Asthma Program

• Asthma Home
• About the Program
• Data & Surveillance
• General Information
• Interventions
• Legislation & Policy
• Resources

The Asthma Care Training (ACT) for Kids is a major initiative of the Asthma and Allergy Foundation of America (AAFA) [external link] to teach children and their families asthma self-management skills and thereby reduce the frequency and severity of asthma episodes. ACT for Kids is designed to complement appropriate medical care and to encourage families to work in concert with their physicians to control children’s asthma. The program is clinic-based, designed by a physician-led team of researchers; it operates in a variety of pediatric clinic settings throughout the United States.

After a review of pediatric asthma self-management programs available at the time, the creators of ACT for Kids decided to base their intervention on these key principles:

• A child must be an active participant in preventing and controlling symptoms.
• child must be able to recognize initial symptoms and know appropriate actions to take.
• Children and parents should be treated as equal partners in the learning and caring process.
• Activities for children need to be focused on skills and should increase their sense of mastery.
• Parents should be taught how to create a nurturing home environment that allows children to practice such newly acquired skills as decision-making and relaxation.

In accordance with these principles, the content and materials for the children participating in ACT for Kids were designed to be developmentally appropriate for children between the ages of 7 and 12. The concept of modeling, derived from Bandura’s Social Learning Theory, was incorporated into the design of the intervention. Modeling, in conjunction with interactive learning tools such as games and role-playing, gives the child an opportunity to observe and practice a skill or task under the supervision of a knowledgeable person who can help the child master that skill or task.

In 1983, the intervention was implemented in two allergy clinics in Los Angeles, CA, to determine its effectiveness compared with weekly lectures and discussion. The following sections discuss the goals of the intervention, the educational content of the intervention, the evaluation design, important characteristics of the study population, and the results of the intervention. The discussion of the research on ACT for Kids is based on the article by CE Lewis, G Rachelefsky, MA Lewis and others titled “ A randomized trial of A.C.T. (asthma care training) for kids” in the journal, Pediatrics, volume 74, pages 478-486, October 1984.

The intervention research had two primary goals. At the time the intervention research was conducted, no pediatric asthma self-management program had been evaluated utilizing a randomized control study; ACT for Kids was the first such program to test its effectiveness with the rigor of an experimental research design. The intervention sought to demonstrate the importance of addressing the emotional costs, for both parents and children, of living with asthma, and of using this understanding as a tool to teach asthma self-management skills. If children and their parents are able, in a safe environment, to express the fears, concerns, and frustrations of living with asthma, and if those feelings are acknowledged by others who have had similar experiences, and are addressed by medical professionals, then parents and children may feel more capable of taking the steps necessary to appropriately manage children’s asthma.

Educational Content of the Intervention
The educational sessions were based on the simplifying paradigm that a child with asthma is in “the driver’s seat.” As a driver, the child is responsible for maintaining his or her health in much the same manner as a driver is responsible for driving safely: symptoms, medications, techniques, and steps in an asthma management plan are, like traffic light signals, identified as either green, yellow, or red. For instance, green, yellow, and red stickers are used to color code medications. Families also use this paradigm to identify the types of independent decisions children can make about their asthma management. (In this case, green identifies those decisions a child makes alone, yellow those that the child makes with his or her parents, and red those that the doctor makes with the child’s parents.)

The intervention consisted of five 1-hour weekly sessions with five to seven children and their parents. Parents and children met in separate groups but were reconvened at the end of each session to share what they had learned. The sessions for parents and children covered the same content; however, the information was presented in developmentally appropriate formats. The session topics were as follows:

Lesson 1: Information was presented about the underlying mechanisms in asthma and resultant symptoms and signs are presented. The feelings associated with having asthma were explored.

Lesson 2: The environmental control of irritants and allergens was discussed.

Lesson 3: Relaxation skills and breathing exercises were taught. Children and their parents also meet individually with the physician to review prescribed drugs. Medications were color-coded with respect to their intended use. Dosage and side effects of each drug were reviewed.

Lesson 4: Decision-making skills concerning asthma management were demonstrated.

Lesson 5: The concept of balanced living was presented. The group process enabled comparisons of similarities and differences and the recognition that one is not alone in dealing with asthma. The sharing or transfer of responsibility for care from parent to child was facilitated by the group process.

