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Table 1 Themes and subthemes from the thematic analysis of the impact of severe OI on young patients and their parents

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

Themes Subthemes
1) Starting at the time of diagnosis, a series of stages shaped life and the return to every day “normal” Stage 1: Parents experience the diagnosis as an earthquake
Stage 2: Parents come to an acceptance of the diagnosis
Stage 3: Parents gradually redefine a “new normal” life with OI
2) Living with OI was full of “ups and downs” throughout life Times of crisis alternated with more calm stable moments
Parents and patients alternated between negative and positive feelings
3) Every day “normal” life with OI consisted of significant changes for parents and challenges for the whole family Changes guided by a fear of fracture and a concern about safety
Changes related to the increased burden of care
Patients tended to talk about challenges rather than changes
Changes and challenges affected the whole-family, including siblings and the extended family
4) Living with OI generated some positive experiences