0031-3955/92 $0.00
ASTHMA
+ .20
PATIENT EDUCATION Janice H. Howell, MD, FRCPC, FAAP, Thomas Flaim, MD, and Colleen Lum Lung, RN, MSN, PNP
Morbidity and mortality from asthma have increased over the past decade despite improved understanding and significant advances in medical therapeutics. Among the identified contributing factors is poor compliance with prescribed medical regimens. Consequently, considerable attention has been paid to the issue and the role of health care providers in fostering improved adherence. In 1988 the National Heart, Lung, and Blood Institute initiated the National Asthma Education Program (NAEP). One of its goals is to encourage education as a routine part of medical care. 35 This was prompted by a recognition of the magnitude of the burden that asthma imposes on patients, their families, and the health care system, coupled with the knowledge that over the previous decade or so, several centers had developed effective asthma self-management programs. 7, 32, 41,58 These programs were designed to help families learn how to become active partners with their physicians in managing the disease and fostering improved compliance. Developed and tested in a variety of clinical settings with patients and families of different social, educational, and economic backgrounds, the programs have, for the most part, been shown to be effective, although none has been demonstrated to have superiority. Several programs have been made available to physicians and health care organizations and are listed in Table 1. Because these programs have been critically evaluated elsewhere,2, 4, 10, 18, 22, 43, 53, 56 the purpose of this article is to review the current understanding of the role of self-management programs in the overall care of the child with asthma, to discuss the factors believed to be From the Cohen Clinic OHH); National Jewish Center for Immunology and Respiratory Medicine OHH, TF, CLL); and University of Colorado Health Sciences Center OHH), Denver, Colorado
PEDIATRIC CLINICS OF NORTH AMERICA VOLUME 39 • NUMBER 6 • DECEMBER 1992
1343
1344
HOWELL et a1
essential to their effectiveness, and to provide information concerning the available resources.
DEVELOPMENT OF SELF-MANAGEMENT (CO-MANAGEMENT) PROGRAMS
The Children's Asthma Research Institute and Hospital in Denver was among the first to focus on developmentally appropriate selfmanagement skills for children as a tool for improving control over asthma and helping patients and their parents to achieve a significantly better quality of life. For more than 40 years, researchers at Children's Asthma Research Institute and Hospital, working initially with children in residential care, made systematic observations that led to the development of the Living With Asthma program9 that was modified and tested successfully on a group of outpatients. Physicians and educators at several other centers also saw the value of self-management and designed successful interventions. Among them is Asthma Care Training (ACT) for Kids28 that was developed and tested at the University of California, Los Angeles. With the active support of their parents, this program teaches children to be "in the driver's seat," using a traffic light analogy to help them categorize the severity of symptoms and take appropriate action. Because green is readily understood to stand for go, yellow for caution, and red for stop, participants learn to determine the severity of symptoms, then use the green-coded medications for prevention, the yellow ones for mild attacks or early symptoms, and red-coded medications to stop the attack. Investigators have worked with patients in private office practice/' 14, 19 pediatric clinics, 5 and health maintenance organizations. Programs have been set up in the emergency room and on the wards of a children's hospitaIS as well as at camps for children with asthma and in schools. 6, 33 Studies have involved families from across the socioeconomic and educational spectrum. The teaching methods have been as varied as the populations involved. Most have used didactic teaching and discussion groups, whereas others have developed written material, and at least one program makes use of interactive computers. 45,46 In addition, both lay and professional educators have participated successfully. Each of the programs cited has been studied objectively, and although there are significant differences in approach and study design, all have made use of accepted principles of human learning. When the Workshop on Asthma Self-ManagemenPS convened to review the data, it concluded that the weight of the evidence favored self-management programs, and subsequently, consistent with workshop recommendations, the National Heart, Lung, and Blood Institute launched the NAEP. Representatives of the major scientific, professional, governmental, and voluntary organizations participate in three subcommittees: one to work on patient and public education, a second to address the issues of professional education, and a third to deal with
PATIENT EDUCATION
1345
asthma education in schools. Consistent with the recommendations of the workshop and the NAEP, several effective self-management programs have been made available through the US Government Printing Office, and others can be obtained through the Asthma and Allergy Foundation and the American Lung Association (Table 1). It is evident that there is considerable support for asthma selfmanagement programs at both a governmental level and among physician organizations, and the major task remaining is to disseminate appropriate information and encourage physicians and other health care providers to use the resources available. ROLE OF SELF-MANAGEMENT (CO-MANAGEMENT) PROGRAMS
