Medicine, Faculty of
Population and Public Health (SPPH), School of
DSpace
UBCV
Zhou, Chuanlin
Master of Science - MSc
University of British Columbia
Introduction: Despite being preventable, cervical cancer is the leading cancer with respect to both incidence and mortality among women in East Africa. In Uganda, the mortality rate is nearly six times the global average. There are many indirect social consequences of cervical cancer that affect patients and their families, including changes in support networks, caregiving responsibilities, and school attendance among children. Therefore, this thesis aims to describe and understand the social impacts of a cervical cancer diagnosis and treatment on women in Uganda, and her children, family, and other relationships. Methods: This qualitative analysis is part of a larger mixed-methods cross-sectional study: ASPIRE Generations. Women were recruited using stratified purposeful sampling for a demographically diverse sample. This analysis used an interpretive phenomenological approach. Data analysis followed a modified inductive approach, guided by our research objectives. Results: A total of 24 women participated in the semi-structured interviews. Analysis of the interviews generated 4 major themes: (1) disclosure and changes in relationships, (2) support, (3) loss of work and income, and (4) household impacts. While women had varying experiences, the overall impacts were negative and widespread. Women generally reported that her cervical cancer negatively affected relationships with friends and family, when she chose to disclose her diagnosis. It also had an impact on the entire household, particularly on her caregivers who were often her children. Furthermore, the financial impacts on the household often caused interruptions to children’s education. Discussion: This qualitative analysis demonstrates that there are many social impacts of cervical cancer, for women and others in Uganda. Challenges caused by cervical cancer such as increased financial burden, and loss of work and education often exacerbate one another. Social supports are needed to mitigate the indirect impacts of cervical cancer. Greater resources are needed to support women and their families affected by cervical cancer, and changes must address both structural and sociocultural barriers. These findings contribute evidence to support the Uganda Ministry of Health’s commitment to controlling cervical cancer, and the World Health Organization’s global initiative to eliminating cervical cancer as a public health problem.
THE SOCIAL IMPACT OF CERVICAL CANCER ON WOMEN AND CHILDREN IN UGANDA by CHUANLIN ZHOU BHSc, The University of Western Ontario, 2022 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Population and Public Health) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) April 2024 © Chuanlin Zhou, 2024 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the thesis entitled: THE SOCIAL IMPACT OF CERVICAL CANCER ON WOMEN AND CHILDREN IN UGANDA submitted by Chuanlin Zhou in partial fulfilment of the requirements for the degree of Master of Science in Population and Public Health Examining Committee: Dr. Gina Ogilvie, Professor, School of Population and Public Health, UBC Supervisor Dr. Marianne Vidler, Assistant Professor, Department of Obstetrics & Gynaecology, UBC Supervisory Committee Member Dr. Veena Sriram, Assistant Professor, School of Public Policy and Global Affairs, School of Population and Public Health, UBC Supervisory Committee Member Dr. Cheryl Peters, Assistant Professor (Partner), School of Population and Public Health, UBC; BC Centre for Disease Control; BC Cancer Additional Examiner iii Abstract Introduction: Despite being preventable, cervical cancer is the leading cancer with respect to both incidence and mortality among women in East Africa. In Uganda, the mortality rate is nearly six times the global average. There are many indirect social consequences of cervical cancer that affect patients and their families, including changes in support networks, caregiving responsibilities, and school attendance among children. Therefore, this thesis aims to describe and understand the social impacts of a cervical cancer diagnosis and treatment on women in Uganda, and her children, family, and other relationships. Methods: This qualitative analysis is part of a larger mixed-methods cross-sectional study: ASPIRE Generations. Women were recruited using stratified purposeful sampling for a demographically diverse sample. This analysis used an interpretive phenomenological approach. Data analysis followed a modified inductive approach, guided by our research objectives. Results: A total of 24 women participated in the semi-structured interviews. Analysis of the interviews generated 4 major themes: (1) disclosure and changes in relationships, (2) support, (3) loss of work and income, and (4) household impacts. While women had varying experiences, the overall impacts were negative and widespread. Women generally reported that her cervical cancer negatively affected relationships with friends and family, when she chose to disclose her diagnosis. It also had an impact on the entire household, particularly on her caregivers who were often her children. Furthermore, the financial impacts on the household often caused interruptions to children’s education. Discussion: This qualitative analysis demonstrates that there are many social impacts of cervical cancer, for women and others in Uganda. Challenges caused by cervical cancer such as increased financial burden, and loss of work and education often exacerbate one another. Social supports iv are needed to mitigate the indirect impacts of cervical cancer. Greater resources are needed to support women and their families affected by cervical cancer, and changes must address both structural and sociocultural barriers. These findings contribute evidence to support the Uganda Ministry of Health’s commitment to controlling cervical cancer, and the World Health Organization’s global initiative to eliminating cervical cancer as a public health problem. v Lay Summary Cervical cancer, despite being preventable, is the most common cancer in East Africa, with particularly high incidence and mortality rates in Uganda. In addition to the impacts to the individual patient, cervical cancer also has indirect impacts on others. Our study aimed to understand the social impact of cervical cancer on women in Uganda, and her children, family, and other relationships. We interviewed women receiving cervical cancer treatment at the Uganda Cancer Institute. We found that while their experiences varied, the impacts were negative and widespread. Cervical cancer created changes in relationships, affected different forms of support, impacted work and income for women and others, and had household impacts. This led to challenges that affected the entire family, particularly her children. This research indicates that social support is extremely important, and greater resources are needed to support women and their families affected by cervical cancer. vi Preface This thesis is based on research from the ASPIRE Generations study, conceptualized and led by primary investigators Dr. Carolyn Nakisige and Dr. Gina Ogilvie, affiliated with the Uganda Cancer Institute and the University of British Columbia, respectively. The development of the study protocol was led by Hallie Dau. Ethical approval was obtained from the Uganda Cancer Institute (UCI2022-39), the Uganda National Council of Science and Technology (HS2420ES), and the University of British Columbia Research Ethics Board (H17-02435). Guided by my supervisory committee (Dr. Gina Ogilvie, Dr. Marianne Vidler, and Dr. Veena Sriram), I conceptualized and carried out the qualitative analysis methodology and wrote each chapter of this thesis. vii Table of Contents Abstract .......................................................................................................................................... iii Lay Summary .................................................................................................................................. v Preface............................................................................................................................................ vi Table of Contents .......................................................................................................................... vii List of Tables .................................................................................................................................. ix List of Abbreviations....................................................................................................................... x Acknowledgements ........................................................................................................................ xi Dedication ..................................................................................................................................... xii CHAPTER 1: INTRODUCTION ................................................................................................... 1 1.1 Background ........................................................................................................................... 1 1.1.1 Cervical Cancer .............................................................................................................. 1 1.1.2 Cervical Cancer in LMICs ............................................................................................. 2 1.1.3 Women and Children in Uganda .................................................................................... 4 1.1.4 The Health Care System and Cancer Care in Uganda ................................................... 7 1.1.5 Beyond the Disease: The Extended Impacts of Cancer ................................................. 9 1.2 Objective and Rationale ...................................................................................................... 12 1.3 Thesis Overview ................................................................................................................. 13 CHAPTER 2: METHODS ............................................................................................................ 14 2.1 Qualitative Approach and Research Paradigm ................................................................... 14 2.1.1 Hermeneutics and Interpretive Phenomenology .......................................................... 14 2.1.2 Philosophical Assumptions and Interpretive Framework ............................................ 16 2.2 Study Population ................................................................................................................. 17 2.2.1 Inclusion Criteria ......................................................................................................... 17 2.3 Study Site ............................................................................................................................ 18 2.4 Recruitment ......................................................................................................................... 18 2.4.1 Sampling ...................................................................................................................... 19 viii 2.5 Data Collection ................................................................................................................... 20 2.6 Data Management ............................................................................................................... 20 2.7 Data Analysis ...................................................................................................................... 21 2.8 Ethical Considerations ........................................................................................................ 23 2.9 Positionality and Reflexivity............................................................................................... 23 2.9.1 Personal Reflexivity ..................................................................................................... 24 2.9.2 Interpersonal Reflexivity ............................................................................................. 26 2.9.3 Methodological Reflexivity ......................................................................................... 27 2.9.4 Contextual Reflexivity ................................................................................................. 28 CHAPTER 3: RESULTS .............................................................................................................. 29 3.1 Participant demographics .................................................................................................... 29 3.2 Study Findings .................................................................................................................... 32 3.2.1 Disclosure and Changes to Relationships .................................................................... 32 3.2.2 Support from Social Circle .......................................................................................... 40 3.2.3 Loss of Work and Income ............................................................................................ 46 3.2.4 Household Impacts....................................................................................................... 55 CHAPTER 4: DISCUSSION ........................................................................................................ 65 4.1 Summary and Interpretation of Findings ............................................................................ 65 4.2 Implications for Policy and Research ................................................................................. 70 4.3 Strengths and Limitations ................................................................................................... 75 4.4 Conclusion .......................................................................................................................... 77 References ..................................................................................................................................... 79 Appendix A: Final Coding Framework......................................................................................... 88 ix List of Tables Table 1. Participant demographics summary…………………………………………………….30 Table 2. Individual participant demographics……………………………………………………31 x List of Abbreviations ASPIRE Generations Advances in Screening and Prevention in Reproductive Cancers Gaining an understanding among mothers and children of the social and economic impacts of a cervical cancer diagnosis in Uganda ASR Age-standardized rate HICs High-income countries HPV Human papillomavirus ID Identification LGBTQ+ Lesbian, gay, bisexual, transgender, queer + LMICs Lower- and middle-income countries NCDs Non-communicable diseases SDGs Sustainable Development Goals UCI Uganda Cancer Institute UPE Universal Primary Education USE Universal Secondary Education VHTs Village health teams WHO World Health Organization xi Acknowledgements I would like to express my deepest gratitude to my entire supervisory committee for the consistent support, guidance, and kindness that they have shown me. Thank you to Dr. Gina Ogilvie for taking me on as your student and allowing me to draw from your profound expertise. Thank you to Dr. Marianne Vidler for the extra time you took to help me develop my qualitative research skills. Thank you to Dr. Veena Sriram for your many thoughtful insights and continuous encouragement. I am also extremely grateful for Hallie Dau, who has been an incredible mentor from the moment I started this master’s program. Thank you for everything, from your prompt and helpful feedback on written documents, to encouraging me to apply for various opportunities. Thank you to Prossy Aliwebwa and Irene Coker for your work on the translations of the interviews. Your efforts have allowed me to engage with and understand the data, which has been critical in this process. I would also like to thank Dr. Carolyn Nakisige, Priscilla Naguti, and Esther Nankya who welcomed me to the Uganda Cancer Institute in Kampala with so much warmth. I am very grateful for the time you took to have those collaborative discussions with me, and for the unique insights that each of you provided. I would also like to thank Maryam AboMoslim for your guidance and companionship throughout the entire experience in Uganda. Thank you to my parents for your unwavering love and support, and for cultivating my curiosity from a young age. It is without a doubt that I would not be where I am today without everything that you have done for me, and for that I am truly grateful. I would also like to thank all of my friends for the laughs, adventures, and fun that helped fuel me through this journey. Last, but certainly not least, I would like to give a special thanks to the 24 women who participated in the study and courageously shared their experiences with us. This research would not have been possible without them, and I have been truly humbled to witness their stories. xii Dedication Dedicated to the all the women who participated in the ASPIRE Generations study. It is my hope that your contributions will develop into to tangible, long-lasting impacts worldwide. 1 CHAPTER 1: INTRODUCTION 1.1 Background 1.1.1 Cervical Cancer Globally, non-communicable diseases (NCDs) have become an increasing concern and have been referred to as the largest “health and development challenge facing humankind in the twenty-first century”1. As of 2023, the World Health Organization (WHO) estimates that NCDs cause 41 million deaths each year, accounting for 74% of global deaths2. One of the most significant NCDs of concern is cancer2. However, the vast majority of the increase in the global cancer burden in the next 50 years will be from low-and middle-income countries (LMICs)3. Currently, cervical cancer is the fourth most common type of cancer and cancer-related death worldwide, with 604,000 new cases and 342,000 deaths in 20204. Cervical cancer is a type of cancer which originates in the cells of the cervix, which is the narrow lower end of the uterus that connects it to the vagina5. Despite cancer being considered an NCD, it is estimated that 99.7% of all cervical cancer cases are caused by high-risk chronic genital human papillomavirus (HPV) infection6. HPV can be spread through vaginal, anal, or oral sex, as well as close skin-to-skin contact7,8. HPV infection is very common, with an estimated 70% of sexually active people being affected at least once in their lifetime, with some being affected on multiple occasions6. Most affected individuals are not aware that they have the virus since it is often cleared by the body’s immune system within a year or two, without causing any symptoms or health problems7,8. Different types of HPV are categorized as either high-risk or low-risk for causing several types of cancer, including cervical cancer7. When high-risk HPV infections are not cleared by the body and persist for many years, they can cause cellular changes 2 that may become precancerous, and eventually cancerous if left untreated7. Specifically, 70% of cervical cancer cases worldwide are caused by two high risk types, HPV 16 and HPV 189. However, since nearly all cervical cancer is caused by HPV, it is largely preventable. Primary prevention including vaccination against HPV and secondary prevention such as screening and treating precancerous lesions can prevent most cases of cervical cancer4. Cervical cancer is also one of the most treatable forms of cancer when it is diagnosed early and properly managed; when diagnosed at later stages, it can also be effectively controlled with evidence-based treatment and palliative care4. These aspects of cervical cancer have been recognized and therefore made it an achievable target for elimination worldwide. In November 2020, the WHO launched the Cervical Cancer Elimination Initiative and introduced a global strategy to eliminate cervical cancer as a public health problem10,11. The strategy proposed 90-70-90 targets for 2030 whereby 90% of girls are fully vaccinated against HPV, 70% of women are screened using a high performance test by age 35 and again by age 45, and 90% of identified women with cervical disease (precancer or invasive cancer) receive treatment11. This marks the first time that the world has committed to eliminating a cancer and impact modelling has shown that it is possible to eliminate cervical cancer globally within the next century11. Successful implementation of the WHO strategy over the next century is estimated to avert 99% of cervical cancer deaths, saving the lives of over 62 million women12. However, a major barrier to elimination are the large global disparities in disease burden, access to HPV vaccination and screening10. 