Children's and Adolescents’ Perspectives on Cleft Lip and/or Palate

Abstract

Children's voices are being increasingly acknowledged in health care research. The aim of this study was to explore children's and young people's perspectives of being born with a cleft lip and/or palate. The research took a qualitative approach that consisted of two interviews with each child, drawing on child-centered methodologies and techniques. The initial interview focused on children's general life stories, and these often encompassed a discussion about cleft lip and/or palate. The follow-up interview explored specific aspects of the condition and related treatment. The self-selected sample consisted of 17 children and young people (eight boys, nine girls) with cleft lip and/or palate, aged 8 to 17 years, who received treatment at a dental hospital in the U.K. Children's and young people's accounts identified a number of themes including how they became aware that they had been born with the condition, their views of the treatment pathway, and how it related to who they are. This study highlights the value of including young people's perspectives in oral health-related research. It has allowed a deeper insight into cleft lip and palate and shows that young people can contribute their views and experiences about services which demonstrate that these could be incorporated into service evaluations.