SCHOOL OF NURSING AND MIDWIFERY COLLEGE OF HEALTH SCIENCES UNIVERSITY OF GHANA, LEGON DETERMINANTS OF QUALITY OF LIFE AMONG WOMEN LIVING WITH CERVICAL CANCER IN THE ACCRA METROPOLIS BY AKUGRI ABANDE FRANCIS (10294762) THIS THESIS IS SUBMITTED TO THE UNIVERSITY OF GHANA, LEGON IN PARTIAL FULFILMENT OF THE REQUIREMENT FOR THE AWARD OF MASTER OF PHILOSOPHY DEGREE IN NURSING JULY, 2017 Determinants of Quality of Life of women Living with Cervical Cancer DECLARATION I, Akugri Abande Francis, honestly hereby declare that this thesis work is my personal and original research towards the award of Master of Philosophy Degree in Nursing, School of Nursing and Midwifery, University of Ghana. Truly it contains no material previously published by another person except the books, articles and references of people’s works from which I got the necessary information to support my work, which have been duly acknowledged. The study was undertaken under the guidance and supervision of Dr. Florence Naab and Professor Ernestina Donkor, both of the School of Nursing and Midwifery, University of Ghana. Akugri Abande Francis ..................... .................... (10294762) Signature Date i Determinants of Quality of Life of women Living with Cervical Cancer CERTIFICATION We hereby certify that this thesis was supervised in accordance with the procedures laid down by the University of Ghana. We therefore recommend for its acceptance. Dr. Florence Naab ...……………. ………………… (Supervisor) Signature Date Professor Ernestina Donkor ..……………... ......….……....… (Co-Supervisor) Signature Date ii Determinants of Quality of Life of women Living with Cervical Cancer ABSTRACT Cervical cancer is an abnormal growth or tumour of the cervix, often predisposed by Human Papilloma Virus (HPV) and other factors. Cervical cancer is the third most frequent cancer among women globally with about 527,624 cases diagnosed and 265,672 mortalities annually. It is the leading cause of cancer death among women in Ghana. Women living with cervical cancer are affected psychologically, physically, socially, sexually, spiritually and in many forms, after they are diagnosed with the disease. Coping with their spouses, partners, families, friends and continuous integration into the community in which they live become a major task. This study investigated into the determinants of quality of life among women diagnosed with cervical cancer in Ghana. A quantitative approach using a cross-sectional design was used for the study. A total sample size of 176 participants who met the inclusion criteria were recruited for the study. The statistical package for social science (SPSS) version 20.0 was utilised for the data analysis, and descriptive statistics, multiple linear regressions and Pearson’s correlation were computed. The results revealed that, the overall quality of life of the women was moderate (Mean= 3.54, SD=0.70) and symptom status was high (Mean=3.21, SD=0.61), daily functional activities was good (Mean=3.41, SD=0.51) but with high general health perceptions of the women about their illness (Mean= 2.81 SD=0.64). Finally, only environmental characteristics (p=0.008) and age (p=0.028) from the individual characteristics were significant in predicting the overall quality of life of women living with cervical cancer. These findings have implications for nursing and midwifery practice on clinical care, for policy formulation for a substantive policy on cancer treatment and funding for cervical cancer as well as for future research on the socioeconomic status and treatment modalities of these women. iii Determinants of Quality of Life of women Living with Cervical Cancer Key words: Cervical cancer, environmental characteristics, functional status, general health perceptions, individual characteristics, Quality of life, symptom status iv Determinants of Quality of Life of women Living with Cervical Cancer DEDICATION This study is dedicated to my family most especially my father Akugri Abande Yaw and My mother Nongmam Apeligib Abugre for their love, encouragement and support. As my father will always call and ask, “Are you putting efforts in your course? Never worry, my ancestors are with you and it will be okay for you, so do not worry much about the suffering, with God you have already finished in advance”. These words were my source of energy. v Determinants of Quality of Life of women Living with Cervical Cancer ACKNOWLEDGEMENT I wish to thank the Almighty God who has always blessed me with the determination and strength to undertake this study. I am highly indebted to the Dean, Lecturers and Staff of the School of Nursing and Midwifery, University of Ghana, Legon for their mentorship, coaching and guidance. Especially, my deepest gratitude and appreciation goes to my supervisors, Dr. Florence Naab and Professor Ernestina Donkor whose meticulous guidance and expertise made this thesis work possible and meaningful. I am also grateful to the women who participated in the study. I render my heartfelt thanks to Mr James Avoka Asamani and Mr Adam Joseph for their time, suggestions and constructive criticisms which helped to make this work presentable. I would also like to thank the heads and staff of the respective hospital units for their support during the study. I acknowledge and express my appreciation to all those who made this work possible. vi Determinants of Quality of Life of women Living with Cervical Cancer TABLE OF CONTENTS DECLARATION ............................................................................................................ i CERTIFICATION ......................................................................................................... ii ABSTRACT ................................................................................................................. iii DEDICATION ............................................................................................................... v ACKNOWLEDGEMENT ............................................................................................ vi TABLE OF CONTENTS ............................................................................................. vii LIST OF FIGURES ....................................................................................................... x LIST OF TABLES ........................................................................................................ xi LIST OF ABBREVIATIONS ...................................................................................... xii CHAPTER ONE: INTRODUCTION ............................................................................ 1 1.1 Background of the Study ..................................................................................... 1 1.2 Problem Statement ............................................................................................... 6 1.3 Purpose of the Study ............................................................................................ 9 1.4. Research Questions ............................................................................................. 9 1.5 Significance of the Study ................................................................................... 10 1.6 Operational Definitions of Terms ...................................................................... 10 CHAPTER TWO: THEORETICAL FRAMEWORK AND LITERATURE REVIEW ...................................................................................................................................... 12 2.1 The Revised Wilson-Cleary Conceptual Model of Health-Related Quality of Life ........................................................................................................................... 12 2.1.1 Biological Functions of Health-Related Quality of Life Conceptual Model .............................................................................................................................. 16 2.1.2 Symptom Status of the Model..................................................................... 16 2.1.3 Functional Status of the Model ................................................................... 16 2.1.4 General Health Perceptions of the Model ................................................... 17 2.1.5 Individual Characteristics of the Model ...................................................... 18 2.1.6 Environmental Characteristics of the Model .............................................. 19 2.2 The Quality of Life Concept .............................................................................. 19 2.3 Overview of Cervical Cancer ............................................................................. 22 2.4 Empirical Review of Related Literature ............................................................ 25 2.5 Quality of Life of Women Living with Cervical Cancer ................................... 25 2.6 Symptom Status of Women Living with Cervical Cancer and QoL ................. 32 2.7 Functional Status of Women Living with Cervical Cancer and QoL ................ 36 2.8 General Health Perception of Women Living with Cervical Cancer and QoL . 39 2.9 Individual Characteristics of Women Living with Cervical Cancer and QoL... 42 2.10 Environmental Characteristics of Women Living with Cervical Cancer and QoL .......................................................................................................................... 45 2.11 Summary of Literature Review ........................................................................ 46 vii Determinants of Quality of Life of women Living with Cervical Cancer CHAPTER THREE: RESEARCH METHODOLOGY .............................................. 49 3.1 Design of the Study ............................................................................................ 49 3.2 Research Setting................................................................................................. 50 3.3 Target Population ............................................................................................... 52 3.4 Inclusion Criteria ............................................................................................... 52 3.5 Exclusion Criteria .............................................................................................. 52 3.6 Sample Size Determination................................................................................ 52 3.7 Sampling Technique .......................................................................................... 54 3.8 Research Instruments ......................................................................................... 54 3.8.1 Demographic Variables .............................................................................. 55 3.8.2 Quality of Life Index- Cervical Cancer Version III (Ferrans & Powers, 1984) .................................................................................................................... 55 3.8.3 Symptom Index (Weisbord et al., 2004) ..................................................... 57 3.8.4 Inventory of Functional Status- Cervical cancer (Thomas-Hawkins, 2005) .............................................................................................................................. 58 3.8.5 General Health Perceptions Questionnaire – 28 (GHQ-28) (Goldberg, 1978; .................................................................................................................... 59 Sterling, 2011)...................................................................................................... 59 3.9 Reliability and Validity of the instrument ......................................................... 59 3.10 Data Collection Procedure ............................................................................... 60 3.11 Data Management and Analysis ...................................................................... 62 3.12 Ethical Consideration ....................................................................................... 62 CHAPTER FOUR: FINDINGS ................................................................................... 64 4.1 Demographic Characteristics of Participants ..................................................... 64 4.2 Environmental Characteristics of Women Living with Cervical Cancer .......... 64 4.3 Quality of Life of Women Living with Cervical Cancer ................................... 66 4.4: Symptoms Status of Women Living with Cervical Cancer and QoL ............... 66 4.5 Functional Status of Women Living With Cervical Cancer and QoL ............... 70 4.6 General Health Perceptions of Women Living with Cervical Cancer and QoL 73 4.7 Relationship between Symptom Status, Functional Status, General Health Perception and QoL of the Women ......................................................................... 77 4.8: Influence of Demographic Characteristics, Symptom Status, Functional Status, General Health Perception and Environmental Characteristics on QoL ................. 78 4.9 Summary of Results ........................................................................................... 82 CHAPTER FIVE: DISCUSSION OF FINDINGS ...................................................... 85 5.1 Demographic /Individual Characteristics .......................................................... 85 5.2 Environmental Characteristics of Women Living with Cervical Cancer and QoL .................................................................................................................................. 86 5.3 Quality of Life of Women Living with Cervical Cancer ................................... 87 5.4 Symptom Status of Women Living with Cervical Cancer and QoL ................. 89 5.5 Functional Status of Women Living with Cervical Cancer and QoL ................ 92 5.6 General Health Perceptions of Women Living with Cervical Cancer and QoL 92 viii Determinants of Quality of Life of women Living with Cervical Cancer 5.7 Relationship between Symptom Status, Functional Status, General Health Perception and QoL of the Women ......................................................................... 93 5.8 Influence of Demographic Characteristics, Symptom Status, Functional Status, General Health Perception and Environmental Characteristics on QoL ................. 94 CHAPTER SIX: SUMMARY, IMPLICATIONS, LIMITATIONS, CONCLUSIONS AND RECOMMENDATIONS ................................................................................... 96 6.1 Summary of the Study ....................................................................................... 96 6.2 Implications of the study .................................................................................... 98 6.2.1 Nursing and Midwifery Practice ................................................................. 98 6.2.2 Policy Formulation...................................................................................... 99 6.2.3 Future Research .......................................................................................... 99 6.3 Limitations of the Study..................................................................................... 99 6.4 Conclusion of the Study ................................................................................... 100 6.5 Recommendations ............................................................................................ 100 6.5.1 To Ministry of Health (MOH) .................................................................. 100 6.5.2 Ministry of Gender, Children and Social Protection ................................ 101 6.5.3 Ghana Health Service and Christian Health Association of Ghana .......... 101 6.5.4 To Nursing and Midwifery Researchers ................................................... 102 REFERENCES .......................................................................................................... 103 APPENDICES ........................................................................................................... 114 Appendix A: Research Questionnaire .................................................................... 114 Appendix B: Ethical Clearance from Noguchi Memorial Institute for Medical Research ................................................................................................................. 123 Appendix C: Ethical Clearance from Korle-Bu Teaching Hospital ...................... 124 Appendix D: Departmental Approval Letters from School of Nursing and Midwifery .............................................................................................................. 125 Appendix E: Consent Form ................................................................................... 127 ix Determinants of Quality of Life of women Living with Cervical Cancer LIST OF FIGURES Figure 1: Revised Wilson and Cleary’s (1995) Model of Health-Related Quality of Life (Ferrans et al., 2005). ........................................................................... 15 x Determinants of Quality of Life of women Living with Cervical Cancer LIST OF TABLES Table 2.1: Classification of Cervical Cancer ............................................................... 23 Table 4.1: Demographic Characteristics of the Participants ........................................ 64 Table 4.2: Environmental Characteristics of Women Living With Cervical Cancer .. 65 Table 4.3: Quality of Life of Women Living With Cervical Cancer ........................... 66 Table 4.4: Symptom Status of Women Living With Cervical Cancer ........................ 69 Table 4.5: Functional Status of Women Living With Cervical Cancer ....................... 72 Table 4.6: General Health Perception of Women Living With Cervical Cancer ........ 75 Table 4.7: Correlation between Symptom Status, Functional Status, General Health Perception and QoL of the Women ............................................................. 78 Table 4.8: Influence of Demographics (Individual) Characteristics, Symptom Status, Functional Status, General Health Perception and Environmental Characteristics on QoL ................................................................................ 81 xi Determinants of Quality of Life of women Living with Cervical Cancer LIST OF ABBREVIATIONS AMA: Accra Metropolitan Assembly CHAG: Christian Health Associations of Ghana EORTC: European Organisation for Research and Treatment of Cancer FIGO: International Federation of Gynaecology and Obstetrics GDHS: Ghana Demographic Health Survey GHQ: General Health Questionnaire GHS: Ghana Health Services GSS: Ghana Statistical Services HIV/AIDS: Human Immune Virus and Acquired Immunodeficiency Syndrome HPV: Human Papilloma Virus HRQoL: Health-Related Quality of Life IFS-CC: Inventory Functional Status of Cervical Cancer IRB: Institutional Review Board KBTH: Korle-Bu Teaching Hospital MGCSP: Ministry of Gender, Children and Social Protection MOH: Ministry of Health NMIMR: Noguchi Memorial Institute for Medical Research QoL: Quality of life RAM: Roy Adaptation Model SD: Standard Deviations SI: Symptom Index SPSS: Statistical Package for Social Science USA: United States of America WHO: World Health Organisation xii Determinants of Quality of Life of women Living with Cervical Cancer CHAPTER ONE INTRODUCTION 1.1 Background of the Study Cancer is a disease that may put people to fear, panic, perceived or real social stigma and decreased the quality of life (QoL). It could be any form of abnormal growth or tumour caused by abnormal cells which affect any part of the body. There are many types of cancers which affect many parts of the body such as cervical, prostate, lung, the liver, and many more. Cervical cancer is an abnormal growth or tumour of the cervix predisposed by the Human Papilloma Virus (HPV) (Collins, Lowy, Hodes, Grady, Gibbon, Fauci et al., 2017). Cancer of the cervix is the commonest prevalent cancer among all the gynaecological cancers in the last 20 years (Bruni et al., 2015). Cervical cancer is the fourth most frequent cancer among women in the world with about 527,624 cases diagnosed and 265,672 mortalities annually (Bruni et al., 2017). Moreover, in low and middle-income countries, cervical cancer has become the main cause of death among women (Arbyn et al., 2011; Denny, 2012). Some of the predisposing factors of cervical cancer are exposure to early sexual intercourse with multiple partners and poor genital hygiene. These conditions which are quite prevalent in many low and middle-income countries provide a medium for Human Papilloma Virus (HPV) which is the main predisposing factor to cervical cancer (Kangmennaang, Thogarapalli, Mkandawire, & Luginaah, 2015). Thus, it partly explains the high prevalence of cervical cancer in such countries. According to Kangmennaang et al. (2015) cervical cancer affects women in their reproductive and productive lives. This has a huge implication for population growth and economic activities in addition to the suffering and disability it imposes on the 1 Determinants of Quality of Life of women Living with Cervical Cancer victims. Africa is one of the continents hard hit by the global upsurge of cancers. At least, 99,038 new cancer cases were recorded with 60,098 deaths in Africa in recent times (Bruni et al., 2017; Ferlay, Soerjomataram, Ervik et al., 2015). Cervical cancer alone accounts for 12% of all gynaecological cancer-related deaths in Africa (Bruni et al., 2015). This situation is not only alarming but reflects the real threat cervical cancer poses on women’s health in Africa, with consequences for many families and health systems sustainability. Cervical cancer been the leading cause of cancer death among women in West Africa, as well as Ghana (Bruni et al., 2015) while the incidence and mortality rates in Ghana has becomes the third most highest disease among the women in the globe (Opoku, Yarney, Vanderpuye, Koranteng, Kyei-Adesi, Antwi, & Donkor, 2016; WHO, 2015). The WHO predicts that by the year 2025, about 5,000 new cases of cervical cancer and 3,361 cervical cancer-related deaths will occur annually in Ghana (Opoku, Yarney, Vanderpuye, Koranteng et al., 2016;WHO, 2015). In Ghana, cervical cancer has already been one of the top ten types of cancers among women for years (Li, Chen, Chang, Chou, & Chen, 2015; Bruni et al., 2015). In Ghana, the crude incidence for cervical cancer is 24.3 per 100, 1000 as of 2017 with 3,052 new cases recorded annually and about 1,556 are mortalities due to cervical cancer (Bruni, Barrionuevo- Rosas, Albero, Serrano et al., 2017). 