1.1.2 Cervical Cancer in LMICs “Few diseases reflect global inequities as much as cancer of the cervix”; the WHO’s global strategy to eliminate cervical cancer acknowledges the substantial global disparity with respect to the cervical cancer disease burden11. Of the 342,000 deaths caused by cervical cancer 3 in 2020, 90% of these occurred in LMICs4. The cervical cancer incidence rate is twice as high, and the mortality rate is three times as high in LMICs as compared to high-income countries (HICs)11. These inequities in the cervical cancer burden are predominately driven by inequalities in access to vaccination, screening, and treatment services, as well as social and economic determinants of health including sex, gender, and poverty10. For instance, in HICs, 84% of women ages 30-49 have been screened for cervical cancer in their lifetime, compared to only 9-11% of their counterparts in LMIC10. Cervical HPV is highest in Sub-Saharan Africa with a prevalence of 24%13. Subsequently, this region experiences one of the highest rates of cervical cancer incidence and mortality across the globe4. In East Africa, cervical cancer was the leading cancer in terms of incidence and mortality in 202014. This is a particularly challenging issue for Uganda, where the age-standardized rate (ASR) incidence of cervical cancer is over four times that of the global estimate with a rate of 56.2 per 100,000 in 202015,16. Furthermore, the cervical cancer mortality ASR in Uganda was nearly six times the global rate, at 41.4 per 100,000 in 202016. For comparison in 2020, the global cervical cancer incidence ASR was 13.3 per 100,000, and mortality was 7.2 per 100,00012. To address the global cervical cancer burden, HPV vaccination has been a major focus and has primarily targeted girls aged 9 to 14, with secondary targets being boys and older females17. In Uganda, HPV vaccination has been routinely recommended since 2008 for pre-adolescent and adolescent girls to prevent cervical cancer18. In 2015, as part of the strategic plan for cervical cancer prevention, the HPV vaccine was rolled out national and the Uganda Ministry of Health committed to 80% coverage among eligible girls19. Despite this, a 2020 study using secondary data from the 2016 Uganda Demographic and Health Survey found that 78% of girls 4 ages 10 to 14 had not been vaccinated19. HPV vaccination uptake remains low in Uganda and has been attributed to both individual- and community-level factors, such as school attendance status and socioeconomic disadvantages19. Cervical cancer screening is a critical prevention measure in the goal of eliminating cervical cancer. The WHO recommends the general population of women be screened for cervical cancer every 5 to 10 years starting at age 30, and women with HIV be screened every 3 years starting at age 254. Part of Uganda’s national strategy for cervical cancer prevention and control is also to have 80% of women aged 25 to 49 years screened and treated for cervical precancerous lesions, however these targets have also not been met20. The baseline lifetime screening rate for cervical cancer also remains low, reported to be between 4.8% to 30%21,22. Various barriers at the individual- and community level that have been identified as impeding uptake of screening and treatment included poor knowledge, stigma, and limited resources/infrastructure20. 1.1.3 Women and Children in Uganda Cervical cancer is a disease that only affects those with a cervix. In Uganda, gender diversity is not recognized in the legal policy framework and passed a bill criminalizing those who identify as lesbian, gay, bisexual, transgender, queer +, (LGBTQ+)23,24. Thus, in the Ugandan context, we will assume that cervical cancer exclusively affects those who identify as women. Cervical cancer in Uganda most commonly occurs in women between 30 and 49 years of age25. Reproductive age in women is globally defined as those between 15 to 49 years of age, while the working-age population in Uganda is defined as the population between 14 to 64 years of age26,27. This means that many women afflicted with cervical cancer in Uganda are of both 5 working age and reproductive age; consequently, cervical cancer will also affect aspects related to these dimensions of a woman’s life. One of the Sustainable Development Goals (SDGs) is achieving gender equality28. The Global Gender Gap report by the World Economic Forum, which uses a scale of 0 to 1 whereby 1.0 represents complete gender parity, indicates that Uganda has been improving on this goal, attaining a score of 0.724 in 202229. The same report indicates that Uganda scored 0.696 on the economic opportunity and participation subindex, and has a labour force participation rate of 90% which measures the proportion of the country’s working-age female population that actively engages in the labour market29. The Ugandan labour force participant rate composition was 39% female in 202127. This indicates that women are a significant and integral part of the workforce, as well as significant contributors to their household’s income. However, it is also important to recognize the unpaid work that is done, often largely by women. In Uganda, unpaid work can be largely categorized as subsistence agricultural work (farming, fishing, forestry, for home consumption), other unpaid work (e.g., handicrafts, brick-making for home use), and unpaid caregiving work27. Globally, men were shown to spend 19% on unpaid work of their total time spent working, compared to women’s 55%; unpaid care work was an area with a significant gender gap29. In Uganda, women were found to spend 5.5 hours per day doing unpaid care work and 5.3 hours a day doing paid work, compared to men’s 3.5 hours and 7.4 hours per day, respectively30. Uganda also has a high fertility rate with an average of 4.6 births per woman in 2021 as reported by the World Bank31. This means that many women are mothers and are providing care for multiple children. However, care recipients are not limited to women’s own biological children. Women also often provide care in the household to grandchildren, nieces, nephews, 6 great-grandchildren, as well as non-relative children such as children of friends or neighbours32. Despite women bearing the greater proportion of the domestic and childcare labour, intrahousehold decision making often lies with fathers; fathers generally have more decision-making power than mothers, despite mothers being more concerned with children’s well-being33. An important component of children’s well-being concerns education, and mothers of school age children were overwhelmingly in support of investing in children’s education, as compared to investing in land for farming34. However in 2021, only 24% of children aged 5 to 17 in Uganda were found to be exclusively in school, 67% were working, and 6% were neither working nor in school27. Inclusive and equitable access to quality education is another one of the SDGs, and aims to have all children completing primary and secondary schooling by 203028. The importance of education is recognized as it supports upward social mobility, reduces inequality and gender inequality, helps people escape poverty, and supports the other 17 SDGs aimed at promoting peace and prosperity across the globe28,35. In Uganda, children can attend both primary and secondary education for free. Uganda was one of the first countries in Sub-Saharan Africa to introduce Universal Primary Education (UPE) and Universal Secondary Education (USE) programs which were implemented in 1997 and 2007, respectively36. However, despite the implementation of UPE and USE, many children are still not completing primary and secondary schooling. It was estimated that 68% of children who enrolled in UPE drop out before completing all seven years, and only 22% of children between the ages of 13 to 18 were enrolled in secondary school36,37. Despite education being offered for free, costs still remain a major barrier. Parents are still required to buy education materials such as pens and notebooks, uniforms, and lunches for their children37. Wealthier parents send their children to private 7 schools as the quality of education has been another major issue at public schools; thus, this creates an educational gap between children whose parents can and cannot afford private education37. Furthermore, if the quality of the education is poor, families may choose to employ children at home instead of sending them to school38. For these reasons, equitable access to quality education remains an issue affecting children in Uganda. 1.1.4 The Health Care System and Cancer Care in Uganda The vastly unequal global burden of cervical cancer worldwide has largely been attributed to unequal access to health care among countries which have varying health system structures. Health services in Uganda are delivered through both the public and private sectors39. In the country, 45.16% of health facilities are government-owned, 40.29% are private for-profit facilities, and 12.44% are private and not-or-profit, and 0.10% are community-owned facilities40. Health care services in Uganda are funded using a combination of out-of-pocket payments, general tax revenue, and donor funding39. User fees for health services in public were eliminated in 2001, however the proportion of the total domestic health expenditure has increasingly consisted of out-of-pocket payments; conversely, contributions from government taxes have been low and decreasing39. In Uganda, the health system is organized at the national and district-based levels, and the health facilities are designated as one of seven levels depending on services they provide and catchment areas they serve40,41. At the national level, the most comprehensive range of services is offered by national referral hospitals, of which there are four, followed by 17 regional referral hospitals, and 62 general hospitals40,41. District-based health centres are classified into four levels (HC-I to HC-IV), with HC-IVs offering the widest ranges of services at the district level, while HC-Is function to link the community to the health system41. HC-Is involve village health teams 8 (VHTs) and health volunteers who may or may not have formal training, who refer patients to higher-level health centres depending on their needs41,42. The health care system in Uganda is a decentralized referral system with a tiered structure, and VHTs are often patient’s first point of contact with the health system42,43. VHTs play an integral role in raising awareness and mobilizing community members to participate in cervical cancer screening and other prevention initiatives44. In low-income countries where there is a scarcity of health care resources, community-based approaches that link people to existing health care services has been touted as an effective and efficient mode of delivery43. In Uganda, VHTs are community-based generalists, selected by those in the community, and report to government structures such as formal health care service professionals43. This model follows the decentralized, tiered continuum whereby lower level health facilities are spread across more rural communities; higher level facilities are mostly found in urban centres with all four national referral hospitals being located in Kampala, the country’s capital city42. Despite the estimates that 75% of people in Uganda live within 5 kilometres of a health facility, access to formal healthcare remains a challenge, exemplified by estimates that less than half (44.4%) of expectant mothers deliver at hospitals, and even fewer pregnant women (32.4%) attend all four recommended antenatal visits42,43. Accessibility to health care are caused by both supply and demand dimensions of the health care delivery system43. These problems with access to health care also translate to cancer care, with additional unique challenges. Within the health system, there are five specialized hospitals, with one of them being the Uganda Cancer Institute (UCI)40. The UCI is also located in Kampala, and is the only comprehensive cancer treatment centre in the country45. The UCI is a public facility and offers 9 cancer services including prevention and early detection, diagnosis, treatment, and palliative care45,46. Cancer care at the UCI is mostly offered for free including screening, diagnosis, oncology consultations, surgery and all available cancer medications45. Despite most cancer services being offered for free, many patients are never referred, and never seek treatment due to socio-economic and structural barriers45. With respect to cervical cancer care in Uganda, these system-level challenges are present within both treatment and prevention initiatives. For those who do seek help, many patients not identified through screening were found to self-refer to the hospital only when they experienced alarming symptoms47. Screening in the country has been described as erratic and opportunistic, or even absent due to a lack of resources22. The UCI receives about 6000 cervical cancer cases each year, and 80% of women who are referred to the UCI with cervical cancer have a disease that is stage III or higher22. Many cervical cancer patients in LMICs were found to seek care later, and consequently experience fewer benefits of treatment, and have poor survival47. 1.1.5 Beyond the Disease: The Extended Impacts of Cancer In addition to the devastating physical impacts of the disease, cancer may also have many other types of consequences including psychological, economic, and social. Significant outcomes of interest that have guided psycho-oncology research have been categorized as 1) survival, and 2) quality of life, the latter of which is said to include physical, psychological, social, vocational and sexual impacts48,49. Several models have been postulated regarding how cancer induces psychosocial impacts where the outcome of interest is ultimately quality of life, although this is often not well defined48. Costa et al have proposed that cancer and cancer treatment have effects on psychological and social outcomes which are mediated by characteristics of the individual (e.g., personality, demographics), as well as the environment (e.g., medical care and social 10 support)48. Social impacts of cancer diagnosis and treatment are often compiled under terms such as “well-being” or “social functioning”, examining issues such as social isolation, relationship problems, and separation from family48. In a systematic review of patient-reported outcome measures of impacts of cancer on their everyday lives, Catt et al found many reports of financial distress, concerns about cancer affecting their role in caring for dependents, and intrusions on their social life50. Where patients reported financial distress, they described various strategies employed to cope with the cancer-related financial burden including financial reductions in other areas, borrowing money, using credit, and defaulting on bills50. These financial burdens are also often related to indirect costs such as loss of work and have been examined on a societal level using concepts such as absenteeism (concerning decreased time at work) and presenteeism (concerning declined productivity due to decreased work efficiency)51. At the patient-level, their work situation has been described as a significant source of crisis for themselves and their family52. Cancer patients with dependent children were found to have concerns about how their cancer affects their parental role in terms of practical and emotional consequences for their children50,53. The family is therefore also impacted by way of both a reduction in household income, as well as relationally. The impacts of cancer are also not limited to the patients themselves. In addition to impacts to the family, the extensive impacts on those who take on caregiving roles have been shown. Caregivers are burdened with important roles and responsibilities despite having little to no formal training, with cancer caregivers reporting particularly high levels of burden; this ultimately leads to lower quality of life for themselves and the person they provide care for54. Physical impacts of cancer caregiving to be associated with increased blood pressure, nervous 11 system dysregulation, immune changes, and poor health-related behaviours55. Beyond the physical impacts, the burden of cancer caregiving has been classified as emotional burden, psychological burden, and relationship with the patient56. There is also currently limited information on specific impacts of caregiving for patients with cervical cancer which may include unique challenges. For example, the altered sexual relationship, including unmet sexual needs and reproductive concerns, was significant to the caregiving experience of male partners57. These aforementioned studies and psychosocial outcomes were largely situated in HICs, and due to the varying socioeconomic contexts, it is also imperative to further examine this in the LMIC context. Many of these challenges have been described in LMICs with additional unique considerations in resource-limited settings. Health is closely related to financial hardship, and is a particular concern in LMICs where poverty can both cause and be a result of inaccessibility to healthcare58. In LMICs, cervical cancer has identified impacts on social support, education, and independence, employment and financial security59. A study by Endale et al examining the socioeconomic impact of cervical cancer in Ethiopia found several economic impacts at the patient level, including loss of income, work and employment challenges, and financial distress caused by both medical and non-medical expenditures60. Additionally, sexual outcomes have also been described as a class of social outcomes48. This is particularly relevant to a cancer such as cervical cancer which affects the reproductive system. Endale et al also found the following social impacts related to cervical cancer: social discrimination, loss of body image, loss of sexual functioning, and loss of femininity60. Cervical cancer survivors reported more dyspareunia (painful sexual intercourse), which was worse in terms of frequency and duration following radiotherapy61. These impacts have not been thoroughly investigated, particularly in the Ugandan context. 