Quality of life and research benefit and burden in siblings of children with life-limiting conditions: a prospective multicentre cohort study

BACKGROUND: Siblings of children suffering from a life-limiting condition (LLC) may experience impaired psychological and social well-being and strained family functioning. Due in part to concerns about research burden, evidence on siblings' quality of life (QoL) remains limited. This study aimed to examine longitudinal changes in QoL among well siblings of children with a (LLC) during the palliative care and bereavement phases, and to assess their perceived benefits and burdens of research participation. METHODOLOGY: This prospective multicentre cohort study was conducted within the SPhAERA project. Data were collected using paper-and-pencil questionnaires at predefined care and bereavement time points. QoL was assessed using the KIDSCREEN-52 instrument, and perceived research benefit and burden were measured using eight self-developed items. Analyses were primarily descriptive. Siblings aged 8-18 years were recruited from three Swiss University Children's hospitals between November 2019 and May 2022. RESULTS: Twelve siblings participated. QoL scores were above the Swiss normative values across all domains except psychological well-being. QoL varied over time in all participants. The median research burden score was 1.4 (scale from 0 to 10), and no consistent benefits or burdens were reported. CONCLUSIONS: Care for children with a (LLC) should include screening to identify siblings with low QoL and increased support needs. Further research is required to examine factors influencing QoL and its fluctuations across the palliative and bereavement phases, in order to inform targeted support strategies.