2 Determinants of Quality of Life of women Living with Cervical Cancer The rate at which cervical cancer increases in many countries is largely dependent on how effective the screening programs of the disease is done and time changes of the disease risk factors, notably the HPV (Vaccarella, Lortet-Tieulent, Plummer, Franceschi, & Bray, 2013). However, due to inadequate screening programs for rapid cancer diagnoses especially in the hinterlands, the reported statistics could be lower than the true cervical cancer burden in Ghana, since there is no accurate cervical cancer registry in Ghana (Bruni, Barrionuevo-Rosas, Albero, Serrano et al., 2017). Moreover, the population of Ghana is about 8.57 million women falling within the age of 15 years and more who are mostly at risk of getting affected with cervical cancer (Bruni et al., 2017; Ferlay et al., 2015). With a high occurrence rate of 900 per 100,000 population in West Africa (Torre et al., 2015), it means that Ghana potentially has 77,130 cases of active cervical cancer, many of whom remain undiagnosed. This should be on the agenda of policy makers and healthcare providers to seek appropriate ways of screening and treating cervical cancer patients. Again, this would not only improve the QoL of the individual patients but their families and communities at large (Ghana Statistics Service, 2014). However, quality of life of the women need to be given extra attention by all cadre of health professionals due to the increase numbers of these cervical cancer new cases in the globe as well as in Ghana (Li et al., 2015; Opoku et al., 2016). This usually happens after patients have undertaken cervical cancer treatment. Quality of life is described as a vital indicator to the assessment of patients’ responses to any form of cancer and its treatment protocol. Quality of life of the women has been conceptualised and the women had perceived that physically, psychologically, 3 Determinants of Quality of Life of women Living with Cervical Cancer socially, and spiritually, each individual were highly affected (Li, Chen, Chang, Chou, & Chen, 2015). The quality of life is also viewed by researchers as a dynamic and complex concept that has relevance to cancer patients’ care in nursing practice. Anecdotal evidence indicated that QoL is the standard of health, comfort and happiness experienced by an individual or group. Considering the multidimensional nature of QoL, most of the factors that determine and predict QoL among cancer patients are especially those who are presently suffering from cervical cancer. It is further argued that these factors may determine the duration of illness and treatment of cervical cancer that affects the women’s QoL physically, psychologically and socially or their life patterns as a whole (Machuki, 2015). Many cancers, coupled with their different treatments side effects increased physical symptoms and obviously increases in psychological distress which negatively affects the patient’s QoL. Health professionals always turn their attention on curative treatments of cervical cancer to maintain life and this may devalue the effects of complications of treatment on patient’s QoL (Li et al., 2015) . Furthermore, a multiplicity of physical complications of cervical cancer and its treatment was found to exist (Li et al., 2015) in cervical cancer patients (Massad et al., 2013). For instance, some patients suffer from urinary incontinence, painful sexual intercourse, bleeding, and vaginal sores. Moreover, cervical cancer patients often get chronic pain in the lower back and hips. This is attributed to late effects of radiotherapy which impairs their physical functioning (Vistad, Cvancarova, Kristensen, & Fosså, 2011). Another treatment that affects the women physically is cervix cryosurgery and chemotherapy, which has been observed to be the major 4 Determinants of Quality of Life of women Living with Cervical Cancer treatment types of cervical cancer worldwide (Pfaendler, Wenzel, Mechanic, & Penner, 2015). It appears that, there has been a continuous improvement in the outcome from surgery, radiotherapy and chemotherapy in terms of progress on the women’s coping abilities, yet treatment-related adverse effects, including urinary, gastrointestinal, sexual, and neurologic issues, can disrupt the women’s quality of life (Pfaendler et al., 2015). Again, much attention has not been given to women with cervical cancer’s quality of life as compared to that of breast cancer women which have been well researched (Li et al. 2015;Weaver et al. 2012). Women with cervical cancer have been noted to experience poor QoL than patients of other cancers (Li et al., 2015). Comparatively, in Uganda, it is reported that women with ovarian and endometrial cancers have better QoL than those with cervical and vulval cancers (Goker, Juvenal, Yanikkerem, Turhan, & Koyuncu, 2011). It is evident that even fifteen (15) years after diagnosis of cervical cancer, patients still show psychological symptoms like grieving, among others (Li et al., 2015; Le Borgne et al., 2013). However, the determining factors of QoL of women with cervical cancer are subjective but careful management of these factors is the ultimate goal of enhancing their quality of life. These factors are often described in terms of physical, social, psychological, functional status, emotional aspects and as well as general health status of the patient. Managing the complex mix of these factors tend to enhance the patients’ economic and social integration. It appears that numerous studies have demonstrated relationships among physical, social and psychological functioning of cervical cancer patients (Baffert et al., 2016; Hobbs et al., 2008; Li, Chen, Chang, Chou, & Chen, 2015; Xiang, 2015). 5 Determinants of Quality of Life of women Living with Cervical Cancer Moreover, these studies were conducted in high income countries with better organisational and health support systems. Thus, the determining factors of QoL for cervical cancer patients and the inter-relationships between these factors are considerably different in low and middle-income countries like Ghana. Therefore, there is a compelling need for further examination of the determinants of QoL of women who have been diagnosed with cervical cancer. Consequently, this study sought to address the gap using the Revised Wilson-Cleary Health Related QoL Model as an organising framework to determine the quality of life of women living with cervical cancer and the factors influencing their QoL. 1.2 Problem Statement Cervical Cancer is an abnormal growth or tumour of the cervix predisposed by HPV and other factors. Cervical cancer has been leading as the most cause of all cancer death among the women in the Republic of Ghana (Nartey, Hill, Amo-Antwi, Nyarko, Yarney, Cox, 2017; Wiredu & Armah, 2006; WHO, 2015). Also, the frequent increase of cervical cancer cases and deaths rates in African nation has been noted to be the most highest in the globe (WHO, 2015). As predicted by World Health Organization, that 5000 new cases of cervical cancer are likely to be recorded in the year 2025, with a possible death rate of 3,361 cervical cancers women will occur yearly in Ghana (WHO, 2015). Furthermore, about 3,052 new cervical cancer cases are diagnosed and 1,556 cervical cancer deaths occur annually in the Republic of Ghana (Bruni et al., 2017). Women with cervical cancer are affected psychologically, physically, socially, sexually, spiritually and in many forms after they are diagnosed of having the disease (Li et al., 2015). 6 Determinants of Quality of Life of women Living with Cervical Cancer However, coping with the spouses, partners, families, friends and continuous integration into the community in which the women live becomes a major task. The society has different perceptions and opinions about the women living with cervical cancer. This stigma, perceptions, and anxieties are originating from sexual dysfunction, bladder dysfunction such as urinary incontinence and bowel dysfunction like defecation which are associated with the disease process and its treatment (Donovan, Butler, Butt, Jones, & Hanney, 2014; Grover, DeLuca, Quirin, DeLuca, & Piestun, 2012; Pfaendler et al., 2015; Ros & Espuña, 2013). Apart from that, women with cervical cancer battle with their QoL psychologically in many forms. Some of these problems are depression, anxiety, schizophrenia, bipolar disorders and psychosocial issues of the individual (Pfaendler et al., 2015; Xiang, 2015). Moreover, treatment for women with cervical cancer such as radiotherapy, cryosurgery, and chemotherapy also play important roles in the QoL of these women. When diagnosed early, the treatment success is about 85% to 90% of stage I cervical cancer and this can hugely improve the patients’ QoL (Pfaendler et al., 2015). Unfortunately, patients with cervical cancer were found to have been shown poor QoL scores, not only when compared with others general cancers population, but also when compared with only gynaecological cancer women such as cervical cancer patients (Ferrandina et al., 2012).Therefore, the majority of studies in the western world on cervical cancer do focus on issues relating to patients' QoL and treatment options (Le Borgne et al., 2013). In Ghana, literature indicates that only few studies have examined cervical cancer screening for HPV (Opoku, Laryea, Spangenberg, Moyer, Kolbilla et al., 2016), incidence and mortalities rates (Nartey, et al., 2017), HPV screening practice, 7 Determinants of Quality of Life of women Living with Cervical Cancer knowledge of cervical cancer and its treatment effects, prognosis of treatment modalities such as chemotherapy, radiotherapy, and cryosurgery of gynaecological cancer patients (Williams & Amoateng, 2012; Binka, Doku, Awusabo-Asare, 2017). In fact, other studies in Ghana, determine the economic cost of the cervical cancer screening and treatment of the patients (Quentin et al., 2011). Statistics indicated that cervical cancer has been one of the top ten types of cancers among women for years and the crude incidence for cervical cancer is 24.3 per 100, 1000 as of May, 2017 of all new cases in Ghana (Bruni et al., 2017; Ferlay et al., 2015). Cervical cancer ranks as the first leading cause of female cancers and also the most common female cancer among women aged 15 to 44 years in Ghana (Nartey, et al., 2017; Bruni et al., 2017). The potential active cases could be as high as 77,130. Particularly, hospitals data from 2010 to 2013 was collected from the Komfo Anokye Teaching Hospital (KATH), Kumasi and Korle Bu Teaching Hospital (KBTH), Accra indicated that 24.5 per 100,000 females suffer from cervical cancer in the Greater Accra and Ashanti Region (Nartey, et al., 2017; Bruni et al. 2017; Ferlay et al., 2015). However, in Ghana, there is no cervical cancer registry or accurate data available about the incidence of the disease (Bruni et al., 2017). There appears to be few studies that have examined the quality of life of women living with cervical cancer in Ghana. It is against these alarming statistics that, it is important for the researcher to examine the QoL of women living with cervical cancer in the Greater Accra region. Thus, this study sought to examine the determinants of quality of life of women living with cervical cancer in the Accra Metropolis. 8 Determinants of Quality of Life of women Living with Cervical Cancer 1.3 Purpose of the Study The purpose of the study was to examine the determinants of quality of life among women living with cervical cancer in the Accra Metropolis. The specific objectives are to: 1. Describe the symptom status, functional status, general health perception and QoL of women living with cervical cancer in the Accra Metropolis. 2. Examine the relationship between symptom status, functional status, general health perception and quality of life of women living with cervical cancer in the Accra Metropolis. 3. Establish the influence of individual characteristics, symptom status, functional status, general health perception and environmental characteristics on QoL of women living with cervical cancer in the Accra Metropolis. 1.4. Research Questions 1. What are the symptom status, functional status, general health perception and QoL of women living with cervical cancer in the Accra Metropolis? 2. What is the relationship between symptom status, functional status, general health perception and quality of life of women living with cervical cancer in the Accra Metropolis? 3. What is the influence of individual characteristics, symptom status, functional status, general health perceptions and environmental characteristics on QoL of women living with cervical cancer in the Accra Metropolis? 9 Determinants of Quality of Life of women Living with Cervical Cancer 1.5 Significance of the Study The results of the research study will be relevant to the Ministry of Health and its agencies as well as the Ministry of Gender, Children and Social Protection as a guide for policy formulation or reviews regarding cervical cancer management and care because as a policy formulator, relevant information will be required on the issue which can directly affects the health of Ghanaian women. Results of this study will aid the stakeholders of the health services in Ghana, especially health practitioners to understand the factors that affect women living with cervical cancer so as to adopt appropriate strategies and measures to improve the QoL of the patients. Also, findings of this study will serve as a foundation of body of knowledge on cervical cancer in Ghana for emerging researchers and academicians and pave the way for further researches. Results of this study will aid Relief agencies and women support groups to support the women, thus improves QoL of women living with cervical cancer. The results of this study will inform Ministry of Health and the Nursing and Midwifery Council of Ghana to collaborate and established home-based nursing care and community nursing that will improve the QoL of women living with cervical cancer. Finally, the findings of this study could form a basis for a structured in-service training programme for all health care professionals to improve the care of women living with cervical cancer. 1.6 Operational Definitions of Terms Quality of life: It is an individual satisfaction of life in terms of physical functioning (for instance ability to execute daily activities), psychological activities (mental well- 10 Determinants of Quality of Life of women Living with Cervical Cancer being and emotional stress), social functioning (building relationships with people taking part in social events) and functional status. Determinants: These are factors influencing the QoL of women living with cervical cancer. Environmental characteristics in this study described the socioeconomic and the employment status of a participant. Individual characteristics referred to the demographic information of a participant (age, marital status and educational background). 11 Determinants of Quality of Life of women Living with Cervical Cancer CHAPTER TWO THEORETICAL FRAMEWORK AND LITERATURE REVIEW This chapter presents the theoretical framework that guides the study and also reviews related empirical literature on women living with cervical cancer and their quality of life (QoL). 2.1 The Revised Wilson-Cleary Conceptual Model of Health-Related Quality of Life Wilson Ira and Cleary Paul (1995) developed a conceptual model of health-related quality of life (HRQoL) that integrates each biological and psychological aspect of health outcomes. This model has four variables that determine the overall quality of life. These are biological/physiological factors, symptom status, functional status and general health perceptions. This HRQoL model was revised by Estwing Ferrans, Zerwic, Wilbur, & Larson (2005) and added two constructs such as individual and environmental characteristics. Characteristics of the individual and the environment also influence functional status, as well as the quality of life. This model has been wide applied to completely different populations, together with patients living with cancer, Parkinson’s illness, arthritis and HIV/AIDS (Ferrans, Zerwic, Wilbur, & Larson, 2005; Kring, 2008). The revised Wilson and Cleary model of health-related quality of life (Ferrans et al., 2005) is a model that has a strong theoretical concept about any quality of life research. Even though the HRQoL model is about health-related model, previous researchers have seen it to be more of a quality of life model than a health-related quality of life model (Kring, 2008). The cogent reason for this debate was explained by the individual and environment characteristics. (See Figure 2.1). Ferrans et al. (2005) further stated that 12 Determinants of Quality of Life of women Living with Cervical Cancer the overall QoL can be affected by the influence of intrapersonal, social, institution and community policy factors. The arrows linking individual and environmental characteristics are not showing the relationship of only the antecedents of quality of life but it is directly pointing to the overall quality of life (Kring, 2008). Thus, rather showing the influence on quality of life does not exclusively mediate by health-related determinants like biological function, symptoms, and functional status (Kring, 2008). These pathways of the model by the arrows is reversible which also explained reciprocal relationship and the fact that there is no arrow linking between all the levels do not indicate that relationship is not existing among the constructs (Ferrans, Zerwic, Wilbur, & Larson, 2005; Wilson & Cleary,1995). These links allow the individual characteristics to influence environmental characteristics that in turn may impact overall quality of life. The arrows showing the relationship is important because it represents the complete unrelated health determinants such as non- availability of entertainment, which may have an impact of psychological functioning of an individual features, that may affect the perception of a person total QoL (Kring, 2008). In this study, the revised version of Wilson and Cleary (1995) model for health- related quality of life (Ferrans, Zerwic, Wilbur, & Larson, 2005) was adopted to guide the understanding of the determinants of QoL of women living with cervical cancer because it provides the variables needed to be studied and as well as indicate their relationship with each other. The QoL variables under study are symptom status, functional status, general health perception, individual and environmental 13 Determinants of Quality of Life of women Living with Cervical Cancer characteristics. The study variables and their relationship are shown in figure 2.1 below. 14 Determinants of Quality of Life of women Living with Cervical Cancer * This aspect of the model will not be studied Figure 1: Revised Wilson and Cleary’s (1995) Model of Health-Related Quality of Life (Ferrans et al., 2005). 15 Determinants of Quality of Life of women Living with Cervical Cancer 2.1.1 Biological Functions of Health-Related Quality of Life Conceptual Model Physiological/Biological function are physiological processes that support and maintains life (Wilson & Cleary,1995). It is the fundamental factor that determine health status of a patient (Ferrans et al., 2005). Physiological activities are centred on the functions of human cells and organ systems that can always be accessed through the lab tests analysis of samples, conducted physical assessment and finally make medical diagnosis based on the test results. The biological function was not measured in this study because of ethical and logistical challenges. 2.1.2 Symptom Status of the Model Symptoms are "patient's perception of an abnormal physical, emotional, or cognitive state"(Wilson & Cleary, 1995, p.60-61). Though some symptoms always look like biological and physiological function, most of these symptom are however different. It is not all the time that biological changes showed symptoms but mostly symptoms have always been perceived when biological signs and causes are not even present. This characteristic of the symptoms, totally gives the uniqueness of an individual and this probably showed differences from a patient who is experiencing similar disease process. Thus, it is this reasons that the influence of symptom status of the patient on total quality of life is determined. 2.1.3 Functional Status of the Model Functional status is another important variable added to the Wilson and Cleary HRQoL model that examines the capability of an individual to undertake certain activities (Wilson & Cleary, 1995) and this is normally influenced by the symptoms of the illness. On the other hand, measuring functional status as a unique variable has a direct relationship with quality of life because it may not be partly correlated with symptoms of the women. 16 Determinants of Quality of Life of women Living with Cervical Cancer The functional dimensions which are used to determine quality of life are physical functioning, social activities, role and psychological functioning (Kring, 2008; Wilson & Cleary, 1995). Ferrans et al. (2005) used a traditional method to revise the model of Wilson-Cleary HRQoL focused on the individual inability to work efficiently in terms of their functional status , which may have an influence on their daily life as a cervical cancer patient. 2.1.4 General Health Perceptions of the Model General health perceptions was another crucial construct which was added to the model of HRQoL indicating all the health concepts binds as one as well as other factors that might not be part of this model of HRQoL (Wilson & Cleary, 1995). General health perceptions in this model are subjectively oriented and this permits a person to summarise all the previous concepts, putting more value on the relevance of every variable to have final total sum of an individual health. General health perception is basically subjective than being objective and is individualised (Ferrans et al., 2005). According to Ferrans and Powers (1985) total QoL of a patient can be determined by four dimensions such as health and functioning, socioeconomic and psychological/ spiritual, as well as family support. All these factors recorded a total variance of 91% when using the Quality of life Index scale to assess overall QoL of the patient (Ferrans et al., 2005). This QoL index tool can be used to investigate every aspect of the patient total quality of life (Kring, 2008). On the health and functioning dimension, the perceived individual quality of life concerning their health functioning has been influenced and this partly affected their total general health perceptions to be high. 17 Determinants of Quality of Life of women Living with Cervical Cancer The aforementioned concept explained that quality of life is always termed as “health- related quality of life” (Ferrans et al., 2005; Kring, 2008) by many health care professionals and researchers. Health perceptions of the patients are always measured using the cervical cancer general health perception questionnaire and quality of life cancer index version III, describes how poor or excellent the quality of life of those women living with cervical is. Furthermore, these variables in the concept influence the overall quality, which is more important because these patients would have to determine how satisfied or dissatisfied with the most aspect of quality of life that is actually crucial to the women (Kring, 2008;Ferrans et al., 2005). However, general health perceptions have been noted to be subjective and individualised by the women. The women’s opinions in determining quality of life were highly subjective about their illness. The subjectivity of health perception could be conceptualised as difficult and multidimensional. 2.1.5 Individual Characteristics of the Model Ferrans et al. (2005) indicated that the individual characteristics are grouped into demographic characteristics, developmental features, psychological and biological factors that always have the opportunity to influence an individual’s health outcome. Basic demographic characteristics which are linked to an individual general health are sex, age, educational level, marital status, and ethnicity. Normally these demographics are not modifiable, but give more information pertaining to who is to target for any health interventions. On the other hand, psychological factors are always modifiable and totally dynamic in nature, thus alternative health interventions are needed to be adopted for a specific health issue. Psychological factors include cognitive processes whereby an individual can change his/her perceptions at any time. Motivation, women faith with God or any belief system are the 18 Determinants of Quality of Life of women Living with Cervical Cancer major examples of psychological factors while a biological factor becomes hereditarily related with special features that could show as disease, therefore affecting biological activities. 