Effects of a self-management educational program for the control of childhood asthma

Patient Education and Counseling 36 (1999) 47–55

Effects of a self-management educational program for the controlof childhood asthma

a , a b*´ ´ ´Marıa Gabriela Perez , Lya Feldman , Fernan Caballeroa ´ ´ ´Universidad Simon Bolıvar, Departamento de Ciencia y Tecnologıa del Comportamiento, Apartado Postal 89.000, Baruta 1090,

Caracas, Venezuelab ´Centro Medico Docente La Trinidad, Caracas, Venezuela

Received 6 February 1997; received in revised form 28 April 1998; accepted 28 April 1998

Abstract

The objective of the present study was to evaluate the effects of a self-management educational program on 29 childrenbetween 6 and 14 years old and their parents implemented in an office setting in Venezuela. Children were randomlyassigned to experimental and control group. Children’s asthma knowledge, self-management abilities, index morbidity,parents’ asthma knowledge and management abilities were measured. The program consisted of six sessions of informationgiving and cognitive-behavioral strategies for the children, and two talks and an informative brochure for the parents. Resultsof t tests indicate that the experimental group experienced a statistical significant effects on children’s asthma knowledge(P , 0.001) and practice of self-management abilities (P , 0.000) and in parents’ knowledge (P , 0.008) compared to thecontrol group. The educational Self-management program had a significant impact on the Morbidity Index of the study groupat post-test (P , 0.05). Younger children benefited more from the program compared to older ones (P , 0.09). Children’s ageis highlighted as a critical variable in designing asthma educational programs. Results suggest the effectiveness on theseprograms independently of the cultural context. 1999 Elsevier Science Ireland Ltd.

Keywords: Children; Asthma; Self-management

1. Introduction mental control, education and self-management train-ing of the child and the family [2,3].

Bronchial asthma is the most frequent chronic It has been demonstrated in various studies under-respiratory disease in children. It is a multi-factorial taken in different countries that self-managementdisease influenced by biological, environmental, programs for asthmatic children reduce the numberpsychological and social factors [1]. An effective of hospitalizations, emergencies and crises [2–12].control and prevention of the disease requires a These programs can also increase knowledge aboutcombination of adequate medical treatment, environ- the disease, self-management abilities and improve

quality of life and school attendance. [2–12]. How-*Corresponding author. E-mail: [email protected] ever, in spite of these results, a review of the

0738-3991/99/$ – see front matter 1999 Elsevier Science Ireland Ltd. All rights reserved.PI I : S0738-3991( 98 )00075-5

´48 M. Gabriela Perez et al. / Patient Education and Counseling 36 (1999) 47 –55

literature emphasizes the importance of taking into about the disease and to teach them asthma manage-consideration cultural differences when adapting and ment abilities and strategies that, in the long run,applying self-management educational programs that could result in reduced morbidity indexes, such ashave been developed in diverse countries [13]. diminished frequency and less severe attacks.

In South America, few if any, studies have been The program consisted of a self-managementpublished on educational efforts in asthma manage- educational package adapted from different educa-ment in spite of the high prevalence of this disease tional and self-management programs developed in[14]. The education of the asthmatic patient is the United States, such as Superstuff [6] and Livingmerely given by the attending doctor, usually a with Asthma [8,18]. These programs are based ongeneral practitioner, a pediatrician, an allergist, or the Expanded Cognitive Social Learning Model,neumonologist during office visits. Specifically in which states that there is a reciprocity and inter-Venezuela, the health system is basically oriented dependence between cognition, physiology, socialtowards tertiary prevention, being medical doctors and physical environment, and behavior [13].responsible for the treatment.

Physicians are generally under great pressure dueto the high volume of patients, thus spending 20 2. Method.minutes at the most with each patient in privatepractice, and from 10 to 15 minutes when treating 2.1. Participantspatients in public hospitals. During that time, theygive priority to physical examination, medical treat- Twenty nine children, 16 girls and 13 boys, agedment and environmental control leaving virtually no between 6 and 14 years old, participated with theirtime to education and self-management training [15]. parents in the study. Children had an asthma diag-Of all the health professionals involved in the care of nosis according to medical criteria [19]. The chil-asthmatic patients, none have the training or the dren’s asthma severity ranged from mild to severeresponsibility to properly educate the patient about [19]: 55.2% had mild asthma, 41.4% had moderatethe disease and its management. In general, patient asthma and 3.4% had severe asthma.education has not been an aspect addressed directly Initially, 43 parents agreed to participate andin the professional schools or the applied settings. completed the pre-test but 14 dropped from the study

