changes they had to accommodate as part of their
daily lives. This revised construct 3 now considers the medical management of the
symptoms of Type 2 Diabetes and management of ‘self’ as the women learned to
take control of their diabetes. Construct 4 is mainly concerned with constructs 9 and
10 which I have renamed psychological issues, for example, depression that can
occur but remain undiagnosed. Construct 5 is associated with being Guyanese that
addresses construct 11, straddles some elements of 12 in terms of preoccupation
with traditional Guyanese food and 13 maintaining contact with the diaspora as part
of a survival strategy. (see Figure 3.)
Additional literature will also be reviewed to strengthen the developing thesis that
Guyanese women living with diabetes and diagnosed many years ago provided
evidence in their stories and in the group sessions that the health care services had
not met their needs. When we met as a group the women’s needs were being met
for the first time.
In the PAR groups one striking development was that the PAR group process
fostered learning about diabetes that had been missing in earlier times post
diagnosis. In the PAR group, the women were able to compare service delivery,
discuss problems they had encountered with their respective GPs and catch up on
the exchange of information. The women worked together collaboratively to bring
about change in their lives. This was assisted by the presence of a diabetes
specialist nurse at two of the PAR sessions. The women thrived in this cultural
environment which I facilitated and their learning about diabetes self-management
accelerated.
Consequences of not receiving a diagnosis
It was a common experience that the women felt powerless in trying to obtain a
diagnosis. They were experiencing symptoms of Type 2 Diabetes such as
dizziness, extreme thirst, blurred vision, feeling tired, drinking copious amounts of
fluids, weight loss and genital itching (DH 2010) yet these warning signs did not
alert the health care practitioners that something was wrong. It took sometime
before they were given a confirmed diagnosis. Delay in being diagnosed was not
uncommon and required the women to be assertive with the health care providers
about their need for care and attention for example, tests, testing equipment,
requests for tablets and/or insulin were common. It seemed that their voices were
not heard: the biomedical approach to their care neglected the psychosocial health
and wellbeing which is discussed later in this chapter. This delay in being
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undiagnosed with Type 2 Diabetes left the women feeling confused, lonely and
ignored by the health care professionals. Most wanted a confirmed diagnosis before
they felt confident in making lifestyle changes (Odette et al. 2004). Parry et al.
(2004) came up with similar findings in their qualitative study which discovered that
many individuals perceived their GP as unwilling to deliver/confirm diagnosis. They
concluded that “being explicit about the diagnosis at first contact may avoid the
problems of feeling in ‘limbo’ or uncertain whether individuals had Type 2 Diabetes”
(Parry et al. 2004:131). Koopman et al. (2004) suggest that one of the reasons that
diabetes may not be diagnosed is due to the fact that the individual’s symptoms are
not always clearly defined or they believe it is the normal part of the ageing process.
It is only when relatives, family and friends observed the individual’s symptoms that
they may encourage them to obtain a diagnosis.
Receiving a diagnosis from the GP confirmed an acceptance that the individual is
genuinely ill and encompassed an explanation for their symptoms of diabetes
(Richardson et al. 2001; Parry et al. 2004). People though may react quite
differently when a diagnosis has been confirmed. This reaction has been likened to
bereavement where the individual can go through a period of disbelief, anger, shock
and denial (Peel et al. 2004). Marjorie stated in her story that she was shocked
when she received the initial diagnosis but then realised “you learn to live with it”.
Jillian who was unaware of what was happening to her, sought help from her GP
after a relative with diabetes observed her weight loss, tested her glucose levels
and highlighted it was raised. Research by Koopman et al. (2004) revealed that
people are unaware of the meaning of their symptoms of diabetes even though they
may be exhibiting them because the symptoms appear to be vague. Individuals may
also choose to ignore their symptoms due to fear that can act as a barrier when
seeking consultation with their GP rather than acknowledge that they have a
condition like Type 2 Diabetes (Koopman et al. 2004). Surprisingly some of the
women were still shocked that they had Type 2 Diabetes even with a known family
history and regular visits to the GP.
Dissatisfaction with the doctor patient relationship was a reoccurring theme in the
women’s stories and PAR group sessions as they sought a diagnosis for their longterm condition. The women shared with me the ongoing communication problems
that existed between them and their GPs following diagnosis. Miscommunication
and feeling ignored were key issues in the doctor patient relationship which May et
al. (2004) state is not new, particularly in the consultations where there may be
disagreement regarding what was said. This disagreement is normally attributed to
poor recall when decisions are made between the two parties (Parkin & Skinner
2003). There is also the assumption that the doctor knows best and is the expert
rather than developing a relationship with the individual based on mutual respect.
The women found this a challenge as they tried to navigate their way through the
diabetic services and to engage in a relationship with their respective GPs
particularly in response to access to appropriate care. They preferred to be seen as
an individual with specific needs rather than as ‘a patient’.
Szczepura (2005) reviewed the research evidence on access to health care by
ethnic minority populations and highlighted that it has not been possible to develop
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a UK overview of disparities in access to the service or to monitor these nationally
because the data collected do not provide sufficiently detailed information. She
believed that “simply providing an equal service cannot ensure access to care for all
people, regardless of their religion, culture or ethnic background. Therefore having
access to services should be relevant, timely and sensitive to the person’s needs
and having the confidence that you will be treated with respect” (Szczepura
2005:142). Bea said in her story and PAR group sessions that she made every
effort to access the GP by contacting him regularly yet it took her a long time before
she was diagnosed with the condition even with a family history.
Family history
A genetic predisposition to developing diabetes was a fairly common construct
among the women in the inquiry. Some women felt that they had a greater
propensity to developing diabetes due to their history because many of their
relatives: siblings, parents, spouses, grandparents and children had the condition.
Some relatives classified it as a ‘touch of sugar’ which is an expression used in the
Caribbean for those with Type 2 Diabetes. In fact six women had close relatives
living with diabetes. On reflection Vera realised in her story that her father and
cousins may have had diabetes but never admitted it. Her father referred to it as a
‘touch of sugar’. The term ‘touch of sugar’ is also used by African Americans and
other minority groups living in the United States. The problem is that as they were
having ‘only a touch of sugar’ implies that diabetes is not taken seriously and may
be regarded as a dangerous euphemism according to Phillips (2006). The condition
is actually serious and requires attention from the health care team.
Even with a family history, certain factors potentially increased the women’s risk of
diabetes such as age, being overweight, having hypertension and abnormal lipid
levels. Majority of the women were overweight and three had hypertension. Jillian
had been taking the weight loss drug Beretta to reduce her weight. Specific studies
(Lindstrom & Tuomilehto 2003; Talmud et al. 2010) have focused on genetic
models/tools to predict risk of Type 2 Diabetes which concluded that parental history
and other factors such as obesity, hypertension, and impaired fasting glucose
findings (but not a large waist line) remained significant predictors (Diabetes UK
2008). I felt the women could be at further risk because Tillin et al. (2012) reported
astonishingly high rates of diabetes found in UK ethnic groups especially those who
are middle aged among South Asian, African and African Caribbean descent when
compared with White Europeans. Researchers suggested that this could possibly
be due to the Western lifestyle that they may have adopted but they remained
unclear why this is happening among these BME groups. Other unknown factors
may have contributed to the cause (Tillin et al. 2012). Surprisingly though diabetes
is also on the increase in Guyana where the women migrated from according to
WHO (2010). The WHO provides evidence that Guyana falls within the low income
countries where diabetes is the third leading cause of death among older Guyanese
women and men (see Chapter 2). Are there other factors contributing to this
increase rather than just lifestyle? Could there be a genetic predisposition due to the
multiracial mix that exists among Guyanese people that is described fully in Chapter
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2? Clearly this issue requires further research and discussion but this is beyond the
scope of this thesis.
In the next section I explore the way in which the women self-managed Type 2
Diabetes by referring to their personal stories and PAR groups. As discussed I have
grouped the constructs together: thirst for information, the use of alternative
therapies, the important role that religion and faith played and management of
lifestyle including complications of this long term condition because they were all
associated with self-management.
Self-Management of Type 2 Diabetes
Self-management as a term is often described as the individual being actively
involved in their treatment process (Elissen et al. (2013). Common assumptions
have been made about the nature of self-management but Stone et al. (2006) and
Khunti et al. (2012) revealed in the literature review, (see Chapter 3) that selfmanagement emphasised compliance/adherence to directions by health care
practitioners where ‘self’ in self-management has been ignored and the person has
been objectified as a patient” (Koch et al. 2004:485). Koch et al. (2004) believed
that “locating the ‘self’ in self-management means acknowledging that many people
living with a chronic condition are already self-determining and their expertise
should be acknowledged” (Koch et al. 2004:484). If not the patient abdicates
responsibility and just follows instructions. This medical model of self-management
was obvious within the group sessions as the women described how it felt in terms
of “balancing what to eat in order to keep their blood glucose levels down”. This
particular model of self-management took priority in their lives. A good example of
this occurred when the majority of the questions that they asked Mary, the diabetic
specialist nurse who attended two PAR group sessions (see Chapter 7) related to
the medical management of their condition. Agnes asked a question about
Metformin, “when to increase or decrease the dosage as it sometimes causes
diarrhoea and getting cramps in fingers and toes”, Vera asked whether “statins
should be taken to reduce cholesterol levels” and Pam enquired “if there was a way
to check your cholesterol levels?” There may be a great deal of information
available to the women but they were unsure how to use it to self-manage their
condition. This was surprising because Koch et al. (2004) suggest that older people
often followed the doctor’s orders and medication was taken as prescribed if not the
patient might be labelled as being non-compliant. Unfortunately traditional models of
diabetes rely mainly on individual compliance (Macaden & Clarke 2010) and less on
the individual’s voice in making decisions about their condition.
Whilst the women focused initially on the medical model of treatment, ‘self’ in selfmanagement was not being acknowledged by the health care practitioners. They
were trying to take control of their diabetes by acquiring information regarding the
condition yet the information available to them was rather limited and fragmented.
The women realised the need for more appropriate information to meet their various
needs as the inquiry progressed. After all they had to make decisions every day of
their lives regarding their diabetes but they perpetuated specific gaps in their
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knowledge, misconceptions and myths about their condition which were highlighted
in the interviews and the group sessions.
Pam referred to a programme which she attended when first diagnosed that she
shared with the group. Agnes who had been more recently diagnosed talked about
the programme available to her but she identified the need for more information
about her prescribed medication. It is important to note from the literature review in
Chapter 3 that the Expert Patients Programme emerged in UK health policy (DH
2001; Donaldson 2003). It encouraged self-management education with access to
information about diabetes and empowerment in order for individuals to successfully
self-manage long-term conditions. Further nationally supported programmes of
structured patient education, DAFNE (Dose Adjustment for Normal Eating) normally
for those who have Type 1 Diabetes and on insulin and DESMOND, a course which
lasts for one full day or two half days (Cradock 2005) for those newly diagnosed
with Type 2 Diabetes were provided (see Chapter 3).
Knowledge and information are important in diabetes care because they help the
individual to gain control over their lives. Only three women attended the Expert
Patients Programme and shared the information with us yet they were still eager for
more information. Considering that these programmes are widely available, it is
surprising that some of the women had never attended any of them. Perhaps the
women had never been encouraged by their respective health care teams yet there
was an expectation when DESMOND was first developed that it would be a
pathway of care for people throughout their lifetime journey with diabetes.
Unfortunately some of the women developed diabetes before these programmes
were implemented and only Pam, Agnes and Bea remembered attending a
programme. Pam still had the information whereas the other two women did not
remember what they had been taught. Stone et al. (2006) suggest that programmes
such as DESMOND have not necessarily met the needs of BME groups as these
types of educational approaches to diabetes need to be more collaborative and
relevant for each respective community. Another problem highlighted with the
DESMOND programme is that it does not cater for those with ongoing diabetes. I
argue that a more collaborative and empowered approach to diabetes management
with an emphasis on partnership working with the health care practitioners
(Anderson & Funnell 2000; Thomas 2004) would have improved the outcomes for
the women.
The women were self-managing as they drew on their own belief systems to
manage and take control of their diabetes. It is recognised that when migrants come
to a foreign country they bring their beliefs, values, and practices that they may hold
about their respective cultures (Hjelm et al. 1998). By culture, I mean the
characteristics of a particular group of people, defined by their language, religion,
cuisine, social habits, music (Live Science 2012), or “a set of guidelines that an
individual inherits as a member of that society that tells them how to view the world”
(Helman 2007:2).
Individuals bring these practices and guidelines with them even though they may
lack awareness of them or the impact these can have on their lives within the host
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country. Migrant communities may hold different discourses and understanding of
their health and practices held by the wider population (Hjelm et al. 1998).
Individuals may be reluctant to reveal details of their beliefs unless they have been
specifically requested to provide this information. Responding to migrants’ beliefs
and cultural practices need to be considered when they present with a long-term
condition as these beliefs can vary from believing in the supernatural and the power
of God to finding explanations for changes in their bodily processes (Scott 1998;
Helman 2007). As previously mentioned in Chapter 2, Guyanese migrants may
have had their beliefs when they migrated on the use of traditional remedies or CAM
when managing their episodes of illness.
All the women reported their beliefs in alternative therapies especially herbal
medicine but had not necessarily shared these beliefs with the health care
practitioners. They genuinely believed that alternative therapies could help them to
take control of their condition by reducing their glucose levels and dosage of oral
hypoglycaemic agents to maintain their wellbeing. However it could be perceived
that quite the reverse was happening as the diabetes seemed to be taking control of
them. The women were still experiencing high blood glucose levels. Their
experiences of self-managing their condition varied greatly within the group.
These women are from a particular BME community that has a history of using
herbal medicines as part of the Guyanese health care delivery system as discussed
in Chapter 2. Therefore it is not uncommon in the UK or Guyana to drink particular
herbal preparations and vegetables such as karela and okra which can be drunk as
tea when unwell. (Scott 1998; Hunt et al. 2000; Poss et al. 2003; Manya et al.
2012) reported similar findings as this inquiry regarding the use of complementary
therapies among their BME participants in England and internationally. The
participants in their studies used herbs and other remedies such as bitters, fresh
garlic and garlic tablets with the purpose of controlling their blood sugar alongside
their biomedical treatments. This is associated with their beliefs about herbs either
having curative properties which can reduce their glucose levels or improve their
quality of life. The use of karela or bitter melon is a common supplement that the
women in this inquiry took but there seems to be limited evidence regarding this
vegetable. Yeh et al. (2003) conducted a systematic review of herbs and dietary
supplements for glycaemic control in diabetes. Studies on karela - bitter melon or
Momordica Charantia - grown in tropical areas including India, South America and
Africa, were part of this review. They concluded that there is still insufficient
evidence to draw definitive conclusions about the efficacy of individual herbs and
supplements for diabetes: however they appear to be generally safe. Yeh et al.
(2003:1286) referred to two specific controlled short-term metabolic trials on karela
with individuals with Type 2 Diabetes which “reported acute effects on the blood
glucose with Momordica Charantia fruit juice as well as subcutaneous vegetable
insulin extract. Yeh et al. (2003) also referred to two other small, uncontrolled openlabel trials in their review and reported positive effects on glycaemic control after
long term use. No adverse effects were reported from these trials. However they felt
further information in RCTs is needed.
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The women did not necessarily partake in alternative therapies that consisted of
very different medical systems such Ayurvedic medicine and traditional Chinese
medicine. The National Library for Health (NLH) (2005) suggests that these systems
provide alternative medical systems to Western biomedicine and include in their
body of knowledge diagnostic systems and treatments for the full range of
conditions that impact on health and wellbeing throughout the world.
Religious beliefs also played an important role in the women’s lives. The majority
were Catholic with two Buddhists who prayed and chanted daily. Two international
studies have focused specifically on religion, spirituality and faith and its link with
diabetes. Newlin et al. (2008) believed that although religion and spirituality are
prominent in the lives of BME women with Type 2 Diabetes, there is limited
research on the relationships with religion and spirituality to glycaemic control in
their study population. However they discovered that religion and spirituality should
be addressed in diabetes care to improve glycaemic control (Newlin et al. 2008).
Abdoli et al. (2011) researched stories of Iranian people with diabetes and
concluded that religion, faith and empowerment were linked together therefore
facilitators needed to understand the importance of cultural and religious beliefs in
order to empower Iranian people to take control of their illness.
The women experienced several complications associated with diabetes which
varied from heart disease and strokes to the development of nerve damage, kidney
disease and foot problems. These complications are similar to the ones that Turner
(1998) discovered in the UKPD study. Several of the women also reported
complications possibly as a result of hypoglycaemic episodes. Hypoglycaemia may
be caused by too much or incorrectly timed insulin or oral diabetic medication, too
much or incorrectly timed exercise or not enough food, specifically glucose
containing carbohydrates and can vary from person to person (Hill 2011).
Maintaining glycaemic control was important in preventing complications such as
retinopathy, neuropathy, nephropathy and the risk of cardiovascular disease (Sutton
& Chapman – Novakofski 2011). The reports from the women suggest that they
were not fully cognisant of these facts and that their self-management of diabetes
was less than adequate. Or perhaps it was due to the progression of their disease.
We can rely only on stories told and information shared in the groups. Studies by
Philip et al. (2009) and Amiel et al. (2008) on hypoglycaemic episodes concur with
the women’s experiences of hypoglycaemic episodes and risks of complications.
Hypoglycaemia is a serious side effect of diabetes treatment that can have
devastating effects on the body therefore the women needed to be made aware of
the symptoms and how to manage this effectively.
During the period of the inquiry all the women had had to make significant changes
in their lives since they were diagnosed with diabetes. They recognised that lifestyle
played a huge role in managing their long-term condition however readiness meant
disengaging from certain habits and behaviours. Huge attempts were made to
change behaviour and lifestyles. The motivation was present among them as they
faced many obstacles but learning from each other through sharing of information
and reflecting on their experiences within the group sessions enabled the women to
start thinking about implementing significant changes in their lives. The learning that
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took place is discussed later in the chapter. In the meanwhile their aim was
remaining healthy whilst trying to live with diabetes.
Health and migration is not a new issue for the women. A growing body of research
has focused on this topic. Lassetter and Callister (2009) conducted an extensive
literature review on the impact on the health of voluntary migrants in Western
societies. They reviewed a range of studies but adhered to a specific criterion that
ruled out refugees who may have fled their countries for different reasons. They
included migrants who may have left their homelands voluntarily. By voluntary
migration, Lassetter and Callister (2009) meant those individuals who were willing to
cross a cultural, geographic or political boundary with the intention of a substantial
or permanent stay. Following the physical relocation, Lassetter and Callister (2009)
believed that voluntary migrants often experience life transitions such as family role
modifications, occupational and socio economic changes and cultural and social
network alterations.
Many transitions had already taken place in the women’s lives; migration being the
biggest one but coming to terms with diabetes and self-managing has been an
equal challenge for them. Transition as a process has been the subject of study
across several disciplines that include rituals, life span development, life stages and
bereavement. Meleis (2011) described transition as a process triggered by change
that is essentially positive but can have a negative effect on the individual as they
move from one country to another. These movements “can put people at risk of
illness, render them more vulnerable to stress and may profoundly influence health
care as they cope and adjust to their new environment” (Meleis 2011:1). In terms of
illness, transition may not be as easy as described because it depends on how the
individual responds to the stage they are at or whether they have the desire to move
on. Kralik’s (2002) study revealed the difficulties of moving on with diabetes as it
cannot be assumed that everyone moves on; some of the participants living with
diabetes in her study ignored self-management and did not accept their long-term
condition until complications were evident. However I believe that the women having
adapted to change as a result of migration, had made huge attempts at moving on
and learnt skills that could be applied to living with Type 2 Diabetes but managing
the condition remained a challenge for them.
Moreover there were specific problems that the women experienced as they learned
to live with diabetes; for example, physical disabilities that affected their mobility
therefore they were not able to exercise or walk very far resulting in them becoming
housebound. Access to the relevant health care services proved to be difficult for
them as they explored these issues in the group sessions, for example getting
follow up care for their diabetes from their GPs; Vera had not been reviewed for
eight years. The study by Hall et al. (2003) suggested that health practitioners need
to understand the various obstacles that individuals face when trying to make a
behaviour change. Changing their lifestyle was initially achieved with limited
success but the women showed tremendous improvement in the group sessions
with support from each other and made specific lifestyle changes in terms of diet
and exercise.
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As the inquiry progressed, the women modified their diets, took more regular
exercise, kept a check on their glucose levels and eventually insisted on regular
check-ups from their GPs. For example, they were surprised when they saw the
portion sizes of food that they should be eating. They reflected on the larger
quantities of food high in fats and carbohydrates that they needed to avoid. In the
group sessions they shared information regarding types of food they should be
eating, made great attempts to modify this but recognised the dilemma when faced
with their favourite Guyanese foods. Studies by Brown et al. (2007) and Scott
(1998) highlighted that African Caribbean participants preferred and ate a diet of
traditional Caribbean food and Chowdhury et al. (2000) who studied food beliefs
among British Bangladeshis with diabetes produced similar findings regarding food
choices which did not necessarily incorporate many Western foods. Chowdhury et
al. (2000) discovered that their participants preferred quantities of Bangladeshi
foods; meat and traditional sweets. Foods were not classified or selected in terms of
protein, carbohydrate but within their own cultural classification. They suggest that
dietary advice should reflect ethnic customs and the different cultural meaning of
particular foods while also acknowledging the individual’s ability to exercise choice
(Chowdhury et al. 2000).
However the women in this inquiry developed knowledge and understanding that
their preferred Guyanese diet may not necessarily be appropriate for their needs.
They displayed a readiness to change their cultural diet to a more varied one which
resulted in a change in their behaviour. This occurred as a result of the collaborative
interactions and support offered to each other in the PAR groups.
To summarise, I believe that the women took alternative therapies to adopt a more
holistic approach to manage their Type 2 Diabetes as they considered that other
aspects of their lives were being neglected by the biomedical model of treatment for
their condition. Whilst the biomedical model is useful for treating diabetes as it can
develop an individual’s understanding regarding what has gone wrong with the
physical body and appropriate treatment provided, it fails to consider other aspects
of an individual’s thinking and way of life that can impact on a person’s wellbeing.
Learning to live with diabetes and its many complications caused the women to
experience variations in mood and feeling depressed. This variation in mood is a
recognised feature of Type 2 Diabetes which warrants further discussion in the next
section.
Psychological Issues
Complaints of feeling depressed or just feeling low was a common feature for the
women in the inquiry although this was not often vocalised as depression but rather
as feelings of loss and sadness or a “low unexplained feeling” were some of the
words used by one woman. However none of the women had seen their GPs to
gain a firm diagnosis. They were merely describing how they felt. In order to be
given a diagnosis the women needed to be screened for depression. Research
studies regarding emotional and psychological conditions in BME groups in the UK
have been scarce but more recent studies used screening tools to measure
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depression (Lloyd et al. 2005; Roy et al. 2012; Lloyd et al. 2012) in those with
diabetes.
Studies by (Anderson et al. (2001; Kumar et al. 2009; Gendelman et al. 2009) have
shown that there may be a link with depression and diabetes but it is still debateable
whether depression increases the risk of diabetes or diabetes increases the risk of
depression, especially when depression can be unrecognised, is under reported
and not treated. Prevalence of depression in people with diabetes is significantly
higher than the general population, as with people with diabetes are two to three
times more likely to be depressed than their non-diabetic counterparts (Lloyd 2010;
Pouwer et al. 2010).
The physical symptoms of diabetes once diagnosed tend to be prioritised by the GP
but recognising and managing psychological conditions such as depression is
difficult because some of the symptoms experienced in depression can overlap with
some of diabetes especially somatic ones. These somatic symptoms are for
example unexplained physical pain, lack of energy, sleep disturbance and appetite
changes which individuals may not recognise as depressive symptoms or lack
confidence in reporting (Katon et al. 2010).
Stress and anxiety are two other psychological issues that the women experienced.
Gilbody et al. (2006) found similar findings as this inquiry in cross-sectional surveys
of depression. People also experience stress when trying to cope with Type 2
Diabetes. Stress can affect the individual’s blood sugar levels leading to an increase
in them. The women in this inquiry experienced stress too as highlighted by Gilbody
et al. (2006) but they wondered if stress caused their diabetes. They commented on
whether stress associated with their different jobs could have been a trigger for their
condition. Eriksson et al.’s (2013) recent study highlighted that work stress may
contribute to Type 2 Diabetes particularly in women. However the researchers were
unsure whether it was due mainly to the work situation or to a combination of stress
at work and at home. Stress at work was identified by Eriksson et al. (2013) as a
risk factor of which GPs should be aware. One of the women acknowledged that
she had made a serious attempt to lead a healthy life yet she developed diabetes.
Therefore she felt “stress may have been one of the triggers for her long-term
condition. Pouwer et al. (2010) suggested that emotional stress plays a role in the
cause of diabetes but failed to identify if work stress did. Das-Munshi et al. (2007)
discovered that many people with diabetes experience generalised anxiety or
anxiety that related to specific aspects of the condition such as diabetes.
As the women talked about their psychological problems within the group sessions,
they felt listened to and appreciated by the group as support was offered to each
other during the inquiry and afterwards as they continued to meet on a fairly regular
basis. They have also kept in contact with me and each other by telephone. A quote
by one of the women summed up how the women felt as a group: “as Guyanese
living in England we tend to stick together” and offer support when it is needed.
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Being Guyanese
The women spoke with pride about their home country and what it was like to be
Guyanese in the inquiry. They all missed their country, the sun and way of life,
friends and lovely homes. It is important to remember that people romanticise about
their earlier experiences but these were good memories. Although they had left
Guyana many years ago, they retained their identity as they grappled with living in
the UK with Type 2 Diabetes. They admitted in the group sessions that they loved
their traditional food and maintained cultural cohesion as they stayed connected
with the Guyanese diaspora within the UK and overseas.
As previously mentioned, the women had experienced a reversal of class when they
migrated to the UK and for the first time experienced themselves as women from a
BME community. I am particularly aware of the struggles some of them faced when
they came in the 1950s and 1960s especially Bea and Vera who spoke openly
about their experiences in the group sessions. As Bea said “One notice on the door
said coloured people and dogs were not welcome”. Others found it difficult to cope
with life in the UK even though they had acquired very responsible positions. Vera
talked about the problems she encountered at work and said “I could have put my
coat on and walked out and never looked back, but I kept at it”. Bea discussed the
racism that she faced as a midwife but said that she and her friend were trail blazers
in midwifery as they were the first ‘coloured’ midwives to visit English people in their
homes to deliver babies. They felt it was important to know your place in the social
structure and the difficulties experienced if you tried to move away from that
structure. Back (2005) postulates that racism is normally defined as a form of spatial
and territorial form of power that aims to secure a particular territory which the other
claim as their own. Back (2005) claims people develop a map of belonging in order
to make that territory their home even though risks are involved as they cross
boundaries. Being ‘Black’ in a white society signifies only ‘whiteness’ according to
(Alleyne 2002) as Black people aim to seek recognition of their value and dignity
and oppose racial stereotypes. These women had to learn how to transcend racism
in those early days which is another possible explanation why their cultural practices
were so important to them and offer them emancipatory possibilities beyond racism
(Alleyne 2002).
Most of the stories told in the group sessions related to the preoccupation of food
and their relationship with Guyanese food which I felt gave the women a sense of
identity. It seemed hard to give up. In Chapter 2, the various ethnic foods are
described in some detail but not all the foods were available to them. They talked
about these foods and claimed moderations in quantity and frequency but it was
foremost in their minds. Changing their lifestyle and their diet appeared to be a huge
challenge to them. The food though gave them a group identity within this context
and to some extent preserved their cultural roots and heritage (Liburd 2003).
