Adolescents' with Spina Bifida and Parents' Perceptions of Engaging in Social Activities

Background: Spina bifida (SB) is a congenital birth defect that adversely affects the spine and occurs in approximately three of every 10,000 live births in the United States. Little research data are available on adolescents and parents’ perceptions and expectations about social functioning of children with disabilities, particularly SB. Objectives: The aims of this study were to describe (1) the perceptions of adolescents with SB and their parents toward facilitators of and challenges to the adolescents’ social functioning, (2) parents’ perceptions and expectations of social functioning for their adolescents, and (3) adolescents’ perceptions of their parents’ expectations. Method: In this qualitative study, data were collected by conducting semi-structured interviews virtually via Zoom with 20 participants, including 10 adolescents with SB and 10 of their parents. Results: The benefits of adolescents’ engaging in social activities and having strong family relationships and support were recognized by both the adolescents and their parents. The adolescent and parent participants agreed that the adolescents encountered a variety of SB-related challenges, including stigma and bullying from other children as well as pain and skin problems. Conclusions: Nurses and other healthcare professionals should strive to maximize the social participation of adolescents with SB regardless of their physical limitations. In particular, nurses can take advantage of their interactions with parents and adolescents to discuss opportunities for the children’s social involvement. Additional nursing research is needed to determine how adolescents and parents can maximize adolescents’ engagement in social activities