Abstract
BACKGROUND: Child abuse and neglect, once viewed as a social problem, is now an epidemic. Moreover, health providers agree that existing stereotypes may link racial and social class issues to child abuse. The broad adoption of electronic health records (EHRs) in clinical settings offers a new avenue for addressing this epidemic. To reduce racial bias and improve the development, implementation, and outcomes of machine learning (ML)-based models that use EHR data, it is crucial to involve marginalized members of the community in the process. OBJECTIVE: This study elicited Black and Latinx primary caregivers' viewpoints regarding child abuse and neglect while living in underserved communities to highlight considerations for designing an ML-based model for detecting child abuse and neglect in emergency departments (EDs) with implications for racial bias reduction and future interventions. METHODS: We conducted a qualitative study using in-depth interviews with 20 Black and Latinx primary caregivers whose children were cared for at a single pediatric tertiary-care ED to gain insights about child abuse and neglect and their experiences with health providers. RESULTS: Three central themes were developed in the coding process: (1) primary caregivers' perspectives on the definition of child abuse and neglect, (2) primary caregivers' experiences with health providers and medical documentation, and (3) primary caregivers' perceptions of child protective services. CONCLUSIONS: Our findings highlight essential considerations from primary caregivers for developing an ML-based model for detecting child abuse and neglect in ED settings. This includes how to define child abuse and neglect from a primary caregiver lens. Miscommunication between patients and health providers can potentially lead to a misdiagnosis, and therefore, have a negative impact on medical documentation. Additionally, the outcome and application of the ML-based models for detecting abuse and neglect may cause additional harm than expected to the community. Further research is needed to validate these findings and integrate them into creating an ML-based model.