Child and Parental Factors Affecting Coping Strategies and Psychosocial Outcomes for Parents with Children with Prader-Willi Syndrome

Abstract

Prader-Willi Syndrome (PWS) is a rare, genetic neurodevelopmental disability characterized by hyperphagia, mood swings and intellectual disability. Families with a child with PWS often experience increased family tensions and a greater number of stressors, even compared to families with children with different intellectual and developmental disabilities (IDDs). However, there is variation in parental stress, anxiety and depression levels. This study explored the effects of both child factors, such as hyperphagia and severity of behavioral problems, and parental factors, such as coping strategies, on parental stress, anxiety and depression, for parents of children with PWS (n = 154). Results show that child factors significantly impact parental stress, anxiety and depression. Parental usage of rational, active coping strategies is strongly linked to lower stress and depression levels, while parents who employ avoidant, helplessness coping strategies are more likely to have higher levels of stress, depression and anxiety. While there were no significant interaction effects between parental coping strategies and the severity of the child’s behavioral issues on parental stress levels, the best outcomes were achieved when parents did not use avoidant coping strategies and their children had fewer behavioral problems. Future research implications and outcomes are discussed.