12 1.2 Objective and Rationale The objective of this thesis is to describe and understand the social impacts of a woman’s cervical cancer diagnosis and treatment on herself, as well as her children, family, and other relationships. For the purposes of this analysis, “social” impacts may include any non-physical, non-medical impacts of the disease which may be psychosocial and/or socioeconomic. This is important to understand because cervical cancer is a significant issue, globally, and particularly in Uganda. Furthermore, the WHO constitution recognizes that “health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”62. While cervical cancer has clear and known consequences to one’s physical health, it is also important to attend to the social dimensions of the disease to provide a holistic understanding of the health impacts in order to provide truly comprehensive care. The current body of research indicates that there are many serious indirect consequences of cervical cancer affecting patients themselves, as well as others including her family members. Previous research in LMICs has revealed social impacts including changes in support networks, caregiving responsibilities, and school attendance among children59. Additionally, for patients with advanced cancer in Uganda, children were found to be significant family caregivers who as a group also faced physical, psychological, and social challenges63. However, despite much of the disease burden being situated in LMICs, there is still very limited information on how cervical cancer impacts women and their children in these countries. The cancer experience can vary greatly in different places due to the cultural and structural context, therefore research in HICs does not necessarily translate to LMICs, warranting specific examination in LMICs. The cancer experience is unique to each individual. There is complexity and variation in both the cancer and one’s psychological response to it, impacted by social support and functioning48. 13 Individuals undergoing similar physical situations with their cancer journey may experience it differently, thus creating different impacts. Therefore, it is important to explore the varying experiences to gain an in-depth understanding of the phenomena in the given context. For this objective of understanding subjective experiences of health and disease, qualitative methodologies are particularly appropriate for developing knowledge in poorly understood or complex topics64. It has also been found that studies that used quantitative methods typically found more positive results than studies using qualitative methods59. Therefore, it is important to further investigate using qualitative methods to illuminate potential negative impacts that may not otherwise be sufficiently captured using quantitative methods. 1.3 Thesis Overview This thesis is comprised of four chapters. The first chapter provides background information on existing research related to the thesis objective, that is understanding the social impact of cervical cancer on women and their children in Uganda. The second chapter delineates the philosophical approach framing the analysis as well as the methodological approach to the research. The third chapter presents the data collected from this study, illuminating the results of this inquiry. The fourth and final chapter is a discussion of the results whereby findings are interpreted, and conclusions are drawn. 14 CHAPTER 2: METHODS This study utilizes qualitative data collected as part of a larger cross-sectional, mixed-methods study: Advances in Screening and Prevention in Reproductive Cancers (ASPIRE) Gaining an understanding among mothers and children of the social and economic impacts of a cervical cancer diagnosis in Uganda (Generations). This study is a qualitative analysis of the interview data collected from this larger mixed-methods study. 2.1 Qualitative Approach and Research Paradigm This study utilizes a qualitative research design and employs an interpretive phenomenological approach to explore the research questions65. A qualitative research design is appropriate because we seek to gain a complex, in-depth understanding of the broad impacts of a woman’s cervical cancer treatment. Qualitative methods can be used to answer questions about experience, meaning, and perspective from participants’ point of view66. While quantitative methods are appropriate to answer research questions that are known and unambiguous and variables can be isolated and defined, qualitative methods can be used to address questions whose answers are not amenable to being numerically measured66. The nature of the research question largely grapples with understanding people’s experience with a particular shared phenomenon, which cannot be sufficiently answered solely using quantitative methods. Qualitative methodology is therefore integral to gaining a thorough, nuanced understanding of the social impacts that cervical cancer has on women and their children in Uganda. 2.1.1 Hermeneutics and Interpretive Phenomenology Phenomenology is a philosophical and methodological approach whose purpose is to generate an account of lived experiences in their own terms67. Phenomenology is well-suited to 15 the research question and objectives because we wish to describe and understand participants’ experiences with how cervical cancer has impacted their children, families, and social relationships. The two main types of phenomenology are generally categorized as either descriptive or interpretive68. Descriptive phenomenology focuses on the relationship between the experience and how it is experienced; the job is complete once these have been identified68. Interpretive phenomenology, also known as hermeneutic phenomenology, emphasizes participants’ individual lived experiences and focuses on understanding the meaning of these experiences68,69. Hermeneutics has been referred to as “the philosophy of interpretation” can be used to augment phenomenological methodology68,70. Interpretive phenomenology differs from descriptive phenomenology in that it goes beyond identifying the phenomena/experience and how it is experienced, to also interpret the meanings that arise as they relate to the phenomena. Another key difference between descriptive and interpretive phenomenology is the practice of bracketing that is commonly done in descriptive phenomenology, whereby investigators put aside their own experiences to reach the essence of a given phenomenon65,68. Descriptive phenomenology, also known as transcendental phenomenology, is aptly named as an observer may transcend the phenomena of interest, using more generic descriptions to take a broader view of the essences of the experiences that are uncovered68. These processes essentially work to objectify the meanings of human experiences68. However, Martin Heidegger, the philosopher credited with developing interpretive phenomenology, contended that it is not possible to detach our own experiences to remain neutral when identifying the essence of a phenomenon68. 16 By qualitatively investigating how participants are socially impacted by cervical cancer with the goal of describing and understanding their experiences, we are interpreting their accounts about their lived experience. Therefore, the goal is not to ‘transcend’ the phenomena experienced but rather to closely examine the experiences shared by the participants. In interpretive phenomenology, the researcher functions to make sense of the participant making sense of what is happening to them67. In other words, the researcher is interpreting participants’ interpretations of their own experience; this does not lend itself to be generalized or objectified. Rather, an interpretive phenomenological approach will allow for a detailed exploration of accounts of personal lived experiences to facilitate an in-depth understanding of the social impacts of cervical cancer, as they are experienced by the participants, which is pertinent to the central research question. 2.1.2 Philosophical Assumptions and Interpretive Framework In the process of conducting qualitative research, there are philosophical assumptions that are embedded within our practices. These philosophical assumptions employed within an interpretive framework, which are a set of beliefs that orient the research process. Interpretive phenomenology is guided by fundamental ontological considerations and described within a constructivist framework69,70. The ontological assumption deals with the nature of reality and is characterized by the idea that reality is comprehended through multiple views65. Heidegger’s interpretive phenomenology takes an ontological approach to understanding which is believed to be achieved through “being in the world”; these philosophical assumptions firmly establish this methodological approach within the constructivist paradigm71.The constructivism framework is a philosophical paradigm largely associated with qualitative research and asserts that reality is 17 subjective since it is expressed from individual participants’ perspectives72. In social constructivism, it is posited that individuals develop subjective meanings through their lived experiences and interactions in the world, thereby constructing multiple realities65. In contrast to a positivist or post-positivist paradigm which assume a singular reality exists, a constructivist paradigm which assumes multiple realities exist deals with the meanings that individuals give their lived experiences65,69. Interpretive phenomenology requires the researcher to “seek for understanding of the meaning of Being, rather than for what can be known”, in order to dive deeper beyond the surface73. By attempting to understand individuals’ experiences whereby we interpret their interpretations of what is happening to them, the nature of multiple realities must be acknowledged. Heidegger assumes that these multiple realities cannot be fully known, but that knowledge is generation is co-constructed71. With interpretive phenomenology, researchers and participants are regarded as co-creators of meaning, and therefore knowledge69,71. 2.2 Study Population The study population is comprised of women with a cervical cancer diagnosis (confirmed by histology) who were receiving treatment at the UCI in Kampala, between September 19th, 2022 and January 17th, 2023. 2.2.1 Inclusion Criteria An individual was eligible for the study if they: i) were being treated for cervical cancer at the UCI in Kampala, ii) were 18 years of age or older, iii) could speak English, Luganda, Lusoga, Luo, or Runyankole and iv) could provide informed consent (in the form of a signature or thumbprint). 18 2.3 Study Site This study was conducted at the Uganda Cancer Institute in Kampala, which is the primary cancer treatment center in Uganda22. The UCI treats over 800 patients with cervical cancer each year74. Patients are generally diagnosed and treated in outpatient gynecology clinics at the UCI22. Our research team at The University of British Columbia and the Women’s Health Research Institute in Vancouver, Canada has a longstanding, collaborative working relationship with the team at the UCI, and the head of the department of obstetrics and gynecology at UCI is the chief liaison between our teams. The team members at UCI are the local experts who drive the need for answers to our research questions, and are instrumental in the research process particularly with respect to participant recruitment, data collection, and local contextual expertise. 2.4 Recruitment Recruitment took place at the aforementioned study site, the UCI in Kampala. Women who were eligible for the ASPIRE Generations study were notified about the study during clinic registration. Those who were interested in participating could then choose to meet in private with the lead data collector who provided them with the recruitment information document in their preferred language (English, Luganda, Lusoga, Luo, or Runyankole). Should they choose to proceed, they were given a consent form in their preferred language. For those with low literacy, all documents could be verbally read to them in their preferred language. They were given as much time as needed (within the recruitment period) to decide whether or not to participate and were be given the contact information of the study coordinator whom they may contact, should 19 they choose to participate after the initial meeting. For this qualitative study, women were recruited from the sample of participants who had participated in the quantitative survey. 2.4.1 Sampling Qualitative interview participants were recruited following their participation in the quantitative survey portion. We aimed to recruit 10-20 participants for the qualitative portion of the study; we were able to exceed this, recruiting a total of 24 women. Sample size was determined using information power, which posits that “the more information the sample holds, relevant for the actual study, the lower number of participants is needed”75. With respect to participants’ lived experiences, they hold a great amount of information relevant to the study, as they are the ones living through the experience of having been diagnosed with cervical cancer and witnessing the subsequent social impacts first-hand. The goal was to recruit a sample sufficient in both size and variation to explore the social impacts of cervical cancer on women and their children in Uganda. Stratified purposeful sampling was employed to recruit women who met the inclusion criteria, with varying demographic profiles. This technique enabled us to capture potential major variations while also allowing for identification of common experiences76. The purpose was not to obtain generalizability, but rather to hear diverse perspectives and experiences. Therefore, we recruited a demographically diverse sample that included women of different ages, cancer stages, and locations (urban and rural). This resulted in a varied group of participants who all have had the lived experience of the phenomenon of interest, that is cervical cancer. This supports the point that exploring a phenomenon requires data with appropriate variation in some qualities75. 20 2.5 Data Collection The quantitative survey, which included questions about demographic information, was orally administered by trained UCI research nurses. These nurses also conducted the qualitative interviews. Participants could choose to complete the survey and interview in their preferred language (English, Luganda, Lusoga, Luo, or Runyankole). Both the surveys and interviews were conducted in-person, one-on-one, in a private space. Demographic data collected in the survey included information about women’s age, home district, occupation, religion, marital status, number of adults and children in the household, level of education, and stage of cancer. The qualitative interviews followed an in-depth semi-structured format. The semi-structured interview format is exploratory in nature and enables researchers to delve deeper for discovery77. While researchers using this format prepare specific topics they want to explore in advance, this approach is also flexible and allows new questions to be explored based on what interviewees have said via follow-up questions and probes77. Participants were therefore asked three open-ended questions about their experiences of how cervical cancer has impacted their children, partner, and friends, as well as their relationships with these people. Each interview was recorded on two digital recording devices and lasted up to 15 minutes. 2.6 Data Management Upon study enrolment, each participant was assigned a participant identification (ID) code which was used to label all their study documents and data including consent forms, interview recordings, and digital transcripts. A single digital file containing participant IDs and their identifying information (name and birthdate) is triple password protected and is only available to approved research team members. Digital files of the interview recordings were 21 labeled using only the participant ID. All digital files were saved on a secure database, accessible only to approved study team members. Any hard copy documents (consent forms) were saved in a locked file cabinet, in the research coordinator’s office on-site at the UCI. Digital files and hard copies of documents and data will be destroyed 5 years after the study is completed. 2.7 Data Analysis All interviews conducted in a language other than English were transcribed verbatim in the language in which it was conducted, then translated to English by a professional Ugandan transcriptionist. The English transcripts were then checked for accuracy by a Ugandan research assistant fluent in all study languages to ensure fidelity of the translation and original meanings expressed by participants. While the various language options may present challenges, such as when there is no direct translation of certain words or phrases, this option allowed more participants to be eligible for the study. This in turn helps promote diverse sample with potential for varying perspectives. Data analysis followed a modified inductive approach, guided by our research objectives. Analysis began once data collection was finished and all interviews had been translated, allowing for in-depth immersion into the data. Nvivo 12 software was utilized for the coding process78. The primary coder, who in this case is the author, started by reading all transcripts line-by-line to generate initial codes and identify significant statements. The emergent codes were then organized to create a preliminary codebook. This preliminary codebook was reviewed with the UCI team members to elicit feedback and ensure contextual appropriateness. The codebook was an iterative document; codes were added through the process to be able to identify more nuances in participants’ accounts of their experiences. 