Proc. 12th Eur. Conf. Psychosom. Res., Bod$ 1978 Psychother. Psychosom. 32: 270-278(1979)

Self-Management Training for Children with Chronic Bronchial Asthma1 Thomas L. Creer and Kenton L. Burns National Asthma Center, Denver, Colo.

Abstract. We have described examples of behaviors that occur antecedent to, concur­ rent with, or as a consequence of childhood asthma. Ways these patterns can be altered have also been described. Three points should be emphasized: first, social learning techniques can contribute to a child acquiring self-monitoring and self-management skills over his or her affliction. Thus, youngsters with asthma can learn self-responsibility over their affliction. Second, while we do have follow-up data indicating that youngsters continue to perform similar behaviors once they leave the Center and return to their families, such generalization does not automatically occur. For this reason, we have initiated several programs for work­ ing with a child’s family. Finally, what about the youngster who is never admitted to an asthma facility such as the National Asthma Center? It is here where we are beginning to focus most of our efforts. By teaching a child and his or her family ways that the youngster can learn to manage asthma means that the disease will become less of a disruptive influence within the home, that costs of the affliction can be contained, and that the youngster can remain within the mainstream of both his or her family and community. Future reports from the Center will describe efforts we are making in this direction.

1 The preparation of the manuscript was supported in part by Contract NOl-HR-72972 from the National Institute of Heart, Lung and Blood.

Downloaded by: Karolinska Institutet, University Library 130.237.122.245 - 1/24/2019 8:54:43 PM

For a number of years, the staff of the Division of Behavioral Science at the National Asthma Center has been applying behavioral techniques to rehabilitate children with chronic bronchial asthma (Creer et al., 1976; Creer and Christian, 1976). During the time they are in residence at the Center - the average stay was 325 days in 1977 — youngsters are provided with the most up-to-date medical treatment, and a living environment designed to enhance their psycho­ social development. The basic goal is to return the child to his home community medically stabilized and behaviorally capable of leading a normal lifestyle. An

Self-Management Training for Children with Chronic Bronchial Asthma

271

important aspect of this goal is the child’s knowledge of, and ability to manage, his or her affliction. Self-management is stressed for children because they must learn to accept responsibility for their health when they return to their homes and families. From the research and experience gained from working with residents at the Center over the years, we have developed a self-management program for all children with asthma. The program’s aim is to increase and enhance self-respon­ sibility to the point of reducing the frequency and severity of attacks, as well as the number of acute medical crises experienced by these youngsters. Patients are generally referred by their physician; it is assumed that children in residence receive the best medical treatment available. Thus, any gains in symptom im­ provement shown by youngsters following their discharge reflects both the medi­ cal attention they have received and their acquired skills in the self-management of asthma. Our training and intervention efforts derived from an analysis of the behav­ ioral and environmental factors surrounding the asthmatic child. These can be categorized into events occurring antecedent to, concurrent with, or as a conse­ quence of asthma. The bulk of the present paper is devoted to a description of the features of this analysis as they are used to teach patients skills in managing these events.

Antecedent Conditions

Presenting Problem Non-compliance to prescribed medication regimens is widespread among patients with asthma. A recent report by Eney and Goldstein (1976) confirmed clinical impressions which attest that patients with asthma do not comply with medication instructions very well. These investigators analyzed serum and sali­ vary theophylline levels to determine whether a group of children with asthma were taking medications as prescribed. Their results were bleak: in a group of 43 randomly selected patients, 10 patients (23%) showed no detectable levels of theophylline, indicating that none of the medication had been taken as directed; 28 (65%) had values below the accepted therapeutic level, but did have measur­

Downloaded by: Karolinska Institutet, University Library 130.237.122.245 - 1/24/2019 8:54:43 PM

These are defined as those behaviors or events that occur prior to the onset of an asthma attack (Creer, in press). An important antecedent condition —medi­ cation compliance — has been singled out as an illustration of an antecedent conditions.

