Public Health, Spring 1998

Asthma Zappers

In Atlanta's Empowerment Zone, a partnership of academic, government, community, and health care leaders has developed a participatory research strategy to tackle today's most serious chronic conditio

n of children.

by Rhonda Mullen

Now, whenever it rains, Marcia Clinkscales thinks of them, the boys and girls who sat in the room that morning and taught her what it is like to live with asthma. "They told me, When it rains, you just put on your raincoat and go outside without thinking about it. I have to decide, how am I going to intersect this air. I have to balance it, how to warm this inside air to match this colder air outside." They told her other things, too. How having asthma feels l ike someone's trying to drown you. How friends don't want to sit by you if you have asthma because they're scared they'll get it. How the medicine tastes awful and leaves you weak. "I wish my mom could take my asthma away," said one child.

This group of 10- to 12-year-olds had come together to participate in a focus group to share their stories about living with asthma. Moderated by Clinkscales, who has a PhD in organizational communications and is a recent graduate of Emory's Candler Sc hool of Theology, the focus group was just one part of the homework that researchers completed in the planning process for a large, new community-based study on pediatric asthma.

"Among children, we know that 80% of the deaths from asthma are among those who live in urban areas," says Joyce Essien, director of the Center for Public Health Practice at the Rollins School of Public Health. "We also know that this is a problem that cannot be solved by medical treatment, physicians, and hospital emergency rooms alone. We conducted focus groups of children, parents, and physicians to ask them about the challenges they face in managing the disease."

Essien saw an opportunity to convene partners from many sectors--public, private, community, and nonprofit--to see if community knowledge coupled with the best science and research could measurably improve the quality of life for inner city children wh o live with asthma. The resulting participatory research study will assess whether a comprehensive community-based prevention program that enables families to reduce exposure to known asthma triggers in the home can reduce asthma symptoms and the cost of care.

Asthma is a problem of epidemic proportions in impoverished, inner city communities. Nationally, asthma affects more than 5 million children, with researchers estimating that annual medical costs of asthma in children top $1 billion. African-American c hildren are four times more likely to die of asthma than other Americans. In Atlanta's Empowerment Zone (EZ)--an area with special funding from the federal government and the focus of this study--these rates are even worse. Asthma accounts for 2,000 emerg ency room visits and 300 hospital admissions each year by children living in the EZ. Also, the asthma hospitalization rate for children in the Atlanta EZ is higher than the national average. According to Kathleen Adams, a health economist at the school, M edicaid data indicates that the cost of treating children in the inner city is many times higher than for treating kids in the private sector.

To take on this tenacious chronic disease, the partners had to look beyond traditional approaches. They have worked together to learn from each other, not only about the disease but also the community and its assets. Their approach puts the community s quarely in the picture not just as objects of the study but as active participants in planning, delivering, and sustaining interventions. Their search has led them on a journey of discoveries about this preventable disease that causes so many children's d eaths. It has taught them how to work together to bring diverse perspectives to the challenge.

A beginning

Asthma has become epidemic in impoverished, inner-city communities, affecting more than 5 million children nationwide.

*ZAP Asthma, Inc. includes American Association of Health Plans, American Lung Association of Georgia, Atlanta Empowerment Zone Corporation, Blue Cross Blue Shield of Georgia, CDC, Cigna HealthCare of Georgia, Clark Atlanta University, Co mmunity Empowerment Advisory Board, Rollins School of Public Health, Fulton County Health Department, Grady Health Systems, Kaiser Permanente, Principal Health Care of Georgia, Inc., Prudential Health Care Plan of Georgia, Inc., Southwest Hospital and Med ical Center, United Health Care of Georgia.

This $5 million asthma initiative got its start when the Centers for Disease Control and Prevention (CDC) began looking for ways to offer assistance to the newly designated Atlanta EZ. Some 50,000 people live in the Atlanta EZ in 30 neighborhoods near the central business district, with a poverty rate of 57.4%. The CDC contacted Essien at the School of Public Health to enlist her help around the same time she heard from the American Association of Health Plan s, an organization of HMOs that was seeking to contribute to a public health project in an urban, underserved community.

Essien helped make the crucial connections between the networks. Soon, Marcia Griffith came on detail from the CDC to join in the planning and to take on the role of project manager. The team was forming, with health organizations in the city of Atlant a, other academic institutions, HMOs, and community hospitals coming on board.*

The HMO's decision to become involved was not simply a business decision, says Evonne Yancey, of Kaiser Foundation Health Plan of Georgia, vice president of the partnership's board of directors, and a member of the Rollins School of Public Health's Dea n's Council. "We realized the end result will be a healthier community, and the base from which we draw our members will be healthier."

