THE HEALTH AND SOCIAL CONTEXT OF INFANT
DEATH: REFLECTIONS FROM SOUTH AFRICA
by
Alyssa B. Sharkey
A dissertation submitted to Johns Hopkins University in conformity with the
requirements for the degree of Doctor of Philosophy
Baltimore, Maryland
September 2008
© Alyssa B. Sharkey 2008
All rights reserved
UMI Number: 3339996
Copyright 2008 by
Sharkey, Alyssa B.
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ABSTRACT
Statement of the Problem and Study Aim
Infant mortality is internationally recognized as one of the most important indicators
of health and development, yet high rates continue to plague many under-resourced
settings. In South Africa, overall infant mortality is estimated to be 54 per thousand with
rates up to 15 times higher among blacks than whites.
The aim of this study was to understand better the factors associated with infant
deaths in resource-poor settings of South Africa. The research objectives were to
document:
1. caregivers' understandings of the events leading up to the infant's death, the
accessibility and desirability of local health care, and their recommendations for
improving local care, and
2. the assessment of community leaders and health providers regarding the accessibility
and desirability of local health care, the factors they identified as associated with
infant death, and their recommendations for improving local care.
Methods
This study was exploratory and qualitative, using in-depth interviews with 50
caregivers who experienced an infant death and 19 key informants in two South African
communities, one rural and one urban. A biomedical assessment also was conducted to
provide an additional viewpoint on the factors associated with each death.
Results
Caregivers reported using a variety of settings and providers during their infants' final
illness including public and private allopathic providers, traditional healers, home
ii
remedies, and no care. The major factors found to influence care-seeking were
caregivers' living conditions and resources, health care access and quality, and
caregivers' explanatory models of infants' illnesses. There were important differences
between caregiver and biomedical models of infant illnesses and of 'what went wrong.'
However, assessments by both caregivers and clinicians indicated that, in many cases, the
infant's death resulted because of an interaction of several modifiable factors.
Conclusions
This study provides new information regarding the context in which infant deaths
occurred in two South African settings, motivations for caregivers' actions, and factors
that contributed to a breakdown in the health 'system' for these children. The study also
provides insights into how the health system can more effectively respond to the needs of
these families.
Committee Members:
Alternate Committee Members:
Peter John Winch, MD, MPH
Associate Professor and Chair of the
Committee
Department of International Health
Holly Allen Grason, MA
Associate Professor
Department of Population, Family and
Reproductive Health
Cynthia Schaffer Minkovitz, MD, MPP
Associate Professor and Thesis Advisor
Department of Population, Family and
Reproductive Health
Nancy Hutton, MD
Associate Professor
Department of Pediatrics
School of Medicine
Henry Mosley, MD, MPH
Professor
Department of Population, Family and
Reproductive Health
Katherine Clegg Smith, PhD
Assistant Professor
Department of Health, Behavior and
Society
111
ACKNOWLEDGEMENTS
This dissertation is the culmination of several years of active support and input from
various colleagues, friends, and family members. First, special thanks go to my advisor,
Cynthia Minkovitz, for providing such strong mentorship across the miles and for her
ongoing responsiveness, creative suggestions and careful and methodical review of every
application, manuscript and presentation I have prepared (and there have been many). I
am also grateful for early input on the study from other faculty members within PFRH,
including Donna Strobino, Jessica Burke, David Bishai, and Michael McQuestion.
Holly Grason, in addition to providing input on the study research methods and many
of my other academic and professional pursuits, has provided mentorship, support and
friendship over the past 15 years for which I am truly thankful. I can never repay her for
all her encouragement, advice, letters of reference, and hand-knitted baby clothes over
the years, as well as her recipe for chocolate covered peanut butter balls.
In addition, I thank Linda Adams and Kristi Willis for helping me navigate the
doctoral degree process, and especially for bringing such warmth and fun to it. Special
thanks also go to Woodrow 'Skip' Dellinger, who has been a friend and great source of
support starting with my very first visit to Hopkins in 1991, and with whom I have shared
many great conversations over lunches and dinners.
Within the broader Hopkins community, Peter Winch provided insightful comments
and guidance that have greatly improved the quality of this study and its products. With
enthusiasm and a strong passion for improving maternal and child health, he introduced
many ideas and concepts that were new to me, and I believe he has helped me to become
a more sensitive public health researcher. I am also grateful to my other committee
iv
members, Henry Mosley, Katherine Clegg Smith and Nancy Hutton, for their critical
reviews and genuine interest in supporting me and my research efforts.
My friends and fellow students Marjorie Opuni-Akuamoa, Ashley Schempf and
Angela Bayer have enriched my life with their support and camaraderie through these
past six years of learning, studying, and persevering.
I am also indebted to Rosemary Taylor of Tufts University. Dr Taylor provided
mentorship to me early in the dissertation process on qualitative research methods. She
was also a constant source of encouragement throughout the time I spent with her and I
am grateful that she so generously shared her knowledge and ideas with me.
In South Africa, senior researchers of the Good Start team - Mickey Chopra, Debra
Jackson, Tanya Doherty, and Mark Colvin - facilitated and contributed to every aspect of
this study. In particular, I am grateful to Mickey Chopra who first said, 'Hey Alyssa, I
have an idea for your dissertation study...' Each of these colleagues was extremely
helpful and supportive in providing guidance and a complete pleasure to work with.
In addition, members of the Good Start field research team were instrumental to this
study. In particular, Eric Cele and Gugu Nzimande carried out caregiver interviews with
incredible grace and sensitivity, and showed a deep compassion for every person with
whom they spoke. In addition, they endured my seemingly endless questions about the
meanings behind women's words, local customs, and life for black South Africans today.
I learned much from both Eric and Gugu and am grateful to have worked with them and
to have cultivated lasting friendships with them.
Special thanks go to the health providers, community leaders, and, particularly, the
caregivers who generously shared their experiences to inform this study. The interviews
v
with key informants were fascinating and enlightening. The interviews with caregivers
were at times heartbreaking but also awe-inspiring because of the strength these women
showed as they recounted what I imagine to be worst experience a person can endure. I
was, and remain, deeply touched by their stories. The southern African philosophy
known as 'ubuntu' states that, 'We are people through other people. Your pain is my
pain. I am because you are. You are because we are.' I have learned much about
humanity through these women.
I also thank Marian Jacobs of the University of Cape Town for first giving me the
opportunity to work in South Africa and, as a result, for changing the trajectory of my
life. Marian is a dear friend and inspiration to me in all that she has overcome in her life
and all that she does on behalf of the women and children of South Africa.
I thank my parents, Bill and Alison Wigton, for supporting whatever endeavor
(academic or otherwise) I have chosen to undertake in life and for giving me their
unconditional love and support. I am so lucky to have been born to them. In addition, my
in-laws Tom and Eileen Sharkey have been a constant source of encouragement in my
life. I am grateful to be a part of their family.
I could not have finished this degree without the love, strength and emotional support
of my husband Pat. He has been an inspiration through the success of his own academic
endeavors, but even more so by being the man and father that he is. I look forward to a
long, happy, and hopefully more relaxed post-PhD life with him.
Finally, I dedicate this dissertation to my son Thomas and my very new daughter
Kate, who have taught me just how deep a mother's love can be.
TABLE OF CONTENTS
ABSTRACT
ii
ACKNOWLEDGEMENTS
iv
TABLE OF CONTENTS
vii
LIST OF TABLES
ix
LIST OF FIGURES
x
CHAPTER ONE: INTRODUCTION
Study Aim and Research Objectives
Study Design and Site of Field Work
Key Findings
Dissertation Overview
2
3
4
5
CHAPTER TWO: BACKGROUND AND RELEVANT LITERATURE
Factors Relating to Infant Death
Infant Mortality and the Social Autopsy/Community Death
Audit Approach
Literature Relating to Other Aspects of the Research Domains
South Africa, Poverty and Infant Death
Study Settings
Significance of the Study
9
15
17
18
21
CHAPTER THREE: METHODS
Preparatory Steps
Partnership in study sites
Conceptual framework
Development of data collection instruments
Piloting of instruments and methods
Training of field staff
Study Advisory Group
Protection of human subjects
Data Collection
Data Analysis
25
25
27
29
30
32
33
34
38
43
CHAPTER FOUR: MANUSCRIPT 1: Pathways of Care-Seeking
during Infants' Final Illnesses in Under-Resourced South African
Settings
53
CHAPTER FIVE: MANUSCRIPT 2: Influences on Care-Seeking
during Infants' Final Illnesses in Under-Resourced South African
Settings
77
vn
8
CHAPTER SIX: MANUSCRIPT 3: What Went Wrong? Factors
Associated with Infant Deaths in Two Under-Resourced South
African Settings
104
CHAPTER SEVEN: IMPLICATIONS AND CONCLUSIONS
Overview of Study Findings
Limitations and Strengths
Implications for Research, Policy and Programs
Conclusions
134
137
141
148
APPENDICES
Appendix A: Key informant interview guide
Appendix B: Caregiver interview instrument
Appendix C: Caregiver interview instrument - newborn supplement (for use
with caregivers whose infants never left the birth facility)
Appendix D: Study Advisory Group members
Appendix E: Informed consent forms (English, Xhosa and Zulu versions) ...
Appendix F: Data abstraction form for medical records
Appendix G: South African Perinatal Problem Identification Programme
(PPIP) and Child Healthcare Problem Identification
Programme (Child PIP) code lists of avoidable and
modifiable factors
Appendix H: Detailed tables based on caregiver and biomedical assessments
of causes of death (Manuscript 3)
151
153
184
198
199
211
213
219
REFERENCES
224
CURRICULUM VITAE
239
vin
LIST OF TABLES
Table 2.1 Leading causes of death among infants, South Africa 2000
23
Table 3.1 Summary of Good Start final sample
46
Table 3.2 Summary of caregiver responses to participation in the study
46
Table 3.3 Summary characteristics of caregivers
48
Table 3.4 Summary of eligible caregivers, interviews completed,
exclusions and refusals
49
Table 3.5 Summary characteristics of key informants
49
Table 4.1 Characteristics of study settings
74
Table 4.2 Types of traditional healers used and treatments prescribed
74
Table 5.1 Characteristics of caregivers and infants
102
Table 5.2 Types of care provided to infants during final illness
102
Table 5.3 Factors influencing care-seeking during infants' last illnesses
103
Table 5.4 Problems identified relating to research domains and
potential responses
103
Table 6.1 Background characteristics of caregivers and infants
131
Table 6.2 Timing and place of death
Table 6.3 Deaths with associated caregiver/family, health care
access, and health care quality factors, as assessed by
caregivers and biomedical panel
Table 6.4 Biomedical classification of death as avoidable, unavoidable
or unable to determine based on caregiver report
132
IX
132
132
LIST OF FIGURES
Figure 2.1
Map of South Africa and study sites
Figure 3.1
Mosley & Chen (1984) analytical framework for the
23
study of child survival in developing countries
50
Figure 3.2
Original conceptual context
51
Figure 3.3
Conceptual framework: Millard's (1994) causal model
of child mortality
Sequence of care provided prior to infant death in
Umzimkhulu (N=22)
52
Figure 4.1
Figure 4.2
Sequence of care provided prior to infant death
in Umlazi (N=28)
x
75
76
CHAPTER ONE
INTRODUCTION
i
INTRODUCTION
The 'Child Survival Revolution' began in 1982 in response to recognition that infant
and child mortality was unacceptably high in many countries and that interventions to
reduce most of these deaths existed (The Bellagio Study Group on Child Survival 2003).
Although the impact of efforts resulting from this revolution was significant, today 9.7
million children continue to die each year, mostly from causes that are preventable
(UNICEF 2007). These deaths are concentrated in developing countries, and particularly
within the poorest households.
In response to this identified problem, the fourth Millennium Development Goal has
called for a reduction in the under-five mortality rate by two-thirds between 1990 and
2015 (United Nations 2007). Achievement of this goal will require both an improvement
in the quality of care provided to young children and the care-seeking behaviors of their
families, which have been shown to have a tremendous influence on infant health (Terra
de Souza et al 2000; Arifeen & Bangladesh 2001; Thaver, Ebrahim & Richardson 1990;
Thaddeus & Maine 1994; Uchudi 2001). The factors that influence care-seeking,
however, often are not well understood. Such information is critical for ensuring that
future policy and programmatic initiatives effectively address the constraints families
face and build upon enabling factors that promote appropriate care-seeking.
Study Aim and Research Objectives
The aim of this study is to understand better the behavioral, structural, and health
system factors that play a role in the deaths of infants in resource-poor settings of South
Africa. The research objectives are to document:
2
1. caregivers' understandings of the events leading up to the infant's death, the
accessibility and desirability of local health care, and their recommendations for
improving local care, and
2. the assessment of community leaders and health providers regarding the
accessibility and desirability of local health care, the factors they identified as
associated with infant death, and their recommendations for improving local care.
Study Design and Site of Field Work
This study was exploratory and qualitative, using in-depth interviews with caregivers
who experienced an infant death and key informants knowledgeable about local health
issues relating to women and children. Fifty interviews were conducted with caregivers
and 19 interviews were conducted with key informants. A biomedical assessment also
was conducted to provide an additional viewpoint on the health system and
caregiver/family factors associated with each death, and to determine whether or not the
death was avoidable. In addition, local administrative and population-based data were
collected in order to describe the context for each study setting as well as to obtain
additional information about the care infants received prior to death.
The study was conducted in two sites: Umzimkhulu, a sparsely-populated rural
community located in the former Transkei 'homeland' with an infant mortality rate
(IMR) of 99 per 1000 live births (Jackson et al 2006), and Umlazi, an urban township
located near the city of Durban with an estimated IMR of 60 per 1000 (Bradshaw &
Nannan 2004).
3
Key Findings
Caregivers in these settings chose a variety of care settings and providers during their
infants' final illness including public health services, private allopathic providers
(General Practitioners), traditional healers (Sangomas, Inyangas and Divine Healers),
over-the-counter and traditional home remedies, and no care. Most decided on their own
to seek additional care when their child's health did not improve, moving between public
and private providers, and between allopathic and traditional providers.
The various factors found to influence care-seeking were organized into three
domains. Structural factors represent aspects of a caregiver's community, household or
personal situation that influence their living conditions, resources and opportunities.
Health system factors relate to health care access and quality. Caregivers' explanatory
models of infants' illnesses represent their assessments of the severity and etiology of the
illness. Often caregivers reported a combination of factors occurring either concurrently
or sequentially that determined whether, when, and from where outside care was sought
during infants' final illnesses.
Although some caregivers were unable to assign a cause of death to their infants,
others identified clinical causes (e.g., pneumonia), clinical symptoms (e.g., 'vomiting'),
or externalizing causes (e.g., 'evil spirit'). Most causes of death assigned by a local team
of clinicians related to inadequacies in the care of women in labor and the resuscitation of
newborns, and preventable infectious diseases. Factors associated with deaths included a
range of actions, or inactions, of the caregivers themselves and inadequacies in the
accessibility and quality of local health services.
4
This study highlights the gap between caregiver and biomedical models of infant
illnesses and the factors associated with infant deaths. In addition, in most cases the
infant's death was found to be not the result of an isolated event but of an interaction of
several modifiable factors.
Initiatives developed to address access to care problems should ensure the efficiency
and adequacy of local emergency vehicle services, and consider expansion or
implementation of mobile services and community health workers, particularly in
informal settlement and 'deep rural' areas. Initiatives to improve quality of care should
aim to improve illness recognition and implementation of case management protocols,
referral criteria, and hospital admission and discharge criteria.
Initiatives developed to improve timely and appropriate care-seeking must take into
consideration how to improve utilization of health services, as well as determining how,
and whether, the health system can modify existing structural problems, including
women's lack of decision-making autonomy, as well as local explanatory models of
childhood illnesses that may not encourage care-seeking at biomedical services. As most
of the deaths were identified as preventable, prompt implementation of already wellrecognized strategies could have a significant impact on child survival in these settings.
Dissertation Overview
This dissertation is organized in manuscript format. Chapter two presents background
information including literature relevant to the problem of infant death as well as
literature relevant to the study methods applied, the settings within South Africa, and a
rationale for the study.
5
Chapter three presents the study methods including the preparatory stages of the
study, the conceptual framework, ethical considerations, and methods used for data
collection and data analysis.
Chapter four is a manuscript that describes the health care choices made and
treatment pathways taken by caregivers of infants who died.
Chapter five is a manuscript that describes the factors influencing how caregivers in
these settings selected among the health care alternatives available to them during their
infant's fatal illness.
Chapter six is a manuscript that presents caregivers' explanatory models and a
biomedical assessment of 'what went wrong' by examining the cause of death, the
various factors associated with the death, and whether or not the death was avoidable.
Chapter seven presents a summary of the results, key limitations and strengths, the
research, programmatic and policy implications, and the final conclusions of the study.
6
CHAPTER TWO
BACKGROUND AND RELEVANT LITERATURE
BACKGROUND AND RELEVANT LITERATURE
This chapter presents background information to the study, including literature
relevant to the major content areas and the research approach used. Studies reviewed
include those that seek to understand the factors influencing infant death, those that use a
social autopsy/community death audit approach, those that incorporate a maternal
narrative to understand child illness, as well as those that explore maternal/caregiver
care-seeking and understandings of their infant's health care and social supports
following their child's death. In addition, background information is provided on what is
known about the problem of infant death within South Africa and within the context of
the study settings. As this study is the first of its kind to be conducted in South Africa,
discussion also is provided on the significance of the study, including how it contributes
to current research by enhancing our understanding of why infant deaths are occurring.
Factors Relating to Infant Death
Various behavioral and social factors have been found to influence infant mortality in
developing countries. Numerous studies show the importance of maternal education
(DaVanzo & Habicht 1986; Charmarbagwala, Ranger, Waddington & White 2004;
Cleland & van Ginneken 1988; Victora et al 1992; Caldwell & McDonald 1982),
improvements in water and sanitation (DaVanzo & Habicht 1986; Habicht, DaVanzo &
Butz 1988; Golding, Greenwood, McCaw-Binns & Thomas 1994; Rahman, Rahaman,
Wojtyniak & Aziz 1985), and breastfeeding (DaVanzo & Habicht 1986; Habicht,
DaVanzo & Butz 1988; Habicht, DaVanzo & Butz 1986). Other studies demonstrate the
role of maternal nutrition, employment, marital status, hygiene behaviors, and behaviors
8
during pregnancy (Golding, Greenwood, McCaw-Binns & Thomas 1994; Greenwood &
McCaw-Binns 1994; Northrop-Clewes, Ahmad, Paracha & Thurnham 1998; Singh & Yu
1996; Sumits, Bennett & Gould 1996).
Still other research has linked infant death with poor health care quality, particularly
with respect to neonatal deaths (Finnstrom et al 1997; Howell 2008; Richardus,
Graafmans, Verloove-Vanhorick & Mackenbach 1998; Flegg 1982). Initiatives that seek
to improve pediatric assessment and management, such as the World Health
Organization's Integrated Management of Childhood Illnesses (IMCI) and Pocket Book
of Hospital Care for Children, were developed in response to this acknowledged
relationship. However, it also has been argued that medical care has a limited impact on
the health of a population, and that broader social issues have a more significant impact
(McKeown 1976). While this argument has been criticized, particularly in recent years as
medical advancements have expanded the ability of health care to save lives (Colgrove
2002), considerable research demonstrates a strong link between poverty and ill health
(Feierman & Janzen 1992; Packard 1989; Chopra, Neves, Tsai & Sanders 2007), and
between poverty and infant death in particular (Scheper-Hughes 1992; Horta de
Figueiredo Goulart, Somarriba & Xavier 2005; DaVanzo & Habicht 1986; Habicht,
DaVanzo & Butz 1988; Golding et al 1994; Rahman et al 1985).
Infant Mortality and the Social Autopsy/Community Death Audit Approach
Few studies examining infant death focus on the sequence of events leading up to the
child's illness, particularly as reported by families experiencing the tragedy. As Aguilar
et al (1998, p 1) state, '[i]t is not enough just to know the medical cause of a child's
9
death. There should be an investigation to discover what failed the child, either inside the
home or in the family's use of health services.' This type of investigation has been
referred to as a 'social autopsy' (Kallander et al 2008), the term employed within this
thesis study, a 'process investigation' (Anker et al 1999) or a 'community death audit'
(Patel et al 2007).
Studies conducted in several developing countries provide evidence of the success of
the social autopsy approach. For example, the non-governmental BASICS (Basic Support
for Institutionalizing Child Survival) Project has developed an instrument that
incorporates both a verbal autopsy protocol - widely used to determine the biological and
medical cause of death in areas where civil registration and death certification systems
are weak and where many die at home without contact with the health system (Anker et
al 1999) - and a process investigation. The process investigation examines the
experiences of caregivers when they attempted to provide care at home or obtain outside
help for their sick children. Information collected via the process investigation instrument
includes socioeconomic data as well as the daily occurrences, knowledge, intentions, and
practices during the child's illness.
To date, the BASICS process investigation method has been implemented in Guinea
(Schumacher et al 2002) and Bolivia (Aguilar et al 1998). Researchers report that the
participation of caregivers in assessing the quality of care in the community has been
found to be empowering for families and the open histories obtained through interviews
have provided a wealth of information useful for developing local interventions (Anker et
al 1999). In addition, Swedish and Ugandan researchers conducting a qualitative study in
Uganda have developed a related approach based on the BASICS process investigation
10
instrument that they call a social autopsy (Kallander et al 2008). The approach used in
this study aims to understand better the social and economic causes of death from
malaria, particularly with respect to home care and care-seeking, and, specifically, to
elucidate caregivers' understandings of malarial symptoms, practices relating to fever and
convulsions, and different sources of care.
A similar social autopsy instrument also has been implemented in Bangladesh by the
World Health Organization as part of the effort to evaluate the impact of the Integrated
Management of Childhood Illness (IMCI) initiative (Arifeen & Bangladesh 2001). Key
research domains in this instrument include home care and care-seeking behaviors during
the child's terminal illness, home care and care-seeking behaviors during the child's first
illness, responses from the health care system when care was sought, and the quality of
care received.
Three studies conducted in Brazil also have examined the circumstances surrounding
infant deaths, with a particular emphasis on mother's care-seeking behaviors (Terra de
Souza et al 2000; Horta de Figueiredo Goulart, Somarriba & Xavier 2005; Hadad, Franca
& Uchoa 2002). The instrument used in these studies includes both semi-structured and
open-ended questions on the causes of and circumstances surrounding the child's death,
the use of indigenous remedies and on all the contacts with health care providers that
occurred during the terminal illness. Terra de Souza et al (2000) report that the study
methods enabled them to develop locally and culturally relevant recommendations for
improving problems identified relating to poor quality of services, lack of maternal
recognition of child danger signs, and delay in seeking medical attention. In addition, the
11
authors suggested that the methods utilized be incorporated as part of an on-going
surveillance system to monitor the effectiveness of child health care in the region.
In 2007, Patel et al investigated the feasibility and acceptability of conducting a
community neonatal death audit in rural Uttar Pradesh, India. This research involved indepth interviews with family members of deceased neonates and focus group discussions
with both family and community members. The researchers reported the community
death audit approach to be both acceptable and feasible, and that it stimulated sharing of
views among community members as well as formal investigation of the local problem of
neonatal illness and death by community members.
Also in India, Bhandari et al (2002) used caregiver narratives obtained as part of a
verbal autopsy study to obtain insights into the processes underlying infant deaths. The
findings of this study included that caregivers were less likely to seek care for illnesses
that led to death during the infant's first week of life and less than half of severely ill
infants who presented for care were referred to hospital. In addition, the researchers
found that inappropriate or inadequate care was common among both allopathic and
traditional providers.
De Savigny et al (2004) also used caregiver narratives collected via verbal autopsy
during their study of care-seeking patterns for fatal malaria among children under age
five in southern Tanzania. Using this approach, the study revealed important influences
on care-seeking relating to local illness terminology and understandings of illness
etiology.
In Chile, Millan et al (1999) conducted in-depth interviews in conjunction with a
quantitative analysis to understand both biological and social factors associated with
12
infants who died from pneumonia. Twenty mothers of infants who died were interviewed
(cases) as were five mothers of infants who survived after being hospitalized with
pneumonia during the same period in the same area (controls). There were no differences
between the cases and the controls with respect to the mothers noticing signs of illness or
the mothers' knowledge of how to prevent pneumonia. More than half of the children
who had died at home had not shown signs of pneumonia.
Kallander et al (2008) also examined child deaths due to pneumonia in a study carried
out in Uganda. These researchers report having used both verbal and social autopsy
approaches; however, the social autopsy component they used was largely semistructured and therefore was deemed inadequate in determining the social processes
affecting care-seeking.
In a study of deaths among children under five years in the Siaya District of Kenya,
Garg et al (2001) interviewed 97 caregivers about their deceased children's symptoms
and duration of illness, the types of health providers consulted during the terminal illness,
and specific aspects of each health care visit. The authors reported that most children
received care outside the home but only 6 percent received inpatient care and almost all
died at home. Many of the providers seen were traditional healers, and follow-up care and
referral to hospitals were infrequent.
In addition, in rural Pakistan, Bhutta et al (no date) reported their use of a verbal
autopsy in conjunction with a social autopsy to identify both numbers and probable
causes of deaths through reconstructing the events surrounding them. In this study,
caregivers' accounts of the illness and events that led to the child's death were recorded.
Additionally, information was obtained to describe the cause of death and the socio-
13
economic and cultural factors that might contribute to an infant's death. This study
revealed that almost half of deaths were associated with health system shortcomings and
poverty, and another third were associated with influences on care-seeking including
family traditions, cultural practices and education. In particular, the study reported
caregivers' need for consent from the father or a male family member of the child,
discouragement of religious leaders, a lack of understanding of the severity of illness,
poor knowledge of available health care and preferences for traditional homemade
remedies.
From the developed country setting, several studies report the utility of a similar
method used within the United States' National Fetal and Infant Mortality Review
(FIMR) Program. Studies from Minnesota (Fogarty, Sidebottom, Holtan & Lupo 2000)
and Boston (McCloskey et al 1999), for example, assert that the program's use of
maternal home interviews (also referred to as the 'community process' component)
successfully identifies a range of social, clinical and systems factors contributing to infant
deaths, which, in turn, facilitates the development of specific and locally relevant
interventions for improving maternal and child health services. Key domains of the home
interview conducted as part of the community process component include pregnancy
habits (e.g., prenatal care, nutrition, weight gain and other health habits), delivery
complications, health of other babies, socio-demographic information on the family
(including age, race, employment, living situation, income), and life changes or social
supports both prior to the birth of the baby and following the baby's death (National Fetal
and Infant Mortality Review Program 2005).
14
Following their 'community process' assessment, McCloskey et al (1999) concluded
that in-home maternal interviews revealed important information relating to the women's
medical risk factors during pregnancy, poor continuity of care, unaddressed social needs
(especially relating to housing instability and domestic abuse), and poor patient-provider
communication. The researchers were able to develop a set of recommendations for
improving the local system of care based on these findings. They emphasize the value of
the approach in contributing 'to understanding in an in-depth way how social, clinical,
and system factors interact to produce risk and infant death' (p 176).
While the full FMR process includes the regular clinical review of cases of infant
and fetal death by multidisciplinary teams, even FIMR materials refer to the maternal
home interview as the 'cornerstone' of the program because it enables the voice of the
bereaved parent to reach the health and human service community at large (Schaefer,
Noell & McClain 2002).
Literature Relating to Other Aspects of the Research Domains
Other studies that describe approaches and research domains complementary to some
of those utilized in this study tout their usefulness in understanding the circumstances
surrounding death. For example, narrative analysis is a reliable technique to understand
the unique experiences of families (Fiese & Wamboldt 2003, McAdams 1993). Worden's
Task-Based Model of Mourning (2002) is one framework that has been used by health
clinicians in talking with grieving families. This model suggests that approaching parents
with a statement such as, 'Tell me how your baby died' is a supportive statement that
facilitates discussion.
15
Other research has focused on developing a better understanding of care-seeking
during a child's last illness in order to identify priority public health responses to the
problem of child death (Amarasiri de Silva, Wijekoon, Hornik & Martines 2001; Baqui et
al 1998; Sutrisna et al 1993; Mesko et al 2003; Stall, Holman & Schuchat 1998; Parashar
et al 2000; Honigfeld & Kaplan 1987; Mbonye 2003).
In addition, studies have cited the importance of understanding caregivers' social
supports during a child's illness or following death. One study of 1,985 New Zealand
families, for example, found that 'visits to and by friends or relatives were associated
with a significantly reduced risk of SIDS after controlling for potential confounders (odds
ratio = 0.70; 95% CI=0.52, 0.96)' (Mitchell et al 1994). In addition, Kavanaugh, Trier &
Korzec (2004), in their secondary analysis of data from two US studies on perinatal loss
report that a lack of social support following the death of an infant is linked to
complicated or chronic parental grief. Another study focusing on families experiencing
SIDS in Japan concluded that 'when a child dies..., how the people around the bereaved
family treat them affects the quality or degree of the psychological trauma of the
bereaved family' (Sawaguchi et al 2003, p 190).
As Kleinman (1992, p 132) has argued, an analysis of the 'interplay between social,
psychological and physiological factors in health and sickness' gives 'access to aspects of
suffering that are obscured and distorted by standard biomedical and epidemiological
studies.' Indeed, use of this method can deepen and broaden our understanding of the
problem of infant death.
16
South Africa, Poverty and Infant Death
Located on the southern tip of Africa, South Africa has a population of just less than
48 million, 24 percent of which lives on less than US$1 per day (UNDP 2007). South
Africa's poverty level, while lower than many other African countries, is high compared
to most other middle income countries (Seekings 2007). Poverty coexists with great
affluence in the country, and, as a result, South Africa's Gini coefficient for income
inequality is one of the highest in the world at 57.8 (UNDP 2006). Fourteen years into
post-Apartheid democracy, this inequality remains highly correlated with race (Seekings
2007).
According to the racial categories designated under Apartheid, Africans constitute
about 79 percent of the total population, whites and 'Coloured' (or 'mixed race') people
constitute about 9 percent each, and Asians/Indians constitute about 2 percent (Statistics
South Africa 2005). However, while almost all whites live in formal housing, only 55
percent of Africans do, and while almost all whites have access to piped water, only 80
percent of Africans do (Statistics South Africa 2003). Health-related statistics also vary
significantly by population group. For example, the HIV prevalence ranges from 13
percent among Africans to less than two percent among the Coloured and Asian/Indian
populations, and less than one percent among whites (South African Department of
Health 2006).
Today the leading causes of death among infants are HIV/AIDS, low birth weight and
preventable infectious diseases often associated with poverty such as diarrhea, respiratory
infections, and neonatal infections (Table 2.1). Unfortunately important knowledge gaps
17
about infant mortality remain, as cause of death statistics in the country generally are of
poor quality (Patrick & Stephen 2005).
Efforts to improve the current knowledge gap in both infant and child mortality in
South Africa have been initiated with two programs to audit deaths that occur in health
facilities: the Perinatal Problem Identification Programme (PPIP) and the Child
Healthcare Problem Identification Programme (Child PIP). These programs currently are
implemented in 51 hospitals throughout the country and aim to ensure that all inpatient
deaths are identified and assigned a medical cause of death (Stephen & Patrick 2007). In
addition, efforts are made through the audit to determine the social, nutritional and HIV
status of each child who dies, as well as the factors associated with the death that are
considered modifiable. While these programs constitute the most reliable data sources for
infant and child deaths (Solarsh & Goga 2004), unfortunately, they are not able to
provide information on the circumstances surrounding child deaths that occur outside of
facilities.
Study Settings
Two sites within South Africa were included in this study in order to apply the
research approach in areas diverse with respect to location, population density, infant
mortality rate (IMR), HIV prevalence, and local health infrastructure. Figure 2.1 shows a
map with the location of both study settings.
Umzimkhulu: Umzimkhulu is a rural community located in a part of the former Transkei,
one of ten 'homeland' areas designated for Africans and considered self-governing by
South Africa's apartheid government. Although not recognized internationally as an
18
independent state, the South African government revoked the citizenship of its residents
in 1976 while, at the same time, maintaining control over its internal decisions. After the
country's first democratic election was held in 1994, the Transkei and the other nine
homelands were reabsorbed into South Africa. Today, approximately 550,000 people live
in the area with an average population density of 69 people per square kilometer (Health
Systems Trust & University of the Western Cape 2004). The area remains extremely poor
with limited resources: only 12 percent of residents are employed and 38 percent of
households have no income at all (South African Department of Health 2005). The 1996
October Household Survey concluded that 75 percent of residents lived in poverty, 93
percent did not have access to safe drinking water, 73 percent of households used pit
latrines and only four percent used buckets or flush toilets (Centre for Social Science
Research 1997). In addition, during the rainy season (October-March) many roads are
impassable (South African Department of Health, Medical Research Council, Macro
International 2002).
Missing, unreliable and incomplete data hinder the validity of the local health
information system (Loveday 2004). As a result, data are not readily available on the
major causes of infant death within the area. However, a 2003 study found that the
perinatal mortality rate was 63 per 1,000 live births and that 9.3 percent of infants were
born low birth weight (Jackson, de Groot & Masilela 2003). In addition, the IMR is
estimated to be 99 per 1000 live births and 28 percent of pregnant women are estimated
to have HIV (South African Department of Health 2005).
The local health infrastructure is comprised of 15 fixed clinics, one community health
center, two district hospitals that provide generalist services to inpatients and outpatients,
19
one specialist (tuberculosis) hospital (Day & Gray 2006), and two government-run
mobile clinics. According to one study, there were only three functional vehicles
designated for health services in 2004, and these were much more likely to be used for
administrative purposes than for health programs (Bamford, Loveday & Varkuijl 2004).
There is a severe shortage of emergency vehicles as well (South African Department of
Health 2002). In addition, the majority of clinics do not have electricity or water, and a
poorly functioning telephone system hinders communication among facilities (Health
Systems Trust 2004). Frequent drug 'stock-outs' have been documented, many physician
posts remained unfilled, and there is a high turnover of nursing staff (Loveday 2004).
Umlazi: Umlazi is a peri-urban township located 13 kilometers outside of the city of
Durban in the KwaZulu Natal Province. Umlazi is typical of many other township areas
in South Africa that were designated as "African" under the Group Areas Act (Act 36 of
1966) of the Apartheid system. Black South Africans looking for employment
opportunities near the city of Durban were unable to live in so called "white" or
"coloured" (i.e., mixed race) areas and therefore set up peri-urban townships nearby.
Unfortunately, the influx of residents to these townships was not matched with the
provision of an adequate housing and sanitation infrastructure (De Satge 2002).
With approximately two million residents, Umlazi is the largest township in the
Durban metropolitan area and the second largest township in South Africa (KwaZulu
Natal Provincial Government 2004). Only 47 percent of Umlazi's residents are employed
(Mohamed 2002) and 16 percent of households have no income at all (Cullinan 2002).
However, Umlazi's residents have benefited from government development efforts since
20
1994: today almost of all Umlazi's roads are tarred and most homes, even in informal
'squatter' areas, have electricity (Cullinan 2002).
Again, data on specific causes of infant death are lacking for the Umlazi community
but the IMR is estimated to be 60 per 1,000 and the perinatal mortality rate is estimated to
be 37 per 1,000 (Bradshaw & Nannan 2004). In addition, 47 percent of pregnant women
are estimated to have HIV (Tlebere et al 2007).
Umlazi's local health infrastructure is comprised of 17 fixed clinics and one 1200 bed
secondary-level hospital (KwaZulu Natal Department of Health 2006). This hospital is a
referral center for local clinics and surrounding areas and handles an estimated 18,000
deliveries each year (Mullick, Beksinksa & Msomi 2005).
Significance of the Study
This study builds upon the methods and knowledge garnered from previous 'social
autopsy' and 'death audit' studies in order to produce new information regarding how the
health system and local community can better respond to the needs of impoverished
families with sick infants in South Africa. It is one of the first efforts in the country to
develop a better understanding of infant deaths that occur both in and outside of facilities.
The study used in-depth interviews with caregivers and key informants to highlight
the complex pathways and underlying mechanisms that precede the majority of infant
deaths in high risk communities, including those which may have been previously
undetected by quantitative research. As a result, new information is revealed regarding
the context in which infant deaths occur, motivations that lead to decisions, actions or
non-actions on the part of families, and differing viewpoints on factors that contribute to
21
a breakdown in the public health system. These will be useful insights for local clinical
and public health practitioners that highlight the particular realities associated with the
social context in which these families live. For example, the information generated with
this approach may help some practitioners to better comprehend issues like noncompliance among their clients.
Since Umzimkhulu and Umlazi are among South Africa's most destitute
communities, this study provides new insights into how to improve services for families
at the greatest risk of poor outcomes. The methods complement existing information
regarding the types of infant deaths that occur and, most importantly, enhances
understanding of why they occur. Such a process does not currently exist in South Africa,
and it is hoped that the information gleaned from this study illustrates its potential value
to local health officials in helping to figure out ways of eliminating preventable infant
deaths. In addition, it is hoped that because the approach incorporates community
perspectives and involvement, it will facilitate locally relevant and acceptable responses
to identified needs. Further, although this study certainly will be most relevant to the
local communities in which it was conducted, this approach can inform approaches
elsewhere by engaging the local community in the process of problem identification and
programmatic response.
22
Table 2.1: Leading causes of death among infants, South Africa 2000
Cause
Percent of Male
Infant Deaths
30.8
15.9
10.8
7.4
5.8
3.9
3.6
3.4
1.4
1.2
HIV/AIDS
Low birth weight
Diarrheal diseases
Other perinatal respiratory conditions
Lower respiratory infections
Neonatal infections
Birth asphyxia and trauma
Protein energy malnutrition
Congenital heart disease
Neural tube defects
Percent of Female
Infant Deaths
33.7
15.0
11.0
7.1
6.3
3.7
3.1
3.2
1.5
1.1
Source: Bradshaw, Bourne & Nannan (2003)
Figure 2.1: Map of South Africa and study sites
.o.i.TMiPftuurs *
JL
JL
Cape Town
»
Port Elizabeth
23
urban
Umlazi
Umzimkhulu
CHAPTER THREE
METHODS
METHODS
This chapter describes the steps taken to prepare for initiation of the study including
establishment of a local partnership in the study sites, development of a conceptual
framework, development and piloting of the data collection instruments and methods,
training of field staff, recruitment and involvement of a local Study Advisory Group, and
protection of human subjects. In addition, methods used to collect and analyze the data
are described.
Preparatory Steps
Partnership in study sites: This study was conducted in conjunction with an ongoing
South African study of maternal and infant health known as 'Good Start,' a joint project
of the School of Public Health at the University of the Western Cape, the Medical
Research Council, the Health Systems Trust, and the national Department of Health.
Collaboration with Good Start provided this thesis study with an existing research
infrastructure including the ability to utilize experienced local field staff and to benefit
from Good Start's well-established and respected reputation within both Umzimkhulu
and Umlazi.
Good Start began its first phase in 2003 as a situational analysis that aimed to: 1)
determine factors influencing the utilization of and barriers to utilization of maternal
health services, 2) determine levels of awareness of risk factors associated with poor
maternal and perinatal health outcomes, and 3) determine the health seeking behavior of
both HIV positive and HIV negative pregnant women (Health Systems Trust &
University of the Western Cape 2004). During phase 1, daily recruitment over a period of
12 months yielded a sample size of 516 mother-baby pairs in these two sites (192 in
25
Umzimkhulu and 324 in Umlazi).1 Following recruitment, Good Start home visits by
community health workers (CHWs) occurred on a weekly basis up to three months after
birth, and three additional visits by Field Researchers occurred during infancy. The Field
Researchers collected information from each participant on socio-demographics, HIV
disclosure, morbidity and mortality (of both the mother and infant), knowledge of risk
factors associated with poor outcomes, frequency of postnatal health service contacts, as
well as blood specimens to check for HIV transmission. Throughout the first phase, the
Field Researchers and CHWs recorded 70 encounters with families who reported that
their infants had died. However, it was outside of the scope of the Good Start study to
assess the circumstances surrounding these deaths. As a result, the current thesis study
was initiated in conjunction with phase 2 of Good Start, which began in 2005.
Good Start's phase 2 is a three year study that aims to implement and assess the
effectiveness of a community-based peer support counseling intervention on rates of
exclusive infant feeding (i.e., exclusive breastfeeding and exclusive formula feeding) and
the uptake of Prevention of Maternal to Child Transmission of HIV (PMTCT) services.
