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Transcript:
New research from the Brittle Bone Disorders Consortium (BBDC), a research group of the Rare Diseases Clinical Research Network.
Exploring Caregiver Experiences, Social Support, and Impact on Family Life in Osteogenesis Imperfecta.
This summary is based on a paper published in the journal Families, Systems, and Health on July 10, 2025.
Osteogenesis imperfecta (OI) is a group of inherited connective tissue disorders associated with a wide range of symptoms, including fragile bones that break easily. Not much is known about the psychosocial impact of OI during childhood on caregivers and families.
In this study, researchers explored caregiver experiences, existing social support provided for families affected by OI, and the impact of OI on family life. The team analyzed survey responses from 13 caregivers of individuals with OI to develop themes on the psychosocial impact of OI on the family unit.
Results revealed four themes, including encountering difficult experiences during diagnosis of OI, caregiver well-being and coping, broad family impact, and the existence and further need for social support. Authors note that these findings have implications for child and caregiver well-being and health care professionals during diagnosis, as well as emphasize the need for social support for families affected by OI.
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