When considering food within a cultural context, anthropologists have given
explanations as to why people eat certain foods within their culture which either
gives them a group or individual identity. Food is used to either unite members in a
group or to distinguish them from other groups. Liburd (2003) believe that dietary
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practices are deeply rooted in culture and claims that anthropologists have long
recognised that food choices and modes of eating reflect many symbolic, affective,
familial and gender specific associations. In her study on African-American women
she suggested the women found modifying their patterns particularly challenging in
light of their ritualised nature of eating and food selection and the meanings
encoded in foods. Liburd (2003) proposes that health care providers need to
understand the historical and social shaping of food patterns in order to work in
partnership with people with Type 2 Diabetes. This way of working should help to
shift cultural norms towards healthy eating. It is therefore easy to understand how
the link between society and food, and thus food and societal identity becomes
important in diasporas in general and in the lives of these women in particular as
they sought comfort in each other’s company and enjoyed their traditional foods.
Studies by (Brown et al. 2007 and Scott 1998; 2001) captured some of the similar
issues as this inquiry. Brown et al. (2007:464) discovered that their African
Caribbean “participants found it difficult to incorporate dietary advice when treating
diabetes with their traditional diet and doubted the advice that was at odds with
beliefs about natural foods being wholesome and good for you”. Many of the
participants in these studies felt that health professionals did not take dietary
preferences into account when giving advice and they believed that it would take
three generations before African Caribbean people would change their eating
habits. Scott’s (1998; 2001) studies also emphasised the need for health
professionals to develop more awareness of West Indian food culture so that they
could influence their patients’ dietary patterns. They needed to learn more about
BME traditional foods so that when healthy eating advice is offered, it is culturespecific.
Contact with the Guyanese Diaspora
Maintaining contact with the Guyanese diaspora was an important finding in this
inquiry as the women developed profound loyalty and found support from each
other when trying to live with their diabetes. They travelled great distances and
made multiple journeys within the UK and abroad to keep in touch with friends and
family. Much of this was linked to reunions and national events within the diaspora
on a local and international basis. The reunions created a space for Guyanese to
meet long lost friends and to recall memories of living in Guyana. Trotz (2006) drew
on two examples of Caribbean/Guyanese communities in Toronto and New York
which reflected a similar finding. In her article, she argued that people from
Caribbean communities made meaningful connections across borders. She referred
to the “Last Lap Lime”, a known Guyanese event that took place yearly in Toronto.
The second example was a regular charter bus service that took Caribbean people
to and from New York and Toronto. Evidence suggests that Guyana is a country
that has more Guyanese expatriates than residents (Trotz 2006). Therefore it is not
surprising that so many overseas organisations exist for this displaced national
community where supportive connections are an important part of Guyanese
lifestyle.
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Many Guyanese have maintained active relationships with each other in order to
connect and recapture memories and experiences of times past. Trotz (2006:55)
believed these “interactions raise issues of nostalgia that sentimentalizes memory
among diasporic Guyanese but in ways that obscured the complex and uneven
practices through which identifications with Guyana and with others ‘like us’ are
made”. Trotz (2006:56) further questions whether “we need to consider the kinds of
imaginative geographies that are called on by those who do not regularly return to
their homeland” but feel the need to maintain links regularly with those from other
diasporic places. Further research is needed to explore our understanding of the
social networks that sustain people across time and place including the availability
and usage of technology driven social media.
Reflection on the inquiry
For the findings of this inquiry to be meaningful, I need to reflect on the process that
I have undertaken as I engaged with this PAR inquiry. I am aware that coming from
a similar background as the women and having similar beliefs and values, I may
have taken for granted some of the information shared, strengths that the women
acquired in managing their Type 2 Diabetes and the support offered to each other in
bringing about changes in their lifestyles. It is only following a supervision session
that my supervisor reminded me how much I had taken for granted in the inquiry so
I had to reconsider how these may have influenced my involvement in this inquiry.
Researcher influence
In this PAR inquiry I shared a cultural background with participants. Maintaining a
reflective journal is part of the methodology which allowed me to record my
observations. I fully endorsed the points raised by Kelly and Simpson (2001) about
the importance of developing skills and training when conducting action research
and the need for collaboration, negotiation and assertiveness when using this
approach. As a PAR researcher I was guided and mentored by my supervisors
during the apprenticeship phase as I developed collaborative and facilitative skills. I
acted as a catalyst to assist participants to define their concerns and support them
as they found solutions. PAR involved learning to listen and to hear the voices of the
participants rather than judging them. I also developed skills in building sustainable
relationships because it is through the building of these relationships that individuals
can be facilitated to make changes in their lives. Building relationships took time to
create a flourishing environment for the participants to feel confident to make those
changes.
In the effort to establish rigour of this inquiry I wrote about the way in which I
became aware of and dealt with my prejudice or bias. In my journal I describe this
as my ‘subjectivity’. I recognise that subjectivity can either enable or disable the
research process. On the enabling side subjectivity allowed me to establish my
research domain and that alerted me to our shared Guyanese/English background
that had the potential to influence data generation and analysis during the research
process. I was aware that my personal orientations were rooted in the same cultural
background and that could potentially make me blind to difference. Naively like my
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female participants, I originally made claims that Guyanese were happy human
beings, who are compassionate and gregarious, keen on family life and engage in
social activities with friends. Notwithstanding that I feel happy when I am amongst
my Guyanese kin, I recognise that this observation resembles stereotyping and not
everyone in the group felt the golden glow of kinship. In the discussion on being
Guyanese, Vera admitted that she never gave it a thought. Bea said it gave her
freedom; she felt it meant that she could arrive as an unannounced visitor.
Nevertheless I learned to question my personal orientations, test my prejudices,
examine my biases as I realised these could potentially make me blind. I was aware
of how it felt to be from a BME community living in England, fighting to have my
personal experiences heard. Similarly, participants had not had a voice; they had
not been heard.
As a result, I claim it is impossible to be neutral; I believe that we bring our
assumptions, values and interests to all research situations. I gradually became
more aware about the influences on my inquiry. Consequently I had to monitor my
subjectivity in my daily journal. As a PAR researcher I reflected continuously on how
my own interests, values and perceptions had the potential to obscure the research
process. As PAR has both participatory and collaborative aspects, it emphasised
the importance of personal experience and of acknowledging the subjectivity of the
participants and the researcher. I considered my response to the issues raised in
the interviews and PAR groups about racist experiences encountered. How the
participants transcended these experiences were not always recorded. I reflected
on why these experiences were shared with me. Was an assumption being made
that as I was from the same BME community and background I was in a better
position to understand their situation?
I drew on the work of Schurr and Segebart (2012) to summarise how my feminist
leanings, post colonialism concerns and PAR have impacted on this inquiry. On
reflection in Chapter 4, I argued that I have drawn on my feminist background to
inform this inquiry by giving voice to Guyanese women from a BME community who
for the first time have been given time and space to tell their stories of living with
Type 2 Diabetes and have their voices heard which are reflected in Chapters 5 and
6. Feminist researchers (Reinharz 1992; Wilkinson 1996) have been critical of male
dominated knowledge production and argue for a participatory relationship with
female participants that are considered to be a good way to find out about
individuals’ lives. Schurr and Segebart (2012) postulate that PAR responds to
feminist and post-colonial claims of decolonisation by breaking down hierarchies of
knowledge production that celebrate and are grounded in the daily experiences of
women’s lives. I too want to celebrate what we have achieved together as a group
of Guyanese women as the group had given the women confidence to appraise and
review how they lived with their long-term condition.
Theoretical framework
The theoretical framework underpinning this thesis is the confrontation of the taken
for granted meanings of culture, ethnicity and identity which resulted in the women
in the PAR group and myself becoming empowered through cultural identity. The
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work in the PAR group facilitated in my PhD ended with the construction of a theory
of togetherness as empowerment in a group of migrant women.
When I first started to think about Guyanese culture I considered the economic
reasons for Guyanese migration to the UK. I used the term culture narrowly but I
later understood that the term culture has multiple meanings. For example, in the
context chapter I write that the Guyanese culture reflects the influence of indigenous
Amerindians merged with several centuries of British, Chinese, African, Portuguese
and Dutch colonial infiltrations. When I first approached the term culture I saw it as a
community sharing a common space and history. I understood culture to be a
system for perceiving, believing, acting and evaluating. Despite our various
backgrounds, the women tended to insist on a Guyanese culture as being separate
and distinctive. Authors like Helman (2007:2) describe culture as “an inherited lens
through which the individual perceives and understands the world that he inhabits
and learns how to live within”. This definition was plausible originally but on further
reflection I am not satisfied that culture is exclusively heritage. I claimed Guyanese
culture was unique and I have since revised my understanding. I now hold the
position that we cannot deny the persisting continuities of long traditions and cultural
geographies, but to insist on cultural separation and distinctiveness based on
separation does not reflect the migrant’s experiences of being from one culture and
living in another.
This tension between being from one culture and living in another revealed itself in
the women’s sharing ‘culture’ which predominantly pertained to sharing memories
when growing up and the food eaten. The women were lyrical about pepper pot,
eddoes, fried chicken, garlic pork and black cake. Conversations in the PAR groups
made sure that their homeland memories were not annulled; instead they were
glorified. Later my understandings of the importance of food were validated. In the
group, fond memories enhanced a sense of belonging and at risk of stereotyping, a
belief that food in the Guyanese culture appeared to mark togetherness when
socialising. Being diagnosed with diabetes meant the cultural importance was
diminished through the necessary preoccupation with food that being diabetic
demanded. For example, reading food labels is one of the constructs that emerged
from the women’s stories which suggested a loosening of cultural meanings
attached to food and locating food within the dominant food culture.
Another way in which the women became aware of their cultural shifting between
the Guyanese culture and the UK culture, was in their talk of relatives ‘back home’
having a ‘touch of sugar’. We heard from the groups that how to manage ‘sugar’
was accomplished by ignoring the symptoms. Diabetes management was laissezfaire, without the need for health advice or medical restrictions. Although we cannot
deny the persisting continuities of tradition, the women recognised that while these
beliefs had currency in previous generations, a ‘touch of sugar’ was an ‘Old Wives’
Tale’. The women began to question diabetes mismanagement of their ancestors;
after all they had lived in England for many years. Participants, well educated,
middle class women were no longer able to accept spurious truths of Guyanese
‘culture’ when it came to diabetes. I argue that what was viewed as unique,
separate or distinctive about their culture appeared to be silently eroding their
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health. I say silently because the women had absorbed the questioning culture of
the English ‘other’. This shift in awareness of their cultural positioning brought on by
their diabetes meant making connections between a Guyanese past and an English
future, becoming bicultural.
Along with the women’s shifting understandings of their cultural positioning, my use
of the terms ethnicity and self-identity shifted during the course of this inquiry.
Kelleher (1996) summarises the importance in continuing the use of terms ‘ethnicity’
and ‘culture’ in health research. He believed that it does not entirely give a complete
explanation of the behaviour of that ethnic group that is being studied but indicates
how individuals respond to illness. Kelleher (1996) sees construction of ethnicity as
a structure of relevance and a process that individuals engage in in order to give
meaning to their experiences in life and argues that people selectively draw on
elements in the culture of their group to help them manage the situations they face.
In recognising the importance of ethnicity and culture in people’s lives, you are less
likely to deny that the experiences of racism are real and threatening and that life
chances are not equally distributed. Kelleher (1996) proposes that people find a
sense of support as part of a community, real or imagined and it is that community
that gives them a sense of belonging and a basis for an identity.
However, sharing a common Guyanese background was conducive to
understanding identity and contributed to what I refer to as cultural cohesion. Initially
it was important to share their common background stories as it linked the women;
however group discussion that had focused on glorification of sunny Guyana in
1960s prior to migration became less dominant after 12 months of group sessions.
Being with other Guyanese women was a strong motivation. The women rarely
missed a chance to meet together. We heard that making connection with other
Guyanese people living elsewhere in the world was important. This group could
afford to travel; few women hesitated to network with friends and family living in
Canada, USA and ‘home’. Most had returned to Guyana on several occasions.
Travelling regularly to meet with other Guyanese was a powerful impetus; perhaps it
made living in ‘cold’ England bearable.
Earlier (in chapter 2) I talked about ‘being’ Guyanese and that the women had
adopted various meanings of what ‘being’ meant to them. In our frequent sessions
at the women’s homes including mine, there appeared to be a palpable sense of
belonging in the group. We acknowledged each other and this seemed to
strengthen our self-esteem. I believe that bonding was immediate because we
shared a common if somewhat privileged Guyanese background. We were
middleclass (Savage et al 2013), middle aged and well educated. As a BME group,
we are often confused with our West Indies / Caribbean cousins, but we all spoke
English at ‘home’. On arrival in England in the 1950s, 1960s and 1970s we
remembered our innocence and our taken for granted meanings about the world
and our place in it. In the early 1960s we recalled the sign on rental accommodation
‘no dogs or blacks allowed’ because prior to arriving in England we had not
encountered colour to be a feature for categorisation and / or discrimination. We
learned from each other. We wondered whether the delay in being diagnosed with
diabetes was a consequence of being the ‘other’. Did we imagine it or did we
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experience discrimination in health care delivery? In the group we talked about the
horror of racism having the power to disrupt a person's life. Yet were we different?
Our multicultural colonial forebears destined that we were women from BME
communities, yet our outward appearance varied enormously. We did not share skin
colour hues, body size and shape. Living with a chronic illness had brought us
together but we rejected the label ‘diabetic’. We were more than these socially
constructed categories. I agree with (Phoenix 2002) that identities like age, gender
or race are fixed, other identities reflecting personal qualities are a matter of
construction during an interaction. Identity is a dynamic process that evolves from
an ongoing interaction between the individual and her social environment. I concur
with Phoenix (2002) who believes identity is constructed through social relations
including language, and our interactions with other people. In our case we continued
our comfortable lives and mixed with people of similar middle class
backgrounds. As became evident in this group, I believe that we embody multiple
identities that shift and change as we influence and are influenced by our
circumstances, our learning and social contexts. The group’s social context became
a fertile bed for learning. Group cohesion and working together to improve our lives
are two of the most important findings. One identifying factor was I did not share
diabetes with the women but the group had reconnected me with the Guyanese
community which I had lost contact with.
I have tentatively used the term bicultural competence because they are new terms
for consideration. It makes sense when I think about the way in which we straddle
two cultures whilst living in one. Bicultural competence possibly occurs when
individuals develop the values, norms and beliefs of two countries so that they can
function in both societies. Alongside the women I readily identify as bicultural and
believe I am competent in both.
As Guyanese/English women we may be able to accept a bicultural identity;
however we are constantly confronted by a literature that suggests that we express
our ethnicity / identity through our food choices. There is a large literature around
the complex relationships with food, culture, and society from numerous disciplines
in the humanities and social sciences. I have referred to some studies in the
literature review (Chapter 3) but it is beyond the scope of this text to dwell with
cross-cultural perspectives, philosophical perspectives on food and the body, the
importance and politics of the family meal, and the social construction of family
rituals. Instead I will focus on food identity and dietary transitions that we have made
over time.
When we were growing up in Guyana we prepared dishes from locally grown
produce - our staples were crops grown in our tropical climate and fish from the
Atlantic Ocean. Of course there were economic considerations tempering cultural
expression of food choices. It was inevitable with the impact of imperialism that the
local food culture evolved: local products merged with spices, herbs and varied
cooking styles contributed to a 'melting pot' cuisine. Dishes were made with these
local products: fish with plantain or rice with black beans. As Vera said “the diet in
Guyana was quite healthy, root vegetables, lots of greens, beef, fish, not a great
deal of pork, mostly beef and fish. We had lots of fruits. I ate plantains, there is a
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green one cooked in a certain way which is very good for you”. I said earlier that the
women were lyrical when talking about Guyanese cuisine. We were emotional about
foods from childhood, a time when identities take shape. Understandably, our
identities were heavily invested in this ‘melting pot’ food culture. Jillian said “I think
that because we all lived together no matter what race you were, we inter married
and everybody adopted everybody’s meal, culture and everything. That is the link.
Most of us still have our school friends and I think not many people around the world
can say that and I think because I cook Indian food, African food”. …
The women made a transition to English food on arrival and concluded that they did
not always choose wisely. Vera said “everybody went to the staff canteen and had a
meal: that was part of the culture, so then you had soup, steak and kidney pudding,
potatoes and a sweet”.
The PAR group reflected on their acquired eating habits and collectively decided to
transition to a healthier food style, a necessity if ‘we are to manage our diabetes
successfully’. I contend that bringing these women together enhanced their diabetes
self-management. Questioning self-management was accelerated within the PAR
group. Women questioned their food choices often, recognising that ‘traditional’
foods could not be construed as healthy eating; healthy eating is a prerequisite for
diabetes self-management. The lunches provided by the hostess of the PAR groups
changed to healthier options as the inquiry progressed.
However a further complication is the way English food culture is evolving and the
effect this has on us as bicultural women. Recently attention to sustainability and
food security means we pay more attention to locally grown produce, we attempt to
eat seasonally and we are all more aware of healthy eating. In the group we spent
many hours talking about food. It seemed imperative that the link between food and
identity was acknowledged first and foremost in the context of our bicultural
identities before the group was able to make a transition to healthy eating. The
women claimed that they had left behind the dense carbohydrates that were part of
Guyanese and English food. And while I do not have empirical data to support the
positive changes the women made in their lives, more exercise was taken and their
body weight reduced. The women together felt empowered to make alternative food
choices. They had an audience with whom to share their success stories. The group
was empowered. The women made remarkable headway in managing diabetes. I
have consistently argued that meeting as a Guyanese/English group prompted
reform and lifestyle changes.
This change in my identity, the women’s identity and their food choices was possible
because of the PAR methodology underpinned by the feminist principles outlined in
Chapter 4. Feminist research aims to capture women’s voices through
empowerment. The participants in this inquiry felt empowered as they expressed
their previously unheard stories of living with their long-term condition. Findings
indicate that this group continues to function extremely well. As argued this can be
attributed to our cultural cohesion and our background similarities. Although the
women were diagnosed many years ago, it was realised that it takes several years
of trial and error to learn self-management of a long-term condition. In the group the
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women became motivated to learn about diabetes together what had previously
been a neglected and solitary journey. In the PAR groups, the women set the
agenda and this was true collaboration with the participants. There is no doubt this
was collective action to improve the participants’ well-being.
Apart from sharing a similar background we were exclusively a women’s group
which does not mean I cannot research alongside men, but I doubt whether group
cohesion would have occurred in the same way. Women, not men, tend to make the
social and domestic decisions about shopping for food, nutrition, preparation and
eating and for the first 12 months of meeting together, the women were preoccupied
by food. However the PAR groups gave them the time and space to reflect and
learn from each other about diabetes self-management which accelerated during
this inquiry.
Collaborative learning
The learning and other shared lifestyle actions that they gained from interacting with
each other and the diabetes specialist nurse could be coined as experiential
learning which is learning that occurs informally through reflective activity but
requires initiative and an intention to learn. Kolb’s (1984) experiential learning cycle
gives a rational explanation and captures this collaborative learning that developed
among the women in this inquiry. Kolb’s model is normally used to improve student
learning but seemed to be appropriate to explain the learning that had taken place
among women in the group. The cycle comprises four different stages of learning
and for successful learning; all stages must be followed sequentially even if entered
at a different point. The first stage is the concrete experience; the individual must
engage with the experience and be actively involved in thinking and doing. Within
the second stage of reflective observation, experiences are reviewed and
discussed with each other and that aids reflection. Abstract conceptualization is
the third stage; as a result of reflection new ideas are formed, sense is made of
what is already known, various explanations are gathered inclusive of knowledge
developed from books and ideas from each other. In the final stage, active
experimentation, consideration is given to how the individual applies learning
gained into practice; learning has to be relevant within context which has brought
about changes in behaviour (Kolb 1984).
This four staged model provided a structure of the women’s learning process that
adds to the constructivist theories of learning. Individuals are more likely to learn
when it is an active process, as we add to what we know and believe already;
however we need to be fully involved in this learning process as we make sense of
what is happening in the world. The women needed to make sense of living with
their diabetes as they shared their experiences with each other in the PAR group
sessions. These facilitated group sessions encouraged their exchange of ideas and
experiences which is a social process of constructing a shared understanding of
their long-term condition and actions taken to improve it. Whilst I facilitated the
group conversations by asking questions, prompting reflection and suggesting
alternate ways of thinking, the women reviewed their current practices in managing
their diabetes whilst learning at their own pace, reflecting on their own experiences
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and understandings, and applying the learning gained into practical situations. The
learning cycle provided a focus for action and evaluation to complement the PAR
approach. The cyclical nature of the PAR process led to an acceleration of the
women’s learning and subsequently enhanced the women’s lives. The learning has
continued as the women have stayed connected with each other.
I was initially blinded to this development because I was so used to Guyanese
people seeking support from each other at great distances. I too had engaged in
similar behaviour as the women in the inquiry, as I sought support from my family
and friends who lived abroad. I attended several reunions each year and kept in
touch with the diaspora even if it meant travelling overseas. There was a special
bond among us which I felt I had not been aware of and had lost. However this
inquiry has reawakened my passion for what is good about my culture as I begin to
develop my own supportive networks within community groups and organisations
that exist in London. As a result of the inquiry, I now engage with many individuals
within the diaspora.
Feedback to Health Care Practitioners
The women in the group wanted an improved service for those individuals who have
diabetes. All except one had expressed resentment in accessing the care and
treatment that they required. They felt that all diabetic clinics should have all
facilities housed under one roof including services for testing vision and monitoring
feet. For some, the services were disorganised and fragmented. They also wanted
better preparation when individuals were newly diagnosed which included their own
families and to be kept informed of new treatments in the field of diabetes. All the
women identified the type of ideal service that should be available which included a
service that listens to their respective needs and provides a more holistic approach
to diabetes care. As previously mentioned in this chapter, holism refers to care that
treats the whole person including their physical, social, psychological and spiritual
wellbeing rather than focusing on just one aspect of need within the individual. Koch
et al. (2004) highlight that when medical help and support is required, a
collaborative model of care based on the individual’s decision to seek help rather
than the health care practitioner deciding what is best for the individual is preferred.
Health care practitioners need to adopt practices that reflect the diversity of need
among BME communities. These practices are referred to as cultural capability that
encourages an acquisition of skills and knowledge that enable a practitioner to
become culturally competent. Papadopoulos (2006) argues that practitioners need
to develop specific knowledge and skills such as being empathetic towards minority
clients, sensitive to the diverse ways culture is demonstrated and celebrated,
knowing about a range of diverse needs and how these can be met and becoming
self-aware in order to recognise and challenge discriminatory and oppressive
practice. This feedback will form part of the outcome of the inquiry.
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Conclusion
This chapter covers a discussion on the constructs which have been merged into
fewer headings because many of them were interlinked. As a researcher I
considered all the influences impacting on the women living with Type 2 Diabetes,
the importance of ‘self’ in self-management and giving the women a voice for the
first time to talk about living with diabetes. This included the women’s experiences
of the diabetic services provided for them, and together we explored the kind of
culturally integrated service that they would like to see for themselves in which
health care practitioners can meet the needs of ‘our’ BME community. As a
researcher I discussed how as a Guyanese community we learnt from each other in
the group sessions, developed and maintained Guyanese connections locally and
overseas and explored connections as forms of support leading to cultural cohesion.
I have discussed the framework underpinning this inquiry which has focused on the
reassessment of the terms culture, ethnicity and identity as we researched
alongside each other. I have revised my position of these terms and recognise that
tension can exist when an individual is living between two cultures. Straggling
between these two cultures has not been easy for me or the women but I believe
this has led to two new terms bicultural competence where individuals develop the
values, norms and beliefs of two countries so that they can function in both. We
found that we may be able to accept a bicultural identity but as Guyanese we
express our ethnicity and culture through food. Conflicts arose among the women
when they realised that to self-manage their diabetes effectively, it meant eating the
dominant culture’s foods. They have had to accept this position but through group
cohesion the women felt empowered to make alternative food choices and bring
about change in their lives.
At this stage I tentatively argue that giving voice to Guyanese women who live with
Type 2 Diabetes improved self-management and understanding of their chronic
condition, enhanced cultural cohesion, empowering this group to have a say about
the health services received and to communicate this to health care practitioners.
The final chapter provides an overview of the inquiry. I answer the research
question and assess if my aim and objectives are achieved. I consider what can be
done for the wider Guyanese community and draw together key issues emerging
from the inquiry. Actions taken by the women and the overall group action are
reviewed and the implications for practice, including commissioners, practitioners,
education and research are identified. Finally key contributions made by this inquiry
are presented.
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Chapter 9
Conclusion
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I was in the field for 18 months that comprised one to one interviews and 14 PAR
group sessions. This gave me the ample opportunity to build relationships with the
women. Closure is not desirable in this approach, rather one of the best outcomes is
that the women continue to meet and support each other even without researcher
facilitation. This Guyanese group of women gained in personal and group strength.
Giving voice to their experiences of living with Type 2 Diabetes was empowering.
Self-management of diabetes improved as the group continued to meet. I was
privileged to be part of this group and as a result it has reconnected me with my
Guyanese community.
Principles
The principles guiding this inquiry incorporated social justice, equity, freedom of
speech and human rights. I was conscious of Reid’s principles of inclusiveness,
collaboration, fostering collective action toward social change and an awareness of
power distribution. Another valued principle was participation through being
responsive to the women’s needs. I focused on emancipation, collaboration and
participation and that enabled me, as the facilitator of the inquiry, to walk alongside
Guyanese women.
I have drawn on different discourses to inform this inquiry and demonstrate
knowledge development within PAR; a feminist perspective that campaigns for
women’s voices to be heard, critical theory, a theoretical model for understanding
emancipatory research, ways of knowing and social constructionism. I paid attention
to researcher reflexivity throughout this text. I have attempted to be open and
transparent regarding the choices made whilst inquiring. Reflection increased my
self-knowledge and self-awareness. I was able to facilitate the women to make
deliberate, well informed choices.
As a researcher within this collaborative inquiry have
I achieved my research aim and objectives?
I have answered the research question and demonstrated that I have effectively
explored with Guyanese women their experiences of living with Type 2 Diabetes in
one to one storytelling and 14 PAR group sessions. The key findings are elucidated
below.
Objective 1
I have given voice to the women’s stories of living with diabetes as they espoused
how it felt to be living in a society where they have faced racist issues and
oppressive practices as a BME community living in the ‘mother country’ who was
once their coloniser. They feel disadvantaged in terms of their treatment for their
Type 2 Diabetes and have found it a challenge to navigate the health care system to
acquire equitable and culturally sensitive care.
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Objective 2
