What families with children with brittle bones want to tell

• Published in: Child : care, health & development Vol. 28; no. 4; pp. 309 - 315
• Main Authors: Claesson, I. Bernehäll, Brodin, J.
• Format: Journal Article
• Language: English
• Published: Oxford, UK Blackwell Science Ltd 01.07.2002; Blackwell Publishing Ltd
• Subjects: Adaptation, Psychological; Adolescent; Adolescents; Adult; brittle bone disease; Brittle bones; Caregivers; Child; Child, Preschool; Children; Cost of Illness; Disabled Children; Experiences; Families; Family Involvement; family support; Genetic Disorders; Heredity; Holistic Health; Humans; Infant; Inservice Education; Interpersonal Relationship; Medical Services; Municipalities; osteogenesis imperfecta; Osteogenesis Imperfecta - psychology; Parents; Parents - psychology; psycho-social aspects; Questionnaires; Respite Care; Social Support; Surveys and Questionnaires; Sweden; Sweden
• DOI: 10.1046/j.1365-2214.2002.00282.x
• ISSN: 0305-1862

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.