title: 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.
  
  
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Division of Pediatric Surgery, Children's Hospital Los Angeles, Los Angeles, California cgoodhue@chla.usc.edu.
authors.forename: Catherine J
authors.initials: CJ
authors.lastname: Goodhue
authors.affiliation: Division of Pediatric Surgery, Children's Hospital Los Angeles, Los Angeles, California.
authors.forename: Natalie E
authors.initials: NE
authors.lastname: Demeter
authors.affiliation: Division of Pediatric Surgery, Children's Hospital Los Angeles, Los Angeles, California Keck School of Medicine, University of Southern California, California.
authors.forename: Rita V
authors.initials: RV
authors.lastname: Burke
authors.affiliation: Division of Gastroenterology, Hepatology and Nutrition, Children's Hospital Los Angeles, Los Angeles, California.
authors.forename: Khadija T
authors.initials: KT
authors.lastname: Toor
authors.affiliation: Division of Pediatric Surgery, Children's Hospital Los Angeles, Los Angeles, California Keck School of Medicine, University of Southern California, California.
authors.forename: Jeffrey S
authors.initials: JS
authors.lastname: Upperman
authors.affiliation: Keck School of Medicine, University of Southern California, California Division of Gastroenterology, Hepatology and Nutrition, Children's Hospital Los Angeles, Los Angeles, California.
authors.forename: Russell J
authors.initials: RJ
authors.lastname: Merritt
mesh_terms: D000328:Adult; D002648:Child; D002675:Child, Preschool; D004189:Disaster Planning; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006779:Hospitals, Public; D006801:Humans; D007223:Infant; D007410:Intestinal Diseases / Q000534:rehabilitation*; D008297:Male; D008875:Middle Aged; D010288:Parenteral Nutrition; D010865:Pilot Projects; D011795:Surveys and Questionnaires; D035862:Vulnerable Populations
keywords: children with special healthcare needs; disaster medicine; disaster planning; disaster preparedness; intestinal failure; intestinal rehabilitation; pediatrics; total parenteral nutrition