Functioning, disability and health in people living with HIV on antiretroviral therapy in Rwanda

453 Pages·2014·30.28 MB·English

Functioning, disability and health in people living with
HIV on antiretroviral therapy in Rwanda

Jeanne Nyirankumbuye Kagwiza
A thesis submitted in the fulfilment of the requirements
for the degree of Doctor of Philosophy in the
Physiotherapy Department, Faculty of Community and
Health Science, University of the Western Cape

Supervisors:
Professor Patricia Struthers
Professor Jennifer Jelsma

August 2014

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ABSTRACT
Many people living with the Human Immunodefi ciency Virus (HIV) (PLWH) experience
functional limitations caused by either the HIV infection itself and/or the antiretroviral

treatment. In Rwanda, many PLWH have access to antiretroviral treatment; however, there is

no information about the extent of disability or functional limitations present among PLWH

which might be caused by either the HIV infection or the antiretroviral treatment. In addition,
the service delivery model may well be based on the medical model, rather than the bio-
psychosocial model. As a consequence, PLWH may be receiving medical treatment, but we
do not know whether they need or are receiving rehabilitation within the hospital
environment and support within the community. This study used the bio-psychosocial model
with the International Classification of Functioning, Disability and Health (ICF) as a
theoretical framework.
The study aimed to explore the need for and nature of care that PLWH living in Rwanda
receive from their health care providers using a bio-psychosocial framework. A further aim
was to determine if the Kinyawanda version of the World Health Organisation Disability
Assessment Schedule 2.0 (WHODAS 2.0), which was used to gather the functional data, was
valid within the Rwandan context. A mixed methods approach was used.
A quantitative survey was used to determine the profile and the prevalence of disability
among PLWH, by measuring impairment, activity limitation and participation restriction
amongst PLWH who are also on antiretroviral treatment. In addition the relationship between
functioning and medication was explored. A Kinyarwanda version of the ICF core set of
questions and the WHODAS 2.0 outcome instrument was used. Face-to-face interviews were
conducted among PLWH at 15 selected hospitals representing all provinces in the country.
The final sample size included 502 PLWH. Participants‘ health status showed that the longer
they had HIV and had been on antiretroviral treatment, the more likely they were to have
impairments. Pain (69%) and fatigue (83%) were more prevalent than any other problems
found in all domains measured under impairments. Problems with mobility function (57%)
scored the highest prevalence under activity limitations, and problems in participation/social
functions had the highest prevalence in comparison to the other domains. The mean score of
the different domains were significantly different with participation scoring the highest (46%,
with 100% the worst score rate). Participants experienced problems for approximately half
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the days in every month. Various impairments of body function predicted functional
limitations with regard to activities and the participation/social restriction domains. Energy
and drive and memory functions were predictive of the means scores of all the domains.

The qualitative component used focus group discussions among PLWH on antiretroviral

treatment with associated disabilities, to explore the relationship between the impairments,

functional limitations, participation restrictions and personal and environmental factors. Two

focus group discussions consisting of a total of 16 PLWH with associated disabilities (10
females, six males), were conducted at two hospitals, and purposively selected from among
the fifteen hospitals involved in the survey. The impairments experienced every day,
including a lack of energy, pain, paraesthesia, breathlessness and loss of memory
corroborated the findings of the quantitative survey. These impairments affected their
performance of daily activities and their participation in social life. Participants described the
personal factors that facilitated functioning (such as spiritual beliefs, and positive thinking
about disclosure as a strategy to improve psychological well-being, to overcome internalized
stigma and to create awareness about HIV), or limited functioning (for example internalized
stigma and age), and the social relationship environmental factors that facilitated functioning,
or limited functioning, which included participants‘ relationships with their families, and with
their communities. Participants discussed the influence of the hospital environment and
services (either as a facilitator or a barrier) on their functioning. This included the ARV
(Antiretroviral) clinic and services in the hospital outside the ARV clinic. Participants made
recommendations that could improve service delivery provided to PLWH with associated
disabilities or functional limitations, such as increase in the number of health care providers
including rehabilitation care using a multidisciplinary approach and the establishment of
counselling programmes.

