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 control of childhood asthma ´ Gabriela Perez ´ a , *, Lya Feldman a , Fernan ´ Caballero b Marıa a

´ Bolıvar ´ , Departamento de Ciencia y Tecnologıa ´ del Comportamiento, Apartado Postal 89.000, Baruta 1090, Universidad Simon Caracas, Venezuela b ´ 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 children between 6 and 14 years old and their parents implemented in an office setting in Venezuela. Children were randomly assigned 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 information giving and cognitive-behavioral strategies for the children, and two talks and an informative brochure for the parents. Results of 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 the control group. The educational Self-management program had a significant impact on the Morbidity Index of the study group at post-test (P , 0.05). Younger children benefited more from the program compared to older ones (P , 0.09). Children’s age is highlighted as a critical variable in designing asthma educational programs. Results suggest the effectiveness on these programs independently of the cultural context.  1999 Elsevier Science Ireland Ltd. Keywords: Children; Asthma; Self-management

1. Introduction Bronchial asthma is the most frequent chronic respiratory disease in children. It is a multi-factorial disease influenced by biological, environmental, psychological and social factors [1]. An effective control and prevention of the disease requires a combination of adequate medical treatment, environ*Corresponding author. E-mail: [email protected]

mental control, education and self-management training of the child and the family [2,3]. It has been demonstrated in various studies undertaken in different countries that self-management programs for asthmatic children reduce the number of hospitalizations, emergencies and crises [2–12]. These programs can also increase knowledge about the disease, self-management abilities and improve quality of life and school attendance. [2–12]. However, in spite of these results, a review of the

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literature emphasizes the importance of taking into consideration cultural differences when adapting and applying self-management educational programs that have been developed in diverse countries [13]. In South America, few if any, studies have been published on educational efforts in asthma management in spite of the high prevalence of this disease [14]. The education of the asthmatic patient is merely given by the attending doctor, usually a general practitioner, a pediatrician, an allergist, or neumonologist during office visits. Specifically in Venezuela, the health system is basically oriented towards tertiary prevention, being medical doctors responsible for the treatment. Physicians are generally under great pressure due to the high volume of patients, thus spending 20 minutes at the most with each patient in private practice, and from 10 to 15 minutes when treating patients in public hospitals. During that time, they give priority to physical examination, medical treatment and environmental control leaving virtually no time to education and self-management training [15]. Of all the health professionals involved in the care of asthmatic patients, none have the training or the responsibility to properly educate the patient about the disease and its management. In general, patient education has not been an aspect addressed directly in the professional schools or the applied settings. In Venezuela, the tropical and humid climate creates favorable conditions for the growth of many well known allergens such as the house dust-mite. Epidemiological reports highlight childhood asthma as a public health problem due to its high morbidity rate [16]. In Caracas, the capital city, asthma is the first cause of emergency and general visits in many hospitals [17]. In spite of this fact, there is no reported attempt to implement an educational program for asthmatic patients. This may be due to the approach of providing the patient with, basically, remedial care during crises episodes instead of continuous medical care with emphasis on prevention and education. This has been intensified because of the economic crisis of the country. Having identified the need for more systematic education, this study aims at evaluating the effectiveness of a self-management educational program combined with the pre-existing medical treatment in order to increase children’s and parents’ knowledge

about the disease and to teach them asthma management abilities and strategies that, in the long run, could result in reduced morbidity indexes, such as diminished frequency and less severe attacks. The program consisted of a self-management educational package adapted from different educational and self-management programs developed in the United States, such as Superstuff [6] and Living with Asthma [8,18]. These programs are based on the Expanded Cognitive Social Learning Model, which states that there is a reciprocity and interdependence between cognition, physiology, social and physical environment, and behavior [13].

2. Method.

2.1. Participants Twenty nine children, 16 girls and 13 boys, aged between 6 and 14 years old, participated with their parents in the study. Children had an asthma diagnosis according to medical criteria [19]. The children’s asthma severity ranged from mild to severe [19]: 55.2% had mild asthma, 41.4% had moderate asthma and 3.4% had severe asthma. Initially, 43 parents agreed to participate and completed the pre-test but 14 dropped from the study at some point. From pre-test to post-test, there was a 33% attrition rate.

