i Thesis December, 2014 The Experiences of Caregivers Looking after a Child living with HIV and ...

382 Pages·2015·2.38 MB·English

The Experiences of Caregivers Looking after a Child living with HIV and AIDS
in rural Malawi

A

Thesis

for

Doctor of Philosophy in Nursing (PhD)

by

Mandayachepa Chriford Nyando

Cardiff University

School of Health Care Sciences (SOHCS)

Year December, 2014

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Thesis December, 2014
Summary
The aim of this study was to examine how caregivers manage their day-to-day living
and health care needs, care for themselves and their sick children living with HIV and
AIDS in rural Malawi. The study used a longitudinal descriptive qualitative research
design, through the “lens” of a narrative approach as a theoretical framework to
explore the experiences of caregivers looking after a child living with HIV and AIDS
in rural Malawi. In-depth Interviews (IDIs) with women caregivers (n=20) recruited
from Mponela Rural Hospital catchment area were conducted and all twenty women
caregivers participated in in-depth interviews. Direct Observations (DOs) of the
environment where interviews were conducted and at the local Mponela Rural
Hospital were used to explore the primary care and support available for these women
caregivers and their children. Data were analysed manually using thematic analysis of
the narrative accounts. An in-depth case study of one caregiver’s experience, using
narrative analysis, is presented to exemplify some key elements of all the women
caregivers’ experiences. This approach enables the reader to better understand how
women constructed their stories in their own particular cultural context.
Results identified a number of key issues facing women caregivers of children living
with HIV and AIDS in rural Malawi. Key issues include: Caring responsibilities- the
caring responsibilities were extensive and intensive. Disclosure and stigma- women
caregivers were selective in their disclosure of HIV and AIDS status. Clinical care
and support – women caregivers accessed only government health institutions.
Invisibility of women caregivers- individual women caregivers were invisible to
many including policy makers. Women’s caregiving services not recognized-
women’s caregiving services were not recognised by policy makers. Challenges faced
by women caregivers-women caregivers had many challenges related to caregiving
services. Gender issues- An important finding was the impact of gender on these
women’s experiences. Highly resilient and motivated-despite the challenges, women
caregivers were resilient and highly motivated.

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Thesis December, 2014
Declaration

I, Mandayachepa Chriford Nyando of Cardiff University School of Health Care
Sciences hereby declare that this thesis for Doctor of Philosophy in Nursing (PhD
Nursing); except where indicated by reference and direct quotation, is my own
investigation work and the views expressed in this work are my own views.

Mandayachepa Chriford Nyando (Researcher)

Signature………………………… Date…………………………………..

Ownership and submission
I, Mandayachepa Chriford Nyando of Cardiff University School Health Care Sciences
hereby also declare that no portion of this thesis has been submitted in substance for
any other degree or award at any school of Cardiff University or any other university
or place of learning, nor is being submitted concurrently in candidature for any degree
or other award other than being submitted to Cardiff University, School of Health
Care Sciences housed at Eastgate House on Newport road in fulfilment for the award
of Doctor of Philosophy in Nursing (PhD in Nursing).

Mandayachepa Chriford Nyando (Researcher)

Signature………………………… Date…………………………………..

Dr. Katie Featherstone (First supervisor)
Signature………………………………… Date…………………………………….

Professor Billie Hunter (Second supervisor)
Signature………………………………..Date……………………………………….
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Thesis December, 2014
Dedication

This thesis is dedicated to my late father Mr. Matthews Nyando who died when I was
6 years old and I do not remember his face. I wish he was alive to be present during
this time around and may his soul rest in peace. And to my two children Jack and
Mwayi for their understanding during the four year period I was far away when they
needed me most.