I have explored with the women their experiences of living with Type 2 Diabetes, the
difficulties they encountered when trying to obtain a diagnosis and relationship
issues with the health care practitioners including their GP. They had been selfmanaging their long-term condition but in retrospect not necessarily effectively as
they found out as the inquiry progressed. Some women had experienced
complications including hypoglycaemia episodes which they now realise have
serious consequences. Management of self was considered to be a full time job with
“highs and lows”. As PAR group interaction continued and reflections were
encouraged, the women spoke about lifestyle changes which they brought into their
everyday lives.
Objective 3
I facilitated this Guyanese women’s PAR group and in collaboration with eight
women explored self-care trajectories. The women drew strength from each other
as they shared their stories and the management of ‘self ‘improved. Their learning
accelerated during the PAR group process bringing dramatic improvement in their
health through changes made in their lifestyle: eating healthy foods, exercise and
monitoring their glucose levels. The women understood much more about medical
management as a result of being in the group and listening to questions being
answered by Mary, the diabetes specialist nurse. Of course this information should
have been available when they were first diagnosed so many years ago. Giving
voice was the most important aspect of this study. Considering that majority of the
women had this long-term condition for several years, this was the first time they
had been heard and acknowledged. The group gave them a voice and provided a
recipe for change.
Objective 4
I considered ways ‘we’ (women and researcher) could initiate health care reform at
individual level and/or within the Guyanese community living in the UK. Individually
the women have initiated reform through achievement of their personal actions. As
a result of the PAR inquiry, the women achieved their own personal actions in terms
of being more assertive with health care practitioners. For example, Vera managed
to have her condition reassessed after eight years and was referred back to the
hospital’s diabetic service for further investigations. They all made a great effort to
take more regular exercise as they realised it improved their blood glucose levels.
There was a notable improvement in their diet as the women developed awareness
that their cultural foods were high in fat, carbohydrate and calorific value so may not
necessarily be good for them. The overall group action project which was a
Guyanese recipe book was reviewed in light of their increased knowledge about
Guyanese foods and a later decision was made to produce a booklet about their
group experiences of learning to live with Type 2 Diabetes. The women intended to
share the booklet with the Guyanese community. We have been invited to speak
about our research study at a diabetes awareness day on the 13th July 2014 for
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BME communities in Croydon. The women had gone through the PAR cycle leading
to reform and a positive outcome.
It is important that the women’s achievements in this group are disseminated
through publication as they give an excellent picture of what it is like to live with
diabetes, trials and tribulations which I have captured within this inquiry.
Reflections on the PAR Process
Storytelling was followed by PAR group sessions where consensual and
participatory procedures enabled the women to set the agenda for discussion by
prioritising issues that were important for them, to reflect on their experiences, and
devise actions that they perceived as being both possible and meaningful within the
context of their lives. Enabling the women through the PAR process meant building
relationships, good communication strategies promoted through continual feedback
and validation and honouring the women as authors of their own stories. My
assumption is that people are self-determining authors of their own interpretations
(stories) and actions. Facilitation can assist participants to reflect on their world and
their experiences within it. In this inquiry the women were able to contribute to
collaborative thinking, decision-making and idea generation. I refer to reciprocity
that appeared to be a key-motivating factor to bring the group together in their own
houses. Being ‘home’ gave the women an excuse to reciprocate through providing
food and its preparation became the main fuel for conversation. Food discussions
started with specific Guyanese foods but later evolved into healthy eating plans as
new knowledge about diabetes self-management was grasped.
As the facilitator of the PAR process and guided by my stated principles, I believe I
contributed to the lives of the people with whom I researched. I resisted leading the
group, attempted to maintain neutrality or at least diffuse tension, and to build on its
strengths. I was aware of power relationships within the group and observed if they
were (or not) harmonious, accepting, co-operative and sensitive. I sought to be
attentive, accepting, comprehensible, truthful, sincere, appropriate and advisory
rather than authoritative or expert. I asked the diabetes specialist nurse to answer
questions that related to diabetes self-management. I later realised that the
women’s questions focused on the medical model of self-management. I contrasted
this to the women’s management of ‘self’ which meant becoming self-determining
and taking control of their lifestyle rather than being treated as “children” by health
care practitioners. I often acted as a ‘resource’ person in the group. Later I saw
myself as a catalyst to assist participants to define their concerns clearly, and then
support them in order to find solutions. When the participants had selected an
option, it was my facilitator’s role to assist with the implementation of the plan by
identifying the pros and cons and helping them to locate the necessary resources.
The recipe book and later information booklet for other Guyanese people were two
ideas promulgated. I did not take ownership of these ideas as I recognised that the
ultimate responsibility for the success of the process was with the women. A feeling
of ‘ownership’ was encouraged and I hoped motivation to invest time and energy to
make changes in their lives if they so desired and to initiate actions or make
resources that were sustainable.
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Key findings
The first finding in this inquiry highlights the consequences of not having a
diagnosis when an individual has Type 2 Diabetes. Not receiving a diagnosis made
the women feel powerless even though they were experiencing various symptoms.
These warning signs did not alert the health care practitioners that something was
wrong which left three women feeling confused, lonely and ignored. Most wanted a
diagnosis confirmed before they felt confident in making lifestyle changes. An early
diagnosis is crucial when as an individual has Type 2 Diabetes to enable them to
commence their journey of self-management. Unfortunately this was delayed for
majority of the women.
Family history, another finding, has shown that the women should not have been
surprised at the genetic predisposition to diabetes as they had many close relatives
and siblings diagnosed with the long-term condition. Other factors like obesity and
hypertension were also significant predictors, as three of them were obese and four
of them had hypertension yet some were shocked when they received the
diagnosis. More research is needed to explore the genetic predisposition to this
condition.
Self-management is another key finding that is important because it is used as an
umbrella term to cover a range of strategies that the women used to help them to
self-manage. However the complexity of the long-term condition prevented them
from doing so effectively until they commenced the inquiry. We collaborated
together in gathering and accessing more relevant information about Type 2
Diabetes from diabetic journals, the internet and involving a diabetes specialist
nurse in two group sessions. The women used herbal therapies alongside medical
treatment to improve their quality of life, a belief they acquired when living in
Guyana. However I encouraged them to discuss the matter with their respective
GPs and invited a diabetes specialist nurse to answer their questions and other
concerns in relation to the medical model of diabetes self-management.
Moreover the women were not fully cognisant of the complications of diabetes
especially hypoglycaemia or the impact these were having on their bodies but made
significant life changes during the group sessions to reduce episodes of this
complication and other comorbidities of the condition. They took more exercise,
reviewed their diet and became more assertive in demanding health checks from
their GPs when they suspected that something was wrong.
Knowing how to navigate the services and seek support and guidance for their
condition was crucial but remained an issue for nearly all of them except one
participant who had a supportive diabetic team at the health centre. Religion played
also an important role in the women’s lives as it helped them to self-manage and
cope with the condition. The women freely admitted that they had a preoccupation
with food especially Guyanese food, rich in fat and carbohydrate but developed
knowledge and understanding that the Guyanese diet was not necessarily
appropriate as they needed to consume a more varied one.
218
The women often reported psychological issues such as depression, stress and
anxiety another finding of this inquiry. They mostly attributed these mood changes
or ‘feeling low’ to living with diabetes as a chronic condition without a cure.
Depression can remain hidden among those with diabetes and stress can occur as
a trigger or when trying to cope with the long-term condition. The women believed
that stress had negatively influenced their diabetic state and some women even
suggested that stress had contributed to being diabetic. The association of
depression, stress and anxiety with diabetes warrants further investigation.
It was not unusual for the women to talk about ‘being Guyanese’ which is another
key finding as they often spoke of their homeland in glowing terms as if Guyana is
still as they left it many years ago. They had been middle class and led privileged
lives with a good education, servants, gardeners, cooks, but their lifestyles had
changed for the majority when they migrated to the UK. In order to retain their
identity they had become preoccupied with Guyanese food that depicted their
cultural heritage. Chinese foods or spices used in Indian curries, peas and rice and
root vegetables such as cassava, plantains and sweet potatoes were their
favourites. These Guyanese loved to eat and they loved their food. Changing their
lifestyle and diet appeared to be a huge challenge to them.
Connecting with the diaspora within the group sessions assisted them in managing
their lifestyle challenges in terms of diet and taking more exercise. They increased
their knowledge and understanding of the condition based on Kolb’s (1984)
experiential learning cycle. The women’s learning accelerated in the group
sessions, became more reflective, developed profound loyalty and acquired support
from each other as they learn to live with Type 2 Diabetes. They already had
travelled great distances including their migratory experience and made multiple
journeys in the UK and overseas to see family and friends and attend school
reunions. I believe this is a unique characteristic of Guyanese who create space and
time to connect and recall memories of living in Guyana. As a consequence, the
group sessions gave them this opportunity to meet with a like-minded group of
individuals who had faced racism and other obstacles in the UK but had survived. I
feel that women belonging to the same cultural group with common beliefs and
values can be beneficial and is a good explanation why the group has worked for
this group of Guyanese women.
Rigour and Evaluation in PAR research
To consider if this inquiry is rigorous, it is necessary to ask if it is accessible, makes
a difference and is sustainable (Koch 2006). In establishing credibility, as a
researcher I should have ensured trustworthiness and promoted confidence that the
phenomenon under scrutiny was recorded accurately. To establish trustworthiness
in qualitative research, Guba and Lincoln (1989) outlined four criteria that comprise
credibility, dependability, confirmability and transferability. The credibility of the
inquiry is assessed by examining the findings and interpretations which should
represent some kind of ‘truth’. Dependability is related to issues such as suitability
and transparency of methods and analysis. Confirmability is achieved when a
reflexive analysis is conducted and large amounts of data are presented during the
219
analysis process. Transferability relates to whether the results from the study can be
transferred to other similar situations.
I believe this work is trustworthy (Koch 2006) and credible. As the researcher of this
PAR inquiry, the methods used are transparent and I have provided a clear account
of the research process. Confirmability was achieved as I detailed the data
generation process exhaustively and reflected throughout the entire inquiry. The
results are transferrable to other settings especially where the emphasis is on giving
voice to specific cultural groups.
In the inquiry we have heard the women’s voices. Their voices are accessible; the
women have claimed their stories. Successful evaluation criteria have been
demonstrated as the women expressed a strong sense of self-development and
evolution in their lives, they demonstrated an increased understanding of their
situation, and the group initiated action. My task was to provide the women with the
support and resources to do things in their own way. The women decided on the
nature of things that affected their lives: they set the agenda. I claim that bringing
these women together enhanced their diabetes self-management. Questioning selfmanagement was accelerated within the PAR group. The women questioned their
food choices often, recognising that ‘traditional foods’ could not be construed as
healthy eating: healthy eating is a prerequisite for diabetes self-management. The
inquiry has come to its end but we are committed to support each other in the
future. Sustainability is a success indicator for PAR. Self- management of a chronic
condition is a lifelong learning process. In this way it is not surprising that the
women are still learning but that bringing them together as a group accelerated
learning and improvements in their health.
The women evaluated their achievements within this PAR process and commented
on the difference it had made to their lives. Agnes the most recently diagnosed
person in the group said she had “gained a wealth of knowledge… have learnt to
control her eating habits as well as the value of exercise”. Bea summed up her
learning in a few words “I have learnt a lot from the group and enjoy it”. Jillian felt
“the group make me understand the condition and really take a check on what I
have been doing all those years ago”. Vera who had the condition for several years
commented on the value of sharing and listening to people in the group “I have
learnt a lot too, it has been constructive, instructive and I hope we can continue to
meet”. Marjorie said “the group has taught me about diabetes”. Pam commented
that “like Marjorie I learnt a lot” but also talked about changes that took place in
Marjorie within the first month. I too had changed which they remarked on as I have
been reconnected to my people and Agnes stated “my culture”. The group is ongoing and the women have continued to meet on a regular basis. There have been
three further occasions, with the most recent in June 2014. Telephone contact with
each other has continued throughout and beyond this inquiry.
Strengths in using PAR
I feel very passionate about the PAR approach because it proved to be culturally
fitting. This group of Guyanese women thrived telling their stories. They had not
220
been listened to before. Talking about one-self and describing what it is like living
with a long-term condition is not usually a sought after discussion topic but within
this PAR inquiry the women were free to talk as they wished resulting in mutual
validation and building of self-esteem.
Connecting with the diaspora within the group sessions assisted the women in
managing their lifestyle challenges in terms of diet and taking more exercise. They
increased their knowledge and understanding of their diabetes in the PAR group
sessions. PAR gave the women a voice.
Limitations
There are limitations in this inquiry. Firstly I was new to the PAR process which was
a steep learning curve as I had to increase my knowledge and understanding of the
approach to research and to seek guidance in its application. I needed to
understand my role as a facilitator of change which was exciting but daunting within
this approach. Other methodological approaches had been considered for this
inquiry for example feminism, feminist participatory action research but I took a
pragmatic decision to choose Koch and Kralik’s approach because it resonated with
my participatory word view and I particularly liked the storytelling component. It
seemed appropriate for this group of women.
Another limitation is that this is an exploratory inquiry with a small group of
Guyanese women that took place within certain time constraints. As a consequence
I had to take a decision to leave the field and be realistic about what we could
achieve within the constraints of the inquiry but we still continue to meet as a group.
PAR is not just about success and achievement but more about working
collaboratively with people in the processes of change so as to improve the contexts
of their lives. This is what I learnt through the process of self-reflection and
evaluation which is documented in my journal.
Implications for Practice including commissioners and
practitioners
The implications of the findings are two fold for commissioners and practitioners.
Firstly, in terms of Guyanese living in the UK, consideration could be given to a
health service with cultural relevance to this otherwise ‘hidden’ group. The women
identified the kind of diabetic service they would like a consultative, holistic
approach to their care and treatment. They identified that a well woman clinic serves
as a good service delivery model and appreciated that with this type of clinic, staff
will be expected to routinely monitor chronic conditions including vision, feet and
yearly reassessment. The women would like to be kept informed when new
treatments are available and would like to see an equitable service that gives
access to the same resources for everyone for example, testing equipment,
glucometer, strips and a streamlined pharmacy that provides insulin.
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The women would like to take ownership of their diabetes rather than being told
what to do by GPs and health care practitioners. I advocate responsiveness in GPs
and urge them and other health care practitioners to listen to people, particularly
when they are from BME communities exhibiting diabetic symptoms.
Secondly, it is proposed that a ‘one size fits all model’ that is currently provided for
all individuals with Type 2 Diabetes may not necessarily be appropriate for those
with specific cultural beliefs and needs because it does not address cultural
variations, underlying motivations, preferences and behaviours. Instead I suggest
bringing likeminded people together and run expert facilitated groups as a logical,
practical and feasible recommendation.
It is my opinion that health care practitioners need to see and listen to the ‘person’
and not the ‘patient’. This requires practitioners to adopt a collaborative and
empowered approach by recognising ‘self’ in self-management when providing care
for those with Type 2 Diabetes.
I have demonstrated in this inquiry that bringing a small group together and
providing expert facilitation and cultural sensitivity is an excellent way to enhance
learning about chronic illness self-management. The outcome is improved
management of the self, self-empowerment and less dependence on the health
systems resulting in fewer consultations and fewer admissions to hospital. This type
of PAR group can be replicated with similar difficult to reach groups with long-term
conditions and it would be important to have a specialist nurse who is willing to
contribute to the group.
The theory of empowerment through togetherness developed within the PAR
groups in this inquiry encouraged individuals to connect, develop a cultural identity
and recognise the practical effect of togetherness to bring about change in their
lives. This type of support group can be used to target BME communities and
outcomes could be measured via satisfaction questionnaires to obtain feedback.
BME communities are concentrated in particular areas but others are scattered
therefore they should not be ignored because they are small groups. These
communities can face barriers when they have Type 2 Diabetes and find it difficult
to access services in their localities. GPs need to be aware of this and target these
communities by offering screening to those at risk of Type 2 Diabetes and other
long-term conditions. They could use their databases to identify those at risk and
devise a tool to assess what help is required. Lay educators could be involved in
developing diabetes awareness sessions which can be evaluated. Databases would
have to be monitored regularly to prevent those from slipping through the net and
services audited to assess satisfaction with the quality provided.
Commissioners of services should make cultural relevance a condition of
commissioning in line with population demographics. Service providers would need
to show a) awareness of cultural diversity and needs based on a cultural analysis of
the demographic data, b) a plan for delivering culturally competent services.
Commissioners could also commission education on the basis of what I have
proposed in the next section.
222
Implications for Education
Structured educational programmes could include cultural, social, political and
emotional components to raise awareness among health care practitioners caring
for individuals from BME communities. Whilst policies have been put in place to
develop a culturally competent workforce, I believe these policies need to be
operationalised. Cultural competence is a core skill that is already taught in
undergraduate health care practice to meet the needs of the diverse population
living in England. Yet questions remain about the best way to encourage a change
in attitude to BME communities. Health care practitioners need to be challenged on
ethnocentric beliefs and practices but this form of sensitive teaching will require
time-out to engage in work place workshops to develop skills of cultural awareness
which is an important component of cultural competence. They do not necessarily
need to be knowledgeable about all the various cultures that individuals belong to
but their approach should be one of openness, respect and a willingness to learn
about the person’s culture that they are caring for. As the diversity of the population
increases, the importance of cultural competence has become even more acute.
Whilst there may be similarities among BME communities, it is recognised that there
are cultural differences too which need to be acknowledged. If not, failure in
recognising these differences may result in discriminatory practice. It is recognised
that programmes that deliver cultural competence training need to be evaluated to
assess whether they have achieved their goals in skilling up the health care
practitioner workforce. It is important that health care practitioners understand that
bringing a group together particularly if they share gender, a chronic condition and a
similar 'cultural' background, it is likely that self-management (which is a lifelong
learning process) will be improved.
Nurses from BME communities have acquired the experiences of integrating two
cultures into their lives which can lead to the development of positive attitudes
towards BME communities. This form of bicultural competence can serve as a
vehicle for education and practice but nurses may still need to develop some of the
skills of cultural competences such as awareness of and sensitivity to cultural
differences and practices.
Implications for research
There is a need to develop further research with this BME community in the UK.
Obviously genetic predisposition to diabetes requires further investigation. I visited
Guyana in March to observe how Type 2 Diabetes is managed in light of the
Guyanese government’s reports and increased incidence of this long-term
condition. The recommendation about delivering a responsive service that is
collaborative and one that keeps people well informed is relevant in Guyana as well
as in England. Through my personal experience validated by that of the group, I
assert that a ‘touch of sugar’ appears not to be treated seriously by the majority of
the Guyanese population. I believe that public educative health promotion strategies
are required. I cannot fully record my initial discussions with the diabetic services in
Guyana due to the word limit however PAR would be an ideal approach to research
223
alongside individuals living with diabetes to help them understand and bring about
change in their lives. Regardless of residence, whether UK or Guyana, giving voice
to those living with long-term conditions and a subsequent PAR group process to
initiate education and action is advocated.
I recommend similar PAR groups that research alongside men and others living with
a chronic illness not necessarily diabetes and sharing a 'cultural' background.
Publication of this research should inform health care practitioners’ education and
continuing professional development (CPD). This inquiry clearly demonstrates the
power of sharing voices in a group as leading to reform (improved selfmanagement) in individual lives and in the group.
Key contributions made by this inquiry
To the body of knowledge
I have contributed to the literature on self-care in BME communities. Guided by the
literature, I was able to incorporate Reid’s feminist principles into the research
process, the main aim of which was to listen to the voices Guyanese/English
women. I strongly believe that the women’s experiences were central to how they
felt discriminated against and neglected by the health care services. This is
evidenced by the storytelling component of the research process. The stories had
not been heard before and the women felt validated. Findings indicate that this
group continues to function extremely well self-managing their Type 2 Diabetes. As
argued this can be attributed to cultural cohesion and their background similarities.
Although the women were diagnosed many years ago, it was realised that it takes
several years of trial and error to learn self-management of a chronic condition. In
the group the women became motivated to learn about diabetes together what had
been previously been a neglected and solitary journey. In the PAR groups, the
women set the agenda and this was a true collaboration with the participants. There
is no doubt that there was collective action to improve the participants’ well-being.
Methodological innovation
Participatory action research differs from most other approaches in health and
social sciences. It is based on reflection, data generation, and action that aim to
improve health and reduce health inequities through involving the people who, in
turn, take actions to improve their own health or in this inquiry, improve diabetes
self-management. Theoretically I was guided by Koch and Kralik’s (2006) principles
encompassing social justice, social equity, freedom of speech and an awareness of
human rights. The PAR methodology provided a democratic and collaborative
research approach involving facilitators/researchers’ and participants’ cultural
practices equitably. I often refer to participants/women as ‘we’, ’us’ or ‘our’, showing
my sense in being part of the group. The methodological innovation is the insider
space that I occupied as a member of the group which enhances the depth and
breadth of understanding of this particular BME community. Koch and Kralik
adopted a more outsider approach when using PAR with their specific communities
224
which is not perceived as an impediment when conducting research but has its
limitations.
Theoretical understanding
In terms of new knowledge, I reassessed culture and ethnicity as part of being a
member of the PAR group. If theory is defined by its practical effects and is
observed to change people’s view of everyday assumptions, theoretically we have
confronted the taken for granted meanings of culture, ethnicity and identity as we
researched alongside each other. We think differently about ‘our’ place in the world.
I have disputed the naïve common sense view about being Guyanese and now see
it as a favourable historical construction that suited the purpose of meeting as a
group. However I have been astounded by the influence our group has had on my
/our sense of belonging. My Guyanese/English identity has been strengthened. My
thesis is that listening to the voices of Guyanese/English women who live with a
chronic illness improved self-management, fostered new understandings of diabetes
and empowered this group to have a say about the health services received. We
are bicultural competent women and when we connect, we recognise the practical
effect of togetherness as empowerment and empowerment through togetherness.
225
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Appendix 1. NICE Guidelines
NICE (2009) guidelines offer best practice advice that takes into account individuals
with diabetes perceived needs and preferences. People with Type 2 Diabetes
should have the opportunity to make informed decisions about their care and
treatment in partnership with health care professionals. Good communication is
essential, supported by evidence-based written information tailored to meet the
individual’s needs. Treatment and care should be culturally appropriate and should
be accessible to those with additional needs. Families and carers should have the
opportunity to be involved in decisions about treatment and care and give support
that they might need.
Patient education
Structured education is an integral part of diabetes care and patients and carers
should be informed of this. It should be offered through a group education
programme to every person and /or their carer at and around the time of diagnosis
with annual reinforcement and review. The programme should have aims and
learning objectives and should support development of self-management attitudes,
beliefs, knowledge and skills for the learner, their family and carers. An alternative
of equal standard to people unable or unwilling to participate in group education
should be offered.
Dietary advice
Dietary and nutritional advice should be provided on an individual basis from a
healthcare professional with specific expertise and competencies in nutrition. The
advice should be provided in a form that is sensitive to the person’s needs, culture
and beliefs, being sensitive to their willingness to change and effects on quality of
life. It should be integrated with diabetes management plan, including other aspects
of lifestyle modifications such as increasing physical activity. General advice for
healthy eating should be given.
Management of Depression
The health care professional should be alert to the presence of depression and or
anxiety especially if it is preventing the individual from self-managing and refer the
individual to appropriate services.
Self-monitoring of diabetes
Self-monitoring should be available as an integral part of self-management
education to those on insulin treatment or on oral glucose-lowering medications to
provide information on hypoglycaemia, to assess changes in glucose control
resulting from medication and lifestyle change. Changes that occur during inter
current illness should be monitored and safety during activities including driving
should also be monitored. The individual’s glucose HbA1c level should be
monitored which may be above the general target of 6.5% which is set for people
250
with Type 2 Diabetes in general by WHO. The individual needs to be encouraged to
maintain target unless resulting side effects or efforts to achieve this impair their
quality of life.
The CV (cardiovascular) risk status should be reviewed annually, risk factors
assessed including features of metabolic syndrome and waist circumference, note
changes in personal or family history and perform full lipid profile including HDL-C
and LDL-C: TG – also perform after diagnosis and repeat before starting lipidmodifying therapy.
Blood pressure should be measured annually in a person without previously
diagnosed hypertension or renal disease. For a person on antihypertensive therapy
at diagnosis of diabetes, BP control and medication used should be reviewed and
changes made only if BP is poorly controlled or current medications are
inappropriate because of microvascular complications or metabolic problems.
Lifestyle advice should be offered re hypertension if blood pressure is consistently
above 140/80 mmHg or above 130/80Hg if there is kidney, eye or cerebrovascular
damage.
The kidneys should be monitored annually regardless of presence of nephropathy
and eye screening should either be arranged or performed at or around the time of
diagnosis. A quality assured digital retinal photography programme with
appropriately trained staff should be used. Repeat structured eye surveillance
annually unless findings require other action. Visual acuity testing as a routine part
of eye surveillance programmes should be performed.
A formal enquiry annually should be made about the development of neuropathic
symptoms causing distress. The healthcare practitioner should review
understanding at each clinical contact and offer psychological support according to
the needs of the individual.
251
Appendix 2. NICE Care Pathway
252
Appendix 3. Approval Letter from Ethics
Committee
253
Appendix 4. Written Information about the
Study and Consent Form
Ann Mitchell
Summary of the Project
This study aims to explore how Guyanese migrant women who migrated to the UK
during the 1960s and 1970s experience and manage Type 11 diabetes and the impact
this long term condition has had on their values and health beliefs. Many of the
Guyanese who came to England lived in and around London (Census 2001). This
Black and minority ethnic group of women either entered nursing, commenced
careers in teaching, secretarial work or attended courses at colleges and universities.
As the years have progressed, these individuals like the rest of the UK population are
ageing therefore they are more susceptible to long term conditions such as Type 11
diabetes. This condition is also more prevalent among black and minority ethnic
groups (DH 2001,2007). These groups are particularly at risk of Type 11 diabetes
because of the changes in their lifestyle and traditional diets. Many refuse to comply
with treatment and change their behaviour when they have been diagnosed as having
Type 11 diabetes.
When an individual is diagnosed with Type 11 diabetes they are expected to selfmanage their long term condition and to change their lifestyle especially diet and to
take more exercise. Changing one’s behaviour is not an easy task because it is
associated with one’s health beliefs. Helman (2007) discovered that health beliefs
will determine whether an individual is likely to seek medical help when they have a
health problem. Health beliefs are learned and developed from childhood and from
the family, networks, community and religion. When an individual migrates they
bring these beliefs with them and may cling to them when faced with a long term
condition. This disruption in their day to day lifestyle can impact on their lives so
they then have to learn to take the consequences of living with a chronic illness.
Research Question:
How do Guyanese migrant women living in the UK make sense of their experience
of living with Type II diabetes?
The aims of this study are:




