Date of Award

1-1-2010

Document Type

Campus Access Thesis

Department

Genetic Counseling

First Advisor

Richard Ferrante

Abstract

What can healthcare professionals and support organizations do to meet the support needs of minority (African American) families in the disability community? This study aims to give some insight into this important question, with focus on the Down syndrome community. Down syndrome is a common chromosome condition that affects ~1/732 live births and affects all ethnic groups and cultures. However, studies that analyze the experiences and supports of families who have a child with Down syndrome have shown a limitation of ethnic and minority participation. In order to better serve these families, it is essential to gain an understanding of the role that cultural supports (i.e., faith/religion and extended family) and formal support groups have in the lives of these families, specifically African American families whose cultural supports have been deemed as salient in their lives in literature.

To achieve the study's goals, parents who are currently members of support groups and parents not currently in support groups whose child or adult child has a diagnosis of Down syndrome were voluntarily surveyed. Parents in support groups were obtained through national support organizations (i.e., NDSS and NDSC) and parents not in support groups were obtained through the assistance of genetics professionals at 10 Down syndrome clinics in varying regions of the U.S. A total of 68 surveys were completed via online and paper. Brief telephone interviews were conducted with 17 willing parents, to gain in-depth perspectives. The survey focused on how helpful cultural supports and formal support groups have been in their adjustment to their child or adult child with special needs, as well as what support groups can change to better meet their needs.

Results indicate that a mix of both cultural and formal support are being utilized by parents who are members of support groups and parents not in support groups are relying heavily on family and religious supports. However, there still appears to be unmet needs by all African American parents regardless of their support group status. Some parents have a need to feel more comfortable at support organizations, receive information about support sooner, and encourage the development of culturally sensitive publications. Based on the study results, suggestions and recommendations were made that can aid in developing appropriate materials, promote outreach to this ethnic group, and allow culturally appropriate and competent services to be offered in counseling, healthcare and support settings.

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