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Thesis December, 2014
Table of Contents

Content Page
Title page i
Summary ii
Declaration iii
Ownership and submission iii
Dedication iv
Table of Contents v
Acknowledgements xiv
Abstract xv
Chapter 1a: Introduction to thesis 1
Introduction to the thesis 1
Title 1
Motivation for the study 1
Aims and objectives 2
The philosophical frame work 2
Research design, data collection methods, analysis and presentation 2
Thesis overview 3
Chapter 1b: The global emergence and identification of HIV and AIDS 8
Introduction 8
History of HIV and AIDS 8
Stigma, discrimination and political inaction 10
The origins, transmission and classification of HIV 12
Modes of transmission of HIV 13
Mother to child transmission of HIV 13
HIV disease staging and classification 14
Treatment for HIV and AIDS 15
Strategies for the identification and management of people with HIV: counselling and
testing 16
The future of HIV treatment 18
Conclusion 19
Chapter 2: The Impact of HIV and AIDS in Sub-Saharan Africa and Malawi 20
Introduction 20
Global policies 20
HIV and AIDS in Sub-Saharan Africa 22
Countries with close geo-political links to Malawi 24
HIV and AIDS in South Africa 25
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Thesis December, 2014
Mozambique 25
Zambia 26
Causes of the high prevalence rates 27
Poverty and HIV Infection 27
Male circumcision 28
HIV and AIDS-young women and children in Malawi and Zambia 29
Summary of section 30
Malawi 31
Poverty, Social Profiles and Vulnerability in Malawi 32
Policy Response to HIV and AIDS 34
The Malawi Growth and Development Strategy 35
Key issues surrounding the AIDS epidemic in Malawi 37
Human resources issues 37
Gender inequalities issues 38
Conclusion of the chapter 39
Chapter 3: Literature review of caregivers in the context of HIV and AIDS 40
Introduction 40
Literature search methods 41
Electronic search 41
Reference checking from journals and textbooks 42
Searching for additional sources 42
Searchable terms (keywords) 42
Caring for well children: is it women’s work only? 44
Paid and unpaid childcare 44
Child care: balancing acts work and care for working mothers 45
Who should do this work? 46
Caregiving impact on families with children with disabilities or chronic diseases 47
Caregiving and HIV and AIDS 48
Secondary caregivers’ support to primary caregivers 49
Primary caregiving 53
Women caregivers 54
Males as caregivers in their families or communities 55
Unpaid caregiving and the economic and social costs 55
The caregiving role and the personal, social and political value 57
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Thesis December, 2014
The changing caregiving profile in the face of HIV and AIDS 58
A change in the task by primary caregivers 59
Hard to reach and scale-up caregiving services to HIV and AIDS individuals 60
Social incentives and protection for primary caregivers 60
Conclusion of the chapter 62
Chapter 4a: Methodology
Introduction 64
The philosophical theoretical framework 64
Why Narrative analysis theoretical inquiry approach 64
What is narrative analysis 65
Developing descriptive analysis using narrative theoretical framework 68
Antecedents and consequences 68
Sequential Patterns 69
Simplicity, accuracy and generability of sequential patterns 69
Levels of narrative structure 70
The application of levels of narrative structure to this study 73
Individual life experiences through storytelling 77
Interpretations of personal stories 78
Personal narratives as data 79
Individual stories of ill health- the narrative and illness 81
Use of narrative in health and illness 81
Language use in narrative of ill health 82
Examples of studies that used narrative in health related issues 83
Lessons learnt from the three studies 83
The approach for this study and conclusion 84
Chapter 4b: Methods 85
The study 85
The main questions for the study were 85
The most appropriate study design and data collection methods 85
The setting 86
Study sample and sampling method 86
Interviewing a hard to reach population 87
Methods 88
Interviewing: gender issues 88
Interviewing: translation issues 89
The original data collection plan 89
Sample and sampling method 90
Ethics and recruitment 90
Ethics 90
