Amplifying the Voices of Parents From Underserved Communities in Digital Health for Children With Medical Complexity:...

Children with medical complexity experience multiple chronic conditions that demand intensive, ongoing, and highly coordinated care, often placing a burden on their parents, who serve as primary caregivers. Digital health offers a promising solution for enhancing care coordination, monitoring, and communication. However, its effectiveness depends on it being developed as a user-centered solution that incorporates feedback from parents, who are the primary decision-makers and advocates in their children's health care. By prioritizing the voices of parents, especially those from underserved communities, during the design and implementation of digital health solutions, these tools can more effectively meet their unique needs. This ensures that digital health solutions are effective in real-world caregiving scenarios.

This qualitative study explored the experiences of family caregivers of children with medical complexity, with a focus on parents from underserved communities, shedding light on the challenges they face and opportunities for future digital health innovations. Underserved communities in this study are defined as families experiencing structural barriers to accessing specialized care for children with medical complexity, often necessitating additional support from nonprofit or community-based organizations.

We conducted semistructured interviews with 19 parents of children with medical complexity from underserved communities. All interviews were conducted over Zoom and were audio recorded. We conducted an inductive, reflexive thematic analysis using an iterative codebook to support analytic transparency.

The children in this study had a variety of chronic conditions, each experiencing at least 3 chronic, long-lasting medical conditions. An inductive thematic analysis revealed two broader key themes: (1) virtual care and (2) consumer mobile health (mHealth) apps. The "virtual care" theme focused on the use of remote health care services and communication with health care providers, highlighting parents' challenges and needs for enhancing virtual care. The "consumer mHealth apps" theme identified needs and challenges in the care management of children with medical complexity that could be addressed through consumer mHealth apps.

This study highlights several insights into the digital health needs of children with medical complexity and their family caregivers. Parents identified a clear and urgent need for telehealth features tailored to better support the unique needs of care for children with medical complexity. Despite the growing adoption of consumer mHealth apps, caregivers reported ongoing challenges, underscoring the necessity for user-centered solutions that are specifically designed with their needs in mind. Future research and development should focus on integrating user feedback to continuously refine and enhance digital health solutions. By addressing these gaps, technology can better empower caregivers and improve the overall health care experience for families of children with medical complexity. Ultimately, this study provides valuable guidance for future digital health innovations to support parents of children with medical complexity from underserved communities.