The Knowledge Women with
an Intellectual Disability Have
About Breast Health
Caroline Connolly
Clinical Nurse Manager 2
Cheeverstown House, Templeogue, Dublin 6 West,
RNID, MSc(Intellectual Disability), Dip.
Starting on the Research
Journey
Breast health is an important part of a
person’s overall health and wellbeing
A need to explore the understanding of
women with a intellectual disability about
breast awareness, breast screening and
breast cancer
Study Design
A Qualitative Study was conducted
Inclusion Criteria
Women with an Intellectual Disability over
18 years old
• Who were members of the Special
Olympics in a Midlands town in Ireland
• Who were verbally able to communicate
and articulate capacity to participate in the
study
•
Study Objectives
Identify the level of understanding that
women with an Intellectual Disability have
about breast health
Identify their understanding of breast
awareness, screening and breast cancer
To hear the women’s experiences about
breast health
To inform research involving people with
an Intellectual Disabilities
Recruitment and Ethical issues
Recruitment
Chairperson of Special Olympics in the
Midlands was approached
• Application submitted to AIT Nursing Ethics
Committee
•
Post Ethical Approval
• Advice sought on potential candidates
• Met with potential candidates
• Pseudonyms used to protect the participants
identities
Research Participants
Target Population
• Six women were invited to participate in the
study
• Two women declined the invitation
• Four women were interviewed as part of
the research
The Participants
• Participants were aged between 30 to 40
• All participants resided at home
• All participants were members of Special
Olympics
The Focus Group Interviews
Research Aim
• To explore the knowledge of women
with an intellectual disability about breast
health
Outcome
• The participants were very informative
however it was evident they had limited
knowledge about breast health
Themes identified from the
interviews
Theme One- Breast Health
Sub Themes
Self Check, Breast Screening, Health and Information
Theme Two – Breast Cancer
Sub Themes
Causes, Signs and Symptoms, Treatment and other types of
cancer
Theme Three- Dependency
Sub Themes
Family and Staff
Breast Health
The study revealed no participant had ever carried out a
breast examination
Half of the participants did have regular breast checks usually
by their mum
Never informed why they should check their breasts
As a result no participant was cognisant of how their breasts
should normally feel
They had limited awareness of breast screening, they found
the term confusing
General consensus from all participants was being healthy
was important
However having knowledge about health and applying it
was challenging for them
Participants could not recall receiving or seeing
information about breast health
TV was seen as an important source of information
Breast Cancer
Participants displayed a limited knowledge
about the signs and symptoms of breast cancer
Knowledge of the risk factors associated with
breast cancer, the participants displayed a poor
understanding
They were able to identify some treatment
options for breast cancer “ take the sick breast away
and replace it with a healthy one”
The true understanding about the treatment for
breast cancer was not apparent
Dependency
Family and support staff are an integral part of
all the participants lives
They had little autonomy over their healthcare
needs
All appointments were made by family carers
despite all participants having mobile phones
“ my mammy makes it for me”
Reliant on staff to take part in most activities
The need for family carers and support staff to
be aware of the health needs of people with an
intellectual disability was very apparent
Conclusion
The study identified women with an intellectual
disability have limited knowledge about breast
health
It further highlights the need to provide education
and information in accessible formats to empower
them to gain timely access to cancer services
The integral role family carers and support staff
have in supporting and accessing health services
The need for further research is necessary
The essential role people with an intellectual
disability have in informing and being included in
research
Recommendations
To provide education and information to people with
an intellectual disability, their families and support
staff about breast examination, breast awareness and
breast cancer
The important role of the RNID and cancer services
working in collaboration to enhance the breast
health of the people they support
The need for Breast Screening services to adapt their
services to facilitate people with an intellectual
disability accessing screening.
The need to involve people with an intellectual
disability in health promotion and provide
information in understandable formats
The essential role people with an intellectual
disability have in informing and being included in
research
And Finally...
“ Nothing about me without me”
(Nelson et al ., 1998)
Nurse’s Awareness of Pain Recognition and
Management in Individual’s with an
Intellectual Disability and Dementia in an
Organisation in the Leinster Region
Martina Barnes
Clinical Nurse Manager One,
Cheeverstown House, Templeogue, Dublin.
RNID, MSc(Intellectual Disability),Dip.
