Parent Perspectives of Suspected Child Abuse in Osteogenesis Imperfecta

Abstract

Osteogenesis imperfecta (OI) is a rare genetic disorder characterized by weakened bones and frequent fractures. Cases of physical child abuse also often present with fractures as a main finding and there are reported cases in which individuals with a known or unknown diagnosis of OI are suspected to be victims of physical child abuse. Here, we explore the long-term impacts on parents who have been falsely accused of physical child abuse when the true cause of fractures or injuries was OI. Participants were recruited through the OI Foundation research registry. Nine respondents met eligibility criteria and participated in semi-structured interviews. Questions included the topics of the presentation of OI, the accusation of physical child abuse, previous exposure to OI, experience with Child Services, emotional and mental impact, and resources. Qualitative analysis identified even themes, including loss of trust in organizations and institutions set in place to protect children, various coping mechanisms, abuse accusations exacerbating stress and strain on the entire family unit, caregivers becoming advocates for their child with OI, families having varied previous experiences with OI, families wanting providers to spend more time exploring differentials, and families wanting to ensure other families have the necessary resources. This study documented and validated experiences of families who have been falsely accused of physical child abuse in place of OI, and this further adds to the research in the OI community.