“What about me?”: lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition

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.

KEYWORDS:

• Attention
• child
• life-limiting condition
• life-threatening condition
• lived experience
• paediatric palliative care
• sibling

Acknowledgments

We are very grateful to the siblings who generously shared their experiences in this study. We thank the user organizations and hospitals for their efforts in recruiting participants.

Disclosure statement

No potential conflict of interest was reported by the authors.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

OsloMet funded the study.

Notes on contributors

Trine Brun Kittelsen

Trine Brun Kittelsen, OTR, MSc is a PhD candidate at OsloMet. She has 20 years of experience as a paediatric occupational therapist in habilitation and municipal health services.

Charlotte Castor

Charlotte Castor, PhD, is an associate senior lecturer at Lunds University. She has 25 years of clinical nursing experience and is a researcher within home care service for ill children and PPC.

Anja Lee

Anja Lee, PhD, MD, has been a paediatrician for many years and is currently leading the first Norwegian PPC team, which was established in 2019.

Lisbeth Gravdal Kvarme

Lisbeth Gravdal Kvarme, PhD, is a professor of public health nursing at OsloMet. She has clinical experience in a hospital for severely ill children.

Anette Winger

Anette Winger, PhD, is a professor in palliative care for children and adolescents at OsloMet. She is an experienced paediatric nurse, educator, and researcher in paediatric palliative care. AW is the leader of the CHIP research network.