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Original Articles: Nutrition

Improving Disaster Preparedness of Families With a Parenteral Nutrition–dependent Child

Toor, Khadija T.; Burke, Rita V.; Demeter, Natalie E.; Upperman, Jeffrey S.§; Merritt, Russell J.||; Wee, Choo Phei; Goodhue, Catherine J.

Author Information
Journal of Pediatric Gastroenterology and Nutrition: August 2018 - Volume 67 - Issue 2 - p 237-241
doi: 10.1097/MPG.0000000000002048


What Is Known

  • Children with special health care needs are at high risk for hospitalization and adverse outcomes after a disaster.
  • Disaster preparedness is low in families with children with special health care needs.

What Is New

  • Families of home parenteral nutrition patients are responsive to disaster preparedness education and receipt of a disaster preparedness toolkit
  • Disaster preparedness training of home parenteral nutrition patients increased family's confidence of their readiness to cope with a disaster.

Approximately 14.6 million children in the United States ages 0 to 17 years have special healthcare needs (1). Children with special healthcare needs (CSHCNs) are “those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally” (2). Examples of CSHCNs include children with learning disabilities, developmental delays, hearing disorders, autism, diabetes, asthma, cerebral palsy, or paralysis due to varying levels of brain injury and so forth.

Children with special healthcare needs are a vulnerable population. Some are dependent on technology to sustain their lives, whereas others require specialized care by trained caregivers at home and at school. Any disruption in care, such as separation from a caregiver, power outage, or a shortage of supplies, may pose grave consequences for them. Children with special healthcare needs are at an increased risk of adverse outcomes after a disaster (3), but surprisingly, remain less prepared for a natural disaster compared with the general population (4,5). Patients with mental health and chronic medical problems are less likely to be prepared for natural disasters, and as a consequence, suffer disproportionately from disasters (6,7). Condition-specific disaster plans and preparation may limit the negative health outcomes of children with special healthcare needs (3).

In the United States, approximately 16,000 children are on home parenteral nutrition (PN) (8). PN-dependent children are classified as CSHCNs; they are dependent on the PN for hydration and nutrition. Timely PN delivery, electrically powered infusion pumps, and refrigeration of PN are essential for their survival. There are no nationally accepted specific disaster preparedness guidelines available for families with PN-dependent children. At our facility, we care for many families with a child requiring home PN.

The state of California averages more than 6000 earthquakes per year (9); fortunately, only 2 to 3 earthquakes every year are of a magnitude of 5.5 or greater that lead to moderate damage to structures (10). With the relatively higher risk of earthquakes in California, there is a higher likelihood of power outages and road damage. Lack of transportation secondary to road damage can cause delays in PN delivery. PN-dependent children may not be able to reach a hospital after a disaster. The available PN may become useless due to lack of refrigeration after an earthquake.

We hypothesized that providing individualized disaster plans and a disaster survival toolkit would improve not only disaster preparedness but also improve the confidence level of families with a PN-dependent child. This study was designed to improve the confidence levels of families with PN-dependent children to handle a natural disaster by providing one-on-one education with a healthcare provider and a disaster survival toolkit.


Study Population and Recruitment

After receiving institutional review board approval, parents of 31 PN-dependent children (median of 36 months on PN) were approached during routine intestinal rehabilitation (IR) clinic visits over a 6-month enrollment period. Our initially home total parenteral nutrition (TPN), and now IR, clinic has been in existence since 1978, and is staffed by a medical director, nurse practitioner, nurse manager, registered dietitian, social worker, and occupational therapist. All families approached in the IR clinic agreed to participate and written informed consent was obtained after study procedures were explained.

Baseline Survey

We conducted a baseline survey of 6 questions during an IR clinic visit. This survey was derived from a 21-item Disaster Survey (11), adapted with permission from an at-home survey (12). A Spanish interpreter was used for monolingual Spanish-speaking families. The questions in the survey were the following:

  • Have you developed your family emergency plan?
  • Do you have a basic emergency supply kit?
  • Do you have a plan/supplies for an alternative power source for your child's infusion pump, that is, extra batteries?
  • Do you have a plan/supplies for an alternative power source for your child's infusion pump, that is, a generator?
  • Do you have a completed emergency information form (EIF) from your child's provider?
  • On a scale of 1 to 10 with 10 being the best, how confident are you that you are ready for a disaster?

