‘I talk with mum because her mum needs care now.’ Having Family Conversations about End-of-Life Preferences - A Constructivist Grounded Theory of Living and Dying between Cultural Traditions in African and Caribbean Heritage Families

De Souza, Joanna and Walshe, Catherine and Salifu, Yakubu and Froggatt, Katherine (2025) ‘I talk with mum because her mum needs care now.’ Having Family Conversations about End-of-Life Preferences - A Constructivist Grounded Theory of Living and Dying between Cultural Traditions in African and Caribbean Heritage Families. PhD thesis, Lancaster University.

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Text (2025DESOUZAPhD)
2025DESOUZAPhD.pdf - Published Version
Available under License Creative Commons Attribution-NonCommercial-ShareAlike.
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Abstract

Evidence suggests that advance care planning family conversations rarely take place in ethnically diverse heritage communities. In our meta-ethnographic review, previous studies suggest conversations about end-of-life preferences between elders and their adult children do not happen for several reasons. Elders trust that family will take care of things without the need for a conversation; Adult children close such conversations to avoiding thinking about the death of their parent; and there is a frequent belief that a divine power like God will be in control at that time. However adult children in ethnically diverse communities feel burdened by being the end-of-life decision makers for their parents, and communication between families and professionals currently is poor. Although these phenomena have been explored in some communities these accounts have been mainly descriptive. The intent of this study was to develop a more theoretical understanding of the perspective’s family members have of what influences end-of-life conversations within African and Caribbean heritage families. The ontological perspective of constructivism, epistemological roots in relativism informed by Bourdieu’s theory of a concept of practice, are initially explored to try to make explicit the philosophies that underpin this research. As part of this exploration, a Rogerian concept analysis was conducted to critically trace the evolution of Bourdieu’s concept of hysteresis, in the experiences of people from minority ethnic heritage communities, engaging with palliative care at the end-of-life. Under-recognised symbolic violence results in social suffering in relation to some of the values and beliefs expected by providers of palliative care in advance care planning conversations around care preferences. When considering engagement with aspects of palliative care practice, care is needed to understand how many have been historically informed by a small number of cultural approaches. In the absence of an existing theoretical exploration of the complex phenomenon of African and Caribbean heritage community perspectives of family conversations around end-of-life preferences, Charmaz’s constructivist grounded theory was used as a methodological approach to create informative theory in this area.