Motivating children and adolescents to improve adherence

Abstract

Pediatricians and their colleagues often have considerable difficulty in understanding and managing poor adherence. It is hard to comprehend why children with life-threatening illnesses do not adhere to their treatment regimens and even more difficult to comprehend why their parents do not provide optimal care. Yet, clinical experience indicates that in chronic illness such as cystic fibrosis (CF), epilepsy, asthma, or diabetes, poor adherence is the norm. The general response of clinicians and parents to poor adherence is to coerce. This tends to have the opposite effect to that intended.The focus of this paper is on motivational enhancement therapy in children and adolescents with chronic illness to improve adherence to treatment.Treatment overviewThere are multiple components to the treatment of poor adherence.1.D'Angelo S. Lask B. Approaches to problems of adherence.in: Bluebond-Langner M. Lask B. Angst D. Psychosocial aspects of cystic fibrosis. Arnold, London2001: 361-379Google Scholar These include (1) the use of a comprehensive approach, which pays due attention to biological, social, and psychological factors. Since adherence is influenced by many factors, no one method of intervention can sustain it (Barbero G. Personal communication); (2) the creation of a therapeutic alliance, in which there is collaboration between the child, parents, and clinicians. The aim is to move away from the outdated concept of “compliance,” with its implication that patients should do what the doctor tells them. Instead, the clinician moves toward “concordance”–an agreement reached after discussion between the patient and others that respects the patient's beliefs and wishes in determining whether, when, and how treatment is to be taken.2.Dickinson D. Wilkie P. Harris M. Taking medicines: concordance is not compliance.BMJ. 1999; 319: 787Crossref PubMed Google Scholar In other words, patients should become participants in, not just recipients of, their health care; (3) working with the child and parents: It is as inappropriate to neglect the parents in such situations as it is to neglect the child. They can play a major part in helping their child to improve adherence; and (4) adoption of a warm, empathic, and nonjudgmental approach, avoiding blaming, harassment, and coercion. This approach, the antithesis of how poor adherence is often tackled, informs motivational enhancement therapy, which is the focus of the rest of this paper.Motivational enhancement therapyBackgroundMotivational enhancement therapy (MET) is based on the principle that coercion and harassment rarely change behavior but tend rather to reinforce it. Therefore, when children or adolescents with chronic illness are adhering poorly to their treatment regimen, it is counterproductive to criticise or blame them. A useful analogy is that of trying to stop an adolescent from smoking. Although adolescent smokers know all about the health risks, the expense of their habit, and all the other disadvantages, they continue to smoke. Attempts to convince them of the errors of their ways invariably fail. If education worked, there would be no adolescent smokers. In fact, we probably have more antismoking education than at any other time and more adolescent smokers than at any other time! Those who adhere poorly to their treatment regimen are like many smokers or users of other harmful substances; they know all about the health risks but they lack the motivation to change.MET focuses on enhancing motivation to change, so that other treatments become more effective. It has been applied successfully in a number of different pediatric contexts including smoking,3.Colby S. Monti P. Barnett N. Rohsenow D. Weissman K. Spirito A. et al.Brief motivational interviewing in a hospital setting for adolescent's smoking: a preliminary study.J Consul Clin Psychology. 1998; 66: 574-578Crossref PubMed Scopus (273) Google Scholar drug abuse,4.Monti P. Colby S. Barnett N. Spirito A. Rohsenhow D. Myers M. et al.Brief intervention for harm reduction with alcohol positive older adolescents in a hospital emergency department.J Consult Clin Psychology. 1999; 67: 989-994Crossref PubMed Scopus (619) Google Scholar and eating disorders,5.Gusella J. Butler G. Nicols L. Bird D. A brief questionnaire to assess readiness to change in adolescents with eating disorders: its application to group therapy.Eur Eating Disord Rev. 2003; 11: 58-71Crossref Scopus (50) Google Scholar in each of which there is commonly a resistance to treatment.This paper describes the application of motivational techniques for chronic illness in childhood and adolescence.Assessment of motivationThe assessment of motivation is based on five stages of readiness to change6.Procheska J. Diclemente C. Norcross J. In search of how people change: applications to the addictive behaviors.Am Psychologist. 