A Qualitative Synthesis of Adolescents’ Experiences of Living With Spina Bifida

Abstract

In this article, I explore the experiences and perspectives of youth living with spina bifida, the second most common congenital condition in North America, to inform the development of health programs. I undertook a thematic metasynthesis to integrate qualitative evidence across studies examining the experiences of youth with spina bifida. I used 10 electronic databases to search for and review 4,051 abstracts, and identified 12 articles meeting the inclusion criteria. I examined those articles using a constant comparative approach, drawing on concepts of normalcy and biographical disruption to inform understanding of three emergent themes: (a) the medical management of spina bifida; (b) the importance of peer and family relationships (i.e., social support, belonging, and challenges in peer connections); and (c) identity and self-concept (i.e., normalization). This metasynthesis provides insight for youth, parents, and clinicians on areas of life in which youth could use further support.