Disaster Survival Toolkit

After the baseline survey, families were provided with a personalized disaster survival toolkit and individualized disaster preparedness information. Documents were translated into Spanish, as appropriate for our families. Documents were provided in paper format and on a waterproof flash drive. Tool kit items included the following:

  • (1) Four D cell batteries—for use in TPN pumps
  • (2) 150-W power inverter—for charging laptops and phones in a car
  • (3) Waterproof flash drive/Universal Serial Bus (USB) preloaded with the following documents
  • Pertinent medical information (telephone numbers for providers, diagnosis, brief history, latest admission, allergies, central line information, medications, nutrition including TPN)
  • Examples of supply lists with expiration dates
  • EIF
  • Power and water discount forms
  • Hand-outs from Federal Emergency Management Agency and American Red Cross pertaining to earthquakes
  • A plan for emergency department (ED) visits including necessary laboratories and recommended antibiotics dosages.

Two- and Four-month Follow-up Surveys

We then conducted scripted follow-up surveys over the telephone at 2- and 4-month intervals, using the same 5 questions asked in the baseline survey. Unique identifiers were used to match baseline, 2- and 4-month follow-up surveys. The follow-up phone call was a reminder to complete the disaster preparation tasks suggested, and it also gave us a chance to assist the families to overcome barriers.

Statistical Analysis

Generalized estimating equations with logistic regression were used to examine the difference in the 5 dichotomous primary endpoints (listed in Table 1) over the follow-up period with repeated measures adjustment. Generalized estimating equation with linear regression was used to examine changes in confidence level over follow-up. Categorical variables were summarized in frequency and percentage for each time point. Mean and standard deviation were summarized at each time point for continuous variables. Statistical significance was set at P < 0.05 (2 sided). Stata/IC13.1 (StataCorp, College Station, TX) was used for our analyses.

Frequencies and percentages across baseline and follow-up time points



Fifty-two families with PN-dependent children were followed in our IR clinic at the time of initiation of our study. Thirty-one families gave their written informed consent to participate in our study. All were long-term PN patients with diagnoses including short bowel syndrome (secondary to necrotizing enterocolitis, gastroschisis, volvulus, and atresias), congenital enteropathy, or chronic intestinal pseudo-obstruction, including patients with mitochondrial dysfunction. (see Supplemental Table, Supplemental Digital Content, for a list of diagnoses and duration of PN usage.) Ages of the children ranged from 5 months to 19 years. Thirteen (42%) were girls and 18 (58%) were boys. Sixteen percent of families were monolingual Spanish speaking.

Baseline Survey

At baseline, 64% of families did not have a family emergency plan and 42% of families lacked a basic emergency supply kit (Table 1). Ninety percent (90%) of families lacked a completed EIF from their clinician. All families had extra batteries for PN infusion pumps. Only 19% of families had back-up generators. The mean confidence level was 5 on a 10-point scale in which 10 was the highest confidence level (Fig. 1).

Disaster readiness confidence level.

Two-month Follow-up

At the 2-month survey, 68% of families had a family emergency plan and 77% had a basic emergency supply kit. Twenty-six percent (26%) of families had back-up generators. Fifty-two percent (52%) of families had a completed EIF. The mean confidence level was 7.

Four-month Follow-up

At the 4-month survey, 90% of families reported having a family emergency plan and 93% had a basic emergency supply kit. Thirty-two percent (32%) of families had back-up generators. Ninety percent (90%) of families had a completed EIF. The mean confidence level was 8.

Statistical Assessment of Changes in Disaster Preparedness and Confidence

We found statistically significant differences in family emergency plan (P < 0.0001), basic emergency supply kit (P < 0.0001), having a completed EIF from the child's provider (P < 0.0001), and confidence level or readiness for a disaster across baseline, 2- and 4-month follow-up (P < 0.0001). Having a plan or supplies for an alternative power source for a child's infusion pump did not show significant improvement over time. Only a few families purchased generators (P = 0.075). A whisker plot (Fig. 1) shows the gradual improvement over time in parental confidence level or readiness for a disaster over the follow-up period.


Our initial intake data found that most of our IR families were not prepared for a natural disaster. This is consistent with data previously reported for children with special health care needs (4,5,13). Yet 13.9% of children have experienced a disaster, 4.1% in the past year (14). Despite the imminent risk of earthquakes in Southern California, only 17% of Los Angeles households had an emergency plan and 28% had emergency supplies (15).

In the event of a disaster, more than half (51%) of Americans believe that help will arrive in under an hour (13). The communication systems and transportation facilities may become disrupted or overwhelmed in the aftermath of a disaster (16). Thus we felt the need to prepare our families with PN-dependent children for a possible high-magnitude earthquake. The best time to develop disaster preparedness plans is during periods of normalcy (17). Most families with CSHCNs realize the importance of disaster preparedness and want to prepare for a disaster, but do not know how or find the task hard to complete (4,5).

Education was previously found to be effective in improving disaster preparedness (4,18). A brief patient education intervention using a pretest and posttest model was noted to improve short-term overall levels of disaster preparedness (18). A more effective sociocognitive model includes motivating and assisting the caretaker to prepare for a disaster (19). Parents of children with developmental disabilities considered targeted training as important in disaster preparedness (5). We adapted our model based on this background.

