quality of life of people living with hiv and aids in swaziland who are on antiretroviral therapy

291 Pages·2013·1.33 MB·English

QUALITY OF LIFE OF PEOPLE LIVING WITH HIV AND AIDS
IN SWAZILAND WHO ARE ON ANTIRETROVIRAL
THERAPY

by

THERESA THEMBI NTSHAKALA

Submitted in accordance with the requirements
for the degree of

DOCTOR OF LITERATURE AND PHILOSOPHY

in the subject

HEALTH STUDIES

at the

UNIVERSITY OF SOUTH AFRICA

PROMOTER: PROF. T.R. MAVUNDLA
JOINT PROMOTER: DR B. DOLAMO

September 2012
Student number: 3463-822-9

DECLARATION

I declare that QUALITY OF LIFE OF PEOPLE LIVING WITH HIV AND AIDS IN
SWAZILAND WHO ARE ON ANTIRETROVIRAL THERAPY is my own work and
that all sources that I have used or quoted have been indicated and acknowledged
by means of complete references and that this work has not been submitted before
for any other degree at any institution.

SIGNATURE: ............................................................. DATE: .................................
(Theresa T. Ntshakala)
QUALITY OF LIFE OF PEOPLE LIVING WITH HIV AND AIDS
IN SWAZILAND WHO ARE ON ANTIRETROVIRAL
THERAPY

STUDENT NUMBER: 3463-822-9
STUDENT: THERESA THEMBI NTSHAKALA
DEGREE: DOCTOR OF LITERATURE AND PHILOSOPHY
DEPARTMENT: HEALTH STUDIES, UNIVERSITY OF SOUTH AFRICA
PROMOTER : PROF. T.R. MAVUNDLA
JOINT PROMOTER: DR B. DOLAMO

Abstract
This study was done to assess the quality of life (QOL) of people living with HIV and
AIDS (PLWHA) in Swaziland who are on antiretroviral therapy (ART). No study has
been done on QOL of PLWHA in Swaziland who are on ART since it started to be
administered in Swaziland in 2001.

A qualitative, exploratory, descriptive, and contextual design was used to assess
QOL of PLWHA in Swaziland who are on ART. Twenty-four PLWHA were purposely
selected to participate in the study. Methods of data collection used were semi-
structured individual in-depth interviews, focus group discussions, and observations.
The data (tape-recorded interviews and discussions, and field notes) were
transcribed verbatim for data analysis. Data analysed was done using Tesch’s
framework of data analysis as described in Creswell (2002:256-283).

The research findings are reflected, with the six domains of QOL identified through a
literature review and validated by nurses’ expertise. These domains are the
physiological, psychological, spiritual, socio-economic, cognitive, and environmental
domains.

The study revealed that PLWHA in Swaziland are faced with many challenges
concerning ART, namely: inability to meet their nutrition needs, non-adherence to
ART, experience of disfiguring side effects of ARVs, inconsistent condom use,
experience of stigma and discrimination, depression, difficulty in accepting and
coping with ARVs, lowered self-esteem, a negative influence of some religions on
ART, a lack of financial support, poor support systems, poor understanding of ARVs,
negative thoughts about HIV and AIDS and ART, an unsatisfactory health care
delivery system, a negative influence of culture on ART, and violation of the rights of
PLWHA. These challenges negatively influence the QOL of PLWHA and hence the
study concluded that PLWHA in Swaziland who are on ART have a poor QOL.

Conclusions drawn from the data analysis reveal that PLWHA in Swaziland are
powerless to deal with the above challenges and improve their QOL. The researcher,
therefore, developed guidelines to empower PLWHA to deal with these challenges
and adhere to ART, thus improving their QOL. Recommendations were made with
regard to nursing practice, nursing education, and further nursing research.

KEYWORDS: quality of life (QOL), people living with HIV and AIDS (PLWHA),
antiretroviral therapy (ART), voluntary counseling and testing (VCT), guidelines.
ACKNOWLEDGEMENTS

“It always seems impossible until it is done.” Nelson Mandela

At first, it seemed like an impossible journey. This thesis was made possible with the
contributions of some individuals. It is not possible to mention all those who
contributed to the success of this study. However, I wish to express my sincere
gratitude to the following people:

First and foremost, I thank God the Almighty, who gave me the strength and
determination to complete this study.

In addition, my sincere thanks go to my promoters, Prof. T.R. Mavundla and Dr B.
Dolamo, for the unreserved support, patience, and assistance that they showed me
during the course of this study.

I also wish to thank the following parties:
• My employer, the Nazarene College of Nursing (NCN), for allowing me to
pursue my study.
• The University of South Africa (UNISA), for its financial support, in the form of
a bursary.
• Ms. Phumzile Shongwe, for her patience in typing this manuscript.
• Mr. Anthony E Sparg, for his expertise and patience in editing and formatting
this document.
• The UNISA and NCN library staff, for their assistance in locating literature
sources.
• My mother, for her continual encouragement.
• My two beautiful girls, Khosi and Lindo, for their enduring love and support.
• Lastly, but not least, all the participants, for their willingness to participate in
the study.
DEDICATION

This thesis is dedicated to my late father, whose departure left a vacuum in my life.
He believed that “all things are possible for all those that trust in the Lord”. I am also
dedicating this thesis to all the HIV and AIDS survivors in the world, hoping that
someday our prayers will be answered, and a cure for HIV will be found.
i