In Venezuela, the tropical and humid climate at some point. From pre-test to post-test, there was acreates favorable conditions for the growth of many 33% attrition rate.well known allergens such as the house dust-mite.Epidemiological reports highlight childhood asthma 2.2. Instrumentsas a public health problem due to its high morbidityrate [16]. In Caracas, the capital city, asthma is the 2.2.1. Children’s structured interviewfirst cause of emergency and general visits in many This interview schedule comprised 33 questionshospitals [17]. In spite of this fact, there is no assessing children’s knowledge about signs, symp-reported attempt to implement an educational pro- toms, antecedents, and management of asthma.gram for asthmatic patients. This may be due to theapproach of providing the patient with, basically, 2.2.2. Children’s asthma self-management indexremedial care during crises episodes instead of This Index was developed for the present studycontinuous medical care with emphasis on preven- based on the specific critical self-managementtion and education. This has been intensified because abilities described by Wilson-Pessano [2]. Nineteenof the economic crisis of the country. items that applied to prevention, intervention and

Having identified the need for more systematic compensatory behaviors were selected and dividededucation, this study aims at evaluating the effective- into three sub-indexes): Support and Informationness of a self-management educational program Request, Crisis Management, and Preventive Mea-combined with the pre-existing medical treatment in sures, which corresponded to the ones mentioned byorder to increase children’s and parents’ knowledge Clark, Feldman, Evans et al. [4]. The application of

´M. Gabriela Perez et al. / Patient Education and Counseling 36 (1999) 47 –55 49

this instrument involved reading out to the child the 2.2.9. Informative brochure evaluation sheet fordescription of a particular situation related to asthma parentsattacks and registering his-her answers verbatim. At the end of the program, parents were asked to

fill out a form in order to evaluate content, clarityand usefulness of the informative brochure.2.2.3. Asthma problem behavior checklist

This instrument was translated and adapted from2.2.10. Program evaluation sheet for parents

Creer, Marion and Creer’s [20] into a four-pointThis was designed to obtain the parents’ opinion

Likert scale. The present version consisted of 56on the content and usefulness of the program.

items with a Cronbach’s alpha of 0.875.

2.3. Design2.2.4. Morbidity index

This Index was especially designed for the present Participants were randomly assigned to either thestudy, with the information of n8 of emergencies, n8 experimental or control group. All children wereof crises and severity given by the medical reports in receiving medical treatment consisting of Theophyl-the last six months. This index was calculated as line (slow released), inhaled corticosteriods (Be-follows: clometasone, Budisonide), and Bronchodilators as

needed.Morbidity Index 5 N8 emergencies 1 0.5 Finally, there were 17 children in the experimental

group and 12 in the control. In order to adapt the3 N8 crises 1 0.5x severityteaching environment and the practical exercisesaccording to their age, children of the experimental

2.2.5. Program evaluation sheet for children group were divided into three sub-groups (aged 6–8,This instrument was used to evaluate the chil- –11 and 12–14).

dren’s opinion about the usefulness of each type of For evaluation, a pre-test and a post-test measuresexercise practiced, the material used and the program were taken. The experimental group was also evalu-in general. It was administered during the last ated in a two-month follow-up.session.

2.4. Procedure.2.2.6. Parents’ structured interview.

Once all children had completed the pretest, theyIt collected demographic information and morbidi-were assigned to one of the conditions.ty indexes – number of crises, emergencies and

hospitalizations.2.4.1. Experimental condition.

2.2.7. Parents’ asthma management index 2.4.1.1. Parents’ programThis Index of 6 items evaluated parents’ ability to During the first week of the program, parents

prevent and manage crisis and compliance with attended a 90-minute talk about the medical aspectsmedical instructions. Answers were recorded ver- of asthma given by the allergy specialist treating thebatim and scored by two specialists. Agreement level children. The talk included physioanatomy of thebetween experts was 85% in the first evaluation. lungs, the medical definition of asthma, incidence ofAdditionally, this index showed a Kappa coefficient the disease, precipitants, relationship between asthmaof 0.86. and allergies, medical assessment of the asthmatic

patient, and treatment. The importance of having a2.2.8. Parents’ knowledge questionnaire contingency plan was also discussed. During the