In each site, the population was divided into "clusters" (10 in Umzimkhulu and 14 in
Umlazi) similar with respect to socio-economic characteristics such as population density
(each cluster has approximately 3000 adults) and housing type. A cluster sampling
approach was considered appropriate because evaluation of the intervention will take
place at the community level.
The Good Start team randomized clusters to receive either the intervention or to
act as a control. Within each cluster, Peer Supporters in the community and Antenatal
1 The Good Start study also is conducted in a third site: Paarl, a rural, commercial farming area in the
Western Cape Province. Paarl was not included in this thesis study due to a low number of infant deaths.
26
Recruiters based in clinics and hospitals sought to identify all women who were at least
seven months pregnant or who had given birth within the last week, and who had no
plans to move outside the study area over the next year. Recruitment of women into the
Good Start study took place between September 2005 and September 2007. In total, 1529
women were recruited in Umzimkhulu (382 into the intervention group, 1147 into the
control group), and 1748 women were recruited in Umlazi (532 intervention, 1216
control) (Table 3.1).
During phase 2, women living in the control group cluster areas have not received
information from Peer Counselors about PMTCT services or infant feeding, although
they have received visits from Peer Counselors who provide information on available
social grants and the processes necessary for accessing these grants. All Peer Counselors
(regardless of study arm) encourage women to access local preventive MCH services but
neither group provides information regarding care during acute illnesses. Women receive
up to five visits from Peer Counselors (through 10 weeks postpartum) and six visits from
Field Researchers (at 3, 6, 12, 24, 36, and 52 weeks postpartum) who collect data on
socio-demographics, satisfaction with PMTCT services, HIV disclosure and uptake of
HIV-specific care (when appropriate), infant feeding patterns, anthropometric
measurements, health care-seeking behavior, morbidity, and 7-14 day recall of diarrheal
episodes. When infant deaths were identified by Peer Counselors or Field Researchers,
the infant's primary caregiver was invited to participate in an additional interview
regarding the child's health care and final illness.
Conceptual Framework: This study did not use an a priori conceptual framework, but
instead first proposed a 'conceptual context' to guide the analysis of data. This conceptual
27
context incorporated elements of the Mosley & Chen (1984) Analytic Framework for
Child Survival (Figure 3.1) within an ecological model (such as that described by
Bronfenbrenner 1979).
In their seminal essay, Mosley & Chen recognized the inter-connectedness of the
roles of socioeconomic and cultural factors (frequently cited in social science research)
and biologic disease processes (recognized by medical researchers) in child deaths. Their
framework integrates both approaches, showing how distal socio-economic and cultural
factors operate through a limited set of proximate (or intermediate) determinants that
directly influence the risk of poor health and the outcome of disease processes (Figure
3.1). Proximate determinants include maternal factors (age, parity, birth interval),
environmental contamination (air, food/water/fingers, skin/soil/inanimate objects, insect
vectors), nutrient deficiency (calories, protein, micronutrients), injury (unintentional and
intentional), and personal illness control (personal preventive measures and medical
treatment).
Although over 20 years old, the Mosley and Chen framework is still widely used in
research that seeks to understand better the determinants of child survival. For example,
in their review of the literature on socio-economic inequalities in child health, Wagstaff
et al (2004) use this framework to elucidate the distribution of cause-specific deaths
among infants and children. In another recent study, Machado and Hill (2003) employed
a modified version of the framework to relate early infant morbidity with subsequent
mortality in Brazil. In the United States, the framework has been used to understand
differences in pregnancy outcomes among women of different ethnicities (Singh & Yu
1996). Other researchers have developed an adapted version of the Mosley & Chen
28
framework, for example, to incorporate the distal role of government policies and actions
(Claeson & Waldman 2000) or to apply the framework to a particular issue under
analysis (Sastry 1996; Katende 1994).
The original conceptual context employed the Mosley & Chen framework within an
ecological model to illustrate how the various systems influencing infant health function
within one another, and the child, at the center, is an integral part of each system. The
ecological model has been used extensively to illustrate the complex influences on a
myriad of health, social and human development issues (Garbarino & Sherman 1980;
Kohn 1963; Tan, Ray & Cate 1991; Pinon, Huston & Wright 1989).
This original conceptual context (Figure 3.2) worked well to guide the development
of instruments and data analysis although the final conceptual framework that better
reflects the data obtained is based on a complementary model developed by Millard
(1994). As illustrated in Figure 3.3, Millard's model organizes the various factors relating
to infant mortality into three tiers to illustrate how socio-economic and cultural factors
influence intermediate factors (such as child care practices and behaviors in the
household) which in turn influence proximate biomedical causes of death. In addition, the
Millard model focuses specifically on preventable child deaths.
Development of data collection instruments: Instruments utilized in previous 'social
autopsy' studies (described in more detail in Chapter Two: Background and Relevant
Literature) provided the basic template for the caregiver instruments used in this thesis
study. They were reviewed and modified to ensure the collection of information that was
relevant to the current study objectives and culturally appropriate to the South African
context. Information collected through the caregiver instruments focused on the socio-
29
economic situation of the family, the progression of the child's illness leading to death,
the first and last interactions the child had with various health providers preceding his or
her death, understandings of the infant's health care, social supports available to the
caregiver, and any recommendations the caregiver had for how the public health system
and local community can respond better to the needs of families with sick infants. Openended questions were used to understand caregivers' explanatory models and
recommendations. These were followed up with semi-structured questions used to clarify
information obtained during caregiver narratives. Each Field Researcher (interviewer)
was instructed to ask the respondent the semi-structured questions without reading the list
of possible answers (which were included only to reduce interviewer burden) and only if
the information was not already provided by the caregiver.
The in-depth interview guide used with key informants in this study was developed
specifically to obtain varying views on the research domains, particularly with respect to
the accessibility and desirability of health care and services available locally to women
and children, the behavioral, structural, and health system factors associated with infant
death, and their recommendations for improving health care in each site (Appendix A).
This list of open-ended questions was sometimes modified based on informants'
responses and issues arising from caregiver interviews as the study progressed.
Piloting of instruments and methods: The draft caregiver instruments were pilot tested
in March and April 2005 by the Good Start study team which received previous IRB
approval from the University of the Western Cape's Research and Ethics Committee.
Five interviews were conducted in Umlazi and ten were conducted in Umzimkhulu.
30
During piloting, special emphasis was placed on ensuring the feasibility, cultural
acceptability, clarity of questions, and usefulness of information obtained. Two versions
of instruments to be used with caregivers were reviewed and tested: a 'main' instrument
to be used with caregivers whose babies first became sick at home (Appendix B) and a
modified version to be used with mothers whose babies died shortly after birth without
leaving the health facility (Appendix C). As a result of piloting, changes were made to
the data collection instruments in order facilitate probing and to obtain a more complete
account of the events leading up to the infant's death.
In addition, the pilot test provided valuable information regarding the approach to be
used. For example, it became apparent that it would be most appropriate to have local
Field Researchers administer all caregiver interviews with no one else present. Even the
presence of an outsider (i.e., a western Caucasian woman) in the home during the piloting
was found to be problematic: the consultation of traditional healers and the influence of
'witchcraft' or 'ancestors' in a child's death were topics only mentioned in interviews
that the Field Researchers conducted on their own with no one else present in the room.
One of the Field Researchers confirmed that this could be a problem, stating that a
caregiver might not feel comfortable mentioning this practice or these feelings in front of
an outsider 'because it is known that you, as a white person, would not understand it'
(personal communication, Eric Cele, Field Researcher, Health Systems Trust, April 26,
2005). Further, it was thought that by having to speak with only one person in the room,
respondents would be more likely to speak candidly about their experiences and
perspectives.
31
Piloting also confirmed that all interviews should be conducted in the respondent's
predominant local language (Xhosa or Zulu) and that, due to poor levels of literacy, the
informed consent forms should be read to the participants (who obtained a copy and read
along) prior to starting the interviews.
The instrument used to guide interviews with key informants was not piloted.
Training of field staff: During March 2005, an on-site training was conducted with the
Good Start Field Researchers responsible for carrying out the caregiver interviews. The
training included:
•
an overview of the background, research objectives, and significance of the study
•
an overview of qualitative research methods including what they aim to achieve
and how they differ from quantitative methods
•
how to make initial contacts with families (how to approach the home, who
should be interviewed, when to avoid an interview, necessary preparations prior
to each interview)
•
how to conduct the interview (an in-depth review of the interview instrument, the
importance of probing, ethical considerations, how to ensure caregiver privacy
and comfort, understanding the grief experience, how to end the interview)
•
necessary steps to take following the interview (post-interview assessment and
data security)
•
interviewer emotional "self-care," and how to ensure each interviewer's own
safety in the field.
In addition, all study materials were reviewed with the Field Researchers and input
was obtained on their suggested changes to improve the cultural sensitivity of the
32
informed consent forms and interview instruments, as well as the quality of the data
collected. Changes to the materials were made as appropriate. Field Researchers then
participated in a role playing exercise in order to anticipate how to respond to particular
issues that might arise during interviews. Field Researchers were free to ask questions
and make comments throughout the training.
Follow up training occurred during subsequent on-site visits in November 2005,
March 2007 and January 2008, and communications between the student researcher and
Field Researchers were ongoing throughout the study.
Study Advisory Group: Prior to its initiation, the study purpose and methods were
presented in meetings with key stakeholders in each site. This involved meetings with the
local chiefs (Umzimkhulu only), and local government officials and health department
staff (both sites). These presentations informed stakeholders about the research, clarified
how the data would be used, and what the potential policy and program implications of
the research might be. During these meetings, a request was made to present the study's
key findings and recommendations following the completion of the study. In addition,
during the initial consultations, several individuals from each site were recruited to
participate in a study advisory group (SAG). Key activities of the SAG have been helping
to identify the most appropriate individuals to act as key informants in each site as well as
reviewing the themes and key issues emerging during analysis. This is a form of 'member
checking,' in which persons involved with the study, or familiar with the study setting,
provide clarification and further explanation of the developing analytic framework, as
well as a critical assessment of whether or not there appear to be factual errors or
implausible conclusions.
33
Members of the SAG have been consulted during each on-site visit, and their various
suggestions and comments have been incorporated into the data analysis process. The
SAG also has provided guidance as to the most appropriate and effective ways to
disseminate findings following completion of the study. The complete list of SAG
members is included in Appendix D.
Protection of human subjects: Prior to initiation of this study, every effort was made to
ensure the protection of human subjects. Ethical approval was obtained from the Johns
Hopkins Bloomberg School of Public Health Institutional Review Board and the
Research, Ethics and Study Leave Committee at the University of the Western Cape,
South Africa. The informed consent process, compensation provided to respondents, risks
and benefits to participants, and methods to deal with adverse events are described below.
Informed Consent: As described previously, caregivers were identified during
routine home visits by Good Start Peer Supporters or Field Researchers. When a Good
Start worker learned that an infant died, she first expressed her condolences and then
explained that a separate study was underway to better understand the experiences of
families who suffered this loss. She explained the purpose of this study and invited the
caregiver to participate in an additional interview. If the infant's death occurred more
than a month before this meeting but not longer than a year before, the worker would
either request to conduct the interview immediately or would set up a later, mutuallyagreed upon time for the interview. Families who declined to participate were not asked a
second time.
Key informants were identified by community leaders and local Good Start Field
Researchers as being influential in the community and knowledgeable about issues
34
relating to infant and child health in the community. Key informants were contacted by
telephone, provided information about the purpose of the study and the expectations
relating to the interview, and, if they agreed to participate, were asked to specify a
convenient time and locale for meeting. Occasionally, individuals invited to participate as
key informants referred the researcher to other individuals in the community whom he or
she considered to be more appropriate for participation.
Two qualified translators were employed to translate and adapt the consent forms into
Xhosa and Zulu. The accuracy of each translated instrument was then reviewed and
certified by an independent organization specializing in translation services. English,
Xhosa and Zulu versions of the caregiver and key informant consent forms are included
in Appendix E.
All participants obtained a copy of the informed consent document (including
information about the study's aims, potential risks and benefits, compensation, and
information regarding whom to contact for additional information about the study) that
was signed by both the Field Researcher and the respondent. When the respondent was
unable to sign her name, she signed an "X' in the appropriate space on the document. A
duplicate copy of the informed consent document (also signed by both the researcher and
respondent) was kept securely on record throughout the course of the study in a locked
cabinet in the local Good Start study offices.
Compensation: All caregivers that participated in an interview were given
compensation for their time regardless of whether or not the interview was completed.
This study provided the same compensation package provided to participants in the larger
Good Start study: in Umlazi, where most families live in the proximity of grocery stores
35
and shopping areas, caregivers each received 40 South African Rands (approximately
US$7.50). In Umzimkhulu, where local stores are not easily accessible for many families,
a food parcel with an approximate value of R40 was provided to each participant. The
food parcel consisted of 5 kg corn meal, 2.5 kg sugar, 375 ml. extra crunchy peanut
butter, 1 kg dried corn, 1 kg red speckled sugar beans, and 2 liters vegetable oil.
Key informants did not receive financial compensation for their participation.
Risks to Participants: Because the death of an infant is a highly sensitive subject,
there was concern that some respondents would become uncomfortable, anxious or
emotionally upset during the interview. To minimize this risk, the types of questions
included in the interview instrument were designed to be as sensitive as possible. In
addition, each Field Researcher was trained to ensure that the interviews were conducted
in a non-judgmental, engaged and professional manner and to listen with empathy to the
participant's story. Further, for any respondent who exhibited emotional distress at any
time during the interview, the Field Researcher was trained to counsel the respondent,
and then ask if she or he would prefer to either terminate the interview or to resume the
interview at a later date. Although no respondents asked to terminate or postpone the
interview, there were some participants who needed breaks to regain composure, or to be
counseled by the Field Researcher.
As participant feedback has been described as one of the standards for validity in
qualitative research (Stiles 1993), following each interview, researchers asked the
caregivers for their feedback on participating in the study. Specifically, caregivers were
asked the following:
'We are very interested in whether or not you feel it was a positive experience to talk
to us about your loss. For example, did you feel comfortable sharing your thoughts
36
today? Do you think you will be able to help other families by sharing your story?
Any comments or criticisms you have that might help us to make our study better
would be very helpful.'
An overview of caregiver responses to this question is included in Table 3.2. Many
caregivers responded that although it was difficult, they found the interview experience
generally to be positive (16 of 22 in Umzimkhulu and 11 of 28 in Umlazi). However, a
phenomena known as 'performance feedback inflation' has been identified in the
literature which occurs when participants are asked to provide their feedback directly to
researchers (i.e., face-to-face) rather than indirectly (Waung & Highhouse 1997). It is
therefore possible that some caregivers in this study who found the interview experience
to be generally negative did not feel comfortable sharing this with the Field Researcher
who had just administered the interview.
With respect to key informants, there were no identified risks to participating in this
study as their identity was kept confidential and their responses remained anonymous.
Benefits to Participants: Aside from the minor compensation provided to caregivers,
there were no direct benefits to participants in this study. However, all participants were
told that their input would assist in the development of recommendations to improve the
system of health services for women and babies in the community. Further, all
participants will be invited to attend an open community meeting to hear the study results
and recommendations after study completion.
Methods to Deal with Adverse Events: As described above, efforts were made to
protect participating caregivers against the potential psychological risk of recounting an
emotionally stressful experience particularly by using experienced local Field
Researchers who were trained to identify and respond to signs of distress. In addition, the
37
confidentiality of family members and deceased infants was assured by only recording
infant first names, respondent initials, and designating each child with an identification
number in order to link individual infants across death certificate and medical record
abstraction forms, and caregiver interviews.
Efforts also were made to protect key informants against any legal, social, or
psychological risks by excluding personal information from any resulting reports or
articles so that it is not possible to identify who the respondent is or for which
institution/organization the respondent works.
Finally, following each interview, the recorded data were reviewed immediately and
then stored securely. No data were ever shared with other participants or individuals
outside the study. All audiotapes and records of the information obtained in interviews
were kept in a locked drawer at the local Umlazi and Umzimkhulu offices of the Good
Start study. Following the completion and final reporting of the study, all audiotapes
from the study will be destroyed. The information obtained in this project will be used for
scientific or educational purposes only.
Data Collection
Both primary and secondary data were collected in this study. The secondary data
included locally available data that were reviewed in order to describe the study
population and the location and scope of maternal and child health (MCH) services
available to local residents. Available data from the district health department and various
health facilities provided an overview of the availability and utilization of MCH services.
38
In addition, data were obtained from medical, Good Start, and death records which
were used to validate some of the information obtained via in-depth interviews about
health care received. For example, in both sites consent was obtained from families to
review the medical records for deceased infants from local clinics and hospitals. When
obtained, data were abstracted regarding the infant's history of health service contacts for
illness(es) and preventive health care. In order to protect confidentiality, the data
abstraction forms for medical records were coded with a child identification number that
was later linked to the caregiver interview (Appendix F). Unfortunately, few hospital
records could be obtained due to the complexity of the record keeping system at local
facilities (medical records are catalogued by patient hospital record numbers which are
kept by the patient or patient's family) and logistical problems (i.e., few caregivers had
their child's hospital record numbers available during the interviews). Many of the
medical records that were accessed were incomplete while other records were missing
completely from the facility files. The poor quality of records in South African public
health facilities has been noted in other studies involving medical record reviews
(Ashworth et al 2004; Kahn, Tollman, Garenne & Gear 2000; Kahn, Tollman, Garenne &
Gear 1999; Wigton 1999).
Data collected via Good Start routine home visits (available in Stata format) were
reviewed and incorporated into this study as well. Some Good Start data were used to
validate information provided by the caregivers (e.g., some background/demographic
information), while other data collected by Good Start were used in place of asking
caregivers for redundant information. This was done in order to reduce caregivers' time
burden during the infant death interviews and also when the information was of a
39
sensitive nature. For example, maternal HIV status (collected verbally during Good Start
recruitment interviews) was matched with the caregivers participating in this study so that
it was not necessary to ask the respondent for this information more than once.
Finally, secondary data available in death certificates were reviewed as well. During
each interview with caregivers, Field Researchers asked the respondent if she obtained a
death certificate for the deceased infant and then asked to review the certificate when one
was available. Death certificates were only available for 3 of 22 infants in Umzimkhulu
and 14 of 28 infants in Umlazi.
Primary data were collected via interviews with caregivers of infants who died and
with key informants (community leaders and health professionals). The sampling and
recruitment methods used are described in more detail below.
Sampling and recruitment of caregivers: This study involved in-depth interviews with
caregivers who had an infant (i.e., a child less than 365 days of age) die while under their
care and who were residents of one of the two study sites. Because this thesis study was
linked to the larger Good Start Study, the sample was generated from the same 24
clusters, and all identified caregivers were participants in the Good Start study.
Following the practice used in other studies to interview mothers of deceased infants
(Aguilar et al 1998; McCloskey et al 1999; Schaefer, Noell & McClain 2002), caregivers
were not contacted sooner than one month and not longer than one year following the
infant's death. These other studies indicate that this time frame is both respectful of the
familial grieving process and cognizant of the need to maximize caregiver recall. "When
the infant's mother was deceased or otherwise not available, an attempt was made to
interview the other individual in the household who was the primary caregiver for the
40
infant. When the mother or the other person who was the infant's primary caregiver was
not available, an interview was not conducted. A maximum of two attempts were made to
contact any individual family in order to identify an appropriate participant.
Since the eligibility criteria included having an infant in the house who died in the
previous year, most caregivers were of reproductive age (range 17-44 years of age),
although one caregiver (a grandmother to the deceased child) was 53 years of age.
Indeed, most caregivers interviewed were the infants' biological mothers; only two
caregivers (one in Umzimkhulu and one in Umlazi) were not (Table 3.3).
Potential participants were identified when the death of an infant was discovered
during one of the routine home visits by a Good Start Field Researcher or when a Peer
Counselor (each of whom maintained active surveillance of the health status of infants in
the community) learned of an infant death and notified a Good Start Field Researcher. In
order to recruit participants, the Field Researcher expressed her condolences, explained
the purpose of this study, and invited the caregiver to participate in an additional
interview regarding the child's health care and final illness. The original intent was to
interview 30 caregivers in each site and ultimately, efforts were made to interview all
caregivers in the Good Start sample who experienced an infant death. However, the final
sample included only 22 caregivers in Umzimkhulu and 28 in Umlazi due to logistical
issues involving a loss of field staff, travel difficulties (particularly during the rainy
season), and the distances between homes (particularly in Umzimkhulu). Several
additional interviews were completed but eventually excluded from the sample because
the death was later determined to be a stillbirth (i.e., some women were identified by peer
supporters in the community as having experienced a 'baby death' but when the Good
41
Start Field Researcher went to conduct the interview, it was discovered that the baby had
in fact been a stillborn). In addition, caregivers who reported that their infant died shortly
after birth in the hospital but before discharge (7 Umzimkhulu, 4 Umlazi) were excluded
from the analysis of influences on care-seeking (Manuscript 2).
Other reasons identified caregivers were excluded include:
•
the baby was alive when the Field Researcher went to home for interview
•
the caregiver relocated outside of study area
•
the Field Researcher was unable to locate caregiver's home
•
the caregiver lived in an area where Field Researchers were previously hijacked
•
the mother of infant was deceased and no one else in the home was appropriate to
interview as a primary caregiver
•
the caregiver refused participation.
While this final sample is smaller than originally planned, it is important to note that
no new themes were emerging in interviews as the data collection neared its completion.
The final numbers of eligible caregivers, interviews completed, exclusions and refusals
are included in Table 3.4.
Sampling and recruitment of key informants: In-depth key informant interviews were
conducted with community leaders and health providers working in Umzimkhulu and
Umlazi in order to obtain additional insights and diverse perspectives. Criterion-based
(purposive) sampling was used to include individuals working within the public health
system and individuals working outside the public health system whose work was
thought to impact maternal and infant health in the community. The eleven key
42
informants interviewed in Umzimkhulu and the eight interviewed in Umlazi included
nurses, community health workers, traditional healers, and local leaders (Table 3.5).
As stated previously, key informants were contacted by telephone, provided
information about the purpose of the study and the expectations relating to the interview,
and, if they agreed to participate, were asked to specify a convenient time and locale for
meeting. Occasionally, individuals invited to participate as key informants referred the
researcher to other individuals in the community whom he or she considered to be more
appropriate for participation.
Data Analysis
Framework Analysis, developed by Ritchie and Spencer (1984), guided the analysis
of qualitative data in this study. Framework is a content analysis method that was
developed in the context of applied policy research (i.e., research aiming to meet specific
information needs and provide outcomes or recommendations) and facilitates the
systematic analysis of data through five key stages:
1. Familiarization - the whole or partial transcription and reading of the data;
2. Identifying a thematic framework - the initial coding framework (developed and
refined during subsequent stages) which is developed both from a priori issues and
from issues emerging during familiarization;
3. Indexing/Coding - the process of applying the thematic framework to the data, using
numerical or textual codes to identify specific pieces of data which correspond to
differing themes;
43
4. Charting - creating charts of data based on headings emerging from the thematic
framework (charts can be either thematic across all respondents or by case for each
respondent across all themes); and
5. Mapping and interpretation - the process of searching for patterns, associations,
concepts, and explanations in the data, in order to create typologies, refine the
conceptual framework and develop strategies/recommendations.
Framework allows for the inclusion and exploration of a priori as well as emergent
concepts. As a result, themes are developed both from the research questions and from
participants' accounts. Although Framework can be used to generate theories that can be
tested elsewhere, its main focus is on providing an accurate description and interpretation
of what is happening in a specific setting.
The analysis of qualitative data to determine 'what went wrong' in each death
(Chapter Six: Manuscript 3) required an additional step. For this analysis, a panel was
convened comprised of three South African clinicians: a registered nurse with a specialty
in neonatal nursing and PhD in Epidemiology, a medical doctor with qualifications in
medical sociology and public health, and a medical doctor with a qualification in
pediatrics who is currently employed as a consultant to the South African Child PIP and
PPIP programs (described in more detail in Chapter Two: Background and Relevant
Literature). Each panel member read through a subset of cases and gave an opinion on
the patient, administrative and provider factors associated with each death based on those
used in the Child PIP and PPIP programs (Appendix G). Each case then was analyzed
carefully by examining the signs and symptoms of the illness as described by the
caregiver, as well as actions taken at home and when seeking care, and the timing of
44
these actions. When possible, the panel member identified one or more possible causes of
death and assigned the term 'avoidable,' 'unavoidable' or 'unable be determine' to the
death. When discrepancies arose among the biomedical interpretations of a case, the case
was reviewed again until a consensus was reached. Half of the total cases (25) were
assessed by two different clinical reviewers to check for inter-rater reliability. Where
differences existed, cases were reviewed again until a consensus was reached.
Additional analytic techniques and activities: Following each caregiver interview, a
short 'post-interview' assessment was completed by the Field Researcher. This
assessment asked the Field Researcher to record whether or not another individual was
present or within hearing range during the interview, as well as any other comments or
observations she had regarding the interview (e.g., about the home, the family, the way
the interview went, non-verbal interactions). Ongoing discussions with Field Researchers
were held throughout data collection in order to confirm information obtained, or to
clarify specific questions resulting from the interview.
In addition, throughout data collection, a reflexive journal was kept to record ongoing
reflections on methodological issues, study progress, field notes and on the student
researcher's own influences on the study. This journal was used to facilitate analytic
insight as the data were collected.
All qualitative data were entered, cleaned and managed using the NVivo qualitative
software program. The analysis was ongoing and identified both a priori and emergent
themes and patterns.
45
Table 3.1: Summary of Good Start final sample
Total mothers enrolled in intervention arm
Total mothers enrolled in control arm (peer support)
Infant deaths recorded within intervention arm
Infant deaths recorded within control arm
Umzimkhulu
(10 clusters)
382 (42 HIV+)
1147
25
18
Umlazi
(14 clusters)
532 (153 HIV+)
1216
23
50
Table 3.2: Summary of caregiver responses to participation in the study
Responses to whether or not participation was a positive
experience, caregiver felt comfortable sharing her
thoughts, caregiver felt her story could help others, any
other comments or criticisms
Umzimkhulu
It has been a very painful experience. It would be good if the
stories that are shared by women who lost their babies could
improve the manner in which we are treated in hospitals and
clinics.
I think sharing my story could help other families but talking
about my baby hurt. But this is a study that could help the
community.
I did feel a bit uneasy but I managed to control myself because
I have accepted it.
Although this was a positive experience, I felt hurt when
talking about my baby's death. The study could help other
families who have sick infants. The study is good in a way that
it will help families with sick infants to quickly seek help
before their state of health becomes worse.
I felt it was a positive experience although the interview
reminded me of my baby.
I was comfortable because I believe that this story could help
in correcting the mistakes that are happening in health
facilities.
I was comfortable with the interview and have accepted my
loss.
I never had problems. I am fine.
I was comfortable with sharing my story. I needed to talk with
someone about it so that it will completely heal. I also feel that
my story could help other families with sick babies.
There is no problem in talking with you but I forgot some of
the things that might help me to give you more information. I
will be able to share my story with other people but I am a shy
person and I don't talk much.
It has been ok talking with you so that you know how it is in
our hospitals, that the care is not alright at all.
I was comfortable with sharing the story of my baby's death
with you. I have nothing to criticize about the study.
Yes I feel better now than before and talking about it, it heals. I
feel more comfortable about taking about my baby's death.
It is positive because Good Start has helped me accept my
[HIV] status. Talking about my baby's death is very helpful
and I have enjoyed talking with you.
46
Generally
Positive
Neutral/
Mixed
Generally
Negative
X
X
X
X
X
X
X
X
X
X
X
X
X
X
Responses to whether or not participation was a positive
experience, caregiver felt comfortable sharing her
thoughts, caregiver felt her story could help others, any
other comments or criticisms
I did not have a problem sharing information because the peer
supporter had told me about you. I have come to terms with
what happened.
I was comfortable talking about the loss of my baby. I feel that
sharing my story could help other families with sick infants. I
have nothing against the study. It is good.
The interview helped in making me able to share my
experience of the loss. I felt great that I was able to talk about
it.
I have been comfortable with sharing my story with you. I feel
that I would be able to help other families with sick infants or
pregnant women by sharing my story.
This interview made me happy as I was able to share my
feelings. I just hope that whatever happened to me does not
happen to other people.
I felt fine about everything we discussed.
It is good talking to you about my loss because it heals me and
it gives me peace.
Response missing
Umlazi
It was difficult to talk about my experience.
It was a painful experience to share the experience but I have
accepted it.
It was a painful experience because I was starting to forget.
It was the first time today that I spoke to someone about the
death of my child. It helped me release tension although it was
a painful experience.
Apart from bringing back memories of the child that [were]
hurtful, I did not have a problem.
This interview made me feel sad and at the same time happy
that I was able to share experiences of my loss. This helps
release emotional stress.
I was ok, I did not feel anything.
I was hurting but I feel it is the right thing to do.
I was able to talk about my experience and I hope that the
government is going to do something about our health system.
It was painful but helpful because I could share my experience
with somebody.
Sharing my experience was difficult especially when it comes
to talking about the events leading to his death. But it was a
good experience because I had to talk about it.
I felt comfortable talking about it because it was not for the
first time that I spoke about it. Although it was painful but I
have accepted it.
I just hope and wish that whatever I shared with you today will
be helpful. But talking about the loss - it was painful but I have
accepted it.
I am still unsure but think that talking helped me.
It was helpful because I was able to share my experiences.
I did not feel bad because I was talking to people that I know.
47
Generally
Positive
Neutral/
Mixed
Generally
Negative
X
X
X
X
X
X
X
unknown
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
Responses to whether or not participation was a positive
experience, caregiver felt comfortable sharing her
thoughts, caregiver felt her story could help others, any
other comments or criticisms
Some of the things we discussed have enlightened me that
there were things which I should have known about my baby's
illness.
It helped me to talk about the experience.
It helped me to talk about the experience and this helps to
release some stress.
I felt a bit relieved now that I talked about the experience. It is
better to talk about it than to keep it inside.
I did not have a problem sharing my experience with you.
The experience of talking about my loss has helped.
Talking about my experience of loss helped me release stress.
It was the first time that I spoke about my experience today. It
may help me sleep.
It was a positive experience for me because I was able to share
with another person besides my family about my loss.
Talking about my baby's loss did not bother me because I have
accepted it. It was easy for me to talk about it.
I have no comment.
Response missing
Response missing
Generally
Positive
Neutral/
Mixed
Generally
Negative
X
X
X
X
X
X
X
X
X
unknown
unknown
unknown
Table 3.3: Summary characteristics of caregivers
Characteristics
Maternal caregivers (N)
Grandmother caregivers (N)
Caregiver ages in years (range)
Maternal
Grandmother
Age unknown
Maternal parity
1
2-4
>5
Any other children died
No
1
>2
Unknown/missing
Education
None
Primary
Secondary or more
Unknown
Marital status at recruitment
Single
Married
Cohabiting
Widowed
48
Umzimkhulu (N=22)
21
1
Umlazi (N=28)
27
1
17-36
44
4
17-36
53
6
14
6
2
17
10
1
18
4
0
0
24
2
1
1
0
4
13
5
0
1
18
9
7
12
0
0
20
1
0
0
Characteristics
Divorced/Separated
Unknown/missing
Maternal HIV status at recruitment (obtained verbally)
Known positive
Unknown/negative
Umzimkhulu (N=22)
0
3
Umlazi (N=28)
0
7
4
18
12
16
Table 3.4: Summary of eligible caregivers, interviews completed,
exclusions and refusals
Umzimkhulu
43
Umlazi
73
19
16
3
12
Caregiver relocated/not found/ living in dangerous area
0
7
Caregiver screened but not eligible
8
17
Caregiver refused participation
4
1
No one available for interview
0
3
Total number of eligible caregivers with deceased infants
Interviews completed
Good Start intervention arm
Good Start control arm
Exclusions
Table 3.5: Summary characteristics of key informants
Study Site
Umzimkhulu
Umlazi
Position/Job Title
Headwoman (Induna)
Community Member
Community Health Worker
Nurse
Headman (Induna)
Community Clinic Committee Member
Matron/Head Nurse
Chief
Community Health Worker
Traditional Healer (Sangoma)
Traditional Healer (Sangoma)
Nurse
Traditional Healer (Inyanga)
Ward Chairperson
Ward Deputy Secretary
Traditional Healer (Divine Healer)
Traditional Healer (Sangoma)
Matron/Head Nurse
Nurse
49
Gender
Female
Female
Female
Female
Male
Female
Female
Male
Female
Male
Female
Female
Male
Male
Female
Male
Male
Female
Female
Figure 3.1: Mosley & Chen (1984) analytical framework for the study of
child survival in developing countries
Socioeconomic determinants
y
i r
Maternal
factors
Healthy
Nutrient
deficiency
Environmental
contamination
Injury
y
Sick
iL
Prevention
Personal illness
control
V
i'
|
/
Treatment
1
50
Growth
faltering
'\
^
<*
Mortality
Figure 3.2: Original conceptual context
j j | i j | j B IIMII H I rvri
• i l i l H ) i nun nits
l'i ii\im:il Dfli-riniiiiiiiLs
Transportation
Ciiregivcr's
explanatory
model of the
illness
mm
Caregiver
.luloiiamy in
household
crision-making
r
Nutrition
Caregiver's
health
Caregiver's
understandings
•of/previous
exjicriencos with
services
llllillll llllillll
Inlormalion
from fin lilv/
commit lit v
re: serv CCS
Picvetuiw
caie
Cnngi'.mliil
ihnoiniiiliiic*
:W-»»
f»
51
Figure 3.3: Conceptual framework:
Millard's (1994) causal model of child mortality
Social, economic, political,
cultural processes and
structures
Ultimate Tier
HH decisionmaking
Household
food security
Intermediate Tier
Child care practices,
behaviors, food distribution
in household
Inadequate
diet
Proximate Tier
Settlement
pattern
Exposure to
pathogens
Immediate biomedical
causes
(malnutrition, infection)
child
mortality
52
CHAPTER FOUR
MANUSCRIPT 1:
Pathways of care-seeking during infants' final illnesses
in under-resourced South African settings
53
Abstract
Objective: To examine care-seeking during infants' final illnesses in under-resourced
South African settings to inform potential strategies for reducing infant mortality.
Methods: In-depth interviews were conducted with caregivers of deceased infants in a
rural community (22 in Umzimkhulu) and an urban township (28 in Umlazi). Nineteen
in-depth interviews also were conducted with key informants to ascertain opinions about
local health care and other factors contributing to infant death.
Results: Most caregivers whose infants became sick at home reported taking their sick
children to a public facility (hospital or clinic) at some point during the final illness (22 in
Umlazi, 7 in Umzimkhulu) although no caregivers reported accessing a public clinic at
any point in Umzimkhulu. Traditional healers also were utilized (4 in Umlazi, 8 in
Umzimkhulu), as were private allopathic providers (7 in Umlazi, 5 in Umzimkhulu), and
over-the-counter and traditional home remedies (11 in Umlazi, 10 in Umzimkhulu). Only
two caregivers (both Umzimkhulu) reported using no care prior to their infant's death.
Conclusions: Caregivers chose a variety of care settings and providers to assist them
during their infants' final illness. Strategies for reducing infant mortality should be based
on local care-seeking practices and therefore efforts should be made to improve illness
management practices in the home and to better integrate all types of providers used.
keywords health care seeking behavior, infant mortality, traditional medicine, qualitative
research, South Africa
54
Introduction
The relationship between care-seeking and infant and child health in developing
countries is well established (Amarasiri de Silva et al 2001; Baqui et al 1998;
Frankenberg 1995; Mbonye 2003; Taffa & Chepngeno 2005; World Health Organisation
1991), though much of the available literature focuses on the relationship between health
and care-seeking from western medical services only. Many families choose among
several types of providers - including those who operate outside of what is commonly
considered the 'health system.'
Some studies have examined treatment seeking choices and the 'pathways' taken by
caregivers during children's final illnesses in developing country settings (Aguilar et al
1998; Bhandari et al 2002; de Savigny et al 2004; Garg et al 2001; Schumacher et al
2002; Sutrisna et al 1993; Terra de Souza et al 2000). These studies suggest that careseeking is often 'pluralistic,' drawing on a variety of allopathic and indigenous
treatments.
Medical pluralism has a long history in South Africa, as in other countries. One
reason is that many colonial governments were unable, or unwilling, to provide medical
care to all citizens and therefore traditional healers and practices continued to serve those
for whom western services were unavailable or unaffordable (Feierman 1985; Vaughan
1991; Packard 1989). Another reason is the historically adaptive and inclusive nature of
African healing traditions and customs (Feierman & Janzen 1992). African traditional
healers in particular have accepted many biomedical practices as complementary to their
own (Vaughan 1991; Janzen 1992; Ngubane 1992).
55
Today, South Africa's free but over-burdened public sector competes with both viable
traditional and allopathic private sectors (Ntuli & Day 2004). The demand for services by
private General Practitioners (GPs) is considerable, even among those for whom user fees
would seem to be an obstacle (Soderland, Schierhout & van den Heever 1998).
Unfortunately, in many settings the quality of care received from these private providers
has been found to be substandard for treating childhood illnesses (Tawfik, Northrup &
Prysor-Jones 2002).
Traditional healers are also an important source of care for pregnant women and
families with young children in many African settings (Brugha & Zwi 1998; Tawfik,
Northrup & Prysor-Jones 2002), including South Africa (Kale 1995; Veale, Furman &
Oliver 1992). This may be true particularly for those whose view of health incorporates
social and spiritual dimensions that biomedicine typically does not address (Feierman
1985; Hewson 1998; Vaughan 1991; Young 1979).
The World Health Organisation (2002) suggests that additional research to improve
our understanding of caregivers' specific patterns of accessing care will promote our
ability to develop appropriate programmatic responses to preventing child morbidity and
mortality. For example, determining the extent to which caregivers first try to manage
infant illnesses in the home, or the extent to which their initial point of contact is a private
allopathic provider or traditional healer, will enable us to identify priority issues for
health education, practitioner training programs, or initiatives to promote collaboration
and referral systems across providers. This paper describes the treatment pathways taken
by caregivers of infants who died in two under-resourced areas of South Africa: a rural
community and an urban township.
56
Methods
Settings: The two study sites differ with respect to their location, population density,
infant mortality rate (IMR), and HIV prevalence (Table 4.1). The local public health
infrastructure also differs between the two sites. Umzimkhulu is served by 15 fixed
clinics, one community health center, two district hospitals that provide generalist
services to inpatients and outpatients, one specialist (tuberculosis) hospital (Day & Gray
2006), and two government-run mobile clinics. Umlazi is served by 17 fixed clinics and
one 1200 bed secondary-level hospital (KwaZulu Natal Department of Health 2006).
Data sources and sample: Two sources of primary data, caregivers who experienced an
infant death in the preceding year and key informants, provided information about the
health care alternatives available to families with sick infants. Caregivers were identified
within the sample of an ongoing randomized controlled trial ('Good Start'). Between
September 2005 and December 2007, Good Start's peer supporters in the community and
antenatal recruiters based in clinics and hospitals identified all women in the sites who
were at least seven months pregnant or who had given birth within the last week.
Routine home visits conducted by Good Start field researchers to assess the health of
the mother and baby occurred throughout the child's infancy. When an infant death was
identified, field researchers asked the infant's primary caregiver to participate in an
additional interview regarding the child's health care and last illness.
Criterion-based sampling also was used to conduct interviews with community
leaders and health providers working in either of the two sites who were knowledgeable
about health issues relating to local women and children. The 11 key informants
interviewed in Umzimkhulu included two community health workers, two traditional
57
healers, one village chief, two village headmen, two community members, and two public
sector nurses (one hospital-based and one clinic-based). The eight key informants
interviewed in Umlazi included three traditional healers, two local government officials,
and three public sector nurses (two hospital-based and one clinic-based).
Data collection: Between December 2006 and November 2007, caregivers were
interviewed using a pre-tested instrument defined elsewhere as a 'social autopsy'
(Kallander et al 2008). Caregivers reported background information about their families,
households, and distance to local services. They then described their pregnancy and
antenatal care (mothers only), labor and delivery care (mothers only), and the infant's
illness that led to death (all caregivers). After each narrative, caregivers were asked a
series of structured questions to confirm the sequence of events and reasons specific
actions were taken. Interviews were conducted Xhosa and Zulu and then translated into
English by bilingual, trained field researchers.
