Growing up in a wheelchair : a qualitative study of adolescents and young adults with congenital physical disabilities

The purpose of this study was to explore and describe the experience of growing up with a congenital physical disability and the effect this has on self-concept development from the perspective of adolescents and young adults who have such a disability which confines them to a wheelchair. A phenomenological approach was used to guide data collection through a series of 13 semi-structured interviews with 6 wheelchair dependent individuals between the ages of 12 and 23 years. Data analysis occurred concurrently with data collection. It was found that there were three common components to the experience: family life, peer relationships and leisure-time activities but participants had two different perspectives on this experience. Those holding the "able" perspective were optimistic, generally satisfied with their peer and family relationships and perceived themselves to be physically, socially and cognitively competent. Those with the "disabled perspective were pessimistic, unsatisfied with their peer and family relationships and did not perceive themselves to be physically, socially and cognitively competent. In terms of nursing practice, the findings indicate the necessity of supporting families in order to maintain disabled children and adolescents at home whenever possible and the importance of building positive self-concepts and high self-esteem in disabled children and adolescents. Implications for nursing research include further exploration and description of the experience of growing up with a congenital physical disability with larger numbers of disabled informants and expansion of the body of knowledge about the impact of the disabled child or adolescent on family functioning and family relationships.Applied Science, Faculty ofNursing, School ofGraduat