Publications of experiences from Hurricane Katrina (20,21) and the earthquake/tsunami in Japan (22) identified several issues for children in general and for CSHCNs. These included portability/lack of medical records and communication with a “medical home”; lack of electrical power/alternate power sources; separation of children from their caregiver(s); and general household preparedness. We specifically focused on these issues.

Special healthcare needs children have extensive medical records that may not be accessible in emergency situations; children may not present to their “home” institution. This barrier can be overcome by providing the family with a completed EIF and pertinent medical summary stored on a portable, waterproof USB/thumb drive (3,23). Our families were provided with a waterproof USB with pertinent medical information, an ED plan, and a blank copy of the EIF to be completed by their clinician; they were asked to attach the USB to their car keys or house keys so it can be readily available. The pertinent medical information and ED plan were also provided in paper format in a zip-lock bag, as some healthcare facilities do not allow “outside” USBs to be opened on facility computers.

There can be language and literacy concerns. The Latino population comprises 38.8% of Los Angeles County residents (24). The lower-income Latino populations of Los Angeles had lower rates of disaster preparedness (42.7%) compared to non-Latino whites (56.6%), which may be due to nonavailability of culturally and linguistically appropriate disaster-related information (6). Our disaster survival toolkit included information in Spanish, when needed.

This special needs population has additional considerations including technology dependence. Following the 2011 earthquake in Japan, 75% of hospital admissions were technology-dependent children admitted with medical device failure due to electricity outage. Access to alternative sources of electricity and communication may reduce the likelihood of hospitals becoming overburdened after a natural disaster (22). The American Academy of Pediatrics endorses that all critical life support devices of technology-dependent children should have a secondary means of back-up power (23). A power inverter that attaches to a car battery was given to each of our families, so that in case of a power outage, computers and phones can be recharged to maintain communication with their medical home. Families were encouraged to purchase an alternative power source such as a generator. Most of our families did not do so. We assume that the major barrier was the approximately 1000 dollar cost, not including running expenses, but we did not specifically query parents as to why a generator was not purchased.

PN is essential for PN-dependent patients. It is delivered weekly and is kept refrigerated at home. Refrigerated PN can last from 7 to 9 days from the date of manufacture. PN becomes unusable once it's taken out of refrigeration and left at room temperature for >24 hours. We needed to provide an alternative intravenous solution for use during the disaster period. Ten percent dextrose solution (D10) is an alternative solution that provides hydration and glucose that can be kept at room temperature and be safely used short term in emergency situations. Prescriptions were given to families to obtain D10 solution from their pharmacy.

A 3-day stay-at-home plan is recommended by emergency response agencies including the Department of Homeland Security, American Red Cross, American Academy of Pediatrics, and the Federal Emergency Management Agency (4,25). Three days will generally provide ample time to safely transport the child to the hospital or for PN to be delivered.

Only prepared families can keep their stable PN-dependent children at home for 3 days. Families were encouraged to organize the supplies according to expiration dates. Examples of supply lists were provided to encourage parents to make personalized supply lists of all the essential supplies needed for 3 days for their PN-dependent child. We provided letters for the insurance company so families could stockpile necessary emergency supplies.

Taking care of a PN-dependent child can put a financial strain on families. Physician-signed discount forms for electricity/water were provided to the families and submitted by the families to their respective provider companies. Power company discount forms provide information to identify the house where a PN-dependent child lives in the hope that during restoration of the power grid, priority can be given to a house with a PN-dependent child.

Two thousand five hundred (2500) children were separated from caregivers during Hurricane Katrina (20,21). Parents cannot be solely responsible for children and be the only source of medical history, highlighting the importance of family involvement and medical information sharing as part of disaster preparedness. Parents were advised to identify relatives (grandparents, uncles, aunts) who will agree to be involved in the child's care in case a parent is unavailable. Parents were asked to provide these relatives with a copy of the USB with the child's pertinent medical information.

Lastly, in a household with a PN-dependent child, the focus lies on meeting the needs of that child. A caretaker who is dehydrated, hungry, and/or injured may not be able to provide care, even if all the supplies for the special needs child are available. We encouraged our families to build an emergency kit for themselves, as their well-being would directly influence their ability to aid their PN-dependent child.

Our study describes the experience of a single institution with data collected from 31 families regarding their level of disaster preparedness and confidence to handle a disaster situation. Given our small sample size, we cannot speculate why some of our families did not prepare for a disaster. Also, as our geographic hazard risk differs from other areas of the country, there are limits to the generalizability of our findings. The same approach to preparedness can, however, still be applied.

In general, our families with a PN-dependent child did not feel prepared for a disaster. After a brief one-on-one educational intervention and 2 telephone reminder calls, the majority of our PN-dependent families developed an emergency plan, and their preparation improved their confidence to handle a disaster situation. Improvement over time was statistically significant. Education, motivation, family involvement, and close follow-up to discuss barriers can empower families to be prepared to handle a natural disaster.

