DEVELOPMENT AND VALIDATION OF A QUALITY OF LIFE QUESTIONNAIRE
FOR PEOPLE LIVING WITH EPILEPSY IN GHANA
David Atsu Deegbe
A thesis submitted to the Faculty of Health Sciences, University of the Witwatersrand,
Johannesburg, in fulfilment of the requirement for the degree of Doctor of Philosophy
in Nursing
Johannesburg, 2021
i
DECLARATION
I, David Atsu Deegbe, declare that this research report (Human Ethics Clearance Number
M180946) is my own work. It is being submitted for the degree of Doctor of Philosophy in
Nursing at the University of Witwatersrand, Johannesburg. It has not been submitted before
for any degree or examination in this or any other university.
……………………………………..
Signed at Johannesburg
On the 10th November 2021
ii
DEDICATION
I dedicate this thesis to my father, Ex. WO1 Daniel Cudjoe Deegbe, of blessed memory; my
beloved wife, Eno Akyaah Deegbe, and my children, Senyo, Eyram, Aseye and Akorfa.
iii
PUBLICATIONS ARISING FROM THIS RESEARCH PROJECT
1. Deegbe DA, Tshabalala AM, Aziato L, Casteleijn D. Meanings of Quality of Life among
People Living with Epilepsy in Ghana; A Qualitative Exploratory Study. Epilepsy Behav.
2021; In Press.
iv
ABSTRACT
Background: A number of epilepsy quality of life (QoL) questionnaires have been developed
in Western and European countries which do not necessarily apply to the sociocultural context
of countries in other parts of the world. Some countries developed their own questionnaires
whilst others adopted and validated existing epilepsy QoL questionnaires to match their
sociocultural context. However, no questionnaire was found to accurately assesses the QoL of
people living with epilepsy (PLWE) in sub-Saharan African (SSA) countries, including Ghana.
Aim: The aim of this study was to develop and validate a culturally sensitive QoL questionnaire
that is best suited for the accurate and consistent assessment of QoL of PLWE in Ghana.
Methodology: The sequential multimethod study design involving nine steps in three phases
was employed in this study. Phase one conceptualised the construct of QoL through a scoping
and integrative review as well as a qualitative explorative study with PLWE in Ghana. In phase
two, the findings from phase one were integrated to generate a pool of items which were used
to develop the first and second drafts of the epilepsy QoL questionnaire through consultation
with the supervisors and the experts in a nominal group technique, respectively. The content
and face validity of the questionnaire were tested in phase three using eight experts and four
PLWE.
Findings: A pool of 64 items under 13 domains were generated from the first phase and refined
for the first draft questionnaire named the QOLIE-GH and comprising 41 items and 11
domains. After employing the nominal group technique to establish relevance to the
sociocultural context of Ghana, an additional 25 items and 2 domains were created. The second
draft then had 66 items under 13 domains. Content validity testing led to the elimination of five
items, leaving a remainder of 61 items under 13 domains to form the third draft QOLIE-GH
with I-CVI ranging from 0.83 to 1. Face validity testing led to no change, and respondents
considered all the items to be relevant and easy to understand.
Conclusion: The results from the study showed that the questionnaire is culturally sensitive to
PLWE in Ghana, has good content validity appropriate for assessing QoL of PLWE in Ghana.
This will help health workers, researchers and policy makers assess the QoL of PLWE and to
plan and make informed interventions to promote the QoL and wellbeing of PLWE in Ghana.
Future studies should undertake further validation of the QOLIE-GH to make it applicable to
countries in SSA.
Key Words: “Epilepsy”, “Quality of Life”, “Questionnaire”, “People Living with Epilepsy”,
“Questionnaire Development and Validation”
v
ACKNOWLEDGEMENTS
All glory and honour to God the Father, the Son and the Holy Spirit. I acknowledge my two
supervisors, Dr. Amme MardulateTshabalala and Professor Daleen Casteleijn, for believing in
me and supporting me to complete this work successfully. I also acknowledge Professor Lydia
Aziato, Dean of School of Nursing and Midwifery, University of Ghana, for standing in as my
local supervisor and pushing me harder and motivating me to complete my PhD.
I acknowledge Professor Lize Maree and Professor Shelly Schmollgruber all from the
Department of Nursing Education, University of the Witwatersrand, for guiding me during my
research proposal development. Thanks to all the patients who took part in the qualitative
interviews and the face validity testing process; and the experts who took part in the nominal
group technique and content validity testing for their immense and priceless contribution to the
success of this work.
I acknowledge both my current and former heads of department, Dr. Samuel Adjorlolo and Dr.
Puplampu, for availing themselves to support and direct me. To the faculty of School of
Nursing and Midwifery, University of Ghana, I thank you for being there for me and supporting
me in diverse ways to complete my PhD.
I thank you, Dr. Christmal Dela Christmals, for standing by me as a brother and supporting me
physically and spiritually, from the time I begun to apply for my PhD until the end of my PhD.
Indeed, you have proven that a friend can be closer than a brother. To my colleagues, Oboshie
Anim-Boamah, Alhassan Abubakari Sibdow, David Tenkorang-Twum, Gilbert Nachinab,
Oyeyemi Oyelade, James Avoka Asamani, I am honoured to stand side by side with you
throughout this PhD journey.
To my pastors, Professor Anarfi, Dr. Osei Safo, Mr. Sampson Addo and Mr. S.O. Peprah, I am
most grateful for your spiritual guidance, encouragement and support.
I am so thankful to my in-laws, Janet Adu-Boahen and Mr. Adu-Boahen, for standing in and
supporting my family throughout the period of my studies. God bless you and give you peace.
To all those who believed in me and urged me on; Reverend Alexander Attiogbe, Alhaji
Muhammad Amin Jibril, Helena Deegbe, Maxwel Ntumy, Francis Zekortia, Kenneth Kodzo
Dzah, Charles Sefenu, Dr. Samuel Amponsah, Dr. Angela Anarfi Gyasi-Gyamerah, Elorm
Siame, Solomon Oduum, Angela Atsu Yayra, Eric and Pious Atchia, Michael and Maame Esi
Ayensah - God bless you and increase you abundantly.
vi
TABLE OF CONTENTS
Contents Page
DECLARATION ........................................................................................................................ i
DEDICATION ........................................................................................................................... ii
PUBLICATIONS ARISING FROM THIS RESEARCH PROJECT ..................................... iii
ABSTRACT .............................................................................................................................. iv
ACKNOWLEDGEMENTS ....................................................................................................... v
TABLE OF CONTENTS .......................................................................................................... vi
LIST OF FIGURES ................................................................................................................ xiv
LIST OF TABLES ................................................................................................................... xv
LIST OF ABBREVIATIONS ................................................................................................ xvii
CHAPTER ONE: ORIENTATION TO THE STUDY ............................................................. 1
1.1 INTRODUCTION AND BACKGROUND TO THE STUDY .................................. 1
1.2 PROBLEM STATEMENT ......................................................................................... 6
1.3 RESEARCH QUESTION ........................................................................................... 6
1.4 PURPOSE OF THE STUDY ...................................................................................... 6
1.5 OBJECTIVES OF THE STUDY ................................................................................ 7
1.5.1 Phase One: Conceptualization phase ................................................................... 7
1.5.2 Phase Two: Operationalisation phase .................................................................. 7
1.5.3 Phase Three: Validation phase ............................................................................. 7
1.6 SIGNIFICANCE OF THE STUDY ............................................................................ 7
1.7 THEORETICAL FOUNDATIONS OF THE STUDY ............................................... 8
1.7.1 Meta-theoretical assumptions .............................................................................. 8
1.7.2 Theoretical assumptions....................................................................................... 9
1.7.3 Integrative quality of life theory ........................................................................ 10
1.8 CONCEPTUAL DEFINITION OF TERMS ............................................................ 10
1.9 METHODOLOGICAL ASSUMPTIONS ................................................................ 11
vii
1.10 OVERVIEW OF RESEARCH DESIGN AND METHODS .................................... 12
1.11 ORGANIZATION OF THE THESIS ....................................................................... 14
1.12 SUMMARY .............................................................................................................. 14
CHAPTER TWO: LITERATURE REVIEW AND CONCEPTUAL FRAMEWORK .......... 16
2.1 INTRODUCTION ..................................................................................................... 16
2.2 LIVING WITH EPILEPSY ...................................................................................... 16
2.2.3 Physical effect .................................................................................................... 16
2.2.4 Activities of daily living .................................................................................... 17
2.2.5 Socioeconomic effect ......................................................................................... 17
2.2.6 Public knowledge and perception about epilepsy .............................................. 18
2.2.7 Psychological and emotional experiences ......................................................... 18
2.2.8 Relationship with people.................................................................................... 19
2.3 CONCEPTUAL FRAMEWORK ............................................................................. 20
2.3.3 Subjective Quality of Life .................................................................................. 21
2.3.4 Existential Quality of Life ................................................................................. 23
2.3.5 Objective Quality of Life ................................................................................... 23
2.4 CONCEPT OF QUALITY OF LIFE ........................................................................ 25
2.4.1 Health Status ...................................................................................................... 25
2.4.2 Quality of Life.................................................................................................... 25
2.4.3 Health-Related Quality of Life .......................................................................... 26
2.4.4 Quality of life and health related quality of life ................................................. 27
2.5 SUMMARY .............................................................................................................. 27
CHAPTER THREE: METHODOLOGY ................................................................................ 29
3.1 INTRODUCTION ..................................................................................................... 29
3.2 RESEARCH SETTING ............................................................................................ 29
3.3 RESEARCH DESIGN .............................................................................................. 30
3.3.1 Research and design methods ............................................................................ 31
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3.3.2 Aligning the research design methodology with the multimethod design in this
study 33
3.4 PHASE ONE: CONCEPTUALISATION ................................................................ 34
3.4.1 Content of quality of life questionnaires: Scoping review................................. 34
3.4.2 Quality of life among PLWE: Integrative review .............................................. 36
3.4.3 Meaning of quality of life among PLWE in Ghana: Exploratory qualitative
study 37
3.5 PHASE TWO: OPERATIONALISATION .............................................................. 41
3.5.1 Generating items for the Epilepsy Quality of Life Instrument for Ghana ......... 41
3.5.2 Drafting of Epilepsy Quality of Life Questionnaire for Ghana ......................... 42
3.5.3 Development of scale of measurement and scoring for the Epilepsy Quality of
Life Questionnaire for Ghana ........................................................................................... 42
3.5.4 Expert review ..................................................................................................... 42
