Family and peer issues among adolescents with spina bifida and cerebral palsy

Increasingly, children with disabling conditions are surviving through childhood into adolescence and beyond. This places increased importance on understanding adolescent, family, and peer relationships, which are critical to healthy development among adolescents in general and to transitions to successful adulthood among youths with physical disabilities in particular. The purpose of this study was to identify the patterns of family and peer interactions. One hundred two youths with spina bifida and 60 adolescents with cerebral palsy between the ages of 12 and 22 completed written psychological measures as well as an in-depth structured interview. Approximately 90% of youths with spina bifida and cerebral palsy resided at home, of whom 80.4% and 72% lived with both parents. Almost without exception, parental relationships were defined as positive, with no difference of attitude noted toward the mother and father. Relationships with parents for teenagers with spina bifida were marked by high levels of dependence on parents for personal care such as bowel programs and, for both groups, low levels of responsibility at home and lack of discussion with parents about sexuality or menstruation. Although friends were viewed as very important by most respondents (approximately 83%), relationships were characterized by extremely limited out-of-school contacts, negligible participation with organized social activities, and a primary orientation toward sedentary activities. Finally, regarding heterosexual relationships, whereas 44.1% of respondents with spina bifida and 54.2% of respondents with cerebral palsy said their friends dated, only 14.7% and 28.3% of study participants indicated that they had ever been on a date and, even for those teenagers, heterosexual social contacts were infrequent. Although dating activity was rare, approximately three quarters of respondents indicated that they hoped to marry. Implicit in the findings of this study is the need for health care professionals to work more closely with parent groups, youths themselves, and other professionals to help normalize the social experiences of those developing with spina bifida and cerebral palsy to reduce the social isolation and its associated sequelae both during adolescence and beyond.