Support Group Design for Parents of Children with Severe Developmental Disabilities
Steward, Sarah Rachelle
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Parents of children with severe developmental disabilities face a variety of unique circumstances as they raise a child who requires specialized care. Accessing the support of other parents of children with developmental disabilities can be a valuable external resource for managing the stress associated with raising a child with special needs. The literature on support groups for parents of children with disabilities predominantly focuses on evaluating existing support groups rather than designing support groups based on the recommendations of the population that would utilize them. The purpose of this study was to determine the perceived value of support groups and identify recommendations for support group design based on the experiences and feedback of 19 interviews with parents of children with severe or profound developmental disabilities. Despite varied experiences with support groups, most participants indicated the value of support groups is in providing a place where parents can feel understood, share information, and gather information. There was a high degree of variability among parents' recommendations for support group design, with the preferences of some parents being in direct contrast to the preferences of others; the summary recommendations for support group design address a wide range of preferences: a qualified group leader to organize groups that are highly flexible in structure, composed of parents with a high degree of similarity, and that offer a wide variety of content in various formats.
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