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

Bibliographic Data

ID4621572
AuthorsSally Lindsay (0000-0002-5903-290X, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada, corresponding author)
Year2014
Volume24
Issue9
Pages1298-1309
Publication date2014-09-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueQualitative Health Research (JOURNAL)
Journal identifiersISSN: 1049-7323 • E-ISSN: 1552-7557
PublisherSAGE Publications Inc (PUBLISHER)
DOI10.1177/1049732314546558
PMID25104820
OpenAlexW2122190555
LanguageEN
Citations received2
References cited48

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

Developmental psychology · Medical education · Peer review · Political science · Qualitative research · Social science · Sociology · Spina bifida · Thematic analysis · Family and Disability Support Research · Medicine · Prenatal Screening and Diagnostics · Psychology · Social Psychology · Spinal Dysraphism and Malformations · Pediatrics