1992; 47: 1102-1114Crossref PubMed Scopus (6388) Google Scholar: (1) precontemplation, in which there is a denial of any problem with adherence or of any need to change; (2) contemplation, in which there is acknowledgement of a problem with adherence but denial of any need to change; (3) preparation, in which there is acknowledgement of a problem with adherence and of a need to change but unwillingness to change at present; (4) action, in which there is acknowledgement of a problem with adherence and of a need to change and willingness to attempt to do so; and (5) maintenance, in which adherence is improving, but help is requested to maintain the changes.These stages of readiness to change (or motivation), although described as if they are categories, are in fact placed along a continuum, with considerable overlap between them. Patients tend to fluctuate between the stages, and MET aims to help patients move forward along the continuum to the stages of “action” and then to “maintenance.”Characteristics of METMET is a nonjudgmental approach characterized by warmth, respect, and empathy, all common to clinical practice, generally, but also characterized by curiosity, humility, low investment, and flexibility. Curiosity is expressed by a sincere interest in the patient's view of the situation and most particularly in what the patient perceives as the advantages and disadvantages of the poor adherence. Humility is manifested by the eagerness to learn more about the patient's perspective, which is in contrast to the more traditional attitude of “doctor knows best.” Low investment involves the clinician exploring, accepting, and trying to understand the patient's view rather than making active and overt attempts to change the patient's attitudes and behavior. There is an acceptance that enhancing motivation takes time and occurs, not through coercion or education, but by helping the patient focus on the reasons for poor adherence.Techniques of META number of techniques inform the practice of MET: the use of open-ended questions, reflective listening, double-sided reflections, eliciting advantages and disadvantages, draining, affirmation, summarizing, and transfer.Open-ended questionsThere is commonly a tendency to ask “closed” questions, for example, those that require a “yes” or “no” response. Examples of closed questions include “do you always take your medication?” or “do you realize that you are harming yourself by not taking your medication?” Such questions are likely to put the child on the defensive and are unlikely to elicit useful information. Open questions are more useful; for example, “Most people with CF miss some of their treatment because there is so much to take; I wonder how often that happens to you?” or “when people with diabetes don't stick to their diet, they sometimes worry that they may be harming themselves: I wonder how often you have that worry?”Reflecting listeningThis involves reflecting back what the child has said, for example, If the child says “I hate the taste of the medicine,” the reflection back could be “So one of the reasons for not taking the medicine is because it tastes horrible.” Although this may sound superficial and unnecessary, it conveys to children that they have been heard and understood rather than criticized and blamed and therefore accepted.Double-sided reflectionsThese are similar to “reflecting back” but incorporate the child's ambivalence or uncertainty. For example, the child might say “I don't want to do my physiotherapy but then my mum gets really mad with me.” The double-sided reflection could be “so on the one hand the physiotherapy is a pain, but on the other hand if you don't do it your mum is a pain.” Again, this shows that the child has been heard, understood, and accepted and that the confusion and uncertainty has been recognized as a problem.Eliciting the advantages and disadvantages of poor adherenceThe rationale for this is that usually the patient who is adhering poorly to treatment perceives the advantages of poor adherence to outweigh the disadvantages. For example, in poor adherence to chest physiotherapy for CF, the patient may say that while doing the physiotherapy may apparently be helpful in the long run, it doesn't feel so at the time, and it is boring, intrusive, time-consuming, exhausting, and causes coughing. The patient may feel that having to do this 2 or 3 times a day indefinitely simply does not justify the effort and discomfort; the perceived disadvantages clearly outweigh any perceived advantages. The clinician may have a different perception, but that is irrelevant in MET; it is the patient's perceptions that matter, for it is these that impair motivation to adhere to the treatment program.DrainingThis technique is central to MET and involves a very detailed exploration of the perceived advantages of poor adherence. Such perceptions play a major part in its perpetuation. Pursuing the example given above, the child has said that chest physiotherapy is boring, intrusive, time-consuming, exhausting, and