An innovative approach combines relationship building and child development in a framework that professionals can use to enhance their work with families
The statistics for asthma in the United States are grim. According to US Centers for Disease Control and Prevention (CDC) estimated data, 17.3 million Americans are currently thought to have asthma and among children ages 5 and under, 5.8% had asthma in 1994, a 160% increase since 1980. Indeed, pediatric asthma has been the culprit responsible for more than 10 million school days missed annually (making it the number one cause of school absenteeism), and yearly, approximately $1 billion are lost in workplace productivity because of working parents who have to care for asthmatic children staying home from school.
Overall, the health care costs to treat this chronic illness in the United States are estimated at more than $6 billion per annum, and in 1995, according to CDC statistics, there were 1.9 million emergency department visits for asthma complications. Earlier this year, a report by the Pew Environmental Health Commission at the Johns Hopkins School of Public Health, Baltimore, concluded that the nation is in the grip of a rapidly growing asthma epidemic that is estimated to double by 2020, and will affect 29 million Americans by that time.
Coupled with such daunting figures, pediatric asthma is a personal disease that affects more than just the afflicted children. Parents, physicians, teachers, and day-care workers all become involved when a child suffers an asthma attack. And quite recently, the Brazelton Touchpoints Center (BTC) for Child Development Unit, Childrens Hospital, Boston, has designed a program intended to change the way asthma is managed in physician offices across the United States. Since 1996, the BTC has trained multidisciplinary teams from around the country to integrate the Touchpoints training model into existing programs in their communities. Presently, there are 30 network sites in the United States.
The creation of the Touchpoints Asthma Management Program (TAMP) was prompted by the near epidemic level of pediatric asthma existing in the United States and by the misunderstanding that is common between physicians and children with asthma and their parents.
The BTC is an organization that offers a training program based on the work of T. Berry Brazelton, MD, a pediatrician with more than 40 years of experience. (He has more than 200 scientific publications and 28 books to his credit, and his foremost achievement in pediatrics was the formulation of the Neonatal Behavioral Assessment Scale [NBAS] originally published in 1973, and revised subsequently. The NBAS is used worldwide to assess physical and neurological responses of newborns, as well as their emotional well-being and individual differences.) The TAMP program combines relationship building and child development in a framework that professionals can use to enhance their work with families. The new project really is more a matter of changing the way you look at psychosomatic disorders and the childs ability to master their own illness coupled with the ability to use providers to help them do that, Brazelton declares.
Philosophy and Execution
The bedrock on which the TAMP program is based is the Touchpoints philosophy. In Brazeltons relational model, Touchpoints are the predictable, often chaotic periods of regression in a young childs ongoing development. They are usually managed by the child and parent and, when resolved, lead to growth and development. With additional stressors, such as asthma attacks, to the normal periods of regression, affected families may need extra help. In the Touchpoints asthma model, these periods become opportunities for enhancing the relationship between family members and their provider. The providers role is transformed from being perceived as an unapproachable expert to the parents partner, which enables families to establish dialogue with their provider about asthma, and its treatment options plus related sensitive issues. The anticipated result of this enhanced communication is better control of the childs asthma, and improved quality of life for the affected family. Indeed, the Touchpoints model by itself is not intended to stand alone as a program, but is designed to be integrated into ongoing pediatric, early childhood, and family intervention services.
According to Brazelton, My concept is that you start taking allergic reactions seriously in a small baby, and use these preventive ideas when the infant breaks out with an allergic reaction, to take it seriously and avoid it. Then we would use each of these opportunities in the babys development to set up a preventive idea.
Ann C. Stadtler, MSN, director of the BTC, amplifies upon the concept, What we are looking at is the developing child, the developing parent, and how we can support them during the childs growth process. We view the childs development as being a discontinuous processbefore the child has this spurt of development, they have a falling apart. And in this falling apart, the child can also fall apart developmentally, so if they are starting to learn a new task, you may see that the underlines of development appear to be regressing, and perhaps also behaviorally as well. We know this causes insecurity for the parent, and if we can support them at these particular times, they really can see us as partnering with them.
History of TAMP
TAMP was initiated in December 1999, with an unrestricted grant from Merck. Although the concepts used for the asthma program were in development for 5 years, Brazelton points out that [Merck] gave us a chance to do something innovative that would address asthma as a disease. The present program would never have happened without it. The pilot program was implemented in Chicago in February 2000. After eight training sessions with members of the Touchpoints staff from Boston, the participating physicians and their staffs began utilizing the techniques in treating families with asthma. Three months after initial training, the Touchpoints staff met again with participating physicians to guide them in setting up parent and child groups.
These groups met to discuss the impact on their family of their childs illness, as well as to learn more about the disease and its management. The childrens groups were designed to increase their understanding of the illness, and to empower them to take an active self role in the management of their asthma. The age range for the childrens asthma group, according to Stadtler, is 4 to 11 years old. The age is significant only in that was the way the materials were designed.
As for the TAMP programs overall age appropriateness, Brazelton says it is for all ages but our concentration is on prevention, so the earlier the better. Even in preschool years we know it would be effective. I think that asthma is likely to show up in the preschool years, and so were aiming for it to be applied at those ages and the early school years. But the concepts behind itdepending on relationships between provider, parents, and childare universal.
