Living and Dying between Cultural Traditions in African & Caribbean Heritage Families: A Constructivist Grounded Theory

Abstract

Background Ethnic differences influence end-of-life health behaviours and usage of palliative care. Advance care planning is not widely utilised in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics that underpin end-of-life conversations within families of African and Caribbean heritage, a voice not well represented in the current debate on improving end-of-life outcomes. Methods Using Charmaz’s constructivist grounded theory approach, a purposive sample of elders, adult children, and grandchildren of African and Caribbean Heritage were recruited. In-person and online focus groups were conducted, analysed using an inductive, reflexive comparative analysis process. Initial and axial coding facilitated the creation of categories, these categories were abstracted to constructs and used in theory construction. Results Elders (n = 4), adult children (n = 14), and adult grandchildren (n = 3) took part in 5 focus groups. A grounded theory of living and dying between cultural traditions in African and Caribbean heritage families was created with the following constructs: a) Preparing for death but not for dying b) Complexity in traditions crosses oceans c) Living and dying between cultures and traditions d) There is culture, gender and there is personality e) Watching the death of another prompts conversations. f) An experience of Hysteresis. Discussion Preparation for after-death processes is celebrated in African and Caribbean cultures resulting in early exposure and opportunities for discussion of these processes. Migration results in reforming of people’s habitus/ world views shaped by a mixing of cultures. Being in different geographical places impacts generational learning-by-watching of the dying process and decisions that need to be made. Conclusions Recognising the role of family and the impact of migration on the exposure of those family members to previous dying experiences is important. This can provide a more empathetic and insightful approach to partnership working between health care professionals and patients and families facing serious illness. A public health approach focused on enabling adult children to have better end of life conversations with their parents can inform the development of culturally competent palliative care.