title: What families with children with brittle bones want to tell.
abstract: Osteogenesis imperfecta or brittle bone disease (BBD) is a most unusual disease and a limited number of people in the world are suffering from it. Most studies focus on the medical aspects of the disease and very little has been done with regard to the pedagogical and psycho-social aspects of the disease. This article is based on a questionnaire answered by 30 families, and interviews with 10 families with children and adolescents with BBD, and the purpose is to survey the consequences of the disease in daily life. Although medical treatment is of utmost importance, it is necessary to regard also other aspects, as it is significant to have a holistic view of the child in his/her environment.
authors.affiliation: Stockholm Institute of Education, The Department of Human Development, Learning and Special Education, The Disability and Handicap Research Group, Sweden.
authors.forename: I
authors.initials: I
authors.lastname: Bernehäll Claesson
authors.forename: J
authors.initials: J
authors.lastname: Brodin
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D019988:Children with Disabilities; D006694:Holistic Health; D006801:Humans; D007223:Infant; D010013:Osteogenesis Imperfecta / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D012944:Social Support; D011795:Surveys and Questionnaires; D013548:Sweden