The health problem that kept drawing the group's attention was asthma. But where to begin with such a complex condition? "Our brainstorming group launched into a firestorm of challenges," says Essien. "This problem required a change in the way we do bu siness. The work was more complex than our individual disciplines could handle. We needed to harness our diversity."

"What none of us understood at the beginning were the intricacies of putting together a public and private initiative," says Yancey. "Early on, we decided to leave the competition at the door and not to seek to enroll these children in our HMOs."

"In public health, we are moving to a new paradigm," says William C. Parra, deputy director of the CDC's National Center for Environmental Health and a member of ZAP Asthma, "where we involve the community not at the end of the research project but fro m the beginning as a part of the whole process."

The partners recognized the need to acknowledge and overcome the negative experiences that many communities may have had in the past. "Often, these communities have been researched and needs-assessed to death," Essien says. "We didn't want to race into an underserved community, develop a partnership, and then disappear when the funding ran out. So we made a commitment to focus our vision on sustainability, to enhance the capacity of the community to build and sustain health solutions."

Recognizing and engaging community assets is an essential component of the partners' vision. Community participants serve on the working committees and the governing bodies of the initiative.

On October 30, 1996, the 16 founding partners signed a memorandum of understanding committing themselves to the community-based asthma prevention model. ZAP Asthma was born.

The linchpin

ZAP Asthma team players from the school include (l to r): Joyce Essien, Kathleen Adams, and Stephen Margolis.

Our community health workers are the cornerstone and linchpin for Zap Asthma," says Lawrence Sanders, vice president of medical affairs and medical director of Southwest Hospital & Medical Center and chair of the Zap Asthma board.

The community health workers are 12 residents of the EZ neighborhoods, who have been hired and trained to conduct environmental audits of homes where children with asthma live. They also coordinate environmental interventions and work with families to sustain the interventions that reduce exposure to known asthma triggers. The interventions include encasing bedding and pillows to reduce exposure to dust mites, the eradication of cockroaches, effective housecleaning methods to reduce exposure to dust an d mold, and health promotion strategies to reduce exposure to environmental tobacco smoke.

The CDC developed the protocol the community health workers are delivering. "We have learned from previous studies that if we reduce these triggers in the laboratory setting, then a child's asthma will improve," says CDC's Parra, who has served on the ZAP Asthma board. "What we don't know is if we can reduce these triggers in an applied setting. Can we get the community health workers to be effective spokespersons?"

Valena Henderson, a community representative who also sits on the board, emphasizes the importance of the community health workers to the project. "There is a certain type of person that people in our community will accept," she says. "We are skeptical about letting just anyone in and telling them our business. So if ZAP Asthma hired outsiders instead of health workers from the community, we wouldn't get too much accomplished."

The ZAP Asthma group approached the recruiting process for the community health workers with the same thorough preparation as they have other elements of the project. They hired human resources personnel to develop a detailed job description that pinpo inted specific skills, and they interviewed close to 90 people for the 12 positions.

Once hired, the community health workers went through an intensive training course, learning not only about asthma but also how to conduct environmental audits of the homes, to coordinate environmental interventions and work with families to sustain th ose interventions, and to acquire the computer and data collection skills necessary to support the analytic components of the study. "We spent a lot of time perfecting their communications skills," says Marcia Griffith. "The workers had to overcome their timidity in approaching strangers, in talking with them about the project, and then in making home visits." At the end of the training, Atlanta Mayor Bill Campbell awarded these 12 community health workers a certificate signifying their accomplishment and commitment.

The community health workers also assist the sustainability of the ZAP Asthma effort. "Even after the program is over, these workers will have skills that are transferable," says Griffith. "They are empowered and equipped for more than just work with a sthma."

On the front line

The community health workers are dedicated to these kids," says supervisor Valerie Taylor. "That's what motivates them because they realize they are the front line to helping these kids."

Tammy Nichols, one of these front-line asthma zappers, has spoken at health fairs and at community meetings in the metro Atlanta area, spreading the lessons she learned in training about what triggers asthma and the importance of medication and environ mental control. Herself an asthma sufferer as a child, Nichols sees her role now as "empowering the community to better manage asthma. We're teaching people to self-manage, and we're trying to break down fear," she says.