2.2. Instruments 2.2.1. Children’ s structured interview This interview schedule comprised 33 questions assessing children’s knowledge about signs, symptoms, antecedents, and management of asthma. 2.2.2. Children’ s asthma self-management index This Index was developed for the present study based on the specific critical self-management abilities described by Wilson-Pessano [2]. Nineteen items that applied to prevention, intervention and compensatory behaviors were selected and divided into three sub-indexes): Support and Information Request, Crisis Management, and Preventive Measures, which corresponded to the ones mentioned by Clark, Feldman, Evans et al. [4]. The application of

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this instrument involved reading out to the child the description of a particular situation related to asthma attacks and registering his-her answers verbatim.

2.2.3. Asthma problem behavior checklist This instrument was translated and adapted from Creer, Marion and Creer’s [20] into a four-point Likert scale. The present version consisted of 56 items with a Cronbach’s alpha of 0.875.

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2.2.9. Informative brochure evaluation sheet for parents At the end of the program, parents were asked to fill out a form in order to evaluate content, clarity and usefulness of the informative brochure. 2.2.10. Program evaluation sheet for parents This was designed to obtain the parents’ opinion on the content and usefulness of the program. 2.3. Design

2.2.4. Morbidity index This Index was especially designed for the present study, with the information of n8 of emergencies, n8 of crises and severity given by the medical reports in the last six months. This index was calculated as follows: Morbidity Index 5 N8 emergencies 1 0.5 3 N8 crises 1 0.5x severity

2.2.5. Program evaluation sheet for children This instrument was used to evaluate the children’s opinion about the usefulness of each type of exercise practiced, the material used and the program in general. It was administered during the last session.

Participants were randomly assigned to either the experimental or control group. All children were receiving medical treatment consisting of Theophylline (slow released), inhaled corticosteriods (Beclometasone, Budisonide), and Bronchodilators as needed. Finally, there were 17 children in the experimental group and 12 in the control. In order to adapt the teaching environment and the practical exercises according to their age, children of the experimental group were divided into three sub-groups (aged 6–8, –11 and 12–14). For evaluation, a pre-test and a post-test measures were taken. The experimental group was also evaluated in a two-month follow-up.

2.4. Procedure. 2.2.6. Parents’ structured interview. It collected demographic information and morbidity indexes – number of crises, emergencies and hospitalizations.

Once all children had completed the pretest, they were assigned to one of the conditions.

2.4.1. Experimental condition. 2.2.7. Parents’ asthma management index This Index of 6 items evaluated parents’ ability to prevent and manage crisis and compliance with medical instructions. Answers were recorded verbatim and scored by two specialists. Agreement level between experts was 85% in the first evaluation. Additionally, this index showed a Kappa coefficient of 0.86. 2.2.8. Parents’ knowledge questionnaire This 15-item questionnaire about asthma knowledge and misconceptions was designed for the present study.

2.4.1.1. Parents’ program During the first week of the program, parents attended a 90-minute talk about the medical aspects of asthma given by the allergy specialist treating the children. The talk included physioanatomy of the lungs, the medical definition of asthma, incidence of the disease, precipitants, relationship between asthma and allergies, medical assessment of the asthmatic patient, and treatment. The importance of having a contingency plan was also discussed. During the second week, parents participated in a second 90minute talk on psychological aspects of asthma, which covered the relationship between asthma and

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psychological aspects, emotional consequences of suffering from asthma, protective factors of emotional problems, behavioral management, children’s selfmanagement and adequate expectations according to their age and how to reinforce them. Asthma as a generator of stress, self-control under stress and general management of the asthmatic child promoting his / her normal physical and emotional development were also topics touched upon during this second talk. At the end, the participants received a brochure specially designed for this study which contained information on the medical and psychological management of asthmatic children, so that parents could reinforce the abilities their children were learning and have written material for future reference.