Creer / B u m s

272

able theophylline, indicating that at least some portion of the prescribed dose had been taken. Only 5 of the patients (11%) achieved therapeutic levels. Thus, 88% of the group were not taking their medications as instructed. Findings similar to these were more recently presented by Kudlec (1978).

Changing the Behavior The strategy taken at the Center is to teach patients to assume responsibility for their own medication. This entails teaching each patient skills in self-moni­ toring and self-control. Exactly how this is achieved can be illustrated by de­ scribing one of several programs developed and applied with asthmatic children.

Downloaded by: Karolinska Institutet, University Library 130.237.122.245 - 1/24/2019 8:54:43 PM

Analysis o f the Behavior Over the years, we have attempted to pinpoint why patients with asthma display such a lack of compliance in taking prescribed medications. Creer (in press) describes factors presented by patients and their parents as reasons why there is a lack of compliance to asthma medications. These factors include: (1) Taste. Children claim they are non-compliant because of what they regard as the vile taste of their medications. (2) Expense. Many parents report that the lack of compliance is due to what is frequently the high cost of medications. (3) Schedule. The schedule on which medications are to be taken by the patient is often inconvenient and difficult to follow. (4) Age. Age is a factor in medication compliance especially among young adolescents, who sometimes ditch medications in order to test whether or not they actually require these substances. (5) Beliefs. The beliefs and attitudes maintained by a patient and/or mem­ bers of his or her family can affect whether or not he or she will comply with medication instructions. (6) Characteristics o f asthma. Diseases which are asymptomatic, such as asthma, promote non-compliance. (7) Improper instruction. Many children and their parents report they were never properly instructed on how to take medications properly, especially those substances which are inhaled. (8) Social stigma. Many patients and/or members of their families claim there are social barriers that keep them from complying. (9) Side effects. The side-effects of many medications lead patients to shy away from them. (10) Indifference. Many patients are simply indifferent when it comes to complying with medication instructions.

Self-Management Training for Children with Chronic Bronchial Asthma

273

Parker and Renne (1976) devised a three-stage intervention package for an adolescent girl who had returned to the Center after a brief stay with her family. Medical personnel thought that the youngster’s deteriorating health was due to a lack of compliance with medication instruction while she was at home. The three stages were followed sequentially: Stage 1. Here, the girl reported to a counselor or child care worker when­ ever it was time to take her maintenance medications. The counselor marked a data sheet to signify when the girl took her medications. Stage 2. During this period, the girl continued reporting to the counselor at prescribed times; however, the youngster now retained the data sheet and medi­ cations in her own possession. The counsellor made checks on what amounted to a variable interval schedule to ensure that the girl adhered to instructions. Stage 3. The youngster retained control of both the data sheet and her medications during the final stage of the program. She no longer reported to the counselor, although the latter continued making checks on a variable interval schedule to ascertain that the physician’s instructions were being followed. Results indicated that the three-step program was successful in transferring responsibility for taking medications from the medical staff to the girl. Shortly thereafter, she was discharged from the Center to return to her home. Programs incorporating many of the same features have also been applied at the Center by Parker et al. (1976) and Burns (1977). Our experiences at the Center indicate that self-monitoring and self-manage­ ment of medications has been well-received by both children and staff members. It seemingly has eliminated many of the abuses formerly observed, such as ditching medications or not reporting to the hospital on time to receive these prescribed drugs. At the same time, there are suggestions that the child’s accept­ ance of responsibility for medications does generalize to the home environment once a child is discharged from the Center.

Concurrent conditions are defined as those conditions present during an asthma attack (Creer, in press). These conditions or events serve to interact with the physical characteristics of the attack, either permitting control to be established over the attack or exacerbating the asthma suffered by the patient. Symptom discrimination has been selected as an example of a concurrent con­ dition.

