Peer-reviewed article
Quality of life and research benefit and burden in siblings of children with life-limiting conditions: a prospective multicentre cohort study.
Gerber AK, Zimmermann K, Widler M, Simon M, Weid NV et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study followed siblings of children with life-limiting conditions in Swiss hospitals to understand how their quality of life changed over time during palliative care and bereavement. Siblings reported quality of life scores mostly in line with healthy peers, though psychological well-being was lower. The study found that siblings experienced minimal burden from participating in research, and care systems should screen siblings for support needs.
Key points
- Quality of life scores were above Swiss normative values in most domains, except for psychological well-being
- Quality of life varied over time in all twelve siblings studied
- The median research burden score was low at 1.4 on a scale of 0 to 10
- No consistent research benefits or burdens were reported across participants
- The study recommends screening siblings for low quality of life and targeted support strategies
Limitations
The sample size was very small (twelve siblings) from a single country, which limits the generalisability of findings. The study cannot tell us what specific factors cause quality of life fluctuations or what effective support interventions would work best for these siblings.
Abstract
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.