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