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. / Master of Science / Parents of children with severe developmental disabilities (any type of impairment that is chronic and affects functioning) are often confronted with unique challenges because of the extra care their child may require. Having a child that requires full-time care, while in some ways rewarding, is also often difficult for parents, and may affect many different areas of their lives. As a result, parents may seek additional support, including seeking support from other parents of children with severe developmental disabilities. Support groups are groups of people with a shared interest or need—in this case, parents of children with severe developmental disabilities—who meet in a variety of possible formats. The purpose of this research study was to get a better understanding of the value parents perceive support groups to have, and the specific formats they recommend to facilitate what they would most like to get out of support groups. The results of this research study provide recommendations that can be used by parents or by professionals to design support groups to best meet the needs of parents of children with severe developmental disabilities.
| Identifer | oai:union.ndltd.org:VTETD/oai:vtechworks.lib.vt.edu:10919/85638 |
| Date | 12 May 2017 |
| Creators | Steward, Sarah Rachelle |
| Contributors | Human Development, Jackson, Jeffrey Brown, Falconier, Mariana K., Muruthi, Bertranna Alero |
| Publisher | Virginia Tech |
| Source Sets | Virginia Tech Theses and Dissertation |
| Detected Language | English |
| Type | Thesis |
| Format | ETD, application/pdf |
| Rights | In Copyright, http://rightsstatements.org/vocab/InC/1.0/ |
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