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Palliative Care for People Living with HIV/AIDS in Uganda: an Investigation of Patients and Caregivers' Outcome and Professional Perspectives

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Palliative Care for People Living with HIV/AIDS in Uganda: an Investigation of Patients and Caregivers' Outcome and Professional Perspectives 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 (PL WA) 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 PL WA 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 1.0 INTRODUCTION 1 1.1 Significance of this research study 3 1.2 Overview of natural course of HIV /AIDS 5 1.3 HIVIAIDS Epidemiological facts: Global, sub-Saharan Africa & Ugandan overview 5 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 2.0 A REVIEW OF RESEARCH TO THE PALLIATIVE CARE OF PLWA 26 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 3.0 METHODOLOGY 39 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.
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