To gain an insight into the ways Guyanese migrant women who migrated to
the UK experience and self-manage Type ll diabetes
To facilitate the voices of Guyanese migrant women with Type ll diabetes by
using participatory action-orientated research groups
To make a contribution to the understanding of Guyanese migrant women
who live with a long term condition
To explore the influences of health beliefs, values and perceptions in the way
Guyanese migrant women self-manage their Type ll diabetes
254

To inform health care practitioners and policy makers to contribute to the
delivery of appropriate diabetic
The proposed study is qualitative and adopts a participatory action research (PAR)
approach. Ten participants will be sought and given the opportunity to tell their life
stories in one to one interviews. Then they will be invited to join a group that is
based on the participatory action research approach of Koch and Kralik (2006). In
this group participants meet regularly, the researcher facilitates the participants to
take the lead. Participants set the agenda for group discussion, they reflect and
decide what actions need to be taken regarding their situation and in particular how
they continue to self-manage Type ll diabetes.
The analysis of the data for this study will consist of a combination of two
approaches. Koch and Kralik(2006)’s approach that is an analysis framework based
on traffic lights ‘look and act’ will be used to analyse the PAR group and Braun and
Clark (2006) thematic approach is being considered for the life story interviews.
These have been chosen because they complement each other.
All data are returned to the participants and they are invited to make changes and
validate their data (stories). Participants set the agenda for subsequent discussions
and decide on the group responses and action resulting from group processes. A
discussion of the findings (and actions the group have initiated) will be presented.
Conclusions will then be drawn by answering the research question.
References
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Research in Psychology. 3: p. 77-101.
Department of Health (2001) National Service Frameworks for Diabetes: Standards.
London: DH
Department of Health (2007) Working together for Diabetes care. London: DH.
Helman C (2007) Culture, Health and Illness. London: Hodder Arnold.
255
Ethics Committee Consent Form
Please select the point(s) which are relevant to your protocol:

