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Preparing Families of Children WithSpecial Health Care Needs for Disasters:An Education InterventionMark Daniel Baker MD a , Lisa Renee Baker PhD b & Lee Anne FlaggBS ca Children's of Alabama , Pediatric Emergency Medicine ,Birmingham , Alabama , USAb Department of Social Work , University of Alabama atBirmingham , Birmingham , Alabama , USAc Department of Sociology , University of Alabama at Birmingham ,Birmingham , Alabama , USAPublished online: 14 May 2012.

To cite this article: Mark Daniel Baker MD , Lisa Renee Baker PhD & Lee Anne Flagg BS (2012)Preparing Families of Children With Special Health Care Needs for Disasters: An EducationIntervention, Social Work in Health Care, 51:5, 417-429, DOI: 10.1080/00981389.2012.659837

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Social Work in Health Care, 51:417–429, 2012Copyright © Taylor & Francis Group, LLCISSN: 0098-1389 print/1541-034X onlineDOI: 10.1080/00981389.2012.659837

Preparing Families of Children With SpecialHealth Care Needs for Disasters: An Education

Intervention

MARK DANIEL BAKER, MDChildren’s of Alabama, Pediatric Emergency Medicine, Birmingham, Alabama, USA

LISA RENEE BAKER, PhDDepartment of Social Work, University of Alabama at Birmingham, Birmingham,

Alabama, USA

LEE ANNE FLAGG, BSDepartment of Sociology, University of Alabama at Birmingham, Birmingham,

Alabama, USA

Children with special health care needs pose a special challenge inpost-disaster response. Current research suggests that the generalpopulation is not adequately prepared for a major disaster event,with members of vulnerable populations even less prepared. Thepurpose of this study was to determine the short-term effectivenessof a brief patient education intervention aimed at increasing lev-els of disaster preparedness among families of special health careneeds children. One hundred twenty-one families were randomlyassigned to either intervention or intervention plus incentive group.Families were surveyed prior to the intervention using a previouslypublished instrument on family preparedness, and at 30–45 dayspost-intervention. A Preparedness Score was assigned to each fam-ily based on the number of items completed on the preparednessinstrument. Significant differences were found between pre- andposttest scores for families that received the intervention, regardlessof whether or not an incentive item was provided. Posttest scoreswere significantly higher than pretest scores, suggesting that theintervention was successful in increasing short-term overall levelsof family preparedness in this population.

Received August 29, 2011; accepted January 18, 2012.Address correspondence to Dr. Lisa Renee Baker, University of Alabama at Birmingham,

Department of Social Work, 1530 3rd Avenue South, HHB 327, Birmingham, AL 35294. E-mail:lrbaker@uab.edu

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KEYWORDS education, Pediatrics Social Work, prevention

The last decade has seen an increase in attention to the wide-sweepingeffects of natural and man-made disasters. Disasters occur where theresulting needs exceed the available resources, and include such eventsas tornados, hurricanes, earthquakes, and wildfires, or man-made events,such as bombings, arson, terrorism, nuclear, and chemical emergencies.Regardless of the origination, disasters result in loss of life, property, andlivelihood, creating hazardous conditions that exceed a family’s ability toendure and succeed in their day-to-day activities.

Since disasters vary widely in their origin and subsequent effects, thecurrent recommendations are to assume an “all hazards” approach to pre-paredness (FEMA and American Red Cross, 2004). All-hazards institutescomprehensive preparedness guidelines that consider man-made and nat-ural events. Family disaster plans and kits incorporate elements that wouldbenefit the family whether they were faced with a natural disaster such as aflood, or a pandemic event such as the flu. All hazards preparedness equipsfamilies to be self-sustaining for a period of 72 hours following an event,the time frame that is usually necessary for a family to be able to evacuatesafely, or shelter in place until support services are available.

Recent disasters have also revealed the complexities of response, espe-cially when response involves the needs of vulnerable populations such aschildren, the elderly, and those with special health care needs (Ginter et al.,2006; Redlener, 2008). Children in particular present unique challenges forfirst responders, health care facilities, and community shelters post-event, inpart because of their special developmental, physiological and behavioralattributes (Mulligan-Smith, 1998; Cicero & Baum, 2008; Dolan & Krug, 2006;Ginter et al., 2006). Degree of event exposure, parental response to theevent, the age of the child, the presence of any preexisting mental healthissues and parental separation can exacerbate known vulnerabilities.