Key informant interviews were conducted in March 2007 and documented
informants' assessments of local health care accessibility and quality. Most informant
interviews were conducted in English; in some cases (3 in Umzimkhulu, 1 in Umlazi) an
interpreter translated between English and Xhosa or Zulu.
Data analysis: Kleinman (1980) views the health care system as a cultural system that
integrates all health-related components of a society (popular, professional, and folk).
Consistent with that approach, the analytic framework applied here incorporates public
health services (i.e., clinics and hospitals), private independent medical doctors ('general
practitioners' or 'GPs'), traditional healers, home remedies and treatments, as well as the
option of providing no treatment.
58
All qualitative data were entered, cleaned and managed using NVivo 7.0. Themes and
patterns emerging during analysis were explored in subsequent interviews. In addition, a
local Study Advisory Group provided critical assessments of themes and key issues
emerging during analysis and the conclusions drawn.
Ethical approval: Ethical approval was obtained from the Johns Hopkins Bloomberg
School of Public Health Institutional Review Board and the Research, Ethics and Study
Leave Committee at the University of the Western Cape, South Africa.
Results
The final sample included 22 caregivers in Umzimkhulu and 28 in Umlazi. One
eligible caregiver refused participation. All participants were mothers of deceased infants
except two grandmothers who were their infants' primary caregivers. Infants' ages at
death ranged from a few minutes to 43 weeks.
The various types of care utilized during infants' final illnesses are described below
along with the proportion of respondents reporting using the care.
Public health services: In this sample, all mothers interviewed reported that they
attended ANC services at least once during their pregnancy, and all but one in
Umzimkhulu (who saw a GP), attended government clinics or hospitals. Most mothers
(18 of 21 in Umzimkhulu and 25 of 27 in Umlazi) reported giving birth in a public
hospital. Of these mothers, several reported that their babies died shortly after birth prior
to discharge or on their way home from the hospital (nine in Umzimkhulu, five in
Umlazi).
59
Caregivers of infants whose final illness began at home were asked to describe the
steps they took to care for their child. In Umlazi, 22 of 23 caregivers whose children first
became sick at home reported taking the infant to a public clinic or hospital at some time
during the final illness. In contrast, seven of 12 Umzimkhulu women reported taking their
sick infant to a hospital when the child became sick at home, although for no women was
this the first point of care. In addition, no Umzimkhulu caregivers reported taking their
child to a clinic during the final illness.
Traditional healers: There are an estimated 200,000 traditional healers in South Africa,
and it is estimated that at least 70 percent of South Africans consult them for care
(Department of Health, Medical Research Council, Council for Scientific and Industrial
Research 2004). Three types of traditional healers practice in the study sites: Inyangas herbalists who rely primarily on knowledge of muti (traditional medicines made of herbal
or animal products) to heal patients; Sangomas - diviners who obtain guidance from their
ancestors (through possession/channeling, throwing bones, and interpreting dreams) to
detect illness or provide advice to clients and who may also use muti; and Divine Healers
- practitioners who use spiritual intervention to prevent or cure disease.
Key informants reported that traditional healers' patients first pay a consultation fee
(called 'ukuhlola' in Umzimkhulu and 'ugxa' in Umlazi) which costs between 50-300
South African Rands (ZAR), or approximately US$7-40 in 2008. Treatment fees are paid
separately, and can vary greatly depending on the treatment prescribed. For example,
muti costs between 10-25 ZAR, while other treatments (such as having a traditional
healer conduct a home visit or sacrificing a cow) can cost thousands of ZAR.
60
Despite the associated costs, key informants in both sites reported that traditional
healers are widely available, accessible, and desirable to families (Box 1).
Box 1: Selected key informant comments on
the popularity of traditional healers
We as black people, we also believe in cultural things, something like
'ubuthakathi' [bewitchment]. So when the baby is sick, maybe the child
is crying a lot and, you know, you're giving the baby food, and the baby
doesn 't want to eat and he just keeps on crying and you do everything
that you can and then you say, 'Oh this child has something else.' That
happens a lot here. People report those conditions. (Community Health
Worker, Umzimkhulu)
I have worked in this department for about 10 years. We have had
mothers wanting to take the child from here, wanting us to disconnect
oxygen, she wants to take the child away because the traditional healer
told them that the child is possessed by the dead people [ancestors]. So
the dead people are sitting on them. Their spirits are with them. So they
perform a sort of a ceremony to cleanse them. You'll find that the parent
doesn't want to stay in the hospital believing that you are delaying the
child. So they demand us to remove the child from the oxygen so that
they will go to the healer to perform the ceremony, and then come back
with the child. Usually you try and convince the mother and say that
they baby might die before she reaches the main gate. So, usually we try
and calm them down. Sometimes, you find, you can convince them. Some
do listen to us, some just don't. (Hospital Nurse, Umlazi)
Key informants who were themselves traditional healers reported providing services
for a variety of child health problems. As one Inyanga in Umlazi stated,
It can be any type of sickness for the baby. I am sure that I can try my best [to
solve the problem] and I succeed most of the time. Sometimes the child is in
there [during pregnancy] but it's not moving its legs and I do something to
make the child healthier. All such things.
Another traditional healer, a Sangoma in Umzimkhulu, stated,
Some of the babies they come to me with an African disease and J am using
African herbs to treat the baby. But most illnesses come to me: losing weight,
diarrhea, won't eat, won't take breast... I use the ancestral spirits so I don't
have this problem diagnosing when it is ok or not ok to use the herbs.
61
In spite of the impressions of key informants that traditional healers are widely used,
only four of the 28 caregivers in Umlazi and eight of the 22 caregivers in Umlazi reported
using healers (Table 4.2). These healers prescribed various treatments, including burning
herbs for inhalation and/or drinking by the baby, prescribing tablets for consumption by
the baby, or 'isihlambezi' for women to drink or bathe in during pregnancy to facilitate
labor and delivery. Most caregivers who consulted traditional healers during their child's
final illness said they associated the child's symptoms with pathogenic agents or events
occurring outside the body such as 'evil spirits,' termed 'externalizing causes' by Young
(1979).
Because of the negative outcome, however, some caregivers expressed regret about
choosing to consult a traditional healer rather than allopathic services. As one
Umzimkhulu mother stated, 'I feel that it would have been better if I went to the doctor
first. If it happens that I have another baby I will immediately take the baby to the doctor
if there's something wrong with the baby.' However, a similar sense of regret was
expressed by some caregivers whose infants died in the hospital. One mother in Umlazi
stated, 'Because people say my child suffered from traditional illnesses, I think I would
[instead] take my child for traditional help the next time.'
General practitioners: An estimated 30 percent of uninsured South Africans consult
independently operating, private sector doctors, known locally as general practitioners, or
GPs (Palmer et al 2003; Chabikuli et al 2002). Key informants stated that patients in the
study sites pay between 120-150 ZAR for a GP consultation. However, informants stated
that although GPs often are seen as desirable, they are rarely used because of these fees.
62
Indeed, in this sample, few caregivers reported seeking care from GPs for their sick
infants (five in Umzimkhulu and seven in Umlazi).
Among those who did use a GP, only six (two in Umzimkhulu, four in Umlazi) went
there first for treatment, while the others (three in Umzimkhulu, three in Umlazi) went
there only after they perceived that their child's first treatment did not help. The account
of one Umlazi caregiver is provided in Box 2.
Box 2:18 year old Umlazi mother's account of her child's last illness
My son started his illness after one week after immunization. He had a
temperature so I took him to the clinic and was given panado syrup which did
not help. I then took him to a GP who also gave panado which did nothing. I
took him to a second GP who gave him a lot of medication (panado,
multivitamins, and for cough) but that did not help. I then took him to hospital
where he was examined and given panado syrup and nose drops but was never
admitted. Two weeks later we went back to the clinic where I was told that he
was being allergic to vaccination and he is still going to develop fits and die. I
was given a referral to go to the hospital.
He did start having fits. In hospital they admitted him and then tested his fluids
because the doctor was suspecting meningitis. The baby stayed in hospital
between two and three weeks and then he suddenly developed a reddish rash on
his whole body. The nurses wanted to change the drip from his arm to his head
but I refused and ended up taking him back home with me. We stayed home for
two weeks and then the fits started again so I took him to another hospital, where
he was admitted in ICU and died after 5 days.
Home remedies: This study revealed widespread use of home remedies - both over-thecounter medications and traditional remedies - given either to protect the child from
illness or to cure illness. In South Africa, caregivers can purchase these remedies from a
variety of retail outlets, including independently operating pharmacies, 'African
chemists,' 'muti shops,' 'health shops,' and informal street and local vendors (Gqaleni et
63
al 2007). Key informants in both sites estimate that home remedies typically cost
between 5-35 ZAR per treatment.
In Umzimkhulu, informants said families often give infants enemas to cleanse the
child's gut, a practice called 'isiqoni,' or to reduce high temperature. In addition, a
community health worker in Umzimkhulu said, 'In the case of the HIV positive mothers if
they opted not to give breast milk, when they get home, the members of the family would
say they must also practice 'sprouting,' where they put herbs in a syringe and put it in the
baby's anus. " Another informant, a clinic nurse in Umzimkhulu said, 'Mothers will put
Vicks Vapor Rub or toothpaste up the baby's anus because they think it will cure
diarrhea."
Key informants working in public health services also reported that many local
caregivers know how to, and do, give home treatments that are recommended by
allopathic providers (e.g., oral rehydration sachets or home rehydration mixtures of
water, salt and sugar).
Eleven of 12 caregivers in Umzimkhulu and ten of 23 in Umlazi who were home with
their child when the baby got sick reported trying something at home during the child's
last illness. Several (nine in Umzimkhulu and six in Umlazi) reported giving the infant
oral rehydration therapy or an over-the counter medication as a first treatment, in some
cases (Umzimkhulu only) in conjunction with a traditional remedy. Two additional
caregivers in Umzimkhulu reported providing traditional muti alone as a first treatment.
No care: A fifth option available to caregivers with sick infants is to neither provide
home treatment nor seek treatment. One reason cited by key informants in both
communities that caregivers might choose this option is because people think that some
64
signs of illness are normal and expected infant conditions. A hospital matron in
Umzimkhulu said such thinking with respect to diarrhea, weight loss and marasmus are
common. 'They think it is not an illness that needs to be taken care of and there are some
[health education] needs around that.' For example, one Umlazi caregiver said that when
her baby was 'floppy' with diarrhea and 'refusing feeds,' her aunt and mother said, 'such
problems are known to teething babies.' She therefore did not seek care but the next day
when she realized the baby was gravely ill, rushed to the hospital. This baby died while
they waited in the queue. In Umzimkhulu, two caregivers reported providing no care
prior to their infant's death.
Other caregivers who delayed providing care at first but who eventually did take the
sick child for care were asked why they did not seek or provide treatment sooner. Several
responded that they did not realize the seriousness of the baby's illness (three in
Umzimkhulu, four in Umlazi), while others cited transportation problems (three in
Umzimkhulu, four in Umlazi).
Care-seeking pathways: Figures 4.1 and 4.2 illustrate the complexity of care-seeking
undertaken by caregivers in this study - both back and forth within public health services
and between public services and other types of care. In Umzimkhulu, respondents
reported using up to four points of care, most often starting with home care. Eight
respondents reported only using a public hospital, but this was only true for women
whose child died in the hospital shortly after delivery or whose newborn infant died on
the way home following discharge. In Umlazi, respondents reported using up to eight
points of care, most often starting with public health services (seven to clinics and nine to
65
hospitals). For three of these caregivers, the hospital was the only point of care because
the child died shortly after delivery in the hospital.
No respondents in either site reported using a traditional healer as a first point of care,
although healers were sometimes consulted following the use of western services or
attempts to treat the child with home care (five in Umzimkhulu and four in Umlazi).
Only one caregiver in Umzimkhulu reported being referred to the hospital from
another source (in this case, a GP), and in Umlazi, five caregivers were referred to the
hospital (two by GPs, two by clinics, and one by a district level hospital to a regional
hospital). One other Umlazi caregiver reported being referred to a HIV clinic by the
hospital.
Discussion
Most caregivers in this study chose a variety of care settings and providers to assist
them during their infants' final illness. This finding reflects the medical pluralism
reported in other African settings and in studies of care-seeking among South African
adults (Pronyk et al 2001; Rowe et al 2005; Wilkinson, Gcabashe & Lurie 1999;
Wilkinson et al 1998). As Feierman & Janzen (1992, p 2) have noted, 'What patients see,
in Africa as in many other parts of the world, is a diverse, heterogeneous set of options
for treatment.'
This finding may be surprising in South Africa which has a relatively good public
health infrastructure compared to many African countries (United Nations Development
Programme 2006) and where primary health services are available from government
facilities free of charge. However, studies of care-seeking for children in other countries
66
also show evidence of considerable medical pluralism in spite of locally available free or
low-cost public health care (e.g., Sutrisna et al 1993; Bhandari et al 2002).
In this study, public health services were the most widely used type of care in both
sites among all caregivers. However, public health services were less well utilized in
Umzimkhulu than Umlazi, and particularly as a first point of care. This is in contrast to
earlier findings among South African adults that found those living in rural areas utilize
the public services more than their urban counterparts (South African Department of
Health 1998). In Umzimkhulu, it is notable that no caregivers reported accessing a public
clinic at any point along their care-seeking pathway. This perhaps reflects caregivers'
assessments that the quality of care at clinics is poor, or, as has been found elsewhere, the
fact that women select other providers (e.g., private doctors or doctors at hospitals) based
on understandings of the severity of their child's illness (Khun & Manderson 2007).
Further, caregivers who did use a local clinic or hospital often chose to follow up with a
different type of care if the visit did not result in an improvement in the child's condition.
Terra de Souza et al (2000) have reported a similar phenomenon among Brazilian
mothers during their infants' final illness.
The fact that traditional healers were utilized in both sites is not surprising given that
traditional healers are reportedly very popular in South Africa, and given that many
families report difficulties accessing other local health services. In addition, in contrast to
the poor quality of counseling often reported in public facilities, many traditional healers
emphasize counseling, provide explanations and explain treatment options to their
patients (King et al 1994). Further, traditional healers' methods of curing and explanatory
models of illness can differ quite radically from western medical services. As a result,
67
caregiver explanatory models of illness that incorporate externalizing causes (e.g, 'evil
spirits') may lead some families to choose traditional healers as the first point of care
outside the home. Because key informants report the widespread use of traditional healers
in both sites, it is conceivable that the use of traditional healers was in fact underreported
by caregivers in this study, as has been reported elsewhere (Heuveline & Goldman 2000,
Banda et al 2007). Further, it is possible that caregivers did not count informal
consultations they may have had with traditional healers, such as when they casually met
a healer in the road or market and asked for advice. As one key informant (a Hospital
Matron from Umzimkhulu) said,
What I usually notice is that it is easy for a traditional healer to look after a family
because they are [living near] the families. So, if the granny is going to the shop, he
might ask, 'How is so-and-so, my patient?' And it is also easy for the traditional
healer to visit and to know what is happening to the client.
Unfortunately, some studies have reported that services delivered by traditional
providers to children can be ineffective and even harmful (Tawfik, Northrup & PrysorJones 2002; Freeman & Motsei 1992).
General Practitioners also were used by caregivers in this study, although rarely as
the first point of care. Still, this confirms findings of other research conducted in South
Africa that even families with very limited financial resources will seek care from private
health services (Palmer, Mills, Wadee, Gilson & Schneider 2003; Soderland, Schierhout
& van den Heever 1998).
Home care was well utilized in Umzimkhulu especially, perhaps because of stated
difficulties in obtaining transport in such a rural area. This was similar to the findings of a
study in rural Cameroon where respondents were more likely to use home-based
treatments and to use them earlier in their treatment pathways than they were to seek
68
outside treatment (Ryan 1998). Ryan concluded that, by delaying action outside of the
home, individuals both minimized uncertainty in whether or not outside care was
necessary and the costs of care.
Unfortunately, home remedies may cause or exacerbate infants' illnesses. Studies in
other settings have linked the use of inappropriate home treatments and remedies with
increased mortality (Steenkamp et al 2003; Van Ginneken & Muller 2004; Bonkowsky et
al 2002). Another study of household strategies for managing illness in Chad concluded
that the use of self-medication and unregulated drug markets led many otherwise easily
treatable problems to 'spiral out of control' (Leonard 2005, p 229).
No care: As has been reported elsewhere (Ellis et al 2007; Omotade, Adeyemo,
Kayode & Oladepo 2000; Smith et al 1993), in this study signs of childhood illness (e.g.,
teething) sometimes were assessed as normal conditions that did not warrant health care.
Implications for programs and policies: Given that both private GPs and traditional
healers continue to play an important role in caring for sick infants, consideration must be
given to how they can be better integrated with public health services when necessary.
For example, few of the GPs and none of the traditional healers consulted in this study
referred caregivers to the hospital. Studies from other countries note a variety of
problems associated with care for children provided by private providers (both allopathic
and traditional), including sub-standard and even harmful practices (Chakraborty,
D'Souza & Northrup 2000; Tawfik, Northrup & Prysor-Jones 2002; Tawfik et al 2006).
Box 3 presents some possible strategies to ameliorate these problems.
69
Box 3: Strategies to improve private providers' quality of care (Tawfik,
Northrup & Prysor-Jones, 2002)
•
•
•
•
classic training/education initiatives to address knowledge gaps,
regulations to limit the availability of harmful or commonly misused
drugs and regulations to prohibit certain private practitioners,
motivation via financial incentives (such as subsidized vaccines),
certificates and posters showing completion of training programs, or
advertisements to the community about appropriate practices, and
negotiation initiatives that consider private practitioners as equals and
use a combination of approaches to improve practices.
Among these strategies, both motivation and negotiation initiatives to improve
practices among GPs may be successful in South Africa, particularly as the limited
evidence to date from other settings shows them to be effective among practitioners with
higher education levels (Tawfik, Northrup & Prysor-Jones 2002). Further, provision of
free drug samples and other materials by pharmaceutical companies has been shown to
improve practices among private providers in other countries (Tawfik, Northrup &
Prysor-Jones 2002; Soumerai et al 2005). Linking with drug companies to improve
management of childhood illnesses may be an effective strategy in South Africa where
the pharmaceutical industry is well established.
The literature includes several examples of successful coordination with traditional
healers in South Africa, particularly around HIV/AIDS prevention. Green, Zokwe &
Dupree (1995), for example, describe their success in using training workshops to
increase knowledge about HIV transmission and prevention among a diverse group of
traditional healers. Giarelli & Jacobs (2003) also describe a collaborative effort between
nurses and physicians in the public services and traditional healers to improve referrals
between the various provider types. Freeman & Motsei (1992) also have outlined various
70
options for coordinating with traditional healers, namely: 1) incorporating them into the
health care system as first-line providers, 2) coordinating with healers to establish a
system of 'mutual referral,' or 3) total integration of traditional healers into the health
system so that patients receive treatment combining the two approaches. In South Africa,
policies are already in place to support the improved incorporation of traditional healers
into public health programs, however there have been few guidelines for specific actions
and there has been little implementation to date (Gqaleni et al 2007). Given the
historically inclusive nature of traditional healer practices and the sentiments expressed
by key informant traditional healers in this study, it seems likely that traditional healers
would welcome the opportunity for better collaboration with and recognition by the
health system. The challenge may lie more in convincing allopathic providers to
collaborate with and refer patients to traditional healers. However, strategies for
improving child health should be based on the community's care-seeking practices
(Tawfik, Northrup & Prysor-Jones 2002) and therefore efforts should be made to
integrate all types of providers used.
Because of the widespread use of home care, this study also demonstrates the need
for community education to improve caregivers' recognition of signs of illness severity
and when to seek care. In-service trainings for Community Health Workers to recognize
severe illnesses and to counsel caregivers to seek appropriate care could facilitate this
effort.
These findings also demonstrate a need to improve public providers' referral and
discharge protocols, as several infants in this study died shortly after being seen at public
clinics or hospitals. In fact, policies have been enacted in South Africa to train care
71
providers in standardized case-management protocols for the major childhood illnesses
(such as through the Integrated Management of Childhood Illness (IMCI) and for the
Prevention of Maternal to Child Transmission (PMTCT) of HIV). The problem, to date,
has been poor implementation due to various operational challenges (Solarsh & Goga
2004).
Limitations: This exploratory study had some limitations. First, the sample was small,
due to the qualitative, in-depth nature of each interview. In spite of this, a wide range of
care-seeking behaviors was identified, reflecting the medical pluralism found in other
similar under-resourced settings. Second, interviews were conducted by field researchers
who may have been seen as representing the public health system by respondents. As a
result, it is possible that caregivers withheld certain information about the providers and
treatments they used during their child's final illness. However, in an effort to minimize
this and other sources of inaccuracies in the data, assurances were made to respondents
during the informed consent process that there were no right or wrong answers, that their
comments would be anonymous and confidential and that the interview was not in any
way intended to be judgmental.
This is one of the first studies to describe the different care options used by caregivers
whose infants died in impoverished South African areas and provides new information
about the choices available to and utilized by this particular group. Understanding the
reasons families choose different sources of care as well as the ability of each type to
respond effectively to an infant's health needs is critical to reducing the unacceptably
high IMR in these settings, to preventing unnecessary treatment delays and pain and
suffering among infants and their families. Identifying these factors will improve local
72
strategic planning efforts to target priority issues such as health education, practitioner
training programs, or initiatives to promote collaboration and referral systems across
providers.
Acknowledgements
Special thanks go to the health providers, community leaders, and, particularly, the
caregivers who generously shared their thoughts and experiences to inform this study.
Thanks also are given to the Good Start research team who facilitated and contributed to
every aspect of this study. This research was funded by the Eunice Kennedy Shriver
National Institute of Child Health and Development, Rockville, MD (R03HD052638).
The content is solely the responsibility of the authors and does not necessarily represent
the official views of the National Institute of Child Health and Development or the
National Institutes of Health.
73
Table 4.1: Characteristics of study settings
Characteristic
Site
Location
Population density
Umzimkhulu
Former Transkei 'Bantustan'
area, KwaZulu Natal province
Rural (550,000 residents with an
average population density of 69
people per square kilometer)'
Umlazi
Township near Durban, KwaZulu Natal
province
Urban (2 million residents with an average
population density of 1064 per square
kilometer),2 second largest township in South
Africa
60 per 10004
47 percent6
99 per 10003
Infant mortality rate
Antenatal prevalence 28 percent
of HIV
Sources: ' Centre for Social Science Research 1997; 2 Health Systems Trust and KwaZulu Natal
Department of Health 1996; 3 South African Department of Health 2005; 4 Bradshaw & Nannan 2004; 5
South African Department of Health 2002; 6 Tlebere et al 2007
Table 4.2: Types of traditional healers used and treatments prescribed
Type of
traditional
healer
Umlazi
Divine healer
Divine healer
Sangoma
Sangoma
Umzimkhulu
Divine healer
Divine healer
Divine healer
Sangoma
Sangoma
Inyanga
Inyanga
Inyanga
Treatment
'He bathed the baby in cold water.'
'He told us the baby was hit by 'umoya omubV (evil spirits) and gave us
'izinyamazane' (an herb which is burnt and the baby inhales the smoke to chase evil
spirits).'
'He advised that the baby needed to be taken to its father's house so that the ancestors
could embrace the baby.'
'She burned herbs and let my baby inhale it while at the same time informing the
ancestors about my baby.'
Baby died in the waiting area of the church before consultation.
'He gave us some herbs for the baby to drink at home and said that the baby had a sore
on the inside of the umbilical cord.'
'He gave me holy water that helped accelerate my labour.'
'Because it was late at night and the full treatment takes a long time, she only had time
to burn some herbs for the baby to inhale and some to drink.'
'She said the baby was suffering from 'iplayiti' (crying a lot with a sunken fontanelle).
The healer gave us some herbs to be burnt for the baby to inhale and some were for
drinking.'
The caregiver was told by strangers on a bus to see the Inyanga 'because he is very
good - better than a medical doctor. So we went to the herbalist who said the child
'ukheshiwe' (has evil spirits) and she has lost strength and she is tired. He gave her
some tablets to drink at home' although the baby died before they arrived back home
to give the tablets.
Herbs during pregnancy (isihlambezo) 'to assist in making the delivery of the baby
easier.'
'He gave me isihlambezo to assist in delivery.'
74
Death in hospital (N=l)
...t
PUBLIC HEALTH
SERVICES
Death in
hospital (N=3)
..J
PUBLIC HEALTH
SERVICES
Death in hospital
(N=2)
__.
1.
Death on way
home following
postnatal discharge
(N=l)
PUBLIC HEALTH
SERVICES
Death in
hospital
following birth
(N=7)
.-—L_...
PUBLIC HEALTH
SERVICES
...J
GENERAL PRACTITIONER
(N=l)
HOME CARE
(N=l)
Death at
home after
two days
(N=l)
HOME CARE
(N=10)
Death
following
home birth
(N=2)
...J.....
NO CARE
(N=2)
Death at home
next day (N=l)
Death while waiting for public
transport next morning (N=l)
HOME CARE
(N=l)
HOME CARE
(N=l)
Death in waiting
area (N=l)
J-1-
TRADITIONAL
HEALER
Death at home later
same day (N=l)
GENERAL PRACTITIONER
(N=2)
GENERAL PRACTITIONER
(N=2)
75
Key: Public health services - government clinic or hospital; General practitioner = private medical doctor; traditional healer = Sangoma, Inyanga or
Divine Healer; Home care = over-the-counter medications available from a local chemist/pharmacy (e.g., electrolyte solutions, cough mixtures,
panado syrup, gripe water) or home remedies (traditional, herbal); No care = nothing was done in response to illness symptoms.
FOURTH
POINT OF
CARE
THIRD
POINT OF
CARE
I _
SECOND
POINT OF
CARE
FIRST POINT
OF CARE
Figure 4.1: Sequence of care provided prior to infant death in Umzimkhulu (N=22)
Figure 4.2: Sequence of care provided prior to infant death in Umlazi (N=28)
GENERAL
PRACTITIONER (N=4)
PUBLIC HEALTH
(N=16)
FIRST
POINT
OF
CARE
HOME CARE
(N=8)
r--
Death in
hospital
after birth
(N=3)
Death in
hospital
queue
(N=l)
i ' Hos| i pital
' [ death
i ' (N=3)
Death at home next
day while waiting
for ambulance (N=l)
1
J»
SECOND
POINT
OF
CARE._
PUBLIC
HEALTH (N
GENERAL
PRACTITIONER (N=l)
HOME
CARE
TRADITIONAL
HEALER (N=2)
L_
Home death
next day (N=l)
THIRD
POINT
OF
CARE
PUBLIC
HEALTH (N=9)
___!
Death in
hospital
Death in
hospital (N=7)
HOME CARE
(N=l)
GENERAL
PRACTITIONER (N=l)
(N=2)
FOURTH
POINT
OF
CARE
FIFTH
POINT
OF
CARE
PUBLIC
HEALTH (N=2)
GENERAL
PRACTITIONER (N=4)
PUBLIC
HEALTH (N=5)
SIXTH
POINT
OF
CARE
PUBLIC
HEALTH
SEVENTH
POINT OF
CARE
PUBLIC
HEALTH
EIGHTH
POINT
OF
CARE
PUBLIC
HEALTH
TRADITIONAL HEALER
(N=l)
TRADITIONAL
HEALER (N=l)
HOME
CARE
(N=2)
h.
I
TRADITIONAL
HEALER (N=l)
Death in
hospital (N=2)
76
Key: Public health services = government clinic
or hospital; General practitioner = private
medical doctor; traditional healer = Sangoma,
Inyanga or Divine Healer; Home care = over-thecounter medications available from a local
chemist/pharmacy (e.g., electrolyte solutions,
cough mixtures, panado syrup, gripe water) or
home remedies (traditional, herbal).
CHAPTER FIVE
MANUSCRIPT 2:
Influences on care-seeking during infants' final illnesses
in under-resourced South African settings
77
Abstract
Objective: To understand the factors influencing how caregivers in under-resourced
South African settings select among the health care alternatives available to them during
their infant's final illness.
Methods: In-depth interviews were conducted with 39 caregivers (mothers and
grandmothers) of deceased infants in a rural community and an urban township. Nineteen
in-depth interviews also were conducted with key informants (local health providers and
community leaders) to ascertain opinions about local health care and other factors
impacting care-seeking choices.
Results: The various factors influencing care-seeking were organized into three domains.
Structural factors represent aspects of a caregiver's community, household or personal
situation that influence their living conditions, resources and opportunities. Health system
factors relate to health care access and quality. Caregivers' explanatory models of
infants' illnesses represent their assessments of the severity and etiology of the illness.
Conclusions: The results of this study show that often there was not one factor but a
combination of factors occurring either concurrently or sequentially that determined
when, whether and from where outside care was sought during infants' final illnesses.
Initiatives developed to improve timely and appropriate care-seeking must take into
consideration how to improve utilization of health services, as well as determining how,
and whether, the health system can better compensate for structural problems such as
women's lack of decision-making autonomy, and local explanatory models of childhood
illnesses that may not encourage care-seeking at allopathic services.
78
keywords health care seeking behavior, acceptability of health care, infant mortality,
traditional medicine, qualitative research, South Africa
79
Introduction
Reducing the under-five mortality rate by two-thirds by 2015 is one of only eight
Millennium Development Goals designated as key to promoting human development and
sustaining social and economic progress (World Bank 2004). Achievement of this goal
requires improvements in the quality of care provided to young children and the careseeking behaviors of their families, which have been shown to have a tremendous
influence on infant health (Terra de Souza et al 2000; Arifeen & Bangladesh 2001;
Thaver, Ebrahim & Richardson 1990; Thaddeus & Maine 1994; Uchudi 2001). The
factors that influence care-seeking, however, often are not well understood. Such
information is critical for ensuring that policies and programs effectively address the
constraints families face and build upon enabling factors that promote appropriate careseeking.
Studies in other African settings have identified various influences on care-seeking
for young children. Some studies demonstrate the link between poverty and inadequate
care-seeking (Taffa & Chepngeno 2005; Chopra, Neves, Tsai & Sanders 2007). Health
system characteristics also influence care-seeking for young children. Those identified
within African settings include the distance families live from facilities (Snow et al 1994)
and mothers' previous experiences with medicine stock-outs (Mtango, Neuvians,
Broome, Hightower & Pio 1992). In Uganda, mothers of young children cited the poor
attitudes of public sector health workers as an important deterrent to treatment seeking
(Mbonye 2003). In Tanzania, providers' poor communication with mothers significantly
influenced their care-seeking (Montgomery, Mwengee, Kong'ong'o & Pool 2006).
80
Cultural factors can also affect care-seeking for children. For example, unequal
gender relations within the household have been cited in several African countries
(Fantahun et al 2007; Stephenson, Baschieri, Clements, Hennink & Madise 2006; Kamat
2006; Montgomery, Mwengee, Kong'ong'o & Pool 2006; Tolhurst et al 2008; Molyneux,
Murira, Masha & Snow 2002), as has, in Rwanda, women's control of household
expenditures (Csete 1993). Another study from Nigeria reported that, although mothers
were usually children's primary caregivers, the eldest person in the household or
children's fathers were responsible for making most treatment decisions (Okoko &
Yamuah 2006). Hierarchical relationships within the broader community have been
implicated as well. For example, Ulin & Ulin's 1981 study in Botswana found that
although 53 percent of mothers interviewed considered childhood immunizations to be
'potentially dangerous,' most still immunized their children because their local headman
told them to cooperate with health officials.
Mothers' explanatory models of illness also impact whether or not and from where
they seek treatment (Feyisetan, Asa & Ebigbola 1997; Akogun & John 2005; Hounsa et
al 1993; Olango & Aboud 1990; Molyneux, Murira, Masha & Snow 2002). In South
Africa, Kauchali, Rollins, Bland & van den Broeck (2004) found that when mothers
understand the cause of children's respiratory illness to be 'supernatural,' they are
reluctant to seek medical care and use antibiotics. In Tanzania, childhood fever with
convulsions is more likely to be managed by traditional healers because mothers attribute
the illness to externalizing causes such as evil spirits or a change in weather/wind (de
Savigny et al 2004). A 2003 study of Ghanaian mothers also found that certain illnesses
81
are characterized as 'not-for-hospital' and untreatable with biomedicine (Hill, Kendall,
Arthur, Kirkwood & Adjei).
Maternal assessments of illness severity also influence care-seeking in Kenya (Taffa
& Chepngeno 2005), Ghana (Hill, Kendall, Arthur, Kirkwood & Adjei 2003; Ventevogel
1996), Tanzania (Kamat 2006; de Savigny et al 2004), Ethiopia (Tessema, Asefa &
Ayele 2002), and Uganda (Hildenwall et al 2007). In Kenya, additional illness/child
specific characteristics identified as determining whether mothers sought care include the
child's age (Taffa & Chepngeno 2005) and having symptoms lasting one day or less prior
to death (Snow et al 1994).
Researchers using cognitive-ethnographic methods to understand decisions regarding
illnesses and treatment emphasize that these processes are locally and culturally specific
(Young 1980; Kleinman 1988). In this study, caregivers' decisions regarding careseeking for infants are examined in two under-resourced localities in South Africa. The
study aim is to understand the reasons that caregivers in these settings selected among the
health care alternatives available to them during their infant's fatal illness.
Methods
Design: This study used in-depth interviews with caregivers who experienced an infant
death and key informants knowledgeable about health issues relating to women and
children in each setting.
Settings: The study was conducted in two sites: Umzimkhulu, a sparsely-populated rural
community located in the former Transkei 'homeland' with an infant mortality rate
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(IMR) of 99 per 1000 live births (Jackson et al 2006), and Umlazi, an urban township
located near Durban with an estimated IMR of 60 per 1000 (Bradshaw & Nannan 2004).
Sample: Caregivers who experienced an infant death in the preceding year were
identified within the sample of an ongoing randomized controlled trial in the study sites.
Between September 2005 and December 2007, peer supporters in the community and
antenatal recruiters based in public facilities identified all women who were at least seven
months pregnant or who had given birth within the previous week.
Routine home visits occurred throughout the child's infancy. When an infant death
was identified, the infant's primary caregiver was invited to participate in an interview
regarding the child's health care and last illness. Twenty-two caregivers were interviewed
in Umzimkhulu and 28 in Umlazi. Several other eligible participants were excluded
because their homes could not be located (eight, Umzimkhulu and seven, Umlazi), they
had died and there was no one else suitable to interview (three, Umlazi) or they refused
participation (one, Umlazi). Women who reported that their infant died shortly after birth
in the hospital but before discharge (seven, Umzimkhulu and four, Umlazi) were
excluded from this analysis. The final sample of caregivers included 15 in Umzimkhulu
and 24 in Umlazi (Table 5.1). Almost all caregivers were infants' mothers; two were
grandmothers.
Criterion-based sampling was used to identify community leaders and health
providers based in Umzimkhulu or Umlazi. Eleven key informants interviewed in
Umzimkhulu included two community health workers, two traditional healers, one
village chief, two village headmen, two community members, and two public sector
nurses (one hospital-based and one clinic-based). Eight informants interviewed in Umlazi
83
included three traditional healers, two local government officials, and three public sector
nurses (two hospital-based and one clinic-based).
Data collection: Between December 2006 and November 2007, caregivers were
interviewed using a pre-tested 'social autopsy' instrument. After providing background
information, caregivers were asked to describe their pregnancy and antenatal care
(mothers only), labor and delivery care (mothers only), and the infant's illness that led to
death (all caregivers). Each narrative account was followed up with a series of semistructured questions to ascertain the reasons the caregiver did or did not seek care from
specific providers or facilities during the child's last illness. Interviews were conducted in
their preferred local language (Xhosa or Zulu) and then translated by bilingual field
researchers.
In-depth interviews with informants were conducted in March 2007. These sought to
document informants' assessments of the factors influencing families' care-seeking
practices. Although most informant interviews were conducted in English, in some cases
an interpreter was present to assist with translation.
Data analysis: Framework Analysis (Ritchie & Lewis 2003) was used to guide data
analysis. Following an analysis of care-seeking patterns reported by caregivers, transcript
data from both caregivers and informants were examined and indexed to develop a matrix
outlining the various constraints and enabling factors cited as influencing care-seeking
decisions. In addition to exploring a priori concepts, emergent themes and patterns were
explored in subsequent interviews.
84
Data were entered, cleaned and analyzed using NVivo 7.0. A local Study Advisory
Group provided a critical assessment of the themes and key issues emerging during
analysis as well as the conclusions drawn.
Ethical approval: Ethical approval was obtained from the Johns Hopkins Bloomberg
School of Public Health Institutional Review Board and the Research, Ethics and Study
Leave Committee at the University of the Western Cape, South Africa.
Results
Caregivers reported using at least one of five types of care during infants' last
illnesses (Box 1) and many caregivers reported using more than one of these during their
infant's final illness (Table 5.2). More detailed discussion of these care-seeking
'pathways' is provided elsewhere (Sharkey 2008).
Box 1. Types of care utilized during infants' final illnesses
1. public health services (government clinics and hospitals)
2. general practitioners or 'GPs' (private sector, independently operating
medical doctors)
3. traditional healers (Inyangas -herbalists who rely primarily on knowledge of
muti (traditional medicines made of herbal or animal products) to heal
patients; Sangomas -diviners who obtain guidance from their ancestors
(through possession/channeling, throwing bones, and interpreting dreams) to
detect illness or provide advice to clients and who may also use muti; and
Divine Healers -practitioners who use spiritual intervention to prevent or
cure disease)
4. home care (over-the-counter medications and/or traditional home remedies)
5. no care
Factors influencing care-seeking during infants' last illnesses: The factors influencing
care-seeking among caregivers were grouped into structural factors, health system
factors, and caregivers' explanatory models of child illness (Table 5.3). Structural factors
85
represent those aspects of a caregiver's household, community or personal situation that
influence their living conditions, resources, and opportunities (du Toit 2005; Castro,
Campero, Hernandez & Langer 2000). Health system factors refer to caregivers'
assessments of accessibility and quality. As delineated by the WHO (2001), access to
care incorporates several dimensions including geographic access, financial access, and
availability of services. Quality of care, consistent with Donabedian's (1989) framework,
consists of the attributes of settings where care is delivered, whether or not good medical
practices are followed, and the impact of care on health status. Explanatory models of
child illness, as adapted from Garro (1988) and Kleinman (1980), represent caregivers'
specific interpretations of their infants' symptoms based on both their personal
experiences with illnesses and information they obtain through interactions with others.
These explanatory models can include pathogenic agents or events occurring outside the
body such as 'witchcraft' or 'evil spirits,' what Young (1979) termed 'externalizing
causes.'
Structural factors
The most important structural factors associated with care-seeking were women's
limited autonomy in decision-making and their own personal health during the time of
the infant's illness.
Limited autonomy in decision-making: In both sites, the majority of caregivers (12 in
Umzimkhulu, 15 in Umlazi) reported that they relied on advice from others or felt that
they needed to consult others regarding what to do during their child's final illness. For
example, one caregiver (Umzimkhulu) who took her aunt's advice to care for her infant
at home said she eventually became aware of danger signs that indicated the baby should
86
go to the clinic or hospital. However, she said, at that time, 7 was alone at home and
could not make the decision on my own to take the baby to hospital.' Her baby died at
home the same day. The experience of another Umzimkhulu caregiver suggests that
health professionals also may perpetuate caregivers' poor autonomy in decision-making.
This mother reported that during her pregnancy, clinic nurses told her that her baby's
heartbeat was abnormal and that she should see a doctor in the hospital. However, instead
of referring her straight to the hospital, 'these nurses told me that they were not allowed
to call for an ambulance before my family members had been informed. So I did not go to
hospital straight away as I needed to report at home first. At home my husband and
elders refused me to go to hospital because they said they did not believe the nurses'
story. They told me that they would first use traditional muti on me.'
Some caregivers reported feeling conflicted about what others advised. For example,
when one mother (Umlazi) noticed her baby was 'floppy' and 'refusing feeds,' she said
she wanted to take her baby to the hospital but her own mother and another older female
relative said that there was 'no need because the baby is teething.' This baby was taken to
a hospital later that same day but died while they were waiting in the queue. Another
mother (Umzimkhulu) said that when she was traveling with her gravely ill child towards
a local GP's office, she took the advice of strangers on the bus to see a local traditional
healer instead. Her baby died at home shortly after returning from the consultation. She
said that if she were ever put in a similar situation, 7 will take my baby to a medical
doctor or hospital immediately and I [will] never listen to other people. I will do what I
think is right.'