2.4.1.2. Children’ s program The experimental group participated in six 60minute sessions on asthma self-management. During these sessions basic information on the physiology of asthma, identification of personal signs of asthma, identification of individual precipitants, decision making when confronted by precipitants, signs and symptoms of asthma, relaxation training, importance and objectives of medicines, and adequate communication with doctors were dealt with. Substitution of negative self-instruction for a positive one, imaginary and in vivo practice of relaxation in front of an asthma situation, identification and practice of critical asthma self-management abilities, operational definition of an asthma crisis, training in deep breathing, and practice in decision making during an asthma crisis also constituted topics of these sessions. The techniques used were information, modeling, positive reinforcement (verbal, stickers, pencils, chocolate), group dynamics, behavioral practice, role-playing, feedback. Self-monitoring, paper and pencil exercises, cognitive restructuring, decisionmaking, practice of positive self-instructions, relaxation training, and environmental contingency plan. For the conduction of the sessions, audio-visual material was prepared. At the end of the program, all children that completed the experimental group training received a diploma. In addition to the educational program, children received standard medical care.

2.4.1.3. Control condition Children received exclusively the medical care described previously.

3. Results.

3.1. Preliminary analysis. Independent t tests of differences at pre-test revealed no differences between groups according to age, sex, Children’s Asthma Self-management Index, Children’s Asthma Knowledge, Asthma Problem Behavior Checklist, and Parents’ Asthma Knowledge. Significant pre-intervention differences were found only between groups in the Morbidity Index (t (27)52.16; P,0.04) indicating that the experimental group had higher values in this variable. On the other hand, parents of the control group reported higher values in the Asthma Management Index at the baseline level (t (27)5 22.30; P,0.029). In order to control the effects of subpopulation biases, participants that completed the study up to the post-test phase and those that left were compared using independent t tests of differences at pre-test. For the experimental group, asthma severity was significantly higher in the ones that dropped out (t(17)52.72; P,0.015). No differences were found for the control group.

3.2. Effects of a self-management educational program. Children’ s self-report measures The experimental group showed a significant difference from the control group in the post-test in Asthma Knowledge (t (27)53.64; P,0.001), in the total score of the Asthma Self-Management Abilities Index (t(27)54.5; P,0.000), as well as in the three sub-indexes: Support and Information Request (t(27)52.49; P,0.002), Crisis Management (t(27)53.76; P,0.001), and Preventive Measures (t(27)52.55; P,0.02). This indicates that compared to the control group, the study group showed after treatment a significant improvement in information about the disease and in the execution of self-management abilities to cope with it. In order to have a better understanding of the changes observed in the Asthma Self-management

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Index in the Experimental Group, a descriptive analysis was performed. It was found that practice of relaxation, positive thinking and greater initiative to put into practice these abilities independently, belonging to the sub-index 2 ‘‘Intervention Behavior’’, were statistically the most sensitive to treatment (P,0.001). Using paired t test of differences from pre-test to post-test, the experimental group reported significant improvement in all studied variables: Asthma Problem Behavior Checklist, Children’s Asthma Knowledge, Total score and in sub-indexes Support and Information Request and Crisis Management of the Asthma Self-management Abilities Index (Table 1). Paired t test differences from pre-test to follow / up of the experimental group showed significant improvements on Asthma Problem Behavior Checklist and Asthma Knowledge, while the improvements on the Total score and in the three sub-indexes of Asthma Self-management abilities did not reach significance level (Table 2). No statistical differences were found in any of the children’s variables when pre and post comparisons were made in the control group.

