Life Satisfaction Among Mothers of Individuals with Prader-Willi Syndrome.
Mom stress and child behavior problems drag down life satisfaction for mothers of kids with PWS, yet we still don’t know how to improve it over time.
01Research in Context
What this study did
Researchers asked moms of kids with Prader-Willi syndrome to fill out surveys.
They wanted to know what shapes a mom’s life satisfaction right now and over time.
The team looked at child behavior problems, mom stress, and coping style.
What they found
Child behavior problems and mom stress both hurt current life satisfaction.
Coping style also mattered.
Yet none of these factors predicted change in satisfaction one year later.
How this fits with other research
Kleinert et al. (2007) found that adults with PWS feel better after long-term growth-hormone therapy.
That study looked at the person with PWS, not the mom.
Klein et al. (2024) showed that stressed carers rate their own and their adult’s quality of life more alike.
This matches Eussen et al. (2016): high stress links to distorted views of well-being.
Ferrari et al. (1991) compared fathers of teens with and without intellectual disability on stress and coping.
The 1991 study only described groups, while Eussen et al. (2016) links stress to actual life satisfaction.
Why it matters
When you assess a family, ask about mom’s stress and the child’s toughest behaviors.
Lower either one and you may lift mom’s life satisfaction today.
But we still lack tools that drive long-term gains, so keep measuring and adjusting.
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02At a glance
03Original abstract
Mothers of individuals with Prader-Willi syndrome (PWS) often experience numerous stressors, even when compared to mothers of children with other intellectual and developmental disabilities. Despite this, these mothers show great variability in self-reported life satisfaction. Using data from a longitudinal study of individuals with PWS and their families, the present study analyzed factors related to maternal life satisfaction, both cross-sectionally and over time. Results show that both child factors (e.g., behavior problems, hyperphagia) and maternal factors (e.g., stress, coping style) were significantly related to maternal life satisfaction. However, none of the tested variables predicted change in life satisfaction over time. Research and practice implications are discussed.
Journal of autism and developmental disorders, 2016 · doi:10.1007/s10803-016-2741-5