2.1.6 Environmental Characteristics of the Model The environmental characteristics are either social or physical factors (Ferrans, Zerwic, Wilbur, & Larson, 2005). Social factors are the influence of relatives, friends, partners, spouse and socioeconomic factors such as employment. Social issues are the specific culture of women with cervical cancer and, the society perception towards the women, on their health behaviour. Physical factors are the unique attributes of settings that could influence the health outcome of the patients such as pollution of the environment and workplace amenities. The HRQoL model reflects all the unidirectional flow of constructs in the direction of total quality of life. Moreover, the arrows basically show the typicality of the fundamental pathways of the constructs in the model (Ferrans et al., 2005). It explains that any arrow pointing could have a reciprocal relationship with quality of life, indicating the complexity of the relations or associations among the various variables/constructs impacting on quality of life. 2.2 The Quality of Life Concept The quality of life (QoL) is a dynamic and difficult concept and it has medical relevance to cancer patients care in nursing practice since nursing is a people-centered profession and nurses usually work with teams (Hodgson & Scanlan, 2013: Azaare & Gross, 2011). Quality of life is a wider concept that integrates medical and non-medical aspects, involving physical functioning (for instance, ability to execute daily activities), psychological activities (mental well-being and emotional stress), social functioning 19 Determinants of Quality of Life of women Living with Cervical Cancer (building relationships with people taking part in social events), thus perceptions of all health status like pain, and total satisfaction with life (Wilson & Cleary, 1995; Marcelo & Marcelo, 2003). It has been noted that satisfaction of quality of life by an individual depends on their physical strength, psychological well-being in order to cope with uncertainties and person’s social and spiritual life that makes him/her as a holistic person. Another way by which QoL play a significant role is on the environment. Barnaś et al. (2012) dispute the assertion that design of any nature of physical environment has an effect on QoL especially the elderly. Burger (2003) agrees that the environment affects the quality of life and seeks individuals’ views personally before restoring urban ecosystems. According to the QoL group of WHO (1995), QoL is the individual's perceptions of their position in life in the perspective of various cultures, traditions, moral values system, in which people live and develop their working objectives; open to opportunities, maintaining standards and concerns about life. Quality of life of patients with cervical cancer applied physical well-being where their daily activities and disease signs and symptoms suggest how they are satisfied with life. Considering psychological well-being, the individual stress and anxiety level are accountable for their life satisfaction. While women living with cervical cancer, their social well-being are known best by their caregivers, family members, friends, and even in their work places where they need to establish relationship. Socially, their sexual functions with their partners are largely a determinant of their QoL. The quality of life is regarded as multi-dimensional on all facet of life (Efficace & Marrone, 2002: Cimete et al., 2003). The prominent features of QoL are multidimensional and full of subjectivity. The multidimensional part is the domains (physical, functional/role, motional/psychological and social well-being) while subjectivity of QoL denotes people’s 20 Determinants of Quality of Life of women Living with Cervical Cancer perspectives of their illness and treatment, expectations of self and estimation of risk or harm (Ferrans et al., 2005; Wilson & Cleary, 1995). Spiritual well-being and traditional/cultural practices can influence individuals’ perceptions of their QoL. Anecdotal evidence indicates that person’s /individual’s responsibilities are culturally and traditionally embedded in the patient’s QoL. This portrays how the individual is centrally attached to tradition rather than to believe in other religious values. According to Mandzuk and McMillan (2005), spiritual well-being is an instrument used in determining QoL. Efficace and Marrone, (2002) elucidate the dimensions of personality as the mind, body and spiritual issues and further discuss the impact of these scopes as the subjective facets of QoL. Moreover, QoL appears to be subjective in nature than viewing it objectively. Moreover, characteristics of objectivity play a lesser role in QoL deliberations. Objective features such as income, housing, employment, and education impact on QoL (Marshall, 1990). This was affirmed by Chan et al. (2015) who explain that staff nurses providing care to mental health patients on admission in some hospitals in China, largely face financial difficulties, lacking social relations and this ultimately affects their QoL. This can make life satisfaction difficult for these patients and the nurses themselves. However, anecdotal evidence showed that quality of life determinants like physical, emotional ability, intellectual property of the client, economic, social, self-perceived health status, and work-related factors affect the patient’s daily activities. Furthermore, the World Health Organization (1995) also recognised psychological health, beliefs system by individuals, physical health, social functioning to be significantly related with the environment as the main important QoL factors that need to be considered in any related work or research of quality of life. Quality of life as a multidimensional concept is assessed 21 Determinants of Quality of Life of women Living with Cervical Cancer subjectively from the perceptions of the influence of the disease as well as the treatment on the appraisee and the appraiser's expectations. 2.3 Overview of Cervical Cancer The lining of the cervix of women vagina is always the starting point of the cancer affecting specifically the cell lining of the cervix and the lower part of the womb (American Cancer Society, 2015). Squamous cell carcinoma begins in the thin, flat cells which are found in the lining of the cervix. Cervical cancer cells start as adenocarcinoma that produces mucus and other fluids (American Cancer Society, 2015). Mostly the transformation areas of the abnormal cells causing cervical cancer are believed to be linked with HPV (American Cancer Society, 2015). Some of the predisposing factors of cervical cancer are exposure to early sexual intercourse with multiple partners, using oral contraceptives pill for a long time and poor genital hygiene (Satija, 2015). These conditions which are quite prevalent in many low and middle-income countries provide a medium for HPV which is the main predisposing factor to cervical cancer (Satija, 2015). Thus, it partly explains the high prevalence of cervical cancer in such countries. A group of hundred and fifty different viruses of HPV are related where some of which cause some kind of growth known as papilloma while others are referred as warts (American Cancer Society, 2015). Human Papilloma Virus usually attack cells closed to the surface of the cervical skin, and those within the genitals, anus and other organs but not the blood or internal organs. This HPV is spread through sexual intercourse that is skin-to-skin contact: vaginal, anal, and even oral sex (American Cancer Society, 2015). The predisposing factors that cause cervical cancer are multiple sexual partners, poor vaginal hygiene, and exposure to human papilloma virus during sexual intercourse (Collins et al., 2017). 22 Determinants of Quality of Life of women Living with Cervical Cancer Moreover, multiple partners and sexual activities are the major predisposing factors women at the of 25 to 49 years of age face, while researchers indicated that they are considered the active age group susceptible to infection by the human papilloma virus resulting to infected cervix (Collins et al., 2017; Ferlay et al., 2015; WHO, 2013). Aside from that early age in marriage also showed an early risk to sexual intercourse and early pregnancy which are well recognisable causal factors for cancer of the cervix (Raychaudhuri & Mandal, 2012). Once the cervix is invaded with infection, it can either be aggravated into a cancerous lesion or presents offensive vaginal discharge. The earlier stage of the disease normally do not show any signs or symptoms but early detection of the disease is known through regular Pap smear test screening for HPV (Collins et al., 2017). Clinical manifestation of cervical cancer depends on the organ and site affected and the stage of the disease. The earliest stage (stage A1) of the disease is usually asymptomatic. However, the persistent signs and symptoms of cervical cancer include vaginal bleeding and pelvic pain, back pain, unusual vaginal discharge, and pain during sexual intercourse (Collins et al., 2017). Cervical cancer can be staged based on where the cancer is located for easy identification and treatment. These stages are indicated below by Collins et al. (2017) in tabular form. Table 2.1: Classification of Cervical Cancer Stage Descriptions 0 Cells that are abnormal at times become cancerous are present in the innermost layer of the cervix. I The cancer cells are limited within the cervix. II The cancer cells spread beyond the cervix to the upper part of the vagina excluding the pelvic wall and the lower third of the vagina. III Cancer cells spread to the lower third of the vagina and may invade the pelvic wall and the kidney as well. IV Cancer cells spread to the bladder, rectum and beyond the pelvic region to other parts of the body. 23 Determinants of Quality of Life of women Living with Cervical Cancer Depending on the stage of the disease, various staging of cervical cancer affect the women physically as vaginal bleeding, painful sexual act, emotionally stress, societal coping, and psychologically with negative perceptions, affect QoL negatively (Collins et al., 2017; Azmawati, Najibah, Hatta, & Norfazilah, 2014; Li et al., 2015; Oppong & Meyer-Weitz, 2017). Depending on the stage and its treatment protocol of cervical cancer, especially stage III and IV, patient treatment modalities of cervical cancer ranges from simple hysterectomy, radical hysterectomy, and radiation therapy or a combination of surgery, radiation and chemotherapy (Boardman & Huh, 2011; Pelkofski et al., 2016). The treatment modalities of cervical cancer are associated with side effects. The treatment effects on the women physically are cervix cryosurgery and chemotherapy, which has been observed to be the major treatment types of cervical cancer worldwide (Pfaendler et al., 2015). The effects of surgery are constipation, nausea, and vomiting. Furthermore, most women living with cervical cancer always experience incontinence or had difficulty in urinating. The negative effect felt by the women are always temporary. Leake, Gurrin, and Hammond, (2001) found these women are always on the treatment of various chemotherapy and radiation therapies were having serious adverse effects which affect their body image, sexual dysfunction, and fertility. These effects might have a major effect on patient’s overall quality of life. After a hysterectomy, the women will stop menstruating and will not be able to become pregnant (Collins et al., 2017). The acute effects of radiotherapy are abdominal cramps, diarrhoea, fatigue, rectal bleeding, nausea, vomiting, urinary frequency and dysuria, abdominal skin dryness as well the pelvis turns colourless, tender to touch the pain and mostly dry. Stenosis of the rectum and vagina, bowel obstruction, difficulty in absorptions and cysts are the latest side effects of radiotherapy (Boardman & Huh, 2011). 24 Determinants of Quality of Life of women Living with Cervical Cancer The chemotherapeutic agent administered to women with cervical cancer is Cisplatin, carboplatin and taxol. These drugs have side effects such as nausea, vomiting, loss of appetite, taste changes and kidney damage (American Cancer Society, 2015). The diagnosis, stage, signs and symptoms and the side effects from the treatment modalities of cervical cancer, negatively impact quality of life of the women. 2.4 Empirical Review of Related Literature The literature review involves discussions of various findings and studies that best explains the QoL of women with cervical cancer, describe the symptom status, functional status as well as general health perception of women living with cervical cancer. Studies that aided in explaining the relationship between patient symptom status, functional status, general health perceptions and QoL of the women and the factors that influence their overall QoL were reviewed. The reviews also concentrated on how the individual and environmental characteristics influence functional status of the women living with cervical cancer as well as the overall quality of life. Articles were retrieved from various database sources like Science Direct, Google Scholar, PubMed, SAGE, EBSCOhost, and CINAHL. The key words used to retrieve relevant literature were quality of life, cervical cancer, symptom status, functional status, general health perceptions, individual characteristics, environmental characteristics and measurement of QoL of women with cervical cancer. The literature is organised according to the constructs of the conceptual framework and the objectives of the study. 2.5 Quality of Life of Women Living with Cervical Cancer Cervical cancer is like any chronic disease that can have an impact on quality of life of the women. The stage of the disease and socioeconomic status of women diagnosed with cervical cancer are likely to influence their QoL (Goker et al., 2011; Kim & Kang, 2015). 25 Determinants of Quality of Life of women Living with Cervical Cancer Women living with cervical cancer’s quality of life have been extensively researched in the high and middle-income countries. These studies have proven that QoL of women living with cervical cancer differs ranging from good to moderate to poor or impaired. However, some of these researchers reported that the overall quality of life was poor or even impaired in women with cervical cancer, renal dialysis, hepatitis, depression, psychiatry disorders and chronic haemodialysis (Bjelic-Radisic et al., 2012; Goker et al., 2011; Kim & Kang, 2015; Kring, 2008; Thomas-Hawkins, 2005; Brunton et al., 2015;Weisbord et al., 2004). In contrary, Khalil et al. (2015); Torkzahrani, Rastegari, Khodakarami, and Akbarzadeh- Baghian (2013); Wenzel et al. (2005); Fernandes and Kimura, (2010) and Taneepanichskul et al. (2011) reported that quality of life of the women is good while Heydarnejad, Hassanpour, and Solati (2011) and Faller et al. (2017) reported from their studies that women living with the disease consider their QoL as moderate and low. However, women living with cervical cancer have been reported in study findings as having experienced a worse form of HQoL than patients diagnosed with other gynaecological cancers (Weaver et al., 2012). These differences in findings might emerge from the socio-cultural setting of these studies. Comparatively, Goker et al. (2011) conducted a study on Quality of Life of Women with Gynaecologic Cancer in Turkey and found that women with ovarian and endometrial cancers have good QoL than those with cervical and vulval cancers. Ovarian and endometrial cancers are the minor illness and this could have accounted for its QoL to be good than cervical cancer. However, considering treatment modalities mostly used to treat cervical cancer can have serious effect on patient QoL. These modalities are surgical interventions, radiotherapy management and chemotherapy. Davidson (2011) and Fernandes and Kimura, (2010) 26 Determinants of Quality of Life of women Living with Cervical Cancer gathered from their research findings that the variations of choice of treatment normally pose great impact in causing drug side effects negatively on the physical comfort of the patients, body image, sexual dysfunction and fertility, subsequently affects the overall QoL negatively. These potential side effects of the treatment modalities are likely going to affect patients QoL either poorly, moderately or even good. Davidson (2011) and Fernandes and Kimura (2010) further reported from his study on systematic reviews that, women who are on treatment for cervical cancer mostly have their quality of life affected since there are multiple toxicities recorded in a combination of therapies such as chemotherapy and radiation therapy. Again, as these therapies were received by the cervical cancer patients, importantly there was no negative effect on their QoL (Davidson, 2011). The problem of patient body mechanism being tolerable of HRQoL has to be looked at again when chosen chemotherapy type for women living with the illness. In terms of psychological and spiritual support of QoL, Faller et al. (2017) research study on “Unmet needs for information and psychosocial support in relation to quality of life and emotional distress: A comparison between gynaecological and breast cancer patients in Germany”, using quantitative approach found that about 40% of the women living with cervical cancer need urgent psychosocial support. Moreover, gynaecological cancer patients especially women living with cervical cancer reported lower levels of QoL and as well as higher emotional distress than that of the breast cancer patients (Faller et al., 2017; Brunton et al., 2015). Faller et al. (2017) and Brunton et al. (2015) further reported from their study that women living with cervical cancer can have lower emotional functioning due to higher levels of information needs, and lack of more frequent psychosocial support that leads to higher depressive symptoms of these women. These women under this situation will need 27 Determinants of Quality of Life of women Living with Cervical Cancer comprehensive treatment and rehabilitation for integration. Furthermore, previous studies conducted in China also found that young women living with cervical cancer always suffer more emotional distress and disruption of QoL moderately than any gynaecological cancer (Zhao et al., 2014; Le Borgne et al., 2013). Again, Le Borgne et al. (2013) on their cross sectional study in France using the instruments of QoL indicate that psychological symptoms such as emotional distress, mental fatigue and anxiety were impaired in women living with long-term cervical cancer than other gynaecological cancers. This portrays that women living with the disease have the potential of committing suicide when they get the opportunity. Le Borgne et al. (2013) and Brunton et al. (2015) further found that the women can be diagnosed of having cervical cancer and after being put on treatment for over 15 years still they harboured psychologically that they were indeed ill and always try to present psychological symptoms like grieving, disturbed peace of mind, dissatisfaction in life, among others. However, the psychological trauma witnessed by these women might lead them to severe depression. Similarly, Heinonen, Tapper, Leminen, Sintonen, and Roine (2013) conducted a study in Finland and found that women living with cervical cancer have higher anxiety emotions after six and 12 months of diagnosis and this suggested that the likelihood to feel anxious will result to negative effect in lowering HRQoL. Also Heinonen et al. (2013) used quantitative method with a sample size of 500 women in their study and found that psychological distress on women living with cervical cytology abnormalities necessitating colporoscopy was not associated with impaired Health Related Quality of Life (HRQoL) in general, but it was in relations to the anxiety level of the patient about the illness and the psychosocial trauma aspect of the HRQoL of the patients. The study further reported that more information about cervical cancer treatment is needed for the patients to allay their 28 Determinants of Quality of Life of women Living with Cervical Cancer anxiety and panic attacks that could affect their HRQoL (Heinonen et al., 2013). It may be disputed that majority of QoL studies mostly centred on purely quality of life of an individual or the society. According to Zhao et al. (2014) who conducted a study on quality of life of patients living with cervical cancer lesions in China found that an overall QoL is good for women living with early-stage of cervical cancer. Zhao et al. (2014) and Heinonen et al. (2013) further found that treatment received by the cervical cancer women improves their QoL moderately. The findings also indicated that the women with precursor lesion's QoL continuous to be good but declines in their QoL immediately after treatment increases to moderate afterwards in cervical cancer patients (Zhao et al., 2014). This fluctuation of QoL among the women could be an initial anxiety and emotional panic felt by the women immediately after medical diagnosis. Other researchers reported that patients who are treated with radiotherapy have a stronger negative effect on sexual activity such as painful sexual intercourse and vaginal narrowing than patients treated without radiation (Bjelic-Radisic et al., 2012; Chan et al., 2015). Also, the reported findings of the study further found patients suffering from emotional feelings, diarrhoea, nausea, and vomiting are those treated with radiation therapy as compared to the patients treated without radiation (Bjelic-Radisic et al., 2012; Mirabeau-Beale & Viswanathan, 2014; Osann et al., 2014). Nausea and vomiting, diarrhoea was described by patients themselves as symptoms occurring during and after brachytherapy (Bjelic-Radisic et al., 2012; Mirabeau-Beale &Viswanathan, 2014). Satwe, Salunkhe, and Satave (2014) found that there was reduction of QoL scores from good to poor in areas of physical functioning, physiological and psychosocial functioning of the quality of life of women living with cervical cancer. This study was done on QoL of 29 Determinants of Quality of Life of women Living with Cervical Cancer Women with Radiation Therapy in Maharashtra, India. Concerning the general nature of QoL, there is anecdotal evidence that women living with cervical cancer in the African continent suffer different and varied quality of life ranging from good to moderate and very poor. Xie et al. (2013) assessed the women living with cervical cancer’s quality of life at different clinical stages in China and found that the general quality of life of women with precancerous lesions and early cervical carcinoma were moderately better than patients with advanced cervical cancer. This suggested that cervical cancer patients are more likely to record poor or low/moderate quality of life during the period of receiving treatment with the disease they present. This report was from a clinical trial study on a total of 220 patients with cervical cancer at various clinical stages admitted to West China Women's and Children's Hospital within the period of May, 2010 and January, 2011 (Liu, Wang, Zhou, & Li, 2014). Previous studies also reported that the illness becomes severe when the emotional functioning of the women are impaired which may result in the increase of staging of cervical cancer that can contribute to the poorer emotional functioning of these women (Bradley, Rose, Lutgendorf, Costanzo, & Anderson, 2006). Furthermore, Osann et al. (2014) conducted a study using multivariate regression analysis and found that depression, anxiety, gynaecologic problems such as cervical cancer and sleep disturbances, affect cervical cancer patients QoL negatively. Again, it was also found that after a cervical cancer diagnosis, it lowers the level of adaptive coping of the women as well as the social support from the family and friends were independently associated with lower QoL (Osann et al., 2014; Osann et al., 2014). 30 Determinants of Quality of Life of women Living with Cervical Cancer On health and functioning of QoL, Torkzahrani et al. (2013) found that physical functioning is the performance status of an individual and the ability of the women to undertake their daily activities. For instance motivation, doing any activity, stamina and coordination improve their health status. One may argue that health and functioning cannot be the only dimension in the determination of patient QoL as found by Torkzahrani and other, thus factors such as spiritual, emotional and psychological factors can be the hallmark of determination of QoL. However, on social support, researchers in China found that family members provide more care and support to women living with cervical cancer than friends (Li, Chen, Chang, Chou, & Chen, 2015; Liu, Wang, Zhou, & Li, 2014) while previous study reported that friends are the most caring tools for these women as the family members and couples rather neglect and desert them for fear of stigma associated with the family (Li et al., 2015). In contrary, You and Lu (2014) indicated that Chinese women living with cervical cancer rather receives family support by their families better than that of their friends, spouse or partners as well as the cancer organisation (Li et al., 2015; You & Lu, 2014). On the other hand, Li et al. (2015) and Liu et al. (2014) recommended that all professionals in the health industry providing care should always deal directly with the patients' families as a unit unlike others will just deal with the patient an individual. This is vital in caring for Chinese patients with cervical cancer. For that matter, quality of life studies involving persons with cervical cancer are conceptually weak and the concept is difficult, multidimensional and dynamic, its constructs interpretation and synthesising research findings is also difficult. This has calls for the determinations of women living cervical cancer’s quality of life as a construct of study. 31 Determinants of Quality of Life of women Living with Cervical Cancer However, previous literature reported that the usage of “health-related quality of life” is confused with similar scales in determine the effective measure of the holistic quality of life of the women (Ferrans et al., 2005; Kring, 2008). Though the overall quality of life of these patients were known to be good, moderate and poor/ impaired. The outcomes of Ferrans and Powers’ Quality of life (QoL) Cervical Cancer Index version 3.0 tool can be used to determine the patient QoL holistically. Moreover, the revised health-related quality of life model of the Wilson- Cleary (Wilson & Cleary,1995; Ferrans et al., 2005) has stated four determinants used in assessing the quality of life of the women. These factors are biological factors, symptom status, functional status and general health perceptions together influence the total quality of life of the women. 