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

Title

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

Creator

Daniels-Howell C

Publisher

Omega

Date

2020

Subject

child health; good death; hospice; palliative care; South Africa

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

September 2020 List

Collection

Citation

Daniels-Howell C, “Caring for Children With Life-Limiting Illness in Bloemfontein, South Africa: Challenging the Assumptions of the 'Good Death',” Pediatric Palliative Care Library, accessed July 31, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17196.

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