Caring for Children With Life-Limiting Illness in Bloemfontein, South Africa: Challenging the Assumptions of the 'Good Death'.


Journal

Omega
ISSN: 1541-3764
Titre abrégé: Omega (Westport)
Pays: United States
ID NLM: 1272106

Informations de publication

Date de publication:
Jun 2022
Historique:
pubmed: 25 7 2020
medline: 11 6 2022
entrez: 25 7 2020
Statut: ppublish

Résumé

Theories of good death focused on acceptance, control, and meaning-making inform adult palliative care in high-resource settings. As children's palliative and hospice care (CPHC) develops in resource-limited settings, critical conceptualisations of a good death for children across these diverse settings are unknown. Assessed against high-resource setting tenets of good death from carer perspectives, results suggest: carer agency is limited; advanced discussion of death does not occur; distress results from multiple burdens; basic survival is prioritised; physical pain is not an emphasised experience; and carers publicly accept death quickly while private grief continues. Hegemonic conceptions of 'good death' for children do not occur in contexts where agency is constrained and discussing death is taboo, limiting open discussion, acceptance, and control of dying experiences. Alternate forms of discourse and good death could still occur. Critical, grounded conceptualisations of good death in individual resource-limited settings should occur in advance of CPHC development to effectively relieve expansive suffering in these contexts.

Identifiants

pubmed: 32703072
doi: 10.1177/0030222820944099
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

317-344

Auteurs

Callie Daniels-Howell (C)

Institute for Global Health,University College London, UK.

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Classifications MeSH