JMIR Publications

ABSTRACT

Background:

Childhood asthma places substantial burdens on caregivers, particularly in communities facing structural barriers to healthcare access. Electronic health record (EHR) systems are primarily designed for clinical workflows, limiting their usefulness for caregivers managing their child’s asthma.

Objective:

This qualitative study aimed to elicit primary caregivers’ perspectives on managing childhood asthma and their experiences with EHRs to inform the development of a community- and family-centered medical platform.

Methods:

We conducted in-depth, semi-structured interviews with 15 Black female caregivers living in the greater Philadelphia area. Recruitment was conducted in partnership with Philly Thrive, a community-based organization. Thematic analysis was used to analyze the data.

Results:

Two themes were generated: (1) Lived Experiences of Managing Childhood Asthma in Families and Communities, highlighting the emotional, practical, and social dimensions of asthma caregiving; and (2) Caregivers’ Perceptions and Experiences of Navigating Patient Portals for Childhood Asthma, capturing how caregivers selectively access EHRs, the barriers they encounter, and their recommendations for improvement.

Conclusions:

Effective childhood asthma management requires information systems that honor caregiver expertise, provide transparent and accurate documentation, and actively work to reduce epistemic injustice. Community-centered platform design should integrate caregiver knowledge, environmental data, and child-appropriate tools to support equitable asthma care.