Palliative care for people living with HIV/AIDS in Uganda

383 Pages·2017·17.12 MB·English

by  Christine Middleton

Too, Wesley (2011) Palliative care for people living with
HIV/AIDS in Uganda: investigation of patients and
caregivers' outcome and professional perspectives. PhD
thesis, University of Nottingham.
Access from the University of Nottingham repository:
http://eprints.nottingham.ac.uk/14296/1/555637.pdf
Copyright and reuse:
The Nottingham ePrints service makes this work by researchers of the University of
Nottingham available open access under the following conditions.
This article is made available under the University of Nottingham End User licence and may
be reused according to the conditions of the licence. For more details see:
http://eprints.nottingham.ac.uk/end_user_agreement.pdf
For more information, please contact
Palliative Care for People Living with HIV/AIDS in Uganda: An
Investigation of Patients and Caregivers' Outcome and Professional
Perspectives
By
Wesley Too, BSe Nursing (Hons), MPH
Thesis submitted to The University of Nottingham for the degree of Doctor of
Philosophy
©October 2011
ABSTRACT
Background: Although antiretroviral treatment is expanding in sub-Saharan Africa,
the World Health Organization advocates for integration of palliative care with
HAAR T because pain, other distressing symptoms and complex psychosocial
challenges persist throughout the HIV trajectory. Palliative care improves the outcome
for patients with HIV and may complement antiretroviral treatment by increasing
adherence through better management of side effects from the treatment, providing
patient and family-centred holistic care, and giving end-of-life care when necessary.
However, integrating what have become two disciplines is challenging.
Aim: To study the implications for palliative care provision in the context of changing
policy to universal access to HAART for people living with advanced AIDS (PLWA)
in Uganda. Research questions addressed in the study included:
1. How do patients with advanced AIDS (stage III and IV) and with palliative
care needs and their families experience care delivery and receipt over a period
of8 weeks?
2. How is the morphine roll-out programme among advanced AIDS patients
operationalized in Uganda?
3. What are the challenges faced by health care workers involved in delivery and
implementation of integrated palliative care for patients with advanced AIDS?
4. What are the views of key opinion leaders on development of palliative care
policies in Uganda?
Methods: A mixed methods approach was employed. The study comprised of three
phases.
In phase one, a consecutive sample of 30 newly enrolled patients advanced AIDS
(stage III & IV) and their carers were recruited at Hospice Africa Uganda and
followed up for 8 weeks. Qualitative interviews were conducted with patients and
their carers at one time point and an outcome measure using African Palliative Care
Association-Palliative Outcome Scale (APCA-POS) was used to assess changes in
their experiences over 8 weeks, following access to palliative care. In phase two, 10
palliative care staff members participated in individual interviews and one focus group
to explore the challenges they faced in delivering services to patients. Phase three
explored, by the use of interviews with 7 key stakeholders, the broader context of
palliative care policy development and opinions about key priorities for the future.
Findings: Out of 30 patients, 14 were male and 16 were female. They ranged in age
from 18-60 years. The majority of patients were bed-ridden and experienced
distressing symptoms related to advanced AIDS and AIDS-defining cancers which
necessitated timely palliative care intervention. The key findings of the study relate to
the range of physical symptoms experienced by patients and the psychosocial
challenges of disclosure and stigma encountered by patients and their families against
a backdrop of profound poverty. Palliative care staff indicated two categories which
broadly covered the challenges of palliative care delivery to PLWAin Uganda:
service-linked and provider-linked challenges. Palliative health care staff and key
stakeholders identified strategies to respond to palliative care needs for PLWA across
four dimensions: a) partnerships or networking together with stakeholders; b)
improving palliative care education; c) raising awareness of palliative care among
communities and health care workers; d) advocacy and policies which support and
strengthen initiation and expansion of palliative care services to PLWA, including the
availability of morphine.
Conclusion: The study shows the paramount importance of drawing on patients' and
carers' experiences and concerns to shape models of African palliative care. Both
palliative care staff and key informants' perspectives highlight successes, barriers and
important lessons for palliative care service delivery in Uganda. These lessons have
several implications across the dimensions of practice, education, policy and research.
Palliative care staff need to work with several key players or stakeholders to address
the many psychosocial issues affecting PLWA including support during treatment.