Self-management does not mean self-treatment, and it is important to note that no study evaluating a patient education program has Table 1. ASTHMA SELF-MANAGEMENT COURSES AVAILABLE The following courses are available for a charge of $50 or less: 1. Asthma Care Training for Kids (ACT): Five 1-hour group sessions, developed at University of California, Los Angeles. The Allergy and Asthma Foundation of America provides a training program for those giving the course. 2. CALM: Childhood Asthma, Learning to Manage: Manuals for home and physician use. Basics of asthma management with focus on use of peak flow meter. Peak flow meters also available. Both available from The Asthma and Allergy Foundation of America, Suite 203, 1717 Massachusetts Ave., Washington, DC 20036; phone (202) 466-7643. 3. Air Power and Air Wise: Developed at the American Institutes for Research in the Behavioral Sciences at Palo Alto, California, for children aged 9 to 13 years. Air Power is for groups of children and their parents; Air Wise is for individual administration to children whose asthma is difficult to manage. 4. Open Airways: Developed and evaluated by Columbia University with inner-city, lowincome children as subjects, this program is directed to pre-school and school-aged children and their parents. These publications are available from the Superintendent of Documents, US Government Printing Office, Washington, DC 20402. 5. Captain Respitore to the Rescue: Designed for children who have started reading through sixth grade. This program provides information about asthma, its care, and management. It is in a workbook format, allowing children to individualize it for their care and treatment. It is being revised and updated to reflect present treatment measures. The cost will be between $5.00 and $10.00. This program can be obtained by contacting the Pediatric Patient Education Department at National Jewish Center for Immunology and Respiratory Medicine. 6. Superstuff: Designed for 6- to 12-year-old children and their parents, this is a selfadministered program that can be used by patients and children with little or no outside support. This program is available through local chapters of the American Lung Association or Publications Department, American Lung Association, National Headquarters, 1740 Broadway, New York, NY 10019. 7. Teaching My Parents/Myself About Asthma: A school-based program for schoolaged children, their teachers, school psychologists, and nurses. This program can be obtained from Health Education Associates, 14 North Lake Road, Columbia, SC 29223.
1346
HOWELL et al
shown an increase in morbidity as a result of patients or parents accepting more responsibility for their care. Those who have participated in such courses did not overtreat at horne or delay seeking appropriate medical care. It also must be acknowledged that most patient education goes on in the physician's office, with formal courses supplementing that process. When families return from a formal course, they usually have a better base of knowledge and understanding on which the physician can build in developing a realistic care plan for the child. Nonetheless, the process must be seen as a continuum, with ongoing involvement of the physician and physician's staff in continually reevaluating and reinforcing knowledge and appropriate self-care. This process is particularly important with children because the level of responsibility assumed by the child should increase with advancing maturity. One of the positive effects of asthma education programs is often an improvement in the patient-physician interaction. This happens, in part, because parents are assisted in developing reasonable expectations, both for their child and for the medical care team. Although a considerable body of literature on the subject documents many factors that may enhance or interfere with compliance, the relationship with the physician is usually seen as being of major importance. It has become an article of faith that the medical care team and the family should work in an active partnership, each having distinct as well as overlapping responsibilities. Asthma is such a variable disease that parents and patients must of necessity make key observations and exercise considerable judgment. Hence, they must be educated and trained to take appropriate action under a wide variety of circumstances. ESSENTIAL COMPONENTS OF AN EFFECTIVE PROGRAM
An effective self-management program does not consist of a passive transfer of information but instead involves participants actively, the emphasis being on acquisition of skills. The ability to make valid observations, use good judgment, and make appropriate decisions must be fostered. The "4 Rs"
Among the essential features of effective programs, as articulated by the NAEP Expert Panel,35, 37 are the "4 Rs of patient education." Reach Agreement on Goals
The first principle of effective programs is to reach agreement on what is expected of an asthma treatment program. Before parents can
PATIENT EDUCATION
1347
have appropriate expectations, however, physicians must come to a consensus. Currently there seems to be a considerable gap between the level of morbidity experienced by many, if not most, children with asthma and the degree of control of symptoms that the Expert Panel of the NAEP considers to be attainable. The magnitude of the problem of childhood asthma is well known to pediatricians. It is the leading cause of hospitalizations of children and accounts for a large number of emergency room and office visits. Asthma results in interruptions in activities and loss of time from school and work and often has a negative effect on relationships and selfimageS! as well as compromises family finances. This reality stands in stark contrast to the expectations outlined by the paneP7 that asthma should not prevent children from living normal lives. With treatment, it is believed that they should be able to participate in sports and activities, miss little or no school because of asthma, sleep through the night, and avoid both troublesome, recurrent symptoms and side effects of medication. Unfortunately, these goals, potentially attainable by all but a small minority of school-aged and adolescent children, are poorly understood and accepted. Part of the reason that both physicians and parents alike often accept much more