Downloaded by: Karolinska Institutet, University Library 130.237.122.245 - 1/24/2019 8:54:43 PM

Concurrent Conditions

Creer / B u m s

274

Analysis o f the Behavior Learning factors play key roles in symptom discrimination (Creer, in press). Through a respondent conditioning paradigm, many people undoubtedly asso­ ciate certain subjective feelings with previous attacks of asthma. Thus, when these feelings again occur, they sense they are beginning to experience the onset of asthma. In a number of cases, these private feelings or events are, no doubt, associated with actual attacks; the patient’s own feedback can, in such cases, assist him to obtain prompt treatment for the attack. In other instances, how­ ever, the original pairing of the subjective feelings or states and a particular attack, usually severe, may give rise to something akin to one-trial learning: there­ after, any feelings similar to those that occurred during this attack are inter­ preted by the patient as foretelling an asthma attack. As was demonstrated a quarter of a century ago by Solomon and Wynne (1953), avoidance learning can be particularly resistant to extinction. Other social learning principles are important in determining whether re­ ports of subjective feelings correspond with objective indices of the condition. Two types of cases illustrate the importance of operant conditioning in influ­ encing the type of verbal report provided by a patient with asthma. First, a child

Downloaded by: Karolinska Institutet, University Library 130.237.122.245 - 1/24/2019 8:54:43 PM

Presenting Problem How rapidly the patient recognizes he or she is suffering the onset of an asthma episode can be extremely important in the management of a patient. Symptom discrimination is important for two reasons: first, the attacks of some patients can intensify rapidly. Thus, instead of treating a mild attack, the physi­ cian and other members of the attending staff may be forced to deal, within a brief period of time, with status asthmaticus or steadily worsening asthma. With patients who show a tendency towards a short latency period between the onset of asthma and status asthmaticus, symptom discrimination becomes of para­ mount importance. A second reason promoting the importance of symptom discrimination is the reported lack of correlation in many patients between verbal reports of asthma and objective indices of the condition (Chai et al., 1968;Rubinfeld and Pain, 1976). In other words, a person may report he is experiencing the symp­ toms of asthma when objective measures of his pulmonary functioning indicate he is symptom-free. The obverse can also be true. In the study by Rubinfeld and Pain, for example, 15% of their patient population was unable to sense the presence of marked airways obstruction when FEVj tests showed they could exhale less than 50% of their predicted normal values! Under these circum­ stances, training in symptom discrimination is obviously necessary.

Self-Management Training for Children with Chronic Bronchial Asthma

275

may report to the hospital at the Center, complaining that he is wheezing, tight, or experiencing another of the symptoms of asthma. An examination of this patient, however, may yield no findings to corroborate his reports. It is only later that a behavioral analysis of the incident reveals that the child was hopeful of avoiding a test at school, some sort of altercation with youngsters in his cottage, etc. On the other hand, a youngster may report he is ‘feeling fine’, even though he is noticeably wheezing, gasping for breath or displaying other symp­ toms of asthma. In these instances, it may turn out that the child wished to attend a movie or to participate in some other reinforcing event. Changing the Behavior There has recently been a surge of interest in teaching patients with asthma to discriminate the symptoms of their affliction. For example, several studies have described the use of classical psychophysical techniques where patients were asked to report on just noticeable tightness in their chests (Rubinfeld and Pain, 1977a, b; Gottfried et al., 1978). The results of these investigations indicate that patients can learn to discriminate slight changes in their respiratory functioning that are congruent with findings concurrently observed by sophisti­ cated respiratory instrumentation. A slightly different tactic was taken by Renne et al. (1976). Children were provided with portable peak flow meters and asked to record the values they thought they could blow at different times of the day. The emphasis was more on a reinforcement paradigm (although it can be assumed that feedback to the patients about their performance constituted reinforcement in the studies using psychophysical methods) in that the youngsters were told that they would be given script exchangeable for gifts or the opportunity to chart their own progress as their estimates of their pulmonary functioning came to approximate pulmon­ ary physiology data obtained by the experimenters. Again, success was reported in teaching patients to discriminate changes in their pulmonary performance. A prototype approach in teaching symptom discrimination involves many of the steps outlined by Renne and his colleagues. Such an approach is described by Creer (in press).

