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.
(In press).
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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.
| Type: | Article |
|---|---|
| Title: | Caring for Children With Life-Limiting Illness in Bloemfontein, South Africa: Challenging the Assumptions of the 'Good Death' |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1177/0030222820944099 |
| Publisher version: | https://doi.org/10.1177/0030222820944099 |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher's terms and conditions. |
| Keywords: | South Africa, child health, good death, palliative care, hospice |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute for Global Health |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10141839 |
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| 2. |  China | 5 |
| 3. |  South Africa | 3 |
| 4. |  United Kingdom | 2 |
| 5. |  Germany | 2 |
| 6. |  Hong Kong | 1 |
| 7. |  Japan | 1 |
| 8. |  Ethiopia | 1 |
| 9. |  Australia | 1 |
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