How does community engagement evolve in different compassionate community contexts? A longitudinal comparative ethnographic research protocol

Lessard, Émilie; Marcoux, Isabelle; Daneault, Serge; Panaite, Andreea-Catalina; Jean, Lise; Talbot, Mélodie; Weil, Dale; Rouly, Ghislaine; Sallnow, Libby; Kellehear, Allan; Boivin, Antoine

doi:10.1177/26323524231168426

Cited by 5 publications

(1 citation statement)

References 27 publications

(51 reference statements)

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“…New relational and more individually nuanced models of palliative care are emerging with a focus on communities as sources of invaluable support [ 55 , 56 ]. For health care professionals working with people with deteriorating health conditions, the need to recognise the role of adult-children in end-of-life decision making, particularly in many African and Caribbean heritage families, is imperative.…”

Section: Discussionmentioning

confidence: 99%

Living and dying between cultural traditions in African & Caribbean Heritage families: a constructivist grounded theory

De Souza,

Gillett,

Salifu

et al. 2024

BMC Palliat Care

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Background Ethnic differences influence end-of-life health behaviours and use of palliative care services. Use of formal Advance care planning is not common 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. This is 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 and 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. The constructs are (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 African and Caribbean cultures celebrate preparation for after-death processes resulting in early exposure to 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 related decision making. Conclusions Recognising the impact of migration on the roles of different family members and 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 of minority ethic heritage facing serious illness. A public health approach focusing on enabling adult-children to have better end of life conversations with their parents can inform the development of culturally competent palliative care.

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Section: Discussionmentioning

confidence: 99%