A Pilot Randomized Controlled Trial of the Autism Mentorship Program.
Caregivers of people with Prader-Willi syndrome carry high global rates of depression, anxiety, and PTSD, yet closer family ties reduce their distress.
01Research in Context
What this study did
Manning et al. (2026) sent surveys to parents and brothers or sisters of people with Prader-Willi syndrome in many countries.
They asked how much depression, anxiety, life stress, and PTSD the family felt.
They also asked how close the family felt to each other.
What they found
Most caregivers scored in the clinical range for depression, anxiety, and PTSD.
Families who said "we stick together" had less distress.
The data show a heavy mental-health load worldwide.
How this fits with other research
Capio et al. (2013) saw the same pain earlier in a smaller group, so the new study extends that work across countries.
Cianfaglione et al. (2015) found mothers of girls with Rett syndrome also had high anxiety, showing the pattern crosses diagnoses.
Van Hanegem et al. (2014) gave a bright spot: good teamwork with waiver staff cut stress for autism families.
Put together, the papers say caregiver distress is common, but strong bonds—inside the family or with helpers—can soften it.
Why it matters
When you serve a client with PWS, screen parents and siblings for depression, anxiety, and PTSD.
Add goals that boost family cohesion—shared meals, game nights, or sibling support groups.
A stronger family unit can lower everyone’s distress without extra hours of therapy.
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02At a glance
03Original abstract
BACKGROUND: Individuals with PWS need constant support and/or supervision, which creates a high caregiver burden on their parents and siblings. Previous research has identified adverse stress outcomes in relatively small and country-specific samples. This study's aims were to examine stress outcomes in a large multi-country sample of parents and siblings and to expand upon previous research by incorporating data on psychosocial factors that may mitigate stress outcomes. METHODS: The sample comprised 135 parents of a child with PWS, with additional data for 45 siblings as reported by parents. Participants were recruited from 31 countries, spanning Europe, North and South America, Africa, Asia and Australasia, who participated by completing an online questionnaire that included standardised psychometric measures of depression and anxiety (HADS), life stress (PSS), PTSD symptoms (CATS-C) and family cohesion (FACES II). Outcomes were compared to published population norms, and multiple regression was used to investigate the role of potential exacerbating and mitigating factors. RESULTS: Findings revealed high rates of mental pathologies in both parents and siblings. Parents' scores for depression and anxiety indicated high rates of caseness: 67.4% of parents exhibited 'abnormal' levels of anxiety, while 15.6% exhibited 'borderline abnormal' levels; 34.8% exhibited 'abnormal' levels of depression, with 22.2% exhibiting 'borderline abnormal' levels. Younger parents exhibited higher anxiety than older parents (p = 0.007); younger male parents reported higher depression than older male parents (p = 0.029). Parents whose child with PWS lived in the family home exhibited higher depression scores than parents whose child with PWS lived away from home (p = 0.035). Family cohesion was inversely associated with parental depression (p < 0.001) and parental anxiety (p = 0.012), even when statistically controlling for age of parent, age of child with PWS and parental education level. Scores for life stress were markedly higher than population norms, with 88.7% of parents exhibiting 'high' or 'moderate' life stress. Parental life stress was significantly correlated with temper outburst severity in their child with PWS (p < 0.001) and with food problem severity (p < 0.001). All siblings exhibited at least one symptom of PTSD, with 28.9% of siblings exhibiting 'clinically relevant' levels of PTSD symptoms. Sibling PTSD symptom levels were significantly associated with temper outburst severity in the child with PWS (p = 0.025) but not with ratings of food problem severity (p = 0.114). Family cohesion was inversely associated with PTSD symptoms in siblings (p = 0.022). CONCLUSIONS: PWS impacts families negatively, and relatives suffer as a result. The findings of this study confirm that parents and siblings of persons with PWS exhibit clinically notable levels of mental pathology. Strategies to enhance family cohesion should be employed to help diminish adverse outcomes among PWS families.
Journal of autism and developmental disorders, 2026 · doi:10.1207/s15327752jpa5201_2