2.6 Symptom Status of Women Living with Cervical Cancer and QoL According to the Wilson-Cleary model of HRQoL (Ferrans et al., 2005), quality of life comprises physical and emotional problem as well as symptoms which affect the women’s total quality of life. Kim et al. (2015) conducted a quantitative study on “retrospective review of symptoms and palliative care interventions in women with cervical cancer” and found that 96% of the women suffered pain, 77% of them had emotional distress, 50% of the women had constipation while 72% reported having vaginal bleeding, and another 72% of the cervical cancer of women complaint of having decreased appetite (anorexia). The study further reported that about 70% of the women were having poor feeling of their well- being and also had suffered from severe fatigue (69%), whilst only 54% of them experienced insomnia always (Kim et al., 2015). Kim et al. (2015) were of the view that the most common symptom regarded as a chief complaint of these patients was pain. This possibly can affect their quality of life sexually and physically. Furthermore, other authors reported that the women’s symptom status was 32 Determinants of Quality of Life of women Living with Cervical Cancer high and diarrhoeal symptoms were related to pelvic radiation cancer treatment (Zeng, Cheng, Liu & Feuerstein, 2016). Moreover, it was reported that a near average number (49%) of cervical cancer women surveyed in California, USA had sexual dissatisfaction as well as general pain by these women (Chan et al., 2015). The mean score of sexual health QoL score of these women were 15.4 +/− 3.4. This obviously indicated sexual dissatisfaction among the couples. Again, other problems affecting the women include financial constraints, cost of treatment and it adverse effects, lack of spousal/partner support, lack of family, depression, anxiety and divorce (Chan et al., 2015; Heinonen et al., 2013; Heydarnejad et al., 2011 & Li et al., 2015). These emotional and economic factors grilling these women raises some rhetoric questions about the QoL of the women. It was also found by National Cancer Institute researchers that the top reported symptoms of women living with cervical cancer were vaginal bleeding, pelvic pain, back pain, fatigue, unusual vaginal discharges, vomiting, nausea and pain during sexual intercourse (Collins et al., 2017). Other symptoms may occur due to the treatment modalities concerning the cervical cancer illness such as constipation, abdominal cramps, anorexia, sleep disturbance, anxiety and depression (Collins et al., 2017). It is observed that these wide ranges of symptoms have been reported elsewhere and the women were experiencing at least some of these symptoms on a timely basis and this arguably can affect the women health negatively. Aside that, in terms of treatment side effects, a United Kingdom study reported that severe fatigue has been prominently high in patients who are receiving weekly Cisplatin treatment compared with the usually repeated delivery of treatment (Davidson, 2011; Sekse, Hufthammer, & Vika, 2015). These high side effects probably is from the weekly regimen of chemotherapy that has the tendency of causing high anaemia rate among the women (Davidson, 2011; Sekse, Hufthammer, & Vika, 2015; Steen, Dahl, Hess, & Kiserud, 2017). 33 Determinants of Quality of Life of women Living with Cervical Cancer These symptoms were obvious that women living with cervical cancer would experience them after completing the treatment. Furthermore, previous studies in Norway revealed that the cause of fatigue resulting from cancer was reported and about 53% of the women were basically gynaecological cancers cases. Aside that cervical cancer women alone record high percentage of fatigue than other cancer patients (Sekse et al., 2015), while another study from China also reported that chronic fatigue of the women affect their productivity negatively (Zeng, 2016). This indicated that these women were filling severe pain and stress in order to survive productively. Subsequently, it was reported in China by previous authors that participants reported a mean of reduction in work productivity of 16%, although these women reported good QoL compared with European Organization for Research and Treatment of Cancer (EORTC) reference values (Zeng, 2016). Moreover, in order to predict QoL, by using work productivity loss indicators such as depression, job stress, employment status, disease stage, anxiety symptoms, cognitive limitations, and physical functioning levels, it was found that all indicators of productivity of the women living with cervical cancer were statistically significant predictors of global QoL among these Chinese women (Zeng, 2016). This indicated that as productivity is reduced or lost, quality of life of these women is affected negatively and vice versa. However, Satwe et al. (2014) found that changes in the quality of life of women living with cervical cancer occurred due to treatment modalities such as pelvic surgery, chemotherapy, and radiation therapy. These treatments exposed them to nausea, vomiting, diarrhoea, constipation, weight loss and hormonal changes. Meanwhile, literature reported that psychological symptoms are the major factors that affect patient’s QoL because it is evident that, even 15 years after diagnosis of cervical cancer, women with cancer still show 34 Determinants of Quality of Life of women Living with Cervical Cancer psychological symptoms like grieving, depression, anxiety, and fear among others which affect their quality of life (Le Borgne et al., 2013). Notwithstanding, these psychological symptoms occur due to cervical cancer erroneous beliefs about the onset of cancer by the women, change in self-image and self-esteem, marital tensions, fears and worries (Fernandes & Kimura, 2010). However, Torkzahrani, Rastegari, Khodakarami, and Akbarzadeh-Baghian, (2013) and Ferrandina et al. (2012) also reported that the chronic nature of the disease (cervical cancer) can affect the QoL of these patients and the families through functional disorders. For instance the surgery could involve the female vaginal mucosa and epithelium; and chemotherapy could induce nausea, vomiting, diarrhoea, constipation, weight and hormonal changes. All these were found to be obvious signs shown among the women (Ferrandina et al. 2012; Torkzahrani et al., 2013). Ferrandina et al. (2012); Hobbs et al. (2008); Kim and Kang, (2015); Stafford et al. (2016) and Xiang (2015) found that psychological symptoms are negative perception harboured from the onset of the illness and these women have difficulty in concentrating in life, feeling worried and sad about the illness, trouble falling asleep affects the patients’ QoL negatively. On the other hand, Chan et al. (2015); Li et al. (2015); Liu et al. (2014) in China and Taiwan found that divorce, separation and family disunity with the women and the spouse were common due to the women sexual life and vaginal problems associated while Zhi-Mei Zhao, et al. (2014) also reported that cervical precursor lesions were effects from the treatment. These cancer treatments are surgery, chemotherapy and radiotherapy which were the best of choice. These treatments further negatively have an impact on body image, self-esteem, relationships with partners, sexual and reproductive functions, which add up to the overall decrease of QoL found by Bloom et al. (2007); Chan et al. (2015); Liu 35 Determinants of Quality of Life of women Living with Cervical Cancer et al. (2014). Thus, it is important to understand the changes in the QoL of patients during and after treatment and explore the factors that affect their QoL. Azmawati, Najibah, Hatta, and Norfazilah (2014) also found that under the staging system of cervical cancer, stage I tumour is basically limited to the cervix, as opposed to stage II to IV which extends beyond the cervix ultimately affect QoL of these women (Azmawati, Najibah, Hatta, & Norfazilah, 2014). In the whole world, the 2006 FIGO report indicated that 42% of cervical cancer cases are diagnosed at stage I, 30% at stage II, 21% at stage III and 6% at stage IV (Azmawati, Najibah, Hatta, & Norfazilah, 2014; Quinn et al., 2006). The stage of cancer plays an important role in the quality of life of women with cervical cancer (Azmawati et al., 2014). Besides that some studies (Ferrandina et al., 2012; Mantegna et al., 2013) also reported that QoL and sexual activity differ in symptoms during the early stage and late-stage of cervical cancer (Azmawati et al., 2014) and this most of the times result in anxiety, depression, reduced sexual activity, divorce and separation, or infidelity. Again, the determining physical factors of QoL of women living with cervical cancer can be subjective but careful management of these factors is the ultimate goal of enhancing quality of life. 2.7 Functional Status of Women Living with Cervical Cancer and QoL Functional status is mostly referred to as the ability to undertake certain tasks daily (Wilson & Cleary, 1995). These functions may be physical, social, psychological or role-related activities (Ferrans et al., 2005). Thomas-Hawkins (2005) considered that functional status is the “ability to perform and the actual performance of daily activities” (p.687). Thomas- Hawkins-further discovered that functional activities were activities for everyday living, namely dressing, eating as well as personal hygiene and other contributory performance of daily living, like going to do shopping, providing for housekeeping and ensuring adequate 36 Determinants of Quality of Life of women Living with Cervical Cancer transportation. Overcash (2015) found that individual patients were capable of doing their activities, and what they intend to do. In Turkey, women living with cervical cancer were reported to have high and very good functional status especially in their cognitive scores (Goker, Guvenal, Yanikkerem, Turhan, & Koyuncu, 2011). Leidy (1994) reported that functional ability (utmost ability to perform a specific duty), functional performance (daily activities), functional ability in the operation of an individual daily activities (functional workload percentage for a day), and functional reserve are the hallmark of determination of these women total function. It has been argued that Leidy's findings could not answer the totality of these women functional status but may suggest the way forward in assessing their functional status. On functional capacity, Kring (2008) and Leidy (1994) reported that it is an activity of a person by requiring physical movement to a point where one is completely exhausted while functional activities, which determines daily or routine activities is the suitable assessment tool for persons with cervical cancer. It is however found that physical functioning is often limited in women with cervical cancer normally as a result of symptoms or treatment regimen and not actually in the disease itself perse (Kring, 2008). Furthermore, previous studies pointed out that bathing and dressing were the common activity may be hard especially if a bathroom is not equipped with handles, raised toilet seats, and other technological devices that could have aid in minimising the risk of falling and home injuries because of the slippery nature of the floor (Overcash, 2015; Cesari et al., 2013). Other authors reported that most of the activities related to functional status include bathing, dressing, feeding, transferring, toileting, continence, housekeeping, applying communication devices like telephones, cooking, transportation, and managing money (Overcash, 2015). 37 Determinants of Quality of Life of women Living with Cervical Cancer It appears that functional status can be modified and the individual will still maintain their independent function to be higher in their quality of life. Physical activities are crucial dimensions within the quality of life, and it appears that majority of quality of life researches are involved with women with cervical cancer but mostly they are not determining functional status as a needed variable but rather consider it as a different variable of quality of life. Previous studies reported that psychological functions are in different forms as others found it as incorrect beliefs about the illness (Fernandes & Kimura, 2010; Li et al., 2015), other authors reported psychological functions different changes in the persons self-image, low self-esteem, marital tensions, fears and worries that might affect women’s QoL (Torkzahrani et al., 2013). However, social factors contributing to the functional status of the women with cervical cancer have been indicated as "the general availability of friends and family members that provide psychological and material resources" as reported by Kleiman and Riskind (2013, p.43). Kleiman and Riskind (2013) further found that social support is multidimensional which comprised the following emotional support, appraisal support as an affirmation, feedback and social comparison, informational support and instrumental support like aid in kind, money, labour, time and modifying the environment (Li et al., 2015). Social functioning of the women has been an issue of controversy among various authors. Previous studies reported in China, found that family members provide more care and support to these women than friends in one study (You & Lu, 2014; Li et al., 2015). The same author in another study in Beijing, Capital of China revealed that, friends are the most caring tools for these women as the family members rather neglect and deserted them for fear of stigma and embarrassment associated with the family (Li et al., 2015). As Hobbs, et 38 Determinants of Quality of Life of women Living with Cervical Cancer al. (2008) also reported in New South Wales that these women had few friends and were estranged from their families, thus trusted no-one as a family member. In the contrary, a recent study conducted on women living with cervical cancer in China, indicated that majority of these patients perceived that family members provide support socially to these women than that of friends and significant others (You & Lu, 2014; Liu, Wang, Zhou, & Li, 2014). This controversy of these findings might be due to methodological and cultural differences even though both studies were conducted in China; the socio-cultural settings at which these studies were conducted specifically in China differ. Moreover, most Chinese patients probably thought of it that having cervical cancer as a disease is a curse or misfortune one in life. Existing literature showed that the Chinese are rather concerned about their personal and family affair, and they expect to have emotional support from their close family members, friends and significant others for their daily survival (Li et al., 2015; Pfaendler et al., 2015; Xie et al., 2013; Zhao et al., 2014). This is vital in caring for Chinese patients and any individual with cervical cancer outside China. Again, it appears that social support facilitates coping abilities, improves active coping strategies that support the patients individually to adjust to everyday life changes. This may positively improve cervical cancer patients QoL. Interestingly enough there seem to be few or no studies on how the quality of life of women living with cervical cancer is affected socially in Ghana. 2.8 General Health Perception of Women Living with Cervical Cancer and QoL General health perception indicates the overall health concepts combined, in addition to any variable not specifically captured in the model (Wilson & Cleary,1995). Anecdotal evidence indicated that general health perception is totally subjective in nature, an individual’s own way of understanding of health that determines her overall satisfaction 39 Determinants of Quality of Life of women Living with Cervical Cancer with life. It was reported in Turkey that women living with cervical cancer have the lowest general health perceptions score for QoL (Goker et al., 2011; Davidson, 2011; Oppong & Meyer-Weitz, 2017) while other authors in Manchester, UK and Ghana reported that emotional functioning was one of the general health perceptions that deteriorates as well as increases incidence of stress, anxiety and depression (Davidson, 2011; Oppong & Meyer- Weitz, 2017). These emotional perceptions becomes higher among the women and this result to suicidal ideation (Davidson, 2011; Osann et al., 2014). Opoku et al. (2016) conducted a study on Health Behaviours in Cervical Cancer Survivors and Associations with Quality of Life in California, USA and found that women who perceived positive about their health behaviours during the 4-month follow-up care witnessed a greater improvement in QoL than those who made no changes or adopted worse behaviours. Kring (2008) reported that general health status of patient’s only aids in the explanations of determinants of quality of life since other tools/instruments were not able to cover all the constructs because "quality of life" is so difficult and multidimensional. For instance, SF-36 always adds in a question that measures general health perception during most studies on health-related quality of life. However, it appears that majority of the studies examining the quality of life of the women living with cervical cancer never used general health perceptions as a variable for statistical analysis but rather generalised it with other variables in order to draw conclusions. It has been observed that researchers frequently overlooked this variable (general health perceptions) and excludes general health perceptions as a different variable in quality of life researches among women with cervical cancer. However, considering psychological/emotional part of the general health perception, Li et al. (2015) reported in Taiwan that the women have different views and opinions about their 40 Determinants of Quality of Life of women Living with Cervical Cancer health as some are perceived negatively, others thought their ill health is normal since their daily activities are not affected by the illness. Previous authors also showed that psychological functions are the hallmark of general health perception of the women (Fernandes & Kimura, 2010; Torkzahrani et al., 2013).Thus these women have negative perception and wrong beliefs about their illness. This perceptions has also affected their self-image, low their self-esteem, causes marital tensions, fears and worries as well as affect their total quality of life (Fernandes & Kimura, 2010; Torkzahrani et al., 2013). For instance, anxiety is a psychological factor that affects QoL of women with cervical cancer negatively. Even most of the women always harbour suicidal ideas as previous studies suggest that about 26.4% of the respondents attempted suicide while 26% of the participants reported to have had suicidal ideations in Ghana (Oppong & Meyer-Weitz, 2017). Heinonen, Tapper, Leminen, Sintonen, and Roine (2013) in their study found that most of the cervical cancer patients have high levels of symptoms such anxiety and this lowers their quality of life while it has been observed that women who are being diagnosed with HPV even when the Pap smear test is normal, it has a greater impact psychologically on their Health-Related Quality of Life (HRQoL) than an abnormal Pap smear result. Heinonen et al. (2013) further reported that more information about cervical cancer treatment is needed for the patients to allay their anxiety and panic that could affect their HRQoL. Also, Heinonen et al. (2013) findings revealed that psychological distress on women with cervical cytology abnormalities necessitating Colporoscopy not associated with impaired Health- Related Quality of Life (HRQoL) in general, but it was associated rather with anxiety and impaired psychosocial components of HRQoL of the patients. Examining the anxiety level, previous authors concluded that it dominated all the effects of the women by which one 41 Determinants of Quality of Life of women Living with Cervical Cancer undergoes through in psychological life especially when diagnosed of having had cervical cancer disease (Heinonen et al., 2013; Hobb et al., 2008; Kim & Kang, 2015). Unfortunately, the symptoms associated with depression was reported as similar to most of the symptom prevalent in the cancer population like fatigue, sleeping difficulties, and decreased appetite (Sekse, Hufthammer, & Vika, 2015). On the other hand, it has been observed that decreased of quality of life of the patients occurs due to the presence of depression and as well as some patients risk losing their lives. However, Brunton et al. (2015) study showed that depression appears to be a predictor of reduced health-related quality of life during treatment for the women. As Brunton et al. (2015) reported that the psychological burden of women with cervical cancer might be to blame, thus it was obvious that it reduces the quality of life of those women. This psychological symptoms phenomenon is the fundamental bedrock of changing an individual life quality of comprehensive and integrative treatment and management are not well established, patient quality of life might continue to deteriorate negatively and this causes their general health perception rate to be high. 2.9 Individual Characteristics of Women Living with Cervical Cancer and QoL The revised Wilson-Cleary HRQoL Model has defined individual characteristics as demographic characteristics, developmental factors, psychological and physiological determinants could influence any health outcomes of each person (Ferrans et al., 2005). For the purpose of this current study, the individual characteristics were determined by three main constructs: (a) the women age, (b) marital status reported by the participant and (c) educational level of the participant. These identified demographic characteristics of the individual may influence the quality of life of these women. 42 Determinants of Quality of Life of women Living with Cervical Cancer Raychaudhuri and Mandal (2012) reported that the prevalence rate of cervical cancer was high among youth especially those in the early ages of marriage group ranged from 25 to 49 years recording 82% and those who were in their early age with their first sexual intercourse was ranged from 15-18 years (65.5%) of the young women which were saddened. Also, Raychaudhuri and Mandal (2012) further reported that early age marriage was one of the risk factors that result to early sexual activities and this may lead to early pregnancy. These are all notable predisposing factors for cancer of cervix among the youth (Raychaudhuri & Mandal, 2012). Therefore age is an influencing characteristic in determining the women’s quality of life. According to Fotra, Gupta, and Gupta (2014), and Ushadevi, Arul, and Ashok (2012) age and religion have an influence on QoL of the women with cervical cancer. Moreover, the relationship of age to that of females with regards to the development of cervical cancer has been found to be positive as indicated in a study by Ushadevi, Arul, and Ashok, (2012). Though this illness can affect all age’s group, it is more prevalent on the older adult ageing between 40-49 years which is considered as the higher peak age for the incidence of this disease with the varying populations across the globe (Dhaneshor et al., 2017). On the contrary view, Muthoni (2016) reported in her study about “Socio-Demographic Characteristics that Influence Uptake of Screening for Cervical Cancer in Women Aged 18- 49 Years in Imenti North Sub-county, Meru County, Kenya” that the most prevalent age group affected by this illness rather ranged between 26-33 years (38.2%) followed by the young women with 18-25 years of age recording 37.7%. On education, Fotra et al. (2014) conducted a study on Socio-demographic “Risk Factors for Cervical Cancer Women in Jammu Region of Jand State of India First Ever Report from Jammu, India” found that educational status of the women was seriously considered 43 Determinants of Quality of Life of women Living with Cervical Cancer in which the larger proportion (40.7%, n=347) of the females had undergone primary education only while 13.1% (n=112) had attained and completed higher school and finally 33.2% (n=283) of the women forming the second largest population in their study sample were not schooling. However, it has been observed that marital status is determined when there is a fulfilment of human being relationship by partners. This relationship could be present or absent that one may need to rely on for any support for their daily living activities. Raychaudhuri and Mandal (2012) conducted a different study on “Socio- demographic and Behavioural Risk Factors for Cervical Cancer and Knowledge, Attitude and Practice in Rural and Urban Areas of North Bengal, India” and reported that about 88.7% of the women were happily married and leaving with their couples while only 0.5% of the women were divorced. Similarly, Fotra et al. (2014) and Muthoni (2016) also found that majority of the cervical cancer women were married (58.2, n= 496) while about 10.9% (n=93) of the women in India were also divorced. This explained that there were good health systems put in place to educate the women and the community about the disease, thus these health systems guide the public and perceptions of the spouse about a perceived stigma for positive integration. Previous studies indicated that most of the women (37%) were between the ages of 51-60 while a substantial number of the young married women (58.2%) were within the age of 21-25 (46.4%) and most of the women were primary (40.7%) and high school leavers (26%) of their educational ladder in Jammu region in India while in Kenyan most of them fall within primary (40.8%) and secondary school (30.1%) educational level (Muthoni, 2016; Fotra et al., 2014). Considering the emotional functioning of a partner and the practical side of being in a long- term partnership that would promote either negative or positive implication in determining 44 Determinants of Quality of Life of women Living with Cervical Cancer one's quality of life, one needs to honour the partner in a more responsive manner. Quality of life studies concerning women living with cervical cancer has mixed results with regards to marital status. Studies on cervical cancer have shown a positive correlation between cervical cancer and marriage life of both partners (Varghese, 2004). Raychaudhuri and Mandal (2012) also reported that most of the youth marry early and this exposes them to high infection that affects the cervix because early sexual intercourse is one of the fundamental risks of cervical cancer. This affects the quality of life of the women negatively. 