Table of contents Page

CHAPTER 1

Orientation to the study

1.1 INTRODUCTION ................................................................................................... 1

1.2 BACKGROUND ...................................................................................................... 2

1.3 PROBLEM STATEMENT ........................................................................................ 8

1.4 RESEARCH QUESTIONS ...................................................................................... 8

1.5 PURPOSE OF THE STUDY ................................................................................... 9

1.6 RESEARCH OBJECTIVES ..................................................................................... 9

1.7 SIGNIFICANCE OF QUALITY OF LIFE ASSESMENT IN NURSING .................... 9

1.8 THE CONTEXT OF THE STUDY ......................................................................... 11

1.9 THE PARADIGM EMPLOYED, AND IT’S APPLICATION IN THE CONTEXT
OF THIS STUDY .................................................................................................. 13

1.9.1 Meta-theoretical assumptions ........................................................................... 14

1.9.1.1 The client/person .............................................................................................. 14
1.9.1.2 The environment ............................................................................................... 15
1.9.1.3 Health ............................................................................................................... 16
1.9.1.4 Nursing ............................................................................................................. 16
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1.9.2 Theoretical assumptions ................................................................................... 17

1.9.2.1 Theoretical definitions ....................................................................................... 18

1.9.3 Methodological assumptions ............................................................................ 19

1.10 MEASURES OF ENSURING TRUSTWORTHINESS ........................................... 21

1.11 ETHICAL CONSIDERATIONS ............................................................................. 21

1.12 THE SCOPE OF THE STUDY .............................................................................. 21

1.13 OUTLINE OF THE THESIS .................................................................................. 24

1.14 CONCLUSION ...................................................................................................... 24

CHAPTER 2
Research designs and methods
2.1 INTRODUCTION .................................................................................................. 25
2.2 OVERALL AIM OF THE STUDY ........................................................................... 25
2.3 RESEARCH DESIGN ........................................................................................... 26
2.3.1 Qualitative approach ......................................................................................... 26
2.3.2 Exploratory approach ....................................................................................... 27
2.3.3 Descriptive approach ........................................................................................ 28
2.3.4 Contextual approach ........................................................................................ 29

2.4 REASONING STRATEGIES ................................................................................. 29
2.4.1 Bracketing ......................................................................................................... 29
2.4.2 Intuition ............................................................................................................. 30
2.4.3 Inductive reasoning .......................................................................................... 30
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2.4.4 Deductive reasoning ......................................................................................... 31

2.5 RESEARCH METHODS ....................................................................................... 31
2.5.1 Phase 1: Description of the concept of QOL..................................................... 32
2.5.2 Phase 2: Validation of the domains of QOL by a sample of nurses who are
involved in the care of PLWHA in Swaziland who are on ART ......................... 32
2.5.2.1 Purpose of the workshop .................................................................................. 32
2.5.2.2 Sampling........................................................................................................... 34
2.5.2.3 Workshop process ............................................................................................ 35
2.5.2.4 Debriefing ......................................................................................................... 36

2.5.3 Phase 3: Assessment of QOL of PLWHA in Swaziland who are on ART ......... 37
2.5.3.1 Gaining entry and access ............................................................................. 37
2.5.3.2 Population and sampling .............................................................................. 38
2.5.3.3 Data collection .............................................................................................. 42
2.5.3.3.1 Participative consultative observation .......................................................... 43
2.5.3.3.2 Semi-structured in-depth individual interviews ............................................. 44
2.5.3.3.3 Focus group discussions .............................................................................. 46
2.5.3.4 Data analysis ................................................................................................ 53
2.5.3.5 Discussion of the QOL of PLWHA who are on ART in Swaziland and a
literature control………..…………………………………………… ................. 54

2.5.4 Phase 4: Description of empowerment guidelines for PLWHA in Swaziland .... 54
2.6 MEASURES FOR ENSURING TRUSTWORTHINESS ........................................ 54
2.6.1 Credibility .......................................................................................................... 55
2.6.2 Transferability ................................................................................................... 58
2.6.3 Dependability .................................................................................................... 59
2.6.4 Confirmability .................................................................................................... 60

2.7 ETHICAL AND LEGAL CONSIDERATIONS ........................................................ 62
2.7.1 The participant .................................................................................................. 62
2.7.2 The institutions ................................................................................................. 67
2.7.3 The integrity of the researcher .......................................................................... 67
2.7.4 The quality of the research ............................................................................... 67
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2.8 TERMINATION ..................................................................................................... 68
2.9 DISSEMINATION OF THE INFORMATION ......................................................... 68
2.10 CONCLUSION ...................................................................................................... 69

CHAPTER 3
Review of related literature
3.1 INTRODUCTION .................................................................................................. 70
3.2 CONCEPT ANALYSIS OF QUALITY OF LIFE ..................................................... 72
3.2.1 Definition of the central concepts ...................................................................... 73
3.2.1.1 Life .................................................................................................................... 74
3.2.1.2 Quality .............................................................................................................. 75
3.2.1.3 Subject definition of quality of life ..................................................................... 76
3.2.1.4 Quality of life definitions .................................................................................... 83
3.2.1.5 Definition of QOL based on the reviewed definitions of QOL…………………....94

3.3 QUALITY OF LIFE AND ANTIRETROVIRAL THERAPY ..................................... 97
3.4 CONCLUSION .................................................................................................... 102

CHAPTER 4
Validation of the domains of quality of life
4.1 INTRODUCTION ................................................................................................ 104
4.2 THEMES THAT EMERGED DURING THE DATA ANALYSIS ........................... 104
4.2.1 The physiological domain ............................................................................... 105
4.2.2 The psychological domain .............................................................................. 107
4.2.3 The spiritual domain ....................................................................................... 112
4.2.4 The socio-economic domain ........................................................................... 114
4.2.5 The cognitive domain ..................................................................................... 115