"What About Me?": Lived Experiences of Siblings Living with a Brother or Sister with a Life-threatening or Life-limiting Condition

Overview

Journal Int J Qual Stud Health Well-being

Specialties Health Services
Public Health

Date 2024 Feb 26

PMID 38404038

Authors

Trine Brun Kittelsen

Charlotte Castor

Anja Lee

Lisbeth Gravdal Kvarme

Anette Winger

Affiliations

Soon will be listed here.

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 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.

Citing Articles

Important factors in municipality-based pediatric palliation from healthcare professionals' perspective: A qualitative study.

Skjaerseth K, Preminger N, Hauken M Palliat Care Soc Pract. 2025; 19:26323524241312915.

PMID: 39871883 PMC: 11770719. DOI: 10.1177/26323524241312915.

Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions-a qualitative study.

Kittelsen T, Castor C, Lee A, Kvarme L, Winger A Palliat Care Soc Pract. 2024; 18:26323524241301431.

PMID: 39618726 PMC: 11607763. DOI: 10.1177/26323524241301431.

It's about living a normal life: parents' quality of life when their child has a life-threatening or life-limiting condition - a qualitative study.

Kittelsen T, Lorentsen V, Castor C, Lee A, Kvarme L, Winger A BMC Palliat Care. 2024; 23(1):92.

PMID: 38589835 PMC: 11003040. DOI: 10.1186/s12904-024-01417-3.

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