2.10 Environmental Characteristics of Women Living with Cervical Cancer and QoL Environmental characteristics are made up of social relations and physical environment that can influence a person perception on quality of life (Ferrans et al., 2005). For the purpose of this current study, the environmental characteristics are determined by two representative variables: (a) socioeconomic status (self-reported poverty status) and (b) employment/occupational status of the women living with cervical cancers. Ferrans et al. (2005) found that environmental characteristics play a major role on all the previous circumstances of a quality of life and these features of the surroundings are relevant in any quality of life research in the world (Ferrans et al., 2005). Socioeconomic status of the women is the fundamental factor of the environment that influences the women’s quality of life. Findings from Parrish and Mason (2013) studies in the USA showed that low socioeconomic status of an individual's reported poor access to health care and that they are more than three times as likely as the higher socioeconomic status population to have no health insurance in attending to a health facility for their care. Previous studies have reported that women living with cervical cancer always suffer from high poverty and they has been battling with financial difficulty to pay for their 45 Determinants of Quality of Life of women Living with Cervical Cancer medications, adequate housing, transportation, and food, even their husband divorced them and this negatively determine their quality of life (Chan et al., 2015b; Li et al., 2015b; Osann et al., 2014; Parrish & Mason, 2013; Tanturovski, Zafirova, & NeliBasheska, 2013). Furthermore, existing literature found that socioeconomic status was negatively correlated with quality of assessing health care (Parrish & Mason, 2013). Also they further found that, the individuals with higher level of education were not able to even meet their financial obligations because an annual household income earned is less than twenty-five thousand dollars ($25,000) which are low and they are likely to face difficulties accessing and paying for quality healthcare services in the USA (Parrish & Mason, 2013). Regardless of income, individuals with a high school education or low education level may have limited health literacy and they are likely to experience challenges navigating through the health care system (Parrish & Mason, 2013). It appears that incidence of specific cancers varies by socioeconomic status individually. Parrish and Mason (2013) reported that cervical cancer patients generally have low socioeconomic status, thus are likely to have low financial support to care for their treatment, though their treatment modalities appear expensive. Furthermore, it appears that women with low financial status do not report to the hospital early for early assessment and treatment but would rather report to the health facility at the later stage for diagnosis, thus affect their quality of life negatively. 2.11 Summary of Literature Review The literature review showed that most of the studies on quality of life of women with cervical cancer were conducted in high income countries using survivors of cervical cancer. The quality of life (QoL) is a dynamic and complex concept and also a wider concept that integrates medical and non-medical aspects, involving physical functioning, psychological 46 Determinants of Quality of Life of women Living with Cervical Cancer activities, social functioning and thus perception of all health status like pain and total satisfaction with life (Marcelo & Marcelo, 2003).The revised Wilson and Cleary (1995) health-related quality of life model was used to guide the study (Ferrans et al., 2005). From the model, reported symptoms of women with cervical cancer are vaginal bleeding and pelvic pain, fatigue, unusual vaginal discharge, vomiting, nausea, pain during sexual intercourse (Collins, Douglas, Lowy et al., 2017) and other symptoms may occur due to the treatment modalities of the disease such as constipation, abdominal cramps, anorexia, sleep disturbance, anxiety, and depression among others. Psychological symptoms occur due to cervical cancer wrong beliefs by the people or the society perception about cancer, perceptions of change in self-image and self-esteem, marital fears, general fears, depression, anxiety and worries (Fernandes & Kimura, 2010). Functional status on the other hand may be considered as the capacity to undertake positive responsibilities (Wilson & Cleary,1995). These functions could be physical responsibilities, social , psychological disturbances and any activities (Ferrans et al., 2005). Thomas- Hawkins, (2005) considered functional status to be "ability to perform and the actual performance of daily activities". This definition covers both performance of daily living activities like clothing themselves, eating and undertaking personal hygiene and contributory activities of daily living like going to do shopping at the market, provides housekeeping daily, and supporting of transportation issues. This may positively improve cervical cancer patients QoL. General health perception, on the other hand, indicates the overall health concepts combined, in addition to any variable not specifically captured (Wilson & Cleary,1995). However, the individual characteristics according to the model is also called demographic characteristics, developmental factors, psychological and biological factors are constructs 47 Determinants of Quality of Life of women Living with Cervical Cancer that influence health outcomes of every individual (Wilson & Cleary,1995; Ferrans et al., 2005). In this current study, the individual/ demographic characteristics were determined by three main variables: (a) participant age, (b) educational level and (c) marital status of the participants. Also, the environment is made up of both social relations as well as physical environment that can influence a person’s perception of quality of life (Ferrans et al., 2005). In this current study, the environmental characteristics were determined by two representative variables: (a) socioeconomic status (self-reported poverty status) and (b) employment/occupational status of the participant. Based on the literature review, quality of life of women living with cervical cancer may be good, moderate and poor/impaired. Finally, it appears that studies on QoL of Ghanaian women living with cervical cancer have not been extensively investigated. It is against this reason that it is important for the researcher to examine the QoL and its determining factors among women living with cervical cancer in Ghana. 48 Determinants of Quality of Life of women Living with Cervical Cancer CHAPTER THREE RESEARCH METHODOLOGY This chapter describes the research design and the techniques involved as well as investigate the reason why this study is being conducted. The study setting of this research was also described. The chapter also covers the target population, sample size, sampling technique, research instruments, ethical issues, validity and reliability of the research measuring tools, data collection procedures and data analysis techniques. 3.1 Design of the Study The study used a quantitative approach with cross-sectional design to determine the QoL of women living with cervical cancer in the Accra Metropolis. This enabled the researcher to examine a cross section of women in the population using the selected sample to measure the quality of life of the women and other relationship that exists between the variables under study. Polit and Beck (2013) described this design as a strategy for one point data collection to depict a snapshot view of a phenomenon. The researcher used this survey design in order to obtain insight into the phenomenon. Again, this design was chosen for the study because this design is good in producing large amount of patient responses from the wide range of participants. Aside that, descriptive cross sectional design provides a meaningful presentation of any event and seeks to explain people’s views as well as their behaviour on the basis of collecting data at a point in time. Since, there is the need to investigate further about QoL of women living with cervical cancer in Ghana; this design was useful in examining the problem. 49 Determinants of Quality of Life of women Living with Cervical Cancer 3.2 Research Setting The study was conducted at Korle-Bu Teaching Hospital (KBTH), Greater Accra Regional Hospital at Ridge and 37 Military Hospital in Accra. These hospitals are the leading referral hospitals in Accra especially KBTH which is the premier national referral hospital in Ghana. Korle-Bu Teaching Hospital has several specialised units including the Nuclear Medicine and Radiotherapy Unit, where participants were identified and recruited for this study. The Nuclear Medicine and Radiotherapy Unit of the hospital records approximately 320 cervical cancer cases annually, with an average weekly case load of 21 clients. The unit has staff such as medical doctors, oncologist, radiation therapist, medical physicist, nurses, technicians and other support staff that managed the units. About 85% of the participants were recruited from KBTH, Accra because it is the main referral centre in Ghana (KBTH Annual report, 2016). The 37 Military Hospital is also cited in the central part of the Accra Metropolis which receives about 10 new patients annually (37 Military Hospital Annual report, 2016). The hospital receives patients from other health facilities and various specialised clinics. Patients were recruited from their gynaecological and obstetric unit where they receive every gynaecological case including cervical cancer patients. About 5% of the participants were identified and recruited. On the other hand Accra Regional Hospital, Ridge also sighted in the central part of the Accra Metropolis, and records at least 20 new cases yearly (Ridge Hospital Annual report, 2016). The hospital has a diagnostic and treatment unit for cervical cancer patients and receives referral cases for Pap smear examinations and screening. However, the patients are managed and later referred to KBTH for further 50 Determinants of Quality of Life of women Living with Cervical Cancer treatment. Only 10% of the participants were identified and recruited from the unit (KBTH Annual report, 2016). These hospitals are located in the centre of Greater Accra Metropolis which is not only the capital city of Ghana but also the biggest, most densely populated city and is the second largest industrial hub in Ghana. The Accra Metropolis which is divided into 11 Sub- Metropolis has an estimated land area of 173 square kilometres and a total population of 1,658,937 which grows at 3.1 % annually (Ghana Statistical Service, 2014). The population of Accra is expected to go beyond 4 million by the end of the year 2020. The northern and western part of the Metropolis is made up of the Ga East with a district capital Abokobi, Ga West holding Amasaman as the district capital and Ga South District is capitalised by Weija (Accra Metropolitan Assembly Annual Report, 2014). On the southern border of the Metropolis is the Gulf of Guinea from Gbegbes3 to La. It shares a boundary with the Ledzokuku-Krowor Assembly on the eastern part of Accra (AMA, 2014). The Accra city has witnessed numerous economic transitions and changes since the 1970s. Industrial census conducted showed that, Accra alone had 32% of Ghana manufacturing industries cited in the Metropolitan area (Yankson, Kofie & Moller-Jensen, 2006). In addition to that, the key financial institutions, Government ministries, multinational organisations including the major healthcare facilities all located in Accra. According to GSS (2014), economic activities in Accra in terms of employment is such that 26% of the workforce is in the service sector, 24% was also in the wholesale or the retail trade aspect of the economy, 19% of the workforce was also in the manufacturing sector while only 3% only went into agricultural sector of the economy. 51 Determinants of Quality of Life of women Living with Cervical Cancer 3.3 Target Population The target population were Ghanaian women living with cervical cancer who attend the Nuclear Medicine and Radiotherapy unit of KBTH, and the gynaecological units of 37 Military hospital and Ridge hospital for treatment and care. 3.4 Inclusion Criteria The inclusion criteria covered women aged 18 and above who have been diagnosed with cervical cancer and receiving treatment and care from Korle Bu Teaching Hospital, 37 Military hospitals and Ridge Regional Hospital for a period of at least three months. 3.5 Exclusion Criteria Women living with cervical cancer but not yet on treatment or are experiencing major complications, or been terminally ill were excluded from the study. Also, women who were diagnosed and receiving treatment for severe mental illness were excluded from the study. These exclusions were principally due to ethical constraints. Those who were diagnosed with an early stage of the illness (less than three months) were exempted because it is believed that these patients have not lived long with the illness and may have limited experience about their quality of life. Enough information could not have been acquired from these women with regard to the problem of interest in this study. 3.6 Sample Size Determination The accessible population of women living with cervical cancer is estimated to be 350 only for the 2016 year. This is based on the available data from the three hospitals. All the women living with cervical cancer and receiving treatment from the three hospitals were targeted as participants of the study. However, to achieve a confidence interval of 95%, an alpha level of 0.05 was set and the researcher used Yamane’s (1967) sampling formula to compute the minimum sampling size for the study as follows: 52 Determinants of Quality of Life of women Living with Cervical Cancer 𝑵 𝒏 = 𝟏 + 𝑵(𝒆)𝟐 Where: n = required sample size N= Accessible population e = alpha level (0.05) 350 𝑛 = 1 + 350 (0.05)2 350 𝑛 = 1 + 350 × 0.0025 350 𝑛 = 1 + 0.875 350 𝑛 = 1.875 n= 186.66 Thus, n≈ 187 The sample size for this study was 187 but 15% of the women were added to cater for non- response and bias. This brought the total sample size to 215. Thus, the researcher targeted at least 215 participants as the required sample for the study. In each of the hospitals, consecutive sampling technique was used to recruit the participants who met the inclusion criteria and consented to participate in the study. According to Polit and Beck (2013), quantitative researchers should select the largest sample possible so that it is representative of the target population to make it possible for generalisation of findings. Out of the 215 participants who were recruited for the study, 176 participants completed and returned usable questionnaire representing a response rate of about 82% which is considered adequate for cross-sectional surveys of this nature (Utts and Hekard, 2004). 53 Determinants of Quality of Life of women Living with Cervical Cancer 3.7 Sampling Technique The researcher purposively selected the Korle-Bu Teaching Hospital (KBTH), Greater Accra Regional Hospital, Ridge and the 37 Military Hospital because these are the health facilities providing cervical cancer treatment and care within the Accra metropolis. In each of the three hospitals, a proportional quota was given based on the number of cervical cancer cases seen on a weekly and annual basis. In each health facility, a consecutive sampling strategy was used to recruit the women who met the inclusion criteria and consented to participate in the study. Consecutive sampling is a sampling technique in which every individuals meeting the criteria of inclusion and agreed to participate is selected until the required sample size is achieved (Bowers et al., 2015). .This sampling technique was chosen because the study adopted stringent selection criteria against a reason of limited accessible population of interest. Consecutive sampling enabled the researcher to recruit participants in the order in which they arrived at the setting for data collection and consented until the sample size was reached (Bowers et al., 2015). The Nurse Managers of the Nuclear Medicine and Radiotherapy unit and Obstetric and Gynaecological units of these three hospitals served as gatekeepers and assisted the researcher and his trained assistants in identifying prospective qualified participants for the study. Each prospective participant was contacted individually and those who consented were recruited. 3.8 Research Instruments The variables in this study were measured by using various Likert scales questionnaires. The standardised tools adopted and slightly modified to suit the methodology and objectives of the study. The study questionnaire was divided into six sections (See Appendix A). Section A collected demographic information of individual participant. 54 Determinants of Quality of Life of women Living with Cervical Cancer Section B assessed the environmental characteristics of the women whereas; section C measured the symptoms status of the women living with cervical cancer. Section D also measured the functional status of the women living with cervical cancer and section E measured the general health perception of the women living with cervical cancer. Section F focused on measuring the dependent variable, quality of life of the women living with cervical cancer. The scales used in measuring all the model constructs chosen for the study are described below. 3.8.1 Demographic Variables The researcher designed items to assess the demographic and environmental characteristics of the women living with cervical cancer in the Accra Metropolis. These included the women’s age, marital status and educational background, employment status and the socioeconomic status of the women living with the disease. The design of these demographic and environmental characteristics questionnaires were guided by the theory of Revised Wilson-Cleary Health-Related Quality of Life to suit the study (Ferrans et al., 2005). 3.8.2 Quality of Life Index- Cervical Cancer Version III (Ferrans & Powers, 1984) The Quality of Life Index- Cervical Cancer Version III (QoLI-CC) is a subjective, self- report measure comprised of 32 pairs of questions (Ferrans & Powers, 1984). Thirty-two items make up the core version of the quality of life index (QoLI) and it assesses health and functioning, social and economic aspect of the patient, family support as well as psychological and spiritual quality of life of the patient. The question of QoLI-CC assesses life changes due to cervical cancer and the likelihood of undergoing surgery or chemotherapy. Each item asked how satisfied you are with your life by individualised base and rate the response according to the scale. That is a 6-point Likert-type scale with 1 being 55 Determinants of Quality of Life of women Living with Cervical Cancer very dissatisfied and 6 being very satisfied. These satisfaction scores were computed and weighted as per the scores to determine the total quality of life. Higher scores indicated higher overall quality of life. Reliability of the QoL Index has been well established. The instrument has a Cronbach’s alpha of 0.90 for cervical cancer patients (Ferrans & Powers, 1985). Test-retest statistics were 0.81 after one month for cancer patients (Ferrans & Powers, 1985). About 48 different studies used this tool amongst different population group across the world with Cronbach's alpha ranging from 0.73 - 0.99, and 0.88 - 0.93 for persons with cervical cancer (Ferrans, 2006). The way the instruments were structured, it follows and relates the direction of the researcher’s operational own meaning of quality of life which indicated that it is an individual satisfaction of life in terms of physical functioning (for instance ability to execute daily activities), psychological activities (mental well-being and emotional stress), social functioning (building relationships with people taking part in social events) and functional status. The QoL scale has four main subscale such as health and functioning, social and economic, family support and psychological and spiritual scale permitting various statistical analyses concerning the effect of individual as well as any double factor about the subscales of quality of life. However, in the current study, the tools were slightly modified into 30 items with a measure of patient satisfaction on a 6-point Likert-type scale with 1 = very dissatisfied and 6 = very satisfied. Higher mean scores indicate a higher quality of life and lower scores also indicate poor/impaired quality of life. A mean score below 3 indicates poor quality of life, mean score of between 3- 4 represents moderate quality of life and mean score of 5-6 also represent high quality of life. These ranges guided the interpretations and conclusions drawn in this study. The modifications were done after the pre-test results indicated that the 56 Determinants of Quality of Life of women Living with Cervical Cancer patients were having difficulty in understanding the original questionnaire when answering. The present study used the original satisfaction aspect of the questionnaire (How satisfied are you with that area of your life) for simplicity and understanding by the participants. The reliability test for quality of life index for the scale then yielded a Cronbach’s alpha of 0.93. 3.8.3 Symptom Index (Weisbord et al., 2004) The Symptom Index (SI) is a well develop instrument and it has 30 items which measures physical and emotional symptoms experienced by the women with cervical cancer and the severity/ frequency of those symptoms (Weisbord et al., 2004). This symptom index has been used widely by many researchers in different studies of conditions that have assessed symptoms experienced by patients with cancers (Drayer, et al., 2006), patients on renal dialysis (Kring, 2008;Cleary & Drennan, 2005; Curtin, et al., 2002) around the globe. Also, the symptom scale has been used generally which embed in the larger scale of SF-36 (Thomas-Hawkins, 2000; Weisbord et al., 2003) to investigate other diseases such as cancers, renal dialysis, diabetes, and HIV/AIDS symptoms (Curtin, Bultman, et al., 2002; Jablonski, 2007; Merkus et al., 1999). The participants were asked of symptom experienced and the extent it bothered them for the past week and to rate themselves on a five-point scale; 1 = not at all, a little bit=2, somewhat=3, quite a bit= 4 and 5 = very much. The responses concerning the symptom severity status were computed together for the total symptom severity. The instruments were tested for reliability and have been applied worldwide after it was developed. The total score for the kappa statistic of the entire tool was 0.48, (SD = 0.22). This is due to the temporary symptoms. However, following data collection in this current study, the original scale were re-coded into dichotomous variables of “Not at all” and “Yes” as a way of estimating the prevalence 57 Determinants of Quality of Life of women Living with Cervical Cancer rate of various symptoms status amongst the women. The original 5-point scale was used to ascertain the severity of the symptoms status among the women in this current study. The questionnaire has 27 items after slightly modification yielding a Cronbach's alpha of 0.88. 