JMIR Publications

ABSTRACT

Background:

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

Objective:

This qualitative study explores the experiences of parents in CMC care with a focus on parents from underserved communities, shedding light on the challenges they face and opportunities for future digital health innovations. The uniqueness of this study lies in focusing on a vulnerable population. By examining the challenges faced by this group, the research aims to provide mHealth solutions and actionable recommendations that can ease the caregiving burden for parents of CMC.

Methods:

We conducted semi-structured interviews with 19 parents of CMC. Most participants were African American (n=13), with the remainder identifying as Hispanic (n=3) or White (n=3). The caregivers' ages ranged from 30 to 49 years, with a near-equal gender split of 10 female and 9 male participants. In terms of family structure, the sample included mothers, fathers, and one uncle, with all caregivers having one child with CMC, except for one caregiver who had twins. The educational backgrounds varied, with two participants holding master's degrees, 13 having bachelor's degrees, and three having completed high school. Most of the children in the study were boys (n = 15), and the largest age group was 12-14 years old. All interviews were conducted over Zoom and were audio recorded. Each interview lasted approximately 45 minutes. We used inductive thematic analysis to develop themes by comparing the experiences, suggestions, and challenges voiced by participants. A line-by-line coding approach was employed to capture detailed insights from each interview.

Results:

The children in this study had a variety of chronic conditions, each experiencing at least three physical, emotional, or behavioral health challenges, highlighting the complexity of care required for CMC. An inductive thematic analysis revealed three key themes related to caregivers’ experiences in CMC care: (1) virtual care, (2) caregiver needs and support, and (3) CMC-specific needs and support. The theme "Virtual Care" focused on the use of digital technologies for remote healthcare services, where caregivers shared both challenges and suggestions for improving virtual care processes. "Caregiver Needs and Support" identified essential tools and resources that parents require, emphasizing the need for accessible and user-friendly technologies that provide emotional support, guidance, care coordination, and timely health information. The third theme, "CMC Needs and Support," stressed the need for technologies specifically designed for CMC as users to address the unique, individualized needs of CMC patients, with parents highlighting the importance of tools that enhance health outcomes and provide child-centered care.

Conclusions:

The current study highlights several insights into the digital health needs of CMC and their caregivers. Parents identified a clear and urgent need for telehealth features tailored to better support the unique needs of CMC care. Despite the growing adoption of digital health tools, 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 the integration of user feedback to continuously refine and enhance digital health solutions. By addressing these gaps, technology can better empower caregivers and improve the overall healthcare experience for families of CMC. Ultimately, the study provides valuable direction for future digital health innovations aimed at supporting this population.