Cultural Values, Preferences and Goals and of End of Life Care of Family Members of Patients with Life-Limiting Illness in Kumasi, Ghana: A Community-Based Study (TH370C)

Abstract

•Recognize the Importance and relevance of culture to EOL care.•Describe CBPR and focus group methods.•Examine what patients with serious illness in Ghanaian hospital face. Understanding patient and family cultural values, preferences and goals of care in patients with life-threatening illness is the first step in ensuring the provision of goal-concordant care. Palliative care (PC) programs are at their infancy in Ghana, with three PC physicians and four nurses at Komfo Anoyke Teaching Hospital (KATH) in Kumasi, a city of 1.5m people. Ghana has a collectivist culture in which families and communities, not the individual, is central. Little is known about End of Life (EoL) care values, care preferences and goals of care. To gain an understanding of cultural values, preferences and goals of care of family caregivers of patients who had received EoL care at KATH. Community Based Participatory Research served as the study's guiding principles. An 8-member Community Advisory Group advised on focus group implementation including meeting site, topics of discussion, ethical considerations, and recruitment methods. The focus group included nine family members and focused on care received by their loved one during their recent serious illness. This session was recorded, transcribed and analyzed using a systematic thematic analysis. Emergent themes included problems related to healthcare system: unreliable access to doctors, high cost of care (self-pay is the main method), challenges of getting diagnosed, pain and symptom burden, and poor doctor-patient-caregiver communication. Three cultural values emerged: caregivers' pivotal role in caring for loved ones; discussion of prognosis requiring involvement of others, and key role of God/faith in illness and dying processes. This pilot study provided PC physicians insight into values, preferences and goals of care, and provided community caregivers the opportunity to participate at the start of designing a culturally-based EOL care program.