Support Group Value and Design for Parents of Children with Severe or Profound Intellectual and Developmental Disabilities

Abstract

The purpose of this study was to interview parents of children with severe or profound intellectual and developmental disabilities to determine the perceived value of support groups and identify recommendations for support group design based on their experiences and feedback. Despite varied experiences with support groups, most parents indicated the value of support groups is in providing a place where parents can feel understood and both share and gather information. Parents recommended support groups be targeted for parents of children with similar disabilities and needs, have flexible structures and qualified leaders, and offer a wide variety of content in various formats. Given parental recommendations for support group design varied, summary recommendations addressing a wide range of preferences are provided.