3.8.4 Inventory of Functional Status- Cervical cancer (Thomas-Hawkins, 2005) The Inventory of Functional Status-cervical cancer (IFS-CC) was developed and tested on persons with conditions such as renal dialysis, cervical cancer (Thomas-Hawkins, 2005). It is derived from the Roy Adaptation Model (RAM) and has 17 activities based on Roy personal care activities, household activities, and social/community activities. This was clearly aligned with primary, secondary and tertiary activities of RAM. The tool is designed basically to measure exactly what one can really do for himself or herself but not what one will be able to do at a given time (Kring, 2008). The patient should be able to rate themselves according to how they are satisfied with their life especially for a typical week in the previous months on a four-point scale: 1 = did not do, 2 = did with a lot of help, 3 = did with some help, 4 =did by myself. Alpha reliability for the total scale score was 0.88 (Thomas-Hawkins, 2005). Coefficients of 0.70 and above are considered adequate indicators of internal consistency (Polit & Beck, 2008). However, points were given for each activity and averaged to determine an overall functional status score, ranging from 1.00 to 4.00. Higher mean score indicate a higher level of functioning. Below 2 mean scores represent low functioning, between 2 to 3 mean scores indicate moderate functioning and above 3 mean scores represent good functional status. This is applied in the current study which has 15 items being adapted yielding a Cronbach’s alpha of 0.89. 58 Determinants of Quality of Life of women Living with Cervical Cancer 3.8.5 General Health Perceptions Questionnaire – 28 (GHQ-28) (Goldberg, 1978; Sterling, 2011) The GHQ-28 was developed by Goldberg in 1978 (Goldberg, 1978) and has since been translated into 38 languages. The GHQ-28 has 28-items which measure emotional distress in medical settings. The tool has four main subscales such as somatic symptoms, social dysfunction, anxiety and severe depression (Sterling, 2011; Goldberg, 1978). The scale permits individuals to synthesise all the objectives and subjective experiences concerning their personal health (Wilson & Cleary, 1995). Numerous studies have investigated reliability and validity of the GHQ-28 in various clinical populations. Some of these studies reported with good Alpha of 0.78 to 0 0.95 (Sterling, 2011; Robinson & Price, 1982), and Cronbach's alpha of 0.9–0.95 (Sterling, 2011; Failde & Ramos, 2000). However, each item is accompanied by four possible responses in the Likert scale: Not at all =1, No more than usual=2, Rather more than usual=3 and Much more than usual=4. These scores range from 1 to 4 for each response with a total possible score ranging from 1 to 4 and allow for means and distributions to be calculated. Below 2 means scores is low general health perceptions, between 2 to 3 mean scores represent moderate, and above 3 mean scores indicate high general health perception. These ranges guided the interpretations and conclusions drawn in this study. The current study adapted 24 items which yielded a Cronbach's alpha of 0.89. 3.9 Reliability and Validity of the instrument Standard questionnaires with acceptable reliability coefficients were adopted and slightly modified to suit the methodology and objectives of this study. To enhance validity, the adoption of the questionnaire was guided by the objectives of the study and extensive literature review. The questionnaire was also subjected to vetting and corrections by 59 Determinants of Quality of Life of women Living with Cervical Cancer research supervisors. To enhance validity, the questionnaires were pre-tested at Regional Hospital, Koforidua in the Eastern Region on 20 women living with cervical cancer. The data from the pre-test were analysed and any ambiguities in the questionnaire were corrected. The Cronbach's alpha coefficients of all the scales adapted were re-calculated to determine the current level of internal consistency of all the measuring scale. A reliability of 0.7 or higher is considered acceptable in social science research (Institute for Digital Research & Education, 2016). The pre-test yielded a Cronbach’s alpha of 0.83 for symptom status, 0.85 for functional status, 0.87 for general health perception, and 0. 91 Cronbanch’s for quality of life index respectively. However the main study reported an improved Cronbach's alpha for the symptom status as 0.88 with 27 items in the symptom scale, Inventory functional status scale also recorded a Cronbach's alpha of 0.89 with 15 items measuring the daily activities of the women. On the general health perception (GHQ 24) scale, a Cronbach's alpha of 0.89 with 24 items was recorded in this study by the researcher. Finally, quality of life index also recorded 0.93 Cronbach's alpha coefficients with 30 items measuring the overall quality of life of women living with cervical cancer. 3.10 Data Collection Procedure Following the selection of the facilities for the study, the nurse executives and directors of these hospitals were contacted for preliminary discussion and consent. The researcher obtained ethical approvals from both the Institutional Review Board (IRB) of the Noguchi Memorial Institute for Medical Research (NMIMR) of the University of Ghana (See Appendix B) and Korle Bu Teaching Hospital Ethics committee in Accra (See Appendix C) before commencement of the study. An introductory letter from the University of Ghana 60 Determinants of Quality of Life of women Living with Cervical Cancer School of Nursing and Midwifery (See Appendix D), in addition to the clearance letter, was sent to the departmental heads and management of the respective units to seek permission for the start of data collection for the study. The researcher recruited and trained two (2) female research assistants with at least first- degree qualification to help in the data collection process. The training was focused on the concept of the questionnaire, how (based on inclusion and exclusion criteria) to select participants, relevance of telling the participants about the purpose of the study, assuring participants about maintaining privacy, anonymity and confidentiality of patient information or data gathered, filling of consent form, how to administer the questionnaire and how to assist participants in filling the questionnaire when necessary. The researcher and his trained assistants were introduced to the authorities of the three hospitals to gain access to the setting for recruitment of prospective participants. The two trained research assistants paid weekly visits during clinic days at the Obstetric and Gynaecological and Nuclear Medicine and Radiotherapy departments of the three hospitals for a period of four months (January – April 2017) to collect the data. This was to ensure easy access to the prospective participants as and when they attend hospital for their care. The researcher and his assistants were assisted by the nurses and midwives to identify prospective participants who met the criteria. Each prospective participant was approached individually in which the nature and purpose of the study as well as confidentiality and right of withdrawal was explained. Women who met the inclusion criteria and agreed to participate in the study were given a voluntary consent form (See Appendix E) to sign or thumb print, then followed by the questionnaire to answer and return it as soon as it was completed. 61 Determinants of Quality of Life of women Living with Cervical Cancer 3.11 Data Management and Analysis The unit of analysis in this study was individual (participant). Analysis of the data was carried out using statistical package for social science (SPSS) Version 20.0 software. Following data entry, initial frequency analysis was conducted to examine the extent of missing data. Double checking, and manual cleaning of data was done to ensure data accuracy. Specifically, descriptive statistics including frequencies, means and standard deviations were used to summarise the data whilst parametric analysis including Pearson Product Moment Correlation (Pearson’s r) were used to determine the relationships between symptom status, functional status, general health perception and quality of life of women living with cervical cancer while Multiple Linear Regression was used specifically to determine the predictors of QoL of women living with cervical cancer for conclusions. Finally, statistical significance was set at a criterion level of 0.05 and the 95% confidence interval determined. The data collected was fairly symmetrical and normally distributed. Both dependent and independent variables were measured on an interval scale, thus, the basic assumptions for parametric analysis were met by the data. 3.12 Ethical Consideration The study was subjected to ethical scrutiny and approval by the Noguchi Memorial Institute for Medical Research, University of Ghana, Legon. Additional ethical clearance was obtained from Korle-Bu Teaching Hospital, Institutional Review committee where the majority of the women were recruited. Introductory letters were obtained from the University of Ghana School of Nursing and Midwifery to seek permission from the management of the respective hospitals in order to recruit participants living with cervical cancer. Informed and written consent was obtained from the participants before they were 62 Determinants of Quality of Life of women Living with Cervical Cancer recruited into the study. Furthermore, each of the participants was informed about the nature and purpose of the study, the benefits and possible risks of the study to them. They were made to understand that it is a voluntary participation and they have the freedom to withdraw from the study any time. Those who participated were given consent form to read and complete the form. This was to ensure that every participant makes an informed decision before taking part in the study. However, participants who could not read in English language were briefed in Twi language by the researcher’s trained assistants to understand all the information before their participation. At the end, those who could read and write signed while those who could not, thumb printed the consent form. The confidentiality of every participant response was protected by the researcher by ensuring that names and titles of the participants were not included in the questionnaire (anonymity). As Babbie (2005) highlights, it is important to ensure anonymity and provide protection to the participants against any physical or psychological harm. Again, to ensure privacy, arrangements were made to meet patients in their comfortable zones for data collection. The researcher and his assistants were careful to avoid interference during the data collection. Also, to maintain the confidentiality of information, the entire questionnaire was coded, administered and collected immediately after the participants responded. These questionnaire were securely locked up in a cabinet at the department of maternal and child health, School of Nursing and Midwifery, University of Ghana. These documents were only assessed by the researcher and supervisors. All information collected from the participants will be destroyed in five (5) years after the study. All storage materials like pen drive can only be assessed by the researcher, supervisors and the School of Nursing and Midwifery, University of Ghana. The drives shall be stored and secured in the cabinet of the department. 63 Determinants of Quality of Life of women Living with Cervical Cancer CHAPTER FOUR FINDINGS This chapter presents the results according to the objectives of the study. Demographic characteristics of the participants are presented first and followed by the rest of the findings. 4.1 Demographic Characteristics of Participants The majority of the women were aged between 40-49 years (47.2%, n=83). Approximately 42% (n=74) of the women were divorced while only 27.3% (n=48) were married. Most of the women (32.4%, n=57) were secondary school leavers. Details of the demographic characteristics are reported in table 4.1 below. Table 4.1: Demographic Characteristics of the Participants Variables Frequency (n) Percent (%) Below 30 years 10 5.7 31-39 years 32 18.2 Age 40-49 years 83 47.2 Above 50 years 51 29.0 Total 176 100.0 Married 48 27.3 Single 42 23.9 Marital status Divorced 74 42.0 Widow 9 5.1 Missing Data 3 1.7 Total 176 100.0 Illiterate 16 9.1 Middle school level 19 10.8 Basic school level 52 29.5 Educational Secondary school background 57 32.4 level Tertiary level 32 18.2 Total 176 100.0 4.2 Environmental Characteristics of Women Living with Cervical Cancer Concerning employment status of the women, the majority (47.2%, n=83) of the women were not employed while 25.6% (n=45) were fully employed with good jobs. The majority 64 Determinants of Quality of Life of women Living with Cervical Cancer of the women were financially insufficient and had no loan facility (47.7%, n=84) to support their treatment cost. For the method of paying for their cost of treatment, some (38.1%, n=67) of the women battled to pay for their treatment. Only 8.5% (n=15) of the women living with cervical cancer had some support from their husbands. Furthermore, almost all of the women were financially constrained (98.9%, n=174) due to their health and treatment modalities. About 30.7% (n=54) of the women were earning below Five Hundred Ghana Cedi (GH¢ 500). Details of the environmental characteristics of the women are presented in Table 4.2 below. Table 4.2: Environmental Characteristics of Women Living With Cervical Cancer Variables Frequency (n) Percent (%) Unemployed 83 47.2 Employment Full-time employment 45 25.6 status Part time job 11 6.3 Retirement 10 5.7 Others 26 14.8 Missing Data 1 0.6 Total 176 100.0 Financial Sufficient with remittance 25 14.2 status Sufficient with savings 17 9.7 Insufficient with no loan 84 47.7 Others 7 4.0 Missing Data 1 0.6 Total 176 100.0 Mode of Self 67 38.1 payment of Family members 37 21.0 treatment Husband 5 2.8 cost Loan 1 0.6 Health insurance 2 1.1 Self and family members 37 21.0 Self, family and husband 12 6.8 Self and husband 15 8.5 Total 176 100.0 Financial constraints Yes 174 98.9 No 2 1.1 Total 176 100.0 Net Monthly Income 1-500 54 30.7 501-1000 30 17.0 1001-1500 11 6.3 1501-2000 6 3.4 Missing Data 75 42.6 Total 176 100.0 65 Determinants of Quality of Life of women Living with Cervical Cancer 4.3 Quality of Life of Women Living with Cervical Cancer One fundamental objective of the study was to describe the QoL of the women living with cervical cancer. Quality of life of the women was measured in four-dimensional subscales (functioning and health, social and economic, family support and psychological and spiritual dimension). Generally, the findings indicated that the total mean score for quality of life of the women was moderate (Mean= 3.54, SD=0.70). Thus, there was moderate quality of life among the women living with cervical cancer in the Accra Metropolis. Considering QoL based on the four main domains (Health and Functioning, Social and Economic, Family Support and Psychological and Spiritual), the findings showed that the mean score for each domain was also moderate; health and functioning QoL (Mean=3.54, SD=0.75), social and economic health (Mean=3.35, SD=0.79), family support (Mean=3.54, SD=0.89) and psychological and spiritual QoL (Mean=3.75, SD=0.82). The QoL of women living with cervical cancer ranged low (mean =1.88) to high (Mean= 5.75). However, the overall mean score for QoL was moderate (Mean=3.54, SD=0.70). Details of QoL of the women are presented in Table 4.3 below. Table 4.3: Quality of Life of Women Living With Cervical Cancer Variables N Minimum Maximum Mean S D Health and Functioning of QoL 174 1.50 5.50 3.54 0.74 Social and Economic Measures of QoL 175 1.33 5.67 3.35 0.79 Family Support of QoL 176 1.17 6.00 3.54 0.88 Psychological and Spiritual Measures of QoL 176 1.83 5.83 3.75 0.82 Total Quality of Life Index 173 1.88 5.75 3.54 0.70 *Higher mean score reflects higher QoL of the women on a 6-point scale 4.4: Symptoms Status of Women Living with Cervical Cancer and QoL The total symptom status of the women was examined and the results showed on a 5-point scale that the total mean score for the overall symptom severity was 3.21(SD=0. 61). However, the prevalence of individual various cervical cancer symptoms were very high 66 Determinants of Quality of Life of women Living with Cervical Cancer amongst the women after the original 5-point scale was re-coded into dichotomous variables. Assessing for individual symptoms, about 64.8% (n=114) of the women were suffering from constipation, 84.1% (n=148) of them were feeling nauseated, and 76.1% (n=134) of the women presented vomiting as a symptom. Furthermore, diarrhoea alone accounted for 86.4% (n=152), while the majority of the women had decreased appetite (92.6%, n=163) for meals. Also, about 86.4% (n=152) of the women showed symptoms of vaginal bleeding while 96.6% (n=170) of them suffered pelvic pain and chronic back pain (97.2%, n=171). These women complained bitterly about this characteristic pain experienced. Apart from that, about 89.8% (n=158) of the women had a manifestation of dizziness, while vaginal discharge was reported by 87.5% (n=154). The women also experienced difficulty in putting their legs still (86.4%, n=152) due to knee joint pains. Notwithstanding, the results indicated that about 72.2% (n=127) of the women presented a manifestation of vaginal odour, while only 27.8% (n=49) indicated that they did not have any vaginal odour as a symptom of cervical cancer. Fatigue has been one of the most frequent symptoms experienced by the women, which was reported by 97.7% (n=172) of the women. Considering the women's sexual life, about 77.8% (n=137) of them complained of painful sexual intercourse with their partners. Nonetheless, about 87.5% of the women had a serious attraction to sex with partners. Again, about 94.9 % (n=167) of the women had difficulty concentrating in life resulting in the majority of the women feeling sad and worried about their illness (98.3%, n=173). Also, a vast majority of the women had trouble falling asleep (98.3%, n=173) in the night but 96.6% (n=170) of them claimed they were satisfied with how they were coping with their illness. 67 Determinants of Quality of Life of women Living with Cervical Cancer The study findings further revealed that 92% (n=162) of the women were losing hope in the fight against their illness, while 93.2% (n=164) were very much worried about dying. Psychologically, most of the women (93.2%, n=164) felt anxious about their illness and its prognosis while 98.9% (n=174) of them suffered abdominal cramps and dryness of the skin as symptoms. Details of the symptom status of women living with cervical cancer are presented in Table 4.4. 68 Determinants of Quality of Life of women Living with Cervical Cancer Table 4.4: Symptom Status of Women Living With Cervical Cancer Variables Frequency (n) Percent (%) Constipation Not at all 62 35.2 Yes 114 64.8 Total 176 100.0 Nausea Not at all 28 15.9 Yes 148 84.1 Total 176 100.0 Vomiting Not at all 42 23.9 Yes 134 76.1 Total 176 100.0 Diarrhoea Not at all 24 13.6 Yes 152 86.4 Total 176 100.0 Decreased Appetite Not at all 13 7.4 Yes 163 92.6 Total 176 100.0 Vaginal bleeding Not at all 24 13.6 Yes 152 86.4 Total 176 100.0 Pelvic pain Not at all 6 3.4 Yes 170 96.6 Total 176 100.0 Back pain Not at all 5 2.8 Yes 171 97.2 Total 176 100.0 Dizziness Not at all 18 10.2 Yes 158 89.8 Total 176 100.0 Vaginal Discharges Not at all 22 12.5 Yes 154 87.5 Total 176 100.0 Difficulty keeping the Not at all 24 13.6 legs still/ Yes 152 86.4 restless legs Total 176 100.0 Vaginal odour Not at all 49 27.8 Yes 127 72.2 Total 176 100.0 Vagina becomes too narrow Not at all 44 25.0 Yes 132 75.0 Total 176 100.0 Feeling tired or Not at all 4 2.3 fatigued Yes 172 97.7 Total 176 100.0 Painful sexual Not at all 39 22.2 intercourse Yes 137 77.8 Total 176 100.0 Trouble controlling my Not at all 74 42.0 urine Yes 102 58.0 Total 176 100.0 Not at all 83 47.2 It burns when I urinate Yes 93 52.8 Total 176 100.0 Difficulty Not at all 9 5.1 69 Determinants of Quality of Life of women Living with Cervical Cancer Variables Frequency (n) Percent (%) concentrating Yes 167 94.9 Total 176 100.0 I feel sad and worried Not at all 3 1.7 about my illness Yes 173 98.3 Total 176 100.0 I feel attractive to sex Not at all 22 12.5 Yes 154 87.5 Total 176 100.0 I feel nervous Not at all 18 10.2 Yes 158 89.8 Total 176 100.0 Trouble falling asleep Not at all 3 1.7 Yes 173 98.3 Total 176 100.0 I am satisfied with how Not at all 6 3.4 I am Yes 170 96.6 coping with my illness Total 176 100.0 I am losing hope in the Not at all 14 8.0 fight against my illness Yes 162 92.0 Total 176 100.0 I worry about dying Not at all 12 6.8 Yes 164 93.2 Total 176 100.0 I feel anxious about Not at all 12 6.8 my illness Yes 164 93.2 Total 176 100.0 Abdominal cramps and Not at all 2 1.1 skin dryness Yes 174 98.9 Total 176 100.0 * Total Mean Score of Symptom Status =3.21, SD=0.61, Min=1.81, Max=3.93 * The total mean score was calculated using the 5-point symptom Index scale for the total symptom status of the women living with cervical cancer. 4.5 Functional Status of Women Living With Cervical Cancer and QoL Another cardinal objective of the study was to determine the functional status of the women. The findings indicated that the overall mean score for functional status of the women was very high based on a 4-point scale (Mean=3.41, SD=0.51). This reflected the women’s ability to carry out their daily activities normally without assistance. Consistent with the aforesaid, about 75.6% (n=133) of the women were able to bath or shower on their 70 Determinants of Quality of Life of women Living with Cervical Cancer own, about 73.9% (n=130) of the women dressed without help, majority of the women visit the toilet (76.1%, n=134) on their own without difficulties. Also, most of the women were able to do their household activities (71%, n=125) such as bed making, sweeping, picking up items and dusting without assistance. About 70.5% (n=124) of the women sought assistance from relatives and spouse to do laundry work and other household business (paying water and light bills, do banking, selling and buying foodstuff). However, only 57.4% (n=101) of the women prepared their own meals, while about 56.8% (n=100) of the women attend and participate religious activities without assistance. For those who required assistance, the information was sought from relatives, friends, partners and spouse (40.3%, n=71). Moreover, less than half of the women had a good social relationship with friends and relatives (42 %, n=74). Table 4.5 below shows the details of the functional status of the women. 71 Determinants of Quality of Life of women Living with Cervical Cancer Table 4.5: Functional Status of Women Living With Cervical Cancer Variables Frequency (n) Percent (%) Showered or Did not do 1 0.6 bathed Did with a lot of help 7 4.0 Did with some help 35 19.9 Did by myself 133 75.6 Total 176 100.0 Got dressed Did with a lot of help 6 3.4 Did with some help 39 22.2 Did by myself 130 73.9 Missing Data 1 0.6 Total 176 100.0 Used the toilet Did with a lot of help 6 3.4 Did with some help 36 20.5 Did by myself 134 76.1 Total 176 100.0 Did light Did not do 2 1.1 housework Did with a lot of help 5 2.8 (make the Did with some help 43 24.4 bed, pick up Did by myself 125 71.0 things) Missing Data 1 0.6 Total 176 100.0 Did Did not do 3 1.7 moderate Did with a lot of help 15 8.5 housework Did with some help 33 18.8 (dusting) Did by myself 125 71.0 Total 176 100.0 Did the Did not do 7 4.0 laundry works Did with a lot of help 13 7.4 at home Did with some help 32 18.2 Did by myself 124 70.5 Total 176 100.0 Washed the Did not do 11 6.3 dishes Did with a lot of help 12 6.8 Did with some help 38 21.6 Did by myself 115 65.3 Total 176 100.0 Prepared Did not do 15 8.5 meals Did with a lot of help 12 6.8 Did with some help 48 27.3 Did by myself 101 57.4 Total 176 100.0 Took care of Did not do 14 8.0 household Did with a lot of help 13 7.4 business(pay Did with some help 81 46.0 72 Determinants of Quality of Life of women Living with Cervical Cancer Variables Frequency (n) Percent (%) the bills, do Did by myself 68 38.6 banking) Total 176 100.0 Did not do 15 8.5 Did grocery Did with a lot of help 28 15.9 shopping Did with some help 77 43.8 Did by myself 56 31.8 Total 176 100.0 Ran errands Did not do 15 8.5 (post office, Did with a lot of help 12 6.8 cleaners) Did with some help 56 31.8 Did by myself 93 52.8 Total 176 100.0 Attend and Did not do 5 2.8 participate in Did with a lot of help 13 7.4 religious Did with some help 58 33.0 activities Did by myself 100 56.8 Total 176 100.0 Participated in Did not do 13 7.4 social Did with a lot of help 19 10.8 clubs/function Did with some help 59 33.5 Did by myself 83 47.2 Missing Data 2 1.1 Total 176 100.0 Participated in Did not do 15 8.5 volunteer or Did with a lot of help 24 13.6 service Did with some help 71 40.3 organizations Did by myself 66 37.5 Total 176 100.0 Went out Did not do 12 6.8 socially with Did with a lot of help 17 9.7 friends or Did with some help 70 39.8 relatives Did by myself 74 42.0 Missing Data 3 1.7 Total 176 100.0 Total Mean score of Functional status = 3.41 Total SD= 0.51, Min=1.80, Max= 4. 