living with sickle cell and depression in lagos, nigeria

329 Pages·2016·1.46 MB·English

LIVING WITH SICKLE CELL AND
DEPRESSION IN LAGOS, NIGERIA

by

Bolanle Adeyemi Ola

A dissertation presented in the School of Applied Social Sciences, De
Montfort
University, Leicester towards the degree of:

DOCTOR OF PHILOSOPHY
IN APPLIED SOCIAL SCIENCES

DE MONTFORT UNIVERSITY
School of Applied Social Sciences
Faculty of Health and Life Sciences

January, 2016

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ABSTRACT
Sickle cell disease (SCD) and depression are each major public health issues globally.
Nigeria currently has the largest proportion of people with SCD worldwide, with up to
150,000 annual births. This study highlights the limitations of previous studies, which only
utilize the biomedical model in explaining SCD, and which pay insufficient attention to the
lived experiences of people with SCD. Extant literature reports strong associations between
SCD and depression, and locates the problem ‘only’ in terms of disease severity, levels of
service utilization or alleged psychological maladjustment to SCD condition. Biomedical
research tends to treat stigma as a predicament that automatically correlates with SCD.
Data collected was guided by a modified three-staged theoretical framework derived from
Arthur Kleinman, with the use of questionnaires (incorporating Patient Health
Questionnaire) to describe depression in persons with SCD; 15 in-depth interviews to
explore the illness experience of SCD, and a series of six focus groups to examine
depression and stigma in SCD as a form of ‘societal sickness’. In the first stage,
questionnaires were administered to 103 outpatients at an SCD clinic in Lagos, Nigeria, and
findings revealed an association of depression with age, and severity of SCD as indicated
by symptoms such as leg ulcers. The first stage enabled those with moderate depression to
be identified and invited into the subsequent stages (two and three) of the research.
In the second stage, fifteen in-depth interviews with adults living with SCD were
conducted and analysed using interpretive phenomenological analysis (IPA), also drawing
on the influences of Herbert Blumer and Erving Goffman. Testimonies suggested that
people with SCD face overwhelmingly negative criticisms from a wide range of significant
others, including close family members; that the discrimination they face arises not from
their condition per se but from the societal norms and expectation that they are assumed to
break; and that they themselves identify pathways from the negative experience they endure
to their own depression and mental distress.
In the third stage, a series of three focus groups, each with five participants, found that
people with SCD began to reject negative labels, identify challenges in their own terms,
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gain a sense of confidence and identity from their participation in groups, and began to
identify social barriers to their full participation in society that they wished to challenge.
The overall findings of the research suggest that by coming together in groups, people with
SCD themselves suggest that rigorously researched social interventions may be considered
an important adjunct to medical interventions in improving the lives of those living with
SCD in Nigeria and throughout sub-Saharan Africa.

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Table of Contents

Page
Title Page 1
Abstract 3
List of Tables 10
List of Figures 11
Acknowledgements 12
Chapter

One: Introduction 13

Two: Literature Review 20
Introduction
Sickle cell disease
Sickle cell epidemiology
Sickle cell disease pathophysiology and clinical symptoms
Depression
Depression and SCD
Pain and depression in SCD
Depression and other physical markers of severity
Depression and psychosocial factors
Depression and neurological complications
Sociology of Sickle Cell Disease as a Chronic Disease
Stigma
Stigma and SCD
Social model of disability and SCD
Conclusion

Three: Methods 55
Research Philosophy
Research Strategy
Research paradigm
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Positivistic research strategies
Phenomenological Approaches
Idiographic inquiry as part of IPA
Research participants
Rules of eligibility in the study
Ethical Issues
Access to participants:
Anonymity and confidentiality:
Avoiding harm
Health and Safety of Researcher:
Safe storage of data
Methodology
Reciprocity in research
Finding and recruiting research participants
Establishing rapport with research participants
Self-Disclosure
Reciprocity
Data Analyses
Critical evaluation of the research process
Reflections on the research strategy
Reflections on research methods
Reflections on analysis
Reflexivity
Credibility
Dependability
Transferability
Conclusion

Four: Findings 1 – Results of Quantitative Data 110
Introduction
Socio-demographic characteristics of the participants
Illness related variables
Prevalence of Depression
Comparison of those with SCD who are depressed with those with SCD
who are not depressed according to PHQ-9 on socio-demographic dimensions
Conclusion