Disaster response for children requires special knowledge, skills, equip-ment and attitudes that can often test responder capabilities to adequatelymeet the medical needs of pediatric patients in mass-casualty and evacuationscenarios (Stamell, Foltin, & Nadler, 2009). Children may be separated fromcaregivers who can provide information and critical support, confoundingalready stressful situations. Preexisting or special health care needs oftenresult in an increase in physiological and psychological symptoms, as wellas disruption in the continuity of medical care (Rath et al., 2007; Markenson,Reynolds, & Committee, 2006). Risks for physical, developmental and behav-ioral conditions are amplified and require a higher level of care than typicalchildren post-disaster (American College of Emergency Physicians, 2008;McPherson et al., 1998).

Recommendations outlining family and personal preparedness from theFederal Emergency Management Agency (FEMA), the American Academy

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Preparedness 419

of Pediatrics (AAP), and the American Red Cross (ARC) follow a three-step preparedness process that includes (1) Being informed about potentialhazards in the area, (2) Making a communication and evacuation plan,and (3) establishing strategy and a kit of supplies necessary to self-sustain for 3 days post-event. Preparedness efforts are also expandingwith health professional networks, responding organizations and commu-nity agencies and facilities, exposing gaps in the response frameworksand bringing to light the multitude of specialty areas such as adult carefacilities, hospitals, schools, and child welfare agencies that are address-ing challenges (Gnatt, 2011; Rebmann, English, & Carrico, 2007; Bond,Beckstrand, & Heise, 2009; Daugherty & Blome, 2009; Landry & Stockton,2008).

While the preparedness movement is evident on the macro level, lessemphasis has been placed on interventions to increase personal prepared-ness. Personal preparedness is a significant issue, not only for individualsafety but also as an element of community response, given that, communitymembers often act as first-responders to assist their home community, evenin the absence of formal training or outside support resources (Adams &Canclini, 2008; Wilson, Temple, Milliron, Packard, & Rudy, 2008). However,in spite of mass media campaigns the majority of citizens remain unprepared.Some estimates indicate that as few as 21–31% of citizens have completed thebasic steps to assume personal responsibility for themselves in the 72 hoursfollowing a disaster, even when citizens report risk awareness and suscepti-bility, or live in high probability regions (Blessman et al., 2007; Wilson et al.,2008; Redlener, Abramson, Stehling-Ariza, Grant, & Johnson, 2008; CitizenPreparedness Survey Database Report, 2007; National Center for DisasterPreparedness, 2007). In spite of high-risk circumstances, special popula-tions, including families that include adults and children with chronic andspecial health care needs, also exhibit low levels of preparedness (Gausche-Hill, 2009; Uscher-Pines, Hausman, DeMara, Heake, & Hagen, 2009, Baker& Baker, 2010; Stallwood, 2006; Renukuntla, Hassan, Wheat, & Heptulla,2009).

To date the primary method of delivery of education about personaldisaster preparedness has been mass media messaging, though overall lowpreparedness rates indicate little effectiveness in such methods. Perhapsas a result, recent studies are emerging that evaluate the effectiveness ofalternative methods of preparedness education, especially with high-riskpopulations (Adams & Canclini, 2008; Lujan & Acevedo, 2009; Eisenman,Glik, Maranon, Gonzalez, & Asch, 2009). These studies rely on providing thesame education elements utilizing socially informal contexts. Eisenman et al.(2009a) in particular evaluated the effectiveness of utilizing small group dis-cussion and social networks moderated by health promoters, in comparisonto culturally appropriate media-only delivery, to provide disaster prepared-ness education to a Latino community. Preparedness levels at follow-up

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420 M. D. Baker et al.

were greater in the group that received information through the healthpromoter/small group modality as opposed to the media-only group.

Presumption of risk is oftentimes assumed to be a predictor of prepared-ness, however research indicates that even in the presence of presumed risk,persons may fail to act on initiating preparedness behaviors even when theintention exists. Paton (2003) suggests that this failure may be in part tothe perceptions that the risk is too great, the resources necessary to accom-plish the tasks are not available, or there is a lack of trust in the sourceof the education information. This idea appears to have some validity whenviewed in the context of personal interventions that have demonstrated someeffectiveness, where the delivery included a social component involving atrusted community member (Adams & Canclini, 2008; Lujan & Acevedo,2009; Eisenman et al., 2009b; Woolford, Clark, Stretcher, & Resnicow, 2010).These studies provide insight in to components that supplement mass mes-saging and provide a basis for the development of an intervention methodthat incorporates a personal component within a high-risk population.