3.6 PHASE THREE: VALIDATION ............................................................................. 43
3.6.1 Research Design................................................................................................. 43
3.6.2 Content validity testing ...................................................................................... 43
3.6.3 Face validity testing ........................................................................................... 44
3.7 ETHICAL PRINCIPLES .......................................................................................... 44
3.7.1 Institutional Permission ..................................................................................... 44
3.7.2 Principle of autonomy ........................................................................................ 45
3.7.3 Respect for free and informed consent .............................................................. 45
3.7.4 Principle of beneficence ..................................................................................... 45
3.7.5 Principle of non-maleficence ............................................................................. 46
3.7.6 Dissemination of research findings .................................................................... 46
3.7.7 Conflict of interest ............................................................................................. 47
3.8 SUMMARY .............................................................................................................. 47
CHAPTER FOUR: SCOPING AND INTEGRATIVE LITERATURE REVIEWS ............... 48
4.1 INTRODUCTION ..................................................................................................... 48
ix
4.2 CONCEPTS AND CONSTRUCTS OF QUALITY OF LIFE QUESTIONNAIRES:
SCOPING REVIEW ............................................................................................................ 48
4.2.1 Aim of the review .............................................................................................. 48
4.2.2 Design and methods ........................................................................................... 48
4.2.3 Identification of the review question ................................................................. 49
4.2.4 Search for studies ............................................................................................... 49
4.2.5 Selection of relevant studies .............................................................................. 50
4.2.6 Charting of data.................................................................................................. 52
4.2.7 Collating, summarising and presentation of results ........................................... 59
4.3 QUALITY OF LIFE AMONG PLWE: INTEGRATIVE REVIEW ........................ 62
4.3.1 Aim of the review .............................................................................................. 62
4.3.2 Design and methods ........................................................................................... 62
4.3.3 Problem identification/ Research Question ....................................................... 63
4.3.4 Literature search................................................................................................. 63
4.3.5 Data evaluation .................................................................................................. 69
4.3.6 Data extraction and synthesis............................................................................. 71
4.3.7 Presentation ........................................................................................................ 72
4.4 DISCUSSION OF SCOPING AND INTEGRATIVE REVIEW ............................. 80
4.4.1 Scoping review................................................................................................... 80
4.4.2 Integrative review .............................................................................................. 82
4.5 CONCLUSION ......................................................................................................... 84
CHAPTER FIVE: QUALITATIVE EXPLORATORY STUDY ............................................ 86
5.1 INTRODUCTION ..................................................................................................... 86
5.2 METHODS................................................................................................................ 86
5.2.1 Research Design................................................................................................. 86
5.2.2 Study Population and Sample ............................................................................ 86
5.2.3 Data Collection .................................................................................................. 87
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5.2.4 Data analysis ...................................................................................................... 87
5.2.5 Methodological rigour ....................................................................................... 87
5.3 RESULTS.................................................................................................................. 87
5.3.1 Demographic Characteristic of Participants ...................................................... 88
5.3.2 Themes and Categories ...................................................................................... 89
5.3.3 Support ............................................................................................................... 89
5.3.4 Acceptance ......................................................................................................... 93
5.3.5 Seizure control ................................................................................................... 96
5.3.6 Self-reliance ..................................................................................................... 100
5.4 DISCUSSION ......................................................................................................... 102
5.4.1 Support ............................................................................................................. 102
5.4.2 Acceptance ....................................................................................................... 104
5.4.3 Seizure control ................................................................................................. 105
5.4.4 Self-reliance ..................................................................................................... 107
5.5 CONCLUSION ....................................................................................................... 108
CHAPTER SIX: QUESTIONNAIRE DEVELOPMENT ..................................................... 109
6.1 INTRODUCTION ................................................................................................... 109
6.2 INTEGRATION OF FINDINGS FROM CHAPTERS FOUR AND FIVE ........... 109
6.2.1 Item generation ................................................................................................ 109
6.2.2 Construction of the epilepsy-specific QoL questionnaire for PLWE in Ghana
113
6.2.3 Respondents’ characteristics ............................................................................ 118
6.3 NAMING OF THE QUESTIONNAIRE ................................................................ 119
6.4 NOMINAL GROUP TECHNIQUE........................................................................ 119
6.4.1 Procedure ......................................................................................................... 119
6.4.2 Analysis............................................................................................................ 122
6.4.3 Results .............................................................................................................. 123
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6.5 DISCUSSION ......................................................................................................... 139
6.6 CHAPTER SUMMARY ......................................................................................... 142
CHAPTER SEVEN: THE CONTENT VALIDITY AND FACE VALIDITY OF EPILEPSY
QUALITY OF LIFE QUESTIONNAIRE ............................................................................. 143
7.1 INTRODUCTION ................................................................................................... 143
7.2 METHODS.............................................................................................................. 143
7.2.1 Content validity testing .................................................................................... 143
7.2.2 Face validity testing ......................................................................................... 145
7.3 RESULTS................................................................................................................ 147
7.3.1 Results of content validity index...................................................................... 148
7.3.2 Results of face validity testing ......................................................................... 152
7.4 DISCUSSION ......................................................................................................... 154
7.5 CONCLUSION ....................................................................................................... 155
CHAPTER EIGHT: SUMMARY OF FINDINGS, STRENGTHS AND LIMITATIONS,
RECOMMENDATIONS AND CONCLUSIONS ................................................................ 156
8.1 INTRODUCTION ................................................................................................... 156
8.2 SUMMARY OF FINDINGS .................................................................................. 156
8.2.1 Phase one: Conceptualisation of the construct of quality of life of people living
with epilepsy in Ghana ................................................................................................... 156
8.2.2 Phase two: Operationalisation of the Quality of Life Questionnaire ............... 158
8.2.3 Phase three: Validation of the epilepsy Quality of Life Questionnaire ........... 159
8.3 STRENGTHS OF THE RESEARCH ..................................................................... 159
8.4 LIMITATIONS OF THE RESEARCH .................................................................. 160
8.5 RECOMMENDATIONS ........................................................................................ 161
8.5.1 Nursing research .............................................................................................. 161
8.5.2 Nursing practice and management ................................................................... 161
8.5.3 Community mental health nursing ................................................................... 162
8.5.4 Nursing education ............................................................................................ 163
xii
8.5.5 Health policy and implementation ................................................................... 163
8.6 CONCLUSION ....................................................................................................... 164
REFERENCES ...................................................................................................................... 166
APPENDIX A: WITS ETHICS CLEARANCE CERTFICATE ........................................... 192
APPENDIX B: GHANA HEALTH SERVICE ETHICS CLEARANCE CERTIFICATE .. 193
APPENDIX C: APPROVAL LETTER FROM GREATER ACCRA REGIONAL HEALTH
DIRECTOR............................................................................................................................ 194
APPENDIX D: SEMI-STRUCTURED INTERVIEW GUIDE FOR PEOPLE LIVING WITH
EPILEPSY ............................................................................................................................. 195
APPENDIX E: PARTICIPANT INFORMATION SHEET - FACE-TO-FACE IN-DEPTH
INTERVIEW ......................................................................................................................... 196
APPENDIX F: CONSENT FORM FOR PARTICIPANTS - FACE-TO-FACE IN-DEPTH
INTERVIEW ......................................................................................................................... 198
APPENDIX G: PARTICIPANT INVITATION LETTER - NOMINAL GROUP
TECHNIQUE ......................................................................................................................... 199
APPENDIX H: PARTICIPANT INFORMATION SHEET - NOMINAL GROUP
TECHNIQUE ......................................................................................................................... 200
APPENDIX I: PARTICIPANT CONSENT FORM - NOMINAL GROUP TECHNIQUE . 202
APPENDIX J: CONTENT VALIDITY TESTING QUESTIONNAIRE ............................. 203
APPENDIX K: PARTICIPANT INVITATION LETTER - CONTENT VALIDITY
TESTING ............................................................................................................................... 212
APPENDIX L: PARTICIPANT INFORMATION SHEET - CONTENT VALIDITY
TESTING ............................................................................................................................... 213
APPENDIX M: PARTICIPANT CONSENT FORM - CONTENT VALIDITY TESTING 215
APPENDIX N: CONTENT VALIDITY INDEX.................................................................. 216
