Families of those with PWS experience a great deal of stress, particularly during adolescence. In this study, we are funding the development of a new behavioral intervention, aimed at developing more effective coping skills in fathers of adolescents with PWS, as a means to improve overall family well being. Dr. Forster will work with fathers of adolescents with PWS using an established program to teach healthy coping skills. The goal is for father to be less stressed and more engaged, thereby improving the overall functioning and well being of the entire family.
Theresa Strong, Director of Research Programs, shares details on this project in this short video clip.
Watch the full webinar describing the 11 research projects funded in this grant cycle here.
Families of people with PWS experience more stress than families of people with any other developmental disability, especially during the adolescent and young adult years. Stress is the highest in mothers followed by fathers. It has been difficult to engage mothers in formal stress reduction interventions, perhaps because they are overwhelmed with their care-giving demands. In this study, we propose to enroll fathers of intact families with an adolescent with PWS age 12-18 years in a psychological intervention delivered via a series of on-line groups. We believe that fathers will be accessible and amenable to this technological approach. Acceptance and Commitment Training (ACT) has been used successfully with families of children with autism and other disabilities in over 100 studies. This is the first time ACT will be applied to PWS. Through a series of mindfulness exercises, ACT teaches cognitive flexibility: the ability to focus on the here-and-now while becoming aware of inner thoughts and emotions that set up road blocks and interfere with the ability to achieve goals consistent with personal values. The ultimate objective of this flexibility is to move toward a rewarding life style with healthy coping strategies and away from distress and avoidance, despite difficult circumstances. We believe that by modifying the father’s perception of stress, he will be better able to devote time, energy and emotional support to the family in order to help stabilize the home environment. As a secondary target, we hope to see an improved family environment resulting in decreased stress and increased parenting satisfaction for the mother. Fathers will be recruited through advertisements on FPWR, PWSA and chapter websites. Family demographics, home environment, and the adolescent’s degree of behavioral difficulty will be assessed at the outset. Then, we will administer a series of questionnaires measuring stress and cognitive flexibility in fathers before, during, and after the intervention. Maternal stress, parenting satisfaction and home environment measures will be completed before and after the intervention. At the conclusion of this intervention, we hope to see that fathers will be less stressed and more engaged in family function to ease family stress and decrease emotional distress for the mother. Although this research addresses family function rather than the clinical care of the individual with PWS, it has the potential to improve the adolescent’s behavior in two ways. First, by improving family function, parents may be more able to manage the home and family environment resulting in decreased stress for everyone. Second, decreased family stress may increase the likelihood that family members will participate more fully with behavioral treatment recommendations. Next steps: Based upon the success of this pilot, we plan to develop similar on-line programs for mothers and siblings of adolescents with PWS. Also, we would like to make this family-focused intervention available to parents of children at other developmental levels, and offer “ACT for PWS” training to staff of PWS multidisciplinary clinics across the USA and Canada.
Jan Forster, MD
Jan Forster, MD