Follow-up Study of the Lifestyle, Community Life and Community Resources Used by Emerging Adults and Adults with Spina Bifida

2011

Improvements in medical treatments and advances in technology and science have contributed to extending the lifespan of individuals with special health care needs and disabilities . It is now estimated that 90% of individuals born with disabilities, including those with spina bifida, will live into their 20s (Newacheck & Halfon, 1998). As greater numbers of children and youth with disabilities reach adulthood, it becomes incumbent to focus attention on the unique challenges this group of individuals face as adults. As national data reveal, adult outcomes for individuals with disabilities are discouraging. The purpose of this study is to examine the lifestyle a nd community outcomes of adults with spina bifida, 21 years and older. This investigation will provide insight as to the effect having and managing spina bifida has on lives of adults pertaining to a number of parameters considered key lifestyle indicators of adulthood. In person interviews that will be audiotaped will be collected from individuals enrolled in the study. Data gathered will be analyzed using descriptive statistics (frequencies). Responses to open ended questions will be summarized and coded into categories when possible.

Performing Research or Evaluation

Education & Early Intervention, Health-Related Activities, Employment-Related Activities, Housing-Related Activities, Transportation-Related Activities, Recreation-Related Activities, Quality of Life

Adults with Disabilities

Racial or Ethnic Minorities, Disadvantaged Circumstances, Geographic Areas, Empowerment Zone, Renewal Community, Rural/Remote, Specific Groups

International

N/A