Modalities and time lines
The Touchpoints model is a training program for multidisciplinary professionals. Its goal is to provide them with the skills and strategies with which they can build alliances with parents of children aged 0 to 3. The Touchpoints framework focuses on key points in the development of infants, toddlers, and their families. Touchpoints offers both individual and community-level training. And the instructional methods used for Touchpoints in general are also used in large part in TAMP, although with the asthma management program, the age range of the patients is greatly expanded to include preteens. Additionally, Brazelton and Stadtler stress that TAMP is very flexible and modular. Stadtler points out that for TAMP all of the background materials, as well as our regular training materials including the manual, were all Touchpoints materials. Then we added parts that articulated items related to chronic illnesses as we developed the TAMP program. But we already had the relational model, and the developmental model was all part of our regular materials.
The specific methods that the TAMP uses include a combination of lecture and presenting information, and getting feedback from the providers, telling us about what its like for them, and we do role playing, Stadtler says. Additionally, she says, We can do all of the things that we do in our [usual] Touchpoints training. Any of these modalities we could use depending on how much prior training they had, or what the specific group viewed as being needed. So its the full gamut of tools, but it would not be mainly didactic.
The usual length of time that TAMP is implemented is also highly dependent on what the targeted audience to be trained knows about Touchpoints, and what their needs are in their community. As Stadtler comments, If a site is totally on board with the Touchpoints philosophy, and they call us to say, We would like to put parent-child groups in place for asthma, and we have identified these providers, then we would sit down and within an afternoon session, go through the group training with them. And as they go through the 4 weeks, we would discuss each week with them as mentors, and make sure that everything needed was being supplied, such as materials or instruction. If youre talking about a timeline, thats probably 4 or 5 weeks. If youre talking about people without any Touchpoints training, then were talking about a long program similar to the pilot in Chicago. But if its going to be an eight-step program [eight training sessions], then you would need something akin to a 4- to 6-month period of time.
The thing with asthma is that it cuts across many disciplines, Stadtler declares. Because of the nature of the illness, all issues including health care, child care, or foster care have common overlapping elements and concerns.
Successful Pilot Program
Over a 5-month period that is concluding in June this year, TAMP has been implemented at five pediatric practices in the Chicago area where asthma prevalence is particularly high.
Terrold B. Butler, MD, a pediatrician who has been practicing for 20 years, serves patients and families on Chicagos South Side. I was recommended by a person from Merck for the pilot program, because of my interest in asthma, he says. When asked why Chicago has such elevated levels of asthma, Butler responds by saying that there are some theories as to why this is so. The first is that we no longer live in a dirty enough environment where some of the toxins or allergens that we might have seen in our bodies would have previously been linked to immunity; however, were not seeing that because of our cleanliness. The second is that there are increased pollutants in the air, and the third one is more [Chicago-centric], which relates to cockroach contaminants and allergens. I personally see a lot of this in the inner city when dealing with asthma. Also, [Federal statistics] show that blacks have a higher incidence of asthma prevalence than [other groups].
Summary evaluations by the participants in the TAMP pilot project include:
- 96% of the participants believed the program would help them be more effectively involved in the care of young asthma patients and their families;
- 94% indicated that they would recommend the program to other medical practices;
- 91% said they could incorporate what they learned from the program when caring for children with asthma and their families;
- 76% learned ways to help asthma patients and their families make the necessary changes in attitudes and behavior to better manage their asthma.
Stadtler affirms that the 1-year unrestricted Merck grant certainly allowed us to pilot the program, and now at the end of the year, we have a completed program that can be integrated into other training programs. She adds that as a result of the grant what we have is a packageour activity modulesthat our site network is looking to use.
With the recent pilot program in Chicago that ended in June, TAMP has not yet completed its evolution. Stadtler thinks that it is going to continue to develop. When it was in pilot form, we certainly learned a lot of things from it that we would change. We did group sessions, but they were not done in their full form. We would also put in much more evaluation than what happened during the pilot phase. I think the program by its nature will continue to change as we see that things work or dont work during the course of implementing it. In particular, we are not going to do it as the full program that was piloted. Were going to make it more modularin pieces. Its really wonderful that we can use the whole program or use part of it, depending on what the community is and what its needs are.
Stadtler further informs that the next venue for the TAMP effort is going to be in the state of Vermont. They have a very strong initiative that is just beginning there. So we will bring it there early next year, and do something very similar to what we did in the pilot phase. At other sites, we probably would go more toward doing the groups so the people are really trained in the Touchpoints model. We need to give them the model of this adaptation module perhaps through the group form in some places.
In its outreach efforts to educate both the public and practitioners about the Touchpoints relational model philosophy, as well as more information on TAMP, the BTC has a Web site at www.touchpoints.org. The information at that site covers frequently asked questions about Touchpoints, network sites, training schedules, and points of contact. Stadtler sums up the innovative approach to asthma by declaring that were asking the provider to shift their thinking, to have a paradigm shift. We need to have a real partnership between the provider and parent so we dont have children dying in the night because the parent did not recognize the severity of the symptoms because their previous inquiries were discounted by their provider, or the doctor did not recognize the seriousness of the illness because they werent directly hearing what the parent was saying.
Peter Pesavento is associate editor of RT Magazine.