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