87
Among informants, there was disagreement about the extent to which family
members influence how a mother cares for and seeks treatment for her child (Box 2).
Box 2. Informant views on family members' influence on mothers'
treatment decisions
'If the mother-in-law believes that the child should be taken to the witch doctor
or the traditional healer, so the daughter-in-law then has no say on that. She has
to do what the mother-in-law says. Most of the time, the pressure is from the inlaws. Especially for those who are married. And then they are doing what they
can to respect the in-laws. Because it is their duty to respect.' (Community
Health Worker, Umzimkhulu)
'It is very rare that the [child's] mother would not make the decision regarding
the health care because young women do not usually stay with their in-laws.
Even those who do stay with the in-laws, they've got no problem.' (Headwoman,
Umzimkhulu)
Caregivers' personal health: Two caregivers (one, Umzimkhulu, one, Umlazi)
mentioned that their own health problems prevented them from taking their sick infants
for timely treatment. The Umzimkhulu caregiver, hospitalized herself when her child
became sick, said, 'I just wish I was at home when my baby got ill because I could have
recognized the problem early and sought medical advice.' Informants also mentioned
caregivers' personal health as a determinant of whether they are able to provide or seek
care for their infants (Box 3).
Box 3. Informant assessment of how caregiver health affects care-seeking
'You find that people who are staying in these places, they are also sick
themselves. Nothing to eat. Before they can think of the baby who is sick, they will
first think, "What am I going to eat tonight? Or drink...anything?" And you
know, before they can [bring] a sick baby, they've got so many things to think
about.' (Hospital matron, Umlazi)
88
Health system factors
Health system factors influencing care-seeking related to geographic access, financial
access, availability of services, and quality of care.
Geographic access: The location of services was an important influence on
respondents (13 in Umzimkhulu, 18 in Umlazi). Several caregivers attributed their delays
in seeking outside care to their distance from the nearest facility, with some reporting that
it typically takes more than two hours to reach the hospital. In Umzimkhulu, all
caregivers who eventually took their child to the hospital said they delayed going there
and first provided home care because of distance. This, along with difficulities finding
transport, were cited as the primary reasons another caregiver (Umzimkhulu) reported
only providing home care to her child prior to its death. Ambulance services often were
considered inadequate. In fact, most caregivers who sought hospital care reported using a
public bus, taxi, or a private (hired) car rather than an ambulance. In Umzimkhulu, two
caregivers called for an ambulance when their child was sick; neither arrived. One of
these women said she eventually hired a private car to go to the hospital, the other stayed
at home with her child where it died the next morning. In Umlazi, one caregiver called
for an ambulance for her child which arrived promptly. Several caregivers who chose
other forms of transport said they did so after having waited several hours for an
ambulance to arrive on previous occasions. There were other caregivers who, in spite of
never experiencing problems with ambulance services, said they sought other forms of
transport because they anticipated that an ambulance would take too long to arrive.
Private transport services also created problems. Two women (Umzimkhulu) reported
that it took more than six hours for a private hired car to arrive at their homes. For a third
89
caregiver (Umzimkhulu), the private car she hired arrived after the baby had already died
at home. She said if the car had arrived promptly, 'maybe my baby would be alive.'
Financial access: An inability to pay for transport was other constraint mentioned by
caregivers (five, Umzimkhulu, six, Umlazi). One Umlazi caregiver reported that it was at
night when she realized her child was sick, she 'knew' that getting an ambulance at that
time was 'problematic,' and she couldn't afford to hire a private car. She reported waiting
until the morning when a more affordable form of transport was available and then went
to the closest facility, her local clinic. She said, 'if I had taken the baby directly to
hospital' it would still be alive. Another mother (Umlazi) reported that her baby began
breathing fast on the way home after being discharged from the hospital. She wanted to
immediately return to the hospital but did not have enough money for transport back.
This baby died as soon as the mother arrived home.
Informants also suggested that many families face economic hardships impacting
their ability to seek care (Box 4).
Box 4. Example provided by key informant regarding financial access
'People do not have money in the community so it becomes hard for the women
to take their kids to the clinic or the hospital. The child might even pass away
while the mother is still looking for money asking the other neighbors if they
could borrow her some money. And then at times she can't even walk to the
clinic because it is a long distance.' (Chief, Umzimkhulu)
Availability of services: Lack of service availability also influenced caregivers (six,
Umzimkhulu, six, Umlazi). In Umlazi, for example, being turned away by the clinic
because it had 'filled' its daily quota impacted care-seeking. Box 5 shows one mother's
account.
90
Box 5. Umlazi mother's experience with clinic 'daily quotas'
'My baby was teething and vomiting with diarrhea. She started to lose strength.
On [the next day], I took her to clinic. The security guard did not want to let me
in because it was already 10 in the morning and [the clinic] had enough people
for the day. Since I work as a security guard too, I convinced him to let me
through the gate. But when I went in the clerk [at the front desk] wouldn 't let me
see the nurses. The clerk took my baby's temperature under her arm and
determined that she didn 't have a temperature. Then he sent me home with ORS
[oral rehydration solution] and panado [an analgesic].'
This mother said she did not think she could take the baby to the hospital without a
referral letter from the clinic so she instead bought over-the-counter medicines from a
local chemist and took her baby to a GP the next day. The baby's condition did not
improve and she died at home four days later.
Two caregivers (Umlazi) described their difficulties in accessing services because a
national strike of government employees was underway during their child's final illness.
One said her baby had been discharged from the hospital a week earlier but then
developed retractions, apnea and seizures. Because the public hospital was affected by
the strike she instead went to a local GP. The GP said the baby needed hospital care so
referred the mother to a semi-private hospital outside of the area. As ambulances also
were on strike, the mother took two different taxis in an effort to reach the hospital but
her baby died on the way.
Assessments of public facilities' limited hours of operation, insufficient staff, long
wait times and insufficient medicines also influenced caregivers. One Umzimkhulu
mother, who in spite of financial and transport difficulties took her sick child to a GP two
hours away, stated,
'I don't like using the clinic because most of the time there is no doctor visiting the
clinic or sometimes there might not be a sister [professional nurse] to examine the
91
child, so I prefer to use my doctor because I have used him for many years and I trust
him and I don't mind paying R50 to get there.'
Another Umzimkhulu caregiver also reported taking her ill child to a GP rather than
her local clinic because 'there are always long queues at the clinic' and because
'sometimes mothers take their babies to clinics and... most medicines are out of stock.'
Informants addressed some of the access problems mentioned by caregivers as well
(Box 6).
Box 6. Key informant views on problems relating to access to care
''Sometimes people are complaining they take a long time to be attended [to at the
public health services]. Sometimes a person comes, they take about three, four,
five hours waiting. Which is unfair. If people come for sickness, they are
suffering, they are in severe pain. They must quickly get attended. The people will
go to hospital and say [to meJ, "They don't take care of us. We just lie like that
and they are moving up and down without seeing us while we are in severe
pains."' (Inyanga, Umlazi)
'We've got a problem. There is a shortage of nurses and the babies can die in the
queue. They wait too long. It takes two days to see the doctor. The come on the
first day and then have to wait all day and then stay overnight and then only get
to see the doctor the next day.' (Community Health Worker, Umzimkhulu)
Quality: Caregivers' assessments of quality were based on previous experiences with
services and providers, and/or on the assessments of others (ten, Umzimkhulu, 13,
Umlazi).
Provider demeanor was particularly important. One Umzimkhulu mother who
reported having had nurses shout at her when she delivered her baby in the local hospital,
chose to take the child first to a traditional healer when he became ill. Her baby died just
after they arrived back home from the traditional healer but she still rated his care as
'good' because 'he showed that he cares about people and my baby was helped
immediately.'
92
Informants also suggested that negative provider demeanor and poor rapport with
patients influence care-seeking (Box 7).
Box 7. Key informant assessments of how quality of care
can influence careseeking
'It's the treatment from nurses that could stop [a mother with a sick child] from
going to the health services. They get scolded. If the woman does have money,
she would rather prefer going to private doctors. If she doesn 't have money,
some may rather stay at home.' (Headman, Umzimkhulu)
'To be honest, we are to be blamed also as health workers because we do have
some barriers that we create. Because, if the client was not looked after well, or
there is something you said that she didn 't like, she cannot come to you. And if
she is coming from the traditional healer and you say, "You decided to come so
late with a sick baby! Where have you been?" If you start with those things, it
puts her off. She won't be interested in coming back to the institution. There are
attitude problems.' (Hospital nurse, Umzimkhulu)
Caregivers' explanatory models of child illness
Caregivers' explanatory models of their child's illness also influenced care-seeking.
The most frequently mentioned were caregivers' assessments of the severity of their
child's illness and infant danger signs and their attribution of the illness to an
externalizing cause (e.g., 'evil spirit').
Assessment of the severity of child's illness/infant danger signs: Several caregivers
reported that they did not realize the gravity of their baby's symptoms and therefore
delayed seeking treatment (six, Umzimkhulu and thirteen, Umlazi). One Umlazi mother
said she stayed home with her child for a week before taking her for treatment because, 7
did not think it was serious. I thought that it was due to cold weather and it will subside.'
Other caregivers reported thinking that problems such as 'floppiness,' 'refusing feeds,'
and diarrhea were normal problems associated with teething and that treatment was
unnecessary.
93
One informant (Headwoman, Umzimkhulu) suggested that the perceived severity of
the illness determines whether or not a caregiver will take her sick child to a traditional
healer or western medical services: 'When the baby is very ill, we prefer the western
healers like the clinic - not the traditionals. People use the traditional healers but not
[for] a very sick person.' However, no caregivers reported this practice. Instead, several
suggested that it is appropriate to use western providers or traditional healers
interchangeably depending on which treatments seem to be working.
Attribution of illness to an externalizing cause: Both caregivers and informants
reported that if the cause of illness is understood to be witchcraft or angry ancestors, the
family would only consult a traditional healer (Box 8).
Box 8. Influence of assessments of illness etiology
on care-seeking preferences
'Some of them, they've got a belief that you don 'tjust get sick because there is a
bacteria or virus that you've contacted. You've been bewitched. That's what
make[s] them get treatment from traditional healers. Because they say
traditional healer is going to give them medicine that is going to prevent this
evil spirit that comes from their neighbors to bewitch them. Meanwhile, they've
been attacked by a virus or bacteria! It doesn 't need a traditional healer, those
things. So, the child will be the last one to be taken to the hospital.' (Hospital
Matron, Umlazi)
Six caregivers (three, Umzimkhulu, three, Umlazi) reported that their child's illness
was due to an externalizing cause that required traditional treatment. One Umzimkhulu
caregiver said she was told that a 'red mark at the back of the [baby's] head was a
danger sign showing that the baby was not well.' She took her baby to a traditional healer
'who was good in healing the mark on babies.' However, because it was late at night
when they visited the traditional healer, they were told to come back the next day.
Instead, she then took her baby to the hospital, where it died 12 hours after being
94
admitted. She said she wished the baby could have received care from the traditional
healer, stating, 'If I could have another baby, I would make sure that if I notice that red
mark on the baby's head I quickly run for help.' Another caregiver (Umlazi) whose baby
died after receiving treatment for dehydration at her local clinic and hospital said, 'People
say my child suffered from traditional illnesses. I think I would take my child for
traditional help the next time.'
Discussion
This study aims to elucidate the various factors influencing care-seeking among
South African caregivers of infants who died.
The experiences of women in this study highlight the complexity of intra-household
relationships and treatment decision-making dynamics. Although all respondents selfidentified as the infant's primary caregiver, in both sites most caregivers said they relied
on advice from others or needed to consult others regarding what to do during their
child's final illness. Limited autonomy among these women may be perpetuated beyond
the household as was demonstrated by the Umzimkhulu woman who was told by clinic
nurses to inform her husband and elders before presenting at the local hospital. This is
similar to the findings of a 2006 Tanzanian study which concluded that health providers
sometimes undermine women's already low self-efficacy and further limit their potential
to initiate appropriate care-seeking for their children (Montgomery, Mwengee,
Kong'ong'o & Pool 2006). Previous studies have identified how the health of South
African women is affected by gender inequality and low social status (Dunkle et al 2004;
95
Gilbert & Walker 2002); this study suggests that interpersonal power dynamics may
affect the health of their children as well.
The fact that caregivers' own ill health was cited by only two respondents as having
influenced their care-seeking is somewhat surprising given the high local prevalence of
HIV/ADDS. However, studies from Uganda and Tanzania suggest that fertility is lower
among HIV positive women with clinical symptoms than among asymptomatic HIVpositive women (Gray et al 1998; Hunter et al 2003) so it is possible that many HIV
positive respondents were asymptomatic. Other studies suggest that women living in
extreme poverty have a high tolerance to physical pain and ailments and tend to
underestimate their own health problems (Castro, Campero, Hernandez & Langer 2000;
Castro 1995). It is therefore possible that even respondents who were themselves quite ill
during their child's illness did not recognize themselves to be.
In addition, this study demonstrates that even though public health services are free in
South Africa, families living in abject poverty still face considerable financial constraints
that impact their access to care. Indeed, in other African settings where direct treatment
costs are minimal, indirect costs such as for transport or child care for other children can
still have an important influence on care-seeking (Standing & Bloom 2002;.Chuma,
Gilson & Molyneux 2007; Gage 2007; Mbonye 2003; Moore et al 2002).
As was found in this study, previous South African studies also have found long wait
times to be important in causing maternal dissatisfaction with quality of care (Bachmann
& Barron 1997; London & Bachmann 1997). Another study (South African Department
of Health 1998) concluded that long wait times, lack of access to doctors, and short
consultation times were considered major problems within the public services.
96
In this study, assessments of the negative provider demeanor at public health services
led some caregivers to instead seek care from other types of providers. Recent studies
suggest that many staff working in public clinics and hospitals feel overworked and
stressed by their high workloads (Wilkinson, Sach & Abdool Karim 1997; Schneider &
Gilson 1999), a problem compounded by poor working conditions such as low salaries
and staff shortages (Walker & Gilson 2004). These frustrations were corroborated by
informants in this study who also said that the resulting poor relationships between nurses
and patients is an important influence on whether or not caregivers present with their sick
infants. Further, there is a long history of South African allopathic providers not
approving of other types of healing (Comaroff & Comaroff 1991; Ngubane 1981).
Consequently, a caregiver might be unwilling to seek care from a provider who does not
agree with her explanatory model of the illness, or she might be unwilling to provide a
full history of the illness and treatments given when she does present (Ngubane 1992).
Kale (1995) states that this lack of history and disclosure due to a fear of being scolded
by nurses can have important implications for health outcomes, particularly with respect
to dangerous interactions of allopathic and traditional medicines.
The care-seeking behaviors among caregivers in this sample varied considerably and
incorporated both traditional and allopathic treatments and remedies. Indeed, most appear
to have taken what has been referred to elsewhere as a 'pragmatic pluralistic approach to
health care' (Granich et al 1999, p. 493), using multiple sources of care in their efforts to
save their infants. Similarly, Young's (1980) study of a Mexican community concluded
that few people would go back to the same type of provider (whether allopathic or
traditional) if a provider's treatment did not work the first time. In Bolivia, caregivers
97
often reported using more than one resource (e.g., traditional healer, private care, and
public services) when they felt the child was not improving or they reported feeling
uncomfortable with the care the child received (Aguilar et al 1998).
Implications for programs and policies: This study demonstrates that often there was not
one constraining factor but a combination of factors occurring either concurrently or
sequentially that determined whether, when, and from where outside care was sought
during infants' final illnesses. These findings suggest that policy and programmatic
initiatives to improve timely and appropriate care must be multifaceted as well, taking
into consideration how to improve utilization of health services (e.g., by addressing
identified inadequacies in access and quality and by improving knowledge of infant
danger signs that require care), as well as determining how, and whether, the health
system can better compensate for problems such as caregivers' lack of decision-making
autonomy, financial difficulties, and local explanatory models of childhood illnesses that
may not promote care-seeking at allopathic providers. One example would be to integrate
a targeted public health intervention with a poverty alleviation program that addresses
women's empowerment and includes training to increase knowledge on infant risks and
illness prevention. A similarly structured program linking a women's microfinance-based
intervention with the reduction of intimate partner violence has had success in a rural area
of South Africa (Kim et al 2007).
The study findings demonstrate a need to improve education on infant danger signs
for pregnant women and new mothers at each contact they have with antenatal and
pediatric health services. A multifaceted intervention involving other family members
may be even more effective. In addition, previous studies have found that disseminating
98
behavior change and communication messages through the broader community can be
effective in settings where women's autonomy in decision-making within the household
is limited (Winch et al 2002; Montgomery, Mwengee, Kong'ong'o & Pool 2006). Any
education messages should be sensitive to and incorporate local explanatory models of
illness causation and cultural practices. Initiatives that do not address such local cultural
issues may face substantial challenges or, in fact, be ineffective (Kauchali, Rollins, Bland
& van den Broeck 2004). It is recognized that sensitization of public health staff to local
cultural practices may be difficult in South Africa given allopathic providers' typically
negative view towards traditional healing and healers (van der Kooi & Theobald 2006).
However, health services should strive to be evidence-based, patient-centered, and
systems-oriented (Institute of Medicine 2001) which suggests the need to collaborate
with all types of providers operating and utilized in these settings.
Within health services specifically, there are a range of potential responses to address
some of the problems influencing care-seeking (Table 5.4). A recent sector-wide pay
raise awarded to public nurses (Reuters 2007) seeks to address one of the problems
identified by nurses in this study regarding their conditions of service. Whether or not
this also will improve care is yet to be determined.
There is considerable interconnectedness between the various Millennium
Development Goals, including eradicating poverty, reducing child mortality and
promoting gender equality, and the United Nations Secretary General has stated that
meeting the challenge of these goals will require a break from 'business as usual' (United
Nations, 2007). This study indicates some of the very specific ways that poverty, limited
autonomy in decisionmaking, poor access to and quality of health care, and local
99
understandings of illnesses combine to result in high rates of infant death. Initiatives that
address the complex interactions among caregivers, the health system and the broader
social, economic and cultural context in which families live are likely to be more
effective, balanced and sustainable in reducing infant deaths.
Limitations: Stated influences on care-seeking behavior were based on caregivers'
recollection and as such, may be subject to error. However, Snow et al (1993) have found
that recall for significant events such as a death in the family typically is good. Further,
interviewers were trained to confirm respondent statements with follow-up questions in
order to identify discrepancies or omitted information and correct inconsistencies.
In addition, interviewers' professional backgrounds may have evoked desirable
answers (e.g., an under-reporting of use of traditional medicines and healers) although
efforts were made to minimize this problem by providing assurances to respondents
during the informed consent process that there were no right or wrong answers, that their
comments would be anonymous and confidential and that the interview was not in any
way intended to be judgmental.
Finally, it is not possible to predict care-seeking behaviors based on these findings.
Future research among caregivers in these settings that elicits information on hypothetical
illness situations may be able to elucidate the probable sequencing of care-seeking more
specifically.
Acknowledgements
Special thanks go to the health providers, community leaders, and, particularly, the
caregivers who generously shared their thoughts and experiences to inform this study.
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Thanks also are given to the Good Start research team who facilitated and contributed to
every aspect of this study. This research was funded by the Eunice Kennedy Shriver
National Institute of Child Health and Development, Rockville, MD (R03HD052638).
The content is solely the responsibility of the authors and does not necessarily represent
the official views of the National Institute of Child Health and Development or the
National Institutes of Health.
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Table 5.1: Characteristics of caregivers and infants
Characteristics
Umzimkhulu (N=15)*
Caregiver type
Mother
14
Grandmother
1
Caregiver age in years (range)
Mother
17-36
Grandmother
44
Unknown
3
Maternal parity
1
9
2-4
5
>5
1
Caregiver education
None
0
Primary
3
Secondary or more
8
Unknown
4
Maternal HIV status at recruitment (obtained verbally)
Known positive
4
Unknown/negative
11
Sex of infant
Male
5
Female
10
Age of infant at death
Less than one day
3
One to 28 days
2
29 to 365 days
10
Excludes infants who died before being discharged after a hospital birth
Umlazi (N=24)*
23
1
17-36
53
5
14
9
1
0
3
14
7
11
13
12
12
1
0
23
Table 5.2: Types of care provided to infants during final illness
Type of Care
Public health services
Clinic
Hospital
General practitioner
Traditional healer
Sangoma (Diviner)
Inyanga (Herbalist)
Divine Healer (Faith Healer)
Home care
No care
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Umzimkhulu (N=15)
Umlazi (N=24)
0
8
5
5
2
1
2
12
2
10
21
6
4
2
0
2
15
0
Table 5.3: Factors influencing care-seeking during infants' last illnesses
Factor
Structural
Limited autonomy in decision-making
Caregiver poor health
Health system
Geographic access to care
Financial access to care
Availability of services
Quality of care
Caregivers' explanatory models of child illness
Assessment that child's illness was not severe/lack of
awareness of infant danger signs
Assessment of an externalizing cause of illness
Umzimkhulu
(N=15)
Umlazi
(N=24)
12
1
15
1
13
5
6
10
18
6
6
13
6
13
3
3
Table 5.4 Potential health system responses to problems identified by caregivers
Problems identified by
caregivers
Structural
Potential responses
Limited autonomy in
decision-making
•
•
Health education targeting other members of households
Links with community-based development programs
Poor health of caregivers
•
Improved implementation of the Prevention of Maternal to Child
Transmission of HIV (PMTCT) Program
Geographic access
•
Implement/expand mobile services, CHWs, ambulance services
Financial access
•
Vouchers/reimbursement system for transport
Availability of services
•
•
•
Provider attitudes
•
•
•
•
•
Incentives to increase provider supply
Training relating to management of supplies, appropriate triage
Community education regarding patient right to present at
hospital in an emergency
Improve working conditions of providers
Training relating to patient rights, appropriate counseling skills
Training (IMCI, PMTCT, case management, referrals)
Quality assurance
Training for private allopathic and traditional providers
Health system
Poor assessment and
management
Explanatory Models
Lack of awareness of danger
signs
•
•
•
Health education during antenatal and well-child visits, also to
others in households
Linkages with media, schools
Training for traditional healers
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CHAPTER SIX
MANUSCRIPT 3:
What went wrong? Factors associated with infant deaths in
two under-resourced South African settings
104
Abstract
Objective: To present both caregivers' explanatory models and a biomedical assessment
of 'what went wrong' in infant deaths occurring in two under-resourced South African
settings by examining causes of deaths, factors associated with the deaths, and whether
the deaths were avoidable.
Methods: In-depth interviews were conducted with caregivers (mothers and
grandmothers) of deceased infants in a rural community (22 in Umzimkhulu) and an
urban township (28 in Umlazi) using a social autopsy approach. Nineteen interviews with
informants (local health providers and community leaders) also were conducted to
ascertain opinions about local health care and other factors contributing to high rates of
infant death in these communities. In addition, a biomedical assessment was conducted to
provide an additional viewpoint on the health system and caregiver/family factors
associated with each death, and to determine whether or not the death was avoidable.
Results: Although some caregivers were unable to assign a cause of death to their infants,
others reported medical causes (e.g., pneumonia), medical symptoms (e.g., 'vomiting'),
or externalizing causes (e.g., 'evil spirit'). Most causes of death assigned by the
biomedical team for perinatal death related to inadequacies in the care of women in labor
and the resuscitation of newborns. Most assigned by the biomedical team for older infant
deaths were preventable infectious diseases. Factors associated with death included a
range of actions, or inactions, of the caregivers themselves and of inadequacies in the
accessibility and quality of local health services.
Conclusions: This study highlights the gap between caregiver and biomedical models of
infant illnesses and the factors associated with infant deaths. In addition, in most cases
105
the infant's death was found to be not the result of an isolated event but of an interaction
of several modifiable factors. As most of the deaths were identified as preventable,
prompt implementation of already well-recognized strategies could have a significant
impact on child survival in these settings.
keywords infant mortality, health care seeking behavior, quality of care, traditional
medicine, quality of healthcare, access to healthcare, qualitative research, South Africa
106
Introduction
Almost ten million children under the age of five die each year, mostly from causes
that are considered preventable (UNICEF 2007). Many of these deaths occur in the
child's first year, and even in the first 28 days (World Health Organization 2005). In
South Africa, cause of death statistics generally are of poor quality (Patrick & Stephen
2005; Mashego et al 2007), however the top causes of infant death are considered to be
HIV/AIDS, low birth weight, diarrhea, respiratory infections, neonatal infections, and
protein energy malnutrition (Bradshaw, Bourne & Nannan 2003). South Africa's overall
infant mortality rate (IMR) is 54 per 1000 (Statistics South Africa 2005) and is expected
to increase in the coming years due to the expanding HIV epidemic (Bradshaw & Nannan
2004).
Much research has linked infant death with poor health care quality, particularly with
respect to neonatal deaths (Finnstrom et al 1997; Howell 2008; Richardus, Graafmans,
Verloove-Vanhorick & Mackenbach 1998; Flegg 1982). Initiatives that seek to improve
pediatric assessment and management, such as the Integrated Management of Childhood
Illnesses (IMCI), were developed in response to this acknowledged relationship.
However, it also has been argued that medical care has a limited impact on the health of a
population, and that broader social issues play a more prominent role (McKeown 1976).
While this argument has been criticized, particularly in recent years as medical
advancements have expanded the ability of health care to save lives (Colgrove 2002),
considerable research demonstrates a strong link between poverty and ill health
(Feierman & Janzen 1992; Packard 1989; Chopra, Neves, Tsai & Sanders 2007), and
between poverty and infant death in particular (Scheper-Hughes 1992; Horta de
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Figueiredo Goulart, Somarriba & Xavier 2005; DaVanzo & Habicht 1986; Habicht,
DaVanzo & Butz 1988; Golding et al 1994; Rahman et al 1985). Indeed, all of the top
causes of infant death in South Africa are closely associated with the conditions of
poverty that continue to plague many South African households.
Other research has demonstrated a relationship between infant death and factors such
as maternal nutrition, education, employment, marital status, hygiene behaviors,
breastfeeding, and behaviors during pregnancy (Golding et al 1994; Greenwood &
McCaw-Binns 1994; Northrop-Clewes et al 1998; Singh & Yu 1996; Sumits, Bennett &
Gould 1996; Charmarbagwala et al 2004; Cleland & Van Ginneken 1988; Victora et al
1992; Caldwell & McDonald 1982; Habicht, DaVanzo & Butz 1986). Still other studies
highlight how local knowledge and cultural practices can influence infant health,
particularly during the neonatal period (Winch et al 2005; Veale, Furman & Oliver 1992;
Awasthi, Verma & Agarwal 2006; Darmstadt et al 2007).
To date, few studies on infant death focus on the sequence of events leading up to the
child's fatal illness, particularly from the perspective of families experiencing the tragedy
(Kallander et al 2008; Aguilar et al 1998; Terra de Souza et al 2000; Horta de Figueiredo
Goulart Somarriba & Xavier 2005; Hadad, Fran§a & Uchoa 2002; Schumacher et al
2002; Anker et al 1999; Patel et al 2007; Arifeen & Bangladesh 2001; Bhandari et al
2002; de Savigny et al 2004). Consequently, often little is known about the circumstances
in which these deaths occur.
In South Africa, two programs exist to better understand the factors associated with
perinatal and child deaths that occur in health facilities. The Perinatal Problem
Identification Programme (PPIP) and the Child Healthcare Problem Identification
108
Programme (Child PIP) aim to ensure that all inpatient deaths are identified and assigned
a medical cause of death (Stephen & Patrick 2007). Through a clinical audit, efforts are
made to determine the factors associated with the death that are considered modifiable,
and whether or not the death could have been avoided. While these programs constitute
the country's most reliable data sources on infant and child deaths (Solarsh & Goga
2004) and provide important information regarding the quality of care these children and
their families received, they do not examine deaths that occur outside of the hospital and
therefore leave a gap in our understanding of many of the household and communitybased factors that also may be modifiable.
This study is an attempt to fill that gap. For each death, a social autopsy approach was
used to assess caregivers' explanatory models of what happened and what went wrong
during the infant's final illness. In addition, a biomedical assessment based on caregivers'
narrative accounts was conducted using PPIP and Child PIP methods. This biomedical
assessment aimed to provide an additional viewpoint on the health system and
caregiver/family factors associated with each death, and to determine whether or not the
death was avoidable.
Methods
Design: In-depth interviews were conducted in each setting with caregivers who
experienced an infant death and key informants knowledgeable about health issues
relating to local women and children.
Settings: The study was conducted in two sites: Umzimkhulu, a sparsely-populated rural
community located in the former Transkei 'homeland' with an IMR of 99 per 1000 live
109
births (Jackson et al 2006), and Umlazi, an urban township located near the city of
Durban with an estimated M R of 60 per 1000 (Bradshaw & Nannan 2004).
Sample: Caregivers who experienced an infant death in the preceding year were
identified within the sample of an ongoing randomized controlled trial. Between
September 2005 and December 2007, peer supporters in the community and antenatal
recruiters based in clinics and hospitals identified all women who were at least seven
months pregnant or who had given birth within the last week.
Routine home visits occurred throughout the child's infancy. When an infant death
was identified, the infant's primary caregiver was invited to participate in an interview
regarding the child's health care and last illness. Several eligible participants were
excluded because they could not be located (eight, Umzimkhulu, seven, Umlazi), they
had died and there was no one else suitable to interview (three, Umlazi) or they refused
participation (one, Umlazi).
Criterion-based sampling was used to conduct interviews with community leaders and
health providers. The eleven Umzimkhulu informants included two community health
workers, two traditional healers, one village chief, two village headmen ('Indunas''), two
community members, and two public sector nurses (one hospital-based and one clinicbased). Eight Umlazi informants included three traditional healers, two local government
officials, and three public sector nurses (two hospital-based and one clinic-based).
Data collection: Caregiver interviews were conducted between December 2006 and
November 2007. Caregivers were asked to describe their pregnancy and antenatal care
(mothers only), labor and delivery care (mothers only), and the infant's illness that led to
death (all caregivers). Each narrative account was followed up with a series of semi-
110
structured questions to ascertain the caregivers' explanatory models of their child's
illness. Each caregiver also was asked open-ended questions about what she wish had
happened differently, what could have made things better for her and the baby, what she
might do differently in the future, and any recommendations she had for making health
care better for local women and children. These interviews were conducted in caregivers'
preferred local language (Xhosa or Zulu) and then translated into English.
Efforts were made to obtain all available hospital records for each child however, due
to logistical issues and missing records in facilities, records were obtained for only five
infants in Umzimkhulu and three in Umlazi.
Efforts also were made to review death certificates to learn the cause of death
assigned to each child. Caregivers of three infants in Umzimkhulu and 14 infants in
Umlazi obtained death certificates following the death of their child and had them readily
accessible for review during the interview.
Interviews with informants, conducted in March 2007, documented their assessments
of the factors related to high levels of infant mortality in each site. Although most
informant interviews were conducted in English, in some cases (four in Umzimkhulu,
two in Umlazi) an interpreter was present to assist with translation.
Data analysis: Caregivers' explanatory models of the factors associated with their child's
death were analyzed using Framework Analysis (Ritchie & Lewis 2003). In addition, a
biomedical panel was convened comprised of three South African clinicians familiar with
the South African PPIP and Child PIP programs and methods: a registered nurse with a
specialty in neonatal nursing and PhD in epidemiology, a medical doctor with
qualifications in medical sociology and public health, and a medical doctor with a
111
qualification in pediatrics. Each panel member read through a subset of the caregiver
transcripts and identified the caregiver/family and health system-related factors
associated with each death. These factors were coded using the lists of 'avoidable' and
'modifiable' factors developed and utilized within the PPIP and Child PIP programs
(Appendix G). Each case was analyzed by examining caregivers' descriptions of the
signs and symptoms of the illness, actions taken at home and whether or not care was
sought, the timing of these actions, and the treatment received from various providers.
Based on this assessment, the panel member gave his or her opinion on one or more
probable causes of death, determined specific caregiver/family or health system-related
factors that might have contributed to death and whether or not, within the South African
context, the death could have been avoided. Half of the total cases (25) were assessed by
two different clinical reviewers to check for inter-rater reliability. When discrepancies
arose among the interpretation of a case, the case was reviewed again until a consensus
was reached.
Data were entered, cleaned and analyzed using NVivo 7.0. A local Study Advisory
Group provided a critical assessment of the themes and key issues emerging during
analysis as well as the conclusions drawn.
Ethical approval: Ethical approval was obtained from the Johns Hopkins Bloomberg
School of Public Health Institutional Review Board and the Research, Ethics and Study
Leave Committee at the University of the Western Cape, South Africa.
112
Results
Background characteristics of the sample: The final sample included 22 caregivers
of infants in Umzimkhulu and 28 caregivers of infants in Umlazi (Table 6.1). All except
two caregivers (who were infants' grandmothers) were infants' mothers. The infants'
ages at death ranged from less than one day in both sites to 35 weeks in Umzimkhulu and
43 weeks in Umlazi.
Most infants in both sites died in the hospital (Table 6.2). Approximately half of the
hospital deaths in Umzimkhulu (seven of 13) were 'early infant deaths' that occurred
shortly after birth while this was true for only three of the 21 Umlazi hospital deaths.
Other infants (five, Umzimkhulu, six, Umlazi) died at home, either before the
caregiver sought outside care or shortly after returning home from a provider (allopathic
or traditional). The five remaining infants (four, Umzimkhulu, one, Umlazi) died either
on their way to or home from the hospital, or while awaiting consultation from a general
practitioner or from a traditional healer.
Assessments of the cause of death: The cause of death of each infant was assessed by
three often divergent sources: caregiver report, death certificate (when available), and a
biomedical assessment based on caregiver narratives. The specific assessments are
included in Appendix H. 1.
Early infant deaths: Of the ten early infant deaths in Umzimkhulu, eight occurred in
the first 24 hours of life. Seven caregivers said they did not know what caused their
baby's death, and three said it was due to prolonged labor. As one caregiver reported,
7 was left unattended in the maternity ward from 1pm until 7pm. When the night duty
nurses came on, they immediately took me to theatre and performed a cesar[ean] on
me. I gave birth to a baby that was still alive. I then slept through the night. In the
morning the nurses woke me up and told me that the baby had passed away. The
113
nurses explained to me that I had been in labor for a long time so the baby came out
distressed. They told me the baby passed away about 11:00pm.'
No Umzimkhulu babies had death certificates, and the most common probable causes
of death assigned by the biomedical panel were labor related intrapartum asphyxia,
hypoxic ischemic encephalopathy and birth asphyxia.
Of the five early infant deaths in Umlazi, three died in the first 24 hours after birth.
Only one caregiver stated she knew the cause of death, which she stated was a severe
abnormality. Death certificates were available to review for only two of these infants,
both of which stated that the baby died of 'natural causes.' Based on the biomedical
review, three infants were suspected to have died of causes relating to prematurity, one
due to meconium aspiration, and one due to congenital malformation.
Other infant deaths: Twelve Umzimkhulu infants died of an illness that first began at
home. Only three of these caregivers said they did not know what caused their infant's
death while four said 'pneumonia,' three said 'vomiting and diarrhea' or 'sunken
fontanelle,' one said 'sore inside of umbilical cord' and another stated, 'red mark on the
back of her head.' Death certificates were available to review for two of these infants,
both of which stated that the baby died of 'natural causes.' The most common causes of
death assigned by biomedical reviewers were diarrheal diseases (12 deaths), acute
respiratory infections (eight deaths), and sepsis/meningitis/other serious bacterial
infection (four deaths). In six cases, the cause of death reported by caregivers matched at
least one of the suspected biomedical causes of death.
In addition, there were 23 infants in Umlazi whose final illnesses first began at home.
Almost all of the death certificates available for review (eleven of 12) listed 'natural
causes' as the cause of death. Six caregivers reported that they did not know the cause of
114
death, another reported 'evil spirit' as the cause and another said 'traditional illnesses.'
The most common causes of death assigned by biomedical reviewers were acute
respiratory infections (ten deaths), diarrheal diseases (eight deaths), and complications
from HIV/AIDS (eight deaths), which was always assigned in combination with at least
one other cause of death. In ten cases, the cause of death reported by caregivers matched
at least one of the identified biomedical causes of death.
Assessments of the factors associated with infant deaths: Although there were three
caregivers (two Umzimkhulu, one Umlazi) who stated that they did not know what went
wrong when their babies died, and several others (three Umzimkhulu, five Umlazi) who
felt that 'nothing could have saved' their babies, most identified specific factors that they
said played a role in the death. The biomedical team was able to identify factors in all but
four deaths in Umlazi, which they attributed to prematurity or a congenital malformation.
Table 6.3 shows the number of cases for which caregiver/family-related, and health
system-related factors were identified by both caregivers and the biomedical panel. The
specific factors identified in each case are included in Appendix H.2.
Caregiver/family-related factors: In ten cases in Umzimkhulu and ten in Umlazi,
caregivers stated that their own actions or family situation played a role in the deaths of
their infants (Box 1).
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Box 1. Examples of self-blame by caregivers
'The nurses told me that it is my fault that this has happened because I pushed
my baby before it was time for him to come out. [If I have another baby] / will
not push my baby to come out before it's time for him to come out as nurses
said I did. '(Umzimkhulu mother)
'If I did not drink lots of ice water while I was pregnant, maybe the baby would
not have gotten the pneumonia.' (Umlazi mother)
'I blame myself for the death of my baby because I smoked when I was
pregnant. [This] caused the baby to suffer from those chest problems, and then
he had difficulty in breathing.' (Umlazi mother)
Other problems caregivers identified as relating to their own actions include waiting
too long to get to the hospital while they were in labor, not knowing their own HIV status
(which they said prevented their child from getting appropriate treatment), not realizing
the severity of their child's illness, not having enough money to get to the hospital,
listening to the advice of others rather than following their own instincts, and not
listening to the advice of others when they felt they should have.
The biomedical panel identified caregiver/family-related factors in most (18 of 22)
deaths in Umzimkhulu, but in only ten of the 28 deaths in Umlazi. The most frequently
identified in both sites were a delay in seeking care when the baby was ill, not realizing
the severity of the illness based on the child's symptoms, and the provision of home
treatments that had a negative effect on the child. In one case, for example, an
Umzimkhulu caregiver was thought to have inappropriately managed the child's illness at
home because she reported only giving 'panado syrup' (an analgesic) to her child who
had symptoms of diarrhea, dehydration, vomiting and fever. Another Umzimkhulu
caregiver reported giving her infant what was considered by the panel to be a possibly
toxic combination of several traditional and over-the-counter medications.
116
In addition, two caregivers (Umlazi) reported that they discharged their infants from
the hospital against the advice of medical providers. The account of one is given in Box
Box 2. Example of caregiver discharging her child against medical advice
'It all started when she was four months old when she vomited after meals and
started to have fast breathing. After about five hours I took her to hospital. In
hospital she had a temperature with diarrhea. The doctor came and said that
the baby should be kept overnight to control her temperature.
In the morning I decided on my own to take her home because she was not
getting any help apart from panado syrup. Her temperature did not go down
and her head was hot. At home I took her to a Divine Healer who bathed her in
cold water but this intervention did not help.
The next day I took her to another hospital where they also gave her panado
syrup and cough medication. Because in this second hospital she was given the
same treatment like in the first hospital, I decided to take her home and treat
her there. Unfortunately the condition worsened. I wanted to take her back to
hospital but could not get transport as it was in the evening. So she eventually
died at home.' (Umlazi mother)
Access to care factors: Problems accessing health care were cited by caregivers as
having been a factor in six of 22 deaths in Umzimkhulu and four of 28 deaths in Umlazi.
The biomedical panel identified access problems in the deaths of seven infants in
Umzimkhulu and three in Umlazi. The most commonly cited were a lack of transport
from the caregiver's home to a facility, ambulance problems (i.e., a significant delay in
arrival or never arriving), and barriers faced as the caregiver was trying to enter her local
clinic. One caregiver described her difficulties obtaining transport to the hospital while
she was in labor (Box 3):
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Box 3. Umzimkhulu caregiver's account of transport difficulties
'At about six o 'clock at night I started feeling pains on my left buttock, then
at eight o 'clock, the labor started to be intense. This all happened at home.
My husband tried to get [private] transport to take me to hospital but he
could not find it. He called an ambulance but I delivered before it came.
The baby cried but it was a tired sounding cry. It just showed that there was
something wrong with the baby. The ambulance people phoned asking for
directions but my husband told them that I had already delivered. So they
didn 't come.
During the night the baby was suckling my breast normally but in the
morning at about eight o 'clock, I saw him looking extremely tired and
floppy, and he just died on the bed. On this day I had planned to take him to
hospital for an examination but unfortunately he died before I could go.'
