eprintid: 10141839
rev_number: 12
eprint_status: archive
userid: 608
dir: disk0/10/14/18/39
datestamp: 2022-01-12 12:58:55
lastmod: 2022-01-12 12:58:55
status_changed: 2022-01-12 12:58:55
type: article
metadata_visibility: show
creators_name: Daniels-Howell, C
title: Caring for Children With Life-Limiting Illness in Bloemfontein, South Africa: Challenging the Assumptions of the 'Good Death'
ispublished: inpress
divisions: UCL
divisions: B02
divisions: D01
keywords: South Africa, child health, good death, palliative care, hospice
note: This version is the author accepted manuscript. For information on re-use, please refer to the publisher's terms and conditions.
abstract: 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.
date: 2020-07-23
date_type: published
publisher: SAGE PUBLICATIONS INC
official_url: https://doi.org/10.1177/0030222820944099
oa_status: green
full_text_type: other
language: eng
primo: open
primo_central: open_green
verified: verified_manual
elements_id: 1908405
doi: 10.1177/0030222820944099
lyricists_name: Daniels-Howell, Callie
lyricists_id: CLDAN93
actors_name: Barczynska, Patrycja
actors_id: PBARC91
actors_role: owner
full_text_status: public
publication: Omega: Journal of Death and Dying
pages: 28
issn: 1541-3764
citation:        Daniels-Howell, C;      (2020)    Caring for Children With Life-Limiting Illness in Bloemfontein, South Africa: Challenging the Assumptions of the 'Good Death'.                   Omega: Journal of Death and Dying        10.1177/0030222820944099 <https://doi.org/10.1177/0030222820944099>.    (In press).    Green open access   
 
document_url: https://discovery.ucl.ac.uk/id/eprint/10141839/1/Daniels_Howell_Caring%20for%20Children%20With%20Life-Limiting%20Illness%20in%20Bloemfontein%20South%20Africa.pdf