Maternal parenting stress in families with a child with Angelman syndrome or Prader–Willi syndrome

Abstract

Background Parenting stress was investigated in mothers with a child with Angelman syndrome (AS) or Prader–Willi syndrome (PWS), which are genetically related.

Method Mothers of 24 children with AS and 23 children with PWS (2–12 years) completed the Nijmegen Parenting Stress Index-Short, Developmental Behaviour Checklist, and Vineland Screener 0–12.

Results Parenting stress was high for 58% of AS and 26% of PWS cases. For both syndromes, no relationship existed with the child's gender, age, or behavioural problems. In PWS there was no effect on level of functioning. Overall, more mothers with a child with AS perceived high parenting stress. When children showed low levels of behavioural problems this difference was contained. However, when children exhibited severe behavioural problems, parenting stress was the same for both syndromes.

Conclusion In AS professional family support is essential, since parenting is stressful for many mothers. In PWS, this is especially the case when behavioural problems are present.

Keywords:

• Angelman syndrome
• behavioural phenotype
• parenting stress
• Prader–Willi syndrome

Acknowledgements

We thank all parents and their children who participated in the study for their time and effort. We thank Tamara Stranders from the Dutch Prader–Willi/Angelman Parent Support Group for helping to organise the study, and the research assistants for their enthusiastic contribution.