Quality of care factors: Caregivers identified problems with the quality of care their
infants received (eleven Umzimkhulu, 19 Umlazi). Similarly, problems with quality were
identified in the majority of cases (17 Umzimkhulu, 18 Umlazi) by the biomedical team.
The most frequently reported problem relating to quality cited by caregivers in both
sites was a delay in being attended to while in labor (Box 4).
118
Box 4. Umzimkhulu mother's account of poor quality of care during labor
'It was during the night when I started feeling labor pains. When we got to
hospital there were night duty nurses. The nurse who was helping me asked
how many babies I have had. I told her that this was my sixth baby. She told
me to sit on the bench and wait. By that time the water had already broken
and I alerted the nurse about this. She told me to walk on my own to the labor
ward. When I felt that the contractions were getting stronger, I called the
nurse to come and help. The nurse answered from the rest room and said there
was nothing she could do to help me because I am an old woman, I must help
myself to deliver the baby. The nurse told me that she will only come when she
hears the baby crying. I saw the blood coming out and I called the nurse again
telling her that something is coming out. The nurse came this time and
observed this. She said to me that this was blood only; the baby was not yet to
be delivered. Another nurse came [and together] they called the doctor but it
took very long for the doctor to come. These nurses asked me while I was in
such pains why I still become pregnant when I have so many kids. They said,
"Is it because President Thabo Mbeki is giving out child support grant?" I
was... deeply hurt by this. After a long time, the doctor came to see me.
I don't know exactly what led to the baby's death, whether it was because
of being forcefully pulled out or it was being in labor for a very long time. The
baby came out with a wound on the head and bleeding. I asked how my baby
died but the doctor said I must ask the nurses. These new day nurses said I
had been in labor for a long time. They criticized the night nurse for not
calling the doctor sooner.'
Other quality problems cited by caregivers included the child being inappropriately
managed or monitored, hospitals having inadequate services, and the provider not
recognizing the severity of the child's illness (Box 5).
Box 5. Umlazi caregiver's account of poor quality of care in the hospital
'My baby was breathing fast and had chest indrawing. I was also sick so I took
him to hospital with me but only I was admitted. I was in hospital for about a
month and so he had to go on formula. On my return home I found that my baby
was very sick so I took him back to hospital.
His condition did not improve even in hospital. He died after about two weeks
and I was told that he had TB [tuberculosis] and pneumonia. If he was correctly
diagnosed the first time and admitted in hospital he would still be alive today.'
The most frequently cited quality of care problem identified by the biomedical team
was insufficient clinical assessment of the child for various illnesses but particularly with
119
respect to HIV. In 15 cases, the biomedical team felt that if the mother had received an
HIV test and tested positive, the child might have received antiretroviral treatment which
could have contributed to a better outcome. In other cases, the biomedical team said that
the provider from whom care was sought (whether public sector, GP, or traditional
healer) failed to recognize that the child was severely ill and needed referral to the
hospital. In addition, the biomedical panel stated their concerns about the specific
remedies provided to both pregnant women and their infants by traditional healers. This
concern was echoed by several of the key informants who work within the health services
(Box 6).
Box 6. Example of informant concerns regarding traditional remedies
'The worst part of it, when they come to us it's when the child is dying... very sick.
We usually get babies plumpyfat. But now some will come in a shocked state, very
dehydrated, with some signs of toxicity in them [from] the herbs. And you know,
you'll find that the child had diarrhea before it went to the traditional healer. And
the traditional healer would give them some muti [traditional herbal- or animalbased medicine] to drink and to give rectally. And that might worsen the condition
of diarrhea. Then the child ends up losing a lot of water and fluid. Then you'll find
them coming in with severely dehydrated babies, unable to cry even, in a very bad
shape. What we've seen is that most of the babies that we get [with
gastroenteritis], they've been given herbal medication.' (Hospital nurse, Umlazi)
Additional quality problems identified by the biomedical team include delays in
attending to women in labor, a prolonged second stage of labor with no intervention, and
inappropriate management of the sick child, which was identified as having occurred at
every type of provider/facility (i.e., hospitals, clinics, GPs, and traditional healers) in both
sites.
120
Biomedical classification of deaths as avoidable, not avoidable, or unable to determine:
The biomedical team was asked to provide their opinion on whether or not the infant's
death could have been avoided given the current resources and technical expertise
available within South Africa. Although they felt they had insufficient information to
make this judgment in six cases in Umzimkhulu and four cases in Umlazi (particularly
without access to infants' medical records), they classified the vast majority of deaths as
having been avoidable (16 Umzimkhulu, 20 Umlazi) (Table 6.4).
Caregiver post-death reflections and social supports: Many comments provided by
caregivers during interviews demonstrated the depth of their feelings of shame, guilt, and
sorrow. In addition, most (ten Umzimkhulu, 22 Umlazi) said that since the death, they
had no one 'counsel' them, no one to 'help' them, and no one with whom they could talk
about their loss. Inadequate social supports and communication about the loss were true
even for most caregivers whose babies died in the hospital: only two caregivers in
Umzimkhulu and one in Umlazi reported that the facility provided counseling to them
following the death of their baby. Many reported that they were never even told by
hospital staff why the baby died (six Umzimkhulu, ten Umlazi), and three (two
Umzimkhulu, one Umlazi) were only told that the baby died hours after the death
occurred. Almost all caregivers (17 Umzimkhulu, 22 Umlazi) reported that they would
like the opportunity to talk with someone, particularly other local caregivers who had
experienced a similar loss.
121
Discussion
This analysis presents caregiver and biomedical assessments of 'what went wrong' in
infant deaths occurring in two under-resourced South African settings. Caregivers'
narratives of their infant's deaths are rarely presented in the literature, however these can
provide critical information regarding the context of the death that is otherwise difficult
to ascertain. Further, by presenting assessments by both caregivers and a biomedical
panel, this study highlights the gap between caregiver and biomedical models of infant
illnesses, particularly with respect to 'what is relevant and problematic...and the type of
action that [is] require[d]' (Hadad, Fran?a & Uchoa 2002, p 1526).
Causes of death: As has been reported elsewhere (Nations 1986; Horta de Figueiredo
Goulart, Somarriba & Xavier 2005), there were considerable differences in the caregiver
and biomedical assessments of causes of death. Overall, the causes assigned by the
biomedical team corroborate the top causes of infant death identified among audited
hospital deaths in South Africa (Patrick & Stephen 2005).
Bradshaw & Nannan (2006) report that under-registration of deaths throughout the
country is extensive; few caregivers in this study had death certificates. When available,
death certificates were of limited use because most assigned the term 'natural causes' as
the cause of death. King (1989) and Bradshaw & Nannan (2006) report that the
stigmatization associated with deaths relating to HIV has contributed to the overuse of
"natural causes" as a cause of death because doctors often are reluctant to specify other
HIV-related complications. The limited utility of the death certificates reviewed for this
study is consistent with what other South African researchers have reported regarding
122
their poor quality (Bradshaw et al 2005; Krug, Patrick, Pattinson & Stephen 2006;
Mashego et al 2007).
Assessments of the factors associated with infant deaths: As Aguilar et al (1998, p i )
have noted, 'it is not enough just to know the medical cause of a child's death. There
should be an investigation into what failed the child, either inside the house or in the
family's use of health services.' In this study, both caregivers and the biomedical team
identified a range of caregiver/family and health system factors that played a role in the
infant's death.
Caregiver/family factors: The specific actions, or inactions, of caregivers and their
families were associated with many deaths. When there was agreement on these factors
between caregivers and the biomedical team, it was most often due to mutual recognition
that the caregiver delayed seeking care for the child. As has been found elsewhere
(Sreeramareddy et al 2006), caregivers in this study were likely to wait to seek care until
they recognized the illness as 'serious.' Poor early recognition of danger signs was
evident due to the fact that some infants died on the way to a provider, while waiting for
consultation or shortly after admittance to hospital.
In addition, as has been reported elsewhere (Khun & Manderson 2007), some
caregivers first tried to treat the child with home care due to difficulties accessing
services. This was particularly true in Umzimkhulu where many women reported that it
can take more than two hours to reach their nearest health facility.
In other cases, the biomedical team identified a caregiver action when the caregiver
did not. As has been reported in other South African studies (van der Kooi & Theobald
2006; Veale, Furman & Oliver 1992; Kauchali, Rollins, Bland & van den Broeck 2004;
123
Steenkamp, Stewart & Zuckerman 2003), the biomedical team suggested that caregivers'
use of traditional treatments and muti (whether during pregnancy or during the child's
illness) contributed to the poor outcome.
Janzen (1992) attributes the continued widespread use of traditional medicines to a
combination of a strong cultural heritage of their use as well as inadequacies in western
medicines and facilities. However, patients presenting for care at health facilities often do
not share their experiences of using them, which makes it more difficult for a provider to
assess the full history of the patient's illness (van der Kooi & Theobald 2006).
Health system factors: There were important differences in the caregiver and
biomedical assessments of health care quality. Caregivers were less likely to identify
specific clinical problems with the assessment and management of their child's illness
from any specific provider. Caregivers also were less likely to identify a provider's lack
of referral to the hospital as problematic. Problems relating to providers underestimating
the need for hospitalization among infants have been reported elsewhere (Bhandari et al
2002).
In addition, the attributes that some caregivers assigned to health care quality differed
substantially from those assigned by the biomedical team. For example, even some
caregivers whose infants died within hours of a consultation were still likely to rate the
provider's care as 'good' if they and their infants were treated with 'respect,' if they were
kept informed of their baby's progress, if they were seen in a timely manner, and if they
were given medications. Unfortunately, staff discourtesy towards and even abuse of
patients have been documented as occurring within South African public health services
(Jewkes, Abrahams, Mvo 1998; Wood, Maepa & Jewkes 1998).
124
Further, as evidenced in this study, different interpretations of efficacy can relate to
caregivers' explanatory models of the illness and their judgment that some illnesses are
better treated with traditional medicines than biomedicines. Indeed, there is considerable
skepticism and disillusionment with biomedicine, in part because of the problems such as
those noted above relating to poor delivery, inaccessibility and insensitivity. Vaughan
(1991) states that another reason may be because biomedicine, in contrast to traditional
healing, often disregards underlying psychological, symbolic and social causes.
Biomedical classification of deaths as avoidable, not avoidable, or unable to determine:
In this study deaths due to illnesses such as diarrhea, malnutrition and acute respiratory
infections were considered preventable if the child had been diagnosed early and
adequately and if timely treatment had been instituted. As a result, the biomedical team
classified the vast majority of deaths in this study as avoidable. Even most of the deaths
suspected to be related to HIV were classified as avoidable given that South Africa has
had a Prevention of Maternal to Child Transmission of HIV (PMTCT) program in place
since 2001. Unfortunately, operational research on the PMTCT program demonstrates
that it has been limited by poor implementation, particularly in under-resourced areas
(Doherty, McCoy & Donohue 2005; Patrick & Stephen 2005).
Implications: The study results have several implications for policies and programs.
Care giver/family factors: First, there is a need to improve prompt recognition of the
severe nature of illnesses such as diarrhea and acute respiratory infections among infants.
Community IMCI, currently a programmatic initiative but poorly implemented within
these settings, could play a critical role in improving local knowledge of these danger
signs.
125
Unfortunately, in this study, even some caregivers who reported attending a health
service with their sick child reportedly returned home without a clear understanding of
how to continue to treat the child at home, or when to return to the health service for
additional care. Since most births occur in hospitals and many caregivers reported having
taken their children for well-child visits prior to the final illness, there are clearly missed
opportunities for providing relevant health education messages to new mothers and their
families. Key informants suggested that community health workers could play a more
prominent role in supporting the work of health services by providing health education
and prevention messages in the field. Studies from other resource-poor settings have
found that community health workers can have a significant impact on maternal and child
health (Emond et al 2002; Friedman et al 2007; Brown 2007).
The delays in care-seeking in this study also were attributable to lack of recognition
of the severity of the illness. Health education programs should target women and other
adults in the household or messages should be provided via mass media to the broader
community. Further, for caregivers who reported an externalizing cause of their child's
illness, efforts to incorporate local knowledge and understandings into health messages
around childhood illnesses will make these messages more acceptable. Appropriate
health education efforts should build upon rather than confront traditional understandings
and practices whenever possible. Other studies have shown that this is not only possible,
but effective (Green, Zokwe & DuPress 1995; Aries et al 2007).
Health care access factors: The findings also have implications for improving access
to health services. In some cases, caregivers reported significant delays when they
attempted to utilize ambulance services, or that the ambulance never actually arrived.
126
This is consistent with a 2003 Health Systems Trust study which documented significant
delays (up to three times longer than expected) throughout the KwaZulu Natal province
and suggests that the efficiency and adequacy of local emergency vehicle services should
be evaluated. Further, key informants suggested that mobile services be implemented in
informal settlement areas and 'deep rural' areas where families particularly have
difficulties accessing care.
Health care quality factors: Examples of the poor assessment and management of
women in labor or of sick children were apparent regardless of the type of provider seen
(i.e., public or private biomedical, or traditional). The fact that some infants died shortly
following a clinical consultation and that so few were referred to a hospital during their
final illness suggests that providers of all types are deficient in either their knowledge or
implementation of standardized clinical guidelines. Further, many of the suspected causes
of death among the early infant deaths (e.g., intrapartum asphyxia, birth trauma, and
hypoxia) suggest inadequacies in the care of women in labor and the resuscitation of
newborns. This is in spite of the fact that protocols for managing all aspects of labor are
widely available in South Africa (Pattinson, Woods, Greenfield & Velaphi 2005).
In some cases it was not clear whether an infant's clinical care was mismanaged, as
some of these children may have presented when they were so severely ill that there was
little clinical care could do to help. However, even among those cases where it is not
possible to determine whether or not clinical protocols were followed, there are clear
cases of mismanaged communication between providers and caregivers, particularly
within public facilities. Poor communication is a problem that is likely to impact the
future use of public health services.
127
Problems with quality of care also were apparent among both GPs and traditional
healers. Tawfik, Northrup & Prysor-Jones (2002) suggest that one strategy to improve
private providers' quality of care is to motivate them via financial incentives (e.g.,
subsidized vaccines, provision of free drug samples and other materials), certificates and
posters they can display that show they have completed specific training programs, or
advertisements to the community so that families are aware of appropriate practices and
the care they are entitled to receive.
Consistent with recommendations of both the World Health Organization (2006) and
UN AIDS (2002), key informants in this study stated that there should be better linkages
between public services and traditional healers. The literature provides examples of
successful coordination with traditional healers in South Africa, particularly around
HIV/AIDS prevention (Green, Zokwe & Dupree 1995; Giarelli & Jacobs 2003). Efforts
to improve collaboration between traditional healers and health services must include
trainings for health service staff as well to sensitize them to the importance of having a
partnership and to provide them with specific guidance as to how collaborations will
function.
In conclusion, these findings suggest that most of the infant deaths reviewed were
preventable and that a multi-dimensional approach is needed to address the various
factors associated with infant death in these settings. As Chopra, Neves, Tsai & Sanders
(2007) caution, public health approaches that are not integrated with the wider political
and social context within which they are implemented will be neither effective nor
sustainable. The caregivers in this study faced multiple challenges as they tried to save
their babies, and all suffered terribly when their efforts failed or when they were failed by
128
the health system. The fact that so many of the deaths were identified as 'avoidable'
suggests that the goal of reducing the burden of infant death in these communities is
attainable and should be a policy priority.
Limitations: Care-seeking behavior was based on the caregiver's recollection of an event
and as such, may be subject to error. However, Snow et al (1993) have found that recall
for significant events such as a death in the family typically is good. Further, interviewers
were trained to confirm respondent statements with follow-up questions in order to
identify discrepancies or omitted information and correct inconsistencies.
Data obtained from the caregiver interviews relied on field researchers' translations
(and therefore interpretations), which has the potential of reducing the reflection and
impact of patients' original views (Aries et al 2007). Intensive training prior to data
collection and ongoing communications with field researchers regarding the data
obtained sought to reduce this problem. In addition, the professional backgrounds of the
interviewers may have evoked desirable answers although efforts were made to minimize
this problem by providing assurances to respondents during the informed consent process
that there were no right or wrong answers, their comments would be anonymous and
confidential and the interview was not in any way intended to be judgmental.
The lack of hospital records and death certificates meant that most biomedical
assessments of the cause of death were based solely on caregivers' descriptions of illness
symptoms and the specific circumstances surrounding the death. While the availability of
clinical data would have facilitated this task, in only one case did the biomedical panel
feel they had insufficient information to identify one or more possible causes of death.
The social autopsy instrument utilized incorporated aspects of the World Health
129
Organization's standard verbal autopsy algorithms (Anker et al 1999), however, in the
absence of available hospital records, utilization of the full verbal autopsy instrument in
combination with a social autopsy could yield more information relevant to the cause of
death.
The dearth of hospital records also made it impossible to validate, as originally
intended, caregivers' narratives regarding their care-seeking and the treatments children
received in facilities. Finally, as has been found elsewhere (Castro, Campero, Hernandez
& Langer 2000), in some cases the information provided by caregivers did not facilitate
an evaluation of the technical quality of care received in facilities. Future efforts may
better assess quality of care if local health providers and staff become research partners
and participate in the ongoing assessment of deaths occurring among their infant patients.
Acknowledgements
This research was funded by the Eunice Kennedy Shriver National Institute of Child
Health and Development, Rockville, MD (R03HD052638). The content is solely the
responsibility of the authors and does not necessarily represent the official views of the
National Institute of Child Health and Development or the National Institutes of Health.
130
Table 6.1: Background characteristics of caregivers and infants (N)
Caregiver Characteristics
Caregiver type
Mother (N)
Grandmother (N)
Age in years (range)
Maternal
Grandmother
Age unknown
Parity at recruitment (N)
1
2-4
>5
Any other children died (N)
No
1
2 or more
Unknown/missing
Education (N)
None
Primary
Secondary or more
Unknown
Marital status at recruitment (N)
Single
Married
Cohabiting
Widowed
Divorced/Separated
Unknown/missing
HIV status at recruitment (obtained verbally) (N)
Known positive
Unknown/negative
Infant Characteristics
Sex (N)
Male
Female
Age at death (range)
Birth weight (N)
Less than 1500 grams
Less than 2500 grams
>2500 grams
Unknown
Birth certificate obtained (N)
Yes
No
Death certificate obtained (N)
Yes
No
131
Umzimkhulu (N=22)
Umlazi (N=28)
21
1
27
1
17-36
44
4
17-36
53
6
14
6
2
17
10
1
18
4
0
0
24
2
1
1
0
4
13
5
0
1
18
9
7
12
0
0
0
3
20
1
0
0
0
7
4
18
12
16
9
13
<1 d a y - 35 weeks
11
17
<1 d a y - 4 3 weeks
1
0
4
17
3
1
3
21
9
13
15
13
3
19
14
14
Table 6.2: Timing and place of death (N)
In hospital
While waiting in hospital queue
Less than 48 hours after admittance
48 hours or more after admittance
After hospital delivery
At home
After discharge from hospital during the same disease episode
After leaving hospital against medical advice
After examination at clinic (without being given referral to hospital)
After examination by traditional healer
After examination by GP
After home birth
While waiting for ambulance to arrive (which took 5 hours)
After receiving no medical care
Other
In GP's office
In traditional healer's office
On route to hospital
On way home after medical discharge (after birth)
Umzimkhulu
(N=22)
13
0
4
2
7
5
0
0
0
1
1
2
0
1
4
1
1
1
1
Umlazi
(N=28)
21
1
3
14
3
6
1
1
1
1
1
0
1
0
1
0
0
1
0
Table 6.3: Deaths with associated caregiver/family, health care access, and health
care quality factors, as assessed by caregivers and biomedical panel (N)
Biomedical
assessment
Early infant deaths (shortly after birth or without leaving birth facility)
4
Umzimkhulu
5
6
3
Umlazi
1
1
0
0
Other infant deaths (illness started at home)
12
3
Umzimkhulu
5
3
Umlazi
4
3
9
9
Total
deaths
Quality of
care factors
Caregiver
assessment
Biomedical
assessment
Access to care
factors
Caregiver
assessment
Biomedical
assessment
Caregiver/
family factors
Caregiver
assessment
Associated Factors
7
4
10
2
10
5
4
15
7
16
12
23
Table 6.4: Biomedical classification of death as avoidable, unavoidable or unable to
determine based on caregiver report (N)
Avoidable
Early infant deaths
Umzimkhulu
6
Umlazi
1
Other infant deaths (illness started at home)
10
Umzimkhulu
19
Umlazi
36
Total
132
Unavoidable
Unable to determine
0
2
4
2
0
2
4
2
2
10
CHAPTER SEVEN
IMPLICATIONS AND CONCLUSIONS
IMPLICATIONS AND CONCLUSIONS
This chapter presents a summary of the results, key limitations and strengths,
research, programmatic and policy implications, and conclusions of the study.
Overview of Study Findings
This study analyzed factors that played a role in the deaths of infants in two resourcepoor settings of South Africa utilizing in-depth interview data obtained from caregivers
of deceased infants and local key informants. Caregivers reported their care-seeking
'pathways' during the child's last illness and the various factors that influenced their careseeking choices. In addition, both caregivers' explanatory models and biomedical models
of the illness that led to death were obtained, and clinicians provided their assessment of
whether or not, with the provision of prompt and appropriate care reflecting current South
African standards, the death could have been avoided.
Care-seeking pathways and influences on care-seeking: Most caregivers whose infants
became sick at home reported taking their sick children to a public facility at some point
during the final illness (22 in Umlazi, 7 in Umzimkhulu). Traditional healers also were
utilized (4 in Umlazi, 8 in Umzimkhulu), as were private allopathic providers (7 in
Umlazi, 5 in Umzimkhulu), and over-the-counter and traditional home remedies (11 in
Umlazi, 10 in Umzimkhulu). In spite of using multiple types of care (up to 4 in
Umzimkhulu and up to 8 in Umlazi) few caregivers reported being referred from one type
to another. Instead, most decided on their own to seek additional care when their child's
health did not improve, moving between public and private providers, and between
allopathic and traditional providers.
134
The various factors influencing care-seeking were organized into three domains.
Structural factors represented aspects of a caregiver's community, household or personal
situation that influence their living conditions, resources and opportunities. Health system
factors related to health care access and quality. Caregivers' explanatory models of
infants' illnesses represented their assessment of the severity and etiology of the illness.
In this study, the most important structural factors found to influence care-seeking
were caregivers' limited autonomy in decision-making and their own personal ill health
during the time of the infant's illness. The most important health care factors found to
impact caregivers' ability or willingness to use services during their child's final illness
included the physical distance of facilities, poorly functioning ambulance services and
private transport services, facilities' limits on the number of patients seen per day,
medicine stock outs, wait times, insufficient staff supply, and negative provider demeanor
at public health services.
In addition, caregivers' explanatory models of their infants' illnesses were found to
be important determinants of whether, and from where, treatment was sought. Specific
aspects of this domain identified as important included caregivers' assessment of the
severity of their child's illness and infant danger signs that required immediate medical
attention, their attribution of the illness to a medical or an externalizing cause, and their
judgment that a particular type of treatment (i.e., allopathic or traditional) was likely to be
the most effective. Overall however, care-seeking among caregivers in this sample varied
considerably and incorporated both allopathic and traditional treatments and remedies.
Many caregivers described using multiple sources of care in their efforts to save their
infants.
135
Factors associated with deaths: The study reported both caregivers' explanatory models
and biomedical models of 'what went wrong' with respect to each identified death.
Although some caregivers said they did not know what caused the death of their
infants, others identified medical causes (e.g., pneumonia) or symptoms (e.g.,
'vomiting'), or what Young (1979) termed externalizing causes (i.e., pathogenic agents or
events that occur outside the body such as 'evil spirit'). Most causes of death assigned by
the biomedical team for perinatal deaths related to inadequacies in the care of women in
labor and the resuscitation of newborns. Most assigned by the biomedical team for older
infants who died were preventable infectious and parasitic diseases. In spite of some
similarities, the majority of the identified causes of death in this study differed between
caregivers and the biomedical team.
Assessments of the factors associated with the death identified a range of actions, or
inactions, of the caregivers/families themselves and of inadequacies in the accessibility
and quality of local public, private and traditional health services. When there was
agreement between caregivers and the biomedical team that 'caregiver/family factors'
were associated with the death, it was most often due to mutual recognition that the
caregiver delayed seeking care for the child. Poor early recognition of danger signs
indicating the need to take the child immediately for care was common, as evidenced by
the fact that some infants died on the way to a provider, while waiting for consultation in
a facility of provider's office or shortly after admittance to hospital. Difficulties accessing
services provided a further disincentive to seeking prompt care so some caregivers
reported first trying to treat the child with home care. Other caregiver/family factors that
were identified by the biomedical team in particular were discharging sick infants from
136
the hospital against medical advice, and the use of traditional treatments and muti either
during pregnancy or during the child's illness.
There was general agreement between caregivers and the biomedical team regarding
problems created by poor health care access; however, important differences emerged
with respect to problems created by the quality of care the child received. Caregivers
were less likely than the biomedical team to identify specific problems with the clinical
assessment and management of their child's illness and they were less likely to identify a
provider's lack of referral to the hospital as a problem associated with the death. In
addition, the attributes that some caregivers assigned to health care quality differed
substantially from those assigned by the biomedical team. For example, even some
caregivers whose infants died within hours of a consultation were still likely to rate the
provider's care as 'good' if they and their infants were treated with 'respect,' if they were
kept informed of their baby's progress, if they were seen in a timely manner, and if they
were given medications.
Biomedical classification of deaths as avoidable, not avoidable, or unable to determine:
The biomedical panel assessed whether or not each infant death was avoidable taking into
consideration the current context of available health care within South Africa. The vast
majority of deaths in this study (16 in Umzimkhulu, 20 in Umlazi), including those
thought to be related to HIV, were classified as avoidable.
Limitations and Strengths
Limitations: There were several limitations to this study. First, the sampling procedures
may have resulted in a sample that is not representative of the population of families
137
experiencing infant deaths in either site. For example, women who were initially
recruited into the Good Start study (from which this study's sample was drawn) were
those who presented either for antenatal care or to give birth in a health facility. Although
local statistics indicate that most women in both sites do in fact seek antenatal or delivery
care, women who do neither would be excluded from this sample. Further, because of
high mobility within each site and difficulties reaching certain homes (either due to poor
roads during the rainy season or because the home was located in an area considered too
dangerous to enter), it was not possible to interview some caregivers who experienced the
loss of an infant. It is these same caregivers who may be the most fragile and isolated.
Similarly, the sample of key informants may not represent the full range of
perspectives or sentiments of community leaders or health professionals in each site. This
is a difficulty faced by any study relying on a small number of informants (Maxwell
1996). However, by asking similar questions to multiple actors in the community, the
methods were designed to determine the extent to which sentiments are shared across the
community or represent atypical perspectives on the issues covered in the key informant
instrument.
The potential for measurement error also exists, especially when there was a longer
time period between the infant's death and the interview. However, this error is expected
to be random and is not likely to represent a source of bias. In addition, Snow et al (1993)
have found that recall for significant events such as a death in the family typically is
good. Further, interviewers were trained to confirm respondent statements with follow-up
questions in order to identify discrepancies or omitted information and correct
inconsistencies.
138
The possibility also exists that inaccuracies in data reporting may represent sources of
bias. For instance, some studies have found the potential for a distorted account of events
when parents say they feel at fault for the death, for example, for not bringing a child to
the hospital earlier (Bentley 1988; Snow et al 1992). Another example would be if there
were respondents who were reluctant to express their true opinion on the quality of the
child's health care because they thought the provider or facility might find out about their
responses. Other factors that may be related to the child's death (such as the caregiver's
own health) also may have impacted their ability to recall events accurately. In addition,
data obtained from the caregiver interviews relied on field researchers' translations (and
therefore interpretations), which has the potential of reducing the reflection and impact of
patients' original views (Aries et al 2007).
Steps were taken to minimize these sources of error and potential bias. By conducting
the interviews in the respondents' homes with Field Researchers from the community, it
is hoped that the interview setting made respondents comfortable and made it less likely
that they withheld their true opinions. In addition, assurances provided to participants
during the informed consent process that there were no right or wrong answers, that their
comments would be kept anonymous and confidential and that the interview was not in
any way intended to be judgmental likely helped to minimize the sources of inaccuracies
in the data. Further, the Field Researchers conducting the interviews had considerable
health-related experience and were well versed on the experience of ill health in South
Africa. Their skills and background knowledge, combined with pre-data collection
training that included a focus on being sensitive to respondents' physical and mental
139
ability to answer interview questions and on recording respondents' statements verbatim,
aimed to minimize problems related to poor recall and translation.
In addition, the lack of both hospital records and death certificates (particularly with
meaningful information) meant that most biomedical assessments of the cause of death
were based solely on caregivers' descriptions of illness symptoms and the specific
circumstances surrounding the death. However, in only one case did the biomedical team
report they had insufficient information to identify one or more possible causes of death.
The dearth of hospital records also made it impossible to validate, as originally intended,
mothers' narratives regarding their care-seeking and the treatments children received in
facilities.
Finally, the findings of this study are not intended to be generalizable to other similar
South African settings due to the fact that the study's focus is to provide an in-depth
account of the situation within each site. However, because many of the socio-economic
and cultural attributes of these sites are similar to those found in other townships and
rural areas, there is no obvious reason that the results might not apply more generally.
This has been referred to as "face generalizability" or "transferability" by qualitative
research methodologists (Maxwell 1996; Whittemore, Chase & Mandle 2001).
Strengths: This is a unique descriptive study that provides new and critical
information about the factors associated with infant deaths in impoverished areas. The indepth interviews highlight the complex pathways and underlying mechanisms that
precede infant deaths in high risk communities, including those that may have been
previously undetected by quantitative research. Instead of focusing on what is happening
and who is affected, this method provides new information to help understand why the
140
deaths occur. This information can support the development of recommendations for how
service systems and public policies can better match the real life circumstances of women
and infants at risk. Rarely are such recommendations based on client-generated data,
although it can be expected that this will strengthen their relevance and appropriateness.
In addition, the findings can enable local leaders and public health professionals to
develop targeted interventions and policies that address factors associated with infant
mortality and improve service systems and community resources.
Further, this study helps to explain how the health system fits into the broader social
context of the community in responding or failing to respond to the health needs of a
family prior to the death of a child. By using a broad definition of what constitutes the
'health system,' it also provides information about the role of other providers such as
private general practitioners and traditional healers - the people who are often the first
point of care for families in South Africa (Republic of South Africa 2003; Richter 2003).
Implications for Research, Policy and Programs
Research implications: Because this was an exploratory, descriptive study, there are
several implications for research activities that might further understanding of the content
areas under investigation. For example, future efforts that utilize a probability sampling
method could enable comparisons to be made among the respondents and inferences to
be made to the general population. This could help to determine the caregiver sociodemographic characteristics (e.g., education level, family income) that are more or less
likely to be associated with infant deaths in these particular settings. Such a sampling
method also might be useful to conduct an analysis that compares infant deaths with 'near
141
misses,' i.e., infants who suffered significant illnesses but who did not die as a result of
the illness. 'Near miss' analyses have been conducted with respect to maternal deaths and
have been found to reveal important information about both deficiencies and positive
elements in the provision of health care (Oladapo, Sule-Odu, Olatunji & Daniel 2005;
Pattinson & Hall 2003).
Future research efforts among caregivers of infants also might aim to develop a
decision model (i.e., the 'rules' for when decisions are made) in order to predict caregiver
actions. This would entail eliciting information on hypothetical illness situations in order
to elucidate the probable sequencing of care-seeking when infants experience serious
illnesses.
In addition, although the social autopsy instrument utilized in this study incorporated
aspects of the World Health Organization's standard verbal autopsy algorithms (Anker et
al 1999), future efforts that utilize a full verbal autopsy instrument in combination with a
social autopsy may yield more information to determine the cause of death in areas with
poor hospital records or for deaths that occurred outside of facilities.
Finally, in order to facilitate a more complete evaluation of the technical quality of
care received in facilities, future research efforts could enlist health providers and staff as
research partners to participate in the ongoing assessment of deaths occurring among
their infant patients. Expansion of the current South African PPIP and Child PIP
programs to additional facilities (while incorporating the social autopsy approach) would
facilitate this effort.
Policy and program implications: A better understanding of what failed the child during
his or her final illness, either at home or in the care given to the child by various
142
providers outside the home, can guide the content of child health programs and the
allocation of resources within them (Schumacher et al 2002). The results of this study
indicate that prompt implementation of many simple and already well-recognized
strategies could have a significant impact on child survival in these settings. However,
initiatives developed to address the problem of infant death in these settings also must
consider innovative and multifaceted approaches. For example, initiatives should take
into consideration how to improve utilization of health services, while also determining
how, and whether, the health system can better compensate for structural problems such
as poverty and caregivers' lack of decision-making autonomy, and local explanatory
models of childhood illnesses that may not encourage care-seeking at health services.
Frameworks to initiate innovative approaches are already outlined in many of the
policies and strategic plans of the national and provincial departments of health in South
Africa. For example, the HIV/AIDS/STD Strategic Plan for South Africa expresses the
importance of collaborating with traditional healers to improve care-seeking behaviors, to
improve referral systems between traditional and allopathic services, and to sensitize
public health sector workers regarding traditional medicines (South African Department
of Health 2000). The challenge, however, is that the specific activities needed to
implement this type of collaboration at the local level have not been identified for health
workers and administrators.
Additional policy and program implications of the study findings are outlined below.
Health education: Several key informants in both sites expressed the need for health
education (either through the media, community workshops or via Community Health
Workers) to improve knowledge among caregivers about appropriate feeding, hygiene,
143
infant danger signs and proper care of sick infants. One hospital matron (Umlazi)
suggested that these messages be introduced to women starting in pregnancy, for
example, when they present at antenatal care clinics, and then continued at each
subsequent pediatric contact. Another hospital matron (Umzimkhulu) suggested that
Community Health Workers be given in-service trainings to ensure that they are able to
teach women in the community how to recognize severe illnesses and when to seek care.
However, because lack of decision-making autonomy was identified as an important
problem facing women in these settings, other family members (particularly grandparents
and husbands/partners) should be targets of health education messages as well. Two key
informants (both public sector nurses in Umzimkhulu) suggested that local health
education workshops open to the entire community be held on a broad range of maternal
and child health issues including those listed above.
Further, the education messages given should be sensitive to and incorporate local
explanatory models of illness causation and cultural practices. Initiatives that do not
address such local cultural issues may face substantial challenges or, in fact, be
ineffective (Kauchali, Rollins, Bland & van den Broeck 2004). Because lack of financial
resources (for example, to pay for transport to reach facilities) also was identified among
many respondents, health education messages could be incorporated into development
initiatives that aim to improve women's empowerment and economic stability.
Access to care: Several initiatives could be implemented to address current access to
care problems. For example, some caregivers reported significant delays when they
attempted to utilize ambulance services, or that the ambulance never actually arrived.
This suggests that local health authorities must prioritize how to ensure the efficiency and
144
adequacy of local emergency vehicle services. If such services cannot be expanded,
government authorities should work with local community leaders to develop initiatives
that reimburse families for the cost of private transportation services.
In addition, expansion or implementation of both mobile services and community
health workers could support the work of the health services, particularly within informal
settlement areas and 'deep rural' areas where families report problems accessing care.
Key informants in both sites stated this need:
'For the area of Umzimkhulu, you will find that there are few of these carers,
especially because they are not being paid. So it is not easy for them to go every day
up and down [throughout the villages]. It is not a process that is working fine the way
it's supposed to be.' (Hospital Matron, Umzimkhulu)
'We've asked the health department to increase the number of community health
workers. Here in Umlazi, we've got 46. And it's a drop in an ocean. Forty-six cannot
do the informal structures, the formal [areas], the creches....' (Hospital Matron,
Umlazi)
Quality of care: The findings of this study point to the need to improve the quality of
health care provided to infants by all types of providers (i.e., public, private allopathic,
and traditional) operating in the sites. Specific quality of care areas in need of
improvement include the recognition of the symptoms of serious illness, referral criteria,
hospital admission and discharge criteria, as well as an improvement in the
implementation of case management protocols (e.g., through better supervisory methods
to ensure that protocols are followed) and better adherence to PMTCT program
guidelines. In addition, since caregivers had very specific ideas about what constituted
quality care (for example, timely assessment and respect) these attributes need to be
incorporated better into staff training programs. As Aguilar et al (1998, p 29) state,
145
'Providers can also use the narratives [obtained via a social autopsy] to teach appropriate
standardized case management and counseling skills.'
Further, the findings revealed clear cases of mismanaged communication between
clinical staff and caregivers. For example, some caregivers reportedly returned home
after a consultation without a clear understanding of how to continue to treat the child at
home, or when to return for additional care. In addition, many caregivers reported not
knowing why their baby died. The principles outlined in the South African Patient's Bill
of Rights, typically posted within public health facilities, must be better operationalized
so that caregivers know it is their right to ask providers (and to understand) what
happened. This knowledge is critical to prevent future deaths within the same families.
Key informants suggested that better working conditions and incentives for public
sector staff are needed in order to improve the quality of care that these employees
provide. A recent salary increase for public sector nurses (instigated in response to the
2007 public sector strike) might assist in this regard, as might the additional allowance
instituted by the national Department of Health for personnel working in certain areas
based on a so-called 'in hospitability index' (Reid 2006).
Quality of care provided by other providers in the community: As stated above, many
of the identified problems with quality of care (particularly with respect to poor
recognition of serious illnesses, inadequate referral to the hospital, and inappropriate or
inadequate treatments) also were apparent among both GPs and traditional healers
consulted. One strategy to improve private providers' quality of care that may be
effective within the South African context is to motivate them via financial incentives
(e.g., subsidized vaccines, provision of free drug samples and other materials),
146
certificates and posters they can display that show they have completed specific training
programs, or advertisements to the community so that families are aware of appropriate
practices and the care they are entitled to receive (Tawfik, Northrup & Prysor-Jones
2002). In addition, linking with drug companies to improve management of childhood
illnesses may be an effective strategy in South Africa where the pharmaceutical industry
is well established.
Strategies also are needed to improve the quality of care provided by traditional
healers. Almost all key informants felt strongly that better linkages between public
services and traditional healers are needed to accomplish this goal. As one hospital
matron (Umlazi) said,
7 would look at this closer in this sense: if we bring them along, we'll be teaching
them to change their practices that are not healthy or good for the baby. If I were the
Department of Health, I would call them to come closer, work with us, teach them to
use homeopathic medicines and tell them that we can change the traditional
medicines to western ones inform of supplements, mixtures, capsules, tablets, the
very same medicines that they are using. And how they should preserve it, not to get
rotten. They really need training on how to prepare their own medicines in a better
way.'
Some of the traditional healers interviewed as key informants stated that they also
would welcome the opportunity to undergo additional training from health providers or
non-governmental organizations. As one Sangoma from Umzimkhulu stated, 'If the
traditional healers can work together with the health services more people will be
healthy and won't die.'
Several examples of successful collaborative efforts exist in the literature, particularly
around HIV/AIDS prevention (Green, Zokwe & Dupree 1995; Giarelli & Jacobs 2003).
In this study, some of the specific strategies suggested by key informants to improve the
147
quality of care provided by traditional healers and to integrate them better with health
services include:
•
conducting training workshops on key infant and child health issues, infant
danger signs and when to refer to hospital, how to ensure appropriate dosages,
and the harmful effects of some traditional medicines
•
providing a space/center for them to attend to clients, to access supplies (e.g.,
gloves and condoms) and health education materials for their clients, and
participate in trainings/workshops, and
•
recruiting traditional healers to act as partners for patient tracing, long term
follow up, and counseling.
Efforts to improve collaboration between traditional healers and health services must
include trainings for health service staff as well to sensitize them to the importance of
having a partnership and to provide them with specific guidance as to how collaborations
will function.
Conclusions
This study provides new information regarding the context in which infant deaths
occurred in two under-resourced South African settings, the factors impacting caregivers'
willingness or ability to seek care for their sick children, and factors that contributed to a
breakdown in the health 'system' for these children. The results demonstrate some of the
very specific ways that poverty, limited autonomy in decisionmaking, poor access to and
quality of health care, and local understandings of illnesses combine to result in high
rates of (mostly preventable) infant death.
