P3.B038: Be Hurricane Ready : Developing a Holistic Patient-Centered Approach to Hurricane Preparedness

Background: As a medical home for children and youth with special health care needs (CYHSCN) we recognize the significant risks imposed by hurricanes.The purpose of our study is to explore caregivers’ understanding of disaster preparedness and to gain contextual insights from their experiences and challenges to develop an intervention for families living in flood prone areas.

Methods: A 38-item survey developed through iterative process with key stakeholders was administered to CYSHCN caregivers, defining minimal and satisfactory preparedness scores (Fig.1). Patient addresses were plotted using geospatial mapping calculating the CDC’s social vulnerability index (SVI) scores ranging from 0-1, with higher scores indicating increased vulnerability. Chi-square test analyzed categorical data, two sample t-test analyzed group differences in continuous data. Focus group interviews of 18 participants explored CYSHCN caregivers’ perspectives on disaster preparedness with intentional sampling of 8 Spanish speaking families to gain in-depth understanding. 3 authors derived themes and subthemes from a priori code using an interpretivist approach to thematic analysis of transcripts.

Results: We achieved 95% survey response rate (153 English and 63 Spanish-speaking families), patient age ranged from 4 months to 21 years, 57% were female. 82% technology dependent, 78% experienced a hurricane, with 56% being affected (requiring evacuation or sustaining loss). 74% reported confidence in their ability to manage their child, with 41% anticipating a future disaster. Spanish speaking families had significantly lower preparedness scores (42 vs 55, p<.003) and lower satisfactory scores (.36 vs .45, p< .02) than English speaking families. Caregivers who met satisfactory preparedness criteria reported being more confident of managing their child (.34 vs. .35, p< .001). SVI scores ranged from .01-.9 (median .6), >55% of respondents had SVI >.56. With triangulation of data from interviews 5 major themes were identified (Fig. 2) with parents facing an incessant burden for their child’s safety with the fear of losing their child being a motivating factor. Our results informed the development of step-by-step approach to hurricane preparedness enrolling 176 caregivers with desirable results.

Conclusion: Our study highlights the impact of natural disasters on CYSHCN and the emotional burden imposed on caregivers. Most families are not well prepared, with Spanish-speaking families requiring targeted intervention. Families desired peer support and easy to follow instruction, informing the development of our current intervention.