The process of translating the English version of the ICF core set of questions and the
WHODAS 2.0 outcome instrument into Kinyarwanda is documented; it highlights the
problems encountered, whether related to linguistic meaning or to cultural influence. Despite
challenges, particularly with regard to words used for disability and impairment, the
translated versions were found to have appropriate linguistic and cultural meanings, and used
clear and understandable expressions. Additionally, impairments, activity limitations and
participation restrictions that were identified by participants in the focus group discussions
were used to determine content validity. The translated instruments demonstrated good
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content validity. One way ANOVA was used to establish convergent validity of the
WHODAS 2.0 and Cronbach‘s Alpha was calculated to test for internal consistency of the
Impairments Questionnaire and the WHODAS 2.0. The translated instruments demonstrated

good construct validity and good reliability.

In conclusion, the prevalence of disability in PLWH on antiretroviral therapy in Rwanda is

considerable. There were a large range of functional limitations among PLWH associated

with a variety of impairments which cannot be addressed simply by pharmacological medical
management. There is a need to establish interdisciplinary collaboration by a
multidisciplinary team, based on a bio-psychosocial approach, to reinforce referral within the
hospital system. In addition, the use of a bio-psychosocial model, such as that of the ICF
framework, might lead to more holistic assessment and management of these patients.

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DECLARATION

I declare that Functioning, Disability, and health in people living with HIV on antiretroviral
therapy in Rwanda, is my own work, that it has n ot been submitted for any degree or
examination in any other University, and that all the sources I have used or quoted have

been indicated and acknowledged by means of complete references.

Name: Date:

Signed:

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DEDICATION

To my husband Kasongo Wa-Kutuma and our children Kabedi Malaika and Kalala Musomba
for your unwavering support, love, understanding  , and above all, your patience.

To my dearest nephews Malo Shingiro Kahamaile and Maxime Nkiko Kahamaile, for the
cherished memory of your father, my brother, Justin Murego Kahamaile. He will always be
present among us.

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ACKNOWLEDGEMENTS

I would like to express my profound and sincere gratitude to my supervisors, Professor
Patricia Struthers and Professor Jennifer Jelsma.  Your sage guidance, untiring support,
encouragement and motivation throughout this long journey have made a difference in my

appreciation of the academia. Thank you for being always there when I needed you the most.

Your wisdom will continue to be a source of my inspiration.
I would like to acknowledge the Government of Rwanda through the Ministry of Education
for the scholarship. I also thank the African Doctoral Dissertation Research Fellowship for
the award and partial funding for this study. I wish to sincerely thank the former Rector;
Doctor Ndushanbandi Desire and the former Vice Rector of Academic affairs and Research;
Doctor Kabagabo Chantal of the University of Rwanda/College of Medicine and Health
Sciences, former Kigali Health Institute for the support and permission granted for being
away from my job.
I would like to thank Doctor Mumena, the acting head of Ophthalmology department at the
University of Rwanda/College of Medicine and Health Sciences, former Kigali Health
Institute for being there through the last ten months and assisting with the faculty of Allied
health sciences responsibilities. Without your help, perhaps this would have taken another
year. I sincerely thank Doctor Nsanzimana and Doctor Muhayimpundu from the Rwanda
Biomedical Center/Ministry of Health for all the support, and facilitation with data
collection.
I wish to thank my PhD fellows and friends with whom we shared experiences of this
journey; particularly Tumusiime David, Uwimana Jeannine, Kayonga Egide, and
Mfurankunda Pravuda. Thank you for the encouragement and support. I deeply wish to thank
Suzan Bucyanayandi, Zona Koen and Rone Gerber for the special support rendered me.
Special thanks go to all my friends and colleagues for the encouragement and moral support.
My profound thanks to my brothers, sisters, sisters and brothers in law and nieces and
nephews for their love and who have been always there for me and supported me all these
years.
Many thanks to all who have assisted with data collection. Last but not least, my sincere
thanks to all the participants in this study for accepting to share your life experience.
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TABLE OF CONTENTS

