The Support Needs and Barriers of Minorities: Hispanic Families and the Down Syndrome Network of Central Carolina. By K. Gayle Simpson
Introduction: Support groups are valuable to families experiencing genetic conditions because they provide both educational and emotional support. The Down Syndrome Network of Greater Greensboro (DSNGG) was formed in 2002 by a group of parents and healthcare professionals to provide support to local families. The DSNGG has been very successful; however, like many support groups, ethnic minorities are underrepresented. North Carolina has a large Latino population, and the DSNGG would like to extend its services to Latino families to ensure their needs are also met. Most research indicates that Latino families with children with disabilities do not receive the support they need, and this can be seen through the lack of use of medical and support services (Centers for Disease Control, 2001). The consequences of Latinos not being involved in a support group may include lack of educational information, social support, and reduced access to medical care. The purpose of this project is to assess the level and types of support Latino families of children with Down syndrome are currently receiving. Secondly, the project will identify the barriers to support Latino families face; and lastly, assess their interest in receiving support from the DSNGG. Methods: In order to assess the support needs and barriers of Latino families with children with Down syndrome and offer recommendations to the DSNGG on how to increase support for Latino families two approaches were used: 1) A survey of existing support groups who serve Latino families with children with Down syndrome and 2) A focus group meeting of local Latino families with children with Down syndrome. Three established Latino support groups were interviewed in order to learn how successful support groups for Latinos are formed and organized. In addition, a group of Latino families who have a child with Down syndrome were invited by local healthcare agencies in Greensboro , NC to participate in a focus group discussion. Results: The 5 Latino parents who participated in the focus group meeting indicated that the most important barriers to support and services are language, transportation and decreased access to services. Parents also reported that their nuclear and extended families are the most important source of support in their lives. Overall, the families reported that they would like contact with other families with children with Down syndrome and would like to participate in a regular support group through the DSNGG. Latino families are interested in this experience because they can learn from the experiences of others and allow their children to meet other children like themselves. Using the responses from the interviews of established support groups and the responses of the focus group meeting participants recommendations to the DSNGG are made to increase the amount of support Latino families in the Greensboro area are receiving.