Mixed-Methods Pilot Study: Disaster Preparedness of Families With Children Followed in an Intestinal Rehabilitation Clinic

Abstract

Background: Children with special healthcare needs are a vulnerable population in disasters. Special-needs families tend to be less prepared for a disaster than the general public. The purpose of this pilot project was to examine the disaster preparedness levels of families in an intestinal rehabilitation (IR) clinic.

Materials and methods: We administered an anonymous survey to a convenience sample of IR clinic families and conducted 2 focus groups. Descriptive analyses were used for survey data; Atlas.ti was used to analyze focus group data.

Results: Survey findings revealed that 69% of families lacked an emergency supply kit, and 93% did not have a clinician-completed emergency information form. On a scale of 1-10, the mean confidence in their family's disaster preparations was 4.9. The overarching theme from focus group discussions was challenges and/or barriers to disaster preparedness.

Conclusion: IR clinic families are generally unprepared for a disaster. These findings are highly relevant to our goal of developing a disaster survival toolkit for the IR families. Toolkits are being distributed in the IR clinic.

Keywords: children with special healthcare needs; disaster medicine; disaster planning; disaster preparedness; intestinal failure; intestinal rehabilitation; pediatrics; total parenteral nutrition.