Navigating North Carolina’s Medicaid transformation: Caregivers’ perspectives through a family-centered lens

Background Medicaid provides health insurance for 40% of the United States (US) pediatric population. There is an increasing trend among states to transition from a fee-for-service model for Medicaid reimbursement to relying on risk-based delivery systems using Managed Care Organizations (MCOs). In 2021, most beneficiaries in North Carolina (NC) transitioned to one of five MCOs from Medicaid Direct. While research has examined the effects of these transitions, less is known on the impact of MCOs on the experiences of caregivers of children getting care for themselves and their children. This study aimed to explore the experiences of caregivers following the NC Medicaid Transformation, both in enrolling and accessing care for themselves, when applicable, and for their children. Methods We conducted a qualitative descriptive study to examine experiences of caregivers of children during the NC Medicaid Transformation. We identified participants from clinic sites and health services organizations in North Carolina. Nineteen caregivers participated in semi-structured interviews or a focus group. We conducted rapid qualitative analysis of transcripts for timely, action-oriented analysis. Rapid qualitative analysis involved developing a summary template with inductive domains from the interview guide categories. Results Among caregivers, all were mothers, and the majority resided in urban areas. Eleven caregivers were adult Medicaid beneficiaries in addition to their child receiving Medicaid. Caregivers described a variety of experiences and three themes were identified: increased obstacles among families with health conditions requiring additional care and non-English speakers; crucial role of clinical staff in navigating the transformation and accessing care; satisfaction with MCOs despite challenges. Conclusions Increasing access to specialty care by strengthening network adequacy standards, investing trained support staff within MCOs on how to best serve families with health conditions requiring additional care and non-English speaking families, and reimbursing clinical staff who are already performing a care management role, could positively impact families receiving care through Medicaid MCOs.