Experiences and Support Needs of Siblings of Individuals With Prader-Willi Syndrome- Findings From a Two-Stage Qualitative Study.
Meghana Wadnerkar Kamble, Jen Dawe, Karen Bunning
PMID 40985314WHAT IT FOUND
Siblings of people with Prader-Willi syndrome describe feeling 'second place' and developing complex relationships with food, such as hiding hunger or feeling guilt.
Support needs shift with age: younger siblings seek advocacy, while older siblings need peer networks and specialist counselling.
Key findings
01Siblings frequently felt they received inequitable treatment and were placed 'second' behind the needs of their brother or sister with Prader-Willi syndrome.
02Food management practices deeply affected siblings' emotional relationships with food, leading to behaviours like hiding hunger, feeling guilt about eating, or developing sporadic eating habits.
03Support needs evolved across the lifespan: younger siblings engaged in advocacy, while older siblings prioritised connecting with peers in similar situations and accessing specialist mental health support.
STILL TO COME
How it was doneWhat they found
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What it does not show
The sample was small (19 participants) and lacked ethnic diversity, with only one sibling of British Asian origin. Stage 2 consensus findings were based only on older siblings and parents, so they cannot be directly applied to younger siblings. Most participants were female. Online interviews made it difficult to engage the youngest siblings and prevented facilitators from seeing visual cues.
Declared interests
The authors declared no conflicts of interest. Two authors had prior clinical experience working with individuals with Prader-Willi syndrome, and one had provided respite care.
The easy way to misread this
Do not assume these findings apply to all siblings or that the support needs identified by older participants are the same for younger children. The study did not include consensus data from the younger sibling groups, and the sample was small and predominantly female.
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