Lasting Effects of Nonaccidental Trauma Accusations in Families of Children with Osteogenesis Imperfecta: Parent Perspectives

Abstract

Osteogenesis imperfecta (OI) is a rare genetic condition, estimated to affect 3-7 out of 10,000 individuals. Clinical symptoms of the most common type of OI include short stature, bone deformities, connective tissue abnormalities, and most notably, the presence of fractures with minimal to no trauma. Because of the nature of OI and its overlap with symptoms of nonaccidental trauma (NAT), caregivers of children with an underlying diagnosis of OI can be accused of child abuse. There is a gap in the literature regarding the psychosocial impacts on caregivers of children with OI being accused of NAT. While some studies report that these allegations are traumatic and impact trust in healthcare providers, there is limited knowledge regarding family experiences, perspectives, and impacts on a wider scale in this community. We developed a survey for adults in the United States who have been accused of NAT where the underlying cause of injury in the child was OI. Caregivers of children with OI were asked about the details of the accusation and the lasting effects of those accusations on different areas of their life. The most common accusation setting was in emergency departments, with 75% of accusations coming from emergency department physicians. Additionally, 79% of respondents believed that healthcare providers knew none or very little about OI, and over 50% of respondents believed that healthcare providers were extremely or somewhat incapable of caring for patients with OI. Reassuringly, we found no difference between accusation frequencies or lasting negative effects between ethnicities, rurality, or income. These results suggest that there is a need for educational materials for physicians regarding all aspects of OI, but especially clinical presentation and differentiating between OI and NAT, in emergency medicine and pediatric clinical settings.