Children and Adults with Spina Bifida: Exploring Secondary Psycho-Social Conditions Andrea Hart, Ph.D. Betsy Johnson, M.S.W. and Lorraine McKelvey, Ph.D. University of Arkansas for Medical Sciences

1
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
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.
Sample Descriptives Sample Descriptives
Gender Female 52.9
Gender Male 47.1
Adult Status Child 32.7
Adult Status Adult 67.3
Race White 73.5
Race Black 14.5
Race Other 12.0
Yearly Family Income lt 20,000 32.8
Yearly Family Income 20,000 - 44,999 29.8
Yearly Family Income gt 45,000 37.4

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 independencepossibly 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.