“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