Abstract / Summary
Background: Childhood asthma places substantial burdens on caregivers, particularly in communities facing structural barriers to health care access. Patient portals, the patient-facing component of electronic health record 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 patient portals to inform the development of a community-centered and family-centered medical platform.
Methods: The authors conducted a qualitative study using in-depth, semistructured interviews between July and October 2024 with 15 Black primary caregivers of children with asthma living in the Greater Philadelphia area. Participants were recruited through purposive sampling in partnership with Philly Thrive, a community-based organization. Interviews were conducted both in person and virtually and lasted 30 to 90 minutes. A semistructured guide with 3 core questions explored experiences with managing childhood asthma, interactions with medical documentation and patient portals, and recommendations for redesigning patient portals. The number of interviews was determined by data richness and fulfillment of study aims. Data were analyzed using reflexive thematic analysis, guided by the Standards for Reporting Qualitative Research.
Results: Two themes were generated. Theme 1, lived experiences of managing childhood asthma in families and communities, revealed that caregiving involves profound emotional work, daily routines, and community knowledge sharing that health systems largely do not recognize or support. Theme 2, caregivers' perceptions and experiences of navigating patient portals for childhood asthma, revealed that caregivers used portals selectively at key care moments rather than routinely. Persistent barriers included confusing medical terminology, outdated medication records, and limited communication channels. Caregivers recommended direct provider messaging, integration of environmental trigger data, streamlined medication refill processes, and age-appropriate portal features to support children's gradual self-management.
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.