148
These findings reiterate the main premise of the 1984 Mosley & Chen Analytic
Framework for Child Survival, utilized within the conceptual framework for this study,
which is that socioeconomic factors, cultural factors, and biologic disease processes often
function as inter-connected determinants of survival. The relationship between these
factors can have particularly severe consequences for children, among the most
vulnerable citizens in any society (Balch, Johnson & Morgan 1995). This suggests that
more than just targeted public health interventions are needed to address the problems
identified in this study. Indeed, the political economy of health in under-resourced
settings such as those in this study must be addressed if there are to be significant and
sustainable reductions in infant mortality rates.
The caregivers in this study faced multiple challenges as they tried to save their
babies, and all suffered terribly when their efforts failed or when they were failed by the
health system. The fact that so many of the factors associated with the deaths were
identified as 'avoidable' suggests that the goal of reducing the burden of infant death in
these communities is attainable and should be a policy priority.
149
APPENDICES
APPENDIX A: Key Informant Interview Guide
APPENDIX B: Caregiver Interview Instrument
APPENDIX C: Caregiver Interview Instrument Newborn Supplement
APPENDIX D: Study Advisory Group members
APPENDIX E: Informed consent forms (English, Xhosa
and Zulu versions)
APPENDIX F: Data abstraction form for medical records
APPENDIX G: South African Perinatal Problem Identification
Programme (PPIP) and Child Healthcare Problem
Identification Programme (Child PIP) Code Lists
of Avoidable and Modifiable Factors
APPENDIX H: Detailed tables based on caregiver and biomedical
assessments of causes of death (Manuscript 3)
H. 1 Caregiver and biomedical assessments of
cause of death
H.2 Summary of factors associated with infant
deaths, as assessed by caregivers and biomedical
panel
150
APPENDIX A: KEY INFORMANT INTERVIEW GUIDE
FACE SHEET
PQl. Study Site
Umzimkhulu •
Umlazi D
PQ2.Interviewer(s)
PQ3. Occupation of key informant
PQ4. Date and time of first attempt
at interview
/
/
/
/
/
/
Time:
PQ5. Date and time arranged for
second interview attempt
Time:
PQ6. Data and time arranged for
final interview attempt
Time:
151
1. In your opinion, how easy or hard is it for a mother to get the health care services
she needs for her sick baby in Umzimkhulu/Umlazi (Probe regarding different
types of health care, e.g., public health services, traditional healers, pharmacists.)
If a mother needs some other type of social support, how hard do you think it is
for that mother to get what she needs? End topic with, "Is there anything else you
would like to add?")
2. How desirable would you say the health care and support services available to
families with infants in Umzimkhulu/Umlazi are? In other words, do you think the
quality of services is good or do you think there are problems with quality? What
are the reasons a mother with a very sick infant might not try to get care from
public health services for her infant? (Probe about the quality of other sources of
services, e.g., traditional healers, pharmacists, community health workers, etc.
End topic with, "Is there anything else you would like to add? ")
3. In what ways might the behaviors of mothers and caregivers in Umzimkhulu/
Umlazi contribute to poor infant health or infant death? What do you think are the
reasons for these behaviors? End topic with, "Is there anything else you would
like to add? ")
4. Please talk about any other factors or barriers that, in your opinion, contribute to
the high number of infant deaths in Umzimkhulu/Umlazi. These might be factors
that relate to community and health care services, to the way households function,
to the way mothers care for their infants, or to the infants themselves. End topic
with, "Are there any other important factors or barriers that you think contribute
to infant deaths in Umzimkhulu/ UmlazP. ")
5. Do you have any recommendations for improving health care for women and their
infants in Umzimkhulu/UmlazP. What are some important opportunities that
should be considered and perhaps incorporated into programs? What do you think
the most important strategies are that should be taken in order to save infants?
End topic with, "Are there any other recommendations that you would like to
make?")
CLOSING THE INTERVIEW
Thank you so much for taking the time to speak with me today. Your comments are very
valuable and will help us to better understand the problems faced by families with sick
babies. Please be assured that your comments will be kept anonymous. As soon as the
study is complete, we will present a summary of our findings at (name of community
forum to be determined) which you are very welcome to attend. Do you have any
additional questions you would like to ask about the study we are conducting? (Answer
any questions the respondent asks as best as you are able.)
Thank you again. I sincerely appreciate your time.
152
APPENDIX B: CAREGIVER INTERVIEW
INSTRUMENT
I. INTRODUCTORY DATA
A. Participant code:
B. Interviewer code:
C. Mother's initials:
Initials:
D. Date of infant's birth (dd/mm/yyyy):
DOB:
E. Date of interview (dd/mm/yyyy):
DOI:
/
/
/
/
II. CHOOSING THE CORRECT RESPONDENT
QUESTIONS AND
ANSWERS
FILTERS
F. What is your relationship to Mother
the baby?
Father
Grandmother
If more than one person is
Grandfather
present for interview, check
Aunt/Uncle
all that apply
Sibling
Other relative (specify)
Non-relative caregiver
G. Where is the baby's birth
Deceased
mother?
In hospital/care facility
Living elsewhere
Living here but ill
Other (specify)
Don't know
Declined
H. Were you the baby's main Yes
caregiver during his/her
No
illness?
I. Who was the baby's main
His/her mother
caregiver during the illness?
His/her father
Grandmother
Grandfather
Aunt/Uncle
Sibling
153
CODING
1
2
3
4
5
6
SKIP
TO
— • Ql
8
1
2
3
4
88
99
1
2
1
2
3
4
5
6
•
Q4
QUESTIONS AND
FILTERS
J. Is this person available to
speak with us either now or at
alatertime?
ANSWERS
CODING
SKIP
TO
Other relative (specify)
Non-relative caregiver
Don'tknow
Declined
Yes, now
Yes but only later
No
8
88
99
1
2
3
—•
~~>
Yes
No
1
2
— • Q4
* repeat i
L
end
interview
K. (To new respondent): Were
you the baby's main caregiver
during his/her illness?
L. Set up alternative date/
time to speak with primary
caregiver if not available
immediately.
Date
/
/
Time:
Ilia. QUESTIONS ABOUT THE BABY'S FATHER
Only ask these questions of mothers - not primary caregivers
QUESTIONS AND
FILTERS
Ql. Is the father of the baby
living with you now?
Q2. Was he living with you at
the time of the baby's death?
Q3. What is the father's work
activity (job)? (specify)
ANSWERS
CODING
Yes
No
Declined to answer
1
2
9
Yes
No
Declined to answer
1
2
9
SKIP
TO
l_
Don't know/Declined to answer
99__|
Q6
Confirm age:
years
Hlb. GENERAL CHARACTERISTICS OF THE CAREGIVER
Q4.
Caregiver's date of birth (dd/mm/yyyy):
Q5.
Last standard passed:
154
/
/
IV. DISTANCE TO SERVICES
Ask of all respondents
Q6. How do you usually get to the nearest clinic?
D 1 Walk
• 2 Taxi/bus
u 3Q w n vehide
(Tick one response only)
D 4 Other (specify)
D 9 Don't know/Declined
Q7. How long does it take you to get to the nearest clinic?
• Don't know/Declined
Q8. How much does it cost to get to the nearest clinic? R
• Don't know/Declined
• 1 Walk
• 2 Taxi/bus
u 3Qwn vehide
• 4 Other (specify)
• 9 Don't know/Declined
Q9. How do you usually get to the nearest hospital?
(Tick one response only)
Q10. How long does it take you to get to the nearest hospital?
• Don't know/Declined
Ql 1. How much does it cost to get to the nearest hospital? R
D Don't know/Declined
V. BACKGROUND INFORMATION ON INFANT
Q12. Age of child at time of death (in months or weeks): Months:
Weeks:
(**Ifbaby was born in a facility and died after birth without leaving hospital, please
switch to the Newborn Supplement instrument now**)
Q13. Child's address at time of death:
Q14. First (given) name of child:
Q15. Sex of child
D 1 Male D 2 Female
Q16. Do you have a birth certificate for the baby?
D 1 Yes
D 2 No
Q17. Did you apply for a child support grant for the baby?
• 1 Yes D 2 No (If no, skip to Q20)
Q18. If yes to Q17: Did you receive a child support grant for the baby?
• 1 Yes D 2 No (If no, skip to Q20)
155
Q19. If yes to Q18: How long did it take you to receive the grant after you applied for it?
Q20.Where did the baby die?
• 1 Inpatient (hospital)
• 2 ER/Outpatient (hospital)
• 3 DOA (hospital)
D 4 Home
• 5 Clinic
• 6 Other (specify)
Q21. Specify name of facility (if appropriate)
Q22a. Do you have a death certificate for the baby?
D 1 Yes (ask to see it and skip to Q23)
0 2 No (continue with Q22b)
Q22b. If no to Q22a: Do you know what the cause of death was?
D 1 Yes (specify)
D2No
• 9 Don't know/Declined
INFORMATION FROM DEATH CERTIFICATE
Q23. Date of infant's death (dd/mm/yyyy): DOD:
/
/
Q24.Cause(s) of death noted on death certificate
Q25. Do you have a Road to Health Card for the baby?
• 1 Yes (ask to see it and continue to Q25a)
• 2 No (skip to Q26)
INFORMATION FROM ROAD TO HEALTH CARD
(mark a check in the box next to each if child received immunisation)
Q25a. • BCG
Q25b. • Polio O
Q25c. D Polio 1
Q25d. • DPT-HepB-Hib 1
Q25e. • Polio 2
Q25f.
Q25g.
Q25h.
Q25i.
Q25j.
• DPT-HepB-Hib 2
• Polio 3
• DPT-HepB-Hib 3
D Measles
• Vitamin A
Q25k. Child's last recorded weight on RTH Card:
156
Q251. Date of child's last recorded weight on RTH Card (or age of child when weighed):
Date:
/
/_
Age:
months or
weeks
Q25m. Add all total # visits reflected on RTH Card (including for immunizations):
visits
Q25n. Please copy down any other notes written on Road to Health Card below and
continue on the back of this page if necessary.
(continue on back of page if necessary)
157
VI. MOTHER'S DESCRIPTION OF HER PREGNANCY, LABOUR AND
DELIVERY (Do not ask of primary caregivers - only ask of mothers)
Q26. Please first tell me about your pregnancy. Prompts: How did you feel during
your pregnancy? How would you say your health was? (Probe on both mental and
physical health. If respondent describes any mental or physical health problems, ask:
Can you tell me more about that?) How would you say you felt emotionally? (If
respondent describes any negative emotions, again ask for more information about those
feelings.) Overall, would you say this was an easy or difficult pregnancy? In what ways
was it easy/difficult? Was there anything else important that happened during your
pregnancy that you can share (for example, with your relationship, your family, money,
etc.)?
(continue on back of page if necessary)
158
SUB-QUESTIONS ON CARE DURING PREGNANCY
(Do not ask ofprimary caregivers - only ask of mothers)
I would like to ask some specific questions regarding how you felt about the care you
received during your pregnancy. Interviewer: These questions are to be used only if the
information has not already been provided by the respondent. Do not ask any questions
that duplicate information already obtained. Also, do not read the listed answers unless
the respondent needs clarification.
QUESTIONS AND
FILTERS
Q27. Did you receive
any antenatal care
during the pregnancy?
Q28. Where did you go
to receive antenatal
care? (specify facility or
type of provider)
Q29. How many times
did you receive antenatal
care during the
pregnancy?
Q30. Did any of the
following make it
difficult for you to
receive the care you
wanted during your
pregnancy?
(Tick all that apply)
Q31. How long did you
usually have to wait
when you arrived for
your antenatal visits?
(specify)
Q32. How long did the
doctor or nurse usually
spend with you during
your antenatal visits?
Q33. What advice, if
any, were you given on
how to take care of
yourself during
pregnancy?
ANSWERS
CODING
Yes
No
Don't know
Declined
1
z
88
99
Don't know
Declined
88
99
Specify number of times
Don't know
Declined
88
99
I had no one to take care of my
other children
I did not feel well enough to go
for care
I did not know where to go...
I had no problems
Other (specify)
Don't know
Declined
88
99
Don't know
Declined
88
99
Don't know
Declined
88
99
Don't know
Declined
88
99
159
1
2
3
4
SKIP TO
~*Q36
QUESTIONS AND
FILTERS
Q34. Were the hours the
office or clinic was open
convenient for you?
Q35. Please tell me how
you felt about how the
staff treated you while
you were receiving care.
ANSWERS
CODING
Don't know
Declined
88
99
Don't know
Declined
88
99
SKIP TO
Q36. Is there anything else you would like to tell me about the pregnancy before we talk
about labour and delivery? (Record additional comments on back of page if necessary)
Q37. Do not ask ofprimary caregivers - only ask of mothers: Now please tell me about
your labour and delivery experience with the baby. Prompts: Take me through the
experience starting from when you first realised you were in labour. What happened
next? Ask whether there is anything else after the respondent finishes or ask for
clarification when it is needed (e.g., "What do you mean when you say...?"). Keep
prompting until the respondent says there was nothing else. While recording, underline
any unfamiliar terms. After the mother/care giver stops talking, ask: Is there anything
else?
(continue on back of page if necessary)
160
SUBQUESTIONS ON LABOUR AND DELIVERY CARE:
(Do not ask of primary caregivers - only ask of mothers)
I just want to make sure I have all the information I need about the care you received
during labour and delivery so I have a few follow up questions. Interviewer: Do not ask
any questions that duplicate information already provided by the respondent. Also, do not
read the listed answers unless the respondent needs clarification.
ANSWERS
CODING SKIP TO
QUESTIONS AND
FILTERS
Q38. How many weeks
Number of months or weeks
M:
pregnant were you when
W:
(specifv)
you delivered your baby? Don't know
88
Declined
99
Car
1
Q39. How did you go to
Bus
2
the facility/provider
3
where you delivered your Train
4
Ambulance
baby?
5
Taxi
6
On foot
- • Q41
7
Provider came to home
-* Q43
8
Delivered unattended at home..
- • Q43
Other (specify)
Don't know
88
Declined
99
1
Q40. How difficult was it Very difficult
2
to find/get the transport? Somewhat difficult
Not a problem
3
Don't know
88
Declined
99
1
Q41. How much time did Between 5-10 minutes
it take to go there?
Less than 30 minutes
2
Less than 1 hour
3
Approximately 1 hour
4
Between 1-2 hours
5
More than 2 hours
6
Don't know
88
Declined
99
1
Q42. How long after you Immediately
2
Less
than
30
minutes
arrived at the facility/care
Less than 1 hour
3
provider in labour were
4
Approximately
1
hour
you examined? (In other
5
words, how long did you Between 1-2 hours
6
More than 2 hours
have to wait?)
Don't know
88
Declined
99
161
QUESTIONS AND
FILTERS
Q43. When you delivered
your baby, did it then
have to go into a special
intensive care unit or
premature nursery at the
hospital?
Q44. Specify reason that
baby was put into
intensive care or
premature nursery.
Q45. How long did the
baby have to stay in
intensive care or the
premature nursery?
Q46. How would you rate
the quality of care at this
facility/provider where
you delivered?
CODING
ANSWERS
1
Yes (specify reason in Q44)
No
Don't know
Declined
QQ
Specify amount of time
Don't know
Declined
88
99
Good
Fair
Poor
Don't know
Declined
1
2
3
88
99
Q47. Can you be specific
what was "good," "fair"
or "poor" about the care
the baby received?
Don't know
Declined
Q48. Was the baby
Yes (specify where)
transferred to another
No
hospital or facility after it Don't know
was born?
Declined
Q49. Why was the baby
Lacked necessary equipment/
transferred?
service child needed
To get better care
Because baby was still sick
No doctor was available
Other (specify)
Don't know
Declined
Q50. How would you rate Good
the quality of care at this Fair
second facility/provider? Poor
Don' t know
Declined
Q51. Can you be specific
Don't know
what was "good," "fair"
or "poor" about the care
Declined
the baby received?
162
SKIP TO
z
88
-•Q46
— -•
^
Q48
Q48
88
99
2
88
99
- -> Q52
! - • Q52
1
2
3
4
88
99
1
2
3
88
99
88
99
- - • Q52
- • Q52
Q52. Interviewer: Include any additional notes about the labour and delivery in the space
provided below.
(continue on back ofpage if necessary).
VII. MOTHER'S OR CAREGIVER'S DESCRIPTION OF CHILD'S ILLNESS
Q53. Now please tell me in your own words about the baby's illness that led to
death.
Interviewer: Ask the mother/caregiver to take you through the entire experience starting
from when she first realised the baby was not well. Continue asking, "Is there anything
else?" after the respondent finishes and also be sure to ask for clarification when needed
(e.g., "What do you mean when you say...?"). Keep prompting until the respondent says
there was nothing else. While recording, underline any unfamiliar terms. After the
mother/caregiver stops talking, ask: Is there anything else?
Additional probe (if not mentioned spontaneously): Traditional healers are important in
this community as they are sometimes easier to get to than the clinic and they can assist
with both physical and spiritual problems. In general, what have your experiences been
with traditional healers? Did you ever consult a traditional healer when your baby was
sick?
(Continue on back of page if necessary)
163
Take a moment to tick all items mentioned spontaneously in the open history
questionnaire. Then probe for symptoms and/or diagnoses in bold/italics not mentioned:
J. Diarrhoea (frequent loose or liquid stools)
_2. Blood in the stools
_3. Dehydration
_4. Sunken fontanelle
_5. Vomiting
_6. Fever
_7. Ear infection (otitis)
_27. Kwashiorkor (Kwash)
28. Marasmus
_29. Swollen legs or feet (oedema)
_30. Hair turned red/yellow colour
_31. Did not grow or gain/lost weight
weight
_32. Birth malformation
_33. Very small/thin at birth, early
_8. Pneumonia
_9. Cough
_10. Difficult breathing
_ 34. Anaemia
_ 11. Fast breathing
_.35. Pale skin or palms
_12. Indrawing of chest
__36. White nails
_13. Noisy breathing (stridor, grunting, wheezing)
_14. Nostrils flaring with breathing
_ 37. Thrush
38. HIV or AIDS
_39. Swelling in the armpits
_15. Measles
_40. Swelling in the groin
_16. Skin rash with bumps containing pus
.41. Swelling in the abdomen
_17. Skin rash (no bumps containing pus)
_18. Cracked/peeling skin
_42. Yellow eyes or yellow skin
_19. Redness or drainage from the umbilical
(jaundice)
cord stump
_20. Tetanus
_21. Unconscious, unresponsive (coma)
_22. Fits (spasms, convulsions)
_23. Unable to suck/feed
_24. Bulging fontanelle
_25. Stiff neck
_26. Slow development (milestones)
43. Accident/Injury
_ 4 4 . SIDS/cot death
45. Abscess (specify where)
46. Other terms (specify)
47. Other terms (specify)
164
SUBQUESTIONS ON CARE-SEEKING DURING INFANT'S LAST ILLNESS: I
would now like to make sure that I have all the information we need about your baby's
last illness by asking some follow up questions. Interviewer: These questions are to be
used only to fill in specific information that has not already been provided by the
respondent. Do not ask any questions that duplicate information already obtained. Also,
do not read the listed answers unless the respondent needs clarification.
QUESTIONS AND
FILTERS
Q54. During the baby's
last illness, after how
much time from the
beginning of symptoms
did you recognise that
he/she was having a
problem or illness?
Q55. What treatment did
you give at home?
(In Q56 below, specify
exactly what was given)
ANSWERS
CODING
Immediately
Hours (specify)
Days (specify)
Months (specify)
Died immediately
Don't know
Declined
Oral rehydration solution
Medicine
Herbs
Nothing
Other
Don't know
Declined
Q56. What exactly did
you give the child?
SKIP
TO
0
\
4
88
99
-k.
CiQQ
-w
C\f\C\
^ v^yo
1
2
3
A
5
oo
99
^ vjoU
~* Q60
Q57. How often did you
give it?
Q58. For how long did
you give this home
treatment?
Q59. Was there anyone
who helped you or
advised you on what to
do for the child at home?
Q60. Were you aware of
any danger signs that
indicated the child should
go to the clinic or
hospital?
Yes (specify who)
No
Don't know
Declined
Yes
No
Don't know
Declined
165
2
88
99
1
k. D 6 °
oo
99
*• l^Oz
~* Q62
QUESTIONS AND
ANSWERS
FILTERS
Q61. If yes to Q60 above,
ask the mother to specify
what these signs were
(e.g. floppy, losing
consciousness, continual
vomiting, coughing, etc.).
Q62. Once a problem was Yes
recognised, was the baby No
taken for treatment?
Don't know
Declined
No treatment necessary
Q63. Why was the baby
Not customary
not taken for treatment?
Cost too much
Lack of funds
Health facility too far
Any other reason?
Transportation not easy
No one available to
accompany
Good quality care not
available
Mistreatment by health staff...
Family did not allow
Home care is better
No time to go
Did not know where to go...
Died on the way to treatment..
Did not realize seriousness
Other (specify in Q64)
Don't know
Declined
CODING
i
i
•Q65
2
88
->• Q98
99
•Q98
A
B
C
D
E
F
G
-»Q69
H
I
J
K
L
M
N
O
P
88
99
Q64. Please specify
"other" reason for not
seeking care.
- • Q98
~*Q69
-•Q69
--•Q69
-•Q69
166
u
ON
ON
Immediately
Hours (specify)
Days (specify)
Months (specify)
Don't know
Declined
00
00
Q65. How long after you
recognised that there was
a problem did you or
your family take the baby
for treatment?
SKIP
TO
Q68
QUESTIONS AND
FILTERS
ANSWERS
Q66. Why was the baby
not taken for treatment
sooner?
Not customary
Facility/provider too far
Did not realize seriousness
Cost too much
Lack of funds
No one to look after
household
Transportation not easy
Safety concerns
Other (specify in Q67)
Don't know
Declined
Any other reason?
CODING
1
2
3
4
5
6
7
8
9
88
99
SKIP
TO
~*Q68
> Q68
•*. 0 6 8
Q67. Please specify
"other" reason for not
seeking care
immediately.
Q68. Which type of
provider or facility did
you first take the baby to
for treatment during the
last illness?
Additional probe (if not
mentioned
spontaneously):
Traditional healers are
important in this
community as they are
sometimes easier to get to
than the clinic and also
they assist with spiritual
- not just medical problems. Did you ever
consult a traditional
healer?
Public Hospital
Primary Health Care Clinic....
Mobile/Outreach Site
NGO Clinic
Private Hospital
Private Clinic
General Practitioner
Community Health Worker....
Traditional Healer
Spiritual/Religious Leader....
Relatives/Friends
Other (specify)
Don't know
Declined
167
A
B
C
D
E
F
G
H
I
J
K
88
on
yy
—*Q70
QUESTIONS AND
FILTERS
Q69. Who was involved
in making the decision
that the baby should not
go to a facility or
provider to receive
treatment? (check all that
apply)
Q70. Why did you
choose that
facility/provider?
Q71. Who was involved
in making the decision
that the baby should
receive treatment? (check
all that apply)
Q72. How did you take
the baby to the
facility/provider?
CODING
ANSWERS
Child's mother/caregiver
Child's father/Mother's
partner
Grandfather/Grandmother
Brother/Sister
Other family members
Friends/Neighbours
Field worker/CHW
No one
Other (specify)
Don't know
Declined
Closest to home
Good care provided there
Familiar with
facility/provider
Other (specify)
Don't know
Declined
Child's mother/caregiver
Child's father/Mother's
partner
Grandfather/Grandmother
Brother/Sister
Other family members
Friends/Neighbours
Field worker/CHW
No one
Other (specify)
Don't know
Declined
Car
Bus
Train
Ambulance
On foot
Provider came to home
Other (specify)
Don't know
Declined
168
SKIP
TO
1
i
2
3
4
5
6
7
8
->Q98
88
99
1
2
3
88
99
1
2
3
4
5
6
7
8
88
99
1
2
3
4
5
6
-> Q74
7
~+ y / o
88
99
- • Q76
~*Q76
QUESTIONS AND
FILTERS
Q73. How difficult was it
to find/get the transport?
Q74. How much time did
it take to go there?
Q75. How long after the
baby first arrived at the
facility/care provider was
he/she examined? (In
other words, how long
did you have to wait?)
Q76. What type of
provider first treated the
baby?
ANSWERS
CODING
Very difficult
Somewhat difficult
Not a problem
Don't know
Declined
Between 5-10 minutes
Less than 1 hour
Approximately 1 hour
Between 1-2 hours
More than 2 hours
Don't know
Declined
Immediately
Less than 30 minutes
Less than 1 hour
Approximately 1 hour
Between 1-2 hours
More than 2 hours
Don't know
Declined
Qualified doctor
Nurse/Midwife
Health Assistant
Community Health Worker.
Traditional Healer/
Practitioner
Spiritual/Religious Leader....
Other (specify)
Don't know
Declined
SKIP
TO
1
2
3
88
99
1
2
3
4
5
6
88
99
1
2
3
4
5
6
88
99
1
2
3
4
5
6
88
99
Q77. What treatment was
given to the baby?
Anything else?
Q78. Was the baby
admitted to the facility?
Don't know
Declined
Yes
No
Declined
88
99
1
2
99
169
—-•
Q83
QUESTIONS AND
FILTERS
Q79. Did the provider ask
you to do something at
home for the baby's
treatment?
ANSWERS
CODING
Yes
No
Don't know
Declined
1
2
88
99
SKIP
TO
-•Q83
>
Q80. What did the
provider ask you to do at
home?
Q81. Were you able to do Yes, everything
all the things the provider Partially yes, partially no...
asked you to do?
No
Don't know
Declined
Q82. (Ifpartially
YES/NO, or NO): Why
could you not do them?
Don't know
Declined
Q83. Did the baby's
Improved
condition improve after
No change
treatment or did it stay
Worsened
the same or worsen?
Don't know
Declined
Q84. How long after
Hours (specify)
treatment did the baby
Days (specify)
die?
Months (specify)
Don't know
Declined
Q85. How would you rate Good
the quality of care the
Fair
baby received at this first Poor
facility/provider!
Don't know
Declined
Q86. Can you be specific
what was "good," "fair"
or "poor" about the care
the baby received?
Don't know
Declined
170
1
2
3
— •• Q83
05
"*" Q83
* Q83
99
88
99
1
2
3
88
99
88
99
1
2
3
88
99
88
99
• Q87
— > Q87
QUESTIONS AND
FILTERS
Q87. Did the facility/
provider refer the baby to
another facility/provider
for care?
ANSWERS
CODING
Yes
No
Don't know
Declined
1
2
88
99
Q88. Did you decide on
your own to take the baby
to another
facility/provider for care?
Q89. Where was the baby
referred (or where did
you take the baby next)?
Yes
No
Don't know
Declined
Home
Public Hospital
Primary Health Care Clinic.
Outreach Site
NGO Clinic
Private Hospital
Private Clinic
General Practitioner
Community Health Worker
Traditional Healer
Spiritual/Religious Leader..
Other (specify)
Don't know
Declined
Lacked necessary equipment/
service child needed
To get better care
Because baby was still sick....
No doctor was available
Other (specify)
Don't know
Declined
Immediately
Hours (specify)
Days (specify)
Months (specify)
Did not go
Don't know
Declined
1
2
88
99
A
B
C
D
E
F
G
H
I
J
K
Q90. What was the
reason given for the
referral (or why did you
decide to take the baby to
another
facility/provider)!
Q91. How long after the
baby was seen at the first
facility/provider was it
sent/taken to the second
place?
171
SKIP
TO
* Q89
—
-•Q98
>Q98
—
88
99
1
2
3
4
88
99
I
2
3
4
5
88
99
-•Q94
'
*" Q94
* Q94
QUESTIONS AND
FILTERS
Q92. Why was the baby
not taken there for
treatment?
Any other reason?
ANSWERS
CODING
No treatment necessary
Not customary
Cost too much
Lack of funds
Health facility too far
Transportation not easy
No one to accompany her , ,
Quality care not available
Mistreatment by health staff..
Family did not allow
Home care is better
Did not know how to go
there
No time to go
Did not know where to go...
Died on the way to treatment.
Did not realize seriousness...
Chose other treatment (specify
inQ93)
Other (specify in Q93)
Don't know
Declined
A
B
C
D
E
F
G
H
I
J
K
SKIP
TO
—>Q98
L
M
N
O
P
Q
R
88
on
yy
- • Q98
^
hi
AOQ
Qyo
Q93. Specify other
treatment or other reason
indicated above in Q92.
Don't know
Declined
Q94. Did the baby
receive treatment at the
second facility/provider
before his/her death?
88
99
Yes
No
Child died on the way
Don't know
Declined
Q95. How would you rate Good
the quality of care the
Fair
baby received at this
Poor
second facility/provider!
Don't know
Declined
1
L
3
88
99
1
2
3
88
yy
172
—>Q98
- • V0 ^9 7'
~+~ (£31
QUESTIONS AND
FILTERS
Q96. Can you be specific
what was "good," "fair"
or "poor" about the care
the baby received?
Q97. After this second
facility/provider, was the
baby referred to a third
place (or did you decide
on your own to take the
baby somewhere else for
care)?
Q98. Aside from during
the last illness, did the
baby ever go for wellbaby care or treatment for
an illness at another
time?
CODING
ANSWERS
Don't know
Declined
Yes, baby was referred
Yes, I made the decision
No
Don't know
Declined
SKIP
TO
88
99
^IfYES,
continue
on
referral
suppleme
nt sheets,
otherwise
continue
here
1
2
3
88
99
1
Yes
No
Don't Know
Declined
z
88
—•Q135
QQ
VIII. DESCRIPTION AND PERCEPTION OF INFANT'S HEALTH CARE
Now we would like to ask you a few questions about the baby's health care in general,
starting with the first place he/she received care after birth/discharge from the birth
facility.
QUESTIONS AND
FILTERS
Q99. When did the baby
FIRST receive health
care (either well-child
care or for an illness)
after he/she was
born/discharged from
birth facility?
ANSWERS
CODING
Age of child (specify months
or weeks)
or
Date of visit
Don't know
Declined
M:
W:
173
/
/
88
99
SKIP
TO
QUESTIONS AND
FILTERS
Q100. From where did
the baby first receive this
care?
Home
Public Hospital
Primary Health Care Clinic.
Outreach Site
NGO Clinic
Private Hospital
Private Clinic
General Practitioner
Community Health Worker.
Traditional Healer
Spiritual/Religious Leader...
Other (specify)
Don't know
Declined
By bringing health care
provider to home
By taking advice from health
care provider
Other (specify in Q102)
Don't know
Declined
A
B
C
D
E
F
G
H
I
J
K
-•Q103
00 ON
00 ON
Q101. How was the baby
treated at home?
SKIP
TO
CODING
ANSWERS
1
"•Q103
2
3
bo
99
"^0103
"** Q1UJ
~**Q103
Q102. Please specify the
"other" way the baby was
treated at home.
Q103. Did the baby
receive any (additional)
treatments/ medicines?
Yes (specify in Q104)
No
Don't know
Declined
1
2
88
99
Yes
No
Don't know
Declined
1
2
88
99
-•Q105
'
Q104. Specify
treatments/ medicines
from Q103.
Q105. At any other time
did you take the baby for
well-child care or for care
to treat an illness (aside
from the baby's last
illness which we've
already talked about)?
174
->Q135
'
QUESTIONS AND
FILTERS
Q106. Where did you
take the baby (either
well-child care or for an
illness)?
Q107. What symptoms
made you/that person
decide to get treatment
for the baby?
Q108. Why did you
choose that
facility/provider?
Q109. How did you take
the baby to the
facility/pro viderl
QUO. How difficult was
it to find/get the
transport?
CODING
ANSWERS
Public Hospital
Primary Health Care Clinic.
Outreach Site
NGO Clinic
Private Hospital
Private Clinic
General Practitioner
Community Health Worker.
Traditional Healer
Spiritual/Religious Leader...
Other (specify)
Don't know
Declined
Don't know
Declined to answer
Closest to home
Good care provided there
Familiar with
facility/provider
Other (specify)
Don't know
Declined
Car
Bus
Train
Ambulance
Taxi
On foot
Provider came to home
Other (specify)
Don't know
Declined
Very difficult
Somewhat difficult
Not a problem
Don't know
Declined
175
SKIP
TO
A
B
C
D
E
F
G
H
I
J
88
99
88
99
1
2
3
88
99
1
2
3
4
5
6
7
88
99
1
2
3
88
99
> QUI
>Q113
QUESTIONS AND
FILTERS
Q U I . How much time
did it take to go there?
Ql 12. How long after the
baby first arrived at the
facility/care provider was
he/she examined?
Ql 13. What type of
provider first treated the
baby?
ANSWERS
CODING
Between 5-10 minutes
Less than 30 minutes
Less than 1 hour
Approximately 1 hour
Between 1-2 hours
More than 2 hours
Don't know
Declined
Immediately
Less than 30 minutes
Less than 1 hour
Approximately 1 hour
Between 1-2 hours
More than 2 hours
Don't know
Declined
Qualified doctor
Nurse/Midwife
Health Assistant
Community Health Worker.
Traditional Healer/
Practitioner
Spiritual/Religious Leader....
Other (specify)
Don't know
Declined
SKIP
TO
1
2
3
4
5
6
88
99
1
2
3
4
5
6
88
99
1
2
3
4
5
6
88
99
Ql 14. What treatment
was given to the baby?
Were there any other
treatments?
Ql 15. Was the baby
admitted?
Ql 16. Did the provider
ask you to do something
at home for the baby's
treatment?
Don't know
Declined
Yes
No
Declined
Yes
No
Don't know
Declined
88
99
1
2
99
1
2
88
99
Ql 17. What did the
provider ask you to do at
home?
176
— -•Q120
-•Q120
QUESTIONS AND
FILTERS
Ql 18. Did you do all the
things the provider asked
you to do?
ANSWERS
CODING
Yes, everything
Partially yes, partially no...
No
Don't know
Declined
1
2
3
88
99
Don't know
Declined
Improved
No change
Worsened
Don't know
Declined
Hours (specify)
Days (specify)
Months (specify)
Don't know
Declined
Good
Fair
Poor
N/A (treated at home)
Don't know
Declined
88
99
1
2
3
88
99
Don't know
Declined
88
99
SKIP
TO
—- ^ Q 1 2 0
— •> Q120
— ->Q120
Ql 19. (Ifpartially
YES/NO, or NO): Why
could you not do them?
Q120. Did the baby's
condition improve after
treatment or did it stay
the same or worsen?
Q121. How long after
treatment did the baby
die?
Q122. How would you
rate the quality of care
the baby received at this
first facility/provider!
Q123. Can you be
specific what was
"good," "fair" or "poor"
about the care the baby
received?
Q124. Did the facility/
provider refer the baby to
another facility/provider
for care?
Q125. Even though the
baby was not referred,
did you decide on your
own to take the baby to
another facility/provider
for care?
88
99
1
2
3
4
88
99
Yes
No
Don't know
Declined
1
2
88
99
Yes
No
Don't know
Declined
1
2
88
99
177
- -•Q134
— -•Q124
- -•Q124
*• Q126
-•Q134
—
"*Q134
QUESTIONS AND
FILTERS
Q126. Where was the
baby referred (or where
did you take the baby
next)!
Q127. What was the
reason given for the
referral (or why did you
decide to take the baby to
another
facility/provider)?
Q128. How long after the
baby was seen at the first
facility/provider was the
baby sent/taken to the
second place?
ANSWERS
SKIP
TO
CODING
Public Hospital
Primary Health Care Clinic.
Outreach Site
NGO Clinic
Private Hospital
Private Clinic
General Practitioner
Community Health Worker
Traditional Healer
Spiritual/Religious Leader..
Other (specify)
Don't know
Declined
Lacked necessary equipment/
service child needed
To get better care
No doctor was available
Other (specify)
Don't know
Declined
Immediately
Hours (specify)
Days (specify)
Months (specify)
Did not go
Don't know
Declined
178
A
B
C
D
E
F
G
H
I
J
88
99
1
2
3
88
99
1
2
3
4
5
88
99
-•Q131
'
*
•
Q131
Q131
QUESTIONS AND
FILTERS
Q129. Why was the baby
not taken there for
treatment?
Any other reason?
Q130. Specify other
treatment or other reason
indicated above in Q129.
Q131. Did the baby
receive treatment at the
second facility/provider
before his/her death?
Q132. How would you
rate the quality of care
the baby received at this
second facility/provider?
SKIP
TO
CODING
ANSWERS
No treatment necessary
Not customary
Cost too much
Lack of funds
Health facility too far
Transportation not easy
No one available to
accompany
Good quality care not
available
Mistreatment by health staffFamily did not allow
Home care is better
Did not know how to go
there
No time to go
Did not know where to go...
Died on the way to treatment.
Did not realize seriousness...
Chose other treatment (specify
inQ130)
Other (specify in Q130)
Don't know
Declined
Don't know
Declined
A
B
C
D
E
F
G
_£134
H
I
J
K
L
M
N
O
P
—
Q
R
88
99
— +-Q134
"••Q134
88
99
Yes
No
Child died on the way
Don't know
Declined
Good
Fair
Poor
Don't know
Declined
179
1
2
3
88
99
1
2
3
bo
99
—•Q134
—*Q134
• Q1J4
** Q134
QUESTIONS AND
FILTERS
Q133. Can you be
specific what was
"good," "fair" or "poor"
about the care the baby
received?
ANSWERS
CODING
Don't know
Declined
88
99
SKIP
TO
Q134. Aside from those times we've already talked about, how many other times did the
baby go for health care? Prompts: Where? When was this? What type of provider was
seen? What was the treatment? Was the baby referred? If so, why and to where? Did the
baby's health get better, stay the same, or get worse as a result of this treatment?
(continue writing on back of page if necessary)
180
IX. SOCIAL SUPPORTS
This is the last part of the interview. We would now like to ask you a few questions about
any support you received while the baby was alive and also after (he/she) died.
Husband/baby's father
Respondent's mother/father....
Respondent's sibling
Other relative
Spiritual/Religious leader
Friend
Other children in HH
Other (specify)
(check all that apply)
No one
Don't know
Declined
Yes (specify in Q137)
Q136. Since the loss of
the baby, have you been
No
able to receive counseling Don't know
or help from anyone? If
Declined
so, whom?
Husband/baby's father
Q137. Specify who
Respondent's mother/father....
provided counseling or
help in Q136.
Respondent's sibling
Other relative
Spiritual/Religious leader
Friend
Other children in HH
Other (specify)
Don't know
Declined
Q138. Do you belong to a Yes
community organization? No
Declined
Q135. When you were
taking care of the baby,
who could you talk to if
you just needed someone
to talk to about what was
on your mind?
Q139. What does the
organization do?
181
A
B
C
D
E
F
G
I
88
99
1
2 —
88
->Q138
99
A
B
C
D
E
F
G
88
99
1
2
QQ
yy
-•
Q140
X. CLOSING THE INTERVIEW
Q140. Thinking back on this entire experience, what do you think would have made
things better or easier for you? Is there anything you would try to do differently the next
time?
Q141. Please tell us any ideas you have for how health care facilities and providers can
better serve families in (name of area) with sick infants.
Q142. Is there anything else about the loss of the baby that you would like to share with
us?
(continue writing on back of page if necessary)
Q143.0ur interview is now almost over but we just have two final questions. We are
very interested in whether or not you feel it was a positive experience to talk to us today
about your loss. For example, did you feel comfortable sharing your thoughts today? Do
you think you will be able to help other families by sharing your story? Any comments or
criticisms you have that might help us to make our study better would be very helpful.
(Continue on back if necessary)
182
Q144. And finally, we have been talking with other mothers and families who have lost
babies here in (name of area) and some of them have expressed an interest in talking
with others who have had the same experience. If you think that connecting with these
family members would be helpful to you, we would be happy to give you some contacts
and to give them your contact information. Would you like us to do that? (If respondent
says no, reiterate that you will not_ pass on any information about her to anyone else).
• 1 Yes, please give them my contact information
D 2 Yes, please give me any contact information you have
D 3 No I do not wish to talk with anyone else
Thank you so much for taking the time to speak with us today. Your comments are very
valuable to us and will help us better understand the problems faced by families with sick
infants. We will use your comments to inform health workers how they can better meet
the needs of families in (name of area). Please be assured that your comments will be
kept anonymous. Do you have any additional questions you would like to ask about the
study we are conducting? (Answer any questions the respondent asks as best as you are
able.)
Thank you again. We are very sorry for your loss and we sincerely appreciate your time.
XI. POST-INTERVIEW ASSESSMENT
QUESTIONS AND
FILTERS
ANSWERS
CODING
PPQ1. Was another
individual present or
within hearing range
during the interview?