APPENDIX O: FACE VALIDITY TESTING QUESTIONNAIRE..................................... 219
APPENDIX P: PARTICIPANT INVITATION LETTER - FACE VALIDITY TESTING . 221
APPENDIX Q: PARTICIPANT INFORMATION SHEET - FACE VALIDITY TESTING
................................................................................................................................................ 222
xiii
APPENDIX R: PARTICIPANT CONSENT FORM - FACE VALIDITY TESTING ......... 224
APPENDIX S: THIRD DRAFT OF QOLIE-GH QUESTIONNAIRE ................................. 225
APPENDIX T: SAMPLE OF COMMENTS OF EXPERTS FROM NOMINAL GROUP
TECHNIQUE ......................................................................................................................... 231
xiv
LIST OF FIGURES
Figure 2.1: The Integrative Quality of Life Model by Søren Ventegodt et al. (2003) ............. 21
Figure 4.1: PRISMA diagram of the Scoping review .............................................................. 51
Figure 4.2: PRISMA diagram of Integrative review ............................................................... 65
Figure 4.3: Year of publication of journals .............................................................................. 67
Figure 4.4: Summary of quality of studies included ................................................................ 69
Figure 5.6: Meaning of quality of life among people living with epilepsy ........................... 102
Figure 6.1: Generation of items for the first draft of epilepsy-specific Quality of Life
Questionnaire for people living with epilepsy in Ghana ....................................................... 115
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LIST OF TABLES
Table 1.1: An overview of the research methods applied in the study .................................... 13
Table 1.2: Structure of the Thesis ............................................................................................ 14
Table 3.3: Six milestones for design and development and research activity ......................... 33
Table 4.1: Articles rejected with reasons ................................................................................. 52
Table 4.2: Summary of studies included .................................................................................. 53
Table 4.3: Consolidated content of Epilepsy-specific QOL questionnaires ............................ 60
Table 4.4: Articles rejected with reasons ................................................................................. 66
Table 4.5: Countries from which studies were conducted ....................................................... 68
Table 4.6: Quality assessment matrix ...................................................................................... 70
Table 4.7: Summary of studies included .................................................................................. 73
Table 5.1: Socio-demographic characteristics of participants (n = 15) ................................... 88
Table 5.2: Themes and sub-themes .......................................................................................... 89
Table 6.1: Pool of items generated at first attempt ................................................................ 110
Table 6.2: First draft Quality-of-Life questionnaire for people with epilepsy ...................... 115
Table 6.3: Socio-demographic characteristics and clinical information about respondents .. 118
Table 6.4: Demographic characteristics of respondents ........................................................ 123
Table 6.5: Domain 1: Seizure worry ...................................................................................... 124
Table 6.6: Domain 2: Seizure control .................................................................................... 124
Table 6.7: Domain 3: Emotional wellbeing ........................................................................... 125
Table 6.8: Domain 4: Energy/ Fatigue ................................................................................... 125
Table 6.9: Domain 5: Cognitive function .............................................................................. 126
Table 6.10: Domain 6 (Medication effects) ........................................................................... 126
Table 6.11: Domain 7: Social function .................................................................................. 127
Table 6.12: Domain 8: Seizure severity ................................................................................. 128
Table 6.13: Domain 9: Acceptance ........................................................................................ 128
Table 6.14: Domain 10: Self-reliance .................................................................................... 129
Table 6.15: Domain 11: Spiritual life .................................................................................... 129
Table 6.16: Second draft Quality of Life Questionnaire for people living with epilepsy in
Ghana ..................................................................................................................................... 132
Table 6.17: Revised demographic characteristics of respondents ......................................... 137
Table 7.1: Criteria for measuring content validity of the Quality of Life Questionnaire for
people living with epilepsy .................................................................................................... 144
xvi
Table 7.2: Face validity testing questionnaire ....................................................................... 147
Table 7.3: Demographic characteristics of respondents ........................................................ 148
Table 7.4: Scale content validity index (S-CVI) .................................................................... 151
Table 7.5: Socio-Demographic Characteristics of respondents (n=4) ................................... 152
Table 7.6: Results from the face validity testing questionnaire ............................................. 153
xvii
LIST OF ABBREVIATIONS
AEDs: Anti-Epileptic Drugs
CINAHL: Cumulative Index to Nursing and Allied Health
COVID-19: Corona Virus Disease - 2019
EQ-5D-3L: European Quality-of-Life
HRQoL: Health-Related Quality of Life
I-CVI: Individual Content Validity Index
IQOL: Integrated Quality of Life
MAXQDA: Max Qualitative Data Analysis
NGT: Nominal Group Technique
PCC: Population, Concept and Context
PLWE: People Living with Epilepsy
PRISMA: Prevention and Recovery Information System for Monitoring and
Analysis
QALYs: Quality-Adjusted Life-Years
QoL: Quality of Life
QOLIE: Quality of Life in Epilepsy
QOLIE-10: 10-Item QoL in Epilepsy
QOLIE-31: 31-Item QoL in epilepsy
QOLIE-89: 89-Item QoL in Epilepsy
QOLIE-GH Quality of Life in Epilepsy questionnaire for Ghana.
S-CVI: Scale Content Validity Index
SEQOL: Self evaluated Quality of Life
SF-36: 36-Item Short Form Survey
xviii
SSA: sub-Saharan Africa
WHO: World Health Organization
WHOQOL GROUP: World Health Organization Quality of Life Group
1
CHAPTER ONE: ORIENTATION TO THE STUDY
1.1 INTRODUCTION AND BACKGROUND TO THE STUDY
Epilepsy comprises a group of central nervous system disorders characterised by two or more
unprovoked episodes of seizures (Banerjee et al., 2009). Seizures may lead to an altered state
of awareness and abnormal somatic sensation or involuntary muscular activity, or both (Deaton
& Tortora, 2015; Fisher et al., 2014). Roughly 50 million people globally have epilepsy (WHO,
2017). In addition, an estimated proportion between 4 and 20 per 1,000 people globally have
active epilepsy at any given time. About five million people each year across the globe are
diagnosed with epilepsy. This ranges from 49 per 1,000 people in high-income countries to 139
per 1,000 people in low- and middle-income countries (World Health Organisation, 2019).
Thus, an indication of the vast disparity in health care between low- and middle-income
countries. Epilepsy is responsible for about 0.5% of the burden of disease worldwide. Out of
this, 80% of the epilepsy disease burden is in developing countries (Newton & Garcia, 2012).
North-Western India has a low prevalence of epilepsy, accounting for 1.1 per 1,000 people
(Panagariya et al., 2019). The prevalence of epilepsy in the general population in Japan stands
at 6.9 per 1000 people (Tanaka et al., 2019).
In Africa, epilepsy directly affects around 10 million people (WHO, 2017). There is a high
prevalence of epilepsy in sub-Saharan Africa (SSA) (Ba-Diop et al., 2014; Preux & Druet-
Cabanac, 2005), with an estimated 4.4 million people having active epilepsy in the SSA region
(Paul et al., 2012). In West Africa, the prevalence of epilepsy among pooled studies stands at
13.14 per 1000 people (Fodjo et al., 2020). According to (Owolabi et al., 2019), eight out of a
1000 people in Nigeria have epilepsy. In Ghana, about 22,171 people have epilepsy (Ministry
of Health, 2018); however, most of the cases remain unreported. As a result, the accurate
prevalence of epilepsy is unknown and little is known about how epilepsy affects the Quality
of Life (QoL) of People Living with Epilepsy (PLWE).
The high prevalence of epilepsy within SSA countries are due to poor health delivery systems,
poor sanitation and poverty (Chisholm & Evans, 2007; Deaton & Tortora, 2015). The presence
of endemic diseases, including neurocysticercosis and malaria, high incidence of road traffic
accidents and its associated head injuries, differences in medical infrastructure, perinatal
injuries, lack of preventive health services and lack of easily accessible health care are all
contributory factors to the high prevalence of epilepsy in SSA countries (World Health
2
Organisation, 2019). Meanwhile, the treatment gap in epilepsy is also high in SSA (Mbuba et
al., 2012; Sebera et al., 2015; Winkler, 2012). Factors such as inadequately trained personnel,
lack of essential Anti-Epileptic Drugs (AEDs) and traditional beliefs and practices affect the
health-seeking behaviour of PLWE (Engel et al., 2008; Tanywe et al., 2016). These factors
invariably have detrimental effects on the QoL of PLWE in countries within SSA. Higher
endemicity of onchocerciasis, before the onchocerciasis control programme for Africa began,
and a short period for the control of onchocerciasis were linked to increased prevalence of
epilepsy in West Africa (Fodjo et al., 2020).
Indeed, the chronic nature of epilepsy negatively affects the QoL of PLWE (Megari, 2013).
Quality of life is a broad term encompassing not just the absence of disease, but an individual’s
perception of his or her position in life within the perspective of one’s culture and value system,
goals, expectations, and concerns about health (Blond et al., 2016). Health-Related Quality of
Life (HRQoL) is concerned with one's level of functioning and perception of wellbeing in the
domains of health - physically, psychologically and socially (Hays & Reeve, 2010). In fact, a
number of studies (Beghi, 2016; Blond et al., 2016; Preux & Druet-Cabanac, 2005) show that
living with epilepsy has many challenges. The lack of stable jobs, limited social lives, low self-
esteem and conflicts with family also worsens their QoL (Beghi, 2016; Gauffin et al., 2015;
WHO, 2017). As a result, epilepsy affects QoL in multiple domains (Beghi, 2016), such as
physical, psychological, cognitive, social and occupational domains (Blond et al., 2016).
Physically, seizures pose an increased risk of injury and death. The symptoms of epileptic
seizures are frightening and horrific to onlookers (Forsgren et al., 2013). Epilepsy often carries
limitations on driving (Blond et al., 2016). Both epilepsy and the medications used to treat it
are associated with impaired cognition. Drowsiness as a result of AEDs and absenteeism from
work and school as a result of the seizures lead to underachievement and low productivity
among PLWE.
Psychologically, there is an increased risk of anxiety and depression among PLWE. The
unpredictable nature of epilepsy creates some anxiety among PLWE (Jacobs et al., 2009),
placing further restrictions on PLWE (Gauffin & Landtblom, 2014). Moreover, the shame and
the disgrace associated with living with epilepsy places additional stress and burden on the
patient (Deegbe et al., 2020). This impedes their education and career development, resulting
in depressive symptoms and, sometimes, suicidal ideations (Jacobs et al., 2009).
3
Although the seizures only last for a few minutes, the psychological and social problems
experienced by patients and their families are enormous. Marked ones such as generalised
tonic-clonic seizures (grand mal) are openly noticeable to onlookers. Most patients with
generalised tonic-clonic seizures feel embarrassed after a seizure in town, in school, at church,
during an occasion or at work. Less marked ones like absence attacks (petit mal) appear to be
rather strange to onlookers. This may be wrongly interpreted by others as inattentiveness,
rebellion or as mental, emotional or conduct problems. As a result of this, some people mock
them, gossip about them, avoid their company and portray them negatively (Beghi, 2016; de
Boer et al., 2008; Tanywe et al., 2016). These psychological and social problems arising from
the diagnosis of epilepsy (De Boer, 2010) represent a crisis situation that poses a greater
challenge to both the victim and their families.