This 15-item questionnaire about asthma knowl- second week, parents participated in a second 90-edge and misconceptions was designed for the minute talk on psychological aspects of asthma,present study. which covered the relationship between asthma and


psychological aspects, emotional consequences of 2.4.1.3. Control conditionsuffering from asthma, protective factors of emotion- Children received exclusively the medical careal problems, behavioral management, children’s self- described previously.management and adequate expectations according totheir age and how to reinforce them. Asthma as agenerator of stress, self-control under stress and 3. Results.general management of the asthmatic child promot-ing his /her normal physical and emotional develop- 3.1. Preliminary analysis.ment were also topics touched upon during thissecond talk. At the end, the participants received a Independent t tests of differences at pre-testbrochure specially designed for this study which revealed no differences between groups according tocontained information on the medical and psycholog- age, sex, Children’s Asthma Self-management Index,ical management of asthmatic children, so that Children’s Asthma Knowledge, Asthma Problemparents could reinforce the abilities their children Behavior Checklist, and Parents’ Asthma Knowl-were learning and have written material for future edge. Significant pre-intervention differences werereference. found only between groups in the Morbidity Index (t

(27)52.16; P,0.04) indicating that the experimen-tal group had higher values in this variable. On the

2.4.1.2. Children’s program other hand, parents of the control group reportedThe experimental group participated in six 60- higher values in the Asthma Management Index at

minute sessions on asthma self-management. During the baseline level (t (27)522.30; P,0.029).these sessions basic information on the physiology of In order to control the effects of subpopulationasthma, identification of personal signs of asthma, biases, participants that completed the study up toidentification of individual precipitants, decision the post-test phase and those that left were comparedmaking when confronted by precipitants, signs and using independent t tests of differences at pre-test.symptoms of asthma, relaxation training, importance For the experimental group, asthma severity wasand objectives of medicines, and adequate communi- significantly higher in the ones that dropped outcation with doctors were dealt with. Substitution of (t(17)52.72; P,0.015). No differences were foundnegative self-instruction for a positive one, imagin- for the control group.ary and in vivo practice of relaxation in front of anasthma situation, identification and practice of criti- 3.2. Effects of a self-management educationalcal asthma self-management abilities, operational program. Children’s self-report measuresdefinition of an asthma crisis, training in deepbreathing, and practice in decision making during an The experimental group showed a significantasthma crisis also constituted topics of these ses- difference from the control group in the post-test insions. The techniques used were information, model- Asthma Knowledge (t (27)53.64; P,0.001), in theing, positive reinforcement (verbal, stickers, pencils, total score of the Asthma Self-Management Abilitieschocolate), group dynamics, behavioral practice, Index (t(27)54.5; P,0.000), as well as in the threerole-playing, feedback. Self-monitoring, paper and sub-indexes: Support and Information Requestpencil exercises, cognitive restructuring, decision- (t(27)52.49; P,0.002), Crisis Managementmaking, practice of positive self-instructions, relaxa- (t(27)53.76; P,0.001), and Preventive Measurestion training, and environmental contingency plan. (t(27)52.55; P,0.02). This indicates that comparedFor the conduction of the sessions, audio-visual to the control group, the study group showed aftermaterial was prepared. At the end of the program, all treatment a significant improvement in informationchildren that completed the experimental group about the disease and in the execution of self-man-training received a diploma. In addition to the agement abilities to cope with it.educational program, children received standard In order to have a better understanding of themedical care. changes observed in the Asthma Self-management


Index in the Experimental Group, a descriptive 3.2.1. Morbidity index.analysis was performed. It was found that practice of A significant impact of the educational self-man-relaxation, positive thinking and greater initiative to agement program on the Morbidity Index was foundput into practice these abilities independently, in the experimental group showing that, after treat-belonging to the sub-index 2 ‘‘Intervention Be- ment, the study group reported fewer crisis,havior’’, were statistically the most sensitive to emergencies and lower levels of severity accordingtreatment (P,0.001). to medical doctors (Table 1). This significant im-

Using paired t test of differences from pre-test to provement was also revealed in the comparisonpost-test, the experimental group reported significant between pre-test and follow up measures (Table 2).improvement in all studied variables: Asthma Prob- Older children had more crises, emergencies andlem Behavior Checklist, Children’s Asthma Knowl- more severe asthma according to the attendingedge, Total score and in sub-indexes Support and physician (r50.417; P,0.027). This relationshipInformation Request and Crisis Management of the was maintained when initial severity was controlledAsthma Self-management Abilities Index (Table 1). (r partial50.45; P,0.019). Children that signifi-