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3.2.1. Morbidity index. A significant impact of the educational self-management program on the Morbidity Index was found in the experimental group showing that, after treatment, the study group reported fewer crisis, emergencies and lower levels of severity according to medical doctors (Table 1). This significant improvement was also revealed in the comparison between pre-test and follow up measures (Table 2). Older children had more crises, emergencies and more severe asthma according to the attending physician (r50.417; P,0.027). This relationship was maintained when initial severity was controlled (r partial50.45; P,0.019). Children that significantly improved in their post-test Morbidity Index had a mean age of 8.4 compared to the children that had a relapse in this Index whose mean age was 10.7 (t(26)5 22.35; P,0.027). 3.2.2. Parents’ self-report measures Parents of the children in the study group reported a significant increase in the Asthma Knowledge compared to the control group (t (26)52.87;P, 0.008).

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

Children’ s variables: –Total score of asthma selfmanagement Index –Sub-index 1: support and Information request –Sub-index 2: crisis management –Sub-index 3: preventive measures –Asthma knowledge –Asthma problem Behavior checklist –Morbidity index Parents variables: –Asthma management –Asthma knowledge

Control group

Means Pre [17]

Means Pre [17]

t paired

16.71

21.77

23.60

2.20

10.94

10.94

P

Means Pre [12]

Means Post [12]

t paired

P

0.002

13.91

17.16

21.83

NS

210.57

0.000

2.17

1.91

0.64

NS

15.00

24.16

0.001

9.08

11.83

22.01

NS

3.47

4.00

21.64

2.67

3.41

21.62

NS

2.29 183

2.94 194

23.39 4.91

0.004 0.000

2.25 187

2.17 192

0.43 21.80

NS NS

2.22

1.53

2.13

0.05

1.5

1.12

1.13

NS

2.05

2.41

22.07

0.05

2.54

2.18

2.80

24.06

27.68

2.47

0.026

21.19

22.75

0.67

NS

0.017 NS

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

Children’ s variables: –Total score of asthma selfmanagement index –Sub-index 1: support and information request –Sub-index 2: crisis management –Sub-index 3: preventive measures –Asthma knowledge –Asthma problem Behavior checklist –Morbidity index Parents variables: –Asthma management –Asthma knowledge

Means Pre (N517)

Means Seg (N515)

t paired

P

16.62

19.56

21.72

NS

2.21

2.42

20.71

NS

21.79

NS (0.095)

10.80

13.2

3.40

3.86

21.39

2.33 183

3.26 194

24.53 22.30

NS 0.000 0.036

2.46

0.75

5.03

0.000

2.00 23.26

2.86 26.60

24.03 22.17

0.001 0.048

Intra-group pre / post comparisons in the experimental group revealed significant improvements in Parents’ Asthma Management and Knowledge after the intervention (Table 1). These increases were maintained in the pre follow-up comparisons (Table 2). The control group showed a significant decrease in the Asthma Management Index in the pre-post comparison, indicating that after a period of time, these parents experienced difficulties coping with their children’s disease (Table 1).

3.2.3. Children’ s and parents’ perception of the program. The results presented in Table 3 show that for the children in the experimental group, the relaxation training, cognitive restructuring techniques, decision making, and recognition of triggering stimuli and crises management were the techniques used most frequently. In addition, these children reported that they perceived they could control their asthma. The results of the parents Program Evaluation are shown in Table 4. Parents reported that they had a positive experience learning about asthma. The tech-

niques practiced more often were relaxation, deep breathing, environmental control and avoidance of other precipitants, and anxiety self-control. Some parents suggested that the program should have more sessions for the children, that it should be available to all asthmatic children and their parents, and that contacts with the researcher should be maintained so that they could receive updated information, techniques with regards to the illness itself and any new technique for avoiding precipitants and for dealing with attacks.