We understand that there are serious challenges to maintaining such readiness. Families develop their disaster plans and arrange emergency supplies such as extra intravenous fluids. They, however, have to remain vigilant to replace outdated emergency supplies and carry updated medical information (ie, on a USB). Our long-term goal is to standardize the disaster survival toolkits and establish nationally accepted preparedness guidelines for PN-dependent children.


1. Child and Adolescent Health Measurement Initiative. Who are Children with Special Health Care Needs (CSHCN). 2013. Accessed May 18, 2017.
2. McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics 1998; 102 (1 pt 1):137–140.
3. Rath B, Donato J, Duggan A, et al. Adverse health outcomes after Hurricane Katrina among children and adolescents with chronic conditions. J Health Care Poor Underserved 2007; 18:405–417.
4. Baker LR, Baker MD. Disaster preparedness among families of children with special health care needs. Disaster Med Public Health Prep 2010; 4:240–245.
5. Wolf-Fordham S, Curtin C, Maslin M, et al. Emergency preparedness of families of children with developmental disabilities: what public health and safety emergency planners need to know. J Emerg Manag 2015; 13:7–18.
6. Eisenman DP, Zhou Q, Ong M, et al. Variations in disaster preparedness by mental health, perceived general health, and disability status. Disaster Med Public Health Prep 2009; 3:33–41.
7. Ko JY, Strine TW, Allweiss P. Chronic conditions and household preparedness for public health emergencies: Behavioral Risk Factor Surveillance System, 2006–2010. Prehosp Disaster Med 2014; 29:13–20.
8. Squires RH Jr, Iyer KR. Corkins MR, Balint J, Bobo E, et al. Intestinal failure. ASPEN Pediatric Nutrition Support Core Curriculum American Society for Parenteral and Enteral Nutrition, 2nd ed.Silver Springs, MD: 2015.
9. Earthquake Track. Recent Earthquakes Near LA and Southern California. Accessed July 24, 2017.
10. Shake Map. Archive of ShakeMaps From 2016. Accessed July 24, 2017.
11. Goodhue CJ, Demeter NE, Burke RV, et al. Mixed-methods pilot study: disaster preparedness of families with children followed in an intestinal rehabilitation clinic. Nutr Clin Pract V 31 2016; 257–265.
12. Baker LR, Cormier LA. Disaster preparedness and families of children with special needs: a geographic comparison. J Community Health 2013; 38:106–112.
13. Petkova ES, Sury J, Chandler T, et al. Children in Disasters: Do Americans Feel Prepared? A National Survey. New York, NY: National Center for Disaster Preparedness at Columbia University's Earth Institute; May 15, 2016.
14. Becker-Blease KA, Turner HA, Finkelhor D. Disasters, victimization, and children's mental health. Child Dev 2010; 81:1040–1052.
15. Eisenman DP, Wold C, Fielding J, et al. Differences in individual-level terrorism preparedness in Los Angeles County. Am J Prev Med 2006; 30:1–6.
16. National Library Service for the Blind and Physically Handicapped. Emergency Preparedness. Accessed July 24, 2017.
17. Benjamin E, Bassily-Marcus AM, Babu E, et al. Principles and practice of disaster relief: lessons from Haiti. Mt Sinai J Med 2011; 78:306–318.
18. Baker MD, Baker LR, Flagg LA. Preparing families of children with special health care needs for disasters: an education intervention. Soc Work Health Care 2012; 51:417–429.
19. Paton D. Disaster preparedness: a social-cognitive perspective. Disaster Prev Manag 2003; 12:210–216.
20. Murray JS. Disaster preparedness for children with special healthcare needs and disabilities. J Spec Pediatr Nurs 2011; 16:226–232.
21. Murray JS. Disaster care: public health emergencies and children. Am J Nurs 2009; 109:28–31.
22. Nakayama T, Tanaka S, Uematsu M, et al. Effect of a blackout in pediatric patients with home medical devices during the 2011 eastern Japan earthquake. Brain Dev 2014; 36:143–147.
23. American Academy of Pediatrics, Committee on Pediatric Emergency, Medicine Council on Clinical Information Technology, American College of Emergency Physicians, Pediatric Emergency Medicine Committee. Policy statement—emergency information forms and emergency preparedness for children with special health care needs. Pediatrics 2010; 125:829–837.
24. United States Census Bureau. Quick Facts.,losangelescountycalifornia/PST045216#viewtop. Accessed July 24, 2017.
25. Federal Emergency Management Agency. Build a Kit. 2014. Accessed July 24, 2015.

children with special healthcare needs; disaster survival toolkit; home parenteral nutrition

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