22 Once the final coding framework was finalized (Appendix A), it was applied to all transcripts. A member of the Canadian research team with extensive qualitative methodological and area expertise acted as a secondary coder to apply the coding framework to 4 transcripts. Both coders then met to discuss consistency of the application of the codebook to the transcripts. Involvement of UCI team members and a secondary coder throughout the analysis process acted as forms of investigator triangulation to enhance rigor and reliability79. Member checking is a technique whereby results are brought back to participants to assess the accuracy of results in relation to participants’ experiences; this technique is used to validate the trustworthiness of qualitative results80. In this study, it was not feasible nor appropriate to bring original participants back for this step. Therefore, we conducted an adapted member checking step with UCI research team members including the on-site primary investigator, lead data collector, and local research coordinator. Preliminary findings were shared with UCI team members and in-depth conversations centered around line-by-line reading of 4 selected transcripts. Feedback was solicited regarding about how the codes were applied, cultural and contextual nuances, as well as interpretations of the interview data. This was incorporated into the rest of the analysis and report. Collaborative discussions from the adapted member checking step also contributed to the development of sub-themes and major themes. Thematic analysis was used as an interpretive strategy to help synthesize meaning of the women’s experiences81. The coding framework was examined to identify the most significant aspects of women’s experiences to create over-arching themes; this was an iterative process. The inductive approach centered within hermeneutic phenomenology allows researchers to explore ontological possibilities, however it is important to note that it is not free of researcher’s own presuppositions81. The themes are ultimately the result 23 of the researchers’ interpretations of the participant’s own interpretations of their experiences; this serves to make sense of, and gain an in-depth understanding of the phenomena of interest. 2.8 Ethical Considerations Study participants were informed that their participation was voluntary, and that it would not impact their ability to access or the quality of the care they receive at the UCI. The various languages (English, Lusoga, Luo, Runyankore, Luganda) and modalities (written vs verbal communication) in which the study information was offered supports that the consent obtained is well-informed. Interested participants were read the recruitment script in a private space and could ask further questions to the lead data collector. Participants were compensated for their time with 30,000 UGX (approximately $11 CAD) and also offered a snack after completing the study. Confidentiality was maintained by the use of participant ID codes, and by removing any identifying information from the transcripts. Ethics approval was obtained from the University of British Columbia Research Ethics Board (H17-02435), the Uganda Cancer Institute (UCI2022-39), and the Uganda National Council of Science and Technology (HS2420ES). 2.9 Positionality and Reflexivity Reflexivity is a continuous process by which researchers assess how their context and own subjectivity influence the research process82. The researcher is a key instrument in qualitative research and in hermeneutical phenomenology in particular, the researcher is also making interpretations on the meaning of the participants’ lived experiences9. It is therefore important to recognize the role of the researcher in the interpretive process. There are several different approaches with respect to the goal of engaging in reflexivity which include acknowledging researcher subjectivity, neutralizing it, explaining it, and 24 capitalizing on it82. Contemporary qualitative researchers consider subjectivity an integral component of the data generation process, and posit that not only can it not be removed but that efforts to do so are damaging82. With this approach, reflexivity thus aims to capitalize on this subjectivity, and has been argued to enhance reflexive practices in any qualitative methodologies82. Different types of reflexivity have also been proposed by qualitative methodologists. Walsh presents four interrelated dimensions of the reflexive process including personal, interpersonal, methodological, and contextual reflexivity83. Personal reflexivity concerns researcher’s expectations, assumptions, and reactions82. Interpersonal reflexivity relates to the influence of relationships in the research process82. Methodological reflexivity considers impacts of methodological decisions82. Contextual reflexivity deals with the setting of the research and its influences82. This approach encompasses several areas in which subjectivity can contribute to knowledge co-creation and will act as a guide for this reflexive process. 2.9.1 Personal Reflexivity I, the author, am conducting this research as part of my Master of Science program in the School of Population and Public Health at the University of British Columbia. My educational background is in health sciences, and I have accumulated experience designing qualitative interview guides, conducting qualitative interviews, and analyzing qualitative data. My educational experiences have galvanized my passion for health equity on a global scale, but I had not worked in this field prior to undertaking this study. I have also come to conceptualize ‘health’ as being much more than physical well-being; I believe that physical health is profoundly related to one’s mental, and social well-being, and am interested in how these dimensions relate to one 25 another. My focus on this broader definition of health has primed my curiosity for understanding the broader impacts of a disease, such as cervical cancer. Since I began working on this study, I have been aware of my positionality as a Canadian researcher without lived experience in Uganda or with cervical cancer, and how this might influence the research process. This awareness has prompted me to consciously think about how my perspectives, shaped by my own experiences, might affect how I approach this topic and interpret the data. This has also inspired my efforts to reconcile the strengths between my position as an ‘outsider’ with the strengths of team members with greater contextual knowledge of the subject matter and setting. Throughout the research process, particularly during the analysis phase, I recognized that there were many nuances in the data that I could be missing. There were many times where I felt disconnected from the subject matter due to my lack of lived experiences with cervical cancer and in Uganda, and I wished to be ‘closer’ to the research. In the midst of the analysis process, I had the privilege to travel to Kampala, visit the research site, and work first-hand with our local team members. This experience gave me further insight into the culture and setting, yet I am consciously aware that this by no means makes me an insider. Rather, I have taken this as an opportunity to learn from and collaborate more closely with the UCI team, and fortify my abilities to conduct this research. In addition to reflecting on how my positionality might impact this research, I have also reflected on how engaging in this research has impacted me. I have deepened my existing passions for holistically improving health at a population level, and gained a newfound awareness about the subject matter and unique challenges in the Ugandan context. Most importantly, recognizing my positionality has reinforced my desire to highlight and empower 26 participants’ voices. Reading though participant’s accounts of their experiences with, and the impacts of their cervical cancer has left me feeling heavy-hearted. I am deeply humbled to be entrusted with this work, and I feel a deep sense of responsibility to do right by those who have shared their stories with our research team. 2.9.2 Interpersonal Reflexivity As a student researcher joining this study as part of my educational journey, I have approached this collaboration with a great sense of honour and humility. Our Canadian research team has had a longstanding working relationship with our collaborators in Uganda who are the drivers of this work. Being a new member of the research team, I felt that it was important to continue to foster this established partnership, although much of that was done virtually until I was able to meet UCI team members in-person. I felt that it was important to convey my commitment and passion for this work. I thought about how these interactions might impact the research process and recognized that building trust would help enhance the working relationship with respect to this study, and beyond. This was important because I drew on their local expertise throughout the research process, and I believe that a strong working relationship helped ameliorate the collaborative components, particularly with respect to analysis and interpretation. A significant interpersonal relationship is that between participant and researcher. Data collection was conducted by the UCI research nurses, who may be considered insiders, as they work with patients, some of whom were participants in this this study. The dynamics of this relationship may have impacted the research in various ways. Having a local professional who is relatively familiar (compared to a Canadian research team member), may have facilitated the development of rapport and trust, which would have helped participants feel more comfortable to speak freely about their experiences. Power dynamics between participant and researcher may 27 differ depending on individual perspectives. A sense of authority may be associated with health care providers, and it is possible that participants tailored their responses due to this dynamic. Additionally, due to the nature of this study in which we are dealing with highly sensitive and personal information, it may still have been difficult for some participants to fully disclose any negative feelings and experiences. 2.9.3 Methodological Reflexivity Methodological reflexivity helps us understand the goals of this research and therefore guided decisions during knowledge generation, helping to align the process with the paradigm and approach. An example is this very methodological decision to engage with reflexivity. This study is framed within a constructivist paradigm and employs hermeneutic phenomenology to interpret and understand participants’ experiences of social impacts related to their cervical cancer diagnosis. Other phenomenological approaches namely transcendental phenomenology, attempts to neutralize researcher subjectivity using practices such as bracketing to study the phenomenon from an objective distance82. This practice of reflexivity is described as the antithesis to a practice such as bracketing out influences on the phenomena since the goal is to see it as ‘the things themselves’68. However, the interpretive framework we are using takes on the perspective that reality is subjective and multiple in nature; knowledge is regarded to be co-constructed by participants and researchers. Therefore, the goal of this study is not to present an objective description of the phenomena that is free from outside influences, as this does not align with the overarching qualitative approach. Approaching the research process acknowledging that both participants and researchers play roles in constructing knowledge allows for the focus to be on exploring participant’s experiences with the phenomenon. 28 2.9.4 Contextual Reflexivity This study was conducted at the UCI in Kampala, Uganda. The context of the Ugandan health care system is also important to consider. The UCI is a public hospital in an urban setting, which sees patients from across the country for cervical cancer treatment. Considered a resource-limited setting, cancer patients in Uganda face unique challenges which can be attributed to individuals’ low socioeconomic status, inadequate cancer care infrastructure, and health care system inefficiencies45. Situating participants’ experiences in this context is important because this in turn also influences how they experience, and interpret their experience, with cervical cancer. Conversely, it is also important to reflect on how the research impacts the context. The work is driven by our collaborators at the UCI who witness first-hand, the needs of the community. Discussions with our local collaborators about the Ugandan health care context in relation to cervical cancer have highlighted the need for greater resources, and changes beyond the individual or even institutional level. In conducting this research, the evidence that is co-created will be utilized to propel widespread positive changes to the context by way of informing practices and policies related to cervical cancer support. 29 CHAPTER 3: RESULTS 3.1 Participant demographics A total of 24 women participated in the semi-structured qualitative interviews between September 19th, 2022, and January 17th, 2023. We were able to recruit a sample of participants with varying demographic characters which represents some, but not all, women’s experiences with the social impacts of cervical cancer in Uganda. The summary demographics are displayed in Table 1, and the individual participant demographics are displayed in Table 2. Participants ranged between 29 and 68 years of age, with a median of 51.5 years. Most participants completed the interview in Luganda (91.7%). Participants reported being from a variety of districts, with the majority (58.3%) being from a district other than Kampala or Wakiso/Mukono (the two closest districts to Kampala). Participants also reported various occupations, with the most common being small plot farmer (25.0%) or professional/businessperson (29.2%). The majority of participants had a primary-level education (41.7%) or less (12.5%). Participants also reported being at various stages of cervical cancer, with stage II being the most frequently reported stage (41.7%). 30 N % Age (years) Median (range) 51.5 29-68 Interview Language English 1 4.17 Luganda 22 91.67 Runyankole (Rutooro)* 1 4.17 District Kampala 2 8.33 Wakiso/Mukono 8 33.33 Other 14 58.33 Occupation Small plot farmer 6 25.00 Commercial farmer 2 8.33 Professional/businessperson 7 29.17 Shopkeeper 1 4.17 Housewife 1 4.17 Retired 1 4.17 Not employed but looking 4 16.67 Unable to work 2 8.33 Religion Catholic 7 29.17 Anglican 9 37.50 Other Christian 3 12.50 Muslim 5 20.83 Marital Status Single 4 16.67 Married 9 37.50 Separated/Divorced 3 12.50 Widowed 8 33.33 Number of Household Adults Median (range) 3 1-7 Number of Household Children Median (range) 2 0-6 Level of Education Less than primary 3 12.50 Primary (P1-P7) 10 41.67 O-level (S1-S4)a 9 37.50 Tertiary education/University 1 4.17 Graduate (MA, PhD) 1 4.17 Cancer Stage I 6 25.00 II 10 41.67 III 5 20.83 IV 2 8.33 Don’t know 1 4.17 Table 1. Participant demographics summary a Note O-level comprises the first four years of secondary education84. 31 Participant ID Age Interview Language District Occupation Religion Marital Status Household Adults Household Children Level of Education Cancer Stage G087 60 Luganda Kampala Professional/Business person Catholic Widowed 1 1 Primary (P1 to P7) I G088 39 Luganda Kayunga Not employed but looking for work Other Christian Single 2 2 O level (S1 to S4) III G090 63 Luganda Kyankwanzi Commercial farmer Anglican Widowed 7 5 Less than primary IV G091 55 Luganda Kampala Professional/Business person Catholic Widowed 3 1 Primary (P1 to P7) II G092 44 Luganda Wakiso Shopkeeper Muslim Married 4 2 O level (S1 to S4) I G100 39 Luganda Kagadi Small plot farmer Other Christian Married 3 6 O level (S1 to S4) I G109 55 Luganda Mukono Professional/Business person Anglican Married 2 1 O level (S1 to S4) I G114 39 Rutooro* (Runyankole) Kagadi Small plot farmer Catholic Separated/Divorced 3 4 Primary (P1 to P7) III G123 38 Luganda Mpigi Professional/Business person Catholic Married 3 4 O level (S1 to S4) II G137 57 Luganda Luwero Unable to work Anglican Single 1 2 Primary (P1 to P7) III G140 56 Luganda Luuka Small plot farmer Anglican Separated/Divorced 4 4 Primary (P1 to P7) II G143 43 Luganda Bukomansimbi Not employed but looking for work Anglican Single 2 1 Primary (P1 to P7) II G144 38 Luganda Mukono Not employed but looking for work Muslim Married 2 2 O level (S1 to S4) III G145 57 Luganda Wakiso Small plot farmer Anglican Widowed 3 0 Primary (P1 to P7) II G150 29 Luganda Wakiso Commercial farmer Other Christian Married 2 3 O level (S1 to S4) II G151 45 Luganda Wakiso Housewife Muslim Married 5 0 Less than primary II G152 53 Luganda Jinja Professional/Business person Muslim Widowed 3 5 Primary (P1 to P7) II G165 38 Luganda Wakiso Professional/Business person Anglican Single 1 4 O level (S1 to S4) I G179 43 Luganda Wakiso Not employed but looking for work Catholic Separated/Divorced 1 1 Primary (P1 to P7) I G180 60 Luganda Rukungiri Unable to work Catholic Widowed 3 6 Primary (P1 to P7) II G188 68 Luganda Kiruhura Small plot farmer Catholic Widowed 1 1 Less than primary III G190 58 Luganda Namutumba Small plot farmer Muslim Married 5 4 O level (S1 to S4) II G191 62 Luganda Mitooma Retired Anglican Widowed 3 0 Tertiary education/University IV G192 50 English Luwero Professional/Business person Anglican Married 2 3 Graduate degree (MA, PhD) Do not know Table 2. Individual participant demographics 32 3.2 Study Findings Key: I – Interviewer, P – Participant From the in-depth interviews with women receiving treatment for their cervical cancer at the UCI, four major themes emerged from their lived experiences: (1) disclosure and changes to relationships, (2) support from social circle, (3) loss of work and income, and (4) household impacts. 