Project Description:
Advances in medical care have significantly increased the survival of persons with spina bifida. Currently, most children with spina bifida survive childhood, enter adolescence, and can be expected to move into adulthood. Having met the challenges of life-threatening lesion repair, curvature of the spine, hydrocephalus shunt surgery and revision, infections, leg fractures, pressure sores, hip dislocations, and latex allergy, children with spina bifida and their families begin to notice other things that accompany the underlying disability ? secondary conditions. These conditions, such as obesity, decreased or limited mobility, incontinence, depression, and social isolation, have long-term implications for the independence and the physical and emotional well-being of adolescents and adults with spina bifida.
UAMS Partners for Inclusive Communities and the Arkansas Spinal Cord Commission (ASCC) have undertaken a study to determine the prevalence of current secondary conditions in Arkansas children and young adults with spina bifida. Patterns of distribution of secondary conditions in Arkansas by race, ethnicity, and socioeconomic factors will be examined. The study will also look at 1) possible factors that may either exacerbate or ameliorate the development of secondary conditions over time, and 2) the impact of secondary conditions on quality of life.
In 1993, ASCC, which manages the statewide registry of spinal cord disabilities, conducted a survey of persons with spina bifida. The original instrument from 1993 has been revised and expanded with input from a panel of health professionals, researchers, and parents. The data collected in the current study will be linked by each individual to their 1993 survey data to provide a longitudinal perspective on factors that may influence each individual?s unique development of secondary conditions.
All persons with spina bifida who participated in the ASCC 1993 survey and were aged 0 to 19 and their parents were invited to participate in the current study. Data has been collected in the following areas: health, weight, mobility, independence, living arrangements, social isolation, stress, depression, alcohol/tobacco/ drug use, sexuality, quality of life, and family/parental functioning.
During the next stage of the project we will conduct a qualitative study of children and young adults with spina bifida selected randomly from individuals who participated in the first stage of the project. Open-ended questions will be designed to determine critical decision points and other factors that influence the onset and course of secondary conditions and the achievement of independence.
The collaboration with ASCC has resulted in a dynamic dialogue about the health, mental health, fitness, and independence of persons with spina bifida. We hope to continue this dialogue and move toward the development of holistic health and wellness interventions designed to improve the quality of life and independence of Arkansas children with spina bifida.
Keyword(s):
spina bifida, independence, depression, obesity, quality of life
Area of Emphasis
Health-Related Activities, Employment-Related Activities, Housing-Related Activities, Transportation-Related Activities, Recreation-Related Activities, Quality of Life
Target Audience:
Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN
Unserved or Under-served Populations:
Geographic Areas, Rural/Remote, Specific Groups
