‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting

• Published in: Palliative medicine 2021-01, Vol.35 (1), p.97-108
• Main Authors: Salifu, Yakubu, Almack, Kathryn, Caswell, Glenys
• Format: Article
• Language: English
• Subjects: Access; Caregivers; Caregiving; Challenges; Cost analysis; Drugs; End of life decisions; Health care; Home based; Home Care Services; Home health care; Hospice and Palliative Care Nursing; Hospice care; Humans; Independent living; Male; Medical personnel; Men; Original; Palliative Care; Physicians; Prostate; Prostate cancer; Qualitative Research; Side effects; Spouses; Symptoms
• ISSN: 0269-2163; 1477-030X; 1477-030X
• DOI: 10.1177/0269216320951107

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.