Salifu, Yakubu
(2019)
Exploring home-based supportive and palliative care for men living with advanced-stage prostate cancer in a resource-limited Sub-Saharan African country (Ghana).
PhD thesis, University of Nottingham.
Abstract
Background
The development of palliative care and research into palliative care are burgeoning fields in global south resource-poor countries. Due to inadequate institutional-based palliative care or health care institutions being stretched for resources, home-based care becomes an indispensable option. Home-based informal family caregiving is an under-explored area in Africa. In Ghana, PWAPC are mostly cared for in the home context. This study explored health care professionals, patients’ and caregivers’ experience of living with and or caring for PWAPC in a resource-poor setting where the bulk and responsibility for care is predominantly provided within the informal sector.
Objectives:
1. To explore the experiences of PWAPC about home-based care: what support and care they receive, and to identify if/how care could be improved.
2. To examine the experiences and perceptions of family caregivers of PWAPC about providing care (for instance coordinating care, providing the care responsibility with others, provision of medical care, how they learn to care, how the care changes over time as the patient health deteriorates, and how they think about their health).
3. To understand how caregivers manage their role and the challenges this presents in the provision of emotional and practical care.
4. To explore the experiences of healthcare professionals (HCP) on the home-based care of PWAPC and their families and finding out what HCPs think the challenges are for PWAPC and family caregivers.
Methods
This study was multiple perspectives and multi-method qualitative study using individual interviews, joint interviews, and focus group discussion. Repeat interviews were conducted with PWAPC and their family caregivers across a period of up to 6 months usually two months apart. A total of 23 PWAPC, 23 family caregivers, and 12 healthcare professionals yielded 68 interviews to get a holistic understanding of such care. Four patients were lost to follow-up during the second phase of the interview due to death. The healthcare professionals participated in mainly focus group discussion.
The data was recorded and transcribed. An inductive thematic analysis approach was used to identify commonly recurring themes developed from within the data. Links were made between findings and theories and what these mean for practice.
Findings
Living with and or caring for a PWAPC could present challenges and disruption of family lives; this requires continued support and readjustment to cope. The study highlights three main themes from the analysis and synthesis of all the interviews. These include:
• Managing illness in a resource-limited context. This consist of the high cost of treatment and day to day care, combining care with paid work, mobilising resource for care in a rural setting, unavailability of formal palliative care services to the home, and the gaps (physical and practical needs, psychosexual needs, and information needs) that exist in care provision.
• Family caregiving. Family caregiving involves dealing with practical and emotional issues about home care, how to navigate the care at home usually unassisted by professionals, pain management, and the disruption in the family unit following prostate cancer. It also shows the coping strategies adopted to deal with challenges such as the spirit of reciprocity, compassionate informal networks, having faith in God, and having positive thinking about life.
• Managing prostate cancer stigma, and dealing with prostate cancer in the context of masculinity. Prostate cancer stigma is multi-layered: prostate cancer as a stigmatising disease, shame associated with prostate cancer symptoms and stigma of some treatment methods for prostate cancer such as removal of the testes. Prostate cancer threatens masculinity physically, socially, emotionally and sexually and this has implication for men’s health and wellbeing.
Conclusion
This study adds to the understanding of living with advanced prostate cancer within a resource-limited and non-Western setting; providing both nursing and sociological insights. The research indicates some flop in home-based palliative care and the ineffective collaboration between caregivers and healthcare professionals for home-based care due to lack of resources and policy direction. The need for palliative care coordination, resources, and training for patients and their family caregivers is thus evident. Family caregivers in this study demonstrated a strong sense of responsibility and were motivated to provide care underpinned by cultural beliefs that frown upon the desertion of the sick. This finding is unique and different from Western societies where there are more resources to support family caregivers and more recognition of their needs.
The findings highlight the need for the urgent development of policies/resources and health promotion. There is a need to increase awareness of prostate cancer with the aim to reduce the stigma attached to the disease and its symptoms. The health and social care policies and health promotion should take into account the existing informal social networks, culturally appropriate care and the enormous contribution of family caregivers, who provide pivotal support for the care of PWAPC.
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