In Africa, epilepsy is believed to be a spiritual, cultural or religious condition rather than a
medical condition by the majority of the people (Mpoe Johannah Keikelame & Swartz, 2015;
Mugumbate & Zimba, 2018; Watts, 1992). The African traditional religious belief system
regards epilepsy as a disease caused by witchcraft and spiritual possession. The Islamic and
Christian religious beliefs in African regard epilepsy as a disease caused by evil spirits,
demonic attacks, or punishment from God (Mugumbate & Zimba, 2018).
In SSA, spiritual connotations have been attributed to epilepsy, and traditional and faith-based
healers also reinforce these in these countries, including Nigeria (Adewumi et al., 2020), Ghana
(Deegbe et al., 2019) and the Democratic Republic of Congo (Dolo et al., 2018). For example,
the cultural belief that epilepsy is caused by witchcraft, the will of God and other super natural
causes have been reported in Nigeria (Adewumi et al., 2020). In Gabon, children with epilepsy
are believed to be demon-possessed (Ibinga et al., 2019). In addition, the belief that epilepsy is
hereditary and that PLWE are mentally ill exists (Dolo et al., 2018). These traditional and
cultural beliefs about epilepsy invariably affect the attitude of people towards PLWE (Ibinga
et al., 2019).
Negative attitudes towards PLWE makes epilepsy a stigmatizing condition (Hosseini et al.,
2013; Tombini et al., 2019). Due to the nature of the condition, PLWE are treated with
contempt and avoided by people around them (Deegbe et al., 2019). People living with epilepsy
are not only stigmatised in SSA countries but in some first world countries as well. In Sweden,
it was found that immigrants were stigmatised because of their epilepsy and had to deal with
4
negative self-image about the disease. As such, the immigrants had to put in a lot of effort to
be appreciated as a people (Andersson et al., 2021).
The stigma associated with living with epilepsy results in disturbances in their emotions, poor
self-esteem and social withdrawal (Hills, 2007). This stigma impinges on their human rights
and social integration of PLWE (De Boer, 2010). Persons with epilepsy find it difficult to make
life choices such as having children or choosing an education or profession, and most of them
are unable to fulfil their normal social roles and obligations (Choi et al., 2011; Gauffin et al.,
2011). The family is then burdened with the huge responsibility as the primary social support
system for PLWE. The stigma and frustration associated with living with epilepsy are not only
limited to the patients but extends to their families as well, with some family members even
reporting higher perceived stigma than PLWE (Jada et al., 2020).
In the past two decades, there has been a paradigm shift in studies on epilepsy ( Azuma &
Akechi, 2014; Chen et al., 2016; Sajobi et al., 2014). More studies are now focusing on patient-
reported wellbeing and psychosocial outcomes compared to the traditional clinical health
outcomes, such as the effectiveness of antiepileptic medications (Azuma & Akechi, 2014;
Chen et al., 2016; Rawlings, Brown, & Reuber, 2017). This is because assessment of QoL
promotes communication between patients and health professionals and has the potential to
improve upon patient care (King et al., 2016). Quite a number of generic QoL questionnaires
have been used to assess the QoL of PLWE in a number of studies, including the 21-item WHO
Quality of Life Bref-26 (The WHOQOL GROUP, 1998; Kováts et al., 2017; Santos et al.,
2018; Abdelrahim et al., 2015) questionnaire and the 36-Item Short Form Survey questionnaire
(SF-36), also referred to as the RAND 36-Item Health Survey (Demirci et al., 2017; Jacoby et
al., 2013). Subsequently, more than 20 disease-specific epilepsy QoL questionnaires have been
developed. Mostly used ones among them include the 89-item QoL in epilepsy (QOLIE)-89
questionnaire (Devinsky et al., 1995), the 31-item QoL in epilepsy (QOLIE-31) questionnaire
(Cramer et al., 1998), and the 10-item QoL in epilepsy (QOLIE-10) questionnaire (Mollaoğlu
et al., 2017). These epilepsy-specific questionnaires were developed mostly based on
uniqueness of epilepsy as a condition and, the argument that generic questionnaires did not
completely address epilepsy specific domains that impact the QoL of PLWE (Blond et al.,
2016). Some have fewer domains of QoL (QOLIE-10; QOLIE-31) compared to others
(QOLIE-89) (Blond et al., 2016). These epilepsy-specific QoL questionnaires did well to
5
address the disease-specific concerns about epilepsy and its influence on QoL. However, these
questionnaires were developed in some Western and European countries and not SSA.
A preliminary literature review was conducted on questionnaires used in assessing QoL of
PLWE. None of the questionnaires used in the 98 studies reviewed were specifically developed
to access QoL in PLWE in SSA. Only 4.1% (n=4) of the studies were conducted in SSA.
Studies conducted in Uganda (Nabukenay et al., 2014) and South Africa (Ives-Deliperi &
Butler, 2017) used the QOLIE-31 and the QOLIE-89 questionnaires respectively. There is,
however, no report about the validation of these questionnaires in Uganda and South Africa.
Other studies conducted in Sudan (Abdelrahim et al., 2015) and Zambia (Nau et al., 2018) used
the generic QoL questionnaire developed by WHO (WHOQOL-Bref). The QOLIE- 31 and 89
questionnaires were developed in the Western and European countries (Devinsky et al., 1995;
Cramer et al., 1998) as such, these raise concerns about the appropriateness of use of these
questionnaires within the SSA context due to socio-cultural differences.
In fact, culture and values systems have great impact on QoL (WHO as cited in Megari, 2013).
The effect of culture on QoL cannot be underestimated however, existing epilepsy QoL
questionnaires lack cultural sensitivity to other parts of the world (Blond et al., 2016). Attempts
to address cultural sensitivity resulted in the translation of the QOLIE-31 into nine international
languages including Dutch, UK-English, Italian, Danish, German, Swedish, French and
Canadian French and test them (Cramer et al., 1998). The aim was to adapt them to the culture
of these countries but none of these countries were in the sub-Saharan regions. The QOLIE-31
inventory was also adapted to suit the Turkish socio-cultural context (Mollaoğlu et al., 2015).
In order to fit into the cultural specific environment within the European context, the European
Quality-of-Life (EQ-5D-3L) scale was developed (EuroQol Group, 1990). Due to the
sociocultural context with which epilepsy in seen globally and in SSA, and its effect on the
QoL of PLWE, it is obvious that these existing questionnaires cannot be considered as fit for
assessing QoL for PLWE in SSA. Conversely, they may only, as a temporary measure, be used
to evaluate the QoL of PLWE in SSA.
African countries, especially countries within the SSA region have various traditional belief
systems and socio-cultural backgrounds that are unique (de Graft Aikins et al., 2012) and
different from countries in the West and Europe. The socio-economic situation in SSA is also
poor (Deaton & Tortora, 2015) compared to Europe and the West. Invariably, all these have
unique influence on the QoL among PLWE in SSA. However, contemporary epilepsy QoL
6
questionnaires might not be applicable to PLWE in SSA because they are not sensitive of the
culture of the sub-region (Blond et al., 2016). Therefore, the development of an epilepsy QoL
questionnaire particularly for PLWE in Ghana, within SSA, is imperative due the differences
in their culture compared to that of countries in Europe and the West.
1.2 PROBLEM STATEMENT
Like all countries, Ghana has its unique socio-cultural characteristics (Ghana Guide, n.d.).
Ghanaians are religious and mostly identify as Muslims, Christians and Traditionalists. The
social structures are mainly communal living with links to the extended family system.
Traditional folklore and folkways shape our educational system and is reflected in our music,
dance and creative spirit. Inherent in this culture is where Ghanaians find meaning in life
(Dennis, 2018). Ghana also harbours a high prevalence of PLWE (Ministry of Health, 2018).
There is, however, no Ghana specific QoL questionnaire to assess the QoL of PLWE. The use
of generic QoL questionnaires such as EQ-5D and the health index in epilepsy has faced
criticism for their inability to fully assess the impact of epilepsy and do not address all relevant
domains of QoL (Mulhern et al., 2010).
Considering the sociocultural context of existing epilepsy-specific QoL questionnaires, it can
be reasonably argued that these questionnaires are best fit for PLWE in the countries of origin
of the questionnaires and therefore are not necessarily suitable for other countries, including
Ghana. These questionnaires failed to consider the sociocultural context of the lives of people
in Ghana. This is obvious in the wording, context and content of some of the items in these
questionnaires. This underscores the need to develop an epilepsy specific QoL questionnaire
that considers the sociocultural background of people in Ghana due to the significant influence
that sociocultural factors have on the QoL of people.
1.3 RESEARCH QUESTION
What will constitute a culturally sensitive QoL questionnaire for accurately and consistently
assessing the QoL of PLWE in Ghana?
1.4 PURPOSE OF THE STUDY
The purpose of this study was to develop and validate a culturally sensitive QoL questionnaire
that is best suited for accurate and consistent assessment of QoL of PLWE in Ghana.
7
1.5 OBJECTIVES OF THE STUDY
In order to meet the purpose of the study, the study was undertaken in three phases with the
underlisted targeted objectives.
1.5.1 Phase One: Conceptualization phase
1 To explore and synthesize the purpose, concepts, constructs, development process and the
scoring systems of questionnaires used in assessing the QoL of PLWE.
2 To ascertain the QoL of PLWE in SSA from a literature perspective.
3 To explore the meaning of QoL from the perspective of PLWE in Ghana.
Outcome: The outcome of phase one helped to appreciate the concept of QoL among PLWE
and the content of pre-existing epilepsy QoL questionnaires.