The study indicates the need to translate government policies on palliative care into
action.
ii
ACKNOWLEDGMENTS
Thanks to God Almighty who blessed me with an opportunity and guidance to carry
out this research. I thank God for giving me the strength and guidance I needed at
each stage of my work. There are many people who have contributed to the
completion of this thesis. It is pleasure to thank all of them.
It is difficult to overstate my gratitude to my supervisors. This thesis would not have
been possible if it were not for their constant guidance and invaluable support
throughout my study at The University of Nottingham. First and foremost, I am
deeply indebted to my supervisor: Prof Jane Seymour for her enthusiasm, inspiration
and great support throughout and efforts in providing critical comments which not
only stimulated my intrinsic motivation to work hard but also develop my own
intellectual interests as well as research capabilities. lowe my deepest gratitude to her
for effectively mediating timely feedback and providing excellent environment to
share experiences during supervision meetings. I learnt 'how to care' having been a
research student of Prof Jane Seymour. Equally, I am heartily thankful to my co-
supervisors Dr. Michael Watson (The University of Nottingham) and Dr. Richard
Harding (Kings' College London) for their thoughtful insight in providing me with
fruitful and constructive comments at every stage. Special thanks would not be
enough for their patience, time and views in reading my thesis from the earlier version
of drafts to date.
This thesis would not have been possible if it were not for participation of PLWA and
their family members. For their acceptance, time and willingness to share their
account or stories I express my gratitude and admiration.
iii
I would also wish to thank more people who became involved when the project scaled
up. In particular I would like to acknowledge my debt to all staff at Hospice Africa
Uganda. Special thanks for all directors for supporting and facilitating my research in
one way or the other. My sincere gratitude to the founder of Hospice Africa Uganda:
Dr Ann Merriman for her time and support. Special thanks to Dr Jagwe for his useful
advice and support before I started to collect the data. I would like to show my
gratitude to Commission of health in the Ministry of Health, Uganda: Dr Jacinta
Amandua for the tremendous support he gave me. Special thanks to staff at Mulago
National Referral Hospital (palliative care unit) and Cancer Institute. lowe special
gratitude to Dr Lydia Mpanga-Ssebuyira (Infectious Disease Institute-Mulago
National & Referral Hospital), Dr Julia Downing, Dr Faith-Mwangi Powell, Dr.
Dduku at APeA. I would like to show my gratitude to Mrs Elizabeth Ombeva
(faculty staff, Makerere University-Nursing) & Charlotte (Manager, HIV/AIDS at
HAU) for their instrumental support during data collection & translation.
Special thanks to Dr Catrin Evans, Dr Linda East for their role in bridging
international collaborations which finally saw me join this University to study as well
as their encouragement and support throughout my study here. I am indebted to all my
sponsors for their financial support. Special thanks to Aga Khan University-East
Africa and The University of Nottingham, School of Nursing for the scholarships.
Special thanks to my fellow colleagues for their peer reviews, encouragements and
support during my study.
Finally, I would like to thank my dear wife Fancy Too for her patience,
encouragement and moral support. Special thanks to my daughter Favor Cherotich for
her love & support throughout my study. To al1 my sisters, brother, friends and
iv
relatives, many thanks for being there for me and for your love. To all those who were
involved and I have not mentioned their names, please accept my special thanks.