3.2.1 Disclosure and Changes to Relationships When asked about how their cervical cancer diagnosis affected their social relationships, women shared their experiences with how relationships with their friends and families were affected. This also stimulated discussions regarding disclosure; participants spoke about if and who they chose to confide in after being diagnosed with cervical cancer. Some women revealed that they chose not to disclose their diagnosis, keeping it a secret. I have never informed them. How do you even share this? There is nothing I have talked about because those are very complicated issues. (Participant G109, age 55) Many women reported selectively sharing this information with certain individuals such as family members. I: How has this cervical cancer affected your relationship with your other friends? Is there any way it has affected?... Friends, neighbor and other people. All of them. P: The neighbors, no, they didn’t get to know about it. 33 I: Okay, only family members got to know about it. P: umm (yes). (Participant G087, age 60) I did not tell any [friends], I left it to myself except I have got my sister, and she is the only one I told. (Participant G092, age 44) For those women who chose not to disclose their cervical cancer diagnosis, they expressed various motivations for doing so. Some feared being stigmatized and negative changes to their relationships, and others did not want to burden their family and friends with this news. I have [friends] but not that I tell everything to someone, I could tell someone and they would think that is the end of you then they would start isolating you. So, I keep my secret. (Participant G144, age 38) Basing on my parents, they have aged and it’s me who feeds them the most so I also didn’t show them. For a reason, I didn’t want them to get that worry so they don’t know. (Participant G123, age 38) One participant described how she selectively chose not to disclose that she had been diagnosed with cervical cancer with some of her children because she did not want to alarm the younger children who were still in school. Umm, I first told the children. When they diagnosed me, I called my daughter and she met with me in the hospital…The rest when the treatment, when we had started on the 34 treatment because some were schooling and I saw that I was going to interfere with their education. But the one I informed was an adult. (Participant G092, age 42) Similar fears were also expressed by participants who revealed that they did not disclose their cervical cancer status to their partners, specifically. Many of these women feared negative reactions that would lead to disintegration of the relationship with her partner. Okay, I never told my husband that is the honest truth. I didn’t tell him, I reserved it to myself and I said that I will not tell him. I was on treatment without his knowledge… I didn’t tell him, but the bed affairs stayed. However, I would prolong it, I would unnecessarily fall sick, but I would not tell him about the disease (cancer) that I was suffering from…But if I had talked to my husband, I was expecting that there would be a change. that is the reason I kept quiet…you know men when you tell them about the sickness they run away. He will imagine you dying the following day. That is what I was seeing that was coming next, and I said that let me keep quiet. (Participant G092, age 44) The fear of negatively impacting this relationship was realized in another participant’s account of the way her husband reacted in response to the changes that occurred due to her cervical cancer diagnosis. The husband, when they discovered that…the husband, when I was giving birth they told me that I have cervical cancer so I was told that since I am still a postpartum mother…. I can breastfeed for a year. After I got a house maid, and I left her at home. But as a man, he didn’t wait for the period while I was sick. Remember I used to come to Mulago, and they removed a flesh (skin sample), I couldn’t have sex with my husband, so that whole 35 process the man fell in love with the house maid. He married her and had a child with her, but I persevered, I said let me persevere because I have children with this man. (Participant G100, age 39) Changes in the marital relationships following their cervical cancer diagnosis often concerned the impacts on their sexual relationship. The significance of the sexual relationship was highlighted by multiple participants. We stopped having sex when I fell sick because that was the reason, he chased me away. (Participant G114, age 39) Currently it caused me many changes because the husband tells me that he wants to give birth to 12 children and I don’t menstruate, I don’t give birth, even if I have sex with the husband, I don’t get the urge/ feelings like before. Right now, the home, what makes a home big (warm) is having sex with the man. The man buying sugar or good meat; it’s having sex with the man. (Participant G100, 39) One participant with stage II cervical cancer elaborated on the physical impacts of the disease and how this impacted her sexual relationship with her husband. It has affected the relationship with my spouse in the way that I can no longer enjoy…you see for the married people, you are expected to enjoy sex just even the bible has said about it but because it has resulted into early menopause and that one has made me lose interest in sex so I no longer have the interest that I used to have. It has lessened it so somewhere somehow it has affected me. (Participant G192, age 50) 36 She emphasized the perceived importance of the sexual relationship in a marriage and considered herself “lucky” that her husband did not react in a manner that would have been considered normal. The relationship was still there simply because I count myself amongst the lucky people because when you fall sick most of the men run away but for my case it is the opposite. My husband has still loved me the way he used to love me. I can’t say that because I cannot satisfy him sexually just as I used to do, that he has abandoned me, no. So, I count myself amongst the lucky ones. (Participant G192, age 50) Participants shared a range of both positive and negative reactions from and changes to relationships with those to whom they did reveal their cervical cancer diagnosis. While some participants shared that their partners had reacted negatively (or feared that they would), others had experienced more positive responses. These varied responses were also seen in the relationships between participants and their friends and other family members. One of the participants expressed that sharing the news about their cervical cancer diagnosis strengthened her relationships with her family and friends. It did not [negatively] change the relationship that I had with my family members, instead the relationship became stronger, and the love increased because they don’t want me to get any disappointment…They [friends] sympathized with me; they could pray for me so that I could be cured…They became so close. (Participant G191, age 62) 37 Similarly, a participant with stage II cervical cancer and four children, when discussing how her diagnosis affected her relationship with her children, shared that it brought her closer to them. I: You mean you still showed them love the way you used to show them before you got sick? P: And I even went beyond. The way I have been loving them is not like the way I used to. Because I got the condition- of the disease, so I say, haaa my children. Generally, I was in a state of bringing them even closer than before. (Participant G123, age 38) These diverse responses highlight the context-dependent nature of participant’s experiences. Many participants also experienced varying responses from different people in their lives based on attitudes about cancer and its prognosis. Women experienced a range of positive and negative reactions from and subsequent changes to relationships with those to whom they disclosed their cervical cancer diagnosis. Some come and comfort me that I will be fine but others come and discourage me that cancer doesn’t heal that we should stop wasting money for nothing we should stop selling land which is for the children, but others tell me that when you start treating it early you get cured yes there are some who are like that, they come everybody saying his or her words. (Participant G114, age 39) Despite some reports of positive changes and reactions from those in their social circles, many participants revealed that their cervical cancer diagnosis largely had a negative impact on 38 their social lives. After revealing their cervical cancer diagnosis, some women were stigmatized by friends and community members, which led to the deterioration of those relationships. It brought me problems, it took away the love in the family, all the love died out. The other sees you like a rebel. (Participant G100, age 39) I was stigmatized in a way that when I came back people did not believe I went to [hospital] for treatment so there were those who spread the news that maybe the husband had left her, maybe… such funny stories that stigmatized me so much. Because I am poor, they could not believe God made a miracle and I went to [hospital] for the treatment of what? Of cancer. They could not believe. So that was too much stigma that I really faced but with God’s grace, I underwent it. And they were my friends by the way. (Participant G192, age 50) The stigma experienced by some participants was fraught with misconceptions about cancer. Many believed that being diagnosed with cancer meant that the individual would certainly succumb to the disease or that they were contagious. My friends told me that I have got cancer and they have operated me, and they told me who that one; HIV and now has got cancer, she is going to die. All friends kept disconnecting from me like that saying that I am going to infect them with cancer…They said that cancer is contagious, if that one gets close to you and you get in contact with her sweat or if she touches you, you get cancer…Back then we were friends and they used to visit me, and I also used to visit them, but when they discovered that I have cancer, friendship disappeared and I also kept quiet. (Participant G100, age 39) 39 Women shared varying responses from friends, family members, and their partners in response to learning of their cervical cancer diagnosis, however, this was not the case with respect to their children. Children were sometimes the first or only ones to know about the woman’s cervical cancer diagnosis. When I went back home, I first told the children and the kids cried. We all cried. (Participant G179, age 43) The news of the cervical cancer diagnosis often caused great emotional distress, but women did not report it negatively impacting the relationship with their children in the same way it often did with their partners or friends. The emotional distress experienced by their children was often described by participants as coming from a fear of losing their mother to this disease. I told the children and others cried…Because they saw that I had been operated and the site was rotting, and they cried thinking that I am going to die. But I told them one thing that we cling unto God, we pray, and with availability of medicine I will be cured. (Participant G100, age 39) My children were so much stressed because first of all they saw me falling very sick, losing weight, not happy. They even cried, so they were really deeply affected. They knew I was going to die…My relationship with them was somehow affected simply because I didn’t have more time with them simply because I was sick. Though I would feel like hiding it from them but it wasn’t possible so they somehow missed my love and care for them so it was now them to care for me. (Participant G192, age 50) 40 The wide range of reactions and impacts following disclosure of the participant’s cervical cancer diagnosis was affected on the type of relationship with different individuals within their social circles and their personal attitudes. The fear in their children’s reactions often came from a place of care for their mother, whereas negative reactions from partners or friends had less to do with how the disease affected the participant and more with how it in turn affected them. Where there was a detriment to the relationship with friends, they often feared being associated with a cancer patient or contracting cancer from them. For partners, the perceived impacts to their sexual relationship was often a major factor in the negative impacts to their relationship. 3.2.2 Support from Social Circle For those women who shared that they had been diagnosed with cervical cancer with people in her social circles, many reported receiving support from her family and community members. This support could broadly be categorized as non-financial support, and financial support. Examples include providing comfort and encouragement, as well as money to help with associated medical costs. However, this was not the case for all; some women reported a lack of support, whether it was explicitly withheld or simply absent. Non-financial support Upon telling others about their cervical cancer diagnosis, many women reported non-financial support from children, partners, family members, and community members. This included emotional support such as words of encouragement, expressions of concern, and prayers for well-being. 41 They somehow encourage me, but they also become distressed when you tell them the kind of a disease that you are suffering from. They became very sorrowful but after that, they would say aah you will be well. (Participant G152, age 53) When my family heard about that issue, and my friends, because I did not hide myself, oh dear, they were hurt more than myself… and they supported me a lot. (Participant G165, age 38) Many participants’ descriptions of emotional support referenced their faith and religion; many women reported receiving moral support from community members from her place of worship. Emotional support in the form of prayers were recognized as a significant form of encouragement. References to their faith were found consistently across all religious groups. I have friends at the village church…Those at church pray a lot for me. They take time to pray for me and my names go to them. (Participant G137, age 57) Because that time the people we were working with were born again ladies and men. Now for them -they were strengthening me, praying and telling me not to give up, praying, nothing fails God, it will come to pass, no matter the situation, it will come to pass. (Participant G088, age 39) I: How about your family members?... Now, how have they helped you? P: They pray for me. If in need and they are willing to help they send me. (Participant G151, age 45) 42 Another significant form of non-financial support was from the people who spent their time to physically care for them. This included accompanying them to the hospital for their appointments and treatments. Many of the individuals who provided this type of support were reported to be children or family members. He [husband] used to come with me at the hospital and even the time when I was in [hospital] he also cared about me for 2 weeks because the routine was for 2 weeks, each member of the family could care for me for 2 weeks so even him but because we had left some of our children in the home, at home alone so he had to come back and take good care of them. (Participant G192, age 50) The child has indeed been very caring, he leaves his work, and he cares so much, right now he has left his child and brought me [to the hospital], yesterday we were here for blood checkup, today we are here, even tomorrow we shall be here. (Participant G090, age 63) While many women did report numerous instances of non-financial support, this was not the case with every participant. Some women had described experiences where they were met with no or limited support. Certain individuals were also more supportive than others, and those who did provide support were not always unwavering. One participant with stage III cervical cancer described how her husband used to accompany her to the hospital but eventually rescinded his support. 43 He used to take care of me yes, he even used to bring me here from home in Kagadi two times, the third time he refused yes and even now he doesn’t care about me. (Participant G114, age 39) In this case, the participant shared her husband’s declining support in the context of their dwindling sexual relationship caused by the physical impacts of her cervical cancer. The impacts of cervical cancer on this dimension of their relationship therefore also had impacts on the support she received from her husband. In similar cases, deterioration to the relationship following disclosure was often coupled with a lack of moral support. Financial support Participants who reported receiving various forms of non-financial support often also received financial support; these forms of support were often connected. Those who offered financial support were also those who responded more positively following disclosure, providing emotional support and expressed concern for the participant. Women reported instances financial support from children, friends, and family members to help with costs associated with her cervical cancer care such as transportation to the hospital, medical bills, and drugs. Paying transport, he [son] has been paying electricity bills, buying drugs when they are out of stock in the hospital. (Participant G087, age 60) Friends have helped me; friends have been there for me, and I wouldn’t have managed to reach the process of operating me. I would have been demotivated because traveling the distance takes money, with this situation, money goes (spends a lot), but I told friends, and they worked together and contributed to see that I survive. Because at every stage I 44 would reach, I would tell them, that now they have told me that the stage is for a heart ‘photo’ (X-ray/scan), and they would ask me, how much, and I would tell them and they would contribute, but it is friends that have been there for me. (Participant G179, age 43) They [relatives] have been so much concerned, they pay money. If the medicine is for buying, they handle, plus eats and transport. (Participant G137, age 57) However, similar to the non-financial support, this was not the case for all participants. Some participants reported varying experiences with certain individuals being more financially supportive than others. Those who responded negatively following disclosure and did not provide non-financial support rarely offered financial support. One participant expressed her frustration with the lack of financial support from some of her relatives who also had not offered any other forms of support regarding her illness. They kept quiet, no one has ever sent me that 20,000 shillings is there. Even if they give you 10,000 you appreciate, but no one has ever given me. (Participant G145, age 57) However, when discussing financial support, women also acknowledged other people’s financial challenges and varying ability to financially help her. A participant with stage II cervical cancer who was unable to work, described how while her family members supported her non-financially, they were not able to provide any financial assistance. They [relatives] also encouraged me, but they also don’t have money to help me. (Participant G180, age 60) 45 One participant, a small plot farmer with stage II cervical cancer, described how her fellow farmers, gave her money when they were able to, but also struggled financially themselves. Sometimes they also don’t have (money) because most of the friends are in the villages, they will have in one season and gives you but, once it is over, s/he also doesn’t have money. (Participant G190, age 58) Conversely, another participant poignantly recounted an example of when support was explicitly withheld from her. She had been a member of a savings group who would loan her money to travel to the hospital, but her friend had urged the rest of the group to halt this financial support in fear that she would pass away before repaying the loan. That very one, we had a group, a savings group we were in, I would borrow money and come this way to Mulago, now she went and told the members and the executives…she told them that do not give her money again she is going to die who will pay it back? It is I who has been her surety, signing for her as the next of kin so do not give her money again. That matter threw me far off. (Participant G100, age 39) Similar to experiences with non-financial support, participants had varying experiences with financial support regarding providers, amount, and duration. While most participants reported receiving at least some form of support from individuals in her life, some women also reported a lack of support, or support that was inconsistent. Overall, participants reported various examples of non-financial and financial support from friends, family, and her community; both types of support were regarded as significant forms of assistance in their cervical cancer journey. 