causes coughing. Draining entails painstaking examination of each of these. The clinician asks the child to say more about how boring it is, to describe the scene and the associated sense of boredom, how long it lasts, and what is done to attempt to alleviate the boredom. The clinician continues to explore the details until the child is “drained” of everything there is to say about it. Even then, the clinician asks if there is anything else to be said about how boring it is. Then, the same process is repeated with regard to the sense of intrusion and all the other perceived advantages of poor adherence. When the list is complete, the clinician asks if there are any other advantages to not doing the physiotherapy and if the child does offer more these are explored in the same way.If this technique is conducted skilfully and sympathetically, very frequently the child wants to begin to discuss the disadvantages. This is initially discouraged, as the aim is to establish the nature and strength of the factors that maintain poor adherence. Also, avoidance of such discussion paradoxically serves to intensify the child's wish to explore the disadvantages. The skilled motivational therapist resists this until much later.AffirmationThis is a nonjudgmental and empathic acceptance of the child's views. For example, the clinician may respond to a child's statement that “there is no point in doing all the treatment because I am never going to get better anyhow” by saying “it's not surprising that you feel there is no point; you can't see yourself getting any better and I guess that must be quite depressing for you.” Having the validity of one's feelings affirmed is supportive and often the first step to change.SummarizingEvery few minutes, the clinician makes a point of summarizing what the child has said so far. For example “so if I have understood you correctly, you don't like doing all the treatment because it is boring, stops you being with your friends, makes you feel different from others, causes you to cough, and exhausts you. On the other hand, if you don't do it, you sometimes feel worse and your parents get upset with you. That is quite a dilemma.” The child feels heard, understood, and accepted and has a chance to consider with a neutral outsider a complex and emotionally fraught set of experiences.Exploring the disadvantages of poor adherenceIt is best to avoid doing this until the child is clearly ready, as demonstrated by his or her repeated attempts to do so. It is very rare for children to want or be able to do so when in the stage of precontemplation. Imposing such discussion prematurely is counterproductive. Gentle discussion may commence once in contemplation, but only following the child's lead. The same techniques as outlined above, with the exception of draining, are used in the same way. If the child returns to discussing the perceived advantages of poor adherence, this should be respected and supported. As there is progression through the stages of change, there is increasing discussion of the disadvantages. Around the stage of preparation, it can be helpful if the child draws up a list of advantages and disadvantages, which can then be discussed at the child's pace. In the stages of action and maintenance, there is likely to be increasing focus on the difficulties in adhering as well as on the advantages and disadvantages.The focus differs depending on the stage of readinessAs can be seen from above, the focus is to some extent determined by the stage of readiness to change. Generally, the focus in precontemplation and contemplation is on the perceived advantages of poor adherence; in preparation, there is more focus on the balance between the perceived advantages and disadvantages; in action and maintenance, the advantages of adherence take central stage.Working with parentsMET is a technique that can be used before, after, or in tandem with other approaches. As stated earlier, the approach to the assessment and management of poor adherence should be comprehensive. For example, although the focus is on the child, it helps to involve the parents as much as possible. They need to know about and understand the principles of the motivational approach so that they can support and participate in it. If the parents adopt a more pressurising stance, the value of attempting to enhance motivation will be lost. The use of parental counseling or family therapy in tandem with MET is therefore a useful adjunct.How does MET work?MET works in a number of ways. First, it breaks the vicious cycle of poor adherence, creating parent or clinician anxiety, which in turn leads to coercion, the effect of which can be to intensify the poor adherence. If coercion worked, there would be no poor adherence! Second, it gives the child a sense of control and autonomy, which is often lacking in chronic illness. Third, it gives the child a chance to consider, in a noncoercive context, the advantages and disadvantages of adhering to the