Perceptions of Social Functioning Among Adolescents Aged 12-14 with Spina Bifida and Their Parents

BackgroundSpina bifida (SB), a congenital defect affecting neural tube closure, results in physical, neuropsychological, and social challenges. Adolescents with SB may experience impaired social functioning due to mobility limitations, pain, and cognitive issues, which can affect their overall well-being. However, little is known about factors facilitating social functioning in these adolescents.ObjectiveThis study aimed to explore the perceptions and expectations of adolescents with SB and their parents regarding social functioning, identifying facilitators and challenges that could inform interventions.MethodsA qualitative descriptive design and interactive interviews were used with adolescent-parent dyads. Adolescents recruited were diagnosed with myelomeningocele (the most severe form of SB), spoke English, and had cognitive ability to participate in an interview. Adolescents' English-speaking parents were also recruited. Data were analyzed using direct content analysis to identify key themes related to social functioning.ResultsParticipants were 10 primarily African American adolescent-parent dyads where the adolescents were aged 12-14. The interviews revealed four key themes: (1) facilitators of social functioning, primarily family relationships and family/peer support, helped adolescents navigate social interactions despite their physical limitations; (2) challenges to social functioning, including mobility limitations, stigma, and difficulty developing friendships, often led to social isolation; (3) the impact of social participation on physical and mental health was evident, with both adolescents and parents recognizing that social involvement contributed positively to well-being; and (4) the impact of parents' expectations on social functioning significantly shaped adolescents' social involvement, with some parents promoting active participation while others limited social activities to protect their children from negative influences.ConclusionMinority adolescents with SB face significant barriers to social functioning, particularly due to pain, mobility limitations, and stigma/bullying. However, strong family support and peer relationships played a critical role in fostering social engagement and promoting overall well-being. The study highlights the importance of early interventions and inclusive programs that reduce stigma/bullying and promote social participation for adolescents with SB. Findings provide a voice for underrepresented African American adolescents and insight into the complex interplay of physical, social, and psychological factors affecting adolescents with SB, offering guidance for future interventions aimed at enhancing social functioning.