Children's experiences of participation in the cleft lip and palate care pathway

Abstract

Aim: This qualitative study sought to explore children's perspectives on their participation in the cleft lip and palate care pathway.

Design: Eight boys and nine girls (aged 8-17 years), with a range of cleft types and who were patients at a British dental hospital each took part in two child-centred interviews which incorporated participatory activities. An initial interview focused on children's general life stories, and these often encompassed a discussion about cleft lip and/or palate. A follow-up interview explored specific aspects of the condition and its related treatment.

Results: Data revealed the varying roles that young people can play in decision-making, which can be described as active or passive. In addition, the dynamic degree of participation was highlighted with patients occupying different roles throughout the care pathway.

Conclusion: The research provides an insight into treatment decisions, and how young people, their families, and clinicians interact to arrive at these. Findings provide further evidence to support the important contribution young patients can make in their own treatment choices.