In the current study, the authors sought to empirically test a brief one-to-one patient education intervention to determine the short-term effectivenessof increasing levels of preparedness among this high-risk population withina single institution, utilizing a health care provider and researcher as a vehi-cle to deliver the information in a one-to-one format. The objective wasto determine whether or not a change in baseline levels of preparednessmay occur as a result of providing information in this manner. The authorshypothesize that scores on a measure of family preparedness will be higher30 days after receiving the intervention than scores obtained prior to theintervention. The intervention provides education on the steps that needto be taken to achieve an acceptable level of preparedness and captureswhether or not the participant has translated that education in to behaviorsto complete the steps. The aim is not to capture a change in knowledge,but to capture whether or not the knowledge may have led to a change inbehavior. While the content of the education is not novel, in that is has beenpresented in similar forms of mass media, the delivery method proposedprovides a novel approach that may be applicable in multiple settings.

METHODS

Sample

A convenience sample of caretakers (parents or legal guardians) of chil-dren being seen for a chronic medical conditions in either the specialtyclinics or the emergency department waiting room of an urban universityaffiliated children’s hospital were invited by a trained research assistant toparticipate in a study on family disaster preparedness. Of the 247 care-takers approached, nine declined, leaving a sample of 238 who agreed to

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participate. Participants completed informed consent prior to initiation of theintervention. This study was approved by the Institutional Review Board forthe protection of human subjects at the University of Alabama at Birminghamand Children’s Hospital of Alabama.

Procedure

The investigators utilized a quasi-experimental pretest/posttest design.Participants were randomly assigned by days of the week to either receivethe education intervention only, or to receive the intervention along withan incentive item, which consisted of a personal disaster kit including aflashlight, batteries, radio, and small first aid kit. After obtaining consent,participants were asked to complete a preparedness survey (pretest), afterwhich they received the education intervention and incentive or no incentiveitem. Participants that completed the survey and completed the interventionwere contacted a minimum of 30 days after their visit to the children’s hos-pital to complete the identical preparedness survey (posttest). Respondentswere contacted via a phone number that they had listed on the initial survey.If there was no answer, either a voicemail was left explaining the nature ofthe follow-up or an attempt to contact the participant was made at a latertime. Of the 238 participants that completed the pre-survey, 121 (51%) wereable to be contacted for follow-up. Of the 117 that were not able to becontacted, 29 (30%) had a disconnected phone number and 67 (70%) wereunable to be contacted after three attempts.

Intervention

The education intervention was provided by one of the authors (MDB, LAF)and included a 10–20-minute discussion on the effects of disasters and distri-bution of informational handouts from FEMA, ARC, and the Department ofHomeland Security (DHS) on disaster preparedness, as well as a FamilyEmergency Plan form from DHS and the Emergency Information Formfor Children with Special Needs from the AAP. The education followed aguided interview methodology, framed by the survey instrument, to dis-cuss the key concepts of preparedness (i.e., be informed about potentialdisasters, complete an emergency preparedness plan, and compile a dis-aster kit). Education was provided from a generalized perspective and didnot include specific information dependent on the particular need of thechild. For example, instructions were not different for parents of ventilatordependent children as opposed to those with chronic medication needs.

The intervention consisted of elements that the authors felt werecritical to empowering clients to engage in preparedness behaviors. Thefirst element included an in-depth review of the preparedness informationhandouts, as well as a detailed review of the necessary elements of a disaster

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kit. Participants were provided with a blank family emergency preparednessplan as well as hard copies of the education information to use as a refer-ence once the intervention was completed. The second element includeda discussion of potential barriers to completion of the preparedness tasks.For example, families were instructed how to work with their insuranceplan or medical provider to obtain extra supplies of medication for theirdisaster kit. Families with financial concerns were provided with problemsolving assistance in how to prioritize the elements of the kit, and com-plete those elements that did not incur personal costs, such as completingthe Family Emergency Plan. And finally, the last element included guidancefor initiating a conversation with the child’s medical care provider or subspecialty provider about preparedness as well as completing and updatingthe Emergency Information Form for Children with Special Needs. Parentswere encouraged to consider the needs of their individual situations whendeveloping their care plan with their physician.

While the follow-up contact primarily served to collect data on whetheror not tasks had been completed, or whether the desired behaviors hadoccurred, it also served as an opportunity to provide further education ifnecessary. Follow-up calls were conducted by one of the study authors whoare all trained in preparedness education.