treatment regimen and consequently to modify behavior. Finally, it is adaptable to each child's specific circumstances and stage of readiness to change.Who should use MET?The principles of MET are applicable in any pediatric condition in which poor adherence is a problem. For example, it is helpful for the pediatrician to seek a sympathetic understanding of the child's position rather than spend time coercing. The use of open-ended questions, curiosity, and reflective listening and summarizing should add no time to a conventional interview. If necessary, the more complex and time-consuming techniques such as exploring the advantages and disadvantages and draining may be conducted by the team psychologist or social worker. However, it is helpful for all members of the team to have some familiarity with the principles.ConclusionsPoor adherence to treatment is a common and challenging clinical problem, particularly in chronic and lifelong illness such as CF. It has many determinants and requires a comprehensive approach to its management. A previously neglected but important component of management is a focus on motivation. MET is a relatively new technique, which offers a nonjudgmental, supportive, noncoercive, and exploratory approach to the reasons underlying the poor adherence. It allows patients to move through the various stages of readiness to change, until they are better motivated, with subsequent improved adherence. A motivational perspective might usefully be adopted within the pediatric clinic when assessing a child's difficulties with adherence and is likely to produce greater dividends than time spent trying to coerce the patient into adherence. Treatment studies are now under way. Pediatricians and their colleagues often have considerable difficulty in understanding and managing poor adherence. It is hard to comprehend why children with life-threatening illnesses do not adhere to their treatment regimens and even more difficult to comprehend why their parents do not provide optimal care. Yet, clinical experience indicates that in chronic illness such as cystic fibrosis (CF), epilepsy, asthma, or diabetes, poor adherence is the norm. The general response of clinicians and parents to poor adherence is to coerce. This tends to have the opposite effect to that intended. The focus of this paper is on motivational enhancement therapy in children and adolescents with chronic illness to improve adherence to treatment. Treatment overviewThere are multiple components to the treatment of poor adherence.1.D'Angelo S. Lask B. Approaches to problems of adherence.in: Bluebond-Langner M. Lask B. Angst D. Psychosocial aspects of cystic fibrosis. Arnold, London2001: 361-379Google Scholar These include (1) the use of a comprehensive approach, which pays due attention to biological, social, and psychological factors. Since adherence is influenced by many factors, no one method of intervention can sustain it (Barbero G. Personal communication); (2) the creation of a therapeutic alliance, in which there is collaboration between the child, parents, and clinicians. The aim is to move away from the outdated concept of “compliance,” with its implication that patients should do what the doctor tells them. Instead, the clinician moves toward “concordance”–an agreement reached after discussion between the patient and others that respects the patient's beliefs and wishes in determining whether, when, and how treatment is to be taken.2.Dickinson D. Wilkie P. Harris M. Taking medicines: concordance is not compliance.BMJ. 1999; 319: 787Crossref PubMed Google Scholar In other words, patients should become participants in, not just recipients of, their health care; (3) working with the child and parents: It is as inappropriate to neglect the parents in such situations as it is to neglect the child. They can play a major part in helping their child to improve adherence; and (4) adoption of a warm, empathic, and nonjudgmental approach, avoiding blaming, harassment, and coercion. This approach, the antithesis of how poor adherence is often tackled, informs motivational enhancement therapy, which is the focus of the rest of this paper. There are multiple components to the treatment of poor adherence.1.D'Angelo S. Lask B. Approaches to problems of adherence.in: Bluebond-Langner M. Lask B. Angst D. Psychosocial aspects of cystic fibrosis. Arnold, London2001: 361-379Google Scholar These include (1) the use of a comprehensive approach, which pays due attention to biological, social, and psychological factors. Since adherence is influenced by many factors, no one method of intervention can sustain it (Barbero G. Personal communication); (2) the creation of a therapeutic alliance, in which there is collaboration between the child, parents, and clinicians. The aim is to move away from the outdated concept of “compliance,” with its implication that patients should do what the doctor tells them. Instead, the clinician moves toward “concordance”–an