Feasibility of a remote-care-system-based sibling peer event for young carers: a longitudinal pilot study.

Abstract

Siblings of children with chronic conditions or disabilities (young carers) often take on caregiving roles yet remain largely outside family-support frameworks, and intervention research targeting them is scarce, particularly in Japan. This prospective longitudinal pilot study examined the feasibility of delivering an in-person sibling peer event (a one-day group gathering combining recreational activities, peer interaction, activities facilitating emotional expression, and crafts) embedded within a continuously operating online remote care system (RCS) and explored preliminary outcome patterns, rather than testing efficacy. Twenty children participated; because one sibling pair shared a single proxy report, they yielded 19 analysis cases (hereafter, 19 cases), assessed before the event (T0), immediately after (T1), and 3 (T2) and 6 (T3) months later, within a feasibility framework and using the Family Empowerment Scale, the EQ-5D (utility and the 0-100 visual analog scale [VAS]), the short Japanese Zarit Burden Interview (J-ZBI_8), and a social resource utilization item. Recruitment was open with no eligibility restrictions; 20 of 22 applicants attended (participation 91%), and no adverse events were reported at any assessment; acceptability was high, with all children rating the event enjoyable and 94.7% wishing to attend again. Questionnaire data were available for 16, 18, 10, and 12 of 19 cases at T0-T3, illustrating the difficulty of longitudinal follow-up. Outcomes were respondent-level: parents provided proxy reports (10 cases) and siblings self-reports (9 cases), so scores index different constructs and are summarized accordingly rather than as a single pooled measure. Changes in quality of life were small, non-significant, and concentrated among parent-proxy reports; because two non-comparable EQ-5D forms were used, utilities are reported descriptively only. As an exploratory signal warranting monitoring rather than a safety concern, self- and proxy-reported burden scores rose immediately after the event and returned toward baseline by 6 months. This pilot provides preliminary feasibility signals for embedding an in-person sibling event within continuous online support and indicates the need for controlled studies to examine the efficacy of such in-person events for siblings, while highlighting measurement and retention challenges to address in future trials.