Paired t test differences from pre-test to follow/up cantly improved in their post-test Morbidity Indexof the experimental group showed significant im- had a mean age of 8.4 compared to the children thatprovements on Asthma Problem Behavior Checklist had a relapse in this Index whose mean age was 10.7and Asthma Knowledge, while the improvements on (t(26)522.35; P,0.027).the Total score and in the three sub-indexes ofAsthma Self-management abilities did not reach 3.2.2. Parents’ self-report measuressignificance level (Table 2). Parents of the children in the study group reported

No statistical differences were found in any of the a significant increase in the Asthma Knowledgechildren’s variables when pre and post comparisons compared to the control group (t (26)52.87;P,

were made in the control group. 0.008).

Table 1Intragroups Pre /Post t test comparisons of children’s variables, morbidity index and parents’ variables

Experimental group Control group

Means Means t paired P Means Means t paired PPre [17] Pre [17] Pre [12] Post [12]

Children’s variables:–Total score of 16.71 21.77 23.60 0.002 13.91 17.16 21.83 NSasthma self-management Index–Sub-index 1: support 2.20 10.94 210.57 0.000 2.17 1.91 0.64 NSand Informationrequest–Sub-index 2: crisis 10.94 15.00 24.16 0.001 9.08 11.83 22.01 NSmanagement–Sub-index 3: 3.47 4.00 21.64 NS 2.67 3.41 21.62 NSpreventive measures–Asthma knowledge 2.29 2.94 23.39 0.004 2.25 2.17 0.43 NS–Asthma problem 183 194 4.91 0.000 187 192 21.80 NSBehavior checklist–Morbidity index 2.22 1.53 2.13 0.05 1.5 1.12 1.13 NS

Parents variables:–Asthma 2.05 2.41 22.07 0.05 2.54 2.18 2.80 0.017management–Asthma knowledge 24.06 27.68 2.47 0.026 21.19 22.75 0.67 NS


Table 2Experimental group intra pre / follow up t test comparisons of children’s variables morbidity index and parents’ variables

Experimental group

Means Means t paired PPre Seg(N517) (N515)

Children’s variables:–Total score of 16.62 19.56 21.72 NSasthma self-management index–Sub-index 1: support and 2.21 2.42 20.71 NSinformationrequest–Sub-index 2: crisis 10.80 13.2 21.79 NSmanagement (0.095)–Sub-index 3: 3.40 3.86 21.39preventive measures NS–Asthma knowledge 2.33 3.26 24.53 0.000–Asthma problem 183 194 22.30 0.036Behavior checklist–Morbidity index 2.46 0.75 5.03 0.000

Parents variables:–Asthma management 2.00 2.86 24.03 0.001–Asthma knowledge 23.26 26.60 22.17 0.048

Intra-group pre /post comparisons in the ex- niques practiced more often were relaxation, deepperimental group revealed significant improvements breathing, environmental control and avoidance ofin Parents’ Asthma Management and Knowledge other precipitants, and anxiety self-control. Someafter the intervention (Table 1). These increases were parents suggested that the program should have moremaintained in the pre follow-up comparisons (Table sessions for the children, that it should be available2). to all asthmatic children and their parents, and that

The control group showed a significant decrease in contacts with the researcher should be maintained sothe Asthma Management Index in the pre-post that they could receive updated information, tech-comparison, indicating that after a period of time, niques with regards to the illness itself and any newthese parents experienced difficulties coping with technique for avoiding precipitants and for dealingtheir children’s disease (Table 1). with attacks.

3.2.3. Children’s and parents’ perception of theprogram. 4. Discussion.

The results presented in Table 3 show that for thechildren in the experimental group, the relaxation The purpose of the present study was to evaluatetraining, cognitive restructuring techniques, decision the effect of an asthma self-management educationalmaking, and recognition of triggering stimuli and program, carried out in an outpatient clinic. Thecrises management were the techniques used most results of the present study show that the active usefrequently. In addition, these children reported that of information and cognitive-behavioral techniquesthey perceived they could control their asthma. were successful in achieving an improvement in

The results of the parents Program Evaluation are knowledge and asthma self-management abilitiesshown in Table 4. Parents reported that they had a independently of the cultural context [21–24].positive experience learning about asthma. The tech- The aspects most sensitive to the impact of the


