Communication Preferences of Parents and Caregivers of Children and Youth With Special Healthcare Needs During a Hypothetical Infectious Disease Emergency.

Abstract

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.