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CPHRC Awarded CDC Grant to Improve Disaster Communication with Families of Children With Special Health Care Needs

In September of 2016, the CPHRC was awarded a 3-year CDC grant to study the disaster communication needs of families of children with special health care needs, including autism spectrum disorders.

Children and youth with special health care needs (CYSHCN), such as access and mobility challenges, chronic illness, intellectual and developmental disabilities, and other communication difficulties, require targeted messages before, during, and after disasters to ensure that they fully appreciate the risks to their health and safety and can take measures to avoid harm. The CPHRC will collaborate with the AJ Drexel Autism Institute at Drexel University, the Pennsylvania Chapter of the American Academy of Pediatrics, and the Center for Children and Youth with Special Health Care Needs at St. Christopher’s Hospital for Children in Philadelphia to study the disaster communication needs of these understudied populations with unique preparedness and communication challenges. This project will address the following questions:

  • How do families with children and youth with special health care needs and autism spectrum disorders prefer to receive information in emergencies and disasters? What are their preferred channels, formats, and information sources?
  • Do medical practices and social service organizations that serve these communities have the capacity for disaster communications? How do current electronic medical records and other technologies support urgent risk communication to at-risk patients or clients?
  • To what extent can social media be a useful channel to share information with at-risk communities during a public health emergency? 

We will conduct formative, mixed-methods research to learn how families with CYSHCN, including autism spectrum disorders, prefer to receive information during and after emergencies. We will do so through the use of:

  • Surveys of families and caregivers with CYSHCN and autism spectrum disorders
  • Surveys of health care and social service providers
  • Interviews and focus groups with families with CYSHCN and autism spectrum disorders
  • Interviews and focus groups with health care and other professionals, including medical practices and social service agencies
  • Interviews and focus groups with representatives from emergency response agencies including health departments, emergency management agencies and other public safety organizations
  • Focus group with experts in health information and communications technologies

The research findings will be translated into messages targeted for these audiences in preferred platforms and from preferred sources, and these messages will be evaluated by community stakeholders. We will also develop guidelines for risk communication directed towards families with CYSHCN, for use by government agencies as well as health and social service providers.