“It’s a Production”: Bringing Children With Medical Complexity to In-Person Clinic Visits

Abstract

Caring for children with medical complexity poses significant challenges for parents/caregivers. Outpatient clinical visits are crucial for these children. This qualitative study (2/2022-4/2022) conducted in North Carolina involved semi-structured interviews with 23 caregivers of children with medical complexity (15 English; 8 Spanish) about their in-person visit experiences for their children. The purposive sample included children of Black race, rural residence, age >10 years, telehealth nonusers, and those with ≥10 clinic appointments/year, and Spanish-speaking caregivers. Data were transcribed and analyzed using thematic analysis. Four themes emerged: (1) logistical challenges of in-person visits for caregivers exist; (2) in-person visits negatively affect families and cause caregiver stress; (3) caregivers use personal strategies to optimize in-person visits; and (4) individualized and flexible outpatient care is needed. Health care providers and health systems should consider the unique needs of children with medical complexity and their families, offering choices to minimize challenges caused by in-person visits.