A

Study of a Program

Self-Care Rehabilitation in Pediatric Asthma

Neal Whitman,EdD Dee West, PhD Franklin K. Brough, PhD Molly Welch, BA The Self-Care Rehabilitation in Pediatric Asthma (SCRPA) project was designed to ascertain to which children with asthma are able to acquire the asthma knowledge and skills presented in a self-management training program conducted by the American Lung Association of Utah and (2) the effect of such training on the asthma experience. The preschool SCRPA Curriculum (ages 2-5) consisted of six 1-hour classes scheduled twice a week for 3 weeks. The first and last classes were for one or both parents only, and the middle four sessions were for the child and parent(s). The school-age SCRPA curriculum (ages 6-14) consisted of eight 90-minute classes for both child and parent(s) scheduled twice a week for 4 weeks. Private physicians referred 21 preschool children and 38 school-age children into the program. The school-age children were randomly assigned to a study or control group, and the preschool children served as their own controls. A comparison of asthma episodes during the 3 months before and after training showed a statistically significant decrease in the number of episodes but no change in severity in the preschool, school study, and school control groups. The decrease in episodes for the control groups suggest that the family record keeping required of all subjects may have a beneficial effect, a phenomenon worth further investigation. Also, the school-age group, in pre- and posttesting, demonstrated that the SCRPA curriculum increased knowledge and skills in the study group, changes not found in the control group.

(1) the level

BACKGROUND Health educators have long recognized that children and their parents play a key role in the management of childhood asthma. Consequently, over the past 20 years, numerous efforts have been made to educate children with asthma and their parents in camp programs,’ community agency programs,3~4 residential programs,’,’ and school-based programs.’ Except for the school-based program evaluated by Parcel, Nader, and Tieman,? none of these programs have reported an objective or controlled Neal Whitman and Dee West are at the University of Utah School of Medicine, Department of Family and Community Medicine, Salt Lake City, Utah. Franklin K. Brough and Molly Welch are at the American Lung Association of Utah, Salt Lake City, Utah. This project was supported by the Thrusher Foundation. Address reprint requests to Neal Whitman, EdD, Department of Family and Community Medicine, University of Utah School of Medicine, 50 North Medical Drive, Salt Lake City, Utah 84132. 333

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evaluation of the benefit of the program. Also, no programs have been reported that aimed to educate preschool children. The American Lung Association of Utah, with the cooperation of the Department of Family and Community Medicine at the University of Utah School of Medicine and the Pediatric Cardiopulmonary Laboratory at Primary Children’s Medical Center, conducted and evaluated a self-care rehabilitation program for both preschool and school-age children and their parents. The Self-Care Rehabilitation in Pediatric Asthma (SCRPA) project was designed to ascertain (1) the level to which children with asthma are able to acquire the asthma knowledge and skills presented in a self-management training program conducted by the American Lung Association of Utah and (2) the effect of such training on the asthma experience.

METHODS The SCRPA Curriculum The preschool SCRPA Curriculum (ages 2-5) consisted of six 1-hour classes scheduled twice a week for 3 weeks. The first and last classes were for one or both parents only, and the middle four sessions were for the child and parent(s). The school-age SCRPA Curriculum (ages 6-14) consisted of eight 90-minute classes for both child and parent(s) scheduled twice a week for 4 weeks. The curriculum was designed to present information and skills to allow children to offset the changes in structure and function of the lungs caused by asthma: (1) bronchospasm that narrows the airways, (2) excess mucus secretions that plug the airways, and (3) air trapping behind largely obstructed airways, which leads to overinflation of the lungs and shortness of breath. The program was designed with the assumption that children and parents who are well informed about asthma will manage it more effectively and may even prevent attacks. In addition, the program was designed to help children and their parents cope with the emotional impact of asthma. The self-care classes contained instruction and activities in four skill areas believed to be effective in offsetting the aforementioned deleterious effects of asthma. 1. 2.

