title: Improving quality of life of children with oral clefts: perspectives of parents.
abstract: Quality of life is increasingly recognized as an important health outcome in people with surgically treatable conditions. However, few data are available on children with oral clefts. Focus groups provide a rich exploratory approach to understanding health-related quality of life issues. We report findings from 2 focus groups of parents of children with oral clefts (cleft lip, cleft palate, and cleft lip and palate) in Utah and Idaho. Participants were guided into a discussion of issues and drivers of quality of life, from diagnosis through treatment to school entry. Parents identified crucial factors including the early need for support (including parent support groups), for credible information, and for advice for daily life. Surgery was a major factor affecting satisfaction and quality of life, and satisfaction depended not only on surgical results but importantly on communication, empathy, expectations, postsurgical care, and discharge management. Many parents underscored as critically important the preparation and the postsurgery experience, rather than the surgery itself. Parents also identified crucial milestones, including birth, diagnosis, the first surgery, and school entry. Combining these crucial issues with a life-stage approach provides a framework for intervention that focuses on drivers of quality of life at selected milestones in the life of children with oral clefts.
authors.affiliation: Division of Medical Genetics, University of Utah, Salt Lake City, Utah 84132, USA.
authors.forename: Mary Bishop
authors.initials: MB
authors.lastname: Stone
authors.forename: Lorenzo D
authors.initials: LD
authors.lastname: Botto
authors.forename: Marcia L
authors.initials: ML
authors.lastname: Feldkamp
authors.forename: Ken R
authors.initials: KR
authors.lastname: Smith
authors.forename: LeAnn
authors.initials: L
authors.lastname: Roling
authors.forename: Duane
authors.initials: D
authors.lastname: Yamashiro
authors.forename: Stephen C
authors.initials: SC
authors.lastname: Alder
mesh_terms: D000328:Adult; D002648:Child; D002971:Cleft Lip / Q000175:diagnosis / Q000523:psychology* / Q000601:surgery; D002972:Cleft Palate / Q000175:diagnosis / Q000523:psychology* / Q000601:surgery; D005260:Female; D017144:Focus Groups; D006801:Humans; D007061:Idaho; D008297:Male; D010290:Parents / Q000523:psychology*; D010549:Personal Satisfaction; D011788:Quality of Life; D016896:Treatment Outcome; D014589:Utah