1.5.2 Phase Two: Operationalisation phase
1. To select and generate items for the epilepsy QoL questionnaire for Ghana
2. To draft epilepsy QoL questionnaire for Ghana
3. To develop a scale of measurement and final scoring for the epilepsy QoL questionnaire
for Ghana with instructions for use.
4. To conduct an expert review of the draft epilepsy QoL questionnaire for Ghana.
Outcome: The outcome of phase two produced a draft epilepsy QoL questionnaire for Ghana
with appropriate items, scale of measurement and scoring.
1.5.3 Phase Three: Validation phase
1. To test the content validity of the draft epilepsy QoL questionnaire for Ghana
2. To test the face validity of the draft epilepsy QoL questionnaire for Ghana
Outcome: The outcome of phase three was an epilepsy QoL questionnaire with good content
validity for Ghana and ready to be used in community and clinical settings.
1.6 SIGNIFICANCE OF THE STUDY
The outcome of the study provided a questionnaire for accurate assessment that will help in the
provision of quality care for PLWE in Ghana. The qualitative interviews threw more light on
the stigma and socio-cultural burden of epilepsy on PLWE in Ghana. The results presumably
8
will help promote cumulative awareness and understanding of policy makers and the general
population on the effect of epilepsy on the QoL of PLWE. This will potentially persuade policy
makers and health professionals to make changes in policies and practices, respectively, to
improve the QoL of PLWE in Ghana.
The outcome of this study is a QoL questionnaire that is culturally sensitive and fits into the
traditional and socio-cultural context of the Ghanaian population. This questionnaire will
improve the specificity of information by providing domains and items that are tailored to the
QoL of PLWE in Ghana. Hence improving the validity and reliability of future epilepsy QoL
studies conducted in Ghana and within the SSA region. Undoubtedly, the outcome of this
research will provide direction for future research on the QoL of PLWE in Ghana.
1.7 THEORETICAL FOUNDATIONS OF THE STUDY
1.7.1 Meta-theoretical assumptions
Pragmatism is a philosophical movement that was developed in the early 20th century by
William James, Charles Peirce and John Dewey, which dwelt on the practical outcomes of
social reality (Kelly & Cordeiro, 2020). Dewey explained that, if studied carefully and
methodically, pragmatism could reveal more clearly social realities compared to other
philosophical approaches that claim that action and human behaviour exist separate from
understanding (Kelly & Cordeiro, 2020).
Pragmatism focuses on what works in a practical sense, and this mainly refers to the pragmatic
theory about truth which focuses on addressing practical problems in real life other than
dwelling on assumptions about the essence of knowledge (Creswell, 2014). This is concerned
with the belief that one needs to focus on what works for a particular situation at a particular
time and in a particular context. This helps the researcher to explore practical and useful
research methods appropriate for addressing a particular research question. Pragmatists allude
to the fact that quantitative and qualitative research approaches are complementary depending
on which research method is appropriate for addressing a particular research problem at a
particular time (Maarouf, 2019).
In applying both approaches, the qualitative researcher would be interested in detailed
descriptions of the meanings of these actions. On the other hand, quantitative studies address
the research problem in a rather structured quantitative manner which quantifies the
9
phenomenon under study into variables and their relationships (Maarouf, 2019). In answering
the research question on “What will constitute a culturally sensitive QoL questionnaire for
accurately and consistently assessing the QoL of PLWE in Ghana?”, there was the need to
employ a variety of research approaches that were grounded scientifically and practicable
within the research setting. This informed the researcher’s decision to use the pragmatic
paradigm as the philosophical underpinning for this study (Kelly & Cordeiro, 2020).
Through vast literature review on the questionnaires used in assessing QoL in PLWE
worldwide, the researcher gained insight into the content and structure of disease-specific
questionnaires used in assessing the QoL of PLWE. The researcher then conducted an
integrative review on the QoL among PLWE in SSA. This enabled the researcher to understand
the nature of QoL among PLWE in SSA and the significant aspects of QoL among PLWE in
the SSA region. Furthermore, a qualitative study was carried out to explore the meaning of
QoL among PLWE in Ghana. This gave the researcher the chance to identify specific aspects
of life that meant QoL to Ghanaians living with epilepsy. Integration of these studies led to the
development of a proposed QoL questionnaire that is pragmatic and appropriate for evaluating
the QoL of Ghanaians living with epilepsy (Kelly & Cordeiro, 2020).
1.7.2 Theoretical assumptions
Many theories and concepts of QoL exist and have been applied in many situations and
circumstances. Firstly, the socio-economic development concept sees QoL life as economic
growth with indicators such as employment, household income, poverty, cost of living, type
and quality of job, and accommodation, as well as Gross Domestic Product (GDP) (Sirgy,
2011). However, this does not capture the entire aspects of QoL and the GDP aspect has also
been challenged by some researchers. Secondly, the theoretical notion of the personal utility
concept of QoL has birthed many QoL indicators. It describes QoL in terms of the extent to
which people in a community evaluate their lives positively in terms of their social, family,
leisure, spiritual and overall life as well as community conditions and services (Sirgy et al.,
2000). Thirdly, the concept of human development is based on the premise that QoL is attained
when human needs are satisfied in a hierarchical order. Thus, starting from basic human needs
such as health, safety and economic needs as well as higher order needs such as self-esteem
and self-actualization (Maslow, 1954). Finally, the concept of individual capabilities and
functioning is also used to describe quality of life (Sen, 1987, 1999) and describes indicators
such as one’s ability to choose freely between various functions. These functions as referred to
10
as one’s capabilities and how these capabilities enable a person to engage in activities and deal
with situations that one deems as important to his or her life. There are thus many indicators
from theoretical perspectives to study human well-being and QoL.
The integrated QoL theory was deemed the best for this study because it is a combination of
several factual theories about QoL. This is in line with the pragmatic approach adopted as the
philosophical underpinning of the study. Secondly, the IQOL theory also formed the basis of
the development of Danish QoL survey (Ventegodt, 1995, 1997), the SEQOL (Ventegodt et
al., 2003), QOL5, and QOL1 (Lindholt et al., 2002) questionnaires. Therefore, it was deemed
appropriate for the study.
1.7.3 Integrative quality of life theory
The Integrative Quality of Life (IQOL) theory has within it about eight factual theories found
within the subjective existential objective spectrum (Ventegodt et al., 2003). These comprise
theories of satisfaction in life, wellbeing, meaning in life, happiness, realising life potential,
needs fulfilment, biological view of QoL, and objective factors. These are facets of life in a
continuum from the subjective to the objective. The most superficial of all is wellbeing and
objective factors. This is because they focus on the superficial ability of man to adapt to his or
her culture. Partially deep aspects of QoL have to do with the fulfilment of one’s needs and the
satisfaction with life. Thus, the relationship between what one expects in life and what life
gives to the person. Our deepest existence and human nature are the core of happiness and the
realisation of potential in life. Meaning in life, as well as order and disharmony within the
biological information system centres on the innermost being of humanity. The IQOL theory
by Ventegodt et al. (2003) was adopted for this study because is was found to be the most
comprehensive theoretical account of the concept of QoL. Detailed explanation of the
integrative QoL theory is presented in chapter two.
1.8 CONCEPTUAL DEFINITION OF TERMS
People living with epilepsy: Adults from 18-60 years of age who have been diagnosed with
epilepsy excluding those with comorbid mental retardation and psychiatric problems.
Educated people living with epilepsy: Ghanaians living with epilepsy with at least primary
level education and who can speak English or “Twi” (A common vernacular in Ghana).
11
Health outcome: Changes in knowledge, health related quality of life and coping strategies
among PLWE.
Quality of life: The general state of health and functioning of PLWE. These include their
mental health (emotional well-being), socio-cultural functioning, felt stigma, general vitality
(energy/fatigue), role limitations due to emotional problems, general health perception,
physical functioning and role limitations due to physical health problems (Blond et al., 2016).
Quality of care: Sustainable and holistic health care that is safe, timely, equitable, effective
and efficient for PLWE and improves upon their overall outcomes including coping strategies
and QoL (World Health Organisation, 2017).
Coping: Passive pattern of reaction, actively confronting, and palliative reaction, avoidance,
accessing social support, expression of emotions and having reassuring thoughts (Stoilkova et
al., 2013).
Sociocultural: Customs, lifestyles and values that are characteristic of a group of people. In
this study, socio-cultural refers to the values, customs, traditions, social organizations and
lifestyle of people in Ghana.
Sub-Saharan Africa: Sub-Saharan Africa is an area lying south of the Sahara Desert within
the continent of Africa. It comprises 49 countries out of the 54 countries in Africa (Kpodo,
2016).
1.9 METHODOLOGICAL ASSUMPTIONS
This refers to the presumptions that the researcher makes regarding the methodological
approaches used in any research process (Creswell, 2003). The researcher believes that
epilepsy is a chronic and debilitating health problem that invariably affects the QoL of PLWE.
As part of managing PLWE, assessing their QoL helps inform particular interventions to help
improve upon the health and QoL of PLWE. However, the researcher believes that the extent
to which epilepsy affects an individual’s QoL depends on the culture of the society in which
one lives in as. It is assumed that assessment of QoL of PLWE will therefore require the
involvement of PLWE in the development of a culturally sensitive questionnaire that is
appropriate for their cultural setting.
Based on the assumptions above the sequential multimethod research design, involving
quantitative and qualitative approaches in three phases was found to be suitable and hence
12
adopted for the study (Hunter & Brewer, 2015). This offers a flexible and practical means for
combining research designs, whereby any approach that is appropriate for any stage in the
research is applied in order to get the desired results. The multimethod approach also helps
cover the weaknesses of individual research designs by combining them in the same study
(Hunter & Brewer, 2015). The multimethod research design also supports the development and
evaluation of questionnaires. For the purposes of this study, which was to develop a culturally
sensitive QoL questionnaire to assess the QoL of PLWE, this approach is most appropriate.
