379 - Families’ Perspectives on the Needs and Challenges of Pediatric Asthma Care

Asthma is a common chronic disease in children. Its effective management with daily treatment and lifestyle changes can place undue demands and challenges on children and their families.

Objective:

To understand the needs and challenges families face in managing their child’s asthma.

Design/Methods:

Currently ongoing since November 2021, this study enrolls children 5-11 years old presenting with an acute asthma exacerbation to the emergency room at a tertiary care children’s hospital. Parents complete a demographic questionnaire and the Pediatric Asthma Control and Communication Instrument – Emergency Department version (PACCI-ED) which collects information on asthma history, severity and management. The PACCI-ED responses are scored to correspond to asthma severity levels: controlled, partly controlled or uncontrolled (mildly, moderately, and severely). We also record families’ responses to two open-ended questions on their needs and challenges in managing asthma, reported here using thematic analysis.

Results:

Of the 61 patients, the majority were male (69%), non-Hispanic black (80.3%), with public insurance (62.3%) (Table 1).  The majority have a primary care provider (Table 1).  Based on the PACCI-ED, over half of the study population had either mildly (26.2%) or severely (26.2%) uncontrolled asthma (Table 1). Among consented participants, 57 caregivers provided responses to the two open-ended questions. Six central themes emerged from content analysis of the qualitative transcripts: medication availability and administration, environmental triggers, limiting activities, school policies, employment issues, and the stress (emotional toll and sleeplessness) associated with caring for a child with asthma. Medication accessibility (insurance coverage, cost, lack of medication/equipment) and administration (frequency, type of medication) were recurring concerns and seen across all asthma severity levels (Figure 1). School policies on medication administration and parents missing work risking employment were reported by parents of children with mildly to severely uncontrolled asthma.

Conclusion(s):

Though the study was limited to patients cared for in the emergency room, it provides insight into the different obstacles that patients and their families encounter. This interim analysis highlights an overwhelming need for improving modifiable challenges such as medication accessibility and school policies to lessen undue burden on families in caring for a child with asthma.