4. Discussion. The purpose of the present study was to evaluate the effect of an asthma self-management educational program, carried out in an outpatient clinic. The results of the present study show that the active use of information and cognitive-behavioral techniques were successful in achieving an improvement in knowledge and asthma self-management abilities independently of the cultural context [21–24]. The aspects most sensitive to the impact of the

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

d d

d

d

d

Item

% of endorsement

The program had helped me to know better my illness and to control it From the program, the exercises that helped me the most to get better were: – Relaxation training – The written exercises – Role playing Have you practiced: – Relaxation – Deep breathing How much have you learned with the program: – Nothing – More or less – A lot – Very much Are you able to control your asthma? – No – A little – A lot – Very much

100

87.5 87.5 87.5 93.75 93.75 0.00 6.25 37.7 56.25 0.00 0.00 43.75 56.25

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

d d d d d d d

d

Item

% of endorsement

The program has helped my kid to know more about his / her illness The program has helped my kid to control better the disease I feel more secure about what I do to control the disease The program has helped me, as a parent, to know more about asthma The program has helped me to control my child’s disease more effectively Have you practiced some of the recommended techniques? Were your expectations about the program fulfilled? – Totally – Partially About the Informative brochure, – It helped a lot to get information about asthma: – It helped very much to learn how to help my asthmatic child – It had helped me to know how to manage properly my child

87.5 68.75 75 75 62.5 68.75

68 32 75 81.25 81.25

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program were the abilities for asking for support and information, crisis management and preventive measures. Children of the experimental group increased their actual practice to identify precipitants, warning signs and symptoms together with their general information about the disease. Children’s active participation in self-care was also improved as demonstrated by a decrease of the number of crises, emergencies and severity of attacks reflected in the Morbidity Index. In addition, children’s perception of the program was highly positive. These results confirm the evidence regarding the powerful effect of self-management educational programs of asthmatic children and their parents [2,4–10,13,16,18,20,25–27]. In the present study age was found to be related to the benefits of the educational program. Younger children benefited more, independently of the severity of their asthmatic condition. This finding differs from previous ones in which efficacy of the program has been found to be directly proportional to the severity of the condition [6,7,25]. We can infer that content and style of the present program satisfied more the needs of the younger group than the older one. This result highlights the true need of considering different strategies, activities and types of material according to age. Concerning the effects of the program on parents, results showed a statistically significant increase in knowledge about the illness and management abilities of their children’s crisis. Analyses revealed not only the existing necessity of being educated about different aspects of the disease and its proper management, but it also unveiled the need to count on some kind of educational and emotional support. These results are similar to those of Clark et al. [4] and Indinnimeo, Midulla, Hindi-Alexander, et al. [21] who have also reported significant improvement in parents’ asthma self-management abilities after a systematic training. In spite of the encouraging results of the present research, they should be taken cautiously due to the rather small sample size, limited range of socioeconomic status and high experimental mortality. Regarding the attrition rate, the majority of the dropouts were from the control group and it is worthwhile noticing that this group had a lower asthma severity and at the same time their parents had higher Asthma Management Index. This could

explain why they might have been less motivated to complete the different evaluations, which took time and effort, since children were less sick and parents felt they managed the illness. Taking into account the above mentioned limitations, the present study, the first one in Venezuela, demonstrated the positive and powerful effect of the program and its potential applicability in an outpatient setting where traditional medical intervention was the only treatment available. This program may need to be adapted if we want to satisfy the current need for a wide scale implementation of an asthma educational program. One of the difficulties to implement these kind of programs is that patient education is not considered a priority by most doctors who concentrate basically on medical treatment and availability of medications. Besides, medical doctors and other health professionals neither are trained nor consider that have the time to educate asthmatic patients within their workload. The characteristics of the present program require special professional training as well as a portion of time within the workload dedicated to these kind of activities [15]. A major change is required in the way medical doctors view the needs of asthma patients so that education plays an important role together with asthmatic medication treatment. This could then be followed by proper training in health education at professional schools and continuous education programs by doctors and other health professionals that could get more involved in the care of asthmatic patients. Otherwise, the presence of trained psychologists may be required. In Venezuela, as in the rest of the world, state of the art medical treatment for asthma has not been effective at reducing the disease’s high prevalence and incidence. As asthma is one of the first causes of pediatric consultation, great effort should be devoted to design educational programs as well as to integrate education into the medical care routines. The present study may be the first step to overcome our lack of tradition in health education in asthmatic patients.

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