title: Living with facial disfigurement--strategies for individuals and care management.
abstract: Individuals and families affected by craniofacial disorders have expressed dissatisfaction with their experiences in the healthcare system, with day care, and in school situations. To capture their views, focus group encounters were done in a group of young individuals with these disorders and in a group of parents whose children were affected. The aim was to synthesize their attitudes and experiences into improved strategies for parents, teenagers, and professionals in the healthcare system. Their views were compiled into a document that emphasizes the responsibilities of persons with craniofacial disorders and their parents to actively seek information on diagnosis and treatment options and to participate in decisions on therapy. The conclusion was that it is not lack of specific knowledge but rather a lack of implementation of existing recommendations that makes living with facial disfigurement difficult for many individuals and their families.
authors: National Oral Disability Centre, The Institute for Postgraduate Dental Education, Jönköping, Sweden Mun-H-Center, National Orofacial Resource Center for Rare Disorders, Gothenburg, Sweden. birgitta.bergendal@lj.se
authors: Birgitta
authors: B
authors: Bergendal
authors: Bitte
authors: B
authors: Ahlborg
authors: Elisabet
authors: E
authors: Knudsen
authors: Agneta
authors: A
authors: Marcusson
authors: Jill
authors: J
authors: Nyberg
authors: Elisabeth
authors: E
authors: Wallenius
authors: Kristina
authors: K
authors: Gustafsson-Bonnier
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D002648:Child; D002656:Child Day Care Centers; D002675:Child, Preschool; D003256:Community Participation; D003258:Consumer Behavior; D054626:Consumer Health Information; D003376:Counseling; D019465:Craniofacial Abnormalities / Q000523:psychology*; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D006296:Health Services; D006806:Human Rights; D006801:Humans; D008297:Male; D010290:Parents / Q000193:education / Q000523:psychology; D010347:Patient Care Planning; D011368:Professional-Family Relations; D012574:Schools; D012944:Social Support; D055815:Young Adult