46 3.2.3 Loss of Work and Income When discussing the social impacts of her cervical cancer, women often spoke about how it impacted her work and the resulting effects on her income. Participants noted how the physical repercussions of the disease changed her ability to work and subsequently provide for her family. They also often noted the time they were forced to take away from work for treatment, and the resulting impacts on her ability to earn money. Furthermore, these impacts to work and income were not limited to herself, but also frequently affected her family members. Interruptions to work and employment When reporting their occupations, two participants said they were unable to work, and four others were unemployed but looking for work. Many participants reported their professions but then also spoke about the changes to the type of work they have been doing since becoming afflicted with cervical cancer. One participant with who was unable to work spoke about the changes to her business due to her cervical cancer. My work, I was having a business, it all got finished (collapsed) ever since I started coming here to get cancer medication, the business got finished. Now the energy also reduced I can no longer dig; I am just there like that. (Participant G180, age 60) Another participant, a small plot farmer with stage I cervical cancer, describes how the physical impacts of cervical cancer treatment changed the type of work she had to do to provide for the family. 47 I no longer do tasks that need lots of energy. Digging, I used to make bricks and I would sell them and get school fees for the children. I used to plant crops and I would at times sell cassava, beans, but I no longer sell them. Currently I don’t dig. I no longer have energy because right now the way they operated the uterus, all the energy comes from down there. I no longer dig… heavy tasks like making bricks I couldn’t make them, digging I couldn’t dig, I could do household chores and other things, I could also grow cabbage, green leaves and eggplant or tomatoes, things that brought in some income, and I reared chicken at home. (Participant G100, age 39) This participant attributes the physical changes and her lack of energy to the operation she received on her uterus. She briefly alludes to her perception that the source of her energy was her uterus, and that the operation impaired this. She therefore felt that she did not have enough energy to do physically laborious tasks such as farming. I: Eeee (okay), resuming work, did you resume work? Making bricks? P: Aaaa (no). You can’t. The operated site can hurt, down here hurts, the radiation affected me aahaah (no) I don’t do that. (Participant G100, age 39) These changes to work and income were particularly notable among participants whose occupations involved farming; five of the six small plot farmers and both commercial farmers spoke about changes to their work and income. Furthermore, all five small plot farmers and one of the commercial farmers directly attributed the impacts on their work and income to the physical impacts of the disease and/or treatment. 48 In some cases, a woman’s lack of ability to work meant that others had to take on more work to earn money; these extra responsibilities were usually taken on by their children and husband. One participant, a commercial farmer with stage II cervical cancer, describes how her husband took on some of her work when she became ill. P: Ever since I started falling sick, I have not earned [money]. I: Ummm. Because you cannot carry out your farming tasks. P: Umm. I couldn’t manage. I: Don’t you have some people to put on the garden so that they can dig for you? P: Okay, it is my husband who is usually there. I: Yet he must handle his tasks. P: Eee exactly. He wakes up early and goes to dig, and then returns and goes to his small business were he works…It has affected me because he keeps calling me asking how far the treatment is? He sees when the responsibilities are beyond him at home because he is alone no one is helping him. (Participant G150, age 29) Another participant with stage III cervical cancer who was unemployed but looking for work described how she lost her job due to the time she took to be away to receive treatment for her cervical cancer which had also made her physically weaker. 49 I used to stay in Munyonyo just that right now I am this side and they had to do radiation therapy and the time I spent in the hospital this side in Mulago was long, they replaced me at work and that time the radiation drained me, I was extremely small and weak. (Participant G088, age 39) The time taken off work to go to the hospital in order to receive treatment was often described to be a significant reason for changes to work and income. One participant, a businessperson with stage II cervical cancer, succinctly summarizes this trade-off: I am going to the hospital most of the time. Now when I am gone to the hospital, I am not working. (Participant G091, age 55) When discussing impacts of her cervical cancer on others, many women also frequently mentioned the impact to her caregiver’s work. Those who provided both financial and non-financial support were impacted by the changes brought on by the participant’s cervical cancer diagnosis such as increased visits to the hospital and the associated costs. Women often spoke about their children as providers of non-financial support, particularly when it came to accompanying them to the hospital for treatment and appointments. Ok that one is married, she first left work. Each time I would come here to the hospital, she would accompany me, we come together… She paused work for about 8 months. (Participant G092, age 44) When I got sick, maybe bothering them to bring me to the hospital, and losing their jobs because they no longer work. … Bringing me to the hospital, taking me back, my child has very caring… The child has indeed been very caring he leaves his work, and he cares 50 so much, right now he has left his child and brought me, yesterday we were here for blood checkup, today we are here, even tomorrow we shall be here. (Participant G090, age 63) They escort me, every time of coming here [to the hospital] they escort me. The day for coming, they leave their work, and they bring me. They accompany me and they bring me here, because I couldn’t understand things (about the disease and Kampala). (Participant G180, age 60) The time taken to be at the hospital for medical appointments related to her cervical cancer diagnosis affected not only the participant’s work and income, but often her children’s as well. One participant expressed the gravity of the impacts to her children and herself. It has affected them greatly, especially my son. His works have been destroyed. Finance wise, psychology, and I myself, I have tortured… I too all my works are destroyed. Do you know losing work? Completely losing. The loss that I have is great. (Participant G152, age 53) However, some women also mentioned multiple people taking on the role of her caregiver. One participant, a widow with stage IV cervical cancer, describes how this responsibility was shared among her children to minimize interruptions to their jobs. They [children] could request for permission and then came with me to support me because Kampala is a wide place, I couldn’t know all the places so they could alternate. One comes today, another one tomorrow then another one tomorrow. Sometimes they 51 could drop me here, go to work then I could tell them that the exercise is over, and they could come and pick me. so, it did not affect their work. (Participant G191, age 62) Aside from their children, some women also had their husbands accompanying to their medical appointments. The husband’s work was interrupted because he sometimes used to bring me [to the hospital]. (Participant G123, age 38) Financial challenges The interruptions to work for both the participant and others often resulted in a loss of income. For some participants, the time spent at the hospital simply meant time away from working to earn money. For others, the physical impacts of their illness meant they had to take time away from work, which also reduced their income. I would be weak, I mean things did not go on well…I wasn’t earning because I have not been working. (Participant G087, age 60) Eee, the sickness has affected work in the way that the treatment, as you can see, it is for every day, every day-you must do what, you must come for treatment. Remember you are not working; you are spending and when you come back from treatment, you are weak, you want to rest. In otherwards, our income-my income dwindled so much. You spend a lot, yet you earn little. (Participant G123, age 38) A reduction in income caused by various aspects of a participant’s cervical cancer diagnosis often created financial challenges for women and their families. Financial challenges 52 related to women’s cervical cancer diagnosis were very common and were described by nineteen out of twenty-four of the participants. Many of these participants spoke about their loss of income and resulting financial difficulties in relation to the increased financial demands from her cervical cancer care. These financial challenges and participants’ cervical cancer often functioned bidirectionally, with one exacerbating the other. I: What kind of work do you do? Are you in business? P: I am in business, I sell clothes…I have a shop; I sell clothes and I tailor on a sewing machine. I: Now that you haven’t been there, you have now lost a lot of money. P: A lot, a lot of money because the loss that I found when I went back was big, debts to pay, the children lost a lot of things. They all needed to be paid, but I don’t have the money. The money goes to medical care. (Participant G152, age 23) These financial challenges created by various aspects related to the participant’s cervical cancer diagnosis and treatment often exacerbated their illness. One participant with stage III cervical cancer and experienced a loss of income from no longer being able to work as a small plot farmer, described how her financial challenges created barriers to accessing care at the hospital in Kampala. 53 When I fail to get money to come to Mulago, yes sometimes I fail to get the money to bring me from home to come here and I decide to miss, and I don’t come here to save my life. (Participant G114, age 39) As a result of a loss of work, many women also reported selling their belongings to earn money for the family, including livestock, land, and personal items. Currently we have been having only goats, but they got finished because of drugs. The other day we sold all of them and finished because of transport. (Participant G140, age 56) I: Umm. So, currently work stalled a bit. P: It somehow stalled. I: Now, how have you been doing it? Because right now you don’t have enough money. How do you now handle because you are still on treatment? P: Now with my husband, we had 2 acres of land. but he cut off one acre and sold it because of the situation, he didn’t have any way to take care of me with this disease without money. (Participant G190, age 58) The impacts of this loss of income were not only limited to the participant herself, but affected children and partners whose work was also interrupted. Participant G150, whose 54 husband helped with her with her job as a commercial farmer when she became ill, explained how this impacted his job and consequently, their household income. I: How is the husband’s income ever since you fell sick? Did it remain the same, or it increased? P: It weakened a bit because he delays to go to his business. He first stays home and digs, takes my goats that I was rearing for grazing. Okay he goes to his work at around 1pm or 2pm. He delays at home. Remember he must prepare children for school, he goes to the garden to dig, he ties animals (taking them for grazing). He then goes to the street where he works at. I: In the end his work is also affected. P: Ummm (yes) I: That means the money also reduced. P: It reduced. (Participant G150, age 29) She then elaborates on how this loss of income created financial challenges with respect to the financial demands of her cervical cancer care; specifically, the money needed for the commute to the hospital. 55 It inconveniences him because there are times when I call him that (money for) transport is finished, and I could see that it has inconvenienced him. But he would find where to borrow from and he sends me. (Participant G150, age 29) These financial challenges therefore also impacted others in her household who contribute to and rely on the household income. One participant recounted the financial hardship felt by her husband: He said that I brought him poverty, every money he gets he must give it to me to come to the hospital. (Participant G100, age 39) Participants largely pointed to the physical impacts of her cervical cancer, as well as the time taken to travel to the hospital and attend medical appointments as reasons for her work being disrupted. These challenges related to her illness subsequently impacted her caregivers, who were often her children and her husband, and their work. Financial challenges often ensued due to a loss of income, which impacted the entire household and exacerbated the financial burden related to her cervical cancer care. 3.2.4 Household Impacts Following their cervical cancer diagnosis, participants described various changes in the household. This often included changes brought on by financial challenges which led to shifts in household roles and allocation of limited household funds. Almost all women spoke about children and how they were affected, thus highlighting the importance of children as both dependents and caregivers. Interruptions to children’s schooling were frequently reported for a variety of reasons, with many being related to a reduction in household funds. Women also 56 spoke about shifting duties and responsibilities in the household, particularly with children and their husbands. Children’s school interruptions Many women reported various impacts on their children, with a major one being interruptions to children’s schooling. Children’s education was a significant concern for many participants. I felt bad because I knew that I am now suffering from cancer, and I am not going to be able to do powerful things. I thought that I might die and leave my children uneducated. (Participant G100, age 39) Seventeen (70.8%) participants spoke about interruptions to or changes to children’s education. Some were more affected than others, and there were various reasons for children to have missed school. Some participants shared that their children missed some school on days where they took on caregiving duties to bring her to the hospital. P: Tuition didn’t fail but sometimes telling him/her to accompany me to the hospital. Sometimes when s/he has not gone to school I tell her/him that first accompany me to the hospital, s/he doesn’t study. I: How many days does s/he miss school? P: Only 2 days. I: Eee, he misses 2 days and s/he goes back to study. 57 P: Ummm (yes). (Participant G151, age 45) However, in many cases, children’s education was interrupted due to a lack of money. Of the seventeen participants who had reported interferences to children’s education, thirteen spoke about it directly in relation to financial challenges brought on by her cervical cancer. They no longer attend school they are at home…there was no money to pay for them…now it was me who was looking after them yes, now when I fell sick I no longer have a job to do, money for paying for them is not there, yes, now they are at home seated… (Participant G114, age 39) The aforementioned financial challenges from a loss of income, compounded by increased financial demands due to her cervical cancer meant that participants often had to choose between spending the limited household funds on children’s education or directing it towards her cervical cancer treatment. The children’s education first paused because at that time I was coming to the hospital every day. Every day I had to use money for me, and to pay the children’s school fees….at that time there was not enough fees, so I paused them from school to first get the treatment. (Participant G092, age 44) Some participants also reported that their children had to take time away from school to work as a result of the financial challenges brought on by her cervical cancer. 58 They [children] were scared, one of them even refused to study he said that “I am not going back to school, let me look for money so that you can get an egg or a yellow banana or sugar, for life to move on”. (Participant G100, age 39) … money for paying for them is not there, yes, now they are at home seated cooking for me, and I eat yes, the older ones are digging. (Participant G114, age 39) Participant G114, a woman with stage III cervical cancer and four children, continues to explain that the financial challenges associated with paying for school meant that the children had to stay home to work. The older ones dig, and the young ones are just there but now like the one of 6 years she has even never gone to school…He was going to go but that time when I saw that I have failed to pay for others; I realized that I will also not educate this one, so he never went there. (Participant G114, age 39) Another participant, a small plot farmer with stage I cervical cancer, who has six children, described the financial challenges associated with paying for her children’s school fees and how this created interruptions to their education. I have 6 children. 