Evaluation Design
ACT for Kids was evaluated using a randomized control study. Pediatric patients and their parents from two allergy clinics in Los Angeles were chosen to participate and were randomly assigned into control and experimental groups. Patients and parents in the experimental group received the ACT for Kids intervention while families in the control group attended three 1½-hour weekly educational sessions that presented the same content in a lecture format. The educational sessions for the control group also emphasized the child’s role in asthma management but did so as part of the lecture. These lectures were given to approximately six to 12 families (12 to 25 people) compared to five to seven families for the intervention group.

To detect changes in both the children’s and the parents’ knowledge, attitudes, beliefs, and skills with respect to asthma self-management, a structured interview guide was administered by telephone prior to the first class and then 3, 6, and 12 months after the end of the classes. Children and their parents were interviewed separately. Data were collected on the following outcome measures:

• knowledge of asthma symptoms, triggers, and medications
• child and parental perception of child’s health status
• actions taken by child at the onset of an episode (did child spontaneously take medicine or ask parent for it, or did parent administer)
• location of and child’s accessibility to medication
• child’s level of panic at the onset of an episode
• child’s use of breathing and relaxation exercises

The interview guide also contained two open-ended questions that asked families if they were doing anything differently as a result of their participation and what was the most important thing they learned from the class. The responses to these questions were subsequently categorized as knowledge, communication, changes in smoking behavior, change in father-child relationships, changes in lifestyle, changes in emergency room use, and changes in decision making. In addition to the interviews, medical records from the allergy clinics were reviewed to detect any changes in numbers of doctor office visits, emergency room visits, and hospitalizations.

Recruitment and Characteristics of the Study Population
The study was conducted with pediatric patients and their parents who were clients at two allergy clinics that were part of the Los Angeles Kaiser Permanente health system. The patients were identified by a review of the medical records. After patients were assigned to either the experimental or the control group, their families were contacted by telephone. Children were eligible to participate if they a) required medication at least 25% of the days of a month b) were between the ages of 7 and 12 and c) were verbally fluent in English.

The study population consisted of 103 children, with 41 in the experimental group and 62 in the control group. Observations were collected for 28 children in the experimental group and 48 children in the control group, for a total of 76 participants. Although socioeconomic status was not reported, researchers report that the children were mainly from middle class, working families, and that all were receiving care from pediatric allergists. Seventy-seven percent of the children were male, and the average age was 10.3 years. Approximately one third of the children were African American (32.9%) and one quarter were Hispanic (23.7%). Children in both groups were classified with similar levels of severity - 3.3 and 3.1 in the experimental and control groups, respectively - based on criteria put forth by the National Health Insurance Study. Children at level 3 receive medication continuously, experience fewer than eight severe attacks a year, have more than six mild attacks a year, and experience mild symptoms and minimal functional impairment between attacks.

The intervention was effective in increasing knowledge of triggers and in reducing perceived severity of asthma episodes in both experimental and control groups. However, there were significant increases in some self-reported compliance behaviors, such as remembering to take extra medicine when necessary and using self-care behaviors during an attack; there were also significant reductions in emergency room visits and days of hospitalization for children in the experimental group. Parents in the experimental group were also more likely to mention that there was improved communication and better father-child relationships. Furthermore, changes in parental smoking behavior resulted in less exposure for the child. Researchers estimated that, based on the reductions in hospital days and emergency room visits, and excluding the costs of developing and evaluating the intervention, there was an estimated cost savings of approximately $180 per child per year for those in the experimental group.

ACT for Kids intervention research was supported by grants from the National Center for Health Services Research, the UCLA Center for Interdisciplinary Research in Immunological Diseases (National Institutes of Allergy and Infectious Diseases), and The Allergy Research Foundation. The evaluation of the intervention was aided by a grant from the Southern California Permanente Medical Group, Department of Education and Research.

Educational lessons emphasize the role of the child as an active participant in preventing and controlling symptoms. The child is encouraged to recognize initial symptoms and know the appropriate actions to take for the management plan to be effective. Parents are encouraged in their nurturing skills and advised on creating a home environment where children can practice decision making in caring for themselves.

Although the research intervention used five 1-hour sessions to present the information, AAFA, in collaboration with UCLA, updated the lessons in 1997 to adhere to the Guidelines for the Diagnosis and Management of Asthma. The fourth and fifth lessons were integrated into the revised first and second lessons to form a total of three sessions. The following is a description of each of the lessons.

Lesson 1: Warning Signals-What Is Asthma, and How Does It Affects My Body
Parents and children identify asthma symptoms and discuss the similarities and differences in the children’s asthma symptoms and their progression. Children also discuss ways to communicate their symptoms to parents, physicians, and teachers. In addition to personal body maps created by children, parents and children also construct a group body map that allows them to compare symptoms identified by child and parent and to identify the severity of symptoms by a color code.