Breathing control skills. Three breathing control skills were taught: abdominal breathing, pursed-lip exhalation, and prolonged exhalation. Body relaxation skills. Several methods were taught, including autogenic training for preschool children and the Benson and Jacobson methods for school-age

children. 3. Bronchial hygiene skills. Children and parents were taught several skills to aid in the clearing of excess mucus from airways, including improving the level of hydration by drinking more water and humidifying the airways, chest percussion 1 and postural drainage, and how to perform an effective cough. 4. Physical conditioning. A program of graded physical conditioning was prescribed for each child. For preschool children, the program included &dquo;step up, step down&dquo; and &dquo;jumping ball&dquo; exercises, and, for school-age children, the program included a variety of exercises and jogging. For all children, goals were set for home performance with increasing periods of exercise within the child’s ability. The

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exercise

-

5.

designed to emphasize breathing so that children could recognize early warning signs of breathing distress, initiate self-management measures, and, thus, gain confidence in self-reliance. Additional topics: In addition, the class curriculum included dissemination of information on respiratory anatomy, physiology, and the pathophysiology of asthma, education on types of asthma medications, and, for the school-age children, class sessions on recognition of asthma triggers and warning symptoms and the emotional/psychological effects of asthma. The SUPERSTUFF module, developed by the American Lung Association, was used with the school-age group. was

Subjects Beginning in March, 1983, allergists, pediatricians, family physicians, and general practitioners in Utah, Salt Lake, Davis, and Weber counties were contacted for referrals, and presentations were made at Primary Children’s Medical Center and University of Utah Medical Center Grand Rounds. The subjects for the study were 21 preschool children and 38 school-age children (19 in the study group and 19 in the control group) referred by their private physicians. The preschool group members were 71% male with

a mean age of 3.6 years. Their age range was 2-5 years. The schoolage study group children were 67% male with a mean age of 8.4 years. Their age range was 6-14 years. The school-age control group children were 63% male with a mean age of 8.9 years. Their age range was 6-13 years.

Study Design The study was designed so that base line data could be collected on all subjects prior to training, during training, and after training. Initially, families completed an Asthma and Family History Survey. They then completed asthma episode summaries and weekly asthma logs for 3 months prior to training, during the month of training, and for 3 months after the training. The asthma episode summaries asked for a description of each asthma episode as it occurred, including time of day, length of episode, location of child, use of medication, etc. The weekly asthma logs asked for the parental impression of the child’s asthma condition for each day of the week-none, mild, moderate, or severe-and whether any activities were missed by the child because of asthma, e.g., school, sports. The preschool children were not matched with a control group because of the length of the study (3 months of pretraining data collection, I month of training, and 3 months of posttraining data collection). For ethical reasons, it was deemed undesirable to delay training for 7 months in a population of 2-5-year-olds. Thus, preschool children in the study served as their own control group with pre- and posttraining comparisons. The school-age children were matched with a control group. Children were paired and randomly assigned to the study or control group. Children were matched by the following criteria: 1. Sex: male or female. 2. Age group: 6-9, 10-12, 13-14.

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3. Severity of disease: mild, moderate, or severe. 4. Season of worst asthma: winter, spring, summer,

or

fall.

At the end of the study period, the control group was provided the training program. The school-age children were assigned to the study or control group after an orientation meeting with parents who were told that for the sake of our study some children would begin training later than others.

Instruments

multiple-choice asthma knowledge test was administered to schoolbeginning and end of the training program and again 3 months later. In addition, for the school-age children, the Children’s Health Locus of Control developed by Parcel (used with permission) and for the parents of school-age children the Parents Asthma Attitude Scale developed by Creer (used with permission) were administered at the same times as the asthma knowledge test. The matched control group of school-age children and their parents completed the asthma knowledge and A written 10-item age children at the

attitude tests at the same times as the study group. In addition, the performance of the four skills described in the SCRPA curriculum was tested in the school-age study and control groups. Skill testing was conducted at the times of knowledge and attitude testing, and an observer used a self-care performance checklist to assess each child individually. The knowledge and attitude tests were administered by the SCRPA instructor, and the skill tests by observers trained in the use of the checklist.

RESULTS

Preschool Children their base line data, 20% of these children had an asthma episode at at least once a month. Their most common asthma trigger was respiratory illness, reported by 90%. Other frequent triggers included allergies, exercise, emotions, weather, and airway irritants. A comparison of asthma episodes during the 3 months before and after training shows a statistically significant decrease in the number of episodes (Table 1 ): an average of 10.10 asthma episodes per person in the 3 months prior to training compared to an average of 5.14 episodes in the 3 months afterwards. However, generally, there was no change in the severity of the asthma attacks, although there was a statistically, but not clinically, significant decrease in the mean number of severe asthma days: an average of 1.76 days in the 3 months prior to training compared to 0.81 days in the 3 months afterwards.

