Peer-reviewed article

Experiences during childhood and adolescence among siblings of children with childhood-onset chronic illness.

Kikudome K, Niinomi K, Kaneko T, Mihira H, Higaki T · 9 May 2026

Abstract

Background It remains unclear what experiences siblings of children with childhood-onset chronic illnesses have across settings such as home, school, and healthcare. Although these experiences can have long-term psychosocial effects, how they are interpreted in adulthood is not yet well understood. Aim This study examined the experiences of adult siblings during their school-age and adolescent years, as well as how they interpreted and made sense of those experiences. Methods A qualitative descriptive study using criterion-based purposive sampling was conducted with 14 adult siblings recruited through support organizations. Data were collected through in-depth semi-structured interviews and analyzed using inductive content analysis. Results Four main findings emerged: (1) Siblings often suppressed their own needs and assumed responsibilities within the family, (2) School relationships functioned as a space where they could maintain a sense of normalcy, (3) Interactions with people outside the family, such as healthcare professionals and romantic partners, influenced their perceptions of the illness and their own roles, and (4) In adulthood, participants reinterpreted past experiences, sometimes leading to acceptance, personal growth, or engagement in supportive roles. Implications It is important to understand that siblings have unique experiences across various contexts, and recognizing these experiences as part of an ongoing meaning-making process highlights the need for pediatric nursing support beyond childhood and emphasizes the importance of considering siblings' perspectives across diverse life settings.