morbidity than necessary is that they think of asthma as an episodic rather than a chronic disease. Consequently, emphasis is placed on symptomatic use of medications rather than preventive measures such as environmental control and use of anti-inflammatory drugs like inhaled steroids and sodium cromoglycate. Restriction of the activity level of children with asthma by physicians and parents is common but usually not necessary. Fitness levels tend to be below that of peers without asthma, either as a result of poorly controlled disease and inactivity, poor self-image, or bothY Participation in an organized sports program may improve the selfimage of a child with asthma and decrease sense of isolation while building endurance. To produce successful results, exercise-induced bronchospasm must be adequately controlled. The child must have access to metered dose inhalers in school and at the playing field, and the intervention of the physician, nurse, or asthma education program may be necessary for school personnel to be comfortable with this. Principals, teachers, and coaches are usually more supportive when they understand what to do and what to expect and when they know that the child has been "trained." They often can assist in developing an appropriate schedule of inhaler use prior to strenuous activity and in teaching the importance of warm-ups and good pacing skills. Because these practices are important to all student athletes, the child with asthma is not singled out. Poorly controlled asthma can have a significant negative impact on a child's self-image, activity level, fitness, and relationships. Neither the parent nor physician should find this acceptable.
1348
HOWELL et al
Rehearsal
Both within formal asthma education programs and in the physician's office, parents and children should be expected to discuss and demonstrate elements of good care. A written crisis plan should be developed, and the family should know when to increase therapy, when to call the physician, or when to go immediately to an emergency room. Important techniques that need to be mastered include proper use of the metered dose inhaler, nebulizer, peak flow meter, and symptom diary. These techniques should not only be demonstrated to them, but the children and their parents should be able to show that they have acquired competency with these skills. Repetition
Repetition is also necessary, both within formal self-management courses and in office visits. Office staff can playa vital role in reviewing material presented in the asthma education course and by the physician to make sure it is understood and accepted. Reinforcement
Positive reinforcement in the form of praise from the educator, doctor, and office staff can be invaluable in helping people learn and acquire new skills, but perhaps the most effective reinforcement is success. Once the family members see significant improvement in symptoms and quality of life, they may be more compliant. Reassessment of skills at each visit also can serve to provide positive reinforcement of progress. Other Features of Effective Programs
Other features of successful programs include attention to the developmental age as well as cognitive abilities of the child. It is essential to identify the level of responsibility that he or she is capable of assuming and the amount and kind of information that can be understood. Hence, some flexibility is needed on the part of the educators and must be built into the teaching material. Table 2 presents guidelines developed at the National Jewish Center for Immunology and Respiratory Medicine to assist in determining the acceptable level of self-care responsibility for the child with asthma. The importance of this factor should not be underestimated. In the absence of guidance, the expectations placed on pediatric patients can vary considerably from an 8-year-old child who is expected to manage medical problems by himself or herself to a 14-year-old child who goes nowhere without a parent along to deal with the asthma. Although asthma education for children with the disease is effective, it seems to be even more so when parents are engaged in the
Table 2. DEVELOPMENTALLY BASED SELF-CARE FOR CHILDREN WITH ASTHMA Age (years)
o to 1.5 1.5 to 3
3to 5
6to 7
........, 01>-
I.C
Developmental Considerations Trust vs. Mistrust Need complete care Have different relationships with each family member Understand some language, some commands Autonomy vs. Doubt Cannot understand another's pOint of view Begin self-control Have little awareness of own body shell Can name some parts of the body-eyes, nose, ear Can put on simple garment Like to remove all clothing Test limits Initiative vs. Guilt Less dependent on parents, more interest in children Self-concept develops, get sense of where he or she belongs in family Thinking is unsystematic, illogical Magical thinking may lead to fears, especially about body Develop sense of effectiveness Ask a lot of questions Possessive toward parents Imitate, mimic Not yet able to understand game rules and logic Shared play (everything becomes a game, imaginary play, tries new roles, hates to lose) Beginning attachments for persons outside immediate family Learn what is acceptable and unacceptable behavior Great curiosity Industry VS. Inferiority Increasingly able to direct own attention, still distractible Thinking is systematic, logical but very concrete Relationships shift from family to peers and larger community Learn basic values Learn skills
Asthma Self-care Expectations
Step 0: Cooperation Cooperate in taking respiratory treatments and medications Respond to adult guidance to slow down or sit down
Learn body awareness with verbal labels for wheezing, tightness Learn to swallow pills
Step 1: Learn Basic Skills Take medications and respiratory treatments correctly when adults remind Use peak flow meter correctly with adult reminders Demonstrate "listening to self" (the internal stethoscope) so can report wheezing to adults and treat asthma attacks early Table continued on following page
....