agreement reached after discussion between the patient and others that respects the patient's beliefs and wishes in determining whether, when, and how treatment is to be taken.2.Dickinson D. Wilkie P. Harris M. Taking medicines: concordance is not compliance.BMJ. 1999; 319: 787Crossref PubMed Google Scholar In other words, patients should become participants in, not just recipients of, their health care; (3) working with the child and parents: It is as inappropriate to neglect the parents in such situations as it is to neglect the child. They can play a major part in helping their child to improve adherence; and (4) adoption of a warm, empathic, and nonjudgmental approach, avoiding blaming, harassment, and coercion. This approach, the antithesis of how poor adherence is often tackled, informs motivational enhancement therapy, which is the focus of the rest of this paper. Motivational enhancement therapyBackgroundMotivational enhancement therapy (MET) is based on the principle that coercion and harassment rarely change behavior but tend rather to reinforce it. Therefore, when children or adolescents with chronic illness are adhering poorly to their treatment regimen, it is counterproductive to criticise or blame them. A useful analogy is that of trying to stop an adolescent from smoking. Although adolescent smokers know all about the health risks, the expense of their habit, and all the other disadvantages, they continue to smoke. Attempts to convince them of the errors of their ways invariably fail. If education worked, there would be no adolescent smokers. In fact, we probably have more antismoking education than at any other time and more adolescent smokers than at any other time! Those who adhere poorly to their treatment regimen are like many smokers or users of other harmful substances; they know all about the health risks but they lack the motivation to change.MET focuses on enhancing motivation to change, so that other treatments become more effective. It has been applied successfully in a number of different pediatric contexts including smoking,3.Colby S. Monti P. Barnett N. Rohsenow D. Weissman K. Spirito A. et al.Brief motivational interviewing in a hospital setting for adolescent's smoking: a preliminary study.J Consul Clin Psychology. 1998; 66: 574-578Crossref PubMed Scopus (273) Google Scholar drug abuse,4.Monti P. Colby S. Barnett N. Spirito A. Rohsenhow D. Myers M. et al.Brief intervention for harm reduction with alcohol positive older adolescents in a hospital emergency department.J Consult Clin Psychology. 1999; 67: 989-994Crossref PubMed Scopus (619) Google Scholar and eating disorders,5.Gusella J. Butler G. Nicols L. Bird D. A brief questionnaire to assess readiness to change in adolescents with eating disorders: its application to group therapy.Eur Eating Disord Rev. 2003; 11: 58-71Crossref Scopus (50) Google Scholar in each of which there is commonly a resistance to treatment.This paper describes the application of motivational techniques for chronic illness in childhood and adolescence. BackgroundMotivational enhancement therapy (MET) is based on the principle that coercion and harassment rarely change behavior but tend rather to reinforce it. Therefore, when children or adolescents with chronic illness are adhering poorly to their treatment regimen, it is counterproductive to criticise or blame them. A useful analogy is that of trying to stop an adolescent from smoking. Although adolescent smokers know all about the health risks, the expense of their habit, and all the other disadvantages, they continue to smoke. Attempts to convince them of the errors of their ways invariably fail. If education worked, there would be no adolescent smokers. In fact, we probably have more antismoking education than at any other time and more adolescent smokers than at any other time! Those who adhere poorly to their treatment regimen are like many smokers or users of other harmful substances; they know all about the health risks but they lack the motivation to change.MET focuses on enhancing motivation to change, so that other treatments become more effective. It has been applied successfully in a number of different pediatric contexts including smoking,3.Colby S. Monti P. Barnett N. Rohsenow D. Weissman K. Spirito A. et al.Brief motivational interviewing in a hospital setting for adolescent's smoking: a preliminary study.J Consul Clin Psychology. 1998; 66: 574-578Crossref PubMed Scopus (273) Google Scholar drug abuse,4.Monti P. Colby S. Barnett N. Spirito A. Rohsenhow D. Myers M. et al.Brief intervention for harm reduction with alcohol positive older adolescents in a hospital emergency department.J Consult Clin Psychology. 