1.10 OVERVIEW OF RESEARCH DESIGN AND METHODS
This study employed a sequential multimethod design to develop an epilepsy specific QoL
questionnaire for PLWE in Ghana. To achieve the purpose of developing a QoL questionnaire
for PLWE in Ghana, the study was conducted in three phases comprising nine objectives. Table
1.1 presents a summary of the overview of the research design and methods.
13
Table 1.1: An overview of the research methods applied in the study
PHASE 1
(Conceptualisation Phase)
Articles:
1. Synthesis of the concepts
and constructs of
questionnaires used to assess
QoL in PLWE
2. Quality of life in PLWE in
SSA: An integrative review
3. Meanings of QoL among
PLWE in Ghana; A qualitative
exploratory study
Objectives (steps) Design/
Approach
Sample and Sampling Data Collection
Process
Questionnaires Analysis
1. To explore and synthesize the purpose,
concepts, constructs, the development
process and the scoring systems of
questionnaires used in assessing the QoL
of PLWE worldwide
Integrative
literature
review
(Whittemore
& Knafl,
2005)
Peer reviewed and Grey
Literature (Qualitative &
Quantitative articles)
Desk Top Search
Search Engines-CINAHL, PubMed,
ScienceDirect, Psych Info & SCOPUS Meta-synthesis,
Thematic and
Content
Analysis
2. To ascertain the QoL among PLWE in
SSA from a literature perspective.
3. To explore the meaning of QoL from
the perspective of PLWE in Ghana.
Qualitative
exploratory
design
PLWE without comorbid mental
sub normality (18 years and
above)
Purposive sampling
Sample size: saturation
Face-to-face in-
depth interview
Semi-structured
interview guide
PHASE 2 (Operationalisation
Phase)
Articles:
4. The process of developing a
QoL questionnaire for PLWE
4. To select and generate items for the
epilepsy QoL questionnaire for Ghana
5. To draft epilepsy QoL questionnaire for Ghana Based on Stone (1993)’s recommendations on designing a questionnaire.
6. To develop a scale of measurement
and scoring for the epilepsy QoL
questionnaire for Ghana with instructions
for use
Nominal
Group
Technique
(McMillan et
al., 2016).
Experts
Purposive sampling
Sample size: 8 experts
(McMillan et al., 2016).
7. To conduct an expert review of the
draft epilepsy QoL questionnaire for
Ghana
PHASE 3
(Validation Phase)
Articles:
4.Content validity of epilepsy
QoL questionnaire for Ghana
8. To test the content validity of the
draft epilepsy QoL questionnaire for
Ghana
Methodologic
al design
(Grove, Burns,
& Gray, 2013,
pp. 255)
Experts
Purposive sampling
Sample size: 8 experts (Health
Professionals; Academics;
Questionnaire developers)
Email of
questionnaire to
experts for
evaluation
Self-developed
content-validity
questionnaire
Estimation of Content
validity index
Summary and
description of expert
comments
9. To test the face validity of the
draft epilepsy QoL questionnaire for
Ghana
Experts
Purposive sampling
Sample size: 4 experts (PLWE
in Ghana)
Email of
questionnaire
and direct
contact with
patient to
evaluate the
questionnaire
Self-developed
face-validity
questionnaire
Summary and
description of scores
and expert comments
Dissemination: The epilepsy-specific QoL questionnaire for PLWE in Ghana was included in the thesis submitted to the University of Witwatersrand in fulfilment for the degree of Doctor of
Philosophy in Nursing. Research papers will be published in a peer review journal and distributed in soft and hard copies to health educational institutions and nursing organizations across SSA
for utilization.
14
1.11 ORGANIZATION OF THE THESIS
The thesis is organized into eight chapters. Table 1.2 presents the organization of the these in
chapters.
Table 1.2: Structure of the Thesis
PHASE CHAPTER DESCRIPTION
Chapter 1 Background, Rationale and Theoretical foundation
Chapter 2 Conceptual framework and literature Review
Chapter 3 Research Methodology
PHASE ONE:
Conceptualization
phase
Chapter 4
Integrative literature review
one
Purpose, concepts,
constructs, development
process and scoring systems
of questionnaires used in
assessing the QoL of PLWE
Integrative literature review
two
Quality of life of PLWE
Chapter 5 Exploratory qualitative
study
Meaning of QoL among
PLWE in Ghana
PHASE TWO:
Operationalization
phase
Chapter 6 Integration of results from chapters 4 and 5
Nominal group technique
Development of draft QoL questionnaire for PLWE in
Ghana
PHASE THREE:
Validation phase
Chapter 7 Content validity and face validity testing of draft QoL
questionnaire for PLWE in Ghana
Chapter 8 Summary, Strengths, Limitations, Recommendations and
Conclusion
1.12 SUMMARY
This chapter presented a general overview of the background to the study, the problem
statement, purpose, objectives and research questions for the study. Justification of the
significance of the study as well as a description of theoretical foundations of the study,
conceptual definition of terms for the study in addition to the general overview of the research
15
methods and the manner in which the rest of the chapters are presented in this chapter. The
theoretical framework and literature review are presented in the next chapter.
16
CHAPTER TWO: LITERATURE REVIEW AND CONCEPTUAL FRAMEWORK
2.1 INTRODUCTION
The chapter presents a review of literature on the experience of living with epilepsy. This is
followed by a description of the Integrative Quality of Life (IQOL) theory as the framework
for this study. The IQOL theory was used to identify key constructs that were examined for the
purposes of this study. Furthermore, arranging and grouping the identified concepts provided
meaning and direction for the structure and the development process of the Quality of Life
(QoL) questionnaire for PLWE in Ghana. The concept of QoL is then explained in the chapter
followed by a chapter summary.
2.2 LIVING WITH EPILEPSY
Living with epilepsy influences almost every aspect of one’s life. The physical effect of living
with epilepsy also affects one’s activities of daily living which have an impact on their
socioeconomic lives (Akosile et al., 2021; Gauffin et al., 2011). People living with epilepsy
also have concerns about public knowledge and perception about the condition (Deegbe et al.,
2019; Gauffin et al., 2011; Nurjannah et al., 2020). This also affects them psychologically and
emotionally and has a ripple effect on their relationship with others (Deegbe et al., 2019;
Fazekas et al., 2021).
2.2.3 Physical effect
There are many physical effects that PLWE experience. Seizures cause migraines and
headaches (Fazekas et al., 2021). Fatigue is also a common experience among PLWE (Akosile
et al., 2021; Fazekas et al., 2021). This leads to low performance at work and in school as well
as love ambition among PLWE (Akosile et al., 2021; Gauffin et al., 2011). An increase in the
frequency and severity of seizures contribute in poor QoL among PLWE (Akosile et al., 2021;
Gauffin et al., 2011; Kaddumukasa et al., 2019). Increased seizure severity has also been linked
to more severe injuries and even abortions among pregnant women with epilepsy (Deegbe et
al., 2019). Seizures also occur at night. Having seizures in sleep makes night time very
unpleasant for PLWE and raises a lot of concerns for PLWE (Fazekas et al., 2021).
The intake of antiepileptic medication is a necessity for PLWE (Rawlings, Brown, Stone, et
al., 2017). The ability of the medication to control the seizures of PLWE makes them happy
and cheerful. However, side effects of antiepileptic medications such as heartburns, nausea,
17
fatigue, memory loss are not uncommon and this makes them even more depressed (Fazekas
et al., 2021). In Ghana PLWE sought for traditional and spiritual treatment for their epilepsy
either separately or as an addition to their orthodox antiepileptic medications (Deegbe et al.,
2020). The seizures and side effects of antiepileptic medications affect activities of daily living
of PLWE.
2.2.4 Activities of daily living
The frequency and severity of seizures affect activities of daily living of PLWE. In the UK,
and Sweden, PLWE who used to drive had concerns about not being able to drive because of
the diagnosis of epilepsy (Gauffin et al., 2011; Kılınç et al., 2017). Studies in Ghana and the
UK also shows that PLWE are restricted, either by family or through medical advice, not to
stress themselves with house chores such as cooking or bathing without supervision or
assistance (Deegbe et al., 2019; Kılınç et al., 2017). These restrictions cause a sense of loss of
independence among PLWE(Kılınç et al., 2017) which invariably affects their socioeconomic
lives.
2.2.5 Socioeconomic effect
Epilepsy serves as a barrier to progress in life among PLWE. Unlike others, PLWE find it
difficult in making plans and setting goals for their lives since all these decisions need to take
their seizures into consideration. This results in lifestyle changes and adjustments, many of
which are uncomfortable (Gauffin et al., 2011). People living with epilepsy have difficulty
with advancement in their education, career choices and progression and family life, including
decisions to make children (Gauffin et al., 2011). In Nigeria, PLWE found it difficult to attain
tertiary education and had difficulty securing a job (Akosile et al., 2021). In Ghana, PLWE had
their work and school activities disrupted by seizures. Those who could not cope unfortunately
had to leave school midway (Deegbe et al., 2019). In addition, PLWE feel that they have to
expend as much as more than twice the effort that others make in order to achieve academic
success, get a good job and move on ahead in life (Gauffin et al., 2011). A commonly expressed
goal among PLWE is to live a normal life as any other person without allowing the condition
to restrict them. However, feelings of restriction and limitations in the ability to perform
responsibilities as adults makes PLWE sad, and disturbed with lowered self-esteem (Gauffin
et al., 2011).
18
The onset of epilepsy has a life-changing effect on PLWE, even to the extent of changing one’s
identity (Rawlings et al., 2017). Thus, one’s perception of who he or she is. Whilst it was
mostly detrimental in the lives of many PLWE, it also has a positive effect in the lives of a few
PLWE. Epilepsy interferes in the course of people’s lives however, a few PLWE are able to
cope well by readjusting their goals and future plans because of the diagnosis of epilepsy and
were able to move on in life (Kılınç et al., 2017). However, for many people, epilepsy has a
negative effect on their personality, an obstacle to their personal development, and changing
the way they perceived they would have developed in life (Gauffin et al., 2011). Some had to
give up their dreams of advancement in education and career progression. However, persons
without already established future plans and those who might have already achieved their goals,
in the case of adult onset epilepsy, are easily able to accept and adapt to the condition (Kılınç
et al., 2017).