~
Table 2. DEVELOPMENTALLY BASED SELF·CARE FOR CHILDREN WITH ASTHMA (Continued)
Q
Age (years) 7 to 8
8t09
9 to 10
11to12
Developmental Considerations
Industry vs. Inferiority Learn parents can be wrong Share some of own thought only with peers Moody Conform to avoid disapproval Impatient (especially with self) Understand concept of time Thinking is concrete Become capable of taking another's point of view Very conforming to group norms, find it hard to be different Industry vs. Inferiority Less distractible, now able to direct own attention Cooperative play Reduce need to dependency by using rituals Think of own needs first and are out to satisfy them Begin to see self within a label given by world (mean, nice, bully, cute, etc.) Able to spend night away from home Industry vs. Inferiority Thinking systematic, logical but concrete Parents and home a place to return to for some companionship, comfort and security Able to understand rules Cooperative play Increased competition Strong peer influence (clubs, groups) Social position has meaning Industry vs. Inferiority Self-consciousness, mood swings Begin ability to think abstractly Challenges enjoyed Chum and same sex peers important Modest with parents Outgoing, eager to please Sense of humor; improved communication skills Others' approval sought
Asthma Self-care Expectations
Step 2: Beginning Decision-making Request medications within 30 minutes of scheduled time Request and do peak flow meter, spirometry, and respiratory treatments at scheduled time. Record date, time, and results of peak flow, graph if appropriate Notice, report, and record triggers and if appropriate early warning signs Request pretreatments before exercise if ordered Demonstrate proper cleaning of equipment Step 3: Beginning Responsibility of Managing Symptoms Recognize and report wheezing or tightness Rest and relax at the first sign of wheezing or tightness Continue to record peak flow meter values at scheduled times Demonstrate and use breathing exercises Continue "listening to self" Step 4: Knowledge of Illness and Medications Know medications: including dose, times taken, action, indications, contraindications and side effects Parents, adults provide emotional backup and assistance with care when ability to self-manage is limited due to increasing symptoms Learn to take and record pulse if necessary
Step 5: Advance Decision-Making and Responsibility Prepare respiratory treatments with supervision Demonstrate use of Epi pen if doctor feels this is appropriate Assess condition before and after respiratory treatments Continue taking and recording pulse before and after respiratory treatments when necessary Update medication records regularly to reflect any changes in orders
13 to 14
14 to 15
16+
Identity VS. Role Confusion Adult type thinking-can handle more information at once Abstract thinking, can consider possibilities, ideals Self-consciousness, mood swings Develops consistent moral principles Worry about loss of identity High ambivalence between wanting limits versus freedom Enormous appetites Identity VS. Role Confusion Abstract thinking Working on how to have relationships with opposite sex Working on becoming psychologically independent from family Peer group belonging ness important Spend more time away from home Identity vs. Role Confusion Can conceptualize right and wrong logically according to the principles and ethics of their cultural group Consider possible educational and career directions
Step 6: Practice Independence Skills and Planning Prepare respiratory treatments without supervision Pack medications for 24 hours or 1 week at a time with supervision Demonstrate good preparation and judgment by making arrangements for medications and treatments that one will need if one goes off grounds or if one is away from home during a scheduled medication time Continue reporting all wheezing episodes and demonstrating wheezing protocol Step 7: Demonstrate Preparation for Independence in Treatment and Management of All Aspects of Care Pack medications for 1 week with supervision Keep written records of medications, peak flow, with supervision Prepare and take respiratory treatments independently Continue to report all episodes of wheezing Step B: Independent Functioning Prepare and take all medication and respiratory treatments independently Continue packing medications Arrange for refill of prescribed medications when low Assess condition before and after respiratory treatments Keep accurate records (medications, peak flows, symptoms diary)
From Klinnert MD, Tedesco J: Developmentally-based self-care in chronically ill children. Workshop presented at the meeting of the American Association for the Care of Children's Health. Boston, Massachusetts, 1985.
