ERIC Number: ED314901
Record Type: Non-Journal
Publication Date: 1989
Reference Count: N/A
Children with Osteogenesis Imperfecta and Their Life Situation. Report and Documentation.
Children with osteogenesis imperfecta form a small and relatively unknown group, with 5 to 10 children diagnosed in Sweden each year and a total of around 200 people under the age of 17 having the condition. A questionnaire was completed by families of 24 Swedish children with osteogenesis imperfecta, and three families were interviewed. The questionnaire addressed: how and when parents were informed of the diagnosis, daily activities and play, transportation considerations, hydrotherapy, fractures, and technical aids. Interviews carried out with three children and their parents aimed to establish a picture of the daily living conditions of children with osteogenesis imperfecta and the impact of their handicap on the family. The interviews covered daily life, child interests, home modifications, handicap aids used, and problems unsolved by aids. The report concludes that families of children with osteogenesis imperfecta need more community support than they receive, that major problems exist with handicap aids that have not been modified for these children, and that parents need more information on handicap aids available. (JDD)
Publication Type: Reports - Descriptive; Reports - Research
Education Level: N/A
Authoring Institution: Swedish Inst. for the Handicapped, Bromma.
Identifiers - Location: Sweden