1999; 67: 989-994Crossref PubMed Scopus (619) Google Scholar and eating disorders,5.Gusella J. Butler G. Nicols L. Bird D. A brief questionnaire to assess readiness to change in adolescents with eating disorders: its application to group therapy.Eur Eating Disord Rev. 2003; 11: 58-71Crossref Scopus (50) Google Scholar in each of which there is commonly a resistance to treatment.This paper describes the application of motivational techniques for chronic illness in childhood and adolescence. Motivational enhancement therapy (MET) is based on the principle that coercion and harassment rarely change behavior but tend rather to reinforce it. Therefore, when children or adolescents with chronic illness are adhering poorly to their treatment regimen, it is counterproductive to criticise or blame them. A useful analogy is that of trying to stop an adolescent from smoking. Although adolescent smokers know all about the health risks, the expense of their habit, and all the other disadvantages, they continue to smoke. Attempts to convince them of the errors of their ways invariably fail. If education worked, there would be no adolescent smokers. In fact, we probably have more antismoking education than at any other time and more adolescent smokers than at any other time! Those who adhere poorly to their treatment regimen are like many smokers or users of other harmful substances; they know all about the health risks but they lack the motivation to change. MET focuses on enhancing motivation to change, so that other treatments become more effective. It has been applied successfully in a number of different pediatric contexts including smoking,3.Colby S. Monti P. Barnett N. Rohsenow D. Weissman K. Spirito A. et al.Brief motivational interviewing in a hospital setting for adolescent's smoking: a preliminary study.J Consul Clin Psychology. 1998; 66: 574-578Crossref PubMed Scopus (273) Google Scholar drug abuse,4.Monti P. Colby S. Barnett N. Spirito A. Rohsenhow D. Myers M. et al.Brief intervention for harm reduction with alcohol positive older adolescents in a hospital emergency department.J Consult Clin Psychology. 1999; 67: 989-994Crossref PubMed Scopus (619) Google Scholar and eating disorders,5.Gusella J. Butler G. Nicols L. Bird D. A brief questionnaire to assess readiness to change in adolescents with eating disorders: its application to group therapy.Eur Eating Disord Rev. 2003; 11: 58-71Crossref Scopus (50) Google Scholar in each of which there is commonly a resistance to treatment. This paper describes the application of motivational techniques for chronic illness in childhood and adolescence. Assessment of motivationThe assessment of motivation is based on five stages of readiness to change6.Procheska J. Diclemente C. Norcross J. In search of how people change: applications to the addictive behaviors.Am Psychologist. 1992; 47: 1102-1114Crossref PubMed Scopus (6388) Google Scholar: (1) precontemplation, in which there is a denial of any problem with adherence or of any need to change; (2) contemplation, in which there is acknowledgement of a problem with adherence but denial of any need to change; (3) preparation, in which there is acknowledgement of a problem with adherence and of a need to change but unwillingness to change at present; (4) action, in which there is acknowledgement of a problem with adherence and of a need to change and willingness to attempt to do so; and (5) maintenance, in which adherence is improving, but help is requested to maintain the changes.These stages of readiness to change (or motivation), although described as if they are categories, are in fact placed along a continuum, with considerable overlap between them. Patients tend to fluctuate between the stages, and MET aims to help patients move forward along the continuum to the stages of “action” and then to “maintenance.” The assessment of motivation is based on five stages of readiness to change6.Procheska J. Diclemente C. Norcross J. In search of how people change: applications to the addictive behaviors.Am Psychologist. 1992; 47: 1102-1114Crossref PubMed Scopus (6388) Google Scholar: (1) precontemplation, in which there is a denial of any problem with adherence or of any need to change; (2) contemplation, in which there is acknowledgement of a problem with adherence but denial of any need to change; (3) preparation, in which there is acknowledgement of a problem with adherence and of a need to change but unwillingness to change at present; (4) action, in which there is acknowledgement of a problem with adherence and of a need to change and willingness to attempt to do so; and (5) maintenance, in which adherence is improving, but help is requested to maintain the changes. These stages of readiness to change (or motivation), although described as if they are categories, are in fact placed along a continuum, with considerable overlap between them. Patients tend to fluctuate between the stages, and MET aims to help patients move forward along the continuum to the stages of “action” and then to “maintenance.” Characteristics of METMET is a nonjudgmental approach characterized by warmth, respect, and empathy, all common to clinical practice, generally, but also characterized by curiosity, humility, low investment, and flexibili