,... Y>
ASTHMA
+ .20
PATIENT EDUCATION Janice H. Howell, MD, FRCPC, FAAP, Thomas Flaim, MD, and Colleen Lum Lung, RN, MSN, PNP
Morbidity and mortality from asthma have increased over the past decade despite improved understanding and significant advances in medical therapeutics. Among the identified contributing factors is poor compliance with prescribed medical regimens. Consequently, considerable attention has been paid to the issue and the role of health care providers in fostering improved adherence. In 1988 the National Heart, Lung, and Blood Institute initiated the National Asthma Education Program (NAEP). One of its goals is to encourage education as a routine part of medical care. 35 This was prompted by a recognition of the magnitude of the burden that asthma imposes on patients, their families, and the health care system, coupled with the knowledge that over the previous decade or so, several centers had developed effective asthma self-management programs. 7, 32, 41,58 These programs were designed to help families learn how to become active partners with their physicians in managing the disease and fostering improved compliance. Developed and tested in a variety of clinical settings with patients and families of different social, educational, and economic backgrounds, the programs have, for the most part, been shown to be effective, although none has been demonstrated to have superiority. Several programs have been made available to physicians and health care organizations and are listed in Table 1. Because these programs have been critically evaluated elsewhere,2, 4, 10, 18, 22, 43, 53, 56 the purpose of this article is to review the current understanding of the role of self-management programs in the overall care of the child with asthma, to discuss the factors believed to be From the Cohen Clinic OHH); National Jewish Center for Immunology and Respiratory Medicine OHH, TF, CLL); and University of Colorado Health Sciences Center OHH), Denver, Colorado
PEDIATRIC CLINICS OF NORTH AMERICA VOLUME 39 • NUMBER 6 • DECEMBER 1992
1343
1344
HOWELL et a1
essential to their effectiveness, and to provide information concerning the available resources.
DEVELOPMENT OF SELF-MANAGEMENT (CO-MANAGEMENT) PROGRAMS
The Children's Asthma Research Institute and Hospital in Denver was among the first to focus on developmentally appropriate selfmanagement skills for children as a tool for improving control over asthma and helping patients and their parents to achieve a significantly better quality of life. For more than 40 years, researchers at Children's Asthma Research Institute and Hospital, working initially with children in residential care, made systematic observations that led to the development of the Living With Asthma program9 that was modified and tested successfully on a group of outpatients. Physicians and educators at several other centers also saw the value of self-management and designed successful interventions. Among them is Asthma Care Training (ACT) for Kids28 that was developed and tested at the University of California, Los Angeles. With the active support of their parents, this program teaches children to be "in the driver's seat," using a traffic light analogy to help them categorize the severity of symptoms and take appropriate action. Because green is readily understood to stand for go, yellow for caution, and red for stop, participants learn to determine the severity of symptoms, then use the green-coded medications for prevention, the yellow ones for mild attacks or early symptoms, and red-coded medications to stop the attack. Investigators have worked with patients in private office practice/' 14, 19 pediatric clinics, 5 and health maintenance organizations. Programs have been set up in the emergency room and on the wards of a children's hospitaIS as well as at camps for children with asthma and in schools. 6, 33 Studies have involved families from across the socioeconomic and educational spectrum. The teaching methods have been as varied as the populations involved. Most have used didactic teaching and discussion groups, whereas others have developed written material, and at least one program makes use of interactive computers. 45,46 In addition, both lay and professional educators have participated successfully. Each of the programs cited has been studied objectively, and although there are significant differences in approach and study design, all have made use of accepted principles of human learning. When the Workshop on Asthma Self-ManagemenPS convened to review the data, it concluded that the weight of the evidence favored self-management programs, and subsequently, consistent with workshop recommendations, the National Heart, Lung, and Blood Institute launched the NAEP. Representatives of the major scientific, professional, governmental, and voluntary organizations participate in three subcommittees: one to work on patient and public education, a second to address the issues of professional education, and a third to deal with
PATIENT EDUCATION
1345
asthma education in schools. Consistent with the recommendations of the workshop and the NAEP, several effective self-management programs have been made available through the US Government Printing Office, and others can be obtained through the Asthma and Allergy Foundation and the American Lung Association (Table 1). It is evident that there is considerable support for asthma selfmanagement programs at both a governmental level and among physician organizations, and the major task remaining is to disseminate appropriate information and encourage physicians and other health care providers to use the resources available. ROLE OF SELF-MANAGEMENT (CO-MANAGEMENT) PROGRAMS
