Living with the threat of losing a child : Parents' experiences of the transplantation process with a severely ill child who received stem cells from a sibling
(2024) In Journal of Pediatric Nursing 77. p.495-502- Abstract
Purpose: When a child needs a hematopoietic stem cell transplant, the seriousness of the child's illness is highlighted. The purpose of this study was to explore parents' experiences of the transplantation process when two children in the family are involved, one severely ill child as the recipient and the other as the donor. Methods: In this qualitative study, interviews were conducted with 18 parents of 13 healthy minor donors after successful stem cell transplants. Qualitative content analysis was used to explore parents' experiences. Findings: The parents described they were living with the threat of losing a child. They lived with an uncertain future as they were confronted with life-changing information. Whether the ill child... (More)
Purpose: When a child needs a hematopoietic stem cell transplant, the seriousness of the child's illness is highlighted. The purpose of this study was to explore parents' experiences of the transplantation process when two children in the family are involved, one severely ill child as the recipient and the other as the donor. Methods: In this qualitative study, interviews were conducted with 18 parents of 13 healthy minor donors after successful stem cell transplants. Qualitative content analysis was used to explore parents' experiences. Findings: The parents described they were living with the threat of losing a child. They lived with an uncertain future as they were confronted with life-changing information. Whether the ill child would survive or not could not be predicted; thus, parents had to endure unpredictability, and to cope with this they chose to focus on positives. Finally, the parents managed family life in the midst of chaos, felt an inadequacy and a perception that the family became a fragmented although close team during hospital stays. They expressed a need for both tangible and emotional support. Conclusions: When a child needs a stem cell transplant, the parents feel inadequate to their healthy children including the donating child. It is obvious that they experience an uncertain future and struggle to keep the family together amid the chaos. Practice implications: Considering these results, psychosocial support should be mandatory for parents in connection with pediatric HSCT, to enable a process where parents can prepare for the outcome, whether successful or not.
(Less)
- author
- Rinaldo, Carina ; Stenmarker, Margaretha ; Øra, Ingrid LU and Pergert, Pernilla
- organization
- publishing date
- 2024-07-01
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Adolescent, Child, Donation, Experience, Parent, Stem cell transplantation
- in
- Journal of Pediatric Nursing
- volume
- 77
- pages
- 495 - 502
- publisher
- Elsevier
- external identifiers
-
- pmid:38762421
- scopus:85194184864
- ISSN
- 0882-5963
- DOI
- 10.1016/j.pedn.2024.05.015
- language
- English
- LU publication?
- yes
- additional info
- Publisher Copyright: © 2024 The Authors
- id
- 87d96c6f-6e26-47fe-9ec2-c25020972a46
- date added to LUP
- 2024-08-30 05:38:30
- date last changed
- 2024-08-30 06:56:27
@article{87d96c6f-6e26-47fe-9ec2-c25020972a46,
abstract = {{<p>Purpose: When a child needs a hematopoietic stem cell transplant, the seriousness of the child's illness is highlighted. The purpose of this study was to explore parents' experiences of the transplantation process when two children in the family are involved, one severely ill child as the recipient and the other as the donor. Methods: In this qualitative study, interviews were conducted with 18 parents of 13 healthy minor donors after successful stem cell transplants. Qualitative content analysis was used to explore parents' experiences. Findings: The parents described they were living with the threat of losing a child. They lived with an uncertain future as they were confronted with life-changing information. Whether the ill child would survive or not could not be predicted; thus, parents had to endure unpredictability, and to cope with this they chose to focus on positives. Finally, the parents managed family life in the midst of chaos, felt an inadequacy and a perception that the family became a fragmented although close team during hospital stays. They expressed a need for both tangible and emotional support. Conclusions: When a child needs a stem cell transplant, the parents feel inadequate to their healthy children including the donating child. It is obvious that they experience an uncertain future and struggle to keep the family together amid the chaos. Practice implications: Considering these results, psychosocial support should be mandatory for parents in connection with pediatric HSCT, to enable a process where parents can prepare for the outcome, whether successful or not.</p>}},
author = {{Rinaldo, Carina and Stenmarker, Margaretha and Øra, Ingrid and Pergert, Pernilla}},
issn = {{0882-5963}},
keywords = {{Adolescent; Child; Donation; Experience; Parent; Stem cell transplantation}},
language = {{eng}},
month = {{07}},
pages = {{495--502}},
publisher = {{Elsevier}},
series = {{Journal of Pediatric Nursing}},
title = {{Living with the threat of losing a child : Parents' experiences of the transplantation process with a severely ill child who received stem cells from a sibling}},
url = {{http://dx.doi.org/10.1016/j.pedn.2024.05.015}},
doi = {{10.1016/j.pedn.2024.05.015}},
volume = {{77}},
year = {{2024}},
}