2.2.6 Public knowledge and perception about epilepsy
Concerns about poor public knowledge about epilepsy is very common. This has been reported
in studies in Sweden (Gauffin et al., 2011), Indonesia (Nurjannah et al., 2020), UK, Spain,
France, Italy, and Germany (Fazekas et al., 2021) and Ghana (Deegbe et al., 2019). In Sweden
PLWE could not understand what was happening to them, felt their seizure symptoms were
strange and wondered how people would understand them (Gauffin et al., 2011). Epilepsy is
actually misunderstood by the public and this is worsened by poor media depiction of the
condition, with some even make fun of epilepsy (Fazekas et al., 2021). Due to this, people do
not have knowledge on how to give first aid for seizures (Fazekas et al., 2021) as such, they
are unable to provide first aid for victims during a seizure episode in public. They end up
becoming onlookers rather than active participants in helping PLWE in their crises moments
(Gauffin et al., 2011). This makes the lives of PLWE unsafe for them in public, because of the
fear of not receiving adequate help during seizures outside home (Gauffin et al., 2011). This is
an indication of the psychological and emotional challenges that PLWE face.
2.2.7 Psychological and emotional experiences
Fears and worries about having seizures in public represent an ever present threat lingering in
the minds of PLWE and causing undue anxiety in them (Deegbe et al., 2020; Fazekas et al.,
2021). The thought of people mocking them, becoming scared of them, or being helpless at the
sight of them having seizures in public filled PLWE with dread.
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The sudden and unpredictable nature of seizures as well as fears of getting injured during a
seizure episode makes PLWE even more anxious (Kılınç et al., 2017). This makes PLWE have
a feeling of lack of control over their seizures, which undermines their self-esteem and
confidence in carrying out daily activities (Kılınç et al., 2017). They also feel embarrassed and
ashamed of having seizures in public (Deegbe et al., 2019; Fazekas et al., 2021). The thought
of being labelled crazy or mentally ill, and soiling of self during a seizure episode caused
further embarrassment (Deegbe et al., 2019; Fazekas et al., 2021; Gauffin et al., 2011).
People living with epilepsy also experience general loss of memory and can become disoriented
with time (Arinzechi et al., 2019; Fazekas et al., 2021; Gauffin et al., 2011). Memory
impairment is also attributed to side effects of anti-epileptic medication. Activities of daily
living among PLWE is affected by memory decline which sometimes get them into some
embarrassing situations (Gauffin et al., 2011). This is one of the reasons PLWE find it difficult
to get a good job.
These challenges make PLWE have to do much for little making life difficult for them to live
up to their expectations (Gauffin et al., 2011). Frequent and uncontrolled seizures also make
them frustrated (Kılınç et al., 2017). As a result of this, PLWE have difficulty with their mental
health and often are depressed (Fazekas et al., 2021), which affects their relationship with
people.
2.2.8 Relationship with people
Some PLWE end up putting limitations on themselves in order to keep them safe from seizures.
These include restrictions from social gatherings and alcohol, and not driving leading to
increased social isolation (Fazekas et al., 2021). Persons with epilepsy are also concerned about
the strain the condition has on their family and friends. They feel they are a burden on their
relations and this makes them feel a sense of guilt, with women becoming particularly
concerned about how this would affect their children (Gauffin et al., 2011). Persons living with
epilepsy also find it difficult to find and sustain friendships – further increasing their isolation
from society (Gauffin et al., 2011).
Inevitably PLWE end up with difficulty in establishing a love relationship although they wish
to have a partner to start a family with together (Deegbe et al., 2019; Gauffin et al., 2011). In
Ghana some women with epilepsy even end up getting pregnant however, their partners end
up not marrying them due to personal fears about the condition or disapproval from their
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partner’s family members (Deegbe et al., 2019). They end up remaining single or becoming
single parents.
Limitations in life placed on them by epilepsy makes PLWE end up becoming dependent on
others, particularly parents and family members, for help (Fazekas et al., 2021; Gauffin et al.,
2011). However, continual dependence on others for help can become frustrating for PLWE
(Gauffin et al., 2011).
Misconceptions about epilepsy lead to stigmatising and discriminatory behaviours towards
PLWE (Deegbe et al., 2019; Nurjannah et al., 2020; Rawlings, Brown, Stone, et al., 2017).
Friends are no longer in touch as they used to be before the diagnosis of epilepsy (Deegbe et
al., 2019; Rawlings, Brown, Stone, et al., 2017). Others now look down upon them and do not
regard their opinions as worthy, which contributes in the sorrow and frustrations of PLWE
(Gauffin et al., 2011). Increased stigma and discriminatory behaviours towards PLWE are not
only reported in Ghana (Adjei et al., 2018; Deegbe et al., 2019) but also in the UK (Rawlings
et al., 2017), Sweden PLWE (Gauffin et al., 2011), to mention but, a few. Thus, further
complicating their chances of employment and further education (Adjei et al., 2018).
2.3 CONCEPTUAL FRAMEWORK
The current study was guided by IQOL theory developed by Ventegodt et al. (2003). This
served as the philosophical and the theoretical framework that guided the development of the
Danish QoL survey (Ventegodt, 1995, 1997), the Self evaluated Quality of Life (SEQOL)
(Ventegodt et al., 2003), QOL5, and QOL1 (Lindholt et al., 2002) questionnaires. This
informed the researcher’s decision to adopt this framework for the study. The notions about
QoL can be grouped into three aspects of good life namely; Subjective QoL, Existential QoL
and Objective QoL. In the IQOL theory, these three aspects of QoL across these three groups
are placed in a spectrum with existential QoL at the centre representing the core of the being
of humanity (Figure 2.1).
A number of QoL theories are incorporated in the spectrum from the subjective QoL through
the existential core to the objective QoL. Quality of life is thus, a complex phenomenon of
interacting objective and subjective parts (Lawton, 1991). These include theories of (1) Well
Being, (2) Satisfaction with Life, (3) Happiness, (4) Meaning in Life, (5) Biological View of
the Quality of Life, (6) Realizing Life Potential, (7) Fulfilment of Needs, and (8) Objective
Factors (Ventegodt et al., 2003). The ensuing paragraphs elaborate more on these theories.
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Figure 2.1: The Integrative Quality of Life Model by Søren Ventegodt et al. (2003)
2.3.3 Subjective Quality of Life
Subjective QoL refers to how good one feels about the life that he or she has. Each individual
evaluates his or her life in relation to their perception about their life and how they feel about
life. People’s appraisal of their level of contentment or happiness in life is subjective QoL.
2.3.3.1 Wellbeing
Wellbeing is the most natural aspect of subjective QoL which involves an individual’s
assessment of his or her own QoL (Cella & Tulsky, 1993). This is elicited in response to the
questions “How are you” or “How is life”. Such responses do not require any deeper
explanation but rather a mere superficial description one’s evaluation of QoL.
The response to a question on wellbeing may be followed by an explanation which may be an
extension of one’s response. For example, “Things are not going too well at home/work” or
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“My health is not what is used to be”. Thus, an indication that wellbeing is related to one’s
evaluation of how things function objectively. Therefore, wellbeing is more superficial than
meaning in life, self-realisation and the fulfilment of one’s needs. However, Cummins et al.
(2012) explained that much studies on subjective wellbeing is about people rating their own
happiness or satisfaction with socially related factors such as income or events in life.
2.3.3.2 Satisfaction with Life
People most of the time may indicate that something is missing when asked about their
satisfaction with life. An individual may feel good but may actually not be very satisfied, or
perhaps just be satisfied. In general, people are commonly less satisfied in life compared to
their overall state of wellbeing. Satisfaction is a cognitive entity which is realised when one’s
expectations in life are met. This may be grouped into other aspects including satisfaction with
income, health or work (Thieme & Dittrich, 2015).
In order to achieve satisfaction in life, one may either make adjustments in the external world
to meet up with their dreams and aspirations or one may alter their dreams and aspirations to
be in line with the world they live in. In both ways, satisfaction is realised as dreams and
aspirations are met by the external world. However, the two lives are different although
satisfaction is met. One life feels umpty and unhappy because their true dreams and aspirations
have been given up, although they are satisfied. The other life is lived in true happiness and
satisfaction because one finds meaning in life by living up their true dreams and aspirations.
Thus, being satisfied in life cannot be equated to finding meaning in life. Therefore, good life
is more than merely being satisfied in life (Seligman, 2011).
2.3.3.3 Happiness
Cheerfulness and contentment cannot be equated to happiness in life. The feeling of happiness
is very precious, very desirable, but difficult to attain. Happiness is an essence that is deep
within an individual and encompasses an individual’s entire existence. Happiness also comes
along with satisfaction and wellbeing (Seligman, 2011). Although related, happiness is not
always about being in harmony with nature such as adapting to culture and its associated factors
(Ventegodt, 1995). But, involves being able to achieve deep down what is important to an
individual. This is related to nonrational dimensions in life including love, closeness with
nature, to mention but a few other than money or the state of one’s health.
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These concepts of wellbeing, satisfaction in life and happiness, although are described as
separate, they also overlap and link up with each other. Happiness is a positive emotion
(Seligman, 2011) which is described as a key determinant of wellbeing (Coffey et al., 2015).
Moreover, both happiness and wellbeing have positive relationship with satisfaction in life
(Cohn & Fredrickson, 2009).
