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

Abstract

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.

Implications for rehabilitation

• Exploring the perspectives of adolescents living with spina bifida and their parents regarding well-being is important to develop appropriate interventions.

• Adolescents living with spina bifida value social support and social interaction as ways to maintain well-being.

• Special needs education institutions with curriculums tailored to adolescents with spina bifida promote comfort, acceptance, and personal excellence.

• Sport contributes to the mental, social and physical well-being of adolescents with spina bifida. Sport inspires and offers opportunities for success, it improves school attendance, increases positive affect, and provides opportunities for close relationships with friends and family.

• Finding ways to mitigate the stigma around spina bifida is necessary to improve adolescents’ well-being within South Africa.

Keywords:

• Adolescent
• disability
• positive psychology
• primary caregiver
• South Africa
• spina bifida myelomeningocele

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Disclosure statement

The authors declare no conflict of interest. The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.

Disclaimer

The views expressed in the submitted article are that of the authors, and not that of any institution or funder.