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living with sickle cell and depression in lagos, nigeria PDF

329 Pages·2016·1.46 MB·English
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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 1 2 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, 3 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. 4 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 5 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 6 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 7 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 8 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 9 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 10

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