Twice a month, Nichols covers a shift in the emergency room at Hughes Spalding Children's Hospital, recruiting participants for the ZAP Asthma study. Of the four children's families that she met on a recent day, two signed up for the study, and two dec lined. "Some people fear the project," she explains. "They think it's just another program that is coming in and will then leave." But interest is growing and the community health workers are making headway.

The work is hard, Nichols admits. "Every time I go to the ER, I feel overwhelmed. These families have so many problems. They live in such challenging circumstances. One lady came in with her sister's child. Her sister is a drug addict so she's taken on responsibility for her children as well as her own. Another woman I met had three children, ages 3, 5, and 6, all with asthma."

Nichols acts as a sounding board, listening and assisting them with problems related to asthma. "We might think that parents neglect their children's asthma," she says, "but with all their other problems, they simply can't manage it. A lot of them have been hurt by people promising them something and not delivering. We need to teach them to take power for themselves and make them independent."

Measuring success

These children participated in the focus groups that helped researchers hone the study, sharing their stories of living with asthma and their biggest concerns about the disease.

Because asthma is a complicated disease to manage, and because the population the ZAP Asthma partnership is trying to help is the one most crippled by the disease, the approaches likewise have been necessaril y complex, requiring expertise in many disciplines and support from several arenas.

Donna Jones, a pediatrician and faculty member of Emory School of Medicine, works with ZAP Asthma's clinical program. In the primary care clinic at Hughes Spalding, she sees many asthma cases. "This is a chronic, not an episodic, disease," she says. "I t requires complicated medical management with many drugs. We want families to understand the illness better and to assist them with management. But any disease that takes a lot of time--requiring children to get their medications on time, even when they seem to be well, or keeping a controlled environment with no smoking or uncovered mattresses--is very difficult to manage."

But Jones's role is more than a primary care provider who refers asthma patients to the ZAP Asthma study. She also is a former CDC epidemiologist familiar with data collection techniques and a 1990 graduate of the Rollins School of Public Health.

Researchers at the school are using two sources to measure the impact of the ZAP Asthma intervention: chart reviews and hospital billing data. Kathleen Adams is working on a health care utilization and cost data analysis of the intervention. As familie s are enrolled in the study, Adams will track various factors, including their number of emergency room visits, lost days from school, and costs associated with lost days from work. Her data will give the study some hard facts on how health status outcome s change and how costs are affected.

For example, if children in the ZAP Asthma program use a regular primary care physician rather than more expensive emergency room visits to manage their disease, costs should go down. Medication costs may rise. Still, Adams suspects an overall savings.

Another research strategy used by the Center for Public Health Practice is results mapping. The community health workers thoroughly document the experiences of the ZAP Asthma families as they encounter the intervention. The results mapping structure al lows researchers to have a documented history of the program's impact on each client, an assessment of the relative quality of these impacts, insights regarding which intervention strategies have been most successful, and an estimated return on the invest ment for the time of the outreach workers.

A movement against asthma

On a recent spring morning outside the ZAP Asthma office, researchers and community leaders from around the country gathered to learn more about the ZAP Asthma partnership model. They came from Detroit, Bosto n, Cleveland, Chicago, Oakland, and Pasadena. Essien opened the meeting, explaining, "This has really been a journey for all the participants."

These participants are interested in embarking on their own journey to find some model for tackling asthma. "The outcome of ZAP Asthma will enable us to convince other communities--in New York, Chicago, Seattle, all who have expressed an interest--to t ry this model. If it works, we'll have the compelling evidence it is worthwhile," says Parra. "We'll also be able to provide Congress with specific information that supports a national program."

While the research study has many goals--to improve the health of children with asthma, to reduce health care costs, and to empower the community to remedy the conditions that expose children to asthma triggers--an important priority for Essien has bee n to create a model for a learning group of partners that can achieve health solutions at the community level and be greater than the sum of its parts. "This experience provides the platform for developing action models that enhance our understanding of h ow to effectively address a wide range of health issues embedded in complex social problems in the communities that bear the greatest burden of morbidity and mortality," says Essien. She believes the ZAP Asthma approach builds solutions that reflect the r eality of the complexity of the health problems that plague inner city children.

Others are thinking so, too. As a result of the work here in Atlanta, collaborations are forming in Chicago and Detroit to replicate the program. A movement to zap asthma is spreading across the country.

by Rhonda Mullen

Spring 1998 Issue | Dean's Message | Asthma Zappers | Cyber Class | Go Girls & Eat for Life
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