Table 3Descriptive analysis of the evolution sheet for children, n517

Item % of endorsement

d The program had helped me to know 100better my illness and to control it

d From the program, the exercises that helpedme the most to get better were:– Relaxation training 87.5– The written exercises 87.5– Role playing 87.5

d Have you practiced:– Relaxation 93.75– Deep breathing 93.75

d How much have you learned with the program:– Nothing 0.00– More or less 6.25– A lot 37.7– Very much 56.25

d Are you able to control your asthma?– No 0.00– A little 0.00– A lot 43.75– Very much 56.25

Table 4Descriptive analysis of the evaluation sheet for parents, n517

Item % of endorsement

d The program has helped my kid to know 87.5more about his /her illness

d The program has helped my kid to control 68.75better the disease

d I feel more secure about what I do to control 75the disease

d The program has helped me, as a parent, to 75know more about asthma

d The program has helped me to control my 62.5child’s disease more effectively

d Have you practiced some of the 68.75recommended techniques?

d Were your expectations about the programfulfilled?– Totally 68– Partially 32

d About the Informative brochure,– It helped a lot to get information about 75asthma:– It helped very much to learn how to help my 81.25asthmatic child– It had helped me to know how to manage 81.25properly my child


program were the abilities for asking for support and explain why they might have been less motivated tocomplete the different evaluations, which took timeinformation, crisis management and preventive mea-and effort, since children were less sick and parentssures. Children of the experimental group increasedfelt they managed the illness.their actual practice to identify precipitants, warning

Taking into account the above mentioned limita-signs and symptoms together with their generaltions, the present study, the first one in Venezuela,information about the disease.demonstrated the positive and powerful effect of theChildren’s active participation in self-care wasprogram and its potential applicability in an outpati-also improved as demonstrated by a decrease of theent setting where traditional medical interventionnumber of crises, emergencies and severity of attackswas the only treatment available. This program mayreflected in the Morbidity Index. In addition, chil-need to be adapted if we want to satisfy the currentdren’s perception of the program was highly posi-need for a wide scale implementation of an asthmative. These results confirm the evidence regardingeducational program. One of the difficulties tothe powerful effect of self-management educationalimplement these kind of programs is that patientprograms of asthmatic children and their parentseducation is not considered a priority by most[2,4–10,13,16,18,20,25–27].doctors who concentrate basically on medical treat-In the present study age was found to be related toment and availability of medications. Besides, medi-the benefits of the educational program. Youngercal doctors and other health professionals neither arechildren benefited more, independently of the severi-trained nor consider that have the time to educatety of their asthmatic condition. This finding differsasthmatic patients within their workload. The charac-from previous ones in which efficacy of the programteristics of the present program require specialhas been found to be directly proportional to theprofessional training as well as a portion of timeseverity of the condition [6,7,25]. We can infer thatwithin the workload dedicated to these kind ofcontent and style of the present program satisfiedactivities [15].

more the needs of the younger group than the olderA major change is required in the way medical

one. This result highlights the true need of consider-doctors view the needs of asthma patients so that

ing different strategies, activities and types of materi- education plays an important role together withal according to age. asthmatic medication treatment. This could then be

Concerning the effects of the program on parents, followed by proper training in health education atresults showed a statistically significant increase in professional schools and continuous education pro-knowledge about the illness and management grams by doctors and other health professionals thatabilities of their children’s crisis. Analyses revealed could get more involved in the care of asthmaticnot only the existing necessity of being educated patients. Otherwise, the presence of trained psycho-about different aspects of the disease and its proper logists may be required.management, but it also unveiled the need to count In Venezuela, as in the rest of the world, state ofon some kind of educational and emotional support. the art medical treatment for asthma has not beenThese results are similar to those of Clark et al. [4] effective at reducing the disease’s high prevalenceand Indinnimeo, Midulla, Hindi-Alexander, et al. and incidence. As asthma is one of the first causes of[21] who have also reported significant improvement pediatric consultation, great effort should be devotedin parents’ asthma self-management abilities after a to design educational programs as well as to inte-systematic training. grate education into the medical care routines. The

In spite of the encouraging results of the present present study may be the first step to overcome ourresearch, they should be taken cautiously due to the lack of tradition in health education in asthmaticrather small sample size, limited range of socio- patients.economic status and high experimental mortality.

Regarding the attrition rate, the majority of thedropouts were from the control group and it is Referencesworthwhile noticing that this group had a lowerasthma severity and at the same time their parents [1] Siegel SC, Katz RM, Rachelesky GS. Asthma in infancy andhad higher Asthma Management Index. This could childhood. In: Middeleton E Jr, Reed ChE, Ellis EF, editors.


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