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Open Access Research article

The impact of severe osteogenesis imperfecta on the lives of young patients and their parents – a qualitative analysis

Maman Joyce Dogba1*, Christophe Bedos23, Michaela Durigova1, Kathleen Montpetit1, Trudy Wong1, Francis H Glorieux1 and Frank Rauch1

Author Affiliations

1 Shriners Hospital for Children, 1529 Cedar Avenue, Montreal, QC H3G 1A6, Canada

2 Faculty of Dentistry, McGill University, 3550 University Street, Montreal, QC H3A 2A7, Canada

3 Department of Social and Preventive Medicine, Faculty of Medicine, Université de Montréal, C.P. 6128, Succ. Centre-Ville, Montreal, QC H3C 3J7, Canada

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BMC Pediatrics 2013, 13:153  doi:10.1186/1471-2431-13-153

Published: 30 September 2013

Abstract

Background

Osteogenesis imperfecta (OI) is a rare genetic disorder that causes increased bone fragility. Living with, caring for, and parenting a child with OI are all highly demanding and challenging. This study is a temporal analysis of the impact of severe OI on the lives of young patients and their parents.

Methods

This study was carried out at the Shriners Hospital for Children, a pediatric orthopedic hospital located in Montreal, Canada. Using qualitative interpretative description, we conducted semi-structured interviews with 24 subjects – 12 young patients diagnosed with severe OI and 12 of their parents. The interview data were subject to a predominantly inductive open thematic analysis and a temporal comparative analysis. We did a retrospective chart review to complement our data collection.

Results

We found that the impact of severe OI on the young patients and their parents was characterized by four themes: 1) Starting at the time of diagnosis, a series of stages shaped life and the return to every day “normal”, 2) Living with OI was full of “ups and downs” throughout life, 3) Every day “normal” life with OI consisted of significant changes for parents and challenges for the whole family, and 4) Living with OI generated some positive experiences.

Conclusion

This study contributes to a better theoretical understanding of the impact of severe OI on families. It also has some practical implications for the development of effective support systems for patients with severe OI and their families.

Keywords:
Osteogenesis imperfecta; Qualitative study; Interpretative description; Parents; Canada