The Perspectives of Children and Young People Living with Cleft Lip and Palate: A Review of Qualitative Literature

Abstract

Objective To explore the experiences of children and young people with cleft lip and/or palate (CL/P) in relation to being treated for and living with this condition. Design A systematic review of qualitative research. Electronic databases and hand-searching were employed to identify relevant studies. The review centered on studies examining the views or experiences of young patients first-hand. Any study using a qualitative/mixed method design was eligible for inclusion. Results From 184 potential references, 38 papers were read in full, from which only two studies of young people met all the review's inclusion criteria. Common reasons for exclusion were not being a qualitative study, not focusing on CL/P, or data coming from parents only. A further two papers provided a retrospective account of childhood with CL/P from interviews with adults. Their suitability for the review's aims was limited, but they were discussed. Conclusions This review demonstrates that there is a paucity of evidence about the experiences of young people living with CL/P. No studies of children and only two studies of young people met all inclusion criteria. Identified papers implied that more attention is needed within families and services to help young people manage everyday difficulties such as bullying and self-consciousness due to facial difference.