2.3.3.4 Meaning in Life
The theme of classical religion is finding meaning in life. In the quest for meaning in life,
people view the value of all aspects of life differently. Finding meaning in life also refers to
the attainment of a sense of purpose from something that is bigger than oneself (Steger et al.,
2009). People then tend to question the meaningfulness of their relationships with others;
question whether there are really doing the right things in life; whether they have got the right
job; whether they are using their talents the way they should; and question the truthfulness of
their beliefs. In an attempt to find meaning in life, one must accept the meaningfulness and the
meaninglessness of life and be ready to make amends for that which is meaningless. This is a
deeply personal experience that a few people seek to achieve. A sense of fulfilment is therefore
achieved when people find meaning in life (Seligman, 2011).
2.3.4 Existential Quality of Life
One’s appraisal of how good life is from deep within is existential QoL. There is an assumption
that one has a deeper nature or essence that one lives in harmony with, that needs to be
respected. This is a state of an inner depth in humanity or the state of one’s soul which is
described by thinkers such as Satre, Anotonovsky and Maslow (Lindholt et al., 2002).
2.3.5 Objective Quality of Life
The appraisal of one’s life by the outside world is one’s objective QoL. This is associated with
the culture of people. Objective QoL has little to do with one’s personal life but mainly refers
to the ability of an individual to adapt to cultural values such as attaining certain social symbols
to be a good member of one’s society and culture. These are characteristics that can be easily
rated by others externally.
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2.3.5.1 A Biological View of the Quality of Life: the Biological Information System and
the State of Existential Balance
The biological aspect of QoL is the biological constitution of humans. Humans are living
organisms. One’s physical health is a reflection of the person’s biological information system
because the cells and organs in the body require correct information in order to function
normally and healthy. The link between QoL of illness has deep existential grounding relating
to one’s state of health and soul and not merely about how good one feels (Ventegodt, 1994,
2003). This implies that if one loses meaning in life, he or she is easily susceptible to ill health
without a cause. The relationship between QoL and illness is therefore best demonstrated using
the theory of an individual as a biological information system.
2.3.5.2 Realizing Life Potential
Growth and development among humans are a continuous and constant process. This begins
with a fertilised egg with enough potential which grows to fulfil this potential in life. Therefore,
a key component of QoL is the realization of one’s potential in life. Thus, using one’s talent to
the full, becoming creative, getting a meaningful job, starting a family and reaching one’s
ultimate goal in life. Seligman (2011) describes this as a drive to achieve a goal for one’s own
sake. This attribute is however not concerned with the outcome of realizing potential but rather
the attitude of perseverance to achieve one’s potential or goal in life (Kern et al., 2014).
2.3.5.3 Fulfilment of Needs
This theory posits that one’s QoL increases with the fulfilment of needs in life. These needs
are a representation of the nature of humans. These are also evident in Maslow’s hierarchy of
needs theory (Maslow, 1943). These begin from concreate needs such as food, shelter and
clothing to more abstract needs such as self-esteem and the need to realise one’s self.
Fulfilment of needs is a very important stage between the deep existential core of humans and
the superficial objective phenomena as illustrated in the IQOL theory spectrum. This need is
linked to the satisfaction of having our needs met. The subjective aspect here is satisfaction
which is situated between the existential core of one’s being and the superficial aspects of life.
The fulfilment of needs is not the same as wellbeing. This is because needs are related to human
nature. However, we feel good once our needs have been met. This however, is also not the
same as the realisation of life’s potential which takes its root from realising one’s biological
information. This is a complex phenomenon that cannot be reduced to simple actual needs
(Ventegodt et al., 2003).
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2.3.5.4 Objective Factors
Objective factors of quality of life represent external factors that are easily identifiable
(Boelhouwer & Noll, 2014). These include one’s health status, marital status, income, and
number of daily contacts with people. Usually, people confuse a good life with the kind of life
that is general considered as right or rich. Thus, a rich man may be unhappy, but a poor man
may be happy. There is also discrepancy in a physician’s evaluation of a patient’s QoL
compared to the patient’s self-evaluation of his or her QoL. Objective QoL is linked to one’s
culture. Thus, the ability of one to adapt to his or her culture reflects one’s objective QoL and
this is similar to wellbeing (Ventegodt et al., 2003).
2.4 CONCEPT OF QUALITY OF LIFE
Quality of life of PLWE and their families is negatively impacted by epilepsy stigma and the
nature of the disease (Deegbe et al., 2020; World Health Organisation, 2019). The epilepsy
stigma still remains in many countries till date. Social stigma and discrimination in relation to
the misconceptions and fears about epilepsy have been in existence for centuries.
2.4.1 Health Status
According to the WHO, health is “a state of complete physical, mental and social well-being,
and not merely the absence of disease and infirmity”. The main aspects of the WHO definition
of health are the incorporation of the concept of social wellbeing as well as their emphases on
health beyond the absence of disease. On the other hand, Patrick et al. (1982) defines health as
“an individual’s level of function”, where conclusions about one’s “optimum function” are
made based on “society’s standards of physical and mental well-being” thus, excluding social
wellbeing.
2.4.2 Quality of Life
Approaches to how QoL is defined differ (Ferrans, 1990). Some approaches are based on
expectations, personal needs, phenomenological viewpoints and subjective wellbeing
(Bowling, 2005). Another school of thought on wellbeing attempts to distinguish between
approaches based on hedonism, satisfaction of preferences, satisfaction in life and objective
lists (Peasgood et al., 2014). Examples of some definitions of QoL are: “a conscious cognitive
judgment of satisfaction with one’s life” (Rejeski & Mihalko, 2001) and “an individuals’
perception of their position in life in the context of the culture and value systems in which they
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live and in relation to their goals, expectations, standards and concerns” (Kuyken & Group,
1995).
Although most of these definitions of QoL are mostly focused on the subjective judgements of
people others have argued strongly for the inclusion of objective factors in the definition of
QoL (Cummins, 2005; Felce & Perry, 1995; Meeberg, 1993). For example, QoL has been
defined as “an overall general well-being that comprises objective descriptors and subjective
evaluations of physical, material, social, and emotional well-being together with the extent of
personal development and purposeful activity, all weighted by a personal set of values” (Felce
& Perry, 1995).
2.4.3 Health-Related Quality of Life
Defining Health-Related Quality of Life (HRQoL) has also been problematic (Bowling &
Brazier, 1995). At least mention can be made of four definitions of HRQoL in literature. It is
first defined as “how well a person functions in their life and his or her perceived wellbeing in
physical, mental, and social domains of health” (Hays & Reeve, 2010). Functioning is
described as one’s ability to do some pre-fined activities whereas wellbeing is described as an
individual’s subjective feelings (Hays & Reeve, 2010). Another definition relates HRQoL
directly to QoL: “quality of life is an all-inclusive concept incorporating all factors that impact
upon an individual’s life. Health-related quality of life includes only those factors that are part
of an individual’s health” (Torrance, 1987). However, aspects of QoL such as political and
economic circumstances, that are not health related are not included in the definition of
HRQoL(Torrance as cited in Karimi & Brazier, 2016).
The aspects of QoL affected by health are the focus of a third definition of HRQoL. Thus,
HRQoL is defined as “those aspects of self-perceived well-being that are related to or affected
by the presence of disease or treatment” (Ebrahim, 1995). A narrower version of this definition
of HRQoL is where HRQoL “is used to identify the sub-set of the important or most common
ways in which health or health care impact upon well-being” (Peasgood et al., 2014).
One last definition of HRQoL is centred on the value of health. For example, HRQoL is referred
to as the “values assigned to different health states” (Gold et al., 1996, p. 83). The estimation
Quality-Adjusted Life-Years (QALYs) is based on these values in order to determine the
benefits accrued form health technologies. These values used in the estimation of QALY are
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on a scale of 0 to 1 representing death and full health, respectively (Gold et al., 1996). Values
that are lower than one represent a loss of QoL due to ill health (Gold et al., 1996).
2.4.4 Quality of life and health related quality of life
In fact “quality of life is more than health status, clinical symptoms, or functional ability, health
is only one dimension of quality of life” (Ferrans, 1990). All of earlier definitions of QoL can
be are influenced by non-health related factors including economic and material factors (Guyatt
et al., 1993). Although life satisfaction is influenced by health, the status of health explains just
a small portion of satisfaction outcomes in life (Michalos, 2004). Thus, an indication that health
and QoL are distinct concepts. Earlier definitions of HRQoL are either a sub-set of the
definition of health or mirror the value of health. However, the profile associate with one’s
state of health and not that value associated with the profile is referred to as HRQoL. This
underscores the need to assess what typical HRQoL questionnaires actually measure.
Calman explained that “Quality of life must include all areas of life and experience and take
into account impact of illness and treatment” (Calman, 1984, p. 124-125). Health related QoL
is about the effect that illness and treatment of illness have on one’s QoL. Quality of life
however, extends beyond illness related factors to include economic status, environment and
social interaction/participation/support influence on a person to have a happy life.
In order to understand what literature portrays of QoL of PLWE, an integrative review is
presented in the chapter four. Because QoL for PLWE is so important, a number of measures
have been developed and these are presented in the form of a scoping review in chapter four.
2.5 SUMMARY
This study is driven by the pragmatic paradigm which is based on the concept of addressing
practical problems and this makes no distinction between approaches to research but one that
practically addresses a particular research problem at a point in time. The theoretical
framework for the study was the IQOL theory. This theory integrated eight quality of life
theories including theories of (1) Well Being, (2) Satisfaction with Life, (3) Happiness, (4)
Meaning in Life, (5) Biological View of the Quality of Life, (6) Realizing Life Potential, (7)
Fulfilment of Needs, and (8) Objective Factors. This served as the theoretical bases for some
already existing QoL questionnaires and incorporates the concepts of subjective, existential
and objective quality of life. The concept of QoL was also described in this chapter and the
28
effect that epilepsy has on QoL is also mentioned in this chapter. The following chapter
describes the research methods and processes applied to the study.
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CHAPTER THREE: METHODOLOGY
3.1 INTRODUCTION
The previous chapter presented a review of literature and the conceptual framework f