Anxiety, Depression and Stress in Parents and Siblings of People Who Have Prader-Willi Syndrome: Morbidity Prevalence and Mitigating Factors.
Kristina Micallef Pulè, Brian M Hughes
PMID 39970479WHAT IT FOUND
Parents of people with Prader-Willi syndrome report high anxiety, depression, and stress, especially when the person lives at home.
Family cohesion buffers these symptoms in parents and siblings, while social support from friends helps reduce parental depression.
Key findings
01Over half of parents reported borderline or abnormal levels of anxiety and depression, and their stress scores were markedly higher than population norms.
02Higher family cohesion was associated with lower anxiety, depression, and stress in parents, and with lower PTSD symptoms in siblings.
03Parents whose child with Prader-Willi syndrome lived in the family home reported significantly higher depression scores than those whose child lived away.
STILL TO COME
How it was doneWhat they found
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What it does not show
All data were self-reported by parents, which introduces subjectivity and potential bias in how stress and symptoms are described. Sibling PTSD symptoms were assessed via parent proxy rather than direct sibling report, meaning the scores may reflect the parent's own well-being or perception rather than the sibling's actual experience. The study design is cross-sectional, so it can identify associations between family cohesion and mental health but cannot prove that improving cohesion causes better outcomes. Participants were required to communicate in English, which may limit the generalisability of findings to non-English speaking families in the 31 countries represented. The sample was recruited through support organisations, which may over-represent families already engaged with services or experiencing higher distress.
Declared interests
One author (B.M.H.) is a parent of an individual with Prader-Willi syndrome. The authors declared no other conflicts of interest.
The easy way to misread this
Do not assume that increasing family cohesion will directly reduce parental anxiety or sibling PTSD. The study shows an association, not a causal link, and the direction of effect is unclear: parents with lower stress may simply be better able to foster cohesion. Additionally, sibling data were proxy-reported by parents, so the findings reflect the parent's perspective rather than the sibling's independent experience.