A descriptive qualitative study exploring family dynamics in end-of-life care

Background: The extent of involvement of family caregivers in Ghana ranges from giving physical care and emotional support to making medical decisions and liaising with healthcare professionals. Methods: This study used a descriptive exploratory qualitative methodology grounded in ethnographic theory. Data were collected through observations and interviews with 20 unpaid informal caregivers following a purposeful sampling recruitment. Semi-structured in-depth interviews, lasting 45 to 80 minutes, were conducted at home and on hospital premises, focusing on caregivers’ involvement and the support services they received. Data were transcribed, translated and analysed using thematic analysis principles. Results: The study found that caregivers were predominately female. Male caregivers were typically brothers, spouses or sons. Two primary themes emerged: the extent of caregiver involvement and the reasons for family involvement. Caregivers, despite their central roles in decision-making and extensive physical and emotional support, faced communication challenges with healthcare teams. These challenges, coupled with their moral and family obligations, underscore the complexity of their role. Conclusion: The findings highlight the critical role of family caregivers in the care of terminally ill patients and the diverse motivations behind their involvement. It is imperative that healthcare professionals, researchers and policymakers, recognise and support the vital contributions of family caregivers. This recognition and support are not only essential for improving palliative care outcomes, but also for ensuring the well-being of these caregivers.