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

Marisa H Fisher; Rhonda S Black; Rebecca R Kammes

doi:10.1177/17446295241245783

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

J Intellect Disabil. 2024 Apr 5:17446295241245783. doi: 10.1177/17446295241245783. Online ahead of print.

Authors

Marisa H Fisher¹, Rhonda S Black², Rebecca R Kammes^{3

4}

Affiliations

¹ Department of Counseling, Educational Psychology, and Special Education and Center for Services, Training, and Research for Independence and Desired Employment, Michigan State University, East Lansing, MI, USA.
² Department of Special Education, University of Hawai'i at Mānoa, Honolulu, HI, USA.
³ Department of Counseling, Educational Psychology, and Special Education, Michigan State University, East Lansing, MI, USA.
⁴ UCLA Semel Institute for Neuroscience and Human Behavior, Los Angeles, CA, USA.

PMID: 38578112
DOI: 10.1177/17446295241245783

Abstract

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.

Keywords: Williams syndrome; community engaged research; community participation; social skills.