Community Caregivers' Perspectives on Health IT Use for Children With Medical Complexity: Qualitative Interview Study

Children with medical complexity represent a unique pediatric population requiring extensive health care needs and care coordination. Children with medical complexities have multiple significant chronic health problems that affect multiple organ systems and result in functional limitations and high health care needs or use. Often, there is a need for medical technology and total care for activities of daily living, much of which is provided at home by family and caregivers. Health IT (HIT) is a broad term that includes various technologies, such as patient portals, telemedicine, and mobile health apps. These tools can improve the care of children with medical complexity by enhancing communication, information exchange, medical safety, care coordination, and shared decision-making. In this study, we identified children with medical complexity as children aged <21 years who have >3 chronic health conditions. Community caregivers contribute to the care management of children with medical complexity, serving as advocates and coordinators, primary sources of information about children's needs, and facilitators of access to care. They are often the first point of contact for the families of children with medical complexity, particularly in vulnerable communities, including families in rural areas, low-income households, and non-English-speaking immigrant populations.

This study aims to introduce the HIT needs and preferences for children with medical complexity from the perspective of community caregivers. By including their perspective on HIT development, we can better appreciate the challenges they face, the insights they offer, and the ways in which they bridge gaps in care, support, and resources.

We conducted semistructured interviews (n=12) with formal community caregivers of children with medical complexity populations from a parent advocacy network on the US East Coast. Interviews were audio recorded via Zoom and then transcribed. An inductive thematic analysis was conducted to reveal HIT challenges and preferences for improving the care of children with medical complexity.

We categorized the interview results into themes and subthemes. There are four main themes: (1) telehealth transforming care for children with medical complexity during the COVID-19 pandemic, (2) suggested tools and technologies for care for children with medical complexity, (3) HIT feature preferences, and (4) transition to adult care. Each theme had multiple subthemes capturing all details related to design features of needed technologies.

The study emphasizes the need to develop and enhance HIT for the care of children with medical complexity. The identified themes can serve as design guidelines for designers by establishing a foundation for user-centered HIT tools to effectively support children with medical complexity and their families. Telehealth and mobile health apps could improve care management and quality of life for children with medical complexity.