Rationale

1. Rationale Results This study describes the prevalence of 4 secondary conditions: 1. social isolation, 2. level of independence, 3. obesity, and 4. depression that have been shown in other research to be related to non-optimal outcomes. Arkansas has a statewide registry of spinal cord disabilities, which includes all persons with spina bifida. Very limited research has been conducted on adults with spina bifida due to historically high mortality rates among this population. However, medical advances have now extended life expectancy rates for these individuals. The number of participants in this study is 153 and they range in age from 12-31. This study is based on a sample which is unique for 3 reasons: 1). This is a population-based sample rather than only individuals referred by a clinic; 2). The majority of these individuals live in rural areas with limited access to medical/psycho/social services; 3). The participation rate is greater than 80%. Children and Adults with Spina Bifida: Exploring Secondary Psycho-Social ConditionsAndrea Hart, Ph.D. Betsy Johnson, M.S.W. and Lorraine McKelvey, Ph.D.University of Arkansas for Medical Sciences Methods We collected information from both children and adults with spina bifida through a face-to-face interview. After the interview, those individuals with spina bifida aged 16 and older were asked to complete a supplemental questionnaire on sexuality, alcohol, tobacco, and drug use. Measures included individual questions on social isolation and independence, self-rating of weight, CESD depression scale, and the Pearlin Mastery scale. Conclusion Descriptive analyses of demographics are representative of the general Arkansas population. Analyses indicate unusually high rates of depressive symptoms across both children (60% at risk for major depression) and adults (75%) with spina bifida. Strikingly, 13% of adults with spina bifida state that their parents frequently or occasionally limit their independence and 7% of adults never stay home alone for more than 2 hours. Although, most children and adults are happy with the number of friends they have, they are not getting as much interaction with those friends as they would like, and a high percent in the last month are not getting out or being visited by friends. These data indicate that persons with spina bifida are at a much higher risk for obesity and depression than the general population, may be having trouble gaining independence—possibly due to lack of provider services in rural Arkansas, and are feeling socially isolated. These findings may indicate infrastructure deficiencies such as the lack of accessible transportation, inability of parents to find or hire support services personnel, or lack of accessible mental health care. Future research should examine these possible confounding factors.