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What families with children with brittle bones want to tell
I Bernehäll Claesson1, J Brodin
1Stockholm Institute of Education, The Department of Human Development, Learning and Special Education, The Disability and Handicap Research Group, Sweden.
Insights
Osteogenesis imperfecta, or brittle bone disease (BBD), affects few people. This study explores the daily life consequences of BBD beyond medical treatment, focusing on pedagogical and psychosocial impacts.
Area of Science:
- Pediatrics
- Psychology
- Genetics
Background:
- Osteogenesis imperfecta (OI), or brittle bone disease (BBD), is a rare genetic disorder.
- Existing research predominantly addresses the medical aspects of OI.
- Pedagogical and psychosocial dimensions of OI remain under-explored.
Purpose of the Study:
- To investigate the daily life consequences of Osteogenesis imperfecta.
- To survey the pedagogical and psychosocial impacts of BBD on children and adolescents.
- To emphasize a holistic approach to managing OI, considering the child's environment.
Main Methods:
- Utilized a questionnaire distributed to 30 families affected by OI.
- Conducted interviews with 10 families having children or adolescents with BBD.
- Gathered qualitative data on the lived experiences of families managing OI.
Main Results:
- OI significantly impacts daily life beyond its medical manifestations.
- Pedagogical challenges and psychosocial adjustments are crucial aspects for families with OI.
- The need for integrated support systems addressing medical, educational, and emotional needs is highlighted.
Conclusions:
- A holistic view of the child with OI is essential for effective management.
- Addressing non-medical aspects like education and psychosocial well-being is critical.
- Future interventions should encompass a broader range of support for individuals with BBD and their families.
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.
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