00 4.6 General Health Perceptions of Women Living with Cervical Cancer and QoL Overall, the women had a high perception of general health (Mean=2.82) on a 4-point scale, SD= 0.64). However, only about 36.9% (n=65) of the women perceived a feeling of good health, 42.6% (n=75) had a feeling of being run down, 47.2% (n=83) felt that they were ill, 73 Determinants of Quality of Life of women Living with Cervical Cancer most of the women experienced symptom occurrences more than usual and this made them felt that they were actually ill (47.2%, n=83) and 43.2% (n=76) had pains rather than usual. Furthermore, 45.5% (n=80) of the women had tightness or pressure in their heads and 35.2% (n=62) perceived that they lost much sleep and worried as a result of their condition. Also, an equal proportion of the women (35.2%. n=62) had difficulty in falling asleep, while 42% (n=74) of the women were getting scared and panicky as a result of their condition. Moreover, about 40.3% (n=71) of the women realised that everything they do, they were not succeeding which is more than usual while 36.4% (n=64) of them felt nervous as a result of their illness. Some of the women managed to keep themselves busy and occupied (34.7%, n=61) and about 40.9% (n=72) of the women felt that they were doing something well which is more than usual. Only 36.4% (n=64) of the women perceived that they were satisfied with the way they carried out their task. Just 34.7% (n=61) of the women were able to enjoy their normal day to day activities more than usual. Worryingly enough, 39.2% (n=69) of the women perceived that they were considered worthless in the society and felt that their entire life was hopeless (38.6%, n=68). Thus, they perceived that life is not worth living (41.5%, n=73) and thought of the possibility of taking their own life (40.9, n=72). Moreover, about 37.5% (n=66) of the women perceived that they found themselves wishing they were dead and away from it at all as a result of their condition. Finally, about 39.8% (n=70) of the women found themselves thinking about ways of taking their own lives all the time. Table 4.6 below presents details of the descriptive statistics of the general health perceptions of women living with cervical cancer. 74 Determinants of Quality of Life of women Living with Cervical Cancer Table 4.6: General Health Perception of Women Living With Cervical Cancer Variables Frequency (n) Percent (%) Been feeling Not at all 12 6.8 perfectly well and in No more than usual 58 33.0 good health Rather more than usual 65 36.9 Much more than usual 41 23.3 Total 176 100.0 Not at all 3 1.7 Been run down and No more than usual 61 34.7 out of sorts Rather more than usual 75 42.6 Much more than usual`````````````` 37 21.0 Total 176 100.0 Felt that I am ill No more than usual 51 29.0 Rather more than usual 83 47.2 Much more than usual 42 23.9 Total 176 100.0 Been getting any Not at all 3 1.7 pains in your head No more than usual 57 32.4 Rather more than usual 76 43.2 Much more than usual 40 22.7 Total 176 100.0 Been getting a Not at all 3 1.7 feeling of tightness No more than usual 48 27.3 or pressure in your Rather more than usual 80 45.5 head Much more than usual 45 25.6 Total 176 100.0 Not at all 8 4.5 Lost much sleep No more than usual 56 31.8 over worry Rather more than usual 62 35.2 Much more than usual 50 28.4 Total 176 100.0 Had difficulty in Not at all 5 2.8 falling asleep No more than usual 59 33.5 Rather more than usual 62 35.2 Much more than usual 50 28.4 Total 176 100.0 Felt constantly under Not at all 14 8.0 strain No more than usual 46 26.1 Rather more than usual 67 38.1 Much more than usual 49 27.8 Total 176 100.0 Been getting edgy Not at all 18 10.2 and bad tempered No more than usual 52 29.5 Rather more than usual 61 34.7 Much more than usual 45 25.6 75 Determinants of Quality of Life of women Living with Cervical Cancer Variables Frequency (n) Percent (%) Total 176 100.0 Been getting scared Not at all 8 4.5 or panicky for no No more than usual 50 28.4 good reason Rather more than usual 74 42.0 Much more than usual 44 25.0 Total 176 100.0 Not at all 10 5.7 Found everything No more than usual 48 27.3 getting on top of Rather more than usual 71 40.3 you Much more than usual 47 26.7 Total 176 100.0 Not at all 11 6.3 Been feeling nervous No more than usual 53 30.1 and strung-up all the Rather more than usual 64 36.4 time Much more than usual 48 27.3 Total 176 100.0 Not at all 9 5.1 Been managing to No more than usual 61 34.7 keep yourself busy Rather more than usual 57 32.4 and occupied Much more than usual 48 27.3 Missing Data 1 0.6 Total 176 100.0 Not at all 6 3.4 Felt on the whole No more than usual 58 33.0 you were doing Rather more than usual 72 40.9 things well Much more than usual 40 22.7 Total 176 100.0 Not at all 10 5.7 Been satisfied with No more than usual 64 36.4 the way you’ve Rather more than usual 58 33.0 carried your task Much more than usual 44 25.0 Total 176 100.0 Not at all 4 2.3 Felt that you are No more than usual 66 37.5 playing a useful part Rather more than usual 60 34.1 in things. Much more than usual 46 26.1 Total 176 100.0 Not at all 12 6.8 Felt capable of No more than usual 48 27.3 making decisions Rather more than usual 66 37.5 about things. Much more than usual 50 28.4 Total 176 100.0 Not at all 22 12.5 Been able to enjoy No more than usual 49 27.8 your normal day to Rather more than usual 61 34.7 day activities. Much more than usual 44 25.0 76 Determinants of Quality of Life of women Living with Cervical Cancer Variables Frequency (n) Percent (%) Total 176 100.0 Not at all 29 16.5 Been thinking of No more than usual 32 18.2 yourself as a Rather more than usual 69 39.2 worthless person. Much more than usual 45 25.6 Missing Data 1 0.6 Total 176 100.0 Not at all 32 18.2 Felt that life is No more than usual 29 16.5 entirely hopeless. Rather more than usual 68 38.6 Much more than usual 47 26.7 Total 176 100.0 Felt that life isn’t Not at all 25 14.2 worth living. No more than usual 36 20.5 Rather more than usual 73 41.5 Much more than usual 42 23.9 Total 176 100.0 Thought of Not at all 18 10.2 possibility that you No more than usual 36 20.5 might make away Rather more than usual 72 40.9 with yourself. Much more than usual 50 28.4 Total 176 100.0 Not at all 28 15.9 Found wishing you No more than usual 36 20.5 were dead and away Rather more than usual 66 37.5 at all. Much more than usual 46 26.1 Total 176 100.0 Not at all 31 17.6 Found that the idea No more than usual 27 15.3 of taking your own Rather more than usual 70 39.8 life kept coming into Much more than usual 48 27.3 mind. Total 176 100.0 Total Mean score of General Health Perceptions = 2.82, Total SD=0.64, Min=1.16, Max=4.00 4.7 Relationship between Symptom Status, Functional Status, General Health Perception and QoL of the Women Another primary objective was to determine the relationship between symptom status, functional status, general health perception and quality of life of the women. The results of Pearson Product Moment Correlation Coefficient (r) showed that there was a negative and 77 Determinants of Quality of Life of women Living with Cervical Cancer significant relationship between total symptom status (severity) and total quality of life of the women (r= -0.16, p=0.03). This means that a unit increase in symptom status (severity) of the women is associated with 16% decrease in their total quality of life. This means that when the symptoms severity of the women is high, it affects the quality of life of the women negatively. However, there was no significant correlation between total functional status and total quality of life of the women (r= -0.11, p= 0.17). This also explained that total functional status of the women has no significant relationship with their total quality of life. Moreover, for the total general health perception, there was no significant relationship between general health perception and total quality of life of the women (r= 0.04, p=0.57). Table 4.7 below presents details of the correlations between symptom status, functional status, general health perceptions and QoL of the women. Table 4.7: Correlation between Symptom Status, Functional Status, General Health Perception and QoL of the Women Variables TOTAL QUALITY OF LIFE Pearson’s (r) P-value (2-tailed) Total Symptom Status (Severity) -0.16 < 0.03 Total Functional Status - 0.11 0.17 Total General Health Perception 0.04 0.57 Criterion level: 0.05 4.8: Influence of Demographic Characteristics, Symptom Status, Functional Status, General Health Perception and Environmental Characteristics on QoL A multiple linear regression analysis was performed to determine if demographic characteristics (model 1), total symptom status (Model 2), total functional status (Model 3), total general health perception (Model 4) and total environmental characteristics (Model 5) significantly accounted for the variance in quality of life among the women. 78 Determinants of Quality of Life of women Living with Cervical Cancer In the first model, demographic characteristics which are also referred to as individual characteristics of the women by the revised Wilson-Cleary health-related quality of life model were fed into the regression model. The regression results indicated that the demographic characteristics of the women (age, marital status and education) collectively explained 15% of the variance in quality of life [R2 = 0.150, F (3,166) =9.756, P < 0.001]. When the predictors (age, marital status and educational level) were evaluated for their contributions to the model, all demographic characteristics were found to significantly predict the quality of life of the women. In the second model, when the total score for symptom status was added to demographic characteristics, both jointly explained 17.4% of the variance in quality of life [R2 = 0.174, F (4,163) =8.571, P < 0.001]. When total symptom status was evaluated for its contribution to the model, it contributed 15.7% of the explanatory power of the model. Overall score of symptom status (B= -.157, p= 0.031) was thus a significant predictor of quality of life of the women. For the third model of the regression analysis, when overall (total) score of functional status was added, they collectively explained 19.7% of the variance in quality of life [R2 = 0.197, F (5,159) =7.821, P <0.001]. When total functional status was evaluated for its contribution, it accounted for 19.9% of the model’s explanatory power. Also, total functional status (B=0.199, p= 0.032) was a significant predictor of quality of life of the women in model three (3). In the fourth model, general health perception was added to the third model and the variables jointly explained 20.5% of the variance in the women’s quality of life [R2 = 0.205, F (6,158) =6.807, P <0.001]. General health perception contributed 15.3% to the model but this was not statistically significant (B= -0.153, P=0. 209). 79 Determinants of Quality of Life of women Living with Cervical Cancer In the final model, environmental characteristics were finally fed into the model and collectively explained 26.7 % of the variance in the women’s quality of life [R2 = 0.267, F (7, 87) =4.524, p<0.001]. The contribution of environmental characteristics to the model is 31.6%. In this model however, only environmental characteristics (p=0.008) and age (p=0.028) were significant predictors of the women's total quality of life. Details of these predictors are shown in Table 4.8 below. 80 Determinants of Quality of Life of women Living with Cervical Cancer Table 4.8: Influence of Demographics (Individual) Characteristics, Symptom Status, Functional Status, General Health Perception and Environmental Characteristics on QoL Predictors Unstandardized Standardized t- p- r Coefficients Coefficients Value Value B Std. Beta Error (Constant) 2.831 .261 10.840 .000 Model Age .214 .061 .257 3.518 .001 .263 1 Marital status -.174 .055 -.229 -3.134 .002 -.236 Educational .137 .043 .229 3.196 .002 .241 background Model 1 Summary: R2 = 0.150, F (3,166) =9.756, P <0.001 (Constant) 3.157 .300 10.521 .000 Model Age .203 .061 .243 3.327 .001 .252 2 Marital status -.160 .055 -.211 -2.877 .005 -.220 Educational .149 .043 .249 3.461 .001 .262 background Total Symptom -.111 .051 -.157 -2.171 .031 -.168 Status Model 2 Summary: R2 = 0.174, F (4,163) =8.571, P < 0.001 (Constant) 2.783 .346 8.048 .000 Model Age .222 .061 .266 3.613 p<.001 .275 3 Marital status -.168 .055 -.221 -3.023 .003 -.233 Educational .123 .045 .207 2.774 .006 .215 background Total Symptom -.188 .062 -.267 -3.024 .003 -.233 Status Total Functional .195 .090 .199 2.163 .032 .169 Status Model 3 Summary: R2 = 0.197, F (5,159) =7.821, P <0.001 Model (Constant) 2.668 .357 7.479 .000 4 Age .232 .062 .278 3.757 p<.001 .286 81 Determinants of Quality of Life of women Living with Cervical Cancer Predictors Unstandardized Standardized t- p- r Coefficients Coefficients Value Value B Std. Beta Error Marital status -.170 .055 -.225 -3.071 .003 -.237 Educational .122 .044 .205 2.753 .007 .214 background Total Symptom -.130 .077 -.185 -1.686 .094 -.133 Status .253 .101 .258 2.503 .013 .195 Total Functional Status Total General -.103 .081 -.153 -1.261 .209 -.100 Health Perception Model 4 Summary: R2 = 0.205, F (6,158) =6.807, P <0.001 Model (Constant) 2.691 .462 5.826 .000 5 Age .184 .082 .220 2.237 .028 .233 Marital status -.119 .074 -.157 -1.604 .112 -.170 Educational .037 .066 .061 .559 .577 .060 Background -.036 .106 -.051 -.343 .733 -.037 Total Symptom Status Total Functional .213 .131 .218 1.624 .108 .171 Status Total General -.155 .107 -.232 -1.453 .150 -.154 Health Perception Total .002 .001 .316 2.701 .008 .278 Environmental Characteristics Model 5 Summary: [R2 = 0.267, F (7, 87) =4.524, p<0.001] Dependent Variable: Total Quality of Life Index: Criterion level: 0.05 4.9 Summary of Results In all the findings, the study revealed the majority of the women were aged between 40-49 years (47.2%, n=83). Approximately 42% (n=74) of the women were divorced while only 27.3% (n=48) were married. Concerning employment status of the women, the majority (47.2%, n=83) of them were not employed while 25.6% (n=45) were fully employed with 82 Determinants of Quality of Life of women Living with Cervical Cancer good jobs. Furthermore, the majority of the women were not financially sufficient and had no access to loan facility (47.7%, n=84) to support their treatment cost. Almost all of the women were financially constrained (98.9%, n=174) due to their health and treatment modalities. About 30.7% (n=54) of the women were earning below five hundred Ghana cedi (GH¢500) per month. In terms of the women quality of life, the findings of the study indicated that the total mean score for quality of life of the women was moderate (Mean= 3.54, SD=0.70) which showed the moderate quality of life among these women. This was measured based on health and functioning QoL, social and economic QoL, family support QoL and psychological and spiritual dimension of QoL and all the four dimensions of QoL recorded moderate. However, various symptoms were highly prevalent amongst the women on a 5-point scale, the total mean score for the overall symptom status was high (Mean=3.21, SD=0.61) which indicated a high presence of symptoms of cervical cancer in the women. Apart from that, the total mean score for functional status of the women was high (Mean=3.41, SD=0.51) which reflected the women’s ability to carry out their daily activities normally without assistance. Also, general health perception of the women was assessed and the total mean score were high (Mean= 2.82, SD=0.64) even though the women exhibited lower perception in the each items of general health perceptions. About 39.2% (n=69) of the women perceived that they were considered worthless in the society and felt that their entire life was hopeless (38.6%, n=68). Thus, the women perceived that life is not worth living (41.5%, n=73) and thought of the possibility of taking their own life (40.9%, n=72) while about 37.5% (n=66) of the women perceived that they found themselves wishing they were dead and away from it at all as a result of their condition. 83 Determinants of Quality of Life of women Living with Cervical Cancer Considering the relationship between the variables of interest in the study, only total symptom status correlated with total quality of life of the women negatively, though there is significant relationship (r= -0.16, p=0.03). This means that a unit increase in symptom status of the women culminates in a corresponding decrease in their total quality of life. Indicating that when the symptoms status of the women is high, its affects the quality of life of the women negatively. The other variables showed no significant association with QoL. Finally, multiple linear regression was used to determine if demographic characteristics (model 1), total symptom status (Model 2), total functional status (Model 3), total general health perception (Model 4) and total environmental characteristics (Model 5) significantly accounted for the variance in quality of life among the women. The aforementioned predictors jointly explained 26.7 % of the overall variance in the women's quality of life [R2 = 0.267, F (7, 87) =4.524, p<0.001]. However, only environmental characteristics (p=0.008) and age (p=0.028) from the individual characteristics were significant predictors of the women’s total quality of life in the final model. 84 Determinants of Quality of Life of women Living with Cervical Cancer CHAPTER FIVE DISCUSSION OF FINDINGS This chapter discusses the findings of the current study. The demographic characteristics of the participants are discussed first, followed by the key findings of the study. These have been organized according to the study objectives. 5.1 Demographic /Individual Characteristics The revised Wilson-Cleary HRQoL Model also defined this demographic information as the individual characteristics of patients (Ferrans, Zerwic, Wilbur, & Larson, 2005; Wilson & Cleary, 1995). The study found that most of the women (47.2%) were within the age range of 40-49 years and 29% were above 50 years. This suggests that about 76.2% of the sample were at least 40 years. This finding is not in isolation as Raychaudhuri and Mandal, (2012) in an Indian study found that women between 25 and 49 years were particularly vulnerable to the disease. The researchers ascribed early marriage or early exposure to sexual activities as key factors for their findings. Whilst this suggestion is in line with the disease literature, the researcher did not focus on early marriage and early sexual exposure as the key findings of this study. Furthermore, a large portion of the sample in the current study (42%) were divorced or separated with additional 23.9% being single whiles only 27.3% remained married and living with their partners. In contrast, the Ghana Statistical Services and Demographic and Health Survey (GSS, 2015) found that among the 15-49-year-old females, divorced persons were just 7.7% as opposed to the 42% recorded in this study. Similarly, the GDHS found that 42.2% of Ghanaian women are married which is at variance with the 27.3% found in the current study. The foregoing suggests that not being married or getting divorced tend to 85 Determinants of Quality of Life of women Living with Cervical Cancer be higher amongst women with cervical cancer. Indeed, previous studies also support this assertion (Chan et al., 2015; Li, Chen, Chang, Chou, & Chen, 2015). The current study also revealed that majority of the women were secondary school leavers (32.4%) and additional 18.2% had received tertiary education. Only 9.1% had no formal education. Even though there are limited studies that link higher education to cervical cancer, these findings reflected those of Raychaudhuri and Mandal (2012) who also reported that 46.6% of cervical cancer patients had at least primary education. However, Fotra, Gupta, and Gupta (2014) reported that the incidence of cervical cancer was higher in women with lower education. It is instructive to note however that, both the previous studies and the current one were hospital-based studies amongst patients receiving cervical cancer treatment. In these settings, it is most likely that cervical cancer patients who are financially less endowed may not access treatment especially in the case of Ghana where the treatment of cervical cancer is not covered by the National Health Insurance Scheme (National Health Insurance Authority Annual report, 2016). It is against these reasons of inconsistent findings that, it might be worth investigating the socio-demographic determinants of cervical cancer and its treatment in Ghana. 5.2 Environmental Characteristics of Women Living with Cervical Cancer and QoL Concerning employment status of the women, about 47.2% of them were not employed while 25.6% were fully employed with good jobs. Higher educational qualifications of these women could have earned the women permanent jobs to enhance their finances. These environmental characteristics are similar to those reported among women in a previous study (Parrish & Mason, 2013). Notwithstanding, the current study results showed that some of the women themselves battled to pay for their cost of their treatment (38.1%) while only 8.5% of the women had 86 Determinants of Quality of Life of women Living with Cervical Cancer some support from their husbands. The low economic status of these women is an indication that most of the women might not be able to pay for their medical treatment, thus result to low quality of life. Husbands and partners rather choose to divorce these women instead of supporting them financially, psychologically, socially and spiritually to integrate with the society and improve their quality of life (Chan et al., 2015; Li et al., 2015; Osann et al., 2014; Parrish & Mason, 2013). The present study findings further indicated that about 98.9% of all the women were financially constrained. This is because most of the women were not formally employed and the majority of the women were petty traders and earned a very low income from these small-scale businesses. The issue was compounded because the majority of these women were in their 40 to 50 years of age and could do little to earn enough income to boost their finances. These findings were not different from previous studies which also reported the poor financial status of women with cervical cancer (Chan et al,. 2015; Osann et al., 2014; Parrish & Mason, 2013; Tanturovski, Zafirova, & Basheska, 2013). 