title: Children's experiences of participation in the cleft lip and palate care pathway.
abstract: OBJECTIVE
  This qualitative study sought to explore children's perspectives on their participation in the cleft lip and palate care pathway.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Academic Unit of Oral Health and Development, School of Clinical Dentistry, Claremont Crescent, Sheffield, UK. melanie.hall@sheffield.ac.uk
authors.forename: Melanie
authors.initials: M
authors.lastname: Hall
authors.forename: Barry
authors.initials: B
authors.lastname: Gibson
authors.forename: Allison
authors.initials: A
authors.lastname: James
authors.forename: Helen D
authors.initials: HD
authors.lastname: Rodd
mesh_terms: D000293:Adolescent; D002648:Child; D002971:Cleft Lip / Q000523:psychology* / Q000628:therapy; D002972:Cleft Palate / Q000523:psychology* / Q000628:therapy; D019091:Critical Pathways; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D010358:Patient Participation / Q000523:psychology* / Q000706:statistics & numerical data; D017060:Patient Satisfaction