“The elephant in the room;” a qualitative study of perinatal fears in opioid use disorder treatment in Southern Appalachia

BACKGROUND: Diagnoses of perinatal opioid use disorder (OUD) continue to rise in the United States. Patients and providers report obstacles to OUD treatment access. Difficulties include legal ambiguity related to Social Services notification requirements following a birth to people using opioids or in medication-assisted treatment for OUD. METHODS: Through semi-structured interviews, participant-observation, and a focus group conducted in a mostly rural, region of the Southern United States (where perinatal OUD is more prevalent), patients’ and providers’ perspectives about perinatal substance use treatment were initially sought for a larger study. The findings presented here are from a subset analysis of patients’ experiences and perspectives. Following ethics review and exemption determination, a total of 27 patient participants were opportunistically, convenience, and/or purposively sampled and recruited to participate in interviews and/or a focus group. Data were analyzed using modified Grounded Theory. RESULTS: When asked about overall experiences with and barriers to accessing perinatal substance use treatment, 11 of 27 participants reported concerns about Social Services involvement resulting from disclosure of their substance use during pregnancy. In the subset analysis, prevalent themes were Fears of Social Services Involvement, Preparation for Delivery, and Providers Addressing Fears. CONCLUSIONS: Perinatal OUD patients may seek substance use treatment with existing fears of Social Services involvement. Patients appreciate providers’ efforts to prepare them for this potential reality. Providers should become aware of how their own hospital systems, counties, states, and countries interpret laws governing notification requirements. By becoming aware of patients’ fears, providers can be ready to discuss the implications of Social Services involvement, promote patient-centered decision-making, and increase trust. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12884-021-03596-w.