Hurricane Preparedness of Children and Youth with Special Healthcare Needs and Medical Complexity: A Patient Centered Approach.

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.