5.3 Quality of Life of Women Living with Cervical Cancer The women who were assessed in this current study reported moderate quality of life. The overall mean score (Mean=3.54, SD=0.70) of the total quality of life of the women on a 6- point scale was moderate. This indicates that the women who were generally receiving treatment as at the time of data collection presented moderate quality of life. Again, the results showed that the women were moderate in all the four components of quality of life (health and functioning, social and economic, family support and psychological and spiritual measures of QoL). Even though the women exhibited moderate QoL across the four components, they rated their psychological and spiritual dimensions of QoL (Mean= 3.75, SD=0.82) and family support (Mean= 3.54, SD=0.89) higher than their health and 87 Determinants of Quality of Life of women Living with Cervical Cancer functioning component of QoL (Mean= 3.54, SD=0.75) as well as social and economic aspect of their QoL (Mean= 3.35, SD=0.79). The moderate level of quality of life of the women found in this study has also been reported similarly in some earlier studies (Faller et al., 2017; Heydarnejad, Hassanpour, & Solati, 2011). These findings, however, appear to contradict with findings of Khalil et al. (2015) in Morocco, and Brunton et al. (2015) in England who found that women living with cervical cancer have generally a good global QoL compared with healthy controls. However, socio-cultural differences in the perception of QoL between Moroccans and Ghanaians, in the current study unlike the work of Khalil and colleagues (2015), did not compare cervical cancer sufferers with healthy controls. Moreover, there were moderate health and functioning component of quality of life reported in this study. This suggested that the women’s health and functioning were to some extent impaired which explained the women’s inability to undertake some of their family responsibilities. This was probably due to the fact that the burden of symptoms was quite high with poor perception of the general health components. Even though these findings tend to contradict with Iranian cervical cancer and QoL study findings by Torkzahrani et al. (2013), it is worth noting that the moderate social and economic component of QoL reported in the present study corroborates with previous works including those of the Iranians (Torkzahrani et al., 2013; Wenzel et al., 2005). Furthermore, for family support of the women, the present study revealed that family support given to these women was moderate. This explained that the women’s emotional support given by the family members, some spouses and partners was low. This could probably be due to the poor sex life of the women in terms of their partners and the perceived stigma attached with the illness from the family members. This finding also contradict with previous studies conducted in Taiwan (Li, Chen, Chang, Chou, & Chen, 88 Determinants of Quality of Life of women Living with Cervical Cancer 2015) and Northwestern China (Liu, Wang, Zhou, & Li, 2014) about the family support systems. Finally, the present study findings showed that the women’s psychological and spiritual functioning of quality of life was moderate and suggests that the women tend to have some trust and hope in their spiritual belief systems (Mean=4.32, SD=1.26). Psychologically, the women belief that they had not achieved any of their personal goals (especially good health), and this potentially led to dissatisfaction with their lives. Their peace of mind was disturbed and their ability to cope with life daily was low. Similar problem of psychological functioning component of quality of life was reported by Osann et al. (2014) in California, USA. 5.4 Symptom Status of Women Living with Cervical Cancer and QoL Symptom status is an important determinant of patients’ quality of life (Wilson & Cleary, 1995). The current study found that the prevalence of various symptoms of cervical cancer was high amongst the women but with moderate severity (Mean=3.21, SD=0.61). The most prevalent symptoms varied considerably from pelvic pain, back pain, vaginal bleeding, vaginal odour, vaginal discharge, diarrhoea, vomiting, and painful sexual intercourse were affecting the women's quality of life negatively and only a few of the women were satisfied with their life without presenting many symptoms. Particularly, about 96.6% and 97.2% of the women reported severe pelvic and back pains respectively which are characteristics of the side effects of treatment type such as chemotherapy and radiation therapy the women were undergoing. Obviously, such pain tends to adversely impact the QoL of patients to the moderately impaired QoL found in the current study. Consistent with the medical literature of the disease (Chan et al., 2015; Ferrandina et al., 2012; Li et al., 2015; Mantegna et al., 2013; Satwe et al., 2014; 89 Determinants of Quality of Life of women Living with Cervical Cancer Torkzahrani et al., 2013), the women who participated in the current study reported frequent vaginal bleeding (86.4%), vaginal discharge (87.5%), vaginal odour (72.2%) and painful sexual intercourse (77.8%). These are all symptoms that seriously affect the quality of life of these women with potential risks of depression, sexual dysfunction, family despair and sometimes stigma and low self-worth. The symptoms may partly explain the characteristically high rates of divorce or partner separation among cervical cancer sufferers. Furthermore, the findings of the present study also indicated that vomiting (76.2%), nausea (84.1%), decreased appetite (92.6%) and diarrhoea (86.4%) were obvious symptoms suffered by the women, which may also result from the treatment type. Thus, stakeholders need to consider these side effects by getting its solution or a relief for these women. However, the existence of these side effects are in consonance with existing literature (Collins et al., 2017; Satwe, Salunkhe, & Satave, 2014; Vistad, Cvancarova, Kristensen, & Fosså, 2011). These symptoms perhaps explain the high fatigue (97.7%) reported by the women, thus affecting their quality of life negatively. Due to fatigue experienced by these women, some of the women individually sought assistance from family members and friends to do some of their daily routine activities for them. These activities were laundry work and going to social events. These findings corroborates with those of Davidson (2011); Sekse, Hufthammer and Vika (2015); Steen, Dahl, Hess and Kiserud (2017) who were emphatic that fatigue experienced by cervical cancer sufferers impaired their daily functional activities, thus affecting their quality of life negatively (Sekse et al., 2015: Zeng et al., 2016). It was obvious that the multiplicity of symptoms had a psychological impact on the women as the women experienced devastation with about 94.9% of the women reporting difficulty 90 Determinants of Quality of Life of women Living with Cervical Cancer in concentrating in life. Aside those, about 98.3% were feeling worried and sad about their illness, while equal participants of 98.3% of the women had trouble falling asleep. As has been reported in similar studies, without professional psychological assistance, these could result in severe mental health problems including depression and suicidal attempts (Ferrandina et al., 2012; Hobbs et al., 2008; Kim & Kang, 2015; Stafford et al., 2016; Xiang, 2015). Concerning coping mechanism of the women in this study, about 96.6% claimed they were trying all possible coping techniques to withstand all perceptions about their illness and the societal perceptions of the stigma attached. Some of the women became religiously oriented, trying to show their faith in God and trust that God will cure their illness miraculously while others decided to engage in recreational activities, occupying and making them busy to avoid negative thinking about their illness. Though it appears that majority of the women were doing all their best to cope, their coping mechanisms were weak and more or less poor because many of them were losing hope in the fight against their illness. Similar findings of lost hope and despair amongst cancer sufferers has been reported in the previous studies (Hobbs, et al., 2008; Pfaendler, Wenzel, Mechanic, & Penner, 2015; Xiang, 2015). Cumulatively, the women’s productivity are likely to reduce due to the women high symptoms status (Collins et al., 2017; Davidson, 2011; Satwe, Salunkhe, & Satave, 2014) which compounds the myriad of challenges facing women with cervical cancer including financial constraints, high cost of treatment, lack of spousal or partner support and access to specialised care (oncology clinics) (Chan et al., 2015; Heinonen, Tapper, Leminen, Sintonen,& Roine, 2013; Heydarnejad, Hassanpour, & Solati, 2011; Li et al., 2015). 91 Determinants of Quality of Life of women Living with Cervical Cancer 5.5 Functional Status of Women Living with Cervical Cancer and QoL Functional status of the women is very crucial in assessing their quality of life. This assessment is about the daily activities carried out by these women. This current study found that the total mean score for functional status of the women was high on a 4-point scale (Mean=3.41, SD=0.51) which was very good and this indicated that the women had physical ability to carry out their daily activities normally without assistance as reported in a previous study in Turkey (Goker et al., 2011). This was expected because women with advanced stage of cervical cancer were not included in this present study. Majority (75.6%) of the women reported that they were physically stronger enough to carry out their daily activities like bathing, dressing and preparing their meals and even visiting the toilet places conveniently without difficulties. This indicated that the women’s physical conditions were not a problem but rather the women’s mental well-being affected their quality of life. This assertion is line with previous studies (Cesari et al., 2013; Overcash, 2015). Meanwhile, some physical activities including participation in religious activities, payment of light and water bills, doing banking activities, selling and buying foodstuff for the family were reported being assisted by the caregivers and spouses. 5.6 General Health Perceptions of Women Living with Cervical Cancer and QoL In the current study, it was found that the total mean score of general health perception of the women was 2.82 on a 4-point scale (SD=0.64). The women harboured high negative perceptions pertaining to their general health which might have contributed to moderate impairment in the women’s quality of life. This assertion of high negative perception which may result in high anxiety and, was earlier reported by Brunton et al. (2015) in England and Heinonen et al. (2013) in Finland. 92 Determinants of Quality of Life of women Living with Cervical Cancer Particularly, the present study revealed that about 47.2% of the women perceived that they were ill. This result was expected because some of the women were not psychologically relaxed due to the frequent symptom occurrences which may affect their QoL negatively as reported in Brazil and Iran (Fernandes & Kimura, 2010; Torkzahrani et al., 2013). Sadly, it is worth noting that some of the women were thinking of life not been worth living (41.5%) and thought of different ways that they might use to take away the women’s lives. This finding is a clear call on authorities to pay greater attention to the psychosocial needs of these women to avert the risk of suicide which has been on the rise in recent times in Ghana (Oppong & Meyer-Weitz, 2017). The above findings are not isolated but corroborates with previous studies conducted in Iran, New South Wales, Gwangju- South Korea, and Bergen-Norway (Heydarnejad et al., 2011; Hobbs et al., 2008; Kim & Kang, 2015; Sekse et al., 2015). 5.7 Relationship between Symptom Status, Functional Status, General Health Perception and QoL of the Women This study revealed a negative but significant relationship between total symptom status and total quality of life (r= -0.16, p=0.03). The findings explained that when symptom severity of the women increases, it is associated with a decrease in the quality of life of the women. This finding is not surprising as similar studies have reported symptom status as an important factor that correlates quality of life amongst cervical cancer sufferers (Kim et al., 2015). Furthermore, the present study indicated that there was no significant correlation between functional status and quality of life of the women (r= -0.11, p= 0.17). Moreover, the study found that the general health perception of the women was not significantly related to quality of life (r=0.04, p=0.57). These findings are however, at variance with previous 93 Determinants of Quality of Life of women Living with Cervical Cancer studies which reported significant correlations between functional status, general health perceptions and quality of life in Brazil, Turkey, Taiwan, Columbus- USA and Iran (Fernandes & Kimura, 2010; Goker et al., 2011; Li et al., 2015; Overcash, 2015; Torkzahrani et al., 2013). The variation in findings is partly attributed to difference in the socio-cultural settings in which the studies were conducted. 5.8 Influence of Demographic Characteristics, Symptom Status, Functional Status, General Health Perception and Environmental Characteristics on QoL Using Revised Wilson-Cleary HRQoL Model (Ferrans et al., 2005) the study sought to examine the predictors of quality of life of the women. The model defined individual characteristics as demographic characteristics. The study revealed that the demographic characteristics of the women (age, marital status and educational background) jointly explained 15% of the variance in the women’s quality of life but only age was a statistically significant predictor in the model suggesting the relevance of age of the women in the estimation of quality of life. Furthermore, all the predictors of quality of life collectively explained 26.7 % of the total variance in the women’s total quality of life. In the intermediary models, symptom status of the women also significantly predicted quality of life which further accentuates the importance of effectively managing the symptoms of cervical cancer patients. However, in the final model, out of the five predictors (total symptom status, total functional status, total general health perception, individual/demographics characteristics and total environmental characteristics), only environmental characteristics and age were statistically significant in predicting the women’s quality of life. This estimated how relevant environmental characteristics such as socioeconomic status, employment status and any financial support 94 Determinants of Quality of Life of women Living with Cervical Cancer are needed to improve quality of life of these women. These findings were in line with Zeng, Cheng, Liu and Feuerstein, (2016) in China. In summary, there was a general moderate total quality of life of the women, good functional status was recorded indicating that they can do their basic activities normally without assistances, general health perceptions were generally high depicting high negative perceptions harboured about the women concerning their illness, and most importantly the women were not having good financial strength. The women are petty traders and have low financial family history which cannot support them to pay for the cost of their medical treatment. 95 Determinants of Quality of Life of women Living with Cervical Cancer CHAPTER SIX SUMMARY, IMPLICATIONS, LIMITATIONS, CONCLUSIONS AND RECOMMENDATIONS This chapter presents a summary of the whole study, discusses study implications, limitations, conclusion, and makes recommendations based on the study findings. 6.1 Summary of the Study Cancer is a disease that may put people to fear, panic, perceived or real social stigma and decreased quality of life (QoL). Cervical cancer is the fourth most frequent cancer among women in the world with about 527,624 cases diagnosed and 265,672 mortalities annually (Bruni et al., 2017). Furthermore, about 3,052 new cervical cancer cases are diagnosed and 1,556 deaths occur annually in Ghana (Bruni, Barrionuevo-Rosas, Albero, Serrano et al., 2017). This study investigated the quality of life of women living with cervical cancer in the Ghanaian contexts. A quantitative approach with a cross-sectional survey design was used to collect data from a sample of 176 women living with cervical cancer in three hospitals in the Greater Accra Region of Ghana. Four different instruments were adopted and slightly modified to suit the study content. Total items for the four instruments are 95 items, in addition, 8 items from a structured demographic and environmental data of the participants based on the model. The data were analysed using the Statistical Package for Social Sciences (SPSS) version 20.0. Pearson‘s Product Moment Correlation (Pearson‘s r) was used to test the relationship between symptom status, functional status, general health perception and quality of life of the women whilst Multiple Linear Regressions was used to determine the extent to which 96 Determinants of Quality of Life of women Living with Cervical Cancer demographic/individual characteristics, symptom status, functional status, general health perception and environmental characteristics predict quality of life of the women. The findings showed that the women were having financial challenges, symptom status and general health perceptions were also negatively affecting the women’s quality of life whilst functional status of the women was good. The quality of life of the women was assessed based on health and functioning, social and economic, family support as well as the psychological/spiritual functioning. All these dimensions of quality of life of the women recorded moderate scores, portraying that the women had moderate quality of life. Furthermore, the women’s symptom severity generally were found to be high (Mean=3.21, SD=0.61) suggesting that there was a high presence of symptoms of cervical cancer among the women. However, the findings of the study indicated that the total functional status of the women was high (Mean=3.41, SD=0.51) which was very good and this indicated that the women’s general ability to carry out their daily activities normally without assistance was good. Also, the general health perceptions of these women were generally perceived to be negative and these wrong perceptions led to moderate quality of life of the women. The findings of this study further showed a negative but significant correlation between total symptom status and total quality of life of the women. However there was no significant correlation between functional status and quality of life. These results are consistent with the constructs of the Revised Wilson-Cleary Conceptual Model of Health-Related Quality of Life which suggested that symptom status, functional status, and general health perception had an influence on total quality of life. The model explained further that the women’s individual and environmental characteristics also influenced the total quality of life. 97 Determinants of Quality of Life of women Living with Cervical Cancer The two determinant factors (environmental characteristics and age from individual/demographic characteristics) were significant predictors of total quality of life of the women. This finding indeed supports the assertion of the Revised Wilson-Cleary Conceptual Model of Health-Related Quality of Life that all the constructs either individually or combined together determine the women's overall quality of life. Results from the current study, also validated the Revised Wilson-Cleary Conceptual Model of Health-Related Quality of Life of women living with cervical cancer. 6.2 Implications of the study The findings of this study have implications for the nursing and midwifery practice, policy formulation and future research. 6.2.1 Nursing and Midwifery Practice The study found that different dimensions of care are required to achieve an overall quality of life of the women. Hence, there is no need relying on one cadre of professional staff for all situations. For instance, whilst two health-related determinant factors (environmental characteristics and age from the demographics characteristics) significantly predicted the quality of life, only age explained a significant portion of the individual factors of the women and environmental characteristics became the only major predictor of the women's total quality of life. These findings imply that nurses and midwives need to understand their own competencies about nursing care, skills and knowledge levels needed to provide specialised care to these cervical cancer women. Thus, nurses needed to constantly assess the women‘s needs and adopt appropriate management strategies in order to maintain and promote their total quality of life. 98 Determinants of Quality of Life of women Living with Cervical Cancer 6.2.2 Policy Formulation There is currently no substantive policy on cancer treatment and it’s funding in Ghana, especially cervical cancer. Nonetheless, the government of Ghana need innovative policy interventions of cancer treatment and funding in order to support the cost of medical treatment of these women, especially women living with cervical cancer in Ghana. Consequently, there is the need for a national policy on the funding of cancer treatment for all cancer patients. There should be a national policy that encourages various support groups to donate to support the cancers patients. 6.2.3 Future Research Since the focus of this study was not on the socioeconomic status and treatment modalities of the cervical cancer patient, an in-depth exploration of patient’s socioeconomic status and treatment cost as well as treatment modalities of these women need to be investigated. This will inform policy directions in the future. 6.3 Limitations of the Study This current study used a cross sectional study design which could be a limitation to this study. As a cross sectional study, only relationships between variables were established and not cause and effect (Polit and Beck, 2013). Therefore, the study did not establish the cause and effect of quality of life and the determinants but rather the relationship that exists between them. Also, the questionnaire adopted for the current study was slightly modified to ease understanding of the participants and for analysis issues but it was not ethnographically modified. However, the cultural sensitivity of cervical cancer was considered when the questionnaire was slightly modified. Women who could not speak English and Twi were 99 Determinants of Quality of Life of women Living with Cervical Cancer disadvantaged because those people were excluded. Again, if proper interpretations are not given, it would affect the findings of the study. 6.4 Conclusion of the Study Ghanaian women living with cervical cancer have high presence of various symptoms which affected the women’s quality of life negatively. Also, there was good functional status of these women, thus they have the general ability to carry out their daily activities normally. However, a few of these women sought assistance from caretakers for some of their activities such as doing laundry works. There was a negative significant relationship between symptom status and total quality of life of these women. On the other hand, the women had high negative perceptions about their general health and thus the overall quality of life of these women was affected negatively. The findings suggest that these women struggled with financial and mental health issues which affected their quality of life. There is the need for a national policy to support the cost of treatment for these women. 6.5 Recommendations Based on the study results, the following recommendations were made to the Ministry of Health, Ministry of Gender, Children and Social Protection, and Nursing and Midwifery Council of Ghana. 6.5.1 To Ministry of Health (MOH) The Ministry of Health (MoH) should: 1. Establish national cancer fund headed by the sector Minister to provide financial support to the patients especially women with cervical cancer. 2. Develop a policy to include cervical cancer treatment in the National Health Insurance Scheme. 100 Determinants of Quality of Life of women Living with Cervical Cancer 3. Develop a policy framework for functional counselling of women with cervical cancer. 4. Institute a comprehensive education on cervical cancer screening and remove barriers in order to promote women health. 6.5.2 Ministry of Gender, Children and Social Protection The Ministry of Gender, Children and Social Protection should: 1. Collaborate with various stakeholders to demystify the preconceived perception and stigma attached to cancer illness especially women living with cervical cancer through regular health education. 2. Include cervical cancer women to the Livelihood Empowerment against Poverty (LEAP) programme to improve their quality of life. 3. Involve male or spousal support of the care of women living with cervical cancer in the community. 6.5.3 Ghana Health Service and Christian Health Association of Ghana The Ghana Health Service (GHS) and the Christian Health Association of Ghana (CHAG) should: 1. Implement a functional establishment of the national cervical cancer fund across the health facilities in Ghana. 2. Collaborate with National Health Insurance Authority stakeholders to ensure that there is full implementation of the cervical cancer inclusion policy. 3. Develop a structured in-service training programme for current and prospective nurses and midwives about cervical cancer management strategies and care. 101 Determinants of Quality of Life of women Living with Cervical Cancer 6.5.4 To Nursing and Midwifery Researchers 1. Researchers in the field of nursing should explore the socioeconomic status and cost of treatment of cervical cancer and the quality of life of these women. 2. 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Chinese Journal of Cancer. https://doi.org/10.5732/cjc.013.10139. 113 Determinants of Quality of Life of women Living with Cervical Cancer APPENDICES Appendix A: Research Questionnaire 114 Determinants of Quality of Life of women Living with Cervical Cancer 115 Determinants of Quality of Life of women Living with Cervical Cancer 116 Determinants of Quality of Life of women Living with Cervical Cancer 117 Determinants of Quality of Life of women Living with Cervical Cancer 118 Determinants of Quality of Life of women Living with Cervical Cancer 119 Determinants of Quality of Life of women Living with Cervical Cancer 120 Determinants of Quality of Life of women Living with Cervical Cancer 121 Determinants of Quality of Life of women Living with Cervical Cancer 122 Determinants of Quality of Life of women Living with Cervical Cancer Appendix B: Ethical Clearance from Noguchi Memorial Institute for Medical Research 123 Determinants of Quality of Life of women Living with Cervical Cancer Appendix C: Ethical Clearance from Korle-Bu Teaching Hospital 124 Determinants of Quality of Life of women Living with Cervical Cancer Appendix D: Departmental Approval Letters from School of Nursing and Midwifery 125 Determinants of Quality of Life of women Living with Cervical Cancer 126 Determinants of Quality of Life of women Living with Cervical Cancer Appendix E: Consent Form 127 Determinants of Quality of Life of women Living with Cervical Cancer 128 Determinants of Quality of Life of women Living with Cervical Cancer 129 Determinants of Quality of Life of women Living with Cervical Cancer 130