Experiences of family caregivers of children and youth with special health care needs in a medical home-connected virtual preparedness intervention.

Abstract

Introduction: Families with children and youth with special health care needs (CYSHCN) have unique considerations for staying safe in disasters and emergencies and regard the child/youth's medical home provider as a trusted information source in these events.

Method: We previously showed improved quantitative metrics of emergency preparedness following a virtual home preparedness intervention (VHPI) in families with CYSHCN recruited from a statewide medical home network. The CYSHCN had technology reliance, mobility needs, intellectual disability, and/or vision/hearing impairment. The VHPI comprised pre-post interviews (n = 170/148), preparedness materials, and individualized referrals for identified needs, coordinated through the medical home. Immediately post-VHPI, participants (n = 143) provided feedback in semistructured interviews, which were explored qualitatively through conventional content analysis. Interviews were conducted from April 2020 to June 2022.

Results: All participants were family caregivers of CYSHCN, primarily mothers (83%). Most (57%) rented their home, and 13% preferred a language other than English. Themes identified from the semistructured interviews included preparedness as a missing piece of routine medical care, expertise and action centered on the child/youth, flexibility and compassion, receptivity to/new awareness about emergency preparedness, changes in confidence/self-efficacy, and benefit of recurrent encounters. Cost, time, and specific health challenges/needs were preparedness barriers. Durable medical equipment providers were a valued preparedness resource for technology-reliant CYSHCN, and households with multiple individuals with disabilities/functional needs were identified as needing more intensive support.

Discussion: The high degree of participant engagement and the many identified, addressable needs suggest that CYSHCN families desire and may benefit from tailored emergency preparedness interventions in the medical home. (PsycInfo Database Record (c) 2026 APA, all rights reserved).