End-of-life palliative home care for children with cancer : A qualitative study on parents’ experiences
(2023) In Scandinavian Journal of Caring Sciences 37(4). p.917-926- Abstract
Background: There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents’ experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. Methods: The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and... (More)
Background: There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents’ experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. Methods: The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings. Results: Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory. Conclusion: End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.
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- author
- Hansson, Helena LU ; Björk, Maria LU ; Santacroce, Sheila Judge and Raunkiær, Mette LU
- organization
- publishing date
- 2023
- type
- Contribution to journal
- publication status
- published
- subject
- in
- Scandinavian Journal of Caring Sciences
- volume
- 37
- issue
- 4
- pages
- 917 - 926
- publisher
- Wiley-Blackwell
- external identifiers
-
- scopus:85123433651
- pmid:35072276
- ISSN
- 0283-9318
- DOI
- 10.1111/scs.13066
- language
- English
- LU publication?
- yes
- id
- 6c7f8aa0-e58d-4cbd-b404-86b954f59b4e
- date added to LUP
- 2022-04-08 15:13:51
- date last changed
- 2024-06-10 05:34:09
@article{6c7f8aa0-e58d-4cbd-b404-86b954f59b4e,
abstract = {{<p>Background: There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents’ experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. Methods: The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings. Results: Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory. Conclusion: End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.</p>}},
author = {{Hansson, Helena and Björk, Maria and Santacroce, Sheila Judge and Raunkiær, Mette}},
issn = {{0283-9318}},
language = {{eng}},
number = {{4}},
pages = {{917--926}},
publisher = {{Wiley-Blackwell}},
series = {{Scandinavian Journal of Caring Sciences}},
title = {{End-of-life palliative home care for children with cancer : A qualitative study on parents’ experiences}},
url = {{http://dx.doi.org/10.1111/scs.13066}},
doi = {{10.1111/scs.13066}},
volume = {{37}},
year = {{2023}},
}