Associate Professor University of Rochester Medical Center Pittsford, New York, United States
Background: Educational support for families managing persistent childhood asthma can improve adherence with preventive medications and reduce morbidity. However, barriers to asthma teaching occur across different healthcare settings. Understanding caregiver experiences of learning about asthma and home care challenges is necessary to ensure that future interventions to support home management are patient-centered. Objective: To assess caregiver experiences learning about childhood asthma, and identify challenges with home management that might benefit from additional support. Design/Methods: We recently completed Telehealth Education for Asthma Connecting Hospital and Home (TEACHH), a pilot randomized trial of hospital-to-home asthma education and support for caregivers and children (5-13y) admitted due to asthma. We enrolled 26 child/caregiver dyads over 1-year, and randomized to TEACHH or Standard Care (SC). After the intervention, we invited caregivers to complete in-depth interviews to explore experiences with asthma education and challenges with home management. Inductive coding approaches were used, with team members reviewing themes and relationships. Results: We interviewed 14 caregivers (9 TEACHH, 5 SC; caregivers 86% female; child demographics include mean age 7.4 yrs, 36% Black, 57% male, 57% public insurance). Caregivers described gradual or delayed asthma diagnoses, with limited teaching after diagnosis (Table 1). Many reported having to ask questions to get necessary information, memories of inconsistent messaging from providers, and ultimately drawing on personal or family experiences to inform home practices. There were three themes relating to challenges with routine management (Table 2). First, caregivers experienced difficulty identifying acute symptoms, worried that their children got sick quickly, and used home pulse oximetry when deciding to give rescue medication. Next, management was difficult when another caregiver was involved and the primary caregiver could not control trigger exposure or medication use in other settings. Finally, caregivers described emotional challenges, and perceived limitations on their child’s ability to lead a normal life because of asthma.
Conclusion(s): Caregivers may benefit from more comprehensive asthma teaching, including after initial diagnosis, to promote understanding of symptom management. Future interventions to support managing childhood asthma should also consider ways to engage non-primary caregivers and acknowledge the emotional experience of asthma.
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