Self-management does not mean self-treatment, and it is important to note that no study evaluating a patient education program has Table 1. ASTHMA SELF-MANAGEMENT COURSES AVAILABLE The following courses are available for a charge of $50 or less: 1. Asthma Care Training for Kids (ACT): Five 1-hour group sessions, developed at University of California, Los Angeles. The Allergy and Asthma Foundation of America provides a training program for those giving the course. 2. CALM: Childhood Asthma, Learning to Manage: Manuals for home and physician use. Basics of asthma management with focus on use of peak flow meter. Peak flow meters also available. Both available from The Asthma and Allergy Foundation of America, Suite 203, 1717 Massachusetts Ave., Washington, DC 20036; phone (202) 466-7643. 3. Air Power and Air Wise: Developed at the American Institutes for Research in the Behavioral Sciences at Palo Alto, California, for children aged 9 to 13 years. Air Power is for groups of children and their parents; Air Wise is for individual administration to children whose asthma is difficult to manage. 4. Open Airways: Developed and evaluated by Columbia University with inner-city, lowincome children as subjects, this program is directed to pre-school and school-aged children and their parents. These publications are available from the Superintendent of Documents, US Government Printing Office, Washington, DC 20402. 5. Captain Respitore to the Rescue: Designed for children who have started reading through sixth grade. This program provides information about asthma, its care, and management. It is in a workbook format, allowing children to individualize it for their care and treatment. It is being revised and updated to reflect present treatment measures. The cost will be between $5.00 and $10.00. This program can be obtained by contacting the Pediatric Patient Education Department at National Jewish Center for Immunology and Respiratory Medicine. 6. Superstuff: Designed for 6- to 12-year-old children and their parents, this is a selfadministered program that can be used by patients and children with little or no outside support. This program is available through local chapters of the American Lung Association or Publications Department, American Lung Association, National Headquarters, 1740 Broadway, New York, NY 10019. 7. Teaching My Parents/Myself About Asthma: A school-based program for schoolaged children, their teachers, school psychologists, and nurses. This program can be obtained from Health Education Associates, 14 North Lake Road, Columbia, SC 29223.
1346
HOWELL et al
shown an increase in morbidity as a result of patients or parents accepting more responsibility for their care. Those who have participated in such courses did not overtreat at horne or delay seeking appropriate medical care. It also must be acknowledged that most patient education goes on in the physician's office, with formal courses supplementing that process. When families return from a formal course, they usually have a better base of knowledge and understanding on which the physician can build in developing a realistic care plan for the child. Nonetheless, the process must be seen as a continuum, with ongoing involvement of the physician and physician's staff in continually reevaluating and reinforcing knowledge and appropriate self-care. This process is particularly important with children because the level of responsibility assumed by the child should increase with advancing maturity. One of the positive effects of asthma education programs is often an improvement in the patient-physician interaction. This happens, in part, because parents are assisted in developing reasonable expectations, both for their child and for the medical care team. Although a considerable body of literature on the subject documents many factors that may enhance or interfere with compliance, the relationship with the physician is usually seen as being of major importance. It has become an article of faith that the medical care team and the family should work in an active partnership, each having distinct as well as overlapping responsibilities. Asthma is such a variable disease that parents and patients must of necessity make key observations and exercise considerable judgment. Hence, they must be educated and trained to take appropriate action under a wide variety of circumstances. ESSENTIAL COMPONENTS OF AN EFFECTIVE PROGRAM
An effective self-management program does not consist of a passive transfer of information but instead involves participants actively, the emphasis being on acquisition of skills. The ability to make valid observations, use good judgment, and make appropriate decisions must be fostered. The "4 Rs"
Among the essential features of effective programs, as articulated by the NAEP Expert Panel,35, 37 are the "4 Rs of patient education." Reach Agreement on Goals
The first principle of effective programs is to reach agreement on what is expected of an asthma treatment program. Before parents can
PATIENT EDUCATION
1347