Measures

Caregivers were asked to complete a pre-intervention survey adapted fromthe At-Home Emergency Preparedness Survey (Blessman et al., 2007), assess-ing levels of family disaster preparedness, prior to receiving the intervention.The survey was modified from the original 21 to 16 items (Figure 1). Fifteenitems relating directly to preparedness activities such as “Does your familyhave a written communication plan?,” “Do you have a packaged first aidkit?,” and “Do you have 3 days of stored water?” were retained. Five items(items #11, 12, 15, 16, 17 and 18 on the original survey) were removed toeliminate redundancy. One item was added to reflect a recommended taskfor families of children with special health care needs; “I have a copy of mychild’s Medical Emergency Plan completed by his/her doctor.” Participantswere assigned a preparedness score based on the number of preparednessitems indicated as completed on the survey with a possible range of 0–15(item 16 was not included in the preparedness score because it elicited detailon a previous item).

Data Analysis

Data was analyzed utilizing SPSS version 16.0 (IBM Corporation, Somers,NY). Frequencies and descriptive statistics were computed to definepopulation characteristics. Chi-square and t-tests were computed to

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1. Does your family have a written Family Emergency Communication Plan in case you are separated during a disaster?

2. Does your family have a designated meeting place outside of your home? 3. Does your family have a designated meeting place outside of your neighborhood? 4. Does your family have an emergency supply kit that can last you for 3 days? 5. Does your family have a fire escape plan for your home? 6. Does your family keep emergency supplies in each of your vehicles? (e.g.

blankets, flashlights?) 7. Does your family have 3 gallons of water stored for each person in the household

(3 day supply)? 8. Does your family have enough stored food that does not need refrigeration or

preparation that can sustain your family for 3 days? (if “yes” go to question 9) 9. Is the food separated from your regular food supply? 10. Do you have a working flashlight with an extra set of batteries in your home? 11. Do you have a packaged first aid kit in your home? 12. Do you have a container that is both fireproof and waterproof for storing

important papers in your home? 13. All family members over 14 years old know how to turn off the gas, power, and

water to our household in case of an emergency. 14. I have a copy of my child’s Medical Emergency Plan (Emergency Information

Form) completed by his / her doctor. 15. All children over 5 years old in our house are able to state their full name,

address, and phone number. 16. How many extra days of medication do you have on hand at all times for each

family member with a chronic medical condition?

FIGURE 1 Family preparedness survey.

determine differences between groups among those participants that com-pleted the pretest only as opposed to those participants completing bothpre- and posttest surveys. Similar statistics were calculated for groups thatreceived the intervention only versus those that received the interventionplus incentive item. Tests of significance were computed to assess differ-ences in preparedness scores pretest and posttest for the combined sampleas well as comparison between intervention versus intervention plus incen-tive groups. Anecdotal descriptive data was calculated on the pretest onlygroup to explore baseline levels of preparedness as well as reasons for lackof preparedness.

RESULTS

Participant Characteristics

Of the 121 caregivers who completed pre and post measures of the studythe majority were female (106) with an average age of 34.6 years. Eight-one (69%) of the participants reported being head of household with themajority living in a house (75%) as opposed to an apartment (22%) or otherdwelling (3%). There was an average of 4.13 persons living in the household.Families identified their child’s special health care need as either requiringdaily medication (30%), use of a home ventilator or nebulizer (14%), useof a wheelchair (2%) or having multiple needs (54%). Racial demographicswere not collected.

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Population characteristics were explored to determine whether or notthere were significant differences between groups that completed only thepretest survey, or both pre and post surveys, that might influence the results.There were no significant age differences between the participants whocompleted the pretest only (n = 231) as compared to those completingfollow-up t (230) = .201, p = .841. There were also no significant differ-ences by gender, X2(1, n = 238) = .010, p = .922, head of household X2(1,n = 234) = .259, p = .611, or child’s medical need, X2 (3, n = 233) = 2.655,p = .448.

Participant Levels of Preparedness

Two-hundred and thirty-eight caregivers completed pretest surveys assess-ing levels of disaster preparedness. Caregivers were asked to rate 15 itemsreflecting specific preparedness activities as to whether or not the task wascompleted. If the task was not completed participants were asked to select areason why (Table 1). Of the 238, less than one-third of respondent reportedhaving a written family emergency communication plan (12.2%) or a des-ignated meeting place outside of the neighborhood if separated (24.4%).Other items included having an emergency supply kit (24.4%), 3-day supplyof water (18.5%), and a copy of the child’s Emergency Medical Plan (27.3%).The mean pretest preparedness score for the whole sample (N = 238) wasM = 6.54, SD 3.15 out of a possible 15. These results were not dissimilar topreviously cited preparedness rates in the general population.

