Date of Award

2014

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Campbell K Brasington

Abstract

This study sought to identify the goals parents have for their young adult sons and daughters with Down syndrome, the factors that help to achieve those goals, and parents' perceived barriers to successful attainment of those objectives. While many supports are readily available to youths with Down syndrome in primary and secondary school, many of these supports disappear as these individuals transition into adulthood. When combined with the inherent challenges of emerging adulthood, significant gaps in resources become evident for this population. In order to identify areas in need of improvement, this study surveyed parents of post- and peri-transitional young adults aged 18 to 29. This sample population was drawn from a national advocacy group (National Down Syndrome Congress) and Down syndrome clinics across the nation. Participants completed a written or online survey in which they selected and ranked their goals, and described resources that benefit and are barriers to success. At the end of the written survey, participants were invited to take part in a semi-structured phone interview to expound on their experiences. 38 parents took the written survey and 13 took part in the phone interview.

Ultimately, many of the goals parents reported to be most important, including friendships, safety, paid employment, independent living, and access to healthcare, were amongst the least frequently achieved. A number of barriers, including deficits in transportation, housing, and social options, were found to contribute to this disparity. In addition, this study replicated earlier reports, which indicated that protecting health, assuring safety and security in multiple realms, finding meaningful activities after high school, and establishing supportive social relationships were focuses of transitional youths with ID and their parents. Study participants also conceptualized new paradigms regarding independence and autonomy.

Rights

© 2014, Julianna Elise Hudnall

Download

Share

COinS