Lesson 2: Roadblocks-Why I Have Asthma and What Sets It Off
Children and parents learn to identify environmental triggers. They also discuss the similarities and differences in the children’s triggers. In addition, parents and children identify ways to avoid personal triggers. The asthma aggravators alphabet cards and the environmental walk around panels are used.

Lesson 3: Tune Ups-What to Do and When to Do It
Children and parents learn breathing and relaxation exercises and discuss the appropriate use of medications. Children also discuss ways to remember to take preventive measures. The last hour of this session is spent in one-on-one consultation with the physician to review medication.

Similar to the goals of the intervention research, the aims of ACT for Kids at Providence are to improve children’s understanding of asthma, its symptoms and triggers, and proper medication use so that they can play a central role in their own asthma management. Tables 1 to 3 outline the overall objectives of Providence’s ACT for Kids program and its specific objectives for children and parents, respectively.

Overall Program Objectives of ACT for Kids at Providence

• To reduce the frequency and severity of asthmatic episodes
• To increase childrens’ and parents’ knowledge of symptoms, causes, and treatment regimens
• To explore attitudes and feelings about asthma and its treatment
• To improve decision making skills in preventing asthma episodes
• To encourage parents to reinforce their children’s self-care behaviors

Objectives for Children Participating in ACT for Kids at Providence

• To increase the children’s knowledge and awareness of the symptoms and causes of asthma
• To assist children in identifying the factors which precipitate or aggravate asthma
• To increase children’s knowledge of the actions and side effects of asthma medications
• To increase children’s ability to apply the decision making process in preventing episodes and caring for themselves
• To help children explore their feeling and attitudes about having asthma and their medication treatment plans
• To apply knowledge, skills, and attitudes learned to reduce the frequency and severity of asthma episodes and to decrease unnecessary restrictions on activities of daily living

Objectives for Parents Participating in ACT for Kids at Providence

• To encourage parents to permit children to engage in self-care behaviors
• To encourage parents to examine their attitudes regarding roles of children versus parents in the care of asthma
• To give parents the same course content presented to their children, and to create a forum for them to explore and exchange concerns and questions regarding their children’s illness

ACT for Kids at Providence is offered to children ages 7 to 12 and their families. Siblings are also encouraged to participate whenever possible. Participants are recruited primarily by physician referral, but participants can also learn about the program from brochures, newspaper advertisements, and word-of-mouth. Although participants can self-refer to the program, they must obtain a physician referral before they are allowed to join the class. This requirement is in accordance with the idea that ACT for Kids is designed to be a supplement to good medical care and encourages families to work in concert with their physicians to manage the child’s asthma.

If the physician does not refer the patient directly, then the program coordinator sends the physician a letter to let him/her know that a patient is interested. The letter also explains the purpose, content, and format of the program and requests the physician’s permission. A blank referral form and a program brochure is sent with the letter. Once a completed referral form is received, the program coordinator calls the parent and informs him/her of the date and course time. If the parent and child agree to attend, they are sent a confirmation letter and a brochure describing the program. A reminder phone call is placed to the family prior to the class date. When the parent and child complete the class, a discharge summary is sent to the referring physician within 3 weeks of the end of the course. The discharge summary is a letter to thank the physician for the referral to the program. The letter also informs the physician that each patient was given a peak flow meter and spacer and that a physician associated with the program reviewed the patient’s medications.

Since the program’s inception in March 1999, 34 children and their families have participated in ACT for Kids at Providence.

Providence staff use the updated AAFA ACT for Kids program and teach the classes in two 3-hour sessions held on a Friday evening and a Saturday morning covering the content of all three lessons. A light meal is provided each day, with special consideration given to children with identified food allergies. The staff at Providence have found through parent surveys that this time is most convenient for the families, many of whom have to travel long distances to attend the class. The provision of food also facilitates families’ participation since they do not have to take time out to eat before attending class.

Ten families is the maximum allowed in each class. With assistance from a nurse, a doctor conducts both sessions for parents, and in a separate room, two nurses teach the children the same information, tailored to their age and abilities. In addition to asthma management and education, the last hour of the program is spent reviewing each child’s medications and their use in a one-on-one format with the family. Also addressed in this one-on-one session is the use of inhalers, spacers, and peak flow meters and their role as aids in asthma management. Furthermore, all families are given a “graduation bag” filled with toys, candy, additional asthma information, and a new peak flow meter.