Modelling the ethics process approach 91
Ethical approval 92
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Thesis December, 2014
Confidentiality in the community 92
Approaching key officers and the clinician 92
Confidentiality and recording 93
Hand recorded notes 93
Withdraw from the study 93
Benefits for participation 93
Risks as a result of participation in the study 94
Recruitment process 94
Inclusion and exclusion criteria 94
Enrolment 95
Data collection 96
Generating relevant information for my study 96
Interviews 96
Types of interviews 97
In-depth Interviews (IDIs) 98
Data collection procedures 104
Direct Observations 104
Approach to data analysis 106
Data from in-depth Interviews 107
Analysing and managing data 108
Presentation of the results 111
Ensuring trustworthiness of qualitative research and examining the limitations of the
study 111
Triangulation 111
Verification 112
Developing trust with participants 112
Iterative questioning 113
Debriefing sessions 114
Reflective commentary 114
Limitation of the study 114
Power and the interviewer 115
Language 115
Explanation to participants 116
Gender 116
Gender and language 117
Methodological issues: Field experiences in Malawi 118
Chapter 5a: Case study: The story of Mayi Salima (Pseudonym) 126
Introduction 126
Mayi Salima 126
Life as a single parent 127
Marriage and her husband’s polygamy 129
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Thesis December, 2014
A Polygamous marriage 129
Discovery of HIV and AIDS 131
Her husband becomes ill 131
Discovery: when her child becomes seriously ill 132
Develops the symptoms of full blown AIDS 133
HIV diagnosis of her child 134
Mayi Salima’s discovery of her own HIV status 135
HIV and AIDS disclosure and stigma 135
Informing her biological parents 136
Informing the parents of her late husband 136
Informing the village headman 137
Informing members of her community 138
Issues of stigma 138
The impact of HIV and AIDS 140
The struggle of caring for a child living with HIV and AIDS 140
Poverty and the daily struggle to provide for her family 141
Supporting her family 143
Caring for a child living with HIV and AIDS 144
Monitoring health status: Monitoring and prevention 145
Decision-making to take the child to the hospital 146
Child’s hospital admissions 146
The threat of malnourishment: Food supplements 147
Feeding the sick child 150
Careful food preparation 150
Support from her parents 151
Support from other relatives 152
Support from the church groups 153
Support from friends during hospital admission 154
Other sources of support 155
Support to relieve stress 155
Support from non-governmental organizations 155
The future 156
Mayi Salima’s preferred business 157
Most important things needed to care for the child well 157
A good house (a house that does not leak when it’s raining) 158
Conclusion of the chapter 159
Chapter 5b: Narrative summaries of each woman caregiver 161
Introduction 161
Caring responsibilities 162
Mayi Dowa 162
Mayi Kasangadzi 163
Mayi Machentche 163
Invisible nature of caring 164
Mayi C 164
Mayi Mpanda 2 164
Mayi Mpanda 3 164
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Thesis December, 2014
Mayi Mpanda 166
Mayi Zomba 166
Husbands made decisions 167
Mayi B 167
Mayi F 167
Mayi Kasangadzi 4 168
Mayi Lilongwe 169
Mayi Ntchisi 170
Disclosure and stigma 170
Mayi Kasungu 171
Mayi Lusa 171
Mayi Muyeza 172
Resilience and challenges 172
Mayi Bua 173
Mayi Dedza 173
Mayi Nsanje 174
Conclusion 174
Chapter 6: How women caregivers discover their HIV status and their
experience of the diagnosis 175
Introduction 175
The women caregivers 175
Caregiver’s discovery of HIV and AIDS 176
Husbands and families: decision making about HIV testing 180
Male dominance and their complex life styles in families 192
Conclusion of the chapter 196
Chapter 7: HIV and AIDS disclosure and stigma 197
Introduction 197
Disclosure decisions: Keeping secrets and who to trust? 197
Secrecy, fear and shame 198
Managing disclosure, making judgements and fearing repercussions 200

Happy to disclose, stigma an issue of the past 201
Who they disclosed to 202
Open policy 202
Limited disclosure to immediate family members 203
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Thesis December, 2014