v
TABLE OF CONTENTS
Abstract i
Acknowledgement. .iii
Table of contents , , vi
List of tables .. , x
List of figures, graphs and charts xiii
Definition of terms used , xv
Abbreviations xvi
Publications and presentations xviii
1
1.0 INTRODUCTION
3
1.1 Significance of this research study
5
1.2 Overview of natural course of HIV /AIDS
5
1.3 HIVIAIDS Epidemiological facts: Global, sub-Saharan Africa & Ugandan overview
6
1.3.1 HIV/AIDS estimates in Uganda: Incidence and Prevalence
7
1.4 Treatment of HIVIAIDS (ART & HAART)
9
1.5 Palliative care
9
1.5.1 Definition of palliative care
10
1.5.2 Why do we need palliative care among patients with advanced AIDS?
II
1.5.3 Palliative care policy and development in Uganda
IS
1.6 Uganda: Health care system
IS
1.6.1 Overview of Uganda
16
1.6.2 General context of health care provision
16
1.6.2.1 Background
18
1.6.2.2 Palliative care service provision in Uganda
20
1.6.2.3 How HAU delivers its services: models of palliative care delivery
24
1.6.2.4 Status of integration of palliative care
26
2.0 A REVIEW OF RESEARCH TO THE PALLIATIVE CARE OF PLWA
26
2.1 Introduction
26
2.2 Palliative care development in Africa: An overview
28
2.2.1 A public Health Approach for palliative care provision
31
2.3 Review of the research relating to palliative care for PLWA
32
2.3.1 Results of literature review
37
2.4 Conclusion
39
3.0 METHODOLOGY
39
3.1 Introduction
40
3.2 Choosing the research methodology: A rationale for methodology
41
3.3 Study design
45
3.4 Phase I study
vi
3.4.1 Introduction 45
3.4.2 Study Setting 45
3.4.3 Sampling Technique and Recruitment of patients 46
3.4.4 Accessing patients with advanced AIDS and caregivers 49
3.4.5 Data Collection 51
3.4.5.1. APCA African POS Tool 51
3.4.5.2 Qualitative Interviews 55
3.4.5.3 The process of interviewing 57
3.4.5.4 Interviewing participants: experiences of the process 59
3.4.5.5 Joint and individual interviewing in the context of HIV/AIDS 66
3.4.5.6 Field-Notes 66
3.4.5.7 Translation 67
3.4.5.8 Follow-up procedures 70
3.4.6 Analysis of data 70
3.4.6.1 Quantitative analysis: Data analysis and interpretation of POS data 70
3.5 Phase II study 73
3.5.1 Study setting 73
3.5.2. Sampling and Recruitment of palliative care staff 73
3.5.3 Individual interviews 76
3.5.4 Focus group discussion 71
3.5.4.1 How focus group discussion were conducted 79
3.6 Phase III study 82
3.6.1 Introduction 82
3.6.2 Study setting 82
3.6.3 Sampling & recruitment process 87
3.6.3 Qualitative data analysis 87
3.6.3.1 Individual interviews: qualitative analysis 87
3.6.3.2 Interviews with key stakeholders & focus group 89
3.6.4 Validity & Reliability: Mixed methods research 90
3.6.4.1 Quantitative perspective: validity & reliability 91
3.6.4.2 Rigor & trustworthiness: Qualitative perspective 93
3.7 Ethical issues 97
3.8 Dissemination 98
4.0 INTRODUCTION 99
99
4.1 Agaba
100
4.2 Ddamba
102
4.3 Kibuuka
4.4 Mangeni
103
vii
4.5 Musoke 104
4.6 Nabukwasi 106
4.7 Nankoma 107
4.S Ssematimba lOS
4.9 Kisomose 1I0
4.10 Mugume III
4.11 Nabulungi 112
4.12 Nalongo 113
4.13 Salongo 114
4.14 Ssemwanga 115
4.15 Zilabamuzale 1I6
4.16 Mr Amandua 1I7
4.17 Gwandoya 1I8
4.18 Lutalo 119
4.19 Mr. Kizza 121
4.20 Nabirye 122
4.21 Nafuna 123
4.220kello 124
4.23 Masani 125
4.24 Adongo 126
4.25 Mugagga 128
4.26 Musoke 129
4.27 Nakanwagi 130
4.28 Namugera . 131
4.29 Ssempala 132
4.30 Wandira 132
5.0 EXPERIENCES OF LIVING WITH ADVANCED AIDS 134
5.1 Introduction 134
5.2 Social Context 136
5.3 Living with advanced aids stage III & IV 139
5.3.1 Patients' experiences of pain and symptoms 139
5.3.2 Experiences with HAART 142
5.3.3 Psychosocial issues 145
5.3.3.1 Disclosure 146
5.3.3.2 HIV/AIDS and stigma 152
5.3.4 Spiritual dimension 159
5.3.4.1 Role of spiritual care 159
5.4 Care giving experiences 161
5.4.1 Introduction 161
5.4.2 Psychosocial issues: Caregiver's perspectives 162
5.4.2.1 Lack of support and resources 162
5.4.2.2 Fear of contracting HIV/AIDS 165
5.4.2.3 Emotional difficulties 167
5.4.2.4 Experiences of support by and for HIV/AIDS partner 169
5.4.2.5 Anxiety in the last days of life 173
viii ..