South African adolescents living with spina bifida: contributors and hindrances to well-being

Background: Spina bifida myelomeningocele is a major cause of disability among adolescents. However, little research is available in low-income nations such as South Africa. Investigating the contributors and hindrances to well-being in adolescents with spina bifida myelomeningocele may yield novel insights. In this study we included both adolescents and their primary caregivers to examine their perspectives on caring for and facilitating improvements in the life of the adolescents living with spina bifida myelomeningocele. Objectives: To identify and document the perceptions of adolescents with spina bifida myelomeningocele and their primary caregivers on the factors that contribute to and hinder the well-being of adolescents living with spina bifida myelomeningocele in South Africa. Method: An explorative qualitative research design was utilized, guided by a positive psychology theoretical framework. Fourteen participants, consisting of seven adolescent-primary caregiver dyads, were interviewed. Data were analyzed using thematic analysis and coded inductively using ATLAS.ti software. Results: We identified eight themes describing participants’ perceptions on contributors and hindrances to the well-being of adolescents with spina bifida myelomeningocele. Contributing factors included: family support, social groups, special needs education, sport participation, striving for independence, and finding meaning in life. Hindrances included: structural (lack of resources, medical care and mobility challenges) and social (bullying and harmful friendships, secrecy about the condition, social isolation and unhappiness) hindrances to well-being. Conclusion: Acknowledging the contributors and hindrances to the well-being of adolescents with spina bifida myelomeningocele is crucial for guiding informed positive interventions and preventing blind spots. Given the limited number of positive contexts, concentrated effort is required to facilitate opportunities for growth in a range of environments. Primary caregivers lack insight into the positive and negative aspects of the adolescents’ lives. We suggest families prioritize bonding time and open communication