260 - Family Experiences of Care for Children with Medical Complexity in a Largely Rural Catchment Area: A Qualitative Study

Poster Number: 260
Publication Number: 260.496

Background: Children with medical complexity are at risk for adverse medical, developmental, and psychological outcomes. Multidisciplinary complex care programs bridge the gap between PCP and specialists, coordinate care and provide social support. While such programs are often found in large urban academic children’s hospitals they are less common in rural areas, raising significant equity issues for families who live in these communities.

Objective: We sought to describe the experience of accessing care for guardians of children with complex medical needs, understand what is important to families about their care, and elicit family-generated solutions to inform the development of a multidisciplinary complex care program in a rural catchment area.

Design/Methods: From March 2022-March 2023 we interviewed guardians of pediatric patients with complex medical needs - defined as children seen by 3 or more pediatric subspecialists excluding those receiving oncology services. Participants completed a semi-structured phone or virtual interview which was recorded and transcribed for analysis. Using grounded theory and an iterative approach to analysis, we identified salient themes and placed them at levels of the socio-ecological model (SEM). Interviews were conducted until we observed thematic saturation.

Results: Among 19 interviews, guardians identified challenges at every level of the SEM. (Table 1) At a system level, they reported that care communication is often fragmented and logistical barriers makes accessing care difficult. They expressed isolation in their communities both from resources and from families with similar experiences. Care plans often seemed unrealistic and, on an individual level, provider interactions with children sometimes lacked compassion and empathy. Guardian-generated solutions included: enhanced coordinated communication between providers and guardians, the use of telehealth and electronic patient portals to improve communication and care, peer support groups, collaboration with guardians on care plans to ensure feasibility and sustainability, and direct interaction with the child. (Table 2)

Conclusion(s): Guardians of children with medical complexity experience challenges with accessing care for their children. As experts in their own experience, guardians have provided actionable solutions to improve the care of children with medical complexity in a rural area. Other healthcare systems that serve children in rural areas may learn from the experience of our families to improve regional care for children with medical complexity.