Cascading Barriers to Care: Marginalized Caregivers’ Experiences In Navigating Healthcare and Social Services and Their Effects on Family Well-Being

Background: Caregivers play a central role in navigating healthcare and social service systems to meet the needs of their children and family. Early access to care is associated with improved physical, social, behavioral, and emotional well-being. However, many caregivers experience barriers to care across multiple-levels of health and human services. Despite growing attention to service access inequities, little is known about how caregivers navigate multi-level barriers, how these barriers further impede care, and the consequences of these barriers for caregivers, children, and family well-being.

Methods: We conducted 33 semi-structured interviews with racially diverse caregivers in a large Midwestern state in the USA. Participants were recruited using social media advertising and outreach through community organizations. Interviews explored caregivers’ experiences navigating healthcare and social services, including services sought, barriers and facilitators to care access, and their effects on the family system. Interviews were held via Zoom, transcribed, and independently coded and analyzed by two researchers using Braun & Clarke’s approach to thematic analysis. Findings were analyzed and interpreted using Bronfenbrenner's Ecological Framework.

Findings: Results identified individual, interpersonal, organizational, and structural factors that impeded access to services. Individual-level barriers included language challenges and limited knowledge of the service system. Interpersonal barriers encompassed caregiver-provider mismatch, poor communication, stigma or judgement, and dismissal or invalidation of needs. Organizational barriers involved stringent access criteria, insurance-based discriminations, long-waitlists, limited follow-up, fragmented services, staff turnover, provider shortages, and delays in service provision. Structural barriers included rural service gaps, transportation challenges, systemic inequities, and culturally appropriate services.

Caregivers described how barriers often produced cascading effects, where initial obstacles, such as long waitlists, communication breakdown, or service denial, led to additional barriers across the system, further delaying or preventing access to care. These multilevel barriers had effects on families, including caregiver burnout, emotional distress, role strain, and disruptions to work-life balance. Caregivers also reported negative consequences for children, including unmet needs, educational and health impacts, and involvement with child welfare systems. Repeated encounters with barriers contributed to disengagement from services and heightened institutional mistrust.

Despite these challenges, caregivers identified facilitators across ecological levels. Individual-level facilitators included persistence, proactive system navigation, finding alternatives, changing providers, and self-advocacy. Interpersonal facilitators encompassed supportive relationships, peer connections, and responsive provider communication. Organizational facilitators included effective referrals and provider responsiveness. Community and structural facilitators involved access to community-based resources and culturally familiar providers. These strategies functioned as critical mechanisms in mitigating cascading effects and sustained engagement with services.

Conclusion and implications: Findings revealed how multilevel barriers within healthcare and social service systems generate cascading obstacles to care, contributing to service denial and adverse consequences for caregivers and children. Caregivers relied on persistence, self-advocacy and proactive system navigation to obtain needed services. Recognizing and strengthening these caregiver-driven mechanisms is critical in improving cross-cultural navigation of health and social service systems. Advancing equitable access requires culturally responsive, relationship-centered services that strengthen caregiver self-efficacy and resilience. Additionally, practitioners and policymakers must address barriers across individual, interpersonal, organization, and legislative levels.