“What about me?” : lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition
(2024) In International Journal of Qualitative Studies on Health and Well-being 19(1).- Abstract
Background: There is a lack of knowledge regarding siblings’ experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings’ perspectives are often expressed through their parents and not by siblings themselves. Method: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3–29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen’s lifeexistentials. Results: One overall theme, “What about me?”, illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive... (More)
Background: There is a lack of knowledge regarding siblings’ experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings’ perspectives are often expressed through their parents and not by siblings themselves. Method: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3–29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen’s lifeexistentials. Results: One overall theme, “What about me?”, illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one’s own. Conclusion: The study revealed that siblings’ own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings’ needs.
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- author
- Kittelsen, Trine Brun ; Castor, Charlotte LU ; Lee, Anja ; Kvarme, Lisbeth Gravdal and Winger, Anette
- organization
- publishing date
- 2024
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Attention, child, life-limiting condition, life-threatening condition, lived experience, paediatric palliative care, sibling
- in
- International Journal of Qualitative Studies on Health and Well-being
- volume
- 19
- issue
- 1
- article number
- 2321645
- publisher
- Taylor & Francis
- external identifiers
-
- pmid:38404038
- scopus:85185936207
- ISSN
- 1748-2623
- DOI
- 10.1080/17482631.2024.2321645
- language
- English
- LU publication?
- yes
- id
- 0dffe015-2d1c-4101-a8ff-687cb2c023a4
- date added to LUP
- 2024-03-20 11:36:03
- date last changed
- 2024-04-17 11:03:58
@article{0dffe015-2d1c-4101-a8ff-687cb2c023a4,
abstract = {{<p>Background: There is a lack of knowledge regarding siblings’ experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings’ perspectives are often expressed through their parents and not by siblings themselves. Method: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3–29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen’s lifeexistentials. Results: One overall theme, “What about me?”, illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one’s own. Conclusion: The study revealed that siblings’ own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings’ needs.</p>}},
author = {{Kittelsen, Trine Brun and Castor, Charlotte and Lee, Anja and Kvarme, Lisbeth Gravdal and Winger, Anette}},
issn = {{1748-2623}},
keywords = {{Attention; child; life-limiting condition; life-threatening condition; lived experience; paediatric palliative care; sibling}},
language = {{eng}},
number = {{1}},
publisher = {{Taylor & Francis}},
series = {{International Journal of Qualitative Studies on Health and Well-being}},
title = {{“What about me?” : lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition}},
url = {{http://dx.doi.org/10.1080/17482631.2024.2321645}},
doi = {{10.1080/17482631.2024.2321645}},
volume = {{19}},
year = {{2024}},
}