3 boys and 3 girls. Now it affected me quite a bit because back then I used to work hard, I wondered where school fees is going to come from? Remember their father’s income is small, we would both contribute, I would bring, and he also brings and we get school fees…. currently one child stopped schooling, he had finished S4 and dropped out of school. Another one had finished P7 so we contributed towards him/her, now is in an institution studying and others are there too studying…They first spent a 59 whole full year without schooling. They were in private school and they stopped… (Participant G100, age 39) She later indicates that some of her children did not return to school; to keep one of her children in school, she made the switch from private to public school. The other was in senior 2, and we put him in USE [public sector school] in secondary and he finished S4 and I put him in an institution he wanted to study lab technology. Right now, he is schooling. Now I rear goats, chicken, pigs as I sell them, I give him money and he is going to complete in December. (Participant G100, age 39) Some participants described various ways they tried to minimize the interruptions to children’s schooling. Since school fees were usually collected during exam times, some participants sent their children to school during the year but were unable to pay tuition, thus their children did not complete their exams. Yes, they go [to school] and when time for tuition dismissal to do exams comes, they decide to sit at home, but before they send them home for school fees they go there and attend like that. (Participant G114, age 39) I refused them because we didn’t have money and they didn’t sit for exams. The whole month they didn’t sit for exams…The whole of November they didn’t study. They started the term…. they had studied the whole year. We were paying but they didn’t study this term. They were also seeing that there was no money. (Participant G140, age 56) 60 Another participant describes her experience with having to make the difficult decision to use her limited funds to attend to her cervical cancer-related needs instead of paying for the children’s school fees. In this case, her children completed the exams but were held back because she did not pay the fees. Umm. There is way it has affected them because this term, they have not gone to school for 2 months. The headmaster reached an extent of calling me, that bring the children back to do exams and I told him that I thought you were going to dismiss them. Although they did the exams, the reports were retained there. Their education stalled because I was down yet I had to first care about myself- they first paused. Eee, they were affected. (Participant G144, age 38) Some participants noted that their children did not miss any school; however, this does not mean that they did not experience financial challenges. One participant, with stage II cervical cancer and was unable to work, described the trade-offs she made to send the children to school. They study, but since I got sick with cancer, therefore the money reduced. They have not got all the necessities like before… (Participant G180, age 60) This participant, who herself had a primary-level education, also spoke about the importance of allocating fees to ensure the children could get school reports to be able to advance their education. Pay some little, the headmaster is patient, when I get, I take it there (fees), and I also get transport to come. Like that like that…Eee 3rd term I saw…if they don’t get reports, how 61 will they go to another class? So, I took extra consideration a lot, Eee. (Participant G180, age 60) Overall, interruptions to children’s education were a widely reported consequence of a participant’s cervical cancer diagnosis. In many cases, it was due to a lack of financial resources. Participants, while wanting to send their children to school, often had to manage the various financial demands within the household; her cervical cancer often exacerbated this financial strain. Women also described various changes and adaptations they made while trying to ensure their children could attend school. Changes in household roles Following their cervical cancer diagnosis, participants also often reported changes in household roles, including chores and domestic work. While many women reported changes to their occupations outside of the home, some also spoke about changes to her work in the domestic sphere. For some women, their work was limited to the domestic sphere. One participant, a housewife with stage II cervical cancer, describes her role within the house and how this was affected. I: What type of work were you doing? P: Nothing, I am married I carry out domestic activities. I: Eee, you carry out domestic activities. P: Ummm (yes). 62 I: Is there a way it has affected your household chores? The household chore you have been doing. P: Ummm, it has somehow affected. I no longer have energy to work. (Participant G151, age 45) One participant, a widow with stage IV cervical cancer, describes how her illness rendered her unable to do household chores and how this responsibility was shifted onto the children. I: Housework, are you still working as you used to before you fell sick. P: I don’t do anything. I: Like washing utensils, cooking… P: Uhmuhm, I don’t do anything. I: Eee, which people support you the most? Do grandchildren help you? P: Grandchildren have been supporting me, but now that I am with my child, she is the one that does all. I: She does all. P: Umm (yes). I At the moment you cannot do house chores? 63 P: Umm (yes). (Participant G090, age 63) When the participant described being unable to carry out household chores, it was often the children who took on these roles instead. I have children at home. They have been doing that work like washing, fetching water, mop, just like children’s tasks at home, they have been coordinating it so well. (Participant G123, age 38) One participant further explained how her decreased ability to do housework impacted her ability to care for the family. She speaks about her perception of the role of a mother, and more poignantly about how she now does not feel as though she can adequately fulfill that role since being diagnosed with cervical cancer. Only that I can no longer be a good mother as I used to be. A good mother wakes up very early, prepares for the family. A good mother is an engine of the family. I can no longer, now it is them mostly to work for me. I work, I don’t say I don’t, but I can no longer do it the way I used to do it…I am no longer a good mother because a good mother cares for the family. Yes, so it is now them [her children] to care for me more than I do because they cook, they wash (clothes)… I don’t say I don’t wash but I am not very strong. They wash, they prepare, yes. (Participant G192, age 50) This participant also described her children being the ones to take on her roles within the domestic realm that she is no longer able to do. Women’s altered ability to work, both inside and 64 outside of the house, meant that others in the household had to compensate by taking on additional responsibilities. Aside from their children, some women also said that her husband took on additional roles within the house as well as paid work to provide for the household. As previously indicated, many women experienced various forms of support from her husband. The husband as a household provider was often important for the children, however his support was not always extended to the participant herself. One participant described how her husband had left her and started a family with another woman due to the physical repercussions of her cervical cancer that left her unable to have sex or bear more of his children. She described that she “persevered” and remained married, revealing that it was so that he would still provide for their children. Not like back then, because in a week he could buy sauce (meat)…in a week twice or thrice but currently once a week or not giving you at all. Or he can carry his children and takes them to town to a hotel and he buys them pork and they eat, and he brings them back at home without you eating. (Participant G100, age 39) This is a poignant example of how children’s wellbeing was often a priority within the household; but even so, children often felt the impacts of the changes within the household that were the result of participant’s cervical cancer. Reports of children’s education being interrupted were common as women often had to make difficult decisions when allocating household funds, which were often reduced due to changes in her ability to work. The physical repercussions of her illness also impacted her ability to work within the home, meaning that household roles among family members often shifted, with children often taking on domestic work when participants were unable to. 65 CHAPTER 4: DISCUSSION 4.1 Summary and Interpretation of Findings This thesis describes the experiences of how cervical cancer has socially impacted some women and their children in Uganda. Women who participated in the qualitative interview component of the ASPIRE Generations project spoke about their experiences with how their cervical cancer diagnosis and treatment impacted and changed relationships with their friends, partners, and children, as well as subsequent impacts to these individuals. Overall, women’s individual experiences varied, however certain themes were common among many participant’s accounts of their experience including changes to relationships, receiving various forms of support, impacts to work and income, as well as overall impacts to the household. Many women revealed that they did not disclose their cervical cancer diagnosis to certain people due to a fear of negative reactions, namely stigmatization and risk of subsequent deterioration of relationships. For those who did disclose their diagnosis, many experienced negative changes to certain relationships with friends and her partner. In negative responses from friends, women cited negative perceptions associated with her cervical cancer diagnosis, some of which stemmed from misconceptions about cancer. This corresponds with previous literature which shows varying levels of knowledge about cancer among certain groups in Uganda. Secondary school students in urban Kampala, while ranging in responses, generally had good knowledge and positive perceptions; the majority of respondents (74.8%) knew that cervical cancer was preventable85. However, among women in rural Mayuge, a vast majority of participants (96.8%) showed limited levels of cervical cancer literacy86. In our study, in participants experiences with friends, they spoke about misconceptions including that cancer is incurable and that it is contagious. Stigma and embarrassment have been shown to be barriers to 66 accessing cervical cancer screening among Ugandan women20. Concerns about other people’s perceptions therefore also impacts women’s choices regarding cervical cancer care, as they can have concrete and material consequences. This is exemplified in our study which revealed a pattern in which negative reactions following disclosure also came with a subsequent lack of social and financial support from those individuals. Our findings demonstrated that any negative reactions from women’s male partners following disclosure were often related to the impacts on their sexual and financial relationship. This corroborates with findings from a previous study about facilitators and barriers to cervical cancer screening in Eastern Uganda whereby some women expressed concern that their spouse would leave them if they were diagnosed with cervical cancer due to not being able to have more children and/or additional expenses associated with her disease87. Both of these scenarios were reflected in participant’s experiences. In our study, some women experienced their husband deserting her and/or engaging in relationships with other women following the impacts of her cervical cancer. In Uganda, polygamous relationships are common, with the most recent census (2014) indicating that 7.1% of men and 8.3% of women were in one88. Polygyny, a form of polygamy whereby a man has multiple wives, is common, while the opposite (polyandry, where one woman has multiple husbands) is not89. This poignantly reflected the power dynamic in many relationships between women and their husbands. It has been previously highlighted that fathers hold greater decision-making power in a Ugandan household, which may be related to their resources acquired through relationships and marriage33. Since women take on more unpaid labour and care roles, many women may rely on their husbands for financial support29. Women in our study often spoke about receiving financial support from their husband for the increased costs associated with her cervical cancer diagnosis. Some participants described remaining in a 67 marriage as a method to stay connected to support from her husband, for both herself and her children. Our findings demonstrate that the demands of cervical cancer care increased the financial burden women and her and her family, and financial support was important for accessing care. In a study on barriers and facilitates to the uptake of cervical cancer screening among women in Uganda, residing in a rural area, as well as limited resources and health infrastructure were found be two of the greatest structural barriers20. Similarly, these challenges also manifested in women’s experiences accessing cervical cancer care in our study. Previous research has shown that direct and indirect, medical and non-medical expenditures were impoverishing, catastrophic expenses for many patients in Uganda90. Indirect, non-medical expenditures included costs such as transportation and food during hospitalization stays; medical costs included medications and informal payments90. A study on the economic and social consequences of cancer in neighbouring country, Kenya, showed that non-medical expenses accounted for a fifth of patients’ cancer-related expenditure91. Although cervical cancer care is largely offered for free at the UCI, patients often still have out-of-pocket expenditures. Women in our study frequently spoke about the overwhelming costs associated with travelling to the hospital in Kampala, and sometimes mentioned having to pay out-of-pocket for medications. Medication stock-outs were common at public hospitals, and patients would have to purchase medications if they were not in stock at the hospital pharmacy45. Transport costs exacerbate the socioeconomic burden on cervical cancer in rural Uganda92. However, our findings show that this was also a burden on women from Kampala and neighbouring districts, Wakiso and Mukono. The public Ugandan health care system follows a decentralized referral structure whereby community-based VHTs often refer patients to higher-level facilities42. Smaller, local health facilities do not have the 68 capacity to provide care to patients requiring more specialized cancer care. Since the UCI in Kampala is the only comprehensive public cancer care centre in the country, although women may not need to pay for the treatment, they often still incur high costs when attempting to travel from their home to the UCI. Indirect expenses of patients in Uganda were primarily considered to be lost wages by patients and their attendants90. This was also the experience among women in this study who frequently recounted how their cervical cancer impacted their work and income, largely by way of reduced physical energy and lack of time, both due to demands of her cancer. Physical impacts on her body after diagnosis and treatment were often described as negatively impacting women’s work. Some women had to change the type of work to something that required less physical labour, such as from making bricks to rearing goats or selling her possessions. Changes to work and income were very common among participants whose occupations involved farming, particularly when related to the physical impacts of cervical cancer diagnosis and treatment. Loss of work due to the time spent commuting to and attending treatment was reported by participants with various occupations. Control over time is a critical factor for women’s potential to benefit from participating in the labour market93. The added time constraints associated with women’s medical needs thus not only directly leave less time to earn wages but may constrain her in the type of work she can take on, whether that be lower-paying jobs, or more precarious or unsafe labour. Overall, loss of work and income have significant impacts for herself as well others. Women in Uganda comprise 39% of the national labour force, and are significant income earners for their household27. Therefore, when their income is reduced due to loss of work, the overall household income is also reduced. This may have implications on gender relations in the household. This is because household income has been associated with freedom; when 69 household resources decrease, husbands have been found to assert themselves more and take more control93. Decreased financial resources coupled with decreased power may leave women even more vulnerable. While women largely spoke about the material consequences of the loss of work, some participants also shared that this also resulted in negative psychological outcomes which compounded with the ensuing challenges. Changes to work and income were not only limited to the participants themselves, but also described for people who took on caregiving roles, mostly whom consisted of children, as well as their partners, and other family members. However, caregiving often came with various costs to those providing this support. Women in our study often noted that children took on more household chores to relieve the woman of this responsibility. This is consistent with findings from a systematic review on the socioeconomic impacts of cervical cancer on LMICS which indicated that children frequently took on caregiving roles, although no studies directly surveyed children59. The burden of unpaid care work in Uganda is largely borne by women, and girls often leave school to do this type of work30. Additionally, most participants in our study attributed interruptions in children’s education to financial challenges. When financial resources in the household were diminished due to her and her husband’s lost wages, compounded by the financial burden created by the direct medical and non-medical expenses of her cervical cancer treatment, many women reported ensuing challenges to pay for children’s school fees. Although Uganda has universal education for primary and secondary school (UPE and USE), there are often still hidden costs such as school supplies and lunches that require money37. However, given the issues with the quality of education in public schools, many parents opt to pay for their children to attend private school, if they are able37. 70 In our study, participants described various strategies to support children’s education when experiencing financial challenges such as switching to UPE or sending children to school until exam time when school fees were collected. However, the resulting consequences are a decrease in the quality of education or impacts to educational attainment. Students must pass the Primary Leaving Examination in order to attend secondary school, and this is often a privilege only afforded by children who have attended private or boarding primary schools in urban areas36. The 2022 Global Gender Gap report ranks Uganda as 122nd in the world in gender parity in educational attainment whereby females have lower literacy levels and rates of enrolment in tertiary education29. This is consequential because formal education enhances employment opportunities, and in-turn impacts social mobility27. In a recursive manner, this also impacts health literacy which may exacerbate the sociocultural barriers to accessing cervical cancer care. Level of education was found to be a significant factor in cervical cancer literacy among women in rural Uganda; women with lower levels of educational attainment had less awareness about cervical cancer risk factors, available services, and lower levels of attention to screen86. More broadly, maternal education is also negatively associated with child mortality as it delays marriage and pregnancy, as well as contributing to better income94. Under-5 child mortality is a significant indicator of well-being and in Uganda, each additional year of a mother’s education was correlated with a 16.6% decreased chance of death for her children94,95. Ultimately, the impacts to children’s education are significant for health and gender equality outcomes. 