Using a community engaged research approach to develop the social skills training program for adults with Williams syndrome.

This article describes the development of a distance-delivered social skills training program for adults with Williams syndrome (SSTP-WS) through a community engaged approach. Throughout six phases of development, the research team received input from adults with Williams syndrome, caregivers, service providers, educators, and researchers on (a) the need for a training program and topics to be addressed (Phase 1), (b) an initial draft of the SSTP-WS (Phase 3), (c) the intervention pilot study (Phase 5), and (d) feedback to provide context for the results of the study (Phase 6). The development of the SSTP-WS resulted in an intervention aligned with the Williams syndrome community's values and needs that supports the unique cognitive and behavioral phenotypes and social characteristics of this low incidence disability population.

A Distance-Delivered Social Skills Program for Young Adults with Williams Syndrome: Evaluating Feasibility and Preliminary Efficacy.

Adults with Williams syndrome (WS) display hypersocial behaviors and experience social skills deficits. To improve social outcomes, we evaluated the feasibility, acceptability, and preliminary efficacy of an 8-week distance-delivered social skills program for adults with WS. Sessions were offered twice a week for 90 min. Twenty-four adults with WS were assigned to an intervention or waitlist control group. Outcomes were assessed through interviews and surveys with adults with WS, parents, and facilitators. The intervention was rated as acceptable and feasible by all. Parents rated adults with WS as displaying significant improvements in social skills; yet ratings by adults with WS did not change. Adults also displayed increased social skills knowledge following participation. Implications for practice and future research are discussed.

Restrictions, Power, Companionship, and Intimacy: A Metasynthesis of People With Intellectual Disability Speaking About Sex and Relationships.

Examining literature that tells us what people with intellectual disability (PWID) think and feel about their sexual lives may enable families and professionals to offer a more person-centered approach to education and support. Examining the voices of many individuals across several studies may provide more convincing evidence about the experiences of these individuals-turning a solo into a chorus. Thus, the purpose of this article is to describe the results of a metasynthesis of qualitative studies highlighting the voices of PWID with respect to relationships and sexuality. Combining the results of 16 qualitative studies, 271 participants with intellectual disability were interviewed individually or in focus groups about their feelings and experiences regarding intimate relationships. Studies were conducted across Europe, in Australia, China, and in the United States. A little more than half of the participants were male; ages ranged from 13 to 89. Results revealed two competing themes of control and desire. Participants across studies desired friendships and close interpersonal relationships, yet were restricted from developing these relationships by policies, program staff, and family members.