Any number of behavioral consequences can occur because a person suffers an affliction such as asthma. Rather than catalogue all the possible conse­ quences that can occur, we will describe one type of behavioral outcome we have observed in children at the Center —malingering.

Downloaded by: Karolinska Institutet, University Library 130.237.122.245 - 1/24/2019 8:54:43 PM

Behavioral Consequences

Creer / B u m s

276

Presenting Problem Once admitted, some patients appear to make an effort to remain confined to the hospital; elsewhere, this pattern has been referred to as malingering (Creer, 1970; Creer et al., 1974). There are a number of approaches a patient can take to achieve this aim. Creer (1970), for example, reported on two cases at the Center; Jack and Don. Jack frequently indicated that he was experiencing stomach pains, usually after hearing that he was about to be discharged from the Center’s hospital because his asthma had abated. This invariably sparked a series of examinations and tests, all of which postponed Jack’s release from the hospi­ tal. Under similar circumstances, Don complained of vague chest pains. His comments always induced a complete mobilization of the medical staff since he had a past history that included at least two cardiac arrests. After several episodes where the complaints of Jack and Don had been unverified and after observing that both youngsters were spending an inordinate amount of time in the hospital, the medical staff at the Center was perplexed as to how they could manage the boys. While they were convinced that the pair malingered, they were reluctant to completely ignore the youngsters’ complaints for fear that these reports might, at some future time, prove valid. It was at this time that a behavioral analysis was initiated.

Changing the Behavior Baseline data on the duration and frequency of hospitalizations were gather­ ed for Jack and Don over a period of 6 weeks. Intervention then commenced by asking members of the nursing staff to adhere to the following instructions whenever either child was admitted to the hospital:

Downloaded by: Karolinska Institutet, University Library 130.237.122.245 - 1/24/2019 8:54:43 PM

Analysis o f Behavior It was not difficult to find factors affecting Jack and Don’s behavior outside of the hospital: both were poor students and in danger of failing a grade, in part because of their high absenteeism records. Don was also in constant hot water in his cottage; he always seemed to be involved in arguments or altercations with both the other youngsters and members of the hospital care staff. The latter two variables, however, appeared less of a factor than his poor academic perfor­ mance. It also did not prove to be an arduous undertaking to determine what variables in the hospital environment were possibly promoting malingering on the part of Jack and Don. The youngsters had access to a gamut of potential reinforcers, ranging from viewing television to reading comic books, and from resting in bed to visiting the other youngsters admitted to the facility.

Self-Management Training for Children with Chronic Bronchial Asthma

277

(1) Each boy should be placed in a room by himself. (2) Neither youngster could receive visitors other than medical or nursing personnel. (3) Neither youngster was allowed to visit with other children while ad­ mitted. (4) Comic books and television sets were prohibited, although the boys could read books related to their school work. (5) Each child was allowed to leave his room only to go to the restroom. This also meant that the youngsters ate all their meals in their rooms by them­ selves. These instructions were followed by the nursing staff for a period of 6 weeks. In order to determine that the instructions were indeed altering malingering, a reversal period was introduced. Essentially, this consisted of rescinding the instructions provided the nurses and permitting them to manage Jack and Don in a manner identical to that used with other youngsters. The intent was to have the reversal period also last 6 weeks; however, because of the demands of the nursing staff, this period was cut by half. The final phase of intervention saw the reinstatement of the instruction for a period of 8 weeks, a point that coincided with the termination of the academic year. The procedure applied to Jack and Don is referred to as time-out from positive reinforcement in that the instructions imposed by the nursing staff curtailed possible positive reinforcers for the malingering. Don and Jack spent 67% and 55% of their time, respectively, in the hospital during baseline. With introduction of the time-out procedure, however, the amount of time spent in the hospital decreased to 19% for Don and 7% for Jack. Instituting the reversal brought renewed attendance in the hospital for both boys: the percentage of time in this setting rose to 38% for Don and 24% for Jack, convincingly demonstrating that reinforcers were maintaining the malingering. The trend was inverted again, however, with reinstatement of the time-out instructions. Thus, during the final phase of the program, Don spend 7% of his time in the hospital, while Jack was hospitalized for only 5% of his time.