I the undersigned voluntarily agree to take part in the study on …Guyanese
migrant women living in the UK making sense of their sense of their experience
of living with Type 11 diabetes.

I have read and understood the Information Sheet provided. I have been given a
full explanation by the investigators of the nature, purpose, location and likely
duration of the study, and of what I will be expected to do. I have been advised
about any discomfort and possible ill-effects on my health and well-being which
may result. I have been given the opportunity to ask questions on all aspects of
the study and have understood the advice and information given as a result.

I agree to comply with any instruction given to me during the study and to cooperate fully with the investigators. I shall inform them immediately if I suffer
any deterioration of any kind in my health or well-being, or experience any
unexpected or unusual symptoms.

I agree to the investigators contacting my general practitioner about my
participation in the study, and I authorise my GP to disclose details of my
relevant medical or drug history, in confidence. N/A

I understand that all personal data relating to volunteers is held and processed in
the strictest confidence, and in accordance with the Data Protection Act (1998). I
agree that I will not seek to restrict the use of the results of the study on the
understanding that my anonymity is preserved.

I understand that I am free to withdraw from the study at any time without
needing to justify my decision and without prejudice.

I acknowledge that in consideration for completing the study I shall receive the
sum of £.... I recognise that the sum would be less, and at the discretion of the
Principal Investigator, if I withdraw before completion of the study. N/A

I understand that in the event of my suffering a significant and enduring injury
(including illness or disease) as a direct result of my participation in the study,
compensation will be paid to me by the University (or sponsor where a clinical
trial is sponsored by a pharmaceutical company), subject to certain provisos and
limitations. The amount of compensation will be appropriate to the nature,
severity and persistence of the injury and will, in general terms, be consistent
with the amount of damages commonly awarded for similar injury by an English
court in cases where the liability has been admitted N/A

256

I confirm that I have read and understood the above and freely consent to
participating in this study. I have been given adequate time to consider my
participation and agree to comply with the instructions and restrictions of the
study.
Name of volunteer (BLOCK CAPITALS)........................................................
Signed
........................................................
Date
......................................
Name of researcher/person taking consent (BLOCK CAPITALS) Ann Mitchell
Signed
Date
Ann Mitchell.
...11.12.09.........
257
Appendix 5. Poster
Coping with diabetes?
Guyanese woman living in
London?
If you are a Guyanese woman with Type 2 diabetes living in
London then this will be of interest to you.
In order to help understand the issues facing you a research
study is taking place between January and April 2010. This will
take the form of one to one interviews and ten group
discussions
The information you provide will form part of a wider study that
will be used to shape the way support services are provided to
you.
If you would be willing to take part or would like to know more
then please contact me.
Ann Mitchell
01604 781710
helenaann@hotmail.co.uk
258
Appendix 6. Letter to Participants for
Interview
Dear Participant,
My name is Ann Mitchell. As a part of my PhD study at the University of Surrey I
am inquiring into ‘How Guyanese women who live in London and who are
diagnosed with diabetes, self-manage their condition’. My supervisors are: Dr Helen
Allan and Professor Tina Koch.
Although diabetes has been studied for some time, there are to date, few that explore
what happens when a person is diagnosed. It has been observed that when people are
diagnosed with diabetes they need to modify every aspect of their everyday lives,
what they eat, drink and the way they exercise. In the study proposed here I am
interested in understanding these changing aspects of Guyanese women who are
diagnosed with diabetes. I am curious about the sort of information that was
available before and after diagnosis. I would like to know how health care practices
and beliefs from Guyana can influence the way women self-manage diabetes. I
would also like to explore what it is that Guyanese women would want health
professionals to know or change that would improve service delivery.
What would you be asked to do?
Participation in this study will involve:
Meeting with me, the researcher, on a regular basis, for one to one
interviews/discussions about how you are self-managing diabetes. My PhD
supervisor may attend some of these meetings with me. I acknowledge that you may
have obligations including paid or unpaid work or other commitments so these
meetings will be set up to suit your availability. These interview discussions will be
conducted in privacy in your own home or some other agreed venue for about an
hour each time.
Questions asked will be:





Can you tell me about yourself from the time you were diagnosed with
diabetes to the present time?
Can you provide an example of an incident or episode that really changed
your life?
How do you feel about what is happening to you?
How has diabetes affected your lifestyle?
Which services have you utilised and what has been your experience with
these services?
259
Discussions will be recorded for transcription later so that I can reflect on and
analyse what you have said. The story you have shared with me during interview
will be given back to you for review at the beginning of our next meeting. During
meetings I will be interested in exploring your thoughts and feelings about such
things as your relationships with family members and friends, issues with shopping
or cooking and generally what it is like for you to live with diabetes.
When we have spent some discussion time together I will invite you to attend a
series of group discussion with other female participants of the study. I will facilitate
the group meetings assisted by Professor Koch, one of my supervisors for the initial
sessions. Each session will take around two hours. The purpose of these meetings is
for all the participants to share their learning experiences with each other and discuss
recommendations for health care practitioners aimed at improving the care of women
who are newly diagnosed with diabetes.
What choice do you have?
Your participation in this research project is entirely voluntary, and if you chose not
to participate in this research it will not affect any services you receive.
Are there any risks or benefits of participating?
Discussions about your experiences about being diagnosed with diabetes may cause
you some distress. If this occurs the researcher will check to see if you wish to
discontinue the discussion. She will also offer you information about contacts for
professional counsellors or suggest you seek a referral for counselling from your GP.
How will privacy be protected?
No identifying details of any of the participants will be recorded. Pseudonyms (false
names) will be used for transcribed interviews and when reporting the findings of the
study, unless you specifically wish to be named. Participants within the group
meetings will be told of the importance of confidentiality within the groups and that
the content of the group conversations should not be shared with anyone outside of
the group, although it is recognised that this confidentiality cannot be enforced.
Consent to participate in the group process is also an agreement to confidentiality
within the group.
All information will be kept in a locked filing cabinet in my office at the university
and will only be used for the purposes of this study. Only my supervisors and I will
have access to this information. At any time during the time of the study you may
ask to have access to the recordings and/or transcripts of the conversations should
you wish to change or edit them. The results will be marked as edited. At completion
of the study, the information will be destroyed, although the tapes/discs will be kept
for 10 years in the CRNME, University of Surrey archives.
How will the information from interviews and groups be used?
The results of this study will be published after 2010. None of the names of any
individuals (unless specifically asked to be named), or institutions, will be mentioned
in any publication and all the information will be kept confidential. If you are
260
interested in a copy of the findings you can contact me or my supervisors on the
phone number which is included in this letter.
What are your rights?
If you accept attending in this research, your rights are protected as following:
1. You have the right to ask questions of the researcher
2. You have the right to refuse to participate in this study
3. You have the right to refuse to answer any question, should you chose, and
need not give any reasons for your refusal
4. You have the right to withdraw from the study at any time by letting me or
the diabetes nurse educators know, and you need give no reason for our
withdrawal, and it will in no way change your medical treatment
What do you need to do to participate?
If you wish to participate in this study, please return the signed consent form to Mrs
Ann Mitchell, Horlock Building, The Open University, Walton Hall, Milton Keynes,
MK7 6AA
The researcher will then contact you to arrange a suitable time to meet with you.
If you have any questions or points for clarification that you would like to address,
please feel free to contact me by email at h.a.mitchell@open.ac.uk or
helenaann@hotmail.co.uk and I will be happy to supply any further information as
requested.
Your sincerely
Ann Mitchell
261
Appendix 7. Participants’ Consent Forms
Participants’ consent forms have not been
included in the appendices due to
confidentiality but can be made available at
the viva if examiners would like to see
evidence of consent.
262
Appendix 8. List of Prompts

Tell me your story about your diabetes

When diabetes was first diagnosed?

Did you notice symptoms?

How has diabetes affected your lifestyle

How long have you been taking tablets?

What sort of foods do you eat?

What is a typical day like?

Do you have regular check-ups?

What services are available for you?

Are you satisfied with the treatment that you are offered? Have you attended
any diabetes classes? What have these been like?

What do you do with the meter?

Can you provide an example of an incident or episode that really changed your
life?

How do you feel about what is happening to you?

Were you still working when you had diabetes?

How long have you lived at the present address?

How do the people around you support you?

What does religion do for you?

Do you have any beliefs regarding diabetes?

Do you use anything else to help with the diabetes?

How do you feel you are managing your diabetes?

Which services have you utilised and what has been your experience with these
services?

How do you find out information about diabetes?

Tell me about your life in Guyana.

How do you keep active?