4.2 Implications for Policy and Research The results of this qualitative analysis demonstrate that there are various indirect and widespread social impacts of cervical cancer, for both women and their families in Uganda. First-hand accounts from women receiving cervical cancer treatment at the UCI contributed to 71 our understanding of why and how the impacts were experienced. The choice to not disclose her diagnosis was often related to stigma and misconceptions; without disclosure, this prevents women from seeking social support for her cervical cancer. Similarly, negative impacts to relationships with friends and family were often due to negative attitudes about cervical cancer, which also diverted social support. With her husband, the physical impacts of her disease affecting their sexual relationship were often highlighted in the deterioration of this relationship. Impacts to work and income for herself and others, resulted in changes to household responsibilities and diminished household financial resources. This had consequences for the women and her children, with some participants struggling to choose between attending treatment or sending her children to school. Indirect expenses for “free” services such as transportation required to get to the singular comprehensive treatment centre located in Kampala, and hidden fees associated with UPE and USE such as school supplies can be prohibitive to accessing either of these publicly offered programs for women and their children. Policy implications These findings highlight multiple needs and shed light on what we need to further understand to appropriately meet those needs. Social supports for women and their families are needed to mitigate the various indirect impacts of cervical cancer. The financial challenges caused by the demands of treatment and loss of work exacerbate one another, and are left as a burden on individual patients and their families. Social safety nets such as government benefit packages to subsidize related costs, and transportation vouchers help mitigate the socioeconomic burden of cancer on households are warranted91. Previously expressed by others, as well as participants in our study, were requests for subsidies to help facilitate access to cervical cancer services, although it is unclear whether it is feasible due to resource constraints96. 72 Access to cervical cancer treatment in Uganda is also constrained by the referral structure of the health care system. While it is a decentralized system, the way it is structured where higher levels of health services are situated in urban centres, makes access to specialized care such as cancer treatment, more difficult for those who live in more rural areas. The Ugandan government has committed to opening regional cancer centres, however there are already concerns regarding funding and long-term sustainability; a lack of resources is already a challenge meaning the full suite of cancer services cannot be offered97. Resource constraints must be met with political will and support in order to adhere to the commitments that would improve structural access to cancer care. This investment would in turn help avert the costs associated with the burden of cancer such as the loss of work, both for individuals and at the societal level. Cervical cancer presents a particularly unique opportunity to address the rising concern of NCDs because of how closely linked it is to a communicable disease, HPV. Integrating NCD management into existing health systems, which tend to emphasize infectious diseases in LMICs, will be critical98. As demonstrated by participants in our study, both non-financial and financial support from friends, partners, and their children, were related to responses following disclosure. Where there were negative attitudes from male partners and friends, misconceptions, and stigma regarding cervical cancer, women chose not to disclose or experienced deterioration of social relationships, and a subsequent lack of support. Discriminatory attitudes regarding cervical cancer perpetuate stigma in the community and have been shown to prevent women from accessing screening and treatment99. This is an opportunity for broader messaging and health education that targets not only women at risk for cervical cancer, but the broader community as well. Dispelling myths and misconceptions would decrease stigma, addressing this barrier to access and also encouraging support. Perceived social support from friends and family has been 73 shown to help patients find positive meaning in their cancer experiences, reduce adverse psychological effects of treatment and support disease management100. Support from friends and family, while important, also came with costs to those who redirected their own time and resources to care for patients. Increased social supports for patients would help relieve these individuals of those burdens. However, family caregivers in particular have been recognized for their integral role in the support of cancer patient in Uganda and their needs must also be attended to by embedding them within care, prevention, and control programs63. By attending to needs beyond the individual patient, this will alleviate the overall burden associated with cervical cancer. Future research With respect to access, the referral system and limited resources continue to be significant challenges for patients seeking cancer care. Further research on health system structure and financing, as well as continuous government support are needed to optimize cancer care delivery and address major structural barriers. Moreover, sociocultural barriers to access must also be addressed. In this study, women also described negative attitudes as preventing them from receiving support from those individuals. While research on attitudes towards cervical cancer and cervical cancer-related health messaging has often targeted women, men have also expressed willingness to support but have limited knowledge about the disease and its prevention101. Support from male partners has been demonstrated to facilitate uptake of reproductive health services, yet there is little research on their perspectives in Africa101. Further research on male perspectives on cervical cancer in Uganda would illuminate new opportunities in addressing sociocultural barriers and ultimately empower women to access supports. 74 There are impacts on the entire family unit when a woman is diagnosed with cervical cancer, and this is particularly notable among children. Women described impacts on children such as interruptions to their education and increased caregiving burden which is consistent with previous research59. However, there is currently little information on children’s experiences with their mothers or parental figures being diagnosed with cancer. Future research may seek to understand this issue from children’s perspective, given the demonstrated impacts on their lives. It may also be important to investigate whether these impacts are gendered. The unpaid care burden has previously been demonstrated to be largely placed on women and it is crucial to identify if this is also the case for children who provide care to women with cervical cancer. Furthermore in Uganda, the proportion of females with no formal education was 16.1% which was nearly double that of males at 8.2%27. Since interruptions to school were also described, it is important to know whether girls are withdrawn from school at the same rate as boys, and whether it be due to financial challenges and/or caregiving duties. Much attention has been given to the elimination of cervical cancer since the WHO’s launch of the Cervical Cancer Elimination Initiative in November 202011. Following the WHO’s initiative, the Uganda Ministry of Health’s three pronged approached is largely focused on prevention; 102. However, addressing the demonstrated widespread impacts to women, children, and the family is equally as important and will in turn support prevention efforts. This is a complex issue impacted factors at every level, with widespread consequences beyond the individual patient. Further work is needed to empower the voices of those most greatly impacted. Since cervical cancer is a disease that directly impacts women, there are conspicuous gendered impacts; there may be however, more inconspicuous gendered indirect impacts that warrant further investigation. Unequal power dynamics between men and women in households, different 75 paid and unpaid labour divisions, and gender disparities in educational attainment are examples of the gender gap which both have impacts to, and are impacted by women’s cervical cancer experience. Individual-level supports will alleviate the burdens associated with a cervical cancer diagnosis however, institutional and systems-levels changes are needed to create long-lasting positive change. 4.3 Strengths and Limitations The methodological design of the study is a major strength of the study. The nature of the research objective, to describe and understand the experiences of women with cervical cancer and their perceived social impacts, is most appropriately explored using qualitative methods. The employment of semi-structured interviews provided some direction for the overall topic of the conversations but was flexible enough to allow participants to share things about their experience that were most significant and meaningful to them. This is important because the hermeneutic phenomenological approach aims to interpret participant’s interpretations of their own experiences. This approach recognizes the subjectivity and existence of multiple realities during this co-construction of knowledge65,72. Thus, while we were able to explore participants’ experiences in-depth, their experiences are not representative of all women’s experiences and not meant to be generalized. However, this does not preclude the data from being transferrable to similar contexts as it is underpinned by the same epistemological assumptions103. Furthermore, the stratified purposeful sampling helped select a sample that was demographically diverse, allowing us to explore if and how these demographic characteristics may have impacted women’s experiences, therefore enriching our understanding of the phenomenon and illuminating future research priorities. While the methodological design of the study was a major strength, a potential limitation was that the recruitment strategy restricted the 76 sample to those who were already accessing cervical cancer treatment at the UCI and may not have captured the experiences of those who were unable to overcome the barriers to accessing cancer care. Offering multiple local languages in addition to English as an option for the qualitative interviews reduced barriers to participation in the study and allowed us to include a more diverse range of perspectives. The vast majority of participants completed the interview in a language that was not English (Luganda or Runyankole/Rutooro), which may have enabled them to express their experiences more accurately and authentically. This also highlights the importance offering the option of completing the interviews in multiple local languages as it did not limit our sample to participants who were fluent in English. While it is possible that some meanings were lost in translation, methodological precautions were taken to ensure fidelity of the translation. Independent checking of the translated transcripts, collaborations between the UCI team members throughout the data analysis process, as well as the adapted member-checking step, helped to ensure fidelity of meanings and appropriateness of the interpretations of the data, thus enhancing rigor and reliability. Due to the sensitive nature of the topic, there is a risk for social desirability bias whereby participants describe themselves in a more positive nature that is more socially appropriate, rather than responding truthfully104. While there is such risk of response bias with qualitative interviews, it was mitigated by providing a private location for participants to respond and framing the questions in such an open-ended manner that encouraged conversation instead of interrogation. The interviewer being a female UCI nurse who is familiar with the local context and subject matter may have also helped participants feel more comfortable to share their true experiences, although the familiarity may also affect the authenticity of participant’s responses. 77 Since I was not involved in the data collection process and not fluent in Luganda or Runyankole/Rutooro, there may be additional contextual nuances that may have been missed. This was mitigated by continuous conversations with the UCI team members who helped ensure contextual appropriateness of the interpretations. However, as a Canadian researcher with no lived experience with cervical cancer or in Uganda, I would generally be considered an outsider; however, my experience as a woman may better enable me to identify with the participants who were also women. The inside and outside status challenges and strengths have been largely explored as a dichotomy, but eclipsed by the overall “ability to be open, authentic, honest, deeply interested in the experience of one's research participants, and committed to accurately and adequately representing their experience”105. Constant awareness of both the strengths and challenges of insider/outsider status in relation to my positionality through the reflexive processes helped to better position me as a co-constructor of knowledge alongside participants. 4.4 Conclusion Cervical cancer has a multitude of social impacts on women in Uganda, affecting relationships with friends and family, work and income, household roles, caregiving responsibilities, impacting children’s education, as well as financial and non-financial support. While women had varying experiences, the overall impacts were negative and widespread. Women’s cervical cancer had an impact on the entire household, with the burden often shared by those who cared for her. These caregivers included her children, husband, as well as other family members. Furthermore, the impacts on the household, namely financial challenges, often impacted her children’s education. Further investigation on gendered impacts on the participant as well as her children is warranted given the gendered nature of the disease as well as existing gender inequalities. Moreover, system-wide changes addressing structural and sociocultural 78 barriers are needed to support women afflicted with cervical cancer in accessing care. Our findings demonstrate the urgent need for greater resources to support women and their families affected by cervical cancer, as well as macro-level changes to mitigate the barriers that exacerbate the negative impacts of the disease. Our findings also contribute evidence to the Uganda Ministry of Health’s commitment to controlling cervical cancer. This in turn will support the WHO’s global initiative to eliminating cervical cancer as a public health problem. It is with this hope that women and their families in Uganda and worldwide will no longer suffer from the various devastating impacts of cervical cancer. 79 References 1. Wang Y, Wang J. 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Changes to work and income Changes to work and income- self Description of own different work patterns including frequency, tasks, cessation that may have altered amount/method of income. Changes to work and income -others Description of other’s (including family, friends, etc.) different work patterns including frequency, tasks, cessation that may have altered amount/method of income. Children’s school interruptions Descriptions of pauses or stoppages in children's education related to their mother’s cervical cancer diagnosis. Fear and distress Fear and distress Reports of feelings of fear, worries, and/or sadness due to one’s cervical cancer. Children’s fear and distress Reports of their children being worried, and/or sad due to their mother’s cervical cancer. Financial challenges Descriptions of insufficient money and/or difficulties related to money. Faith References to God and/or mentions of religious activities. Household roles Descriptions of changes to household roles including division of domestic labour and household chores among household members. Misconceptions Statements/beliefs and/or descriptions of statements/beliefs from others about cancer that are inaccurate. Non-disclosure Non-disclosure to children Reports of not telling children about their cancer diagnosis or keeping it a secret from them. 89 Non-disclosure to friends Reports of not telling their friends about their cancer diagnosis or keeping it a secret from them. Non-disclosure to partner Reports of not telling their partner about their cancer diagnosis or keeping it a secret from them. Non-disclosure to family Reports of not telling their family members (other than children/partner) about their cancer diagnosis or keeping it a secret from them. Stigma Descriptions of negative statements, beliefs, or attitudes related to cancer/cervical cancer from others. Support (source) Support from children Descriptions of physical, financial, and/or emotional support from their children related to their cervical cancer diagnosis and/or treatment. Support from family Descriptions of physical, financial, and/or emotional support from their family members (other than children and partner) related to their cervical cancer diagnosis and/or treatment. Support from friends Descriptions of physical, financial, and/or emotional support from their friends related to their cervical cancer diagnosis and/or treatment. Support from partner Descriptions of physical, financial, and/or emotional support from their partner related to their cervical cancer diagnosis and/or treatment. Support (type) Non-financial support Descriptions of emotional, moral, or physical support from others. Financial support Descriptions of financial support from others, including acts of giving or lending money.
Thesis/Dissertation
eng
Population and Public Health
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Ogilvie, Gina
The social impact of cervical cancer on women and children in Uganda
Text