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Children and youth with special healthcare needs are at risk for severe consequences during infectious disease emergencies. Messages for parents and caregivers from trusted sources, via preferred channels, that contain the information they need, may improve health outcomes for this population. In this mixed methods study, we conducted a survey (N = 297) and 80 semistructured interviews, with 70 caregivers of children and youth and 10 young adults with special healthcare needs, between April 2018 and June 2019 in Pennsylvania. The survey presented 3 scenarios (ie, storm, disease outbreak, radiation event); the interviews included questions about storms and an outbreak. This article addresses only the disease outbreak data from each set. Participants were recruited through convenience samples from an urban tertiary care children's hospital and practices in a statewide medical home network. In this article, we summarize the preferred information sources, channels, and content needs of caregivers of children and youth with special healthcare needs during an infectious disease emergency. Nearly 84% of caregivers reported that they believe their child's doctor is the best source of information. Other preferred sources include medical experts (31%); the US Centers for Disease Control and Prevention (30%); friends, family, and neighbors (21%); and local or state health and emergency management (17%). Pediatric healthcare providers play an important role in providing information to parents and caregivers of children and youth with special healthcare needs during an infectious disease emergency. Public health agencies can establish health communication plans that integrate medical practices and other reliable sources to promote the dissemination of accurate information from trusted messengers.

Families with children who have access and mobility challenges, chronic illness, or intellectual or developmental disabilities require targeted messages before, during, and after disasters to ensure that they understand risks to their children's health and can take measures to avoid harm and build resilience. A scoping review was conducted to assess current evidence for optimal ways to address the disaster information needs and communication preferences of families with children and youth with special healthcare needs. The disaster information needs of such families remain understudied, with few published evidence-based practices. Much of the relevant research focuses on information content, specifically the preparedness needs of these families; disaster recovery information for them remains a major gap. The few studies that have been performed suggest that parents with children and youth with special healthcare needs require additional information, education, and training to develop an effective disaster preparedness plan for their children. They are also largely unaware of schools' disaster plans, and schools are often unable to meet parents' expectations for timely, accurate information during a disaster. Several guidance documents highlighted the importance of completing an emergency information form before an event. Several studies suggested that one-on-one education or counseling was a strategy for encouraging preparedness planning; others highlighted potential value in incorporating families directly into disaster risk reduction planning. Evidence about channel preferences and their effectiveness in this population was generally lacking. Future studies should expand the evidence basis for optimal communication during all disaster phases both with parents of children and youth with special healthcare needs and with children directly.