According

least

once a

to

week, 75%

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Table I . Number of Asthma Episodes and Controls Beforc and After Intervention

Severity

of

Episodes

among

Study Subjects

and

&dquo;paired test.

bPaired

t test.

School-Age

Children

of asthma episodes 3 months before and after training in the study group shows a decrease in the average number of episodes but no change in severity of asthma (Table 1). A comparison of asthma episodes in the control group also shows a decrease in the average number of episodes and an increase in the number of days without asthma. A comparison of the study group and control group shows that their difference in means before and after intervention are not significant (Table 2). In other words, both groups had fewer episodes in the posttraining period, and the control group fared as well as the study group. With regard to knowledge, attitude, and skill testing, the study group significantly increased knowledge and skills at the end of training, a change maintained 3 months later (Table 3). In particular, the skill changes were meaningful: based on the 16-point test of four asthma skills, the mean score of 0.89 changed to 15.00 at the end of training and was still 13.95 3 months later. On the other hand, there was no significant change in attitude tests for children or parents in the study group. With regard to the control group, there were no meaningful changes in knowledge, attitude, or skill. A

comparison

..

338

339

340

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DISCUSSION

Concepts of self-management in pediatric asthma have received public attention during the past 10 years. It has been observed that parents of preschool children with asthma frequently express an urgency to enroll in asthma rehabilitation programs. This may be because of the relative recency of the disease onset and lack of other asthma contacts to provide the family with asthma experience. In fact, in the preschool group enrolled in the SCRPA, 70% of the families had no association with anyone else with asthma in or out of the home. Based on the study results, it was found that preschool families benefited by a reduction in the number of asthma days or episodes but not in their severity. Other benefits included a reduction in emergency visits to physicians and hospitals. A limitation of the preschool study is the lack of a matched control group. An understanding of these results is facilitated by looking at the school-age study, which did have a control group. The change in asthma days in the study group was not significant compared to the change made by the control group, although both groups reduced asthma days. Thus, one may conclude that participation in the study was as effective in reducing asthma days as was training per se. Both the control and study groups participated in daily records of asthma episodes and weekly assessments of asthma for 7 months as well as having completed an extensive asthma and family history at the start of the study. The study group, however, made knowledge and skill gains not found in the matched control group. It is not clear what impact these gains had or will have on the asthma experience. With regard to attitude change, neither instrument to measure it in children or their parents showed any impact. One explanation is that the base-line attitudes were positive and remained so. The possible range on the Children’s Locus of Control Test was 20 to 40, and the study and control groups began at 33.79 and 33.74, respectively. The possible range on the Parent’s Asthma Attitude Test was 0-96, and the study and control groups began at 79.74 and 80.37, respectively.

CONCLUSIONS This

study, as far as we know, is the first report and evaluation of a program for preschool children. The absence of a control group for this group limits the generalizability of the findings, as does the small sample size for this group and the schoolage groups. Nevertheless, there are some general conclusions that seem important for those concerned with asthma treatment. The SCRPA project demonstrates some effects on the asthma experience, particularly in reduction of the number of asthma days. Since similar reductions were seen in the control group, this suggests that family record keeping and general involvement in asthma monitoring may be important in reducing asthma attacks. The limited sample size suggests a need to test further the impact of family record keeping on the asthma experience. The SCRPA project also demonstrates that children can dramatically increase their knowledge and self-management skills in a training program. More research is needed to determine exactly what impact these have on the asthma experience.

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References 1. Scherr MS: Camp Bronco Junction: Second year of experience. Ann Allergy 28:423-433, 1970. 2. Scherr MS: Role of summer camp in rehabilitation of the asthmatic patient. Rev Allergy 22:169-175, 1968. 3. Blumenthal MN. Cushing RT. Fashingbauer TJ: A community program for the management of bronchial asthma. Ann Allergy 30:391-398, 1972. 4. Tuberculosis and Health Association of Hennepin County: Physical conditioning program for asthmatic children. J Sch Health 37:107-11 I , 1967. 5. Falliers CJ: Treatment of asthma in a residential center: A fifteen year study. Ann Allergy 28:513-521, 1970. 6. Muscia AV: The role of a residential center in the case of the asthmatic child. Ann Allergy 22:191-195, 1964. 7. Parcel GS, Nader PR, Tiernan K: A health education program for children with asthma. Unpublished report of Department of Pediatrics, The University of Texas Medical Branch at Galveston, funded by a grant from the Robert Wood Johnson Foundation.