Starting on the Research
Journey
Ageing is a new phenomenon that is being
experienced by individuals with an intellectual
disability (Bigby, 2005)
With increased longevity individuals with an
intellectual disability and dementia are
experiencing underlying medical conditions
similar to the general population (DeKnegt and
Scherder, 2011)
As a consequence they may experience pain
It has been suggested that pain is unreported,
underdiagnosed and/or untreated in individuals
with an intellectual disability (Turk et al, 2012)
Study Design
A Quantitative study was conducted
Using a self-reporting questionnaire
Inclusion criteria
• Nurses’ with two years post-registration
in their qualification
• Nurses’ with a minimum of six months
experience supporting an individual with
an intellectual disability and dementia
The Questionnaire
Through research a questionnaire devised by Beacroft and
Dodd(2010)was sourced
In collaboration with a Clinical Nurse Specialist in ageing and
dementia the questionnaire was reviewed and developed to
incorporate dementia
Permission was sought and obtained from Beacroft and
Dodd (2010)to use the questionnaire
The thirty two item questionnaire incorporated three
sections
• Participants qualification and nursing experience
• How participants manage their own pain
• How individuals with an intellectual disability and dementia
are supported in their pain management
Study Objectives
To identify nurses’ attitudes to pain and
how they manage their own pain
To identify the practice and the
knowledge of the nurses’ on pain
management for individuals they support
To determine the pain management
policies and procedures within the
organisation
Recruitment and Ethical Issues
Approach to recruitment
Application was submitted to A.I.T. Nursing Ethics
Committee
• The Director of Services within the organisation was
approached and approval obtained to conduct the
research
•
Post Ethical Approval
Having obtained approval to conduct the research
from the Director of Services, line-managers were
approached to identify potential participants
• Pilot study was conducted with three line-managers
• Potential participants were identified
•
Research Participants
Forty two nurses’ were approached from
certain residential settings, two community
homes and two day-care services
Ten nurses’ declined the invitation
There was twenty six female and six male
participants
An equal number of general and intellectual
disability registered nurses’ participated
The majority had a degree qualification and
had fifteen plus years nursing experience
Distribution of the questionnaires
and the analysis
Prior to the distribution of the
questionnaire, the researcher attended
local house meetings
Questionnaires were distributed via the
local line-manager
Informed consent was achieved by
participating in the study
The analysis of the data collected was
conducted using a statistical package for
the social sciences (IBM.SPSS)
The Findings
Research Aim
Outcome
•
•
•
•
•
•
To describe the nurses’ awareness of pain recognition and
management in individuals with an intellectual disability
and dementia
Findings were identified under the following
Observation of pain
Pain beliefs
Pain management
Communication
Health Action Plan
Training
Observation of Pain
•
•
•
•
All participants acknowledged observing
pain in an individual they support
Pain was identified by changes in the
individuals behaviour, sleeping patterns,
body/facial language and appetite
Two thirds of individuals supported
would self-report their pain
One third of individuals rely on the nurse
supporting them to interpret their pain
Pain Beliefs
Three quarters of participants believe that
individuals with an intellectual disability do
not have a higher pain threshold compared
to individuals without an intellectual
disability
• One quarter of participants do believe that
individuals with an intellectual disability have
a higher pain threshold
• Participants who held the belief that a higher
pain threshold exists, the majority are
registered general nurses with fifteen plus
years nursing experience
•
Pain Management
•
•
•
•
•
Majority of participants stated that pain is not
effectively managed in an individual they support
Participants strategies for managing their own
pain was not mirrored with strategies they use
with individuals they support
Participants would administer an analgesic first to
manage their pain
Participants would document pain , followed by
administering an analgesic when managing pain in
an individual they support
Alternative strategies where used by participants
and also with the individual supported but not to
the same extent or frequency
Communication
The main communication methods used by
individuals supported were word, speech
and gesture
• Two third of participants stated the
communication methods used were effective
• One fifth of participants support an
individual in their communication by using a
communication aid such as board-maker, a
communication passport or laimh
• Twenty six participants did not reply to this
question
•
Health Action Plan
•
•
•
•
•
The majority of individuals supported have a
Health Action Plan
Fifty per cent of participants identified that there
was no section on pain recognition in the Health
Action Plan, the remaining fifty per cent stated it
was present
Over fifty per cent indicated that the document
had information on pain management
The majority of participants indicated that the
section on pain is reviewed three monthly
The Health Action Plan currently in use within
the organisation does not contain information on
pain
Training
Three quarter of participants have
received no training in pain recognition
and management
• Remaining one quarter received it via the
degree course or external courses in
palliative care and dementia
•
Recommendations
•
•
•
•
•
•
The findings of this study presented evidence that the awareness of
nurses’ supporting individuals with an intellectual disability and
dementia in pain recognition and management are limited
It highlights the need for education and training in the areas of pain
recognition, pain management, communication, awareness of dementia
and the documentation that supports the individual with their
healthcare needs
An audit of the Health Action Plan should be conducted to evaluate its
content and address any additional information that maybe required
within the documentation
A clinical audit on current practices on pain recognition and
management should take place and the results used to highlight good
practices within the organisation
The introduction of a standardised pain management pack within the
organisation would support nurses’ in their practice and also the
individual in identifying their pain
Further research is required in the area of pain recognition and
management for individuals with an intellectual disability and dementia
And finally
References
Beacroft, M. and Dodd, K. (2010) Pain in people with learning disability in
residential settings- the need for change, British Journal of Learning Disability, 38,
201-209.
Bigby, C. (2005) Growing Old In: Grant, G., Goward, P., Richardson, M.,
Ramcharan, P. Editors. Learning Disability: A Life cycle approach to valuing
people, Berkshire: Open University Press, 663-84.
De Knegt, N. and Scherder, E. (2011) Pain in adults with intellectual disabilities,
Pain, 152, 971-974.
Turk, V., Khattran, S., Kerry, S., Corney, R. and Painter, K. (2012) Reporting of
health problems and pain by adults with an intellectual disability and their carers,
Journal of Applied Research in Intellectual Disabilities, 25, 155-165.