Improving social functioning in Prader-Willi syndrome

People with intellectual or developmental disabilities, including Prader-Willi syndrome (PWS), are at heightened risk for social exclusion and isolation. This underpins loneliness, depression and anxiety, contributes to poor health and reduced longevity. This project will recruit 50 young adults with PWS into an intensive, 10-week group intervention aimed at improving social skills, perceptions and thinking in Prader-Willi syndrome, to help manage anxiety, depression, mental health problems, relationships with family, friends, and caretakers. The goal is to develop a program that can be extended to impact young adults with PWS.

ABSTRACT: Social isolation and impaired social cognition underpins loneliness, depression and anxiety, contributes to poor health and reduced longevity. They also are associated with such cognitive consequences as impaired executive functioning, cognitive decline, a bias towards negative, depressive thinking, and oversensitivity to perceived social threats. People with intellectual or developmental disabilities, including Prader-Willi syndrome (PWS), are at heightened risk for social exclusion and isolation. These risks are associated with the historical institutionalization, marginalization and maltreatment of those with intellectual disabilities, as well as with persistent disparities in health, education and employment opportunities.

At the same time, however, social isolation and loneliness in people with intellectual disabilities are related to individual factors, including deficits in social skills and impaired self-perceptions and social cognition. In people with PWS, these often manifest in being easily slighted, anxious, quick to judge others and form misperceptions, react impulsively with anger, and having difficulties modifying their social behavior to fit changing situations as they arise.

Social isolation and loneliness are readily modifiable through interventions, and a growing literature describes such efforts in several vulnerable groups (e.g., elderly, autism). However, no descriptive or interventions studies have been conducted in PWS that target isolation or impaired social perceptions.

A high-risk age group for social isolation are older adolescents and young adults with PWS as they transition out of school and into adulthood. These individuals have lost the built-in social support, services and structure provided by formal schooling, and the implementation and quality of legally mandated transition services are highly variable. Many adults with PWS (and other disabilities) have little or nothing to do during the day even as their parents navigate the more fragmented adult service systems to obtain meaningful daily activities for their adult children.

In the grant, we aim to recruit 50, 16 to 26 year olds with PWS into an intensive,10-week group intervention aimed at improving social skills, perceptions and thinking. Sessions will occur 3 times per week, and be conducted on-line using secure technology with 4-6 individuals per group. Groups will be led by skilled practitioners with expertise in PWS, and include tests of social and emotional functioning administered before, during, and after the intervention, and at 3 other times during a 4-month follow-up period. Regular practice of skills is built into the intervention, with fun, motivating exercises conducted at home, in the community, and with the group leaders.

In the short-term, participants with PWS will be given the opportunity to improve their social problem-solving skills, perceptions and thinking. These are critically important steps in helping them to manage their anxiety, depression, other mental health problems, and to get along better with family members, staff and friends. In the long-term, we will use data from this grant to further test these interventions.

This project was funded by the Foundation for Prader-Willi Research Canada

Research Outcomes: Public Summary 

Social skills can be taught to teens and young adults with Prader-Willi Syndrome using the developed evidence based curriculum BOSS. We have noticed that people who participate really enjoy the interactions and became more cooperative and prosocial as sessions proceeded. Parents noticed more self-talk and other calming techniques to help manage emotions and encourage reciprocity in conversations. The “secret sauce” is the ability to connect with teens/adults with the same issues in a safe group environment that helps manage weaknesses and helps play to their strengths. We hope that other parents/ teachers/ therapists might use the curriculum in a face to face group or online setting to help teach social skills to reduce loneliness and isolation in those with PWS.

Research Outcomes: Publication

The Feasibility and Effectiveness of a Novel, On-Line Social Skills Intervention for Individuals With Prader-Willi Syndrome. Dykens EM, Roof E, Hunt-Hawkins H, McDonald C.  Front Psychiatry. 2022 May 24;13:863999. doi: 10.3389/fpsyt.2022.863999. PMID: 35693970; PMCID: PMC9175568.