Did any of your relatives have diabetes?
263
Appendix 9. Analysis of Vera’s interview
using PAR process
Vera’s Type 2 diabetes remained undiagnosed for 1 1/2 years
Diagnosis of long term condition
Diagnosed by colleagues following display of symptoms at work
Hereditary element to diabetes - father diabetic, and cousins on father’s side –
predisposition to the illness
Systematic account of the poor delivery of diabetic care following initial diagnosis
Originally a multicultural group that attended diabetic clinic but Vera noticed that
now mainly two specific groups attend – Afro-Caribbean, Asians and some Eastern
Europeans
Management of diabetes – medical model
Demonstrates strength of character, stoic, strong, fiercely independent, selfsufficient, strong coping skills, religion plays a role
Not coping – complex diabetic regime
Issues concerning doctor/ health professional patient relationship
Non-compliance with diabetic seminars
Supportive friends
Recurring theme - lack of education regarding the long term condition
Engaged in informal group discussions with other patients while waiting at the
diabetic clinic
Joined supportive group/organisation
Self-managed the condition and this is reflected throughout the interview
Inconsistent monitoring by patient and diabetic services
The effects of physical implications of diabetes
Early Experiences in Guyana before migration
Early childhood experiences in Guyana
Integration of different races in Guyana is reflected in the make-up of the Guyanese
population in Guyana and abroad
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Politics in Guyana - migration
Lifestyle/ Family life/experiences in Guyana – included diet, relaxation and beliefs
held by family
Comparisons made between Western lifestyle and Guyanese lifestyle and
differences highlighted
Patriarchal family – dominant father
Ambivalence about not returning to Guyana
Psychological/social problems
The effects of stress at work – managerial position
Several losses occurring simultaneously leading to stress – aunt, sister and mother
- shock
Lonely and isolated in the home
Evidence of denial – mother’s illness and possibly diabetes
Negative attitudes to diabetes
Stigma of having diabetes
The need for counselling
Carer’s role
Caring for mother with dementia, misdiagnosis of mother’s heart condition, sister
and aunt
Lack of education about dementia
Poor standards of care for mother in hospital/neglect of the elderly
Feelings of guilt when mother is admitted to hospital due to effects of caring
Diagnosis of the illness
I was diagnosed with diabetes around the end of September 1983 but had been
experiencing symptoms for about 11/2 years. I had been seeing her GP a locum for
over a year with various symptoms but no one did a test maybe because they were
not clued up about diabetes in those days. I was literally on the floor, sleeping
during lunch breaks in order to get through the afternoon’s work. I was drinking
everything she could get her hands on, including Ribena. My weight shot up and put
on half a stone. There was a spot on my nose that was like a boil but it wouldn’t
heal. These were all the symptoms that nobody was picking up on. I was getting all
sorts of genital itching so saw the GP’s locum an elderly female and the moment I
said look, I have a problem she immediately assumed that it had to be a social
disease. I mean I have been through so much and these things make me so mad,
265
because when you go there and you have got a problem of that nature and you
don’t know and I said ‘look lady let me tell you something, I said my lifestyle is such
you know, I lead a Christian life and this is it, I have not been sleeping around. I was
just really very low on energy, itching all over, coming out in hives and all sort of
things.
In the end it was one of my staff at work, she had been diabetic for along long time
and she spoke to somebody else who is also diabetic. She knocked on my door one
day and said ‘Do you mind if I have a word with you, she said we have been
observing your for a while and have come to the conclusion that you’re diabetic. I
didn’t know what the condition really entailed so I knew you that she had to eat at a
certain time of the day and she was on insulin. She said to me, you better go and
see the occupational nurse. So I went off and saw her and she did the test, the
usual urine test and said from the sound of this and the looks of this, you could be
dead because it was absolutely very dark brown and she started asking me one or
two questions. I went off and saw my GP that same night and suddenly he was very
concerned. He was a different character sitting up and taking notice. Then we had
booked to go to Spain and he said no, you’ll have to cancel because you can’t go to
Spain with untreated diabetes. Now all he needed to really do really was to say to
me ‘Well look, avoid certain things, keep out of the heat, you know drink a lot of
water. Then I had to wait about a month before I got to St George’s and they then
diagnosed it. I was put on a very severe diet, you could hardly eat anything and I
stayed on that for about year and thing improved dramatically. But then I suddenly
realised this diet wasn’t doing the trick and by that time I had seen one of the senior
people at St George’s who was not very courteous and he said to me ‘Why are you
here, your GP could be looking after you, in other words, you are not a true diabetic.
So I went away and I continued my diet and things started to get worse again. So of
my own volition I rang St George’s and I said ‘Sorry, but I need to come back and
see you’, and that is how I stayed with them until a year ago when they suggested
that at this stage my GP could look after the situation
Issues concerning doctor/patient relationship
It shows that the medical profession are not as clued up as they are now are about
diabetes. I don’t think they give any thought to the psychological effects of
somebody being diagnosed, suddenly being told ‘You can’t do this and you can’t do
that, you can’t have this, you can’t have that and it is affecting you in so many ways
and you have to stop and think about when you eat, how you eat and you must do
all these tests. They never pointed out the effect it could have on your eyes, gums
or your feet, there was not education as such. It was just, oh we’ve got it under
control and you go there every six months or three months.
Self-Management of Diabetes
But I had to find out about the condition myself so I joined the Diabetic Association. I
get the Balance magazines and when you go up to St George’s, you meet certain
faces regularly so we formed a little clique and maybe sit in there exchanging
information, who is on insulin and who is not and how are you doing. One or two
were severe cases so from speaking to them, I learned that I had to look out for
certain situations.
I kept having the tablets combined with the diet but these were not working. I’m
getting older and the condition is becoming more chronic I told them I need to go on
266
insulin now. They gave in so I went on insulin in 2000. Again you have to be your
own doctor because it is you the person going through the situation, you must know
when you are not feeling well, when your blood sugars are inconsistent and so on. I
kept seeing this man for a few years and you’d be sitting there for ages waiting to be
actually seen, because he sees his own patients and then comes ‘A few spots and
nothing to worry about and toddles off. I realised that my sight was not what it ought
to be and I was blaming it on computers at work so again I mentioned it to St
George’s but they lost my notes by the second visit. I thought no, no, I’ll try Sutton
so I went there for a few years, same thing was going on, seen very pleasant
people, they look at your eyes, we’re keeping an eye on this, again no explanations
for what the dire effects could be. So after a few years I turned up one day about
2002, waited ages to see the medical staff, they were new, they looked at my eyes
and talking not to me but over my head, oh well she’s got the makings of cataracts
or she has a lot of diabetic retinopathy, What on earth are they talking about? Next
thing I know my eyes are being lasered. I came home and my eyes were weeping,
they did that twice and I said to my family ‘this cannot be right’. So I rang St
Anthony’s and went and saw somebody privately. When he looked at my eyes he
said the state of your eyes suggest that you could go blind at any minute, there is so
much diabetic... So he said you are going to have to have your eyes lasered quite
heavily the left one particularly. So for a better part of a year a lot of laser work was
done on both eyes by which time he said ‘look this is going to be expensive’, I’ll
transfer you to the NHS clinic which is just across the road and I’ll see you there. I
mean it is very soul destroying; I had perfect vision even up to the time they were
complaining about retinopathy at Sutton Hospital, I was able to read without my
spectacles. Now of course I have lost peripheral vision because all of that had to be
lasered to prevent more blood vessels forming and maybe attacking retina. So I just
feel if you give me a soap box I‘ll be in Hyde Park, because I have experienced so
much. Although the situation has changed and every fifth or fourth person is diabetic
or suspect if you turn up at any hospital clinic. When I first went into St George’s you
look around and it was an even mixture of English people and non-English, you
know Indians, lots of Afro-Caribbeans, then some Africans then the others, China
man but it was more of a mixture. My last visit to St George’s it seems to be
predominantly Afro-Caribbean and Asian and we were seeing some Eastern
Europeans.
It’s new wave. Now is that because everybody is now clued up and looking for
symptoms or is because there are more people who may be or suspect or are prone
to diabetes because of their background or whatever?
Integration of Guyanese people
When I try to fill out the ethnic form I get so fed up I just tick whatever I fancy
because I have six nationalities running through me. No two members of my family
look alike but the African strain is there, the Indian strain is there, the Chinese, the
European, Red Indian. Now if you want to work out which, but this is what I mean
with Guyanese society, the only thing I missed out was Portuguese. the Portuguese
who immigrated to Guyana came from the Island of Madeira. And in the good old
colonial set up, if you were not English, Irish or Scottish, you were not classed as
Europeans. Even Afro-Caribbeans , some of those little islands, some with a
French connection, some with Irish connection, I have watched some doing the Irish
jigs, they are just purely of African descent. But there were lots of Irish people there
and they integrated. Barbados had lots of Irish but most Barbadians are mixed up
in many respects.
267
Family history
I would have loved to have done a family history. I found out that there was this Agi,
it’s Ghanian or Gambian sort of name and she would go back like five generations,
she might have been the start. She probably ended up in Guyana as a slave but
don’t know if she co-habited or if she was married but she took a Dutchman, that’s
where I got my name from and they produced children and I have seen the
documentation whereby the Dutch fathers applied for them to be made free men of
the European ancestry. That’s come down through how many generations but then
my father complicated it by marrying my grandmother whose father came from
China and mother from Barbados and the Red Indian. So you see on mother’s side
there is Dutch, French, a bit of English, Indian, you know. Now what do you make of
all of that. It is great but where do I start to look for my roots. We all look different.
Some like you, some like, some look, like me. It is just fascinating. I grew up in a
normal family set up, I had a very happy childhood but as get older life changes. My
father from what my mother said, was very strong, well-built person, very active,
academic, loved cricket, weight lifting, loved most sport, music, mostly classical that
was opera, his great love. In his early 30’s he became a founder member of the
Metropolitan Opera Guild, because of his love of music, there was music
everywhere. My inheritance, the cabinet and another in the other room is a
collection that he started in 1928. I never played an instrument which is one of my
biggest regrets because as I get older I begin to realise that If I was able to express
myself through my music it might get rid of a lot of stress and whatever. I used to
love to sing but then I realised that I didn’t have ... I did sing at school and I was in
the choir until I left school. In the last few years because of things that have
happened to me that have nearly saddened me, my own personal lifestyle and
things that have happened with my own family and so on, I don’t play. I don’t listen
to the music as often. I’ve only now started to do it again although it is consoling and
soothing; it brings back too many memories. I was active at school. I rode to and
from school. I played games, liked table tennis up to the time I left home in my early
20s. The diet there is quite healthy and your main meal is lunchtime, so you aren’t
going to bed on a full stomach.
Diet/lifestyle in Guyana
Root vegetables, lots of greens, beef, fish, not a great deal of pork, mostly beef and
fish. We had a lot of fruit. I ate a lot plantain, there is a green one cooked in a
certain way which is very good for you. When it is fried, when ripe, that is when it
can create problems but in those days we never had any problems. Cassava which i
loved but because I developed sinus problems at an early age they felt the starch
wasn’t good for sinuses. Yams, tania, that was one of my favourites, eddoes they
used to make soup because it’s good for your blood, whatever is in it the content of
it, you either cooked it or boiled it even children. I remember my brother four years
younger, when he was born, watch everything being done for him, they would crush
the potatoes or the eddoes, put a little milk, butter and that was in place of all these
supermarket foods. Very good diet, then there was plantain flour, used to make
porridge which is very nourishing and pablum, a sort of porridge, a famous Cow and
Gate milk which we used in place of fresh milk at home. We had fresh milk delivered
every morning by Indian farmers but we suspect it was watered down. As we got
older we used evaporated milk which is good but got lots of sugar but we were not
aware of the problems. Because we were so active, and it’s hot climate so you’re
sweating , getting rid of a lot of impurities, you go home from school or work and
268
relax for a short while and then you play games or visit a friend, you are walking and
not going by car. Evenings are nice, you are out again so whatever is happening to
you, you were probably not aware or you were able to cope with the situation. My
mother tells me that my father must have been in his late 30s, he developed what
we know in the Caribbean as ‘a touch of sugar’. I know two people from the
Caribbean and these are highly intelligent professional people , well I think can’t you
work this one out for yourself, if somebody told you have a touch of sugar , you
either prone to diabetes or you actually got it.
Hereditary factors
My father may have had it. Well my mother said that he had sort of scare, the
doctors put him on a diet of beer and something else after about a year he was back
to normal so he went back to eating and drinking normally. As he got older, he was
less active and teaching; he was always teaching and writing a book which I’ve got
there. He was getting less exercise and of course lots of stresses and strains. He
had a private school but in the end he gave up, you can’t bring up a family. So it
broke his heart but enjoyed …teaching at the age of 72. He retired four to five times
and they call him back to teach at Queens. Queens is run like an English public
school, prepared them for professional type careers and whatever else. I think he
went through a lot of trauma, because of having to close his own school and do
other things, maybe that’s what brought on his symptoms of diabetes, if they were
symptoms of diabetes. When I was diagnosed and we were trying to find out about
it, nobody in y nuclear family, had diabetes. Now my cousins in California, two of my
father’s brother’s children are diabetic. His first cousin, died recently became
diabetic in the later years and her son is diabetic and he is now in his early 70s as
well, so it seems to have come from my father’s side of the family. I suspect either
the Chinese or Afro-Caribbean. Amerindian link too. This high incidence amongst
the Amerindians who have now relocated to Georgetown and the coastal areas as
against those living in the interior because the ones in the interior, their lifestyle
would suggest that they are less prone to diabetes. Well they are still living as they
did before but there is a big influx now in Georgetown, has been for years and they
all want Western lifestyle and Western food and the Western way of living. So if you
can drive why walk.
Western and non-Western lifestyle in Guyana
Some people depending on what their culture is, they may have a light breakfast
which was just toast and tea or cocoa or something . You come home at lunchtime
from work or you come in from school and that’s your main meal of the day and
when you are finished you are back on the road so you are getting some exercise.
You come in at 4 o’clock and have maybe a bit of cake and in the evening you have
a light supper or a bit of soup. But when you leave and come to these shores, this
where you put on weight. When I left home I weighed 92 pounds, I was so light I put
myself and a friend on the scale together. I think I was a size 10. So you start to
work, then of course you’re leaving early in the mornings so may or may not have
breakfast. Come 10 o’clock, trolley comes round, lovely crusty rolls and cheddar
cheese and a nice slab of butter and coffee. And you are not moving because you
are at the desk. Lunchtime okay, you are making new friends, initially with a group
from the Caribbean, we met at lunchtime and we always had a meal. Everybody
went to the staff canteen and had a meal that was part of the culture. So when you
had steak and kidney pudding, potatoes, whatever soup and a sweet. When you‘ve
finished you go back and sit down for the next three or four hours. You go home and
269
its cold and you are hungry and my aunt who lived with us cooked an evening meal.
So whether I had lunch, I had an evening meal, then it’s cold and I’m too tired to go
out. Television was a novelty back in the 60s so you flop in front of it. Now that is a
change of lifestyle and then before you go to bed a biscuit or nuts. I reached a stage
after I had been diagnosed where we would have these board lunches once a
month, they would have lunch afterwards and everybody would take it in turns to
decide, they would choose the menu. They you are going back to sit in the office
and work away. When I come home, my aunt has a meal for me; we didn’t eat a lot
of it. Can you see the difference in the lifestyle between there and Guyana?
Particularly in the winter months, even though I did lots of social work and other
things, I went to meetings, I am only driving and then I sit for two to three hours and
come home tired. At week-ends I brought reports home to complete so instead of
being out on a Sunday…Stress is very much part of it, that and emotional in other
ways. When I came here in 1962, life was totally different to what it is now.
Opportunities for me didn’t exist. So you have this absolute frustration that you know
what you are capable of, you want to explore it but can’t. But I was luckier than
many people as I was being trained as the first wave of overseas managers...for
Telecoms but the civil service department at that time but from day one I hit trouble.
There were people who didn’t want me there, I just felt I am going to show you that
I can do it because I kept thinking that people will come after me, I don’t want them
to go through what I am going through. I should have looked after number one and
exited but I thought no, no, I’m here for about five years then it became, 10 and 15
years waiting for life to settle down because we had all the politics of Guyana in the
50’s and 60s. Coming back to work we had so many problems and I went through
some days when I could have put my coat on and walked out and never look back
but I kept at it. I didn’t get to where I wanted in the long run but I made a reasonable
success of it but it was very difficult. As you get older you’re coming up to 50 and
because I was made redundant with a whole host of other people at 50/51, I thought
do I want to start all over again doing things that I am competent with or I like. I
thought no I don’t really want and as diabetic, being on the job market with my
background and the rest, I did a variety of things. I worked as a bursary at North
London Poly for a year. Then before that I spent a brief time at the Prince’s Trust
but didn’t like the set up. I thought I would be happier at the poly dealing with female
students, overseas students. Then I went to Tanzania with a couple of friends, spent
three months there and did some teaching.
Political struggle in Guyana – migration
I was there with the first wave of rioting that was in the 60s, early 62 when the
constitution was suspended and Dr Jagan, he was the worst thing. Years later you
find out that the CIA was behind it and so on. When you are living through it I
couldn’t believe some of my fellow Guyanese could behave the way they did and as
a young person I was so disillusioned. I said to my father as soon as this dies down
I am off. I said I’ll go up to London because you could. I came here and my sister
and we are thinking we’ll stay four or five years till things settle down in Guyana.
Then its five years, 10 years, 15 years and it’s 20. I thought ‘God, we aren’t going to
get back, we haven’t put down roots because you’re like a schizophrenic, half of you
is enjoying life here and exploring new avenues and the other half is thinking, no my
family are back there, I want to get back home.
The ‘62 winter was worse than this one, it was snowing until April. We all had
gastroenteritis. It was like an epidemic, you’re up to your knees in snow and waiting
270
for buses but the pavements were cleared of snow, gritted so you were able to get
from point A to B.
Stressful moments
There are stressful moments wherever you are. When my father died in 1979 he
was here on holiday with my mother. We had just lost a great uncle, died a few days
after they left in April. That was sudden, a bit of a shock and as I said I suspected
he must have been prone to or had diabetes and it wasn’t picked up because he
kept passing out on a number of occasions. They suspected a heart condition, a
knock on effect so he came here and finished his book in Creolese. He just had a
massive heart attack and died. My mother then had to be sorted out that took nearly
two years for the Home Office to agree to let her stay. She couldn’t go back home to
sort out her affairs because if she had gone, she would not have been able to come
back. My brother was working mostly by the Brazilian border so he couldn’t look
after her. It was nearly two years of hell, trying …The Immigrants Advisory service,
they got involved and was like a proper court situation where you have to justify and
explain how much you work for, myself, my sister, what kind of home we lived in,
could we afford to look after my mother financially. Then you go into court, she goes
in ahead of me alone, and ask her questions, then I went in subsequently and if my
answers did not dovetail with hers, we’d be in trouble. Then an MP got involved and
helped us as well. They said this case should have been sorted out in a couple of
months, should never have got to this stage. In the middle of this my little niece got
chickenpox and passed it on to me.
Triggers for diabetes
Now I read somewhere that that virus stays in your body for awhile and can trigger
off a diabetic condition. I don’t know if it’s only chickenpox type of virus, but I
suppose the onslaught to your immune system plus I had just had major surgery, I’d
had so many different types of medication plus the stress and shock of your father,
immediately you cope but the shock registers some little while down the line. So it is
a whole host of things you can put together that perhaps contributed. All these
different measures to diabetes , I think I was always prone to it when I look back
now since I was young I used to get heavy-headed and my skin, these hives what
we call ‘mad blood’. As a child I used to think I am I going to go mad? You suddenly
start this inflammation, I get it even now if I eat anything and it is like bumps, they
irritate you and itch. I get it at the side of my mouth now and I don’t know what I may
have eaten but something triggers it off. Yes itching and I know sugar is definitely …
I have had that since I was a child.
A funny thing happened to me and not to my sister when I was about 11 at school.
At the school we used to wear Panama hats and dress in uniform and all this
palaver in the tropics. The hat kept the sun off. But when you were young all these
hats were put on pegs and they say it was the Portuguese or Indians used to put oil
in their hair which was a lovely breeding ground for nits and lice. My mother was
constantly checking for this so at about 11 and a bit same thing happened and it
was red powder or blue like an ointment that you put on your scalp overnight and
then you wash it out and my mother liked the red powder version. It was as Sunday
after getting the powder she put this thing on my head that night, you mix it with
coconut oil or olive oil and as she was doing it, I kept saying ‘Oh God’ , I am in pain,
it’s burning. In the middle of night I woke up, my face and head, the pain. I was ill for
nearly two months. My entire scalp peel, my waist down to my waist pains, I started
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to get sinus problems and I was healthy. The chemist obviously sold her the wrong
thing. Apart from maybe prone to diabetes which I didn’t know about that has stayed
with me up to this day. I have these sinus problems, my scalp is very dry. We never
found out what the chemist gave us, my parents were too kind hearted. I had
dysentery, I was ill. I had an awful time even at school trying to study. Every day I
had migraine. I still wonder what it is and what it did but my skin has never been
right ever since. My mother used to say you have the nicest skin but I got acne after
that that wouldn’t go away. All this pressurises you as a teenager and young adult. I
don’t know what he put into the powder and you see in those days they did not
realise the long-term implications.
Coping abilities
I come from a line of strong personalities and the women in both families have been
very very strong, strong minded even strong willed but determined to see things
through and that was the way my parents brought me up as well. My father was a
very strong personality and between him and the nuns they instilled so much in you
and I have my Catholicism behind me as well that keeps me going. I look around
and think they always planned they life and it always seem to happen the way they
expected it to so why can’t yours go that way? I don’t believe in Karma and I think