have appropriate expectations, however, physicians must come to a consensus. Currently there seems to be a considerable gap between the level of morbidity experienced by many, if not most, children with asthma and the degree of control of symptoms that the Expert Panel of the NAEP considers to be attainable. The magnitude of the problem of childhood asthma is well known to pediatricians. It is the leading cause of hospitalizations of children and accounts for a large number of emergency room and office visits. Asthma results in interruptions in activities and loss of time from school and work and often has a negative effect on relationships and selfimageS! as well as compromises family finances. This reality stands in stark contrast to the expectations outlined by the paneP7 that asthma should not prevent children from living normal lives. With treatment, it is believed that they should be able to participate in sports and activities, miss little or no school because of asthma, sleep through the night, and avoid both troublesome, recurrent symptoms and side effects of medication. Unfortunately, these goals, potentially attainable by all but a small minority of school-aged and adolescent children, are poorly understood and accepted. Part of the reason that both physicians and parents alike often accept much more morbidity than necessary is that they think of asthma as an episodic rather than a chronic disease. Consequently, emphasis is placed on symptomatic use of medications rather than preventive measures such as environmental control and use of anti-inflammatory drugs like inhaled steroids and sodium cromoglycate. Restriction of the activity level of children with asthma by physicians and parents is common but usually not necessary. Fitness levels tend to be below that of peers without asthma, either as a result of poorly controlled disease and inactivity, poor self-image, or bothY Participation in an organized sports program may improve the selfimage of a child with asthma and decrease sense of isolation while building endurance. To produce successful results, exercise-induced bronchospasm must be adequately controlled. The child must have access to metered dose inhalers in school and at the playing field, and the intervention of the physician, nurse, or asthma education program may be necessary for school personnel to be comfortable with this. Principals, teachers, and coaches are usually more supportive when they understand what to do and what to expect and when they know that the child has been "trained." They often can assist in developing an appropriate schedule of inhaler use prior to strenuous activity and in teaching the importance of warm-ups and good pacing skills. Because these practices are important to all student athletes, the child with asthma is not singled out. Poorly controlled asthma can have a significant negative impact on a child's self-image, activity level, fitness, and relationships. Neither the parent nor physician should find this acceptable.
1348
HOWELL et al
Rehearsal
Both within formal asthma education programs and in the physician's office, parents and children should be expected to discuss and demonstrate elements of good care. A written crisis plan should be developed, and the family should know when to increase therapy, when to call the physician, or when to go immediately to an emergency room. Important techniques that need to be mastered include proper use of the metered dose inhaler, nebulizer, peak flow meter, and symptom diary. These techniques should not only be demonstrated to them, but the children and their parents should be able to show that they have acquired competency with these skills. Repetition
Repetition is also necessary, both within formal self-management courses and in office visits. Office staff can playa vital role in reviewing material presented in the asthma education course and by the physician to make sure it is understood and accepted. Reinforcement
Positive reinforcement in the form of praise from the educator, doctor, and office staff can be invaluable in helping people learn and acquire new skills, but perhaps the most effective reinforcement is success. Once the family members see significant improvement in symptoms and quality of life, they may be more compliant. Reassessment of skills at each visit also can serve to provide positive reinforcement of progress. Other Features of Effective Programs
Other features of successful programs include attention to the developmental age as well as cognitive abilities of the child. It is essential to identify the level of responsibility that he or she is capable of assuming and the amount and kind of information that can be understood. Hence, some flexibility is needed on the part of the educators and must be built into the teaching material. Table 2 presents guidelines developed at the National Jewish Center for Immunology and Respiratory Medicine to assist in determining the acceptable level of self-care responsibility for the child with asthma. The importance of this factor should not be underestimated. In the absence of guidance, the expectations placed on pediatric patients can vary considerably from an 8-year-old child who is expected to manage medical problems by himself or herself to a 14-year-old child who goes nowhere without a parent along to deal with the asthma. Although asthma education for children with the disease is effective, it seems to be even more so when parents are engaged in the
Table 2. DEVELOPMENTALLY BASED SELF-CARE FOR CHILDREN WITH ASTHMA Age (years)
o to 1.5 1.5 to 3
3to 5
6to 7
........, 01>-
I.C
Developmental Considerations Trust vs. Mistrust Need complete care Have different relationships with each family member Understand some language, some commands Autonomy vs. Doubt Cannot understand another's pOint of view Begin self-control Have little awareness of own body shell Can name some parts of the body-eyes, nose, ear Can put on simple garment Like to remove all clothing Test limits Initiative vs. Guilt Less dependent on parents, more interest in children Self-concept develops, get sense of where he or she belongs in family Thinking is unsystematic, illogical Magical thinking may lead to fears, especially about body Develop sense of effectiveness Ask a lot of questions Possessive toward parents Imitate, mimic Not yet able to understand game rules and logic Shared play (everything becomes a game, imaginary play, tries new roles, hates to lose) Beginning attachments for persons outside immediate family Learn what is acceptable and unacceptable behavior Great curiosity Industry VS. Inferiority Increasingly able to direct own attention, still distractible Thinking is systematic, logical but very concrete Relationships shift from family to peers and larger community Learn basic values Learn skills