ABSTRACT ............................................................. ....................................................................... i
DECLARATION ...................................................... ..................................................................... iv
DEDICATION ......................................................... ...................................................................... v
ACKNOWLEDGEMENTS ............................................................................................................. vi
TABLE OF CONTENTS................................................................................................................ vii
TABLE OF TABLES ..................................................................................................................... xv
TABLE OF FIGURES ................................................................................................................. xvii
ABBREVIATIONS ...................................................................................................................... xix
1 CHAPTER ONE: INTRODUCTION ......................................................................................... 1
1.1 Background .................................................................................................................. 1
1.1.1 HIV in Rwanda ...................................................................................................... 1
1.1.2 PLWH and disability ............................................................................................. 2
1.1.3 PLWH and Health service delivery ....................................................................... 2
1.2 Conceptual framework: The International Classification of Functioning, Disability
and Health and PLWH ............................................................................................................ 6
1.3 Statement of the problem .......................................................................................... 9
1.4 Research questions ................................................................................................... 10
1.5 Aims ........................................................................................................................... 11
1.6 Objectives .................................................................................................................. 11
1.7 Rationale for the study .............................................................................................. 12
1.8 Structure of the thesis ............................................................................................... 13
2 CHAPTER TWO: LITERATURE REVIEW............................................................................... 15
2.1 Introduction............................................................................................................... 15
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2.2 HIV and AIDS.............................................................................................................. 16
2.2.1 Introduction ............................................................................................................. 16

2.2.2 HIV types .................................................................................................................. 16

2.2.3 HIV pathology .......................................................................................................... 17

2.2.4 Stages of HIV infection ....................................................................................... 17

2.2.5 2.2.4.1 Classification of HIV infection ................................................................ 18
2.2.6 Antiretroviral treatment .................................................................................... 20
2.2.7 Epidemiology of HIV ........................................................................................... 23
2.3 Models of Disability ................................................................................................... 25
2.3.1 Principles of the ICF ........................................................................................... 26
2.3.2 Components of the ICF ...................................................................................... 26
2.4 PLWH and body impairments, activity limitations, social participation restrictions
and contextual factors ......................................................................................................... 29
2.4.1 PLWH and body impairment .............................................................................. 30
2.4.2 PLWH and activity limitations and participation restrictions ............................ 60
2.4.3 PLWH and contextual factors ............................................................................ 68
2.5 PLWH and the Hospital environment ....................................................................... 69
2.5.1 Health for all and the primary health care approach ........................................ 69
2.5.2 Barriers and facilitators to hospital care ........................................................... 71
2.5.3 Comprehensive care and collaboration ............................................................. 71
2.5.4 Health service delivery in Rwanda ..................................................................... 72
2.5.5 Rehabilitation care and PLWH ........................................................................... 75
2.6 Disability/functional limitations and outcome instruments ..................................... 77
2.6.1 Validity and reliability and disability/functional limitations outcome
instrumentations .............................................................................................................. 78
2.7 Conclusion ................................................................................................................. 81
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3 CHAPTER THREE: THE PROFILE OF PLWH ATTENDING ARV CLINICS – METHODOLOGY
AND RESULTS ........................................................................................................................... 82
3.1 Introduction............................................................................................................... 82
3.2 Background ................................................................................................................ 82

3.3 Aims and Objectives .................................................................................................. 83

3.3.1 Aim ..................................................................................................................... 83
3.3.2 Objectives........................................................................................................... 83
3.4 Methodology ............................................................................................................. 83
3.4.1 Research design ................................................................................................. 83
3.4.2 Research setting ................................................................................................. 83
3.4.3 Study population, sampling technique and sample size, selection of districts
and hospitals ..................................................................................................................... 83
3.4.4 Instrumentation ................................................................................................. 85
3.4.5 Procedure ........................................................................................................... 85
3.4.6 Ethical considerations ........................................................................................ 87
3.4.7 Data management analysis ................................................................................ 88
3.5 Results ....................................................................................................................... 88
3.5.1 Demographic data .............................................................................................. 88
3.5.2 Health status ...................................................................................................... 93
3.5.3 Functional status as measured by the WHODAS 2.0 ......................................... 98
3.5.4 Determinants of scores in the different domains ........................................... 118
3.5.5 Summary of main findings ............................................................................... 127
4 CHAPTER FOUR: PERCEPTIONS OF PLWH OF THEIR IMPAIRMENTS, FUNCTIONAL ABILITY
AND ENVIRONENTAL FACTORS – METHODOLOGY AND RESULTS ........................................ 128
4.1 Introduction............................................................................................................. 128
4.2 Background .............................................................................................................. 128
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