Yes
No
Not certain
1
2
3
PPQ2. Other interviewer comments or observations (about the home, the family, the way
the interview went, non-verbal interactions, please note whether the house was a formal
or informal structure):
(Continue writing on back of page if necessary)
183
APPENDIX C: CAREGIVER INSTRUMENT NEWBORN SUPPLEMENT
****Use this version only if child never left the hospital ****
I. INTRODUCTORY DATA
F. Participant code:
G. Interviewer code:
I
H. Mother's initials:
Initials:
I. Date of infant's birth (dd/mm/yyyy):
DOB:
J. Date of interview (dd/mm/yyyy):
/____/
/
/
II. CHOOSING THE CORRECT RESPONDENT
QUESTIONS AND
FILTERS
F. What is your
relationship to the baby?
If more than one person
is present for interview,
check all that apply
G. Where is the baby's
birth mother?
H. Were you the baby's
main caregiver during
his/her illness?
ANSWERS
Mother
Father
Grandmother
Grandfather
Aunt/Uncle
Sibling
Other relative (specify)
Non-relative caregiver
Deceased
In hospital/care facility
Living elsewhere
Living here but ill
Other (specify)
Don't know
Declined
Yes
No
184
CODING
SKIP TO
1
2
3
4
5
6
—•
Ql
•
Q4
8
1
2
3
4
88
99
1
2
CODINGr
QUESTIONS AND
FILTERS
ANSWERS
I. Who was the baby's
main caregiver during
the illness?
His/her mother
His/her father
Grandmother
Grandfather
Aunt/Uncle
Sibling
Other relative (specify)
Non-relative caregiver
Don't know
Declined
Yes, now
Yes but only later
No
8
88
99
1
2
3
Yes
No
1
2
J. Is this person
available to speak with
us either now or at a
later time?
K. (To new respondent):
Were you the baby's
main caregiver during
his/her illness?
L. Set up alternative
date/ time to speak with
primary caregiver if not
available immediately.
Date
/
SKIP TO
1
2
3
4
5
6
— • end interview
->
Q4
—•
repeat I
/
Time:
Ilia. QUESTIONS ABOUT THE BABY'S FATHER
Only ask these questions of mothers - not primary caregivers
QUESTIONS AND
FILTERS
Ql. Is the father of the
baby living with you
now?
Q2. Was he living with
you at the time of the
baby's death?
Q3. What is the father's
work activity (job)?
(specify)
CODING
ANSWERS
Yes
No
Declined to answer
1
2
9
Yes
No
Declined to answer
1
2
9
Don't know/Declined to answer
185
99
SKIP TO
- ] - • Q6
Illb. GENERAL CHARACTERISTICS OF THE CAREGIVER
Q4.
Caregiver's date of birth (dd/mm/yyyy):
Q5.
Last standard passed
/
/
Confirm age:
years
IV. DISTANCE TO SERVICES
Ask of all respondents
Q6. How do you usually get to the nearest clinic?
(Tick one response only)
D 1 Walk
• 2 Taxi/bus
Q 3 0 w n vehicle
D 4 Other (specify)
• 9 Don't know/Declined
Q7. How long does it take you to get to the nearest clinic?
• Don't know/Declined
Q8. How much does it cost to get to the nearest clinic? R
D Don't know/Declined
Q9. How do you usually get to the nearest hospital? D 1 Walk
D 2 Taxi/bus
(Tick one response only)
Q 3 0 w n ven}cie
D 4 Other (specify)
• 9 Don't know/Declined
Q10. How long does it take you to get to the nearest hospital?
• Don't know/Declined
Ql 1. How much does it cost to get to the nearest hospital? R
D Don't know/Declined
V. BACKGROUND INFORMATION ON INFANT
Q12. Age of child at time of death (in months or weeks):
Months:
Weeks:.
• 1 Male
• 2 Female
Q13. Child's address at time of death:
Q14. First (given) name of child:
Q15. Sex of child
186
Q16. Do you have a birth certificate for the baby?
Q17.Where did the baby die?
• 1 Yes
D 2 No
• 1 Inpatient (hospital)
• 2 ER/Outpatient (hospital)
D 3 DOA (hospital)
• 4 Home
• 5 Clinic
• 6 Other (specify)
Q18. Specify name of facility (if appropriate)
Q19a. Do you have a death certificate for the baby?
• 1 Yes
D 2 No
Interviewer: If respondent says she has a death certificate, ask to see it and use it to fill in
the information below, otherwise just ask the mother the infant's date of death.
Q19b. Date of infant's death (dd/mm/yyyy):
DOD:
/
/
Q19c.Cause(s) of death noted on death certificate
• Not applicable/no death certificate
II. MOTHER'S DESCRIPTION OF HER PREGNANCY, LABOUR AND
DELIVERY
Q20. Please first tell me about your pregnancy. Prompts: How did you feel during
your pregnancy? How would you say your health was? (Probe on both mental and
physical health. If respondent describes any mental or physical health problems, ask:
Can you tell me more about that?) How would you say you felt emotionally? (If
respondent describes any negative emotions, again ask for more information about those
feelings.) Overall, would you say this was an easy or difficult pregnancy? In what ways
was it easy/difficult! Was there anything else important that happened during your
pregnancy that you can share (for example, with your relationship, your family, money,
etc.)?
(Continue on back of page if necessary)
187
SUB-QUESTIONS ON CARE DURING PREGNANCY: I would like to ask some
specific follow up questions regarding how you felt about the care you received during
your pregnancy. Interviewer: These questions are to be used only to fill in specific
information that has not already been provided by the respondent. Do not ask any
questions that duplicate information already obtained. Also, do not read the listed
answers unless the respondent needs clarification.
QUESTIONS AND
FILTERS
Q20a. Did you receive any
antenatal care during the
pregnancy?
Q20b. Where did you go to
receive antenatal care?
(specify facility or type of
provider)
Q20c. How many times did
you receive antenatal care
during the pregnancy?
ANSWERS
CODING
Yes
No
Don't know.
Declined
1
288
99-
Don't know.
Declined
88
99
Specify number.
Don't know
Declined
88
99
Q20d. Did any of the
following make it difficult
for you to receive the care
you wanted during your
pregnancy?
I had no one to take care of
my other children
I did not feel well enough to
go for care
I did not know where to go...
No difficulties
(Tick all that apply) Other (specify)
Don't know
Declined
Q20e. Were you satisfied with the amount of time you had to
wait when you arrived for your antenatal visits?
SKIP
TO
H^Q20j
2
3
4
88
99
Yes/No
Q20f. Were you satisfied with the amount of time the doctor
or nurse spent with you during your antenatal visits?
Yes/No
Q20g. Were you satisfied with the advice you received on
how to take care of yourself during pregnancy?
Yes/No
Q20h. Were you satisfied with the hours the office or clinic
was open ?
Q20i. Were you satisfied with understanding and respect the
staff showed you as a person?
Yes/No
Yes/No
Q20j. Is there anything else you would like to tell me about the pregnancy before we talk
about labour and delivery?
(continue on back of page if necessary)
188
Q21. Now please tell me about your labour and delivery experience. Prompts: Walk
me through the experience starting from when you first realised you were in labour. What
happened next? Ask whether there is anything else after the respondent finishes or ask for
clarification when it is needed (e.g., "What do you mean when you say...?"). Keep
prompting until the respondent says there was nothing else. While recording, underline
any unfamiliar terms. After the mother/caregiver stops talking, ask: Is there anything
else?
(continue on back of page if necessary)
189
Q22. Now please tell me in your own words about the baby's illness that led to
death.
Interviewer: Ask the mother/caregiver to walk you through the experience starting from
when she first realised the baby was not well. Continue asking, "Is there anything else?"
after the respondent finishes and also be sure to ask for clarification when needed (e.g.,
"What do you mean when you say... ?"). Keep prompting until the respondent says there
was nothing else. While recording, underline any unfamiliar terms. After the
mother/caregiver stops talking, ask: Is there anything else?
Additional probe (if not mentioned spontaneously): Traditional healers are important in
this community as they are sometimes easier to get to than the clinic and also they assist
with spiritual - not just medical - problems. In general, what have your experiences been
with traditional healers? Did you ever consult a traditional healer when your baby was
sick?
(continue on back of page if necessary)
190
Take a moment to tick all items mentioned spontaneously in the open history
questionnaire on the baby's illness. Then probe for symptoms and/or diagnoses in
bold/italics not mentioned:
1. Diarrhoea (loose or liquid stools)
2. Blood in the stools
3. Dehydration
4. Sunken fontanelle
5. Vomiting
6. Fever
7. Infection
8. Pneumonia
_ 9 . Cough
10. Difficult breathing
11. Fast breathing
12. Indrawing of chest
13. Noisy breathing (stridor, grunting, wheezing)
14. Nostrils flaring with breathing
15. Skin rash with bumps containing pus
16. Skin rash (no bumps containing pus)
17. Cracked/peeling skin
18. Redness or drainage from the umbilical
cord stump
19. Tetanus
20. Unconscious, unresponsive (coma)
21. Fits (spasms, convulsions)
22. Unable to suck/feed
23. Bulging fontanelle
_ 2 4 . Stiff neck
25. Swollen legs or feet (oedema)
26. Did not grow/gain weight or lost weight
27. Birth malformation
28. Very small or very thin at birth, or early
29. Anaemia
30. Pale skin or palms
31. White nails
32. Thrush
_J3. HIV or AIDS
34. Swelling in the armpits
35. Swelling in the groin
36. Swelling in the abdomen
37. Yellow eyes or Yellow skin (jaundice)
38. Accident/Injury
191
SUBQUESTIONS ON LABOUR, DELIVERY CARE, AND THE BABY'S DEATH: I
just want to make sure I have all the information I need about your experience after the
baby was born so I have a few follow up questions. Interviewer: These questions are to
be used only to fill in specific information that has not already been provided by the
respondent. Do not ask any questions that duplicate information already obtained. Also,
do not read the listed answers unless the respondent needs clarification.
QUESTIONS
AND FILTERS
Q22a. How many
weeks pregnant
were you when you
delivered your
baby?
Q22b. How did you
go to the
facility/provider
where you delivered
your baby?
Q22c. How difficult
was it to find/get
the transport?
Q22d. How much
time did it take to
go there?
ANSWERS
CODING
Number of weeks (specify)
Don't know
Declined
Car
Bus
Train
Ambulance
Taxi
On foot
Provider came to home
Delivered unattended at
home
Other (specify)
Don't know
Declined
Very difficult
Somewhat difficult
Not a problem
Don't know
Declined
Between 5-10 minutes
Less than 30 minutes
Less than 1 hour
Approximately 1 hour
Between 1-2 hours
More than 2 hours
Don't know
Declined
192
SKIP TO
88
99
1
2
3
4
5
6
7
->
-•
Q22d
Q22q
8
- ->
Q22q
88
99
1
2
3
88
99
1
2
3
4
5
6
88
99
QUESTIONS
AND FILTERS
Q22e. How long
after you arrived at
the facility/care
provider in labour
were you
examined? (In other
words, how long
did you have to
wait?)
Q22f. How long
were you in labour
in total?
Q22g. When you
delivered your
baby, was it put in a
special intensive
care unit or
premature nursery?
Q22h. Specify
reason that baby
was put into
intensive care or
premature nursery.
Q22L Would you
rate the quality of
care at this
facility/provider
where you delivered
as good, fair or
poor?
Q22j. Can you be
specific what was
"fair" or "poor"
about the care the
baby received?
Q22k. Was the baby
transferred to
another hospital or
facility after it was
born?
CODING
ANSWERS
Immediately
Less than 30 minutes
Less than 1 hour
Approximately 1 hour
Between 1-2 hours
More than 2 hours
Don't know
Declined
1
2
3
4
5
6
88
99
(specifv hours)
Don't know
Declined
88
99
Yes (specify reason in Q22h)
No
Don't know
Declined
1
z
88
99
Good
Fair
Poor
Don't know
Declined
1
2
3
88
99
Don't know
Declined
88
99
Yes (specify where)
No
Don't know
Declined
2
88
99
193
SKIP TO
-•Q22i
- -*- Q22k
- - • Q22k
- • Q22k
QUESTIONS
AND FILTERS
Q221. Why was the
baby transferred?
Q22m. How long
after the baby was
transferred to this
new facility/
provider did the
baby die?
Q22n. Did the
facility provide you
with any counseling
after the baby died?
Q22o. Would you
rate the quality of
care at this second
facility/provider as
good, fair or poor?
Q22p. Can you be
specific what was
"fair" or "poor"
about the care the
baby received?
ANSWERS
CODING
Lacked necessary equipment/
service child needed
To get better care
Because baby was still sick.
No doctor was available
Other (specify)
Don't know
Declined
davs
SKIP TO
1
2
3
4
88
99
hours
Yes (specify kind of
counseling)
No
Don't know
Declined
Good
Fair
Poor
Don't know
Declined
2
88
99
1
2
3
88
99
Don't know
Declined
88
99
—• Q22q
—• Q22q
—*Q22q
Q22q. Interviewer: Include any additional notes about the labour and delivery in the
space below and continue on back of page if necessary.
194
III. SOCIAL SUPPORTS
This is the last part of the interview. We would now like to ask you a few questions about
any support you received after the baby died.
Q23a. Since the loss of
the baby, have you been
able to receive counseling
or help from anyone? If
so, whom?
Q23b. Specify who
provided counseling or
help in Q23a.
Yes (specify in Q23b)
No
Don't know
Declined
Husband/baby's father
Respondent's mother/father
Respondent's sibling
Other relative
Spiritual/Religious leader...
(Tick all that
apply.)
Friend
Other children in HH
Other (specify)
Don't know
Declined
Q24a. Do you belong to a Yes
community organization? No
Declined
1
-•Q24a
88
99
A
B
C
D
E
F
G
88
99
1
2
99
—
-> Q25
Q24b. What does the
organization do?
IV. CLOSING THE INTERVIEW
Q25. Please tell us any ideas you have for how health care facilities and providers can
better serve pregnant women in (Umlazi or Umzimkhulu).
(continue on back if necessary)
195
Q26. Thinking back on this entire experience, what do you think would have made things
better or easier for you? Is there anything you would try to do differently the next time?
Q27. Is there anything else about the loss of the baby that you would like to share with
us?
(continue on back if necessary)
Q28. Our interview is now almost over but we just have two final questions. We are very
interested in whether or not you feel it was a positive experience to talk to us today about
your loss. For example, did you feel comfortable sharing your thoughts today? Do you
think you will be able to help other families by sharing your story? Any comments or
criticisms you have that might help us to make our study better would be very helpful.
(continue on back if necessary)
196
Q29. And finally, we have been talking with other mothers and families who have lost
babies in (name of area) and some of them have expressed an interest in talking with
others who have had the same experience. If you think that connecting with these family
members would be helpful to you, we would be happy to give you some contacts and to
give them your contact information. Would you like us to do that? (If respondent says no,
reiterate that you will not pass on any information about her to anyone else).
• 1 Yes, please give them my contact information
• 2 Yes, please give me any contact information you have
D 3 No I do not wish to talk with anyone else
Thank you so much for taking the time to speak with us today. Your comments are very
valuable to us and will help us better understand the problems faced by families with sick
infants. We will use your comments to inform health workers how they can better meet
the needs of families in (Umlazi or Umzimkhulu). Please be assured that your comments
will be kept anonymous. Do you have any additional questions you would like to ask
about the study we are conducting? (Answer any questions the respondent asks as best as
you are able.)
Thank you again. We are very sorry for your loss and we sincerely appreciate your time.
V. POST-INTERVIEW ASSESSMENT
QUESTIONS AND
FILTERS
PPQ1. Was another
individual present or
within hearing range
during the interview?
ANSWERS
Yes
No
Not certain
CODING
1
2
3
PPQ2. Other interviewer comments or observations (about the home, the family, the way
the interview went, non-verbal interactions):
( continue on back of page if necessary)
197
APPENDIX D: STUDY ADVISORY GROUP MEMBERS
Members based in Umzimkhulu
Sister Nompila, Assistant Manager, Rietvlei Hospital
Chief Mchunu, Emachunwini Village, Rietvlei
Makosi Mncwabe Mumsy, Sangoma
Mrs Nozuko Ngcaweni, Community Health Worker, Ibisi Clinic
Members based in Umlazi
Mrs O Shandu, Matron, Prince Mshiyeni Memorial Hospital
Mr MP Cele, Inyanga
Mrs Shabalala, Local Government Councilor, Ward 3
Other advisors to the study
Mickey Chopra, Director of Health Systems Research, Medical Research Council, Cape
Town
Debra Jackson, Professor, School of Public Health, University of the Western Cape
Tanya Doherty, Senior Researcher, Health Systems Trust
Mark Colvin, Senior Scientist, Centre for AIDS Development, Research and Evaluation
(CADRE)
Mark Patrick, Cindy Stevens, and Roopesh Bhoola, Consultants to the Perinatal Problem
Identification Programme (PPIP) and the Child Health Problem Identification Programme
(Child PIP)
198
APPENDIX E: INFORMED CONSENT FORMS
(ENGLISH, XHOSA AND ZULU VERSIONS)
GOOD START INFANT MORTALITY
SUB-STUDY
Information for Participants
PURPOSE OF STUDY
This study is titled, "The Health and Social Context of Infant Death." The purpose of this
study is to better understand the factors that play a role in the deaths of infants in Rietvlei
and Umlazi from the perspective of mothers and caregivers. To understand these factors
we are contacting mothers and caregivers who have lost infants. You have been selected
to participate because we learned of the loss of your baby through your participation in
the Good Start Study. We are also interested in learning about any contacts your baby had
with the health clinic and hospital and any contacts you had while you were pregnant.
Our goal is to develop recommendations for making the health system more responsive to
families with sick babies. You will receive compensation for your participation in this
study (in Umlazi this will be R40 and in Rietvlei this will be a food parcel worth R40).
The study is being conducted by the Johns Hopkins University in the USA in partnership
with the Good Start Study, a collaboration of the Medical Research Council, the
University of the Western Cape, and the Health Systems Trust.
CONFIDENTIALITY
All or part of the interview may be tape-recorded. This tape will be destroyed following
the completion of the study. All information obtained from you will be kept confidential.
Any reporting of data will be anonymous. The only time we are required by law to
violate our confidentiality agreement with you is if we find evidence that the infant's
death was the result of child abuse, if it appears that domestic abuse is currently
happening in the home, or if it appears that you are in danger of harming herself or
others.
RISKS & BENEFITS
• There are no known risks to participation in the study except that you may find it
stressful to recount the events leading up to the death of your baby.
• Participation in this study is voluntary. You may withdraw from the study at any time
or decline to participate in any part of the study without explaining why or without
any penalty. Your participation or non-participation will have no effect on the care
you receive from local health facilities.
199
•
•
When the study is finished, you will be invited to attend a community meeting to hear
the results and recommendations for improving health care in the community.
There will be no other direct benefits to you from this study, however your input will
help us to develop recommendations to improve the system of health services for
women and babies in this community.
EXPECTATIONS
• A private interview now about your pregnancy, health, family, home, and the illness
and death of your baby that will last approximately 1 hour.
• If you experience any problems with the study or the researchers please contact the
University of the Western Cape Faculty Research Ethics and Study Leave Committee
at (021-959-2948).
200
CONSENT TO PARTICIPATE IN THE
GOOD START INFANT MORTALITY
SUB-STUDY
The above study and conditions have been explained to me and my questions have been
satisfactorily answered by
(name of interviewer).
I understand what has been explained to me and I agree to participate in this study, and
participate in approximately a 1 hour interview with a study researcher.
I acknowledge that I have been informed concerning the possible advantages and possible
adverse effects which may result from the above mentioned study.
I acknowledge that I understand and accept that this study involves research and the
"Information for Participants" leaflet has been handed to me in connection with this
study.
I acknowledge that I understand the contents of this consent form to participate in the
above study. I am aware that my participation is voluntary and that I may withdraw my
consent at any time without prejudice to further care.
Consent regarding infant's medical records:
I agree to participate and I give permission for the study researchers to access my
child's medical records.
I agree to participate but I do NOT give permission for the study researchers to
access my child's medical records.
Consent regarding tape recording of interview:
I agree to have the interview tape recorded.
I would prefer that the interview is NOT tape recorded.
Printed name of mother/caregiver (SUBJECT):
Signed:
Date:
Signed:
Date:
(Witness)
For illiterate subjects:
Date:
Mark with a 'X'
201
MEDICAL RECORDS RELEASE
GOOD START INFANT MORTALTY SUB-STUDY
I give my permission for
to release my child's
(Hospital/Physician)
medical records to the Good Start Infant Mortality Sub-Study. This consent is valid for
12 months.
Printed name of mother/caregiver (SUBJECT):
Signed:
Date:
Signed:
Date:
(Witness)
For illiterate subjects:
Date:
Mark with a 'X'
UWC RESEARCH ETHICS REGISTRATION NUMBER: 05/8/9
NOT VALID WITHOUT THE COMMITTEE
OR IRB STAMP OF APPROVAL
CHR#:
202
LWE GOOD START INFANT MORTALITY
SUB-STUDY
Iphepha nkcukacha labaguli
INJONGO YOLUPHANDO
Isihloko soluphando sithi "Iimeko zezempilo nezentlalo abasweleka phantsi kwazo
abantwana". Injongo yoluphando kukujonga izinto ezidlala indima ekuswelekeni
kwabantwana eRietvlei naseMlazi ngokokubona koomama kunye nabagcini bantwana.
Ukuze siwuqode kakuhle lombandela siye sithethe noomama kunye nabagcini bantwana
abathe baswelekelwa ngabantwana. Uchongiwe ukuba uthathe inxaxheba apha kuba
sazingokusweleka komntana wakho ngethuba ubuthathe inxaxheba kuphando lwe Good
Start. Sinqwenela kananjalo ukwazi ngokuhambela komntwana eklinikhi okanye
esibhedlele kunye nokuhambela kwakho ngethuba wawukhulelwe. Iinjongo zethu
kukuzama ukwenza ukuba amaziko ezempilo akwazi ukukhawulelana neemfuno
zeentsapho ezinabantwana abagulayo. Uzakubonelelwa ngokuthatha inxaxheba
koluphando (E Mlazi izakubayi R40 eRietvlei izakuba yipasile yokutya exabisa iR40).
Oluphando lwenziwa yi Dyunivesithi i Johns Hopkins University ese Melika ibambisene
nabe Good Start Study, intlanganisela ye Medical Research Council,ne University of the
Western Cape, kwakunye ne Health Systems Trust.
OKUYIMFIHLELO
Yonke into ezakuthethwa ingashicilelwa. Ikhasethi leyo bekushicilelwa ngayo iyakuthi
itshatyalaliswe emva kophando. Yonke into osixelele yona izakugcinwa iyimfihlo.
Indlelo ngoluphando izakukhutshwa ingenamagama abantu. Linye kuphela ithuba
esinokunyanzeleka ukuba singayigcini iyimfihlo into osixelele yona, kuxa sithe
safumanisa ukuba umntana usweleke ngenxa yokuphatheka kakubi, naxa kukho
ubungqina bokuba kukho impatheko mbi eqhubekayo ekhayeni okanye usengozini
yokuzenzakalisa okanye wenzakalise abanye abantu.
IINGOZI & NEENZUZO
• Akukho ngozi sizaziyo ezinokwenziwa kukuthatha inxaxheba koluphando,
ngaphandle nje kokuba ungakufumanisa kukhathaza ukubalisa ngezinto ezabangela
umntana wakho asweleke.
• Akusosinyanzelo ukuthatha inxaxheba koluphando.Ungayeka naninina ufuna okanye
wale ukuthatha inxaxheba unganikanga sizathu kwaye awusayikohlwaywa.
203
•
Ukuthabatha okanye ukungathabathi kwakho inxaxheba koluphando akusayi
kuchaphazela indlela oncedwa ngayo kumaziko ezempilo akufuphi nawe.
Xa selelugqityiwe oluphando uyakuthi ubizwe kwintlanganiso uzokuva ngeziphumo
kwakunye neengcebiso zokuphucula impilo apha ekuhlaleni.
Ayikho enye into ozakuyifumana koluphando kodwa igalelo lakho lizakusinceda
ekuqulunqeni iingcebiso ezizakuphucula iinkonzo zezempilo zabantwana kunye
nabantu ababhinqileyo apha ekuhlaleni.
ONOKULINDELA
• Ukubuzwa imibuzo ngoku malunga nokukhulelwa kwakho, impilo, usapho, nokugula
kunye nokusweleka komntana wakho. Okokungathatha iyure.
• Ukuba uyewafumana iingxaki ngoluphando okanye nabaphandi nceda
uqhagamshelane ne University of the Western Cape Faculty Research Ethics kunye
Study Leave Committee kule nombolo (021-959-2948).
204
IMVUME YOKUTHATHAINXAXHEBA KUPHANDO LWE
GOOD START INFANT MORTALITY SUB-STUDY
Oluphando luchazwe ngasentla lucacisiwe kum kwaye nemibuzo yam iphendulwe
ndaneliseks ngu
(name of interviewer).
Ndiyayiqonda lento ndiyicaciselweyo
koluphando oluzakuthatha iyure.
kwaye
ndiyavuma
ukuthatha
inxaxheba
Ndiyavuma ukuba ndicaciselwe ngento ezingaluncedo nangezo zinganobunzima
ezinokuziswa kukuthatha inxaxheba kwam koluphando.
Ndiyavuma ukuba ndiyiqondile kwaye ndayivuma into yokuba oluluphando kwaye
iphepha elineekncukacha ngoluphando ndilinikiwe.
Ndiyavuma ukuba ndikuqondile okuqulathwe leliphepha mvume. Ndiyayazi ukuba
ukuthatha kwam inxaxheba apha akusosinyanzelo kwaye ndingayeka naninina ndifuna
ngaphandle kwesohlwayo okanye ukuphatheka kakubi kumaziko ezempilo.
Isivumelwano ngokuphathelene namaxwebhu achaza ngempilo yomntwana:
Ndiyavuma ukuthatha inxaxheba kwaye ndinika abaphandi ilungelo lokujonga
amaxwebhu aneenkcukacha zempilo yomntwana.
Ndiyavuma ukuthatha inxaxheba kodwa NDIYALA ukuba abaphandi bajonge
amaxwebhu aneenkcukacha zokugula komntana.
Isivumelwano ngokushicilelwa kophando:
Ndiyavuma ukuba oluphando lunga sicilelwa.
Ndikhetha ukuba oluphando lungashicilelwa.
Igama likamama okanye umgcini mntwana(SUBJECT):
Isayinwe:
Umhla:
Isayinwe:
Umhla:
(Ingqina)
Kwenzele bohluleka kukufunda nokubhala:
Umhla:
Phawula ngo 'X'
205
MEDICAL RECORDS RELEASE
GOOD START INFANT MORTALTY SUB-STUDY
Ndiyamvumela u
ukuba akhulule amaxwebhu
(Hospital/Physician)
anenkcukacha zokugula zomntwana warn kubanu bakwa Good Start Infant Mortality
Sub-Study. Esisivumelwano zingasetyenziswa kwisithuba seenyanga ezilil2.
Igama likamama okanye umgcini mntwana
(SUBJECT):
Isayinwe:
Umhla:
Isayinwe:
Umhla:
(Ingqina)
Kwenzele bohluleka kukufunda nokubhala:
Umhla:
Phuwula ngo 'X'
UWC RESEARCH ETHICS REGISTRATION NUMBER: 05/8/9
NOT VALID WITHOUT THE COMMITTEE
OR IRB STAMP OF APPROVAL
CHR#:
206
UCWANINGO LWEGOOD START INFANT
MORTALITY
Imininingvvane yabantu abangenela ucwaningo
INHLOSO YALOLUCWANINGO
Lolucwaningo lubizwa nge "The Health and Social Context of Infant Death",
ngamafushane lokhu kuchaza ukuthi sifuna ukwazi kabanzi ngezempilo nesimo senhlalo
mayelana nokushona kwezingane. Inhloso yalolucwningo ukuthola komama nakubantu
abanakekela abantwana ukuthi ngabe bona bacabanga ukuthi yiziphi izimo ezidlala
indima ekushoneni kwezingane eRietvlei naseMlazi. Ukuze siluqondisise loludaba
sikhuluma nomama nababheki bezingane abashonelwe izingane. Ukhethiwe ukuthi
uthathe ingxenye kulolucwaningo ngoba sizwe ngokushona kwengane yakho, kanti futhi
kungoba wawuyingxenye lweGood Start. Sifisa ukwazi mayelana nobudlelwano ingane
yakho eyayinabo noMtholampilo nesibhedlela, kanye nabobonke owake wayobabona
ngenkathi ukhulelwe. Inhloso yethu ukuthola izindlela ezingcono ezizokwenza umkhakha
wezempilo ukuthi ukwazi ukusiza imindeni enezingane ezigulayo. Uzophiwa okuthile
ngokuzimbandakanya kwakho kulolucwaningo (imali engangoR40 eMlazi, eRietvlei
amaphasela okudla abiza uR40).
Lolucwaningo Iwenziwa ngabe Johns Hopkins University eMelika, babambisane
nabocwaningo lweGood Start lona oluhlanganisa iMedical Research Council, iNyuvesi
yaseNtshonalanga Koloni kanye neHealth Systems Trust.
UKUNGAVEZWA KWEMININGWANE EYIMFIHLO
Ingxenye noma yonke inkulumo mpendulwano ingahle iqoshwe ngesiqopha mazwi.
Lesisiqopha mazwi sizopheliswa singaphinde sitholakale emva kokuba seluphothuliwe
lolucwaningo. Yonke imininingwane nolwazi oluvela kuwe luzogcinwa luyimfihlo.
Angeke livezwe igama lakho kuyona yonke imibhalo eyoshicilelwa. Ngokomthetho
kufanele siphule isivumelwano sethu sokungavezi izimfihlo zakho, uma sithola ukuthi
ukuhlukunyezwa kwengane yikona okwaholela ekushoneni kwayo, uma kuvela ukuthi
kukhona udlame nokuhlumezeka ekhaya, noma wena usengozini yokuzilimaza noma
abanye.
UBUNGOZI NONGAKUZUZA
• Akukho bungozi obaziwayo ngokuzimbandakanya kulolucwaniningo, ngaphandle
kokuthi ungakuthola kunzima ukukhuluma ngezigigaba ezaholela ekushoneni
kwengane yakho.
• Awuphoqelelekanga
ukuthi
ubeyingxenye
yalolucwaningo. Ungashiya
lolucwaningo phakathi, nanoma nini uma ungasakwazi ukuqhubeka nokuba
yingxenye yalo. Akukho mali okufanele uyikhiphe noma incazelo okuzofanele
uyinike ngokushiya kwakho. Ukuzimbandakanya noma ukungazimbandakanyi
kwakho angeke kubenomthelela kundlela abakuphatha ngayo ezindaweni
zezempilo kulendawo ohlala kuyo.
207
•
•
Emva kokuthi seluphothuliwe lolucwaningo, uzobizwelwa emhlanganweni
womphakathi lapho kuyovezwa khona imiphumela nezindlela zokwenza isimo
sezempilo sibengcono kulomphakathi.
Akukho ozokuzuza wena ngqo kulolucwaningo, kodwa okungenani imibono
nolwazi lwakho luzosisiza ukwenza indlela engcono yokuthuthukisa izinga
lezempilo komama nasezinganeni kulomphakathi.
OKULINDELEKILE
o Inkulumo mpendulwano ezothatha isikhathi esingaphezu noma ngaphansi
kwehora elilodwa, endaweni efihlekile lapho kuzokhulunywa khona
ngokukhulelwa kwakho, ezempilo, umndeni, ukugula kanye nokushona
kwengane.
o Uma ubanenkinga ngalolucwaningo noma abacwaningi sicela uthinte
abeNyuvesi yase Ntshonalanga koloni kuFaculty Research Ethics and Study
Leave Committee kulnombolo ethi (021-959-2948).
208
UKUVUMA UKUZIMBANDAKANYA
KUCWANINGO
LWEGOOD START INFANT MORTALITY
Ngichazelwe kabanzi ngalolucwaningo nangemibandela yalo, nemibuzo yami
iphendulwe ngendlela egculisayo ngu
(igama
lomcwaningi).
Ngiyakuzwisisa konke engikuchazelwe, futhi ngiyavuma ukuzimbandakanya
kulolucwaningo, ngiphinde futhi ngibe nenkulumo mpikiswano engathatha ihora
elilodwa nomcwaningi.
Ngiyaqinisekisa ukuthi ngazisiwe ngobuhle nangemithelela engemihle angahle ibekhona
kulolucwaningo. Ngiyaqinisekisa ukuthi ngiyazwisisa ngiphinde ngivume ukuthi
lolucwaningo lufaka phakathi ukucingwa kolwazi, futhi iphepha elibizwa i
"Imininingwane yabantu abangenela ucwaningo"
elimayelana nalolucwaningo
ngilinikiwe.
Ngiyavuma ukuthi ngiyaqonda futhi ngiyazwisisa konke okuhabelana nokuvuma
ukuzimbandakanya kulolucwaningo. Ngiyazi ukuthi angiphoqekelanga ukuthatha
ingxenye ,futhi ngingashiya phakathi ucwaningo noma nini ngaphandle kokucwaswa
kwabezempilo emva kwalokhu.
Igunya mayelana nemininingwane ephathelene nomlando wokugula kwengane
Ngiyavuma ukuzimbandakanya,ngiphinde nginike abacwaningi igunya lokuthi
bangathola ulwazi lonke mayelana nokugula kwengane yami
Ngiyavuma ukuzimbandakanya kodwa ANGIVUMI ukunika igunya
abacwaningi ukuthi bathole noma bafunde imininingwane ephathelene
nomlando wokugula kwengane yami.
Imvume mayelana nokuqoshwa kwenkulumo mpendulwano
Ngiyavuma ukuthi inkulumo mpendulwano iqoshwe ngesiqopha mazwi
Ngithanda ukuthi inkulumo mpendulwano ingaqoshwa
Igama lomama/onakekela ingane ngokugcwele:
Isayinwe:
Usuku:
Isayinwe:
Usuku:
(Ufakazi)
Abangakwazi ukufunda
Usuku:
Bhala isiphambano u'X'
209
UKUKHISHWA KOMLANDO WOKUGULA
UCWANINGO LWEGOOD START INFANT MORTALITY
Nginikeza igunya ku_
_ukuthi angaveza yonke
(Isibhedlela noma umsebenzi wezempilo)
imininingwane ephathelene nomlando wokugula kwengane yami kwabocwaningo
lweGood start Infant Mortality.
Lemvume ingasetshenziswa isikhathi esiyizinyanga ezeshumi nambili.
Igama lomama/onakekela ingane ngokugcwele:
Isayinwe:
Usuku:.
Isayinwe:
Usuku:_
(Ufakazi)
Abangakwazi ukufunda
Usuku:.
Bhala isiphambano u'X'
UWC RESEARCH ETHICS REGISTRATION NUMBER: 05/8/9
NOT VALID WITHOUT THE COMMITTEE
OR IRB STAMP OF APPROVAL
CHR#:
210
APPENDIX F: DATA ABSTRACTION FORM FOR
MEDICAL RECORDS
Confirm that consent to review medical records has been received:
YES D
NO D
(If NO, do not continue with data abstraction until consent has been received.)
Study Site
Umzimkhulu •
Umlazi •
Child's Surname
Forenames
South African ID Number
Date of Birth
Child ID number for study
Name of Facility
Type of Facility
Clinic n
Hospital (tertiary u regional G district u)
Other (specify) !~1
Data abstractor's name
On the following pages, complete fields for date, diagnosis/treatment/care provided (e.g.
well child visit) or referral, and any provider notes/comments available for each contact
with this facility (up to 10) beginning with most recent contact and working backward in
time.
Indicate child ID number for study on each page.
211
Date:
/
/
Diagnosis/Treatment/Care Provided/Referral:
Provider's Notes/Comments:
(Note: This page is to be copied multiple times to allow for collection of data on each
visit)
212
APPENDIX G: SOUTH AFRICAN PERINATAL PROBLEM
IDENTIFICATION PROGRAMME (PPIP) AND
CHILD HEALTHCARE PROBLEM
IDENTIFICATION PROGRAMME (CHILD PIP)
CODE LISTS
Code
100
101
102
103
104
105
106
107
108
109
110
111
112
113
114
115
116
117
118
119
199
200
201
202
203
204
205
206
207
208
209
210
211
212
213
214
215
216
217
218
219
299
Perinatal Problem Identification Programme (PPIP)
Avoidable Factors
Patient associated
Never initiated antenatal care
Booked late in pregnancy
Infrequent visits to antenatal clinic
Inappropriate response to rupture of membranes
Inappropriate response to antepartum hemorrhage
Inappropriate response to poor fetal movements
Delay in seeking medical attention during labor
Attempted termination of pregnancy
Failed to return on prescribed date
Declines admission/treatment for personal/social reasons
Partner/Family declines admission/treatment
Assault
Alcohol abuse
Smoking
Delay in seeking help when baby ill
Infanticide
Abandoned baby
Drug abuse
Poor diabetic control
Other
Administrative problems
Lack of transport - Home to institution
Lack of transport - Institution to institution
No syphilis screening performed at hospital / clinic
Result of syphilis screening not returned to hospital/clinic
Inadequate facilities/equipment in neonatal unit/nursery
Inadequate theatre facilities
Inadequate resuscitation equipment
Insufficient blood / blood products available
Personnel not sufficiently trained to manage the patient
Personnel too junior to manage the patient
No dedicated high risk ANC at referral hospital
Insufficient nurses on duty to manage the patient adequately
Insufficient doctors available to manage the patient
Anesthetic delay
No Motherhood card issued
No on-site syphilis testing available
No accessible neonatal ICU bed with ventilator
Staff rotation too rapid
Lack of adequate neonatal transport
Other
213
300
301
302
303
304
305
306
307
308
309
310
311
312
313
314
315
316
317
318
319
320
321
322
323
324
325
326
327
328
329
330
331
332
333
334
335
336
337
338
339
340
341
399
400
401
402
403
Medical personnel associated
Medical personnel overestimated fetal size
Medical personnel underestimated fetal size
No response to history of stillbirths, abruptio etc.