Five: Findings 2 – Results of In-Depth Interviews 122
Introduction
The Study Sample: Socio-demographic characteristics of respondents
‘Pen-portrait’ of the Fifteen Respondents
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Themes
Theme I: Experiencing Disapproval (Judgement)
Sub-themes
Disapproval experienced from members of Family
Disapproval experienced from friends
Disapproval experienced in the neighbourhood
Disapproval experienced from Teachers/Peers in school setting
Disapproval experienced in the hospital setting
Disapproval experienced from others in the community
Theme II: Experience of disbeliefs about pain from significant others
Sub-themes
Experience of disbelief about pain from family
Experience of disbelief about pain from professional workers
Experience of disbelief about pain from community members
Theme III: Experience of stigma
Sub-themes
Physical appearance
Economic independence
Physical capability/capacity
We don’t live long enough
Policing of behaviour by others
Theme IV: I am a different person
Sub-themes
Difference in terms of strength
Difference in terms of sickness/tiredness
Difference in terms of capability
Theme V: Thinking and talking about death
Sub-themes
Others make us think of death
We experience the fear of death
Theme VI: We wished we were dead
Sub-themes
Thoughts of suicide
Self-conscious risky behaviours
Attempts at suicide
Theme VII: Coping with SCD
Sub-themes
Being careful and staying within your limits
Being careful and frugal with money
Conclusion

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Six: Findings 3: Results of Focus Group Discussions 177
Introduction
The profile of the participants in the focus groups
Theme I: Survival and success reaffirming positive identity of SCD
Sub-themes
Survival as reaffirming positive identity of SCD
Pain experiences reaffirm positive identity in comparison to others
Pain as a catalyst for positive relationships
Theme II: Being in group provides opportunity for self-disclosure and
encouragement
Sub-themes
Illness sometimes unpredictable
Not alone in the family
Living with SCD as it is in you
Theme III: Group interaction reinforces the view that the problem lies in others
Sub-themes
Problem lies in the society too
Problem lies in the family
Theme IV: Sharing information that is of possible use to one another
Sub-themes
Sharing information about a clinic with better treatment for SCD
Sharing information about sickle cell club with helpful tips on SCD
management
Sharing information about genuine centers for genotype tests
Sharing information on self-management of pain with social interaction
Theme V: Discussion of possible mutual support groups
Sub-themes
Looking after others with SCD who lack family support
Look after others with SCD so they do not stress/kill themselves with overly
heroic individual efforts
Providing information to guide parents and protect next generation with
SCD
Support for parents of younger ones with SCD
Support for the younger ones with SCD
Theme VI: Challenging negative attitudes/reactions/labels
Sub-themes
Challenging the attitude of others who feel they have the right to pass
opinions on those living with SCD
Developing the resilience to challenge negative labels
Negative attitude/reaction of others as a form of symbolic violence against
the person with SCD
Challenge to a nurse who projected a negative image of people with SCD by
use of negative labels
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Theme VII: Challenging counterproductive strategies
Sub-themes
Debating stress management with house help
Debating the management of pain episodes
Challenging counterproductive strategies of survival in society
Debating merit of relationship with AS or SS persons
Theme VIII: Standing up for SCD
Sub-themes
They are prepared to talk themselves about sickle cell in public
Persons with SCD should represent themselves
Theme IX: Canvassing for support from significant others
Sub-themes
Strategy to have NGOs to support them
Educating significant others to be better advocates for SCD
Educating other regular community leaders (teachers, religious leaders etc.)
about SCD
Theme X: Areas of interest to the group
Sub-themes
Campaign for Genotype test
Accessing/using the media for campaigns
Putting many stories of SCD into the public domain because not all are the
same
Reporting mechanism for those who abuse people with SCD and support
mechanism for people with SCD
Possible Strategies to achieve reasonable adjustments in
schools/employment
Strategies for reasonable adjustment in the hospitals
Debated microfinance and cooperative approaches to finance
Conclusion

Seven: Discussion 232
Introduction
Disease Context of SCD
Illness Experience of SCD
Societal Sickness of SCD
Conclusion

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Eight: Conclusion 262
Introduction
Significant Contributions in This Study
Original Contributions to Knowledge
Areas for Future Research

List of References 281

List of Appendices

I. Information Shets 302
I. Consent Forms 310
III. Patient Health Questionnaire-9 313

IV. Topic guide for In-depth Interviews 315

V. Topic guide for Focus Group Discussions 318

VI. Flow Chart of Participants 320

List of Tables 9

Table 3.1: the IPA iterative and inductive analytical cycle 95
Table 3.2: Illustrative examples of emergence of themes and sub-themes 98
with key words

Table 3.3 Example of Recurrent Theme/sub-theme 99

Table 4.1a: Socio-demographic variables of all respondents 112

Table 4.1b: Socio-demographic variables of all respondents 113

Table 4.1c: Socio-demographic variables of all respondents 114

Table 4.1d: Socio-demographic variables of all respondents 115

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