Recently the American Academy of Pediatrics (AAP), through funding from the Centers for Disease Control engaged Family Voices in a partnership to learn more about ways families and pediatricians can work together to improve the preparedness of families for emergencies/disasters. Family Voices helped the AAP to develop surveys and focus group questions for families, family leaders, and
providers on this critical topic. The goal was to develop handouts for families and pediatricians that would improve preparedness efforts. Hearing from over 40 families, we learned the following:
Many families are unprepared for disasters/emergencies due to lack of information. They are not aware of the need to prepare or the steps they should take. Others reported that lack of time is a barrier. Families caring for CYSHCN often are attending to the immediate health issues of their child and feel overwhelmed. Preparing for a disaster is “for some families beyond what they can handle.” Another barrier is lack of resources-for example, paying for additional medication and/or equipment
needed to be prepared. “Food is expensive and hard to store for those with special diets and allergies.”
Families agreed that it is very important, though, to talk with others about preparing for disasters/emergencies. Most felt that other family members, family organizations, and their child’s pediatrician or nurse would be helpful. When asked about ways pediatricians can help families to prepare for emergencies/disasters, families provided the following suggestions:
• Providing more time during well-child visits
• Encouraging pediatricians to raise this issue
• Hosting forums to bring families together to learn about EP and other issues
• Developing checklists
• Building a section on EP in a child’s medical record to track discussions
• Including EP in a Care Management Plan
AAP handouts for families and physicians on EP have been adapted to address the family input received and should be finalized soon. The perspectives and experiences provided by families will improve the usability of these materials. Kudos to AAP and CDC for encouraging pediatricians to raise the issue of preparedness with families and for partnering with Family Voices to include the all-important perspective of families themselves in this project.
