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Hurricane Preparedness of Children and Youth with Special Healthcare Needs and Medical Complexity: A Patient Centered
J Benjamin1, C Sehgal2, S Kumar2
1Department of Pediatrics (J Benjamin), Texas Children's Hospital and the Huffington Department of Education Innovation and Technology, Baylor College of Medicine, Houston, Tex; Director of Technology (CRIS) Center for Research Innovation and Scholarship in Health Professions Education (J Benjamin).
Objectives:
Children and Youth with Special Healthcare Needs (CYSHCN), especially Children with Medical Complexity (CMC), face significant risks during natural disasters. We explored caregivers' perceptions and knowledge of disaster preparedness.
Methods:
We conducted a mixed-methods study to gain a deeper understanding of caregiver hurricane preparedness needs. A survey assessed hurricane readiness and generated minimal and desired preparedness scores using pertinent items. Geospatial mapping and Centers for Disease Control and Prevention (CDC) Social Vulnerability Index (SVI) scores (0-1 scale) identified at-risk families. Chi-square test analyzed associations between caregiver language (English Vs Spanish) and individual dichotomous preparedness items. Wilcoxon rank-sum test compared preparedness scores and caregiver confidence between groups. Focus group data were analyzed using an interpretivist approach to derive themes.
Results:
We achieved a 95% response rate (n = 216; 71% English, 29% Spanish). Although 78% of respondents experienced a previous disaster and 20% required evacuation, very few anticipated a future event. Around 20% reported awareness of shelters, planned for safe evacuation and completed an Emergency Information Form (EIF); 55% lacked safe storage of formula. Spanish-speaking families were significantly less prepared with lower minimal preparedness scores: 1 ([IQR 0.5-2.5] vs 3 [IQR 1.5-3.5], P < .001) and desirable preparedness scores: 1.5 ([IQR 1-3.75] vs 3.3 [IQR 2-5], P < .001) and had lower self-reported confidence 3 ([IQR: 1-4] vs 4 [IQR: 3-4]; P < .001) in managing their child during a disaster. Parents expressed an ongoing burden and fear of being separated from their child during disasters.
Conclusions:
Our study indicates that most families with CYSHCN are underprepared for managing a disaster, demonstrating a need for targeted intervention.
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