Yakubu Salifu1, Kathryn Almack2, Glenys Caswell3. 1. International Observatory on End of Life Care, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, Lancashire, UK. 2. Communities, Young People and Family Lives, Centre for Research in Public Health and Community Care, School of Health and Social Work, University of Hertfordshire, Hatfield, Hertfordshire, UK. 3. Nottingham Centre for the Advancement of Research into Supportive, Palliative and End of Life Care, Faculty of Medicine & Health Sciences, University of Nottingham, Nottingham, UK.
Abstract
BACKGROUND: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. AIM: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. DESIGN: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points. PARTICIPANTS: Men living with advanced prostate cancer (n = 23), family caregivers (n = 23), healthcare professionals (n = 12). FINDINGS: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient's 'doctor' at home-assessing patient's symptoms, administering drugs, and providing hands-on care. CONCLUSION: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.
BACKGROUND: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. AIM: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. DESIGN: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points. PARTICIPANTS: Men living with advanced prostate cancer (n = 23), family caregivers (n = 23), healthcare professionals (n = 12). FINDINGS:Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient's 'doctor' at home-assessing patient's symptoms, administering drugs, and providing hands-on care. CONCLUSION: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.
Entities:
Keywords:
Family caregiver; Ghana; advanced prostate cancer; homecare; long-term care; palliative care; qualitative research
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