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Developing a Disaster Preparedness Toolkit for Families and Caregivers of Children and Youth with Special Needs

Williams, Selena
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Abstract

Importance: The children and youth with special needs (CYSN) population is historically excluded from disaster preparedness resources despite being more likely to be a victim of a disaster. Objective: This study aimed to create an adaptable disaster preparedness toolkit for health professionals to use with caregivers to ease caregiver burden and increase disaster preparedness. Design: An applied research project compiled and expanded existing disaster preparedness resources for CYSN through semi-structured interviews with health professionals and emergency management experts and a targeted literature review. Participants: Health professionals affiliated with Children's Healthcare of Atlanta (CHOA) with a minimum of one year of experience working with CYSN, and primary caregivers of a CYSN who were 18 years of age or older. All participants volunteered and were recruited via flyer or email channels through the site mentor or designated CHOA site contact. Outcomes and Measures: The primary outcomes were caregivers' perceived usefulness, usability, acceptability, and disaster preparedness following toolkit review, assessed through a researcher-developed survey and analyzed using descriptive statistics. Results: Caregivers evaluated the developed resources and found the state-specific resources especially useful (M=4.78, SD=0.42) and that they would appreciate their child’s therapy team using resources such as social stories in sessions to help their child understand disasters and the possibility for a change in routine (M=4.50, SD=1.32). Conclusions and Relevance: Further studies should research how health professionals implement the resources into practice and the efficacy of an interdisciplinary approach to preparedness. Plain-language summary: This research study sought to fill in the gaps of disaster preparedness efforts and resources in families of children and youth with special needs (CYSN). This study created materials that could be easily adapted to fit families of all kinds, along with creating planning worksheets and checklists that caregivers and parents could complete with the help of their child’s therapy team for a more holistic approach. Overall, caregivers who completed the survey after reviewing the resources found them helpful and educational.

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2026-05-05
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Research Projects
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Keywords
disaster preparedness CYSN CYSHCN pediatrics special needs disaster technologically dependent toolkit evacuation Autism
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