Spanish-Speaking Latino Immigrant Caregivers of Children and Youth with Special Health Care Needs

Objective To explore caregiving experiences among Spanish-speaking Latino immigrant caregivers of children and youth with special health care needs (CYSHCN) in the southeastern United States. Methods We conducted 30 semi-structured interviews in Spanish with Latino immigrant caregivers of CYSHCN recruited from two South Carolina pediatric clinics. Interviews explored caregiving experiences, interactions with clinicians, and barriers to care. Interviews were analyzed using thematic analysis informed by grounded theory and constant comparison. Results Caregivers were mostly female (93%) with an average age of 35 years. Analysis yielded 6 key themes and several subthemes. Faith provided a framework for caregiving, helping caregivers make meaning of suffering and sustain hope. Caregivers assumed primary responsibility for their child's care, actively seeking information and developing strategies to coordinate and safeguard care. These demands reshaped their health, daily lives, and sense of self. Quality of communication strongly influenced trust and partnership with clinicians. Access to health care created a sense of relief, safety, and hope, particularly when contrasted with limited care in caregivers' countries of origin. Structural barriers, including language barriers, insurance, high costs, immigration concerns, and disrupted employment, destabilized access to care and financial stability. Conclusions Latino immigrant caregivers of CYSHCN assumed extensive medical, emotional, and care-coordination responsibilities while navigating structural barriers that affected access to care and family well-being. Trusting relationships with clinicians and faith were important sources of support. Care models should proactively identify unmet needs, recognize caregiver expertise, ensure language support, strengthen clinician communication and continuity, reduce navigation burden, and address caregiver well-being.