Being the other child - A systematic review on the quality of life and mental health of siblings of children with rare diseases.
Parent stress, not disease type, drives sibling mental-health problems in rare-disease families.
01Research in Context
What this study did
Boettcher et al. (2024) looked at every paper they could find on brothers and sisters of kids with rare diseases. They wanted to know how these siblings feel and how healthy their minds are.
They pulled data from many studies and compared the siblings to typical kids. They also checked if the sick child's diagnosis or the parents' stress mattered most.
What they found
Most siblings scored lower on quality-of-life and mental-health tests than typical kids. Yet the results were mixed; some siblings did fine.
The big surprise: the parents' stress level, not the disease severity, best predicted how the sibling felt.
How this fits with other research
Giallo et al. (2006) already showed that parent and family factors predict sibling adjustment better than the sibling's own coping skills. Johannes confirms this in rare diseases.
Dumont et al. (2014) looked like they disagreed; after they accounted for family income, most wellbeing gaps between siblings vanished. The twist: they studied common disabilities, not rare diseases. Rare diseases often bring extra financial and care burdens, so parent stress stays high.
Kirchhofer et al. (2025) tested a short group program for siblings and parents. Small gains appeared, backing the idea that lowering parent stress helps siblings feel better.
Why it matters
You can stop hunting for the "riskiest" rare diagnosis. Instead, screen for parent stress and family routines. When stress is high, offer parent support, respite care, or sibling groups. One hour easing Mom or Dad may do more for the sibling than ten hours of child-only therapy.
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02At a glance
03Original abstract
BACKGROUND: Siblings of children with rare diseases play a crucial yet often overlooked role in the family dynamic and their sibling's illness experience. This systematic review aims to synthesize and evaluate existing research on the Quality of Life (QoL) and mental health outcomes of siblings in this unique context. METHODS: We performed a systematic literature search in six databases, including quantitative studies on siblings of children with rare diseases. A total of 37 reports (34 studies) met the inclusion criteria. Siblings' QoL and mental health were compared to normative samples and their siblings with a rare disease. Risk factors for siblings' QoL and mental health were systematically investigated. Moreover, methodological quality and risk of bias were analyzed. RESULTS: The findings revealed that siblings of children with rare diseases experience reduced QoL and mental health compared to norm data, although results have been mixed. Psychosocial risk factors like parental family stress factors, compared to disease-specific risk factors, play a particular role in the QoL and mental health of siblings of children with rare diseases. CONCLUSION: Healthcare providers should consider and address the potential psychosocial impact on QoL and mental health in siblings of children with rare diseases. Additionally, opportunities to bridge existing research gaps and suggestions for advancing theory-driven research in this area will be discussed.
Research in developmental disabilities, 2024 · doi:10.1016/j.ridd.2024.104868