A Virtual Home Preparedness Intervention Centered on Children and Youth With Special Health Care Needs.

OBJECTIVE: Children and youth with special health care needs (CYSHCN) require additional considerations for staying safe in emergencies. Our team of clinicians and preparedness professionals developed and tested a virtual home preparedness intervention (VHPI) in families with CYSHCN receiving care in a statewide medical home network. METHODS: The VHPI comprised 1) a pre/post interview covering fire safety, emergency evacuation, sheltering in place, and informing emergency responders of the child/youth's care needs; 2) a resource packet containing emergency planning templates and information on local supports; and 3) individualized referrals coordinated through the medical home/community partners. Eligible CYSHCN had medical technology reliance, physical/mobility needs, communication/intellectual challenges, and/or vision/hearing loss. Preparedness was measured as pre/post affirmed rates of 19 items from the interview and as mean composite scores of these items; associations were evaluated using generalized estimating equations-based regression for repeated measures. RESULTS: The pre and post-VHPI interviews were completed by 170 and 148 participants, respectively. Significant individual-item gains included having a current Emergency Information Form for the child/youth (31% [pre] to 47% [post] affirmed) and assembling an evacuation kit (50% to 68%). The mean preparedness score was 13.33/19 items affirmed at baseline and increased to 14.96 post-VHPI (P < .01). In the adjusted regression model, the post-intervention preparedness score remained significantly higher than pre-VHPI, with mean increases of 1.22 preparedness steps affirmed for homeowners and 1.85 for renters. CONCLUSIONS: Preparedness scores improved post-VHPI in families with CYSHCN. Future work should address incorporating the VHPI into care visits in the medical home.

Home-Based Emergency Preparedness for Families of Children and Youth With Special Healthcare Needs: A Scoping Review.

Children and youth with special healthcare needs (CYSHCN) are at disproportionate risk of harm from widespread disasters and from life-safety emergencies. These risks may be mitigated by providing preparedness training and support to family caregivers. We conducted a scoping review to identify and map the scholarly literature on home-focused preparedness of families with CYSHCN. Our search strategy yielded 22 relevant articles; 13 pertained to life-safety emergencies, 5 centered on widespread disasters, and 4 addressed preparedness on multiple scales. Approaches to measure or attempt to improve emergency preparedness levels in CYSHCN and their families were diverse and included interviews and focus groups; didactic, video-based, or side-by-side instruction; simulated medical crises; and provisioning of emergency kits. For the studies that involved an intervention (n=15, 68%), several proxy indicators of preparedness were used, including caregiver knowledge, skill, or comfort level with managing emergencies that could affect their CYSHCN; completion of preparedness tasks; and reduction in adverse clinical outcomes. Despite the varied methodologies, prevailing themes in the studies were that family caregivers of CYSHCN felt underprepared for emergencies and disasters, desired training to improve their preparedness at home, and benefited from such trainings, at least in the short term, across domains of self-efficacy, skill, and health outcomes of their CYSHCN. Although more research is needed to compare preparedness interventions and evaluate the durability of these interventions in larger, more diverse samples of CYSHCN and their families, our findings support incorporating preparedness training into preventive care encounters and the hospital-to-home transition.