The staff believes that using separate classrooms for the parents and children facilitates age- appropriate learning. Furthermore, children realize, sometimes for the first time, that they are not alone in living with asthma. They slowly become more comfortable and open during the session, which enables more concrete and substantive learning. Parents have a similar experience. They see other parents in similar situations that arise when one is coping with a child living with a chronic lung disease. Gradually there is increased understanding and acceptance of the disease and an eagerness to learn techniques that will help their children live a full life.

The training for future ACT for Kids instructors consists of a 2-hour session conducted by AAFA staff via telephone. This training is required to maintain the quality of the program and to ensure that the program is implemented as it was developed. The staff for ACT for Kids at Providence have received this training.

Instructors of the educational sessions must be trained healthcare professionals such as nurses, respiratory therapists, health educators, or social workers. Instructors of the medications portion of the program must be physicians, pharmacists, or registered nurses qualified to teach and answer questions about medication concepts.

Initially, the funding for ACT for Kids at Providence was problematic. Prior to the program’s implementation, the staff calculated a cost per class by estimating a budget that included staff hours, room costs, and refreshments for 10 participants per class. The cost for the program was estimated to be approximately $600 per patient. This figure was presented to and authorized by the hospital administration. The program was approved for implementation on a trial basis with the stipulation that ACT for Kids was to be self-sustaining.

After the first two classes, referring pediatric physicians heard from families that $600 was too expensive. As a result, physicians became reluctant to refer patients to the program. Despite the availability of scholarships, the $600 fee was a disincentive, and many families were unwilling to participate. Therefore, the decision was made to bring the program under the umbrella of the hospital’s cardiovascular unit. The cost for the program is absorbed into the cost of the pulmonary rehabilitation program. The hospital’s financial officers endorsed the move. The actual cost of the program did not change, but the cost charged was lowered to $100 per family. To defray operational expenses, the physicians in the program donate their time, and the ACT for Kids staff solicit donations and additional scholarships. Since this reconfiguration, pediatric physicians have become more comfortable with referring patients, and patients have become more willing to participate. However, this arrangement makes it difficult to identify funds spent exclusively to operate ACT for Kids.

AAFA does not conduct or require evaluations of the implementation of the program once it has been acquired by interested parties. AAFA welcomes opportunities to work collaboratively with organizations interested in implementing ACT for Kids to document effectiveness of the intervention. Providence staff members are currently gathering data for evaluation and publication. They will work jointly with UCLA to develop outcome data that include pre-post follow-ups, hospitalizations, emergency room visits, medication use, and missed school days.

Pre-packaged ACT for Kids kit: The ACT for Kids kit allows session leaders to follow a previously evaluated format for teaching asthma self-management. This is especially beneficial for session leaders who do not have a teaching background.

Structure of the sessions: The separate group meetings for the children and parents enable more concentrated and age-specific learning of the materials. This structure also permits parallel learning between parent and child. The hands-on, interactive play creates a more substantive learning environment for both children and parents..

Physician-led program: The involvement of three pediatric asthma specialists lends credibility to ACT for Kids. Parents, sometimes for the first time, have access to experts who can give them advice on how to cope with their specific situation. The doctors allow time during and after the class for questions and discussion on topics of interest to each parent.

Educational materials: The sessions use multimedia teaching materials that are user friendly. Lessons are taught not in lecture style but interactively and in an open manner that helps to empower and increase self-efficacy for both children and parents.

Administrative support: The hospital administration supports ACT for Kids and allows the program to be part of Pulmonary Rehabilitation. The administration is committed to the program despite the costs it imposes. Both the ACT for Kids staff and the hospital administration hope that the decrease in emergency room visits and hospitalization offset the cost of the program.

Lack of Funding Support: Third-party payers are often reluctant or refuse to reimburse for education programs, including asthma self-management programs. As a result, the cost of the program is often not reimbursable. Patients must either pay for their portion of the program costs themselves or apply for a scholarship. In the latter case, this forces the full cost of the program to be borne by the hospital. This cost may be difficult to absorb for financially strapped institutions or for those with a lack of administrative support for asthma education.

Physician cooperation: The staff tries hard to increase the visibility of ACT for Kids through advertisements, brochures, and word-of-mouth. However, many physicians still do not refer patients to the program; territorial or turf issues may be the cause. Other physicians may be cautious about referring their patients to other doctors’ programs or might prefer to educate patients about asthma themselves. Alternatively, some physicians may not be convinced of the benefits of asthma education. ACT for Kids staff continue to reach out to physicians to allay some of these concerns.