Intervention Effectiveness

This study was designed to evaluate whether or not an education interven-tion delivered via a one-to-one intervention methodology would be effectivein influencing baseline levels of preparedness among families of childrenwith special health care needs. The authors hypothesized that if the inter-vention was effective that posttest scores on the preparedness survey wouldbe higher 30 days post-intervention than scores on survey administered priorto the intervention. Scores on the survey reflect whether or not the par-ticipant has completed the behaviors necessary to achieve completion ofpreparedness tasks.

One-hundred and twenty-one caregivers participated in both the pretestsurvey and the posttest survey. Posttest preparedness scores were higher(M = 9.37, SD = 3.29) than pretest scores (M = 6.41, SD = 3.06), reachingstatistical significance (t (120) = –10.057, p = .000).

There was no significant differences in pretest preparedness scores forthe total group (N = 238) between the group that received the incentive item(n = 144) and the group that received the educational intervention alone(n = 94), t(236) = –1.390, p = .166. Participants who received an incentive

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425

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item (n = 71) scored higher posttest than those who received the educa-tion intervention only (n = 50). Significant differences were found betweenpretest preparedness scores (M = 6.42, SD = 2.81) and posttest prepared-ness scores in the educational intervention plus incentive group (M = 10.10,SD = 2.66), t(70) = –11.262, p = .000). However, significant differences werealso found between pretest scores (M = 6.40, SD = 3.40) and posttest scores(M = 8.34, SD = 3.810) for those participants that received the educationonly intervention, t(49) = –3.799, p = .000. A significant difference was foundregardless of whether or not the participants received the incentive item.

DISCUSSION

Personal and family preparedness for disasters remains low among familieswith special health care needs in spite of widespread public awareness ofthe deleterious effects of disasters. Families with special health care needswere shown to be no more prepared than the general population in tworecent studies despite reported awareness of the risks posed by disasters(Uscher-Pines et al., 2009; Baker & Baker, 2010). The effectiveness of publichealth media campaigns aiming to improve at-home preparedness has notbeen rigorously evaluated, leaving professionals to question effectivenessand look for alternative interventions. This study demonstrates the utility ofa brief one-to-one intervention in enhancing at-home disaster preparednessamong a group considered to be at high-risk for harm during natural dis-asters. Building on current education information, the researchers deliveredcurrent information in a novel manner that mobilized use of an informalsocial context.

Delivery of education in a one-to-one format proved effective inincreasing the level of preparedness among families when compared tobaseline levels measured prior to the intervention. This change held trueamong participants who received an incentive item as well as among thosewho received the educational intervention alone. Since the incentive itemincluded elements to assist in completion of at-home preparedness tasks(i.e., obtaining a flashlight and emergency kit), some of the improvementnoted in posttest preparedness scores between the incentive item groupand the education only intervention group may be explained. However,even with that consideration it is important to note that the measures werenot measuring a change in knowledge level, but captured a change in theinitiation of behaviors necessary to complete preparedness tasks.

In spite of the promising outcomes, this study is not without significantlimitations. Even though there are general population estimates on prepared-ness levels, the inclusion of a control or comparison group may have limitedthreats to internal validity. In addition, although there did not appear to bestatistically significant differences between the participants that completed

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Preparedness 427

the pretest only as opposed to those that completed both pre- and posttest,a higher percentage of follow-up would have been desirable.

The field of personal preparedness as a specialized research area isrelatively contemporary. As such, hindsight is often the best indicator ofways to direct future research. The recent events in the study region (i.e.,the April 27, 2011 Alabama tornado outbreak) have increased attention tothe effects of preparedness, and have left the authors with questions abouthow the study participants fared in light of the widespread devastation.The present study did not include a long-term follow-up component, whichwould have been advantageous to evaluate whether or not preparednesstasks in fact translated to better outcomes at the point of event. Long termfollow-up is a variable that is being included in future studies.

Social workers, pediatricians, and other health care providers may be ina unique position to encourage at-home disaster preparedness as they areseen as a trusted source for information on topics such as child developmentand safety. This study suggests that providing education information in apersonal, one-to-one intervention may result in higher preparedness levelsthan current mass media messaging. Future research in the area is neededto determine if the gains in at-home disaster preparedness can be sustainedand whether the education translates to changes in behavior at the pointof an event. However this relatively simple intervention may prove usefulto health care professionals in their efforts to prepare high-risk patients fordisasters.

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