Asthma Self-care Expectations
Step 0: Cooperation Cooperate in taking respiratory treatments and medications Respond to adult guidance to slow down or sit down
Learn body awareness with verbal labels for wheezing, tightness Learn to swallow pills
Step 1: Learn Basic Skills Take medications and respiratory treatments correctly when adults remind Use peak flow meter correctly with adult reminders Demonstrate "listening to self" (the internal stethoscope) so can report wheezing to adults and treat asthma attacks early Table continued on following page
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Table 2. DEVELOPMENTALLY BASED SELF·CARE FOR CHILDREN WITH ASTHMA (Continued)
Q
Age (years) 7 to 8
8t09
9 to 10
11to12
Developmental Considerations
Industry vs. Inferiority Learn parents can be wrong Share some of own thought only with peers Moody Conform to avoid disapproval Impatient (especially with self) Understand concept of time Thinking is concrete Become capable of taking another's point of view Very conforming to group norms, find it hard to be different Industry vs. Inferiority Less distractible, now able to direct own attention Cooperative play Reduce need to dependency by using rituals Think of own needs first and are out to satisfy them Begin to see self within a label given by world (mean, nice, bully, cute, etc.) Able to spend night away from home Industry vs. Inferiority Thinking systematic, logical but concrete Parents and home a place to return to for some companionship, comfort and security Able to understand rules Cooperative play Increased competition Strong peer influence (clubs, groups) Social position has meaning Industry vs. Inferiority Self-consciousness, mood swings Begin ability to think abstractly Challenges enjoyed Chum and same sex peers important Modest with parents Outgoing, eager to please Sense of humor; improved communication skills Others' approval sought
Asthma Self-care Expectations
Step 2: Beginning Decision-making Request medications within 30 minutes of scheduled time Request and do peak flow meter, spirometry, and respiratory treatments at scheduled time. Record date, time, and results of peak flow, graph if appropriate Notice, report, and record triggers and if appropriate early warning signs Request pretreatments before exercise if ordered Demonstrate proper cleaning of equipment Step 3: Beginning Responsibility of Managing Symptoms Recognize and report wheezing or tightness Rest and relax at the first sign of wheezing or tightness Continue to record peak flow meter values at scheduled times Demonstrate and use breathing exercises Continue "listening to self" Step 4: Knowledge of Illness and Medications Know medications: including dose, times taken, action, indications, contraindications and side effects Parents, adults provide emotional backup and assistance with care when ability to self-manage is limited due to increasing symptoms Learn to take and record pulse if necessary
Step 5: Advance Decision-Making and Responsibility Prepare respiratory treatments with supervision Demonstrate use of Epi pen if doctor feels this is appropriate Assess condition before and after respiratory treatments Continue taking and recording pulse before and after respiratory treatments when necessary Update medication records regularly to reflect any changes in orders
13 to 14
14 to 15
16+
Identity VS. Role Confusion Adult type thinking-can handle more information at once Abstract thinking, can consider possibilities, ideals Self-consciousness, mood swings Develops consistent moral principles Worry about loss of identity High ambivalence between wanting limits versus freedom Enormous appetites Identity VS. Role Confusion Abstract thinking Working on how to have relationships with opposite sex Working on becoming psychologically independent from family Peer group belonging ness important Spend more time away from home Identity vs. Role Confusion Can conceptualize right and wrong logically according to the principles and ethics of their cultural group Consider possible educational and career directions
Step 6: Practice Independence Skills and Planning Prepare respiratory treatments without supervision Pack medications for 24 hours or 1 week at a time with supervision Demonstrate good preparation and judgment by making arrangements for medications and treatments that one will need if one goes off grounds or if one is away from home during a scheduled medication time Continue reporting all wheezing episodes and demonstrating wheezing protocol Step 7: Demonstrate Preparation for Independence in Treatment and Management of All Aspects of Care Pack medications for 1 week with supervision Keep written records of medications, peak flow, with supervision Prepare and take respiratory treatments independently Continue to report all episodes of wheezing Step B: Independent Functioning Prepare and take all medication and respiratory treatments independently Continue packing medications Arrange for refill of prescribed medications when low Assess condition before and after respiratory treatments Keep accurate records (medications, peak flows, symptoms diary)
From Klinnert MD, Tedesco J: Developmentally-based self-care in chronically ill children. Workshop presented at the meeting of the American Association for the Care of Children's Health. Boston, Massachusetts, 1985.
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