Burns, K.L.: Unpublished data, National Asthma Center (1977). Chai, H.; Purcell, K.; Brady, K., and Kalliers, C.S.: Therapeutic and investigational evalu­ ation of asthmatic children. J. Allergy 41: 23-36 (1968).

Downloaded by: Karolinska Institutet, University Library 130.237.122.245 - 1/24/2019 8:54:43 PM

References

Creer / Bums

278

Thomas L. Creer, National Asthma Center, Denver, Colorado (USA)

Downloaded by: Karolinska Institutet, University Library 130.237.122.245 - 1/24/2019 8:54:43 PM

Creer, T.L.: The use of time-out from positive reinforcement procedure with asthmatic chil­ dren. J. Psychosom. Res. 14: 117-120(1970). Creer, T.L.: Asthma therapy: A behavioral health care system for respiratory disorders (Springer Publishing, New York, N.Y., in press). Creer, T.L.; Weinberg, E., and Molk, L.: Managing a problem hospital behavior: Malingering. J. Behav. Ther. exp. Psychiat. 5: 259-262 (1974). Creer, T.L. and Christian, W.P.: Chronically-ill and handicapped children: their management and rehabilitation (Research Press, Champaign, 111. 1976). Creer, T.L.; Renne, C.M., and Christine, W.P.: Behavioral contributions to rehabilitation and childhood asthma. Rehabil. Lit. 37: 226-247 (1976). Eney, R.D. and Goldstein, E.O.: Compliance of chronic asthmatics with oral administration of theophylline as measured by serum and salivary levels. Pediatrics 57: 513-517 (1976). Gottfried, S.B.; Altose, M.D.; Kelson, S.G.; Fogarty, C.M., and Cherniak, N.S.: The percep­ tions of changes in air flow resistance in normal subjects and patients with chronic obstruction. Chest 73: 286-288 (1978). Kudlec, G.J.: Noncompliance of asthmatic children: a study of theophylline levels in a pediatric emergency room population. Paper presented at the 34th Scientific Congress, American College of Allergists, Las Vegas, Nevada, April 1-6 (1978). Parker, R.; Parker, L., and Christian, W.P.: Unpublished data, National Asthma Center (1976). Parker, L. and Renne, C.M.: Unpublished data, National Asthma Center (1976). Renne, C.M.; Nau, E.; Dietiker, K.E., and Lyon, R.: Latency in seeking asthma treatment as a function of achieving successively higher flow rate criteria. Paper presented at the Tenth Annual Convention of The Association for the Advancement of Behavior, New York, December (1976). Rubinfeld, A.R. and Pain, M.C.F.: Perception of asthma. Lancet April 26, 882-884 (1976). Rubinfeld, A.R. and Pain, M.D.F.: Conscious perception of bronchospasm as a protective phenomenon in asthma. Chest 72: 154-158 (1977a) Rubinfeld, A.R. and Pain, M.D.F.: Bronchial provocation in the study of sensations associ­ ated with disordered breathing. Clin. Sci. mol. Med. 52: 423-428 (1977b). Solomon, R.L. and Wynne, L.L.: Traumatic avoidance learning: acquisition in normal dogs. Psychol. Monogr. 67: No. 354 (1953).

Self-management training for children with chronic bronchial asthma.

Proc. 12th Eur. Conf. Psychosom. Res., Bod$ 1978 Psychother. Psychosom. 32: 270-278(1979) Self-Management Training for Children with Chronic Bronchia...
734KB Sizes 0 Downloads 0 Views