Adolescents born with spina bifida: experiential worlds and biopsychosocial developmental challenges

The author used phenomenological (interpretive) ethnography to investigate the experience of physical disability and its attached meanings in relation to self, world, and other for adolescents born with spina bifida. Multiple in-depth interviews were conducted with 11 late-stage adolescents (aged 18-24 years). Analysis of their narrative accounts illustrated commonalities with respect to the biopsychosocial impact of living with the physical disability of spina bifida. The theme, "Experiencing self as dissimilar other" is reported upon. Findings imply that youth born with spina bifida face biological, psychological, and social challenges that might interfere with normative developmental tasks of adolescence, including identity formation. Greater emphasis needs to be directed toward humanizing and emancipating the physical and social environment for youth with physical disabilities to maximize developmental opportunities and potential while fostering positive identity.