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Living with facial disfigurement—strategies for individuals and care management
Author(s) -
Bergendal Birgitta,
Ahlborg Bitte,
Knudsen Elisabet,
Marcusson Agneta,
Nyberg Jill,
Wallenius Elisabeth,
GustafssonBonnier Kristina
Publication year - 2011
Publication title -
special care in dentistry
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.328
H-Index - 41
eISSN - 1754-4505
pISSN - 0275-1879
DOI - 10.1111/j.1754-4505.2011.00215.x
Subject(s) - disfigurement , medicine , craniofacial , focus group , health professionals , health care , nursing , family medicine , psychiatry , surgery , marketing , economics , business , economic growth
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.