Improving Disaster Preparedness of Families With a Parenteral Nutrition-dependent Child.

OBJECTIVES: Disruption in the care of special healthcare needs children may lead to life-threatening situations or preventable secondary conditions. California averages more than 100 earthquakes per week. Subsequent power outages, damage to utility systems, and road damage after an earthquake can have grave consequences for families with parenteral nutrition (PN)-dependent children. The purpose of the study was to demonstrate that we could improve disaster preparedness of families with PN-dependent children utilizing individualized family education and distribution of personalized disaster survival toolkits. METHODS: We administered a baseline survey to assess disaster preparedness of our families with PN-dependent children followed by individualized disaster survival toolkit distribution and education. We followed up with these families with phone call surveys at 2 and 4 months. A generalized estimating equation with both logistic and linear regression was used to analyze data over the follow-up period. RESULTS: We found statistically significant improvements in developing a family emergency plan (P < 0.0001), having a basic emergency supply kit (P < 0.0001), having a completed emergency information form from the child's provider (P < 0.0001), and the confidence level or readiness for a disaster (P < 0.0001). All participants had extra batteries for PN infusion pumps. Having alternative power sources, such as a generator, did not significantly change over time. CONCLUSIONS: Individualized disaster education helped families with PN-dependent children not only to prepare for a possible earthquake, but also to feel more confident in their ability to handle a natural disaster.

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

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.