Gender Differences in Community Integration, Self-Management, and Quality of Life in Young Adults with Spina Bifida

Background and Purpose: Medical advances have significantly increased the survival rate of individuals born with spina bifida (SB). However, multi-system impairments associated with this congenital birth defect, coupled with experiences of stigma and social isolation, present challenges to completing the developmental tasks of young adulthood and place them at risk for low quality of life (Kinavey, 2007). Women with SB may be especially vulnerable owing to their double jeopardy status related to gender and disability (Brooks, & Deegan, 1981; O'Hara, 2004). The intent of this research was to explore gender differences in early adulthood outcomes among individuals living with SB. It was hypothesized that young women with SB would report less self-management and community integration (employment, independent living) and decreased quality of life (QOL) compared to their male counterparts.

Methods: A multi-site convenience sample of 61 individuals with SB, 18-25 years of age responded to a self-report survey inclusive of standardized measures of self-management and QOL and demographics. The Adolescent Self-Management and Independence Scales (AMIS II) yielded information on independent living skills and condition management skills. Four QOL domains (physical, psychological, social, environmental) were measured using the World Health Organization QOL instrument. Logistic binary regression was used to test the relationships between gender and community integration variables, after controlling for the effects of condition severity. Repeated measures ANOVA was run to test the effects of gender on correlated QOL and AMIS II sub-scales.

Results: Participants reported a mean age of 21.05 years (SD=2.11). A majority was Caucasian (77%), female (61%), unemployed (61%), and in supervised living situations (73%). Significant effects were found for gender with females having higher odds of independent living (OR=16.28, p=.01) but lower odds of employment (OR=.24, p=.01). Both models produced moderate pseudo-R2 (Nagelkerke=.31 and .16) with correct classification of 81.7% and 63.9% of cases, respectively. No differences were found among the QOL domains by gender. A significant gender by factor interaction was observed on the AMIS II sub-scales (F(1,58)=4.05, p=.049). Females reported higher levels of independent living skills, but no gender differences were observed on the condition management skills sub-scale.

Conclusions and Implications: Findings provide mixed support for an elevated risk status among young women with SB. Females were less likely to be gainfully employed but experienced greater success transitioning to independent living and evidenced more of the self-management skills necessary for independent living. Participants evidenced poor rates of community integration, regardless of gender. Despite limitations related to the cross-sectional data and sample of convenience, study findings underscore the need for interventions supporting the transition into young adulthood for this vulnerable population so that they may become fully integrated members of society.

Brooks, N., & Deegan, M. (1981). Women and disability, the double handicap. Journal of Sociology & Social Welfare, 8, 229-232.

Kinavey, C. (2007). Adolescents born with spina bifida: Experiential worlds and biopsychosocial developmental challenges. Issues in Comprehensive Pediatric Nursing, 30, 147-164.

O'Hara, B. (2004). Twice penalized: employment discrimination against women with disabilities. Journal of Disability Policy Studies, 15, 27-34.