No response to maternal glycosuria
No response to poor uterine fundal growth
No response to maternal hypertension
No antenatal response to abnormal fetal lie
No response to positive syphilis serology test
Poor progress in labor, but partogram not used
Poor progress in labor, but partogram not used correctly
Poor progress in labor - partogram interpreted incorrectly
Fetal distress not detected intrapartum; fetus monitored
Fetal distress not detected intrapartum; fetus not monitored
Management of 2nd stage: prolonged with no intervention
Management of 2nd stage: inappropriate use of forceps
Management of 2nd stage: inappropriate use of vacuum
Delay in medical personnel calling for expert assistance
Delay in referring patient for secondary/tertiary treatment
No response to apparent post-term pregnancy
Neonatal care: inadequate monitoring
Neonatal resuscitation inadequate
Neonatal care: management plan inadequate
Baby sent home inappropriately
No response to history of poor fetal movement
Breech presentation not diagnosed until late in labor
Multiple pregnancy not diagnosed intrapartum
Physical examination of patient at clinic incomplete
Doctor did not respond to call
Delay in doctor responding to call
Iatrogenic delivery for no real reason
Nosocomial infection
Multiple pregnancy not diagnosed antenatally
GP did not give card/letter about antenatal care
Fetal distress not detected antenatally; fetus monitored
Fetal distress not detected antepartum; fetus not monitored
Baby managed incorrectly at Hospital/Clinic
Inadequate / No advice given to mother
Antenatal steroids not given
Incorrect management of antepartum hemorrhage
Incorrect management of premature labor
Incorrect management of cord prolapse
Other
Insufficient notes to comment on avoidable factors
Insufficient notes
File missing
Antenatal card lost
214
Sub-category of
Modifiable Factors
Code
Child Healthcare Problem Identification
Programme (Child PIP) Modifiable Factors
Family 1 Caregiver
Timing
Infrequent clinic attendance
F101
F102
Delay in seeking care
Caregiver did not realize severity of illness
F103
Recognition
F104
Caregiver refusing treatment
F105
Home treatment with negative effect on the child, e.g. enema
F106
Never immunised / behind with immunisations
Immunisations
F107
Inappropriate nutrition
Nutrition
Not present / referral letter lost
RTHC
F108
F109
Declining HIV test
Consents / Returns
F110
Did not arrive on day of referral / did not keep appointment
Other
Other modifiable factor concerning caregiver / family (specify)
F189
Insufficient information / notes on caregiver / family care
Insufficient Information
F190
Clinic / Ambulatory Care: Clinical Personnel
Insufficient assessment for acute respiratory infection / LRTI
P301
Case Assessment
P302
IMCI not used for patient assessment
P304
Insufficient assessment for failure to thrive
Other insufficient assessment (specify)
P309
P311
No weight / other inappropriate use of RTHC
Monitoring
P312
O saturation (at Community Health Centre)
Case Management
Delay in Referring Acute
Delay in Referring Chronic
Other
P319
P321
P322
P323
P324
P325
P331
P332
P333
P341
P342
P343
P379
Other insufficient monitoring (specify)
No appropriate stat antibiotics / antibiotics for acute infection
No TB contact treatment
Insufficient fluid management for gastro-enteritis with
dehydration
Insufficient investigations done
IMCI not used for case management
Delay in referring acute respiratory infection
Delay in referring gastro-enteritis with dehydration
Delay in referring other acute problem (specify)
Delay in referring failure to thrive
Delay in referring chronic cough
Delay in referring chronic diarrhea
Other modifiable factor - clinical personnel at clinic level
(specify)
Inappropriate care / late referral from Private Sector
P380
Inappropriate Care by
GP
P390
Insufficient notes
Insufficient Information
Clinic /Ambulatory Care: Administration
C211
Home to Institution
Lack of Transport
C213
Clinic / CHC to Hospital
C222
Lack of clinic / limited opening times
Lack of Access
C224
Lack of high care beds / resuscitation area
Barriers to entry to healthcare
C227
Barriers
Lack of professional nurse at clinic
C231
Lack of Personnel
C239
Other lack of personnel (specify)
215
Sub-category of
Modifiable Factors
Code
Communication
C241
C249
Lack of Drugs, IV fluids
etc
C254
Child Healthcare Problem Identification
Programme (Child PIP) Modifiable Factors
Communication problems: Staff to caregiver
Staff to staff communication problem at clinic or between
clinic and hospital
O supply / equipment
C255
C256
C258
Antibiotics
Other lack of drugs, IV fluids (specify)
Basic laboratory investigation not available (e.g. blood
Laboratory
glucose)
Pulse oxymeter (at CHC)
C261
Lack of Equipment
C262
Suction
Lack of other equipment (specify)
C263
C271
Concerning short-stay for pediatric patients at health care
Lack of Policy
centre
Other lack of protocol / policy (specify)
C279
Insufficient Information
C290
Insufficient notes
Admission and Emergency (Hospital): Clinical Personnel
P401
History taking incomplete
Case Assessment
P402
Physical examination incomplete
P403
Respiratory rate not taken, respiratory distress not noticed
P404
Assessment of shock / dehydration insufficient
P405
Appropriate investigations not done (blood, x-ray, other)
P406
Results of investigations not noted
P407
Not classified as critically ill by nurse / danger signs not
noticed
P409
Other insufficient case assessment (specify)
P411
Respiratory rate
Monitoring
P412
O saturation
P413
P414
P415
P419
P421
P422
P423
2
Blood glucose
Shock
Level of consciousness, convulsions
Other insufficient monitoring (specify)
Shock not treated appropriately (e.g. intra-osseus line)
Case Management
Airway obstruction not managed appropriately
Appropriate O therapy not prescribed / not recorded / not
given
P424
Convulsions not managed appropriately
P425
Appropriate antibiotics not prescribed
P426
Other insufficient case management (specify)
Insufficient notes
P490
Insufficient Information
Admission and Emergency (Hospital): Administrators
A211
Home to Institution
Lack of Transport
A214
Hospital to Referral Hospital / Institution to Institution
A223
Lack of hospital beds / ward overcrowded
Lack of Access
A224
Lack of high care beds / resuscitation area
A225
Lack of infant / pediatric ICU facilities
A227
Barriers to entry to healthcare
Barriers
216
Sub-category of
Modifiable Factors
Code
Child Healthcare Problem Identification
Programme (Child PIP) Modifiable Factors
Lack of Personnel
A232
Lack of professional nurse at hospital (specify: day / night /
week end)
Lack of senior doctors (post Community Service)
Other lack of personnel (specify)
Staff to caregiver
Doctor not called for critically ill child
Doctor to doctor (e.g. no hand over of critically ill patient)
Doctor called, but did not respond / did not come
Other staff to staff communication problem (specify)
Oz supply / equipment
Communication
Lack of Drugs, IV
Fluids etc
A233
A239
A242
A243
A245
A246
A249
A254
A255
A256
A257
A258
Laboratory
A261
Lack of Equipment
A262
A263
A273
Lack of Policy
A279
A290
Insufficient Information
Ward {Hospital): Clinical Personnel
P501
Case Assessment
P502
P504
P507
P508
P509
P510
Monitoring
P521
Case Management
P523
P524
P525
P526
P529
P531
P532
P533
P534
P535
P536
P537
P538
Antibiotics
Other lack of drugs, IV fluids (specify)
Lack of blood products
Basic laboratory investigation not available
Pulse oxymeter
Suction
Lack of other equipment (specify)
Lack of case management protocol
Other lack of protocol / policy (specify)
Insufficient notes
Physical examination incomplete
Appropriate investigations not done
Results of investigations not traced / not noted (including xrays)
LRTI / ARI not responding to treatment, not reassessed
Other condition not responding to treatment, not reassessed
Patient not seen during week-end / public holiday
Insufficient case assessment / management at previous
admission / OPD visit
Respiratory rate / O saturation
Blood glucose
Shock
Level of consciousness, convulsions
Electrolytes
Other insufficient monitoring (specify)
Appropriate 0 therapy not prescribed / not recorded / not
given
Convulsions not managed appropriately
Appropriate change / addition of antibiotics / TB Rx not
prescribed
Appropriate blood product not prescribed
Other appropriate treatment not prescribed (specify)
Other case management protocol not followed (specify)
No team decision for terminal care
Prescribed treatment not given
217
Sub-category of
Modifiable Factors
Code
Child Healthcare Problem Identification
Programme (Child PIP) Modifiable Factors
Delay in Calling for
Senior Opinion
P601
Community Service Doctor / Intern did not call senior Medical
Officer
MO at peripheral hospital did not call provincial hospital /
referral hosp
Other delay in calling for senior opinion
To provincial hospital / referral hospital for coma / CT scan
To provincial hospital / referral hospital for other problem
Other delay in referring
No prescription for IV fluids
IV fluids not monitored / not recorded appropriately
Too much / too little / incorrect type of IV fluids prescribed /
given
No appropriate intake-output charting done
NG tube feedings not prescribed
NG tube feedings not recorded / given
Other appropriate feedings not recorded / not given
Problems with NG tube feedings (e.g. cough, cyanosis)
Other modifiable factor (specify)
Insufficient notes
P602
Delay in Referring
IV Fluids / IntakeOutput
P603
P611
P612
P613
P621
P622
P623
P624
P631
P632
P633
P634
Other
P689
Insufficient Information
P690
Ward (Hospital): Administrators
W214
Lack of Transport
W223
Lack of Access
W224
W225
W232
Lack of Personnel
Feeding / NG Tube
Communication
Lack of Drugs, IV etc
Laboratory
Lack of Equipment
Lack of Food / Milk
Lack of Policy
Insufficient Information
W233
W239
W242
W243
W245
W246
W249
W254
Hospital to Referral Hospital
Lack of hospital beds / ward overcrowded
Lack of high care beds / resuscitation area
Lack of infant / pediatric ICU facilities
Lack of professional nurse at hospital (specify: day / night /
week-end)
Lack of senior doctors (post Community Service)
Other lack of personnel (specify)
Staff to caregiver
Doctor not called for critically ill child
Doctor to doctor (e.g. no handover of critically ill patient)
Doctor called, but did not respond / did not come
Other staff to staff communication problem (specify)
0 supply / equipment
W255
W256
W257
W258
W261
W262
W263
W269
W272
W273
W279
W290
Antibiotics
Other lack of drugs, IV fluids (specify)
Lack of blood products
Basic laboratory investigation not available
Pulse oxymeter
Suction
Lack of other equipment (specify)
Lack of food / milk
For weekend / holiday ward rounds
Lack of case management protocol
Other lack of protocol / policy (specify)
Insufficient notes
218
APPENDIX H: DETAILED TABLES BASED ON
CAREGIVER AND BIOMEDICAL ASSESSMENTS OF
CAUSES OF DEATH (MANUSCRIPT 3)
Table H.l: Caregiver and biomedical assessments of cause of death
Cause of death
Possible cause(s) of death
Age of
Caregiver's verbal cause of
death (if provided)
listed on death
based on review by biomedical
child
certificate (if death
panel
(completed
days or
certificate
weeks)
obtained)
Early infant deaths (occurring shortly after birth or before leaving birth facility)
Umzimkhulu
N/A
<1 day The nurses told me that I was
labor related intrapartum
in labor for a long time so the
asphyxia, hypoxic ischaemic
baby came out distressed
encephalopathy, birth asphyxia
<1 day The baby was distressed that
N/A
labor related intrapartum
is what I feel might have been
asphyxia, hypoxic ischaemic
the cause of my baby's death.
encephalopathy, birth asphyxia
I was in labor for a long time
<1 day Don't know
N/A
hypoxic ischaemic
encephalopathy, birth asphyxia
<1 day Don't know but if I was
N/A
labor related intrapartum
quickly taken to theatre for a
asphyxia, hypoxia
cesarean section my baby
would have been still living
today
<1 day Don't know
N/A
prematurity/immaturity, preterm
rupture of membranes with
chorioamnionitis
<1 day
The GP I saw later said my
baby died because my uterus
had an infection
N/A
prematurity/ immaturity
<1 day
Don't know
N/A
<1 day
Don't know
N/A
2 days
Don't know
N/A
1 week
Don't know
N/A
labor related intrapartum
asphyxia, hypoxia, hypoxic
ischemic encephalopathy
labor related intrapartum
asphyxia, hypoxia, hypoxic
ischemic encephalopathy
labor related intrapartum
asphyxia, hypoxic ischemic
encephalopathy, birth asphyxia
hypoxia, hypoxic ischemic
encephalopathy, from cephalopelvic disproportion
Umlazi
<1 day
Don't know
N/A
219
extreme multi-organ immaturity
(birth weight 900g, 28 weeks
gestation), pulmonary
Age of
child
(completed
days or
weeks)
Caregiver's verbal cause of
death (if provided)
Cause of death
listed on death
certificate (if death
certificate
obtained)
<1 day
The doctors told me the baby
was severely abnormal and
there was no way she could
have lived
Don't know
Natural causes
<1 day
1 week Don't know
1 week Don't know
Other infant deaths (illness began at home)
llmzimkhulu
3 weeks Sunken fontanelle
4 weeks Pneumonia
N/A
N/A
Natural causes
N/A
N/A
6 weeks
Vomiting and diarrhea
6 weeks
7 weeks
9 weeks
Red mark on back of head
Sore inside of umbilical cord
Don't know
Obtained but not
available to review
during interview
Natural causes
N/A
Natural causes
12 weeks
Pneumonia
N/A
16 weeks
Pneumonia
N/A
20 weeks
Don't know
N/A
24 weeks
Pneumonia
N/A
27 weeks
N/A
35 weeks
Vomiting and diarrhea,
poisoning
Don't know
Umlazi
4 weeks
8 weeks
Abdominal pains and TB
Don't know
N/A
Natural causes
9 weeks
Evil spirit
N/A
11 weeks
Diarrhea
Natural causes
13 weeks
Don't know
Natural causes
N/A
220
Possible cause(s) of death
based on review by biomedical
panel
hemorrhage
congenital anomaly
extreme multi-organ immaturity
(birth weight lOOOg, 20 weeks
gestation)
extreme multi-organ immaturity
(birth weight lOOOg, 28 weeks
gestation)
meconium aspiration
diarrheal disease
acute respiratory infection
(ARI), septicemia
acute diarrhea; hypovolemic
shock, ARI, HIV exposure
ARI
ARI, serious bacterial infection
sepsis/ meningitis/ ARI or
Pneumocystis carinii pneumonia
(PCP)
ARI, diarrheal disease,
septicemia
ARI, acute diarrhea,
hypovolemic shock
diarrhea disease, hypovolemic
shock
ARI, PCP, pulmonary
tuberculosis, HIV infection in
both mother and child
diarrheal disease, acute diarrhea,
hypovolemic shock
acute diarrhea, hypovolemic
shock
ARI, tuberculosis, HIV/AIDS
congenital malformation
(hydrocephalus)
unable to assign (only
symptoms described were
'weakness' and 'floppiness')
septicemia, chronic diarrhea,
ARI, HIV/AIDS
acute diarrhea, hypovolemic
shock, dysentery
Age of
child
(completed
days or
weeks)
13 weeks
16 weeks
16 weeks
16 weeks
17 weeks
19 weeks
19 weeks
20 weeks
20 weeks
Cause of death
listed on death
certificate (if death
certificate
obtained)
Natural causes
N/A
N/A
N/A
N/A
Caregiver's verbal cause of
death (if provided)
Pneumonia
Diarrhea and fever
Sub-coastal recession
Vomiting, thrush
Traditional illnesses
Natural causes
Natural causes
N/A
N/A
22 weeks
23 weeks
24 weeks
25 weeks
Don't know
Don't know
Diarrhea
Difficulty in breathing and
pneumonia
AIDS
Meningitis
Abdominal pains
Diarrhea
29 weeks
31 weeks
32 weeks
Don't know
Don't know
Pneumonia
Natural causes
Natural causes
N/A
39 weeks
43 weeks
Diarrhea and vomiting
Vomiting
Natural causes
N/A
Natural causes
Meningitis
N/A
Natural causes
Possible cause(s) of death
based on review by biomedical
panel
ARI
fever of unknown origin
ARI
ARI, HIV/AIDS
acute diarrhea, possible
tuberculosis
ARI
ARI
acute diarrhea
ARI
Chronic diarrhea, HIV/AIDS
meningitis (bacterial or viral)
ARI
acute diarrhea, hypovolemic
shock
ARI, HIV/AIDS
Chronic diarrhea, HIV/AIDS
Congenital malformation
(constricted esophagus)
acute diarrhea, HIV/AIDS
ARI, HIV/AIDS
H.2: Summary of factors associated with infant deaths,
as assessed by caregivers and biomedical panel
Factors associated with death
CaiTgi\er-related
Delays
Delay in seeking medical attention
during labor
Lack of financial resources to go to
hospital
Delay in seeking help when baby ill
Delay in seeking help from medical
provider specifically
Not realizing the severity of child's
illness
Treatments provided
Use of traditional herbs (isihlambezi
or imbelekisani) that can cause
premature labor/ increased uterine
contractions
Home treatment with negative effect
on child/inappropriate management
at home/traditional treatment that
Umzimkhulu
Caregiver
Biomedical
assessment
assessment
2
Umlazi
Caregiver
Biomedical
assessment
assessment
1
3
1
1
1
9
4
7
3
9
221
8
1
3
Factors associated with death
may have worsened baby's condition
Personal health of caregiver
Maternal illness
Other actions/inactions
Detrimental behaviors during
pregnancy (e.g., drinking too much
ice water or smoking)
Inappropriate response to labor (i.e.,
choosing to go to a hospital several
hours away)
Pushed too hard during labor
Inappropriate response to ill baby
(i.e., waiting for in-laws' approval
before seeking intervention)
Discharged child against medical
advice/ refusing treatment
Not learning HIV status during
pregnancy (which prevented baby
from receiving appropriate treatment)
Listening to others' advice about
what to do
Not listening to others' advice about
what to do
Working too much to care properly
for baby
No caregiver problems identified
Health care access-related
Transport
Lack of transport from home to
institution
Ambulance never came/delay in
arrival
Lack of transport from GP to hospital
Administrative problems
Clinic hours
Barriers to entry at clinic
Barriers to entry at hospital
No access problems identified
Health care (|iiality-rclutcdv
Clinical assessment
Delay in being attended to/examining
child (hospital)
Staff in hospital underestimated fetal
size
Severity of illness not recognized by
provider (clinic staff)
Severity of illness not recognized by
provider (GP)
Severity of illness not recognized by
provider (traditional healer)
Umzimkhulu
Caregiver
Biomedical
assessment
assessment
1
1
Umlazi
Caregiver
Biomedical
assessment
assessment
1
3
1
1
1
2
2
1
1
1
1
1
12
4
4
5
1
1
18
0
1
1
1
18
1
1
1
2
1
16
15
•
—
24
1
1
26
•
1
1
2
1
2
2
1
3
222
2
Factors associated with death
Umzimkhulu
Caregiver
Biomedical
assessment
assessment
1
Insufficient assessment (for ARI,
HIV, syphilis, other illnesses)
Clinical management
1
2
Inappropriate response to maternal
hypertension or infection during
pregnancy (clinic)
Inappropriate response to antepartum
hemorrhage (hospital)
5
4
Delay in being attended to while in
labor (hospital)
Prolonged 2nd stage of labor with no
6
intervention (hospital)
Delay in calling for expert assistance
1
during labor (hospital)
1
Baby sent home inappropriately
1
(hospital)
Delay in response to sick child
1
1
Inappropriate response to sick child
3
(hospital)
Inappropriate management of sick
3
child (hospital)
Inappropriate management of sick
1
child (clinic)
Inappropriate management of sick
4
child (traditional healer)
Inappropriate management of sick
2
child (GP)
Delay in referring acute problem
(clinic)
Insufficient monitoring
1
Insufficient investigations
Other
Inappropriate ambulance service
1
response
Lack of services because of public
strike
Lack of proper equipment
Communication problems
1
Hospital acquired infection
1
11
No quality problems identified
Don't know/No factors identified as being associated with infant death
2
Don't know
3
Nothing/it was fate
Prematurity/congenital
malformation
t Problem in quality of care at public sector facility unless otherwise noted
223
Um azi
Caregiver
assessment
1
Biomedical
assessment
23
1
1
3
1
1
4
2
5
1
1
2
1
4
1
1
2
2
1
9
1
5
4
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Treger L & Chopra M (2007) Community-based situation analysis of maternal and
neonatal care in South Africa to explore factors that impact utilization of maternal
health services. Journal of Midwifery and Womens' Health 52, 342-350.
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CURRICULUM VITAE
ALYSSA BETH SHARKEY
2 Washington Square Village #80
New York, NY 10012
Date and place of birth: December 15, 1969, Washington, DC, USA
EDUCATION
PhD Candidate in Population, Family and Reproductive Health. The Johns
Hopkins University Bloomberg School of Public Health, Baltimore, MD, September
2002-present. 2002-2006 recipient of PFHS Departmental Scholarship. 2003 recipient
of the Janice Eddy Mickey Endowed Scholarship for Health and Human Rights. 2004
recipient of The Willian Endowment for Excellence in Science. 2003-2004 Student
Fellow, Maternal and Child Health Section, American Public Health Association.
2003-2004 President, Student Health and Human Rights Group. 2005 recipient of the
Department of Population and Family Health Sciences Dissertation Grant Award.
Dissertation: The health and social context of infant death: Reflections from South
Africa.
Master of Science (Medicine) in Pediatrics and Child Health. University of Cape
Town, Cape Town, South Africa, 2000. Dissertation: Firearm-related injuries in
Cape Town children and youth, 1992-1996.
Master of Health Science in Maternal and Child Health. The Johns Hopkins
University Bloomberg School of Public Health, Baltimore, Maryland, 1993.
Concentration in Health Policy and Management. Maryland State Senatorial
Scholarship Recipient 1991-1993. Thesis: Primary care system development: A future
for Arizona's children.
Bachelor of Science in Family and Community Development. University of
Maryland. College Park, Maryland, 1991. Concentration in Health and Human
Development. Dean's List 1989-1991, College of Human Ecology Outstanding
Graduating Senior, Outstanding Young Women of America, Kappa Omicron Nu
Honor Society (President), Golden Key Honor Society.
PROFESSIONAL EXPERIENCE
Researcher, Professors Bernard Guyer and Holly Grason, Department of Population,
Family and Reproductive Health, The Johns Hopkins University Bloomberg School
of Public Health. October-August 2007.
•
Produced summaries of the scientific evidence for programs to prevent and treat
obesity and tobacco use among children and youth (developed as part of a report
for the Pew Charitable Trust on "Investing in Children")
239
•
Produced a series of op-ed pieces focusing on the importance of investing in
maternal and child health to support a Hopkins contract with the Association of
Maternal and Child Health Programs.
Consultant, Francois-Xavier Bagnoud (FXB) Center for Health and Human Rights,
International Health and Human Rights Program, Harvard University School of
Public Health. Boston, MA. June 2005.
•
Conducted a review of the literature on the conceptualization,
design/implementation, and evaluation of human rights based approaches,
particularly with respect to HIV/AIDS, other health programs and development
programs.
Researcher, Professor David Bishai, Department of Population and Family Health
Sciences, The Johns Hopkins University Bloomberg School of Public Health.
January-October 2004.
•
•
Provided research assistance on a project funded by the Global Alliance for
Vaccines & Immunization (GAVI) and designed to model the costs of scaling up
vaccine coverage to the 75 poorest countries in the world.
Conducted literature review on the cost-effectiveness of public health
interventions for child survival in lower and middle income countries.
Teaching Assistant, Principles of Health and Development across the Lifespan,
Department of Population and Family Health Sciences, The Johns Hopkins
University Bloomberg School of Public Health. September-October 2003.
•
Assisted faculty with organizational and administrative aspects of the course,
grading student assignments, and leading small group discussions.
Research Intern, Francois-Xavier Bagnoud (FXB) Center for Health and Human
Rights, International Health and Human Rights Program, Harvard University School
of Public Health. Boston, MA. June-August 2003.
•
•
Conducted research on behalf of the UNAIDS Global Reference Group on HIV
and Human Rights relating to mandatory, routine, and voluntary testing, and
access to care and treatment.
Conducted background research to support the development of articles for
publication.
Consultant, Medical Care Development International (MCDI), Washington, DC.
November 2002.
•
Reviewed MCDI's 2002 child survival program grant proposals to the United
States Agency for International Development (USAID).
240
Senior Program Officer, Medical Care Development International, Washington,
DC. April 2001- July 2002.
•
•
•
•
•
Assisted in the coordination and supervision of MCDI's health activities in Africa
and South America, including management of health and child survival field
programs in South Africa, Mozambique, Tanzania, Lesotho, Swaziland, Bolivia,
and Madagascar. Key project focus areas included Integrated Management of
Childhood Illness (EVICT), HIV/AIDS and orphaned and vulnerable children
affected by HIV/AIDS, and promotion of community-based and home-based care.
Acted as Interim Project Manager for the Ndwedwe District Child Survival
Project, Durban, South Africa (October-December 2001). Responsibilities
included managing a field team of seven, developing a six-month strategic plan,
coordinating activities and program activities with government and nongovernment partners, overseeing administrative and financial management of the
project, preparing for external final evaluation of first phase of the project,
supervising field team preparation for a baseline Knowledge, Practices, and
Coverage (KPC) survey for the second phase of the project, and recruiting for a
project manager.
Assumed significant responsibility for preparation of MCDI's health-related
technical and financial proposals to the USAID, the African Development Bank,
the United States Department of Defense, and Margaret Sanger Centre
International.
Carried out administrative and managerial duties such as developing workplans,
designing budgets, and negotiating contracts with consultants and staff.
Represented the organization at meetings, conferences, and forums.
Research Associate, Assessing the New Federalism, Urban Institute, Washington,
DC. September 1999 - April 2001.
• A member of the core management team of Assessing the New Federalism (ANF),
a privately funded project which focuses on analysis of the devolution of
responsibility for social programs from the federal government to the states,
including health care, income security, job training, and social services. Specific
activities included:
- managing the development and release of Snapshots of America's Families and
Snapshots of America's Families II, multisectoral reports presenting the first
findings from the 1997 and 1999 National Survey of America's Families
managing and maintaining a public database with over 900 variables on state
social policies, programs, and family well-being
assisting in the development of public use files and a windows-based software
program to allow users to independently research data from the National Survey
of America's Families
assisting the director by coordinating projects with consultants and partner
organizations, participating in data and research quality control activities,
contributing to development of the project's website, compiling and
disseminating a monthly newsletter of project accomplishments, responding to
241
public information requests, supporting junior Center staff, and organizing
seminars.
• Conducted cross-cutting and topic specific research on various topics relating to
the safety net for low-income people, including indicators of well-being by race
and ethnicity, health policies in Alabama (a project focal state), and affordability
of housing.
Senior Policy Researcher, Child Health Policy Institute, Child Health Unit,
Department of Paediatrics and Child Health, University of Cape Town, Cape Town,
South Africa. July 1995-September 1999.
• Conducted primary research on:
the epidemiology of firearm injuries in Cape Town children and youth during
1992-1996, and recommendations for policies and programs
government spending on child health and nutrition
mass immunization campaigns and their implications for South Africa
an historical review of policies relating to child health in South Africa
policies and programs relating to mental handicap in South Africa.
• Worked collaboratively with the national Department of Health and provincial
maternal, child and women's health (MCWH) managers to:
develop an intersectoral National Program of Action for Children in South
Africa
develop a national plan to address the priority health needs of children under six
years
assess MCWH services, programs and needs in provinces
develop provincial policy frameworks for MCWH.
• Contributed to evaluative research studies on:
the Primary School Nutrition Program, a priority national program to address
the nutrition, health, and educational needs of school aged children in South
Africa
the policy to provide free health care for pregnant women and children under six
in South Africa, also a priority national program
the quality of service provision rendered at the primary level in South Africa.
• Co-convened national policy roundtable workshops on:
screening for developmental disability in the pre-school population
an intersectoral policy for school health.
• Developed a distance learning module on 'Health and development' for the Master
of Philosophy in Maternal and Child Health, Department of Paediatrics and Child
Health, University of Cape Town. The module aims to contribute to the learner's
understanding of social and economic developments as determinants of health, the
concept of primary health care, and the importance of health promotion.
• Supported the development of a rural community-based and integrated nutrition
program.
• Contributed to MCH News (an international newsletter with a readership of over
5000 throughout southern Africa) on national and provincial policies and
242
programs, as well as the development of short factsheets on issues such as
nutrition, infectious diseases, and children with special needs.
• Provided technical assistance to a district health committee to plan for school
health (including assessment of needs, and strategic planning for action).
• Other activities included: securing grant funding for the Child Health Policy
Institute and other projects; networking on child health; providing presentations,
lectures and submissions to roleplayers about child health policy issues;
supervising and supporting junior research staff, and editing and preparing reports
for publication.
Research Program Coordinator, Child and Adolescent Health Policy Center, The
Johns Hopkins University, School of Hygiene and Public Health, Baltimore, MD.
December 1993-June 1995.
•
•
Co-authored:
two monographs designed to assist states and communities in their systems
development activities by providing an operational framework for the concepts
incorporated in the federal definition of 'primary care for children and
adolescents'
a guide to assist community-based planners in assessing the status of current
activities and in developing strategic planning goals, objectives and program
initiatives required for primary care system development
a policy research brief on school-based and school-linked health centers in the
context of improved primary care for children and adolescents
a review of the literature and measurement strategies related to key principles
in development of systems of care for children and youth.
Provided ongoing support to the Center Director through activities such as
scheduling, organizing and preparing minutes of meetings; assisting in
researching and developing project reports; conference planning; managing the
Center's child health reference database; preparing a resource list of gray literature
relating to primary care and children; maintaining communications with state and
federal liaisons; responding to information requests; preparing Center products for
publication, presentation and dissemination, and attending meetings and
conferences relevant to maternal, child and adolescent health policy.
Research Assistant, Child and Adolescent Health Policy Center, The Johns Hopkins
University, School of Hygiene and Public Health, Baltimore, MD. July 1993November 1993.
• Co-authored a report on Region III state experiences using a primary care
assessment tool and a report on interagency task force development and
management based on the activities of the Arizona Children's Primary Health Care
Task Force.
• Examined state Title V (Maternal and Child Health Services) Block Grant
applications to evaluate child health needs assessments, state programmatic
responses and resource allocations.
243
Primary Care Intern, Office of Women's and Children's Health, Arizona
Department of Health Services, Phoenix, AZ. July 1992-July 1993.
•
•
•
•
•
Constructed a situational analysis of primary health care of Arizona children aged
0-21 years.
Planned and facilitated Arizona Children's Primary Health Care Task Force
meetings and workgroup sessions.
Assisted in the development of state level, community level, and facility/program
level primary care assessment questionnaires.
Wrote a final report on Task Force activities and recommendations for system
development.
Supported various activities of the Primary Care Program within the Office of
Women's and Children's Health, Arizona Department of Health Services.
Research Assistant, Department of Maternal and Child Health, The Johns Hopkins
University School of Hygiene and Public Health, Baltimore, MD. September 1991June 1992.
•
Developed database codebooks and documentation for clinic questionnaires
relating to a study of domestic violence. Worked with SPSS/PC Data Entry,
Wordperfect, and Harvard Graphics.
Intern, National Center for Education in Maternal and Child Health, Georgetown
University, Washington, DC. June 1990-August 1991.
•
•
Created a resource guide for locating national and local services for and
information on children with special health care needs and a resource guide for
locating patient education materials on maternal and child health issues.
Responded to information requests from health professionals and the public.
PEER-REVIEWED PUBLICATIONS
Tlebere P, Jackson D, Loveday M, Matizirofa L, Mbombo N, Doherty T, Wigton A,
Treger L & Chopra M (2007) Community-based situation analysis of maternal and
neonatal care in South Africa to explore factors that impact utilization of maternal
health services. Journal of Midwifery and Women's Health, 52(4): 342-350.
Bishai D, McQuestion M, Chaudhry R & Wigton A (2006) The costs of scaling up
vaccination in the world's poorest countries, Health Affairs, 25(2): 348-356.
Wigton A (1998) Firearm related injuries and deaths among children and youth in Cape
Town: 1992-1996. South African Medical Journal, 89(4): 407-10.
Wigton A, Shung King M & Adnams C (1997) Child mental handicap: related policies
in the new South Africa, Southern African Journal of Child and Adolescent Mental
Health, 9(1), 44-56.
244
Santelli J, Morreale M, Wigton A & Grason H (1996) School health centers and
primary care for adolescents: a review of the literature. Journal of Adolescent
Health, 18: 357-366.
OTHER PUBLICATIONS
Guyer B & Wigton A (2005) Child health: an evaluation of the last century. In: Cosby
AG, Greenberg RE, Southward LH & Weitzman M (Eds) About Children. Elk
Grove Village, IL: American Academy of Pediatrics.
Jackson D, Loveday M, Doherty T, Mbombo N, Wigton A, Matizirofa L, et al (2005)
Community Based Situation Analysis: Maternal and Neonatal Follow-up Care.
Durban: Health Systems Trust.
Ormond BA & Wigton A (March 2002) Health Policy for Low-Income People in
Alabama. Washington, DC: Urban Institute.
Finegold K, Wigton A, Bruen BK, Staveteig S & Hepner M (2001) Expansion of
Healthy Families: Design Issues and Marginal Tax Rates. Oakland, CA: Medi-Cal
Institute.
Staveteig S, Finegold K, Wigton A, Bruen BK & Hepner M (2001) How Will the
Proposed Expansion of Healthy Families Change Work and Marriage Incentives
for California Parents? Oakland, CA: Medi-Cal Institute.
Flisher AJ, Cloete K, Johnson B, Wigton A, Adams R & Joshua P (2000) Health
promoting schools: lessons from the Avondale Primary School. In: Donald D,
Dawes A & Louw J (Eds) Addressing Childhood Adversity. Cape Town: University
of Cape Town.
McCullough-Harlin R, Russell B, Safir A, Scheuren F, Wigton A, Zhang H, Nooter D,
Cohen E & Smith W (2000) 1997 NSAF MKA Public Use File Documentation and
Codebook with Undercount-Adjusted Weights. National Survey of America's
Families Methodology Series. Washington, DC: Urban Institute.
McCullough-Harlin R, Russell B, Safir A, Scheuren F, Wigton A, Zhang H, Nooter D,
Walter E & Smith W (2000) 1997 NSAF Non-MKA (Other Adult) Public Use File
Documentation and Codebook with Undercount-Adjusted Weights. National Survey
of America's Families Methodology Series. Washington, DC: Urban Institute.
Staveteig S & Wigton A (October 2000) Key findings by race and ethnicity. Snapshots
of America's Families II: A View of the Nation and 13 States from the National
Survey of America's Families. Washington, DC: Urban Institute.
Staveteig S & Wigton A (January 2000) Racial and Ethnic Disparities: Key Findings
from the National Survey of America's Families. Washington, DC: Urban Institute.
Wigton A, Scheuren F, Wenck S, Zhang H, Nooter D & Smith W (2000) 1997 NSAF
Child Public Use File Documentation and Codebook with Undercount-Adjusted
Weights. National Survey of America's Families Methodology Series. Washington,
DC: Urban Institute.
Wigton A, Scheuren F, Wenck S, Zhang H, Cohen E & Smith W (2000) 1997 NSAF
Non-MKA (Other Adult) Public Use File Documentation and Codebook with
Undercount-Adjusted Weights. National Survey of America's Families
Methodology Series. Washington, DC: Urban Institute.
245
Wigton A, Scheuren F, Wenck S, Fan J, & Smith W (2000) 1997 NSAF MKA Public
Use File Documentation and Codebook with Undercount-Adjusted Weights.
National Survey of America's Families Methodology Series. Washington, DC:
Urban Institute.
Wigton A & D'Orio D (1999) Housing Hardship. Snapshots of America's Families.
Washington, DC: Urban Institute.
Wigton A, Scheuren F, Wenck S, Fan J, Parker A & Smith W (1999) 1997 NSAF NonMKA (Other Adult) Public Use File Documentation and Codebook. National
Survey of America's Families Methodology Series. Washington, DC: Urban
Institute.
Wigton A, Scheuren F, Wenck S, Zhang H, Nooter D & Smith W (1999) 1997 NSAF
Child Public Use File Documentation and Codebook. National Survey of America's
Families Methodology Series. Washington, DC: Urban Institute.
Wigton A (1998) Firearm-related injuries in Cape Town children and youth: 19921996. Pretoria: Medical Research Council.
Wigton A (1998). Figures about firearms: what are the facts? South African Medical
Journal, 89(4): 396.
Wigton A (1998) An historical review of child health policies in South Africa: 1910 —
1998. Cape Town: Child Health Policy Institute.
Wigton A & Abrahams E (1998) How to host a policy workshop. Cape Town: Child
Health Policy Institute.
Wigton A & Small J (1998) Health and Development. Five-week module for distance
learning Master of Philosophy (MPhil) degree in maternal and child health,
University of Cape Town.
Wigton A, Makan B & McCoy D (1997) Health and nutrition. In Robinson S &
Biersteker L (Eds) First Call: The South African Children's Budget. Cape Town:
Institute for Democracy in South Africa.
Abrahams E, Wigton A & deJong R (1997) Workshop on an integrated policy for
school health: Discussion document. Cape Town: Child Health Policy Institute.
Hendricks M, Wigton A, Malek E & Dhansay A (1997) Nutrition interventions for
women and preschool children in South Africa. Durban: Health Systems Trust.
Hofman K& Wigton A (Eds) (1997) Workshop on screening for developmental
disabilities in the preschool population: Proceedings. Cape Town: Child Health
Policy Institute.
Jacobs M, Wigton A, Makhanya N & Ngcobo B (1997) Maternal, child and women's
health. In Barron P (Ed). South African Health Review 1997. Durban: Health
Systems Trust.
McCoy D, Barron P & Wigton A (Eds) (1997) Evaluation of the National Primary
School Nutrition Programme. Durban: Health Systems Trust.
Shung King M, Wigton A et al (1997) AAA Award for advertising excellence to Purity
baby food — Questioning the ethics of advertising. South African Journal of Public
Health, 87(8): 1056.
Wigton A (1997) Provincial MCWH profiles: 1996-97. Cape Town: Child Health
Policy Institute.
246
(1997) Consensus statement on screening for developmental disabilities in the
preschool population, South African Journal of Occupational Therapy, 27(1), 1518.
National Programme of Action Steering Committee (1996) Discussion Document: A
National Programme of Action for Children in South Africa. Pretoria: Department
of Health.
National Programme of Action Steering Committee (1996) Framework: A National
Programme of Action for Children in South Africa. Pretoria: Department of Health.
Wigton A, Hussey G & Fransman D (1996) Child Health Policy Research Brief: An
Analysis of Mass Immunisation Campaigns: Implications for South Africa. Cape
Town: Child Health Policy Institute.
Wigton A, Hussey G, Fransman D, Kirigia J & Makan B (1996) The winter 1996 mass
immunisation campaign: is it the best strategy for South Africa at this time? South
African Medical Journal, 86(7): 794-795.
Grason H & Wigton A (1995) Review of the Literature and Measurement Strategies
Related to Key Principles in Development of Systems of Care for Children and
Youth. Washington, DC: Health Systems Research, Inc.
Santelli J, Morreale M, Wigton A & Grason H (1995) MCH Policy Research BriefImproving Access to Primary Care for Adolescents: School Health Centers as a
Service Delivery Strategy. Baltimore: The Johns Hopkins University.
Wigton A & Grason H (1995) Child Health Systems Primary Care Assessment:
Community Self-Assessment Guide. Baltimore: The Johns Hopkins University.
Wigton A, Grason H, & Cassady C (1994) Assessing Primary Care for Children: Field
Test Experiences in Four States. A Strategy Brief. Baltimore: The Johns Hopkins
University.
Wigton A, Grason H, Cassady C, Pearson J, & Cooper D (1994) Children's Primary
Health Care Planning in Arizona. A Strategy Brief. Baltimore: The Johns Hopkins
University.
(1993) Primary Care System Development: A Future for Arizona's Children: A Report
of the Activities of the Arizona Children's Primary Health Care Task Force.
Phoenix: Arizona Department of Health Services.
Pickett O, Wigton A & Cole E (1991) Patient Education Materials: A Resource Guide.
Washington, DC: National Center for Education in Maternal and Child Health.
CONFERENCE PRESENTATIONS
Sharkey A, Cele, E, Nzimande G, Mbenenge P, Jackson D, Chopra M & Doherty T
(June 2007) 'A Pilot Study Using Social Autopsy As An Innovative Approach To
Understanding Factors Associated With Infant Death.' Third South African AIDS
Conference, Durban, South Africa.
Bishai D, McQuestion M, Chaudhry R & Wigton A (July 2005) 'The Economics of
Scaling Up Vaccination Coverage: Cost Data from Financial Sustainability Plans.'
Fifth World International Health Economics Association Congress. Barcelona,
Spain.
247
Gruskin S, Tarantola D, Ahmed S & Wigton A (July 2004) 'HIV/AIDS and Human
Rights Indicators: Approaches for Application.' XV International AIDS
Conference. Bankok, Thailand.
Scheuren F & Wigton A (Nov 2000) 'The National Survey of America's Families:
Methods, Tools, and Applicability.' Association of Public Policy and Management
Fall Research Conference, Seattle, WA.
Wigton A (June 2000) 'The NSAF Tabulator: A Resource Allowing Independent
Research on the National Survey of America's Families.' Administration for
Children and Families' Annual Welfare Reform Evaluation Conference.
Washington, DC.
Wigton A (Oct 1999) 'Data resources available from Assessing the New Federalism.'
Association of Public Data Users. Alexandria, VA.
Wigton A (Feb 1999) 'Snapshots of America's families: Key findings from the
National Survey of America's Families.' National Association of Counties Annual
Conference. Washington, DC.
Wigton A & Latief Z (Feb 1998) 'Firearm injuries in Cape Town children and youth,
1992-1996.' South African Paediatric Surgery and Paediatric Medicine
International Congress. Cape Town.
Wigton A & Cloete K (Sept 1996) 'A model for school health planning and
implementation: The Mitchells Plain experience.' Conference of the Pan African
Federation of MCH. Johannesburg.
Wigton A, Hussey G & Fransman D (Sept 1996) 'An analysis of mass immunisation
campaigns: Implications for South Africa.' Conference of the Pan African
Federation of MCH. Johannesburg.
Wigton A & McCoy D (Sept 1996) 'The conventional arms trade: A response from the
health sector is needed.' Conference of the Pan African Federation of MCH.
Johannesburg.
Pearson J, Cooper D & Wigton A (Oct 1993) 'Primary care system development: A
future for Arizona's children.' American Public Health Association Annual
Meeting. San Francisco.
248