the lessons that I have to learn you take it on board and you deal with it but that
doesn’t mean it is easy.
Patriarchal family – dominant father
The last ten and certainly the last four and half were maybe some of the worst
because I am here on my own now. We were myself and my… my father never
believed in us being on our own when we came in 62 so he negotiated with my aunt
to move in with us, he wasn’t going to leave us two. We were in our early 20s. Your
father in particular is so very over-protective that in a way he wanted to orchestrate
every aspect of your life to make sure ... maybe he thought that by doing that he’d
make life more comfortable for you. It was difficult for him to accept that you’re
going to make your own mistakes and that you are no longer under his jurisdiction.
If I stayed I would be living with my parents, you don’t go and get a flat on your own
if you are not married. My aunt was great she died at 94, worked until 70 at Imperial
College, physically very strong mentally.
Support systems
Suddenly we are here, everybody, my friends said you have got made with your
aunt she does the cooking and all the rest. We had our little jobs around the house,
contributed to the household and in latter years would take her and my mother on
holiday because we were so close. We always thought that Sonja and I would be
looking after these two older ladies. Then when they left we will do the things that
we always wanted to do for ourselves.
Losses/bereavement
The next thing I know she’s got cancer and she died in 2004, exactly four months
later my aunt died she had cancer as well and we didn’t know. While I was up and
down to the Mars, I knew all the best hospitals in South London because from 1994
when my sister was first diagnosed, it was constant but she was such a strong
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person and single- minded. She tackled her cancer in such a way that some of her
close friends didn’t know she had it. I had to go along with the way she wanted to
play it. So much so that she convinced me that she was going to recover. She
recovered initially but then it came back with a vengeance. She had a very horrific
death, very horrific and my mother who was beginning to show signs of dementia
had to live with that so trying to keep an eye on her and all that time, my aunt was
riddled with pancreatic cancer. She knew she had all sorts of symptoms but nobody
was going to bother to investigate at that age. So when they did find out she was
only given three months or so exactly four months after my sister, she died. Then
my mother died a year ago last February with dementia and I ended up looking after
her.
Lack of education- dementia/diabetes
Nobody said ‘sit down’ and said look these are symptoms, these are the classical
behavioural problems you might encounter, this is how you deal. I learned as with
the diabetes as I went along and that is what makes me angry and very disillusioned
with the whole thing and being human i got upset with her and I didn’t realise she
had atrial fibrillation and the consultant who was dealing with her dementia in the
last couple of years kept asking the GP to investigate because it wasn’t her field.
Something was wrong, she’d just suddenly fall, near black out. I even called him
one day but he said to the receptionist to tell me to ring the emergency services,
they’ll come and lift her off the floor. I said that‘s not the main reason I can get help.
He should have looked into the atrial fibrillation because that’s what finished her off
in the end and made the dementia….every time she had an attack which was quite
frequently in the last couple of years, it triggered off the dementia, it was a further
stage in the loss of brain power.
Poor standards of care
My mother was a beautiful woman to look at, very gentle, very self-contained,
friends said we never seen her angry, she went through so much, never demanded
anything, she had this aura, she would never say ‘oh well I won’t eat that’ that was
not her style. She was such a lady and when I saw what she had to endure in that
hospital. Patients used to tell me and I saw it once myself, I turned up there
because of the dementia they tucked the bedclothes in very tightly and she’s pulling
at them and then she is lying there totally exposed. I used to say mom, ‘this is not
nice’, she didn’t know what was happening. That leaves me so upset to this day
which is why I went and I said my party piece at St Helier’s and the person who was
interviewing me said ‘we think that you would be pretty useful on one of these
patient consultative committees’ or whatever. So I said ‘yes’. That was June last
year when I saw her because she sent me the tape and I tried to get back to her a
couple of times, she doesn’t reply. When the dust settles I’ll get back to them. I
think they thought I was going to sue somewhere I said no because fortunately I
was able to be there with my mother most of the time, friends were able to support
me and a couple of relatives came from overseas just for short bouts. But some
things I witnesses there and one particular nurse she actually said in my presence
and my niece from Venezuela, she was sitting with me at the time, they treated this
poor woman with such disdain, she died a few days later, you know they get
agitated towards the end and she’s pulling out drips and all that and she said ‘this is
the most disgusting patient we’ve ever had. I thought I need to complain about this.
And then I thought hold on girl your mother is still there, you don’t know what’s
going to happen. And this poor lady when she couldn’t calm down only needed
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maybe one assistant not necessarily a nurse, if they had more. Yes just to sit and
chat with her, calm her down. I thought I can’t bear this so I went across and started
to chat. She hadn’t even had a bit of water for the day, she was dehydrated. So I
talked with her and she told me about she lived in Wellington, her home and so on.
She said all my life I tried to be nice to people, why do I have to go through this now,
why are they being so nasty? When she calmed down she had the water and
thanked me for stopping to talk to her. Two days later she’s dead. Now you know
did I just see that or could I just see that and not want to do something about it?
Now I mentioned it when I saw them and how this one particular nurse was kind of...
There were some very nice nurses, there were some who were dedicated but the
system was beating them because they were too short staffed, they need more
assistants to do the more mundane tasks to free them up to do other things but it
wasn’t going to happen. I still feel strongly about a number of things and dementia
of course, there needs to be a lot more education. But my mother sat there and one
day said why am I here? She had completely forgotten. She could remember from
way back but what she had to eat she couldn’t remember. If we had investigated the
atrial fibrillation I am not saying it would have prolonged her life but here quality of
life in the couple of years would obviously have been better.
Management of diabetes
I am not happy at the moment. Haven’t been for awhile because one type, the slow
acting sinsulin is not working the way it should. You take it at night and it’s
supposed to keep you on an even keel. I keep asking how is it? Last night my
reading was 6.4. I am supposed to have this dose between 16 and 22 units so I
thought no I’ll just have 15 because it’s 6.4 but then I thought just in case I’m on my
own, the last thing I want is a ‘hypo’. I had a bit of brioche because that will keep it
going with some hot water, nothing else. I get up this morning and the reading is
nine something, yesterday it was 10 something. I can’t explain it. I asked one or two
other people with diabetes if they’ve got similar problem. I thought ‘why am I giving
myself all of this insulin?’ It shouldn’t, even it remain at a level that I went ......or
should be slightly lower, what does it do? Is it just keeping staying in the system? I
noticed if I am hungry and I get up in the middle of the night, I have to have even a
small bit of bread or something to keep me going, some dry bread it sends it up
tremendously and then on another occasion it goes down. So is it because
psychologically, is it the state of mind, I don’t really know. I have mentioned it at St
George’s a couple of times before they got shot of me, to the GP.
I think they have diabetes educators because they do have seminars for all sorts of
things at St George’s but I have not been to any of them. I’ve been to the other one
run by the Diabetic Association some years ago and the other one when my hands
started to give me problems again, I paid to see a specialist at the London clinic and
she put through my paces and said there is an element of neuropathy, it affected my
hands and possibly with my feet. I am okay at the moment but they invited me to a
seminar there as well but I haven’t had... Not that it doesn’t interest me but when I
was diagnosed at first and busy with work and whatever else I couldn’t take time off.
I remember St Helier, can’t remember how I found it out but St Helier was running
sessions on dietary needs and whatever else and they showed you how to cook
certain foods. My aunt went and she learned so her cooking habits changed as well
as their eating habits, they were eating like me after awhile. We never overate in
that sense but more conscious of certain types of food.
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I have never been to any of the classes, they have little groups they form locally but
I never felt sort of moved to join them. I don’t know but I feel that because I’ve tried
to do so much research or to work things out on my own, a bit self-sufficient. I got
my information, well I spoke to nurses because every six months at the surgery they
send me the nits and bobs and I go and have my urine test done and blood test and
then you have your follow up appointment and she will look at your feet but the last
time I saw her she kept saying ‘why don’t you go back to St George’s? But at St
George’s the senior nurse I have known for years when she discharged me and
said ‘we only need to see you if something dreadful happens. In other words if you
have serious side effects. I need to see....Ann is the one, there is one who does the
medication, I saw her..... it must have been about four years, five years ago
because when my hands were bad I couldn’t negotiate some of the pens properly
so I needed ones that were easier to use. I said to her I need to come and see you
so I saw her and said I am not happy with the insulin, the way it’s working but she
said ‘oh I can’t talk that now’. I tried to see her before. We got on quite well because
I tried the pump at one stage and one day of the pump was enough for me to know I
really didn’t want one. She tried one without the insulin and the second day when
we went back for follow up they said to me ‘we can see from your face you don’t
really want it. Can you having to weigh everything you eat and then change this
bolus or whatever you call it and then you still have to change the cannula every
couple of days. I can’t adjust to it. It was there like a little camera sitting here so I
come home put on all different fitting clothes, to see how I could accommodate this
thing. I thought God what do I do with it? If it is a man he could stick it in a coat
pocket, if you are wearing a jacket. Then when I tried to have a shower I had to put
it in a plastic sack so that it doesn’t get wet.
I was one of the first patients to ask about it and they weren’t too keen at first and
said no but because I’m getting fed up and if that’s going to control the sugar better I
want to try it. My sister had to go with me as back up and before you go to bed you
had to tell it good night, you have to switch it off, press a button otherwise it will
keep going through the night. No way but then I think Ann got offended, don’t know
what it was but I was equally offended because when I rang her some other time
and said I do need to speak with you because I am not happy with the way the
insulin is working , she said Oh, yes I can’t see you today. When can I come in?
She said hold on a minute and the next thing a strange person, a nurse I’ve never
dealt with comes on the phone and says I can see you. I said I don’t know you, don’t
bother because I thought that is not the way. If Ann had said I cannot see you but
can arrange for somebody else to see you, but that was very offhand. So when I
turned up for my annual check the other one Mary said ‘Oh you didn’t turn up for
your appointment. I said no, I didn’t, I told them I wasn’t coming because I didn’t
know who this person was? I had the insulin. It was changed when I saw Dr
Whitehead but it’s still no …because Ann changed to five injections a day. After the
episode with the pump I was on four injections, three of the three of the short acting
Lispro and Insulatard which is night one. At that stage because I had to gone to her
about the pump she said after you have tried the pump you wouldn’t mind now if I
ask you to a little extra injection on top of the four. So at lunchtime I have to do two
which is the Lispro and a small element of the Insulatard to slow down absorption of
it so that’s how I ended up on five, four times a day. Five injections four times a day
but it’s switching the sites, I’m running out of spaces. You should see what is
happening there. I think it gets tired after a time and I am getting a lot o moles
around here, in the middle so that takes up place and I have asked about it. I mean
somebody should be looking at your injection sites. And the various kinds you put in
your arm. Do I want to go injecting into my arm? I do it occasionally if I am travelling
but I don’t want to make a habit of it. I feel I am really on my own right now because
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the GP doesn’t know much about diabetes; he used to argue with me until three to
four years ago. Why do I have to test more than once a day? He used to say to me,
you’re my only diabetic patient who has to have all of these test strips because they
are pretty expensive. I don’t buy them, I have them, I have them on prescription but
they are like £22. So if you are testing twice a day, I mean I have to do it in the
morning, at night otherwise I am not going to bed until I know what is going on and if
I am going out in the afternoon, I will check it because this when you see. The DVLA
because of my eyes, every two and a half years I have to sit here filling out forms
and say what I’m telling you is
true otherwise I don’t get ....they took my licence away three years ago and gave
me a provisional one that has to be renewed every three years and Moorfields had
to comment , the GP, the optician. I mean I could go and do drugs now and go and
drive, it‘s not a problem but because you are on insulin it’s a different matter. So
when he tells me we got over the argument with the test strips I actually went round
three or four places and got different quotes and I gave it to him and said ‘look if you
don’t want to spend all that money then tell your patients to go here because it was
cheaper. He doesn’t understand. When they pass responsibility on to the GPs he
may be good in other respects but where diabetes is concerned he is no pro.
Some surgeries have diabetic clinics but he hasn’t got anything like that. The nurse
sees you every six months, sends out bits and pieces and you’re supposed to see
her on one occasion and him on the other but when I saw him last august because
when I get a virus , I go on for six or seven weeks and then my sinuses are draining
all the time. Voice goes, everything goes and he should know that. I also had my big
birthday coming up in August and emotionally I was a bit upset because I didn’t
know whether I wanted to celebrate or not. I thought I’m missing my family so I’ll just
have a quiet day. I’ll go down to Sussex, there’s a lovely place there, have a few
quiet days on my own and when I come back if I want to celebrate, I will. I then pick
up this virus, really bad and a lot of it is emotional. It makes it worse. I think I know
myself pretty well and I know that a lot goes on in your head, and because so much
has happened in a few years, it’s all condensed. I keep saying to friends, this is the
first time in my life I am living on my own. It’s very strange, difficult.
Carer for mother
Before it was difficult with my mother because I was her carer. It was difficult then
but it’s a darn sight worse now because you’re stuck with your memories and
everything. There is something happening and I need to talk to somebody. I’ve got
some very good friends, I don’t have many relatives around here but it’s not an easy
thing to do. I know I have to cope with these things psychologically; nobody’s going
to sort it out for me. I’ve got to find my own level. I would like to find some outlet to
do something. I used to do lots of voluntary work before, local authority, Sutton, The
risk Quality Council when it used to function as it should have done some years
ago. I was a school governor round the corner. These are things that I have had to
give up because of my eyes, I don’t drive at night and all these meetings take place
in the winter, how do I get there unless it get taxis which I use a lot nowadays. It is
something I’ve got to come to terms with but when I read some of the information in
the diabetic magazine , or I’ve got my cousin’s cousin in Canada who is very
diabetic she sends me lots of interesting literature over the years. They talk about
your team which includes a psychologist because when you’re diagnosed you need
somebody to sit down and talk about how you feel about it. When you are caring for
somebody, you’re completely out of circulation. A lot of my friends are married so I
can’t just pick up the phone and say shall we go here? One or two who aren’t
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married have done all the things that I wanted to do or gone to places I wanted to so
they don’t do it again or they have not been in my kind of situation so they’ve got
other ongoing commitments in their lives. One used to ring me almost every
morning to make sure I was ok. Now I am off to Cuba. I’ve got to find my new milieu;
I don’t know where it is or what it’s going to be.
Work pressures and lack of support
The people at work don’t know how to react to you, and if they want to be nasty or if
you are at a meeting and not feeling particularly clear headed nobody’s going to
make allowances for it. Or if you need to stop and go and eat something, the
meeting is still going on. ‘If you can’t stand the heat in the kitchen then get out’ that
is the reaction you get. Nobody is supporting you in that respect. Then you move on
to tablets so you know your condition has got worse so you’re thinking , one tablet,
two tablets then it’s four, six and then insulin and nobody is saying to you .....
Somebody said to me ‘how do you do it? I couldn’t bear to inject myself , however
it’s a question that I don’t have a choice, I’ve got to face this. My sister could never
do it for me when I had this operation on my hand, she was very squeamish about
it, she just couldn’t. So it is the people who are with you as well as the diet, when
you are not feeling well or you eat something you know, friends will be offering
you...It is so many facets but you really need psychological support. Okay, the
hospice offered me to arrange counselling when my sister died, and when my aunt
died, I didn’t have time to worry with that because when my sister died, I was busy
with my aunt and then busy with my mother. I haven’t had time for all of that. But I
have time now which is why maybe it’s all going wrong in my head. When you get to
this stage in life you think of all the things you should have done or explored and I
never seemed to have the time or the health to do it.
Positive action
Well you just have to go for it girl but what it is I’m not quite sure. Cuba is a start; I
am just hoping that I can take the long flight because I haven’t been to Guyana for
10 years. Flying Virgin Altantic direct from Gatwick. Whether it is a side effect of the
diabetes, suddenly when I’m up there, for anything longer than five or six hours, I
spend half my time in the toilet, I can’t explain it. I asked the GP last trip before all of
this happened; we used to go to Barbados and then the last couple of trips we broke
in Antigua and stayed a week. I thought it’s a shorter flight , seven and a half hours
from Antigua, gives everybody a chance to rest, I’ve have friends there and should
be okay on the flight back , I wasn’t. I literally sit and pray and as soon as the plane
lands I’m out to the nearest toilet, I think it may be connected to the diabetes. I don’t
know but I asked the GP but he couldn’t be bothered, he obviously does not know.
All of those things make a bit wary. Could be without realising it I am a bit worked
out, because it happened once, can happen again or just stress. It is not the journey
itself; it’s the hassle of getting to the airport. The last time I was so furious I
thought, ‘we don’t want to be late, we want to get to the airport and it’s such a long
winded process, then when we were there, my mother went to the ...She said she
didn’t want to go to the toilet, then she went and we said okay, we’re going to be all
here when you come out just wait for us and we came out we couldn’t find her,
she’d gone. She said she decided to go to for a little walk. Now you can imagine a
crowded airport and with dementia. You think it’s maybe just an age thing.
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Dementia/Access to care services
What we would call senility which comes now under the wider umbrella of dementia
but we just thought there were odd things happening or she’d forget. We were in
Madeira once, a place that she knows and she went to have a shower. I thought
she’s been there a while and then she came out and we realised she hadn’t had a
shower. She said what happened? She could not remember because it’s a strange
bathroom , she could not remember to turn the tap on, how to adjust it so she must
have been fiddling for while trying to puzzle out in her mind what was going on.
While travelling we had to keep an eye on the ball but both of them, my mother in
particular, my aunt was more or less until the thing hit her brain. We just thought it’s
an age thing and we’re going to live with it, but then in her gentle way she started
being a bit stroppy, you couldn’t get her to move or do something she didn’t want to
do but she went through hell because it is not nice to have to observe or live with
and I got so angry at times. Why does this have to happen to my mother? She was
so particular about her dress or her personal hygiene and everything. It’s like having
I think a baby; you become so overprotective because you are doing for her the
things you would for a child.
I remember after she had a shower, I’m putting cream on her skin and dressing her,
she’d suddenly come alive because before it would be ‘ I can’t stand it, you’re going
to kill me if you put me in the shower and then when she finished and nicely
dressed, hair combed and everything, she would say to me... I said to her ‘now shall
I call the undertaker’. Some things were amusing but there were other times
depending on how you feel or how tired you are and these hands, in and out of
water all the time. We had a row the night she collapsed and that hurts me, she’d
say ‘it won’t be long now, it won’t be long. I told her to stop saying that since I was
about four years of age you’ve been telling me you’re on your way out. She’d sit
there, you’re trying to eat and she looks at the plague there, the Last Supper and
she says no I can’t, you don’t eat as if someone is telling her not to eat. So you have
finished cooking like 6 or 7 o’clock at night thinking of winding down then she come
back at 8 o’clock and she’s hungry. So you give her but she takes an hour to eat
and if you use herbs she has to remove every little spec. She had to get rid of it and
then another time, it did not matter. It’s now 8 o’clock and then I I’d say ‘do you want
a fruit salad? Yes and that night I felt so tired and then I have to clean up all of this
and I said you’re treating me just like an unpaid servant. I think I was upset and
tired. Then she turned around and said something to me ‘of course, it won’t be long
now. I said oh please and she went upstairs and I thought that was the last and that
hurts because it’s something that I never would have wanted to say, but I was so
worked up that night. The following morning I thought I was expecting to see the
nurse coming to see her about her dementia so I thought let her get up slowly let me
do my injection , have my breakfast and then I’ll go and get her washed and
dressed. Before I could finish breakfast I heard a thump. I thought oh God, she’s
fallen again so I went upstairs and she was lying on the bathroom floor with her
head under the basin. Big massive attack, her heart rate when I called the
paramedics was only 37 and I was thinking that it was like other times. I told her I
can’t leave you lying here, this was before I realised how serious it was. I tried to
move her but that was the worst mistake I made because not realising that it was
the heart, the exertion in trying to lift her was hard work and she tried to help me.
This awful sound was coming from her and I remembered what happened with my
sister when she was dying I thought, she was on her way out, the thoughts that go
through and I am screaming at her, please hold on. She couldn’t tell me what was
the matter so in the end I had to lie her back on the floor. She went to St Helier, two
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months in St Helier from a lady who used to go the toilet mostly on her own they just
let her lie there, they tell you to do everything while she is in bed and they’re telling
me this is their way of coping. It makes life easy for them.
A long sad story but I thought I was caring for her to the best of my ability. I never
wanted her to be in that situation, by the time they finished with her, she was doubly
incontinent, the dementia was much worse and you could not put her in a sitting
position without two people doing it. When she came to a few days later, she
thought she was falling off the bed and she was holding on to the sides and I gave
her a wash and she had something to eat. She said to me when we’ve have finished
eating, can we go home. I had to say mom, sorry I can’t take you home not while
you’re like this and that was my song for two months. The biggest pleasure would
be to see her come through that door with a smile on her face but I couldn’t. I am
asking social services for their help but for whatever reasons they wouldn’t meet
me. In the end I was told how to ask for, and when I mentioned a name, they’re
suddenly talking to me but it is too late. She spent two weeks in a nursing home.
Always seem that you’re doing your best, you think that you’re not unintelligent,
think you’ve got the measure of situation and you’re trying to cope, can cope with a
certain amount of knowledge and help but it all seems to disappear where it is when
you need it? In all of this, GPs no help, when I did go to him with a virus and with my
weird sense of humour said I think I have got swine flu and need help, he went
loopy. You’ve have been sitting out there and you’ve got.... I said I didn’t say I’ve got
swine flu, I said I’ve got a virus for like 11 days. I need something to clear up what’s
happening. Don’t speak to me, jumped up, ran outside and came back with a mask.
I should write a book. He hands me a mask and told me to put it on, couldn’t speak
to me until you’re wearing it so I put it on. I have a look at your throat but don’t
cough. I thought what is this? I’m feeling mentally and every other way low, I
needed someone to cheer me up and of course the receptionist and the people in
the waiting room probably thought this woman has got swine flu. When he was quite
finished, I asked him for the symptoms of swine flu. He’s telling me I should have
rung the helpline now, they would have probably told me that I have swine flu so
wouldn’t have had this conversation with you because of Tamiflu and then exited.
He is telling me, any vomiting, temperature, I told him no. I’ve had a temperature,
keep going hot and cold but when you are fighting a virus, this is what happens. I
haven’t got any of those things. So as I’m here can you give me the results of my
diabetic tests? He brings it up on screen but he can hardly wait to get shot of me.
Oh that’s fine everything, the liver is a bit high. I said what do you mean? Oh you
don’t need to worry about that. What’s the HbA1C? That’s fine. Now I know it’s
higher but that was the consultation.
She identified difficulties in accessing support and services for her. I think it’s there
in theory but people see me as being self-sufficient and strong and I know what I’m
doing so they think which is all the more reason when I hint or say I need some
clarification that you really need it. At St George’s that people that I’ve known for
years, the doctor been very helpful, we sit and chat. She told me there was not
much hope for my sister. She told me how many months she would have and
thought she was really getting up my nose. She said I think you need to face it. So
for that I have been grateful. It upset me at the time. I couldn’t tell my mother but
spoke with my aunt who was probably going through the same thing. She was quite
deeply shocked. The doctor isn’t one who suggested that i need to be discharged,
it’s the nurse. I didn’t see her the last time I went, it was the nurse. They just seem
to think you’ve had it for years maybe you’re coping very well, why are you making a
fuss if an HbA1C it a little bit higher than it should be but when it’s happening very
morning it’s not right. But even if I was sitting pretty you still need some kind of back
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up until your dying day. You need people to reassure you to say what are your
concerns at the moment? Either they can do away with those concerns by talking it
through with you or taking some sort of action. But they’re all too busy and too jaded
at the moment, there’s so many people coming through with the condition. I thought
shall I start my own group? But you need back-up, medical back-up. I could join a
local group, we could sit here and talk about it but if things require clarification or
attention, you haven’t got access to that particular source. I think there’s a local
paper, Sutton had a group of diabetics who would go walking. I think I kept the
advert but of course I couldn’t involve myself in anything like that at the time. The
diabetic Balance magazine is a very good magazine that comes out every month
and people write in but all sorts of complaints or they write letters saying how they
feel about different things. I can read it and then write in my comments. I’ve rung
them a couple of times to ask for information but again haven’t found that they are
able not on the phone to go into much detail or in-depth. In theory there is a lot
about but it’s whether it’s being used or actually fulfilling the needs of people who
are using it.
I don’t mind meeting fellow Guyanese in the clinics over the years and I chat to
everybody. Since they’ve changed everything at St George’s even if I was still
going, I don’t meet the same people. There’s one man I may see occasionally but
they’ve all been packed off to their GPs so we don’t have the network any longer.
There was somebody who used to come from Kent, the chat who lives in south-west
London, lots of West Indians living around the Tooting area. I’ve got lots of friends
who are diabetics. I told them we were eating out, I might be a little bit late, but I
don’t know. I’ll check with Grace if something’s happened but she lives near
Victoria. She comes from a large family, every one of them is now diabetic and
arthritis is the other complaint in the family. You would have to visit her because she
has just had a knee operation. I think to do with the diabetes so she is not mobile.
Hers has only been diagnosed in the last couple of years and she’s in her 60s. She
would be about 67 but her mother was diabetic even in Guyana. I don’t think she
ever lived here. It is one in five or something like that in Guyana. Pat my friend was
saying last night that she thinks one of the reasons why it’s so prevalent now in
Guyana, it is not just the stresses and strains that they live under but now people,
there’s a lot more money about, people are eating differently and they want all of the
nice rich foods. The fat, pizzas that’s a common way of life, so like Amerindians.
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Appendix 10. Significant Statements and
Commonalities
Significant statements for participants are detailed below and colour coded for each
participant.
1.
2.
3.
4.
5.
6.
7.
8.
Vera
Marjorie
Pam
Bea
Jane
Shirley
Agnes
Jillian
Vera’s significant statements
1. Diagnosis – in 1983. 27 years ago2. Symptoms - I had been experiencing symptoms for about 18 months and I had
been seeing my GP for over a year with various symptoms but no one did a test. I
was literally on the floor, sleeping during lunch breaks in order to get through the
afternoon’s work. I was drinking everything
3. Diagnosis - Eventually I was diagnosed with diabetes in September 1983.
4. Voice- Systematic account of the poor delivery of diabetic care following initial
diagnosis One of my staff at work who had been diabetic for along long time said
to me, you better go and see the occupational nurse. The nurse did the usual urine
test and said by the look of this dark urine you could be dead. I saw my GP that
same night he was a different character sitting up and taking notice.
5. Health service - Diabetes clinic - My GP has now taken over but was used to a
multi-cultural service.
6. Self-management - I was put on a very severe diet, I could hardly eat anything
but I stayed on that diet for about year and things improved dramatically. I don’t
think the medical profession gave any thought to the psychological effects of
being diagnosed, suddenly being told ‘You can’t do this and you can’t do that,
you can’t have this, you can’t have that. It affects you in so many ways. You
have to stop and think about when you eat, how you eat and you must do all
these tests. They never pointed out the effect it could have on your eyes, gums or
your feet.
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7. Complications – visual impairment I have lost peripheral vision because all of
that lasering. It prevents more blood vessels forming and maybe attacking retina.
I have lost peripheral vision because all of that lasering. It prevents more blood
vessels forming and maybe attacking retina.
8. Knowledge – Education - one or two of the people had ‘severe’ diabetes so from
speaking to them; I learned that I had to look out for certain things.
9. Initiating treatment - I went on insulin in 2000 at my instigation. You have to
be your own doctor. I have experienced so much.
10. Genetic predisposition - My father must have been in his late 30s, he developed
what we know in the Caribbean as ‘a touch of sugar’. ...and cousins on father’s
side – predisposition to the illness
11. Strength - Demonstrates strength of character, stoic, strong, fiercely
independent, self-sufficient, strong coping skills, religion plays a role I come
from a line of strong personalities and the women in both families have been
very strong, strong minded even strong willed but determined to see things
through and that was the way my parents brought me up as well.
12. Medical management - Complex diabetic regime. Struggles to make sense of
latest physical developments but knows things are not right. I am not happy at
the moment because one type of slow acting insulin is not working the way it
should. Yesterday it was 10 something. I can’t explain it. Now I am on five
injections four times a day I’m running out of spaces.
13. Expert - I feel I am really on my own right now because the GP doesn’t know
much about diabetes; he used to argue with me until three to four years ago. UKWhen I came to London in 1962
14. Work - Trained as the first wave of overseas managers
15. Trail blazing - I kept thinking that people will come after me; I don’t want them
to go through what I am going through.
16. Being Guyanese - I have six nationalities running through me. We all look
different.
17. Guyanese diet - The diet in Guyana was quite healthy. Root vegetables, lots of
greens, beef, fish, fruit, plantain, cassava, yams, tania, eddoes, pablum, a sort of
porridge. We used evaporated milk which is good but got lots of sugar but we
were not aware of the problems.
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18. Lifestyle change at work in UK - lovely crusty rolls and cheddar cheese and a
nice slab of butter and coffee. steak and kidney pudding, potatoes, whatever soup
and a sweet, etc Comparisons made between Western lifestyle and Guyanese
lifestyle and differences highlighted.
19. Stress - Several losses occurring simultaneously leading to stress – aunt, sister
and mother – shock work I went through some days when I could have put my
coat on and walked out and never looked back, but I kept at it. There are stressful
moments wherever you are. When my father died in 1979.In the middle of
sorting out my mother’s situation with the Home Office my little niece got
chickenpox and passed it on to me. The shock registers some little while down
the line. The next thing I know Sonia has cancer and she died in 2004, exactly
four months later my aunt died, she had cancer as well, at age 94. Then my
mother died a year ago last February. Before she died she had dementia and I
ended up looking after her.
Marjorie’s significant statements
1. Diagnosis - Ten years ago
2. Diagnosis - Shocked when diagnosed, diabetes like the end of the world.
3. Symptoms - Pre diagnosis, drinking coke, crisis blindness
4. Medical management - oral medications hypoglycaemics
5. Health Service – Diabetes Clinic
6. Knowledge - Diabetes genetic- is ‘fat’ but did not connect diabetes to lifestyle.
Information contradictory UK/Guyana.
7. Self-management - So in that first year I learned to live with diabetes: I suffered
with diarrhoea and I am pretty certain it had to do with the Metformin, but once I
changed my lifestyle and started on the diet, eating smaller portions, having
breakfast, lunch and dinner I felt I had more control. I know what I am doing; I
can have cake if I want. Since 1999, I have made a lot of changes, mainly in my
diet.
8. Transition - Learn to live with it. Lifestyle changes so you have to change with
it. A similar thing occurs when you have diabetes you have to change with it
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otherwise you will be unhappy. I have had practice in adapting from Guyana to
England.
9. Complications – hypertension
10. Health Promotion – Targeting family members that she think might be at risk
11. Guyanese - As Guyanese living in England we tend to stick together,
12. Guyana – Good memories – romanticised! I missed the sun, sea, friends and all
the privileges too. Loves the food but has had to restrict her diet but still eats
pepper pot, chow mein.
13. Guyanese diaspora – Maintained contacts
14. UK - I came to England at the age of sixteen. In England I came at the worst
time when we had that fog and smog. It was a totally different world so it was
strange and it was fun but sad as well.
15. Racial tensions - I was used to being the one on top in Guyana and then I came
and I became the one underneath. Yes it was a reversal of roles.
16. Social preference - I would prefer to meet with a Guyanese group of women
who are diabetic because you also have the other unique point of interest
(cultural?)
17. Stress - Sometimes I wonder whether the diabetes or the blood sugar level is
affected by other factors such as stress especially if you are stressed at work.
18. Strengths- I enjoy the little things in life before I die.
Pam’s significant statements
1. Diagnosis - Four years ago 2006
2. Diagnosis – Not a shock. Mother had something similar. Symptoms pre
diagnosis
3. Medical management- I started with two Metformin, one in the morning
and the other in the evening. I don’t like taking tablets but I do.
4. Health Service – I manage my diabetes with assistance from the Diabetic
Nurse with whom I meet every six weeks. Lack of equipment to test, has to
buy her own.
5. Knowledge- I used to have a diary to manage my diabetes and wrote a page
every day but decided this year that I would take control. I try to have a lot of
leafy green vegetables and water based fruit because that is what the body
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needs, more water. I know I can take care of myself. One of the best things I
attended was my six week diabetic course because they gave me a book and
the course was really instrumental in helping me to identify the foods that I
could eat.
6. Self-management - I don’t worry about my diabetes. People ring me up and
say how are you? I say ‘I’m fine’. I regularly check my glucose levels
Getting diabetes was something extra that came along as I already selfmanaged fibromyalgia and arthritis Alternative medicine- my mother sought
help from an alternative practitioner who was a qualified doctor called Nigel
and he gave my mother herbal medicine that improved her eyesight and her
diabetes. Has hypertension.
7. Complications – hypertension, fibromyalgia, arthritis, facial problems
8. Transition - With friends we could talk about roti and curry, patties and all
the Guyanese foods that I missed. I was mainly eating English food because I
never cooked my traditional foods. As Guyanese we travel great distances to
see each other. This happens regularly in countries such as Canada and
America. My cousins travelled from Scarborough to Ottawa to attend a
barbecue. We just love to socialise with each other and rarely worry about
how far we need to do this.
9. Spiritual – Buddhist. I chant when I have a problem.
10. Guyanese - In Guyana we ate very well and were quite healthy
11. Guyana – Good memories – romanticised! Although had a very English
upbringing with a beautiful home, lovely cushions, table cloths, china, silvers
and lamps. Left due to the political upheaval.
12. Guyanese health beliefs - We regularly took medicines like Scots Emulsion,
cod liver oil, cascara or castor oil, senna pods and everything, and we ate
vegetables, fish and meat
He would make us cough mixture, honey,
glycerine, and would tell us, ‘if you keep your stomach clean you’ll never get
sick’ so I have held on to these beliefs. I have a lot of support from Guyanese
friends with whom I talk regularly.
13. UK - I came to England May 1962, it was cold and foggy at the age of
twenty four. I remembered I used to live in Balham with my aunt but when
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my mother and sisters came the next year we got a house in Kent, so I used to
go up on the train there. We had a lot of fun.
14. Strengths - I did not want to take any more tablets so I said to the nurse “I’ll
bring it down”. I am quite determined.
Bea’s significant statements
1. Diagnosis - Eventually diagnosed - should have been picked up earlier. Why
the delay?
2. Diagnosis – 20 ago
3. Medical management - Diet-hypoglycaemic medication and now insulin
4. Health Service – GP
5. Symptoms – Did not experience any, tried hard to keep to a diet and keep
weight off due to family history.
6. Knowledge - Aware how to avoid of hypo and hyper glycaemia.
7. Self-management – Learn to live with the complications – careful with diet I
really try hard not to put weight on, eat sugar, I don’t do this and I don’t do that
and I try to lead a healthy life
8. Complications – kidney problems, neuropathy, visual impairment, feet
9. Voice - Knew something was wrong but no one would listen (kidneys) Not the
expert
10. Family history – Father died from diabetes, sister and cousin with Type 2
diabetes. Concern about family getting diabetes.
11. Beliefs - Stress can bring on diabetes especially her work as a midwife
12. Spiritual – Buddha helps me to come to terms with my diabetes, it is
humanistic in its approach
13. Guyanese alternative therapies – Bitter melon
14. Guyana – good memories – romanticised!
15. UK - Guyanese nurses wanted 1950s/60s. Wanted to be a nurse so applied.
16. Work – midwife then lived abroad but returned to UK.
17. Racial tensions - 1960s
18. Trail blazing – first black person to be appointed for the job as community
midwife
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19. Stress - I believe stress can have an effect on you. I enjoyed my work but it was
very hard and stressful.
20. Fear – diabetes, mother and father died in their sleep
21. Strengths - I took control
Jane’s significant statements
1. Diagnosis - 2000, 10 years ago
2. Symptoms - none but was aware of them
3. Medical Management – diet and during the first year given metformin, then
insulin to take due to hypoglycaemic comas at night
4. Health Service – Sees consultant every six months
5. Knowledge – Was aware of the genetic link with diabetes because father and
grandparents died from the condition. Took prevention action by checking
regularly with GP before finally being diagnosed. Used to attend diabetic
classes but stopped. Receives a diabetic magazine but has not found time to
read them.
6. Self-Management – Has a routine, simple diet, eat a lot of salads and some
of her Guyanese foods, do not ‘over eat’. Exercises regularly and attends tea
dances. Made lifestyle changes.
7. Family history – father and grandparents had diabetes, from Chinese
background.
8. Spiritual – Attends church regularly. Is a devout Christian and believes in
God
9. Guyana – Comfortable life as a child but did not get a good education, left
school at 14.
10. UK – Came to England in 1973 with son due to the political scene in
Guyana, difficult experience initially due to the type of work available but
the found a reasonable job in a large department store. Settled down to life in
the UK but socialised with the Guyanese community.
11. Guyanese diaspora – Very active in the Guyanese community, arranges
dances and has many contacts in the UK. Involved with son and family and
with step siblings abroad.
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12. Support – From family and a lot of friends. “If you stay here long enough,
the phone will start ringing and won’t stop”.
13. Losses – Sister died of cancer overseas. Very upset when she received the
news.
14. Strengths – Demonstrates strength of character, has taken control of her
diabetes, expressed reluctance in joining the group as has a very busy
lifestyle perhaps contributed to diabetes.
Shirley’s significant statements
1. Diagnosis – Eventually diagnosed in 1998, 12 years ago.
2. Diagnosis – Delayed diagnosis after seeing the doctor on several occasions.
Shocked- like end of world
3. Symptoms – Recognised something was wrong , tiredness, blurred vision and
losing weight rapidly
4. Medical Management – Metformin, things are different when first diagnosed
to now 10-20 years .
5. Health Service – GP
6. Knowledge – Recognises that she needs to keep diabetes under control so test
glucose levels on a regular basis, obtain information from balance magazine
that she reads and son is a scientist.
7. Self-Management – Changed diet post diagnosis if not got a hypoglycaemic
coma, used to be an erratic eater. No longer follows a proper Guyanese diet but
eats peas and rice and cassava occasionally. Aware of the co-morbidities of
diabetes e.g. heart problems. Made lifestyle changes. Testing sticks expensive,
not free, a problem for many hence no testing.
8. Complications – hypertension, degenerative disease affecting all organs in the
body
9. Family history - none
10. UK – Came at 23 to join husband and studied to be a teacher.
11. Work – Teacher, head of English Department, enjoyed teaching but became
stressed with OFSTED so retired.
12. Emotional issues – Problems with marriage as husband worked overseas so got
a divorce
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13. Spiritual – A Methodist all her life but still attends Methodist church in UK.
Praying helps.
14. Guyana – Good memories, happy growing up in the country side, enjoyed a
free life.
15. Guyanese Diaspora – Active in the community, helps out at a club.
16. Feeling Low- Sometimes gets a low unexplained feeling, difficulties managing
a long-term condition
17. Voice – Recognises the need for a more holistic service under one roof rather
than having to attend podiatry clinics or retinal screening elsewhere. So many
things to check – feet, eyes, you have to aware of these things yourself, take
control. Doctors are blinkered, only see diabetes, need to be reminded about
doing other tests e.g. kidney, liver.
18. Predisposition – Problems with black people with kidneys problems – needs
another way to test
19. Strengths – Assertive lady and determined to take control of her long-term
condition
Agnes’ significant statements
1. Diagnosis – 2007, 3 years ago
2. Diagnosis – Delay in diagnosis even though she was convinced that
something was wrong, had to convince the GP. Shocked when she received
the diagnosis.
3. Symptoms – Dizzy and blurred vision
4. Medical management – Diet, metformin and attendance at diabetic classes
5. Health Service – GP clinic
6. Knowledge – Attended diabetic classes, introduced to certain classes and
told to eat less carbohydrates but more greens and the need for more regular
exercises every day. Was given leaflets and books to read for example, case
studies but haven’t read them recently.
7. Self-Management – Diet varies but normally eats less fried foods and does
not follow a full Guyanese diet. Had to change lifestyle. Visits the clinic
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regularly for check-ups, weight is monitored, blood is checked and
everything else.
8. Family history – Son has Type 1, husband had Type 2 before he died and
twin sister Type 2
9. Alternative medicine – Husband and so used herbal remedies and herbal
sticks from Guyana. Tried cinnamon water and okra juice but prefers to only
take prescribed medication.
10. Feeling low- Not depressed but has ‘off’ days. Lonely following death of
husband so has been tearful. Son visits and niece sleeps at her house.
11. Spiritual – Church helps her to relax. Has faith in God and God heals, keeps
her going.
12. Complications – Glaucoma in both eyes with no vision in the left eye, heart
related issues
13. Stress – speculated whether stress caused diabetes
14. Guyana – Became a politician in the Guyana government when Forbes
Burnham, Prime Minister was in power. Enjoyed the political life. Met her
husband during that period and married him.
15. Guyanese Diaspora – Very active in the Guyanese community, on several
committees, organises dances and attends many church events that fills up
her day. Visits relatives on frequent bases that live abroad.
16. UK – Came to the UK to join her husband in 1977.
17. Guyana – Aware of the work re diabetes that had been going on, has a
diaspora contact
18. Work – Admin for the local housing benefit office, job was a bit stressful but
satisfying
19. Strengths – Very active lady who enjoys socialising with the Guyanese
community – stayed connected.
Jillian’s significant statements
1. Diagnosis – 2002, 8 years ago
2. Diagnosis – Failed to recognise what was happening to her, a relative noticed
loss in weight, took a reading of her blood glucose level and suggested she
made an appointment to see her doctor. Surprised at being diagnosed.
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3. Symptoms- None, did not have the usual ones like feeling thirsty
4. Family history – Yes, parents, two sisters, and husband with Type 2 and
daughter with Type 1.
5. Medical management – Metformin, Glimepiride and Beretta to lose weight.
6. Complications - Hypertension
7. Health Service – Diabetic nurse at the hospital, followed up.
8. Self –Management – Follows a routine diet which consists partly of
Guyanese foods. Had to change lifestyle. Monitors her diabetes closely by
taking blood sugar levels regularly.
9. Knowledge – Information from Balance magazine, gets in touch if needs to.
10. Spiritual – Catholic – attends church regularly, sings in a choir.
11. Guyana – Good memories of life there, felt it was wonderful with servants
and a large house.
12. UK – Came to England in the cold in 1964 and did not like it. Lived in a flat.
Noticed a change in their circumstances so had to learn to live with the
transition. Situation improved when they bought a house in a friendly
neighbourhood. Husband was a diplomat so spent time living abroad and
went back to live in Guyana for a period of time but then returned to UK in
1981.
13. Work – Admin for a small manufacturing company.
14. Guyanese Diaspora – Has stayed connected with Guyanese roots, attends
reunions in UK and abroad and visits family members in UK and abroad
15. Support – Receives support from two daughters and a son who live near her.
16. Emotional Issues – Difficult and stressful relationship with her husband
throughout their marriage, unfaithful, impotent, diabetes but cared for him
when he developed dementia. Married for 51 years when he died in 2011 in a
nursing home as she could no longer care for him.
17. Strengths - Enjoying life now, “can come and go she likes” enjoys the
freedom.
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I then wrote up the commonalities based on the significant statements for the eight
participants. These are described as constructs:


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








DIAGNOSIS – women conveyed various experiences in receiving a
diagnosis with three of them experiencing a delay – Vera, Shirley, Agnes,
Marjorie and Bea
SYMPTOMS – nearly all of them were experiencing symptoms such as
dizziness and drinking copious amounts of fluid except Jillian and were
aware of them but the presenting symptoms were unrecognised by their GP
FAMILY HISTORY – nearly all the women had a family history except
Shirley
GATHERING INFORMATION – lack of information/education except
Pam and Shirley
SELF MANAGEMENT – focused on this and use of alternative therapies
by some of the women.
EXPECTED LIFESTYLE CHANGES – women were learning to live with
diabetes and it meant disengaging from old habits
COMPLICATIONS – all women were experiencing complications.
RELIGION/FAITH – this played a key role in helping them to cope with
diabetes
DEPRESSED/FEELING LOW – experienced changes in mood
STRESS AND DIABETES – some of the women believed stress caused
their diabetes, Vera, Bea, Marjorie and Agnes
Being GUYANESE – talked about their previous lives in glowing terms
PREOCCUPATION WITH FOOD – they loved to eat their traditional
food
MAINTAINING CONTACT WITH THE DIASPORA – this was a
survival strategy.