Kids with asthma can...

Photos:Suzanne Camarata

by Marty Downs

The pool of the Roxbury Family YMCA echoed with shouts of surprise and pure delight as more than 60 children and teenagers—some of whom had never before been in a swimming pool—splashed, chased each other and played games on the first Saturday in June. Outside, an equally enthusiastic crowd played soccer and football, explored an emergency medical vehicle and learned how to best manage their asthma. The goal of the morning's events was to remind children with asthma that they too can enjoy sports, outdoor activities and especially swimming, which most clinicians believe is the most asthma-friendly exercise there is. Co-sponsored by Children's Hospital Boston, the Boston Asthma Games are just one of a series of events that also includes a day camp and swimming programs geared to children ages 8 to 12 with moderate asthma.

"A number of factors tend to inhibit people with asthma from being as physically active as they could," says Amy Burack, RN, MA, a key organizer of the games and Community Asthma Program manager at Children's. Children, their parents or teachers may fear an asthma attack and hope to head it off by avoiding sports. But what Burack and her colleagues try to teach is that when asthma is well managed, children should be able to participate freely in athletics. In fact, regular physical activity builds lung capacity and stamina, making children better able to handle an attack if it happens. "Nothing is worse for a child than being made to feel different," says Burack, who is an asthmatic herself, "and the games remind them that they don't have to be."

Devon Aulmond has had asthma since he was 2, but after winning a summer-long pass to the YMCA at last year's asthma games, the 8-year old is now an avid swimmer who also enjoys football and basketball. Before attending Boston Asthma Camp, says his mother Lucille, he "would try to act like his asthma didn't exist. He would just play until he couldn't continue." Now he knows to ask for help sooner. "He feels safer, so he enjoys his sports more." Medical staff at asthma camp listened to Devon and taught him to recognize the difference between his allergies and his asthma, how to use his medication, and how to recognize and address his early symptoms. "When he visits his doctor," says Lucille, "they might ask how he feels, but they don't have the time to ask how he feels when he thinks something's happening."

Partnering with the community

Asthma is the # 1 chronic disease affecting children in the U.S. 185,000 children in Massachusetts have asthma, an estimated 7,000 in Boston public schools alone.

Started in 2002 by the Boston Urban Asthma Coalition (BUAC), the Boston Asthma Games are now part of the Asthma Health Project, a joint venture of Children's and the Boston Public Health Commission (BPHC). Hosted by the Roxbury Family YMCA, other games participants include the American Lung Association, Boston Public Schools, Boston Medical Center and Northeastern University's Center for Sport in Society. GlaxoSmithKline pharmaceutical company and Blue Cross Blue Shield also contributed to this year's event, which drew over 130 residents of Boston neighborhoods. The broad-based collaboration illustrates the approach taken by the hospital, as it aims to find a role that encourages and supports partnership with community-based organizations while making the best use of the hospital's special resources.

The key, says Toby Donenfeld, director of Community Health Ventures in Children's Office of Child Advocacy (OCA), is to "try and bring the hospital's expertise to the community and the community's expertise to the hospital." Medical staff only see children for a short period of time, while parents, teachers and coaches provide continuing care and information about health.

One example is the way the hospital has approached partnering with the Roxbury Boys and Girls Club. Listening to what staff felt they needed, Burack designed a training on how to recognize signs and symptoms of asthma and when to take action. The presentation provided "simple, down to earth information," says Greg Stoddard, a social worker at the club. Stoddard said they followed up with a "fabulous" roundtable discussion where parents were able to talk with representatives of Boston's Inspectional Services Department, the BUAC and other asthma-related community groups. Children's is in the process of making similar training available to other Boys and Girls Clubs, as well as community centers, daycare providers and Head Start programs through a partnership with WGBH, Boston's public broadcasting station.

Leveraging resources
Physical activity is only one small piece of the asthma puzzle. Statewide, Massachusetts has an average of four asthma hospitalizations per 1000 people. In Roxbury, the average is 19 per 1000 people. The baseline asthma rate nationally is under 10 percent, while at one Boston public housing development, 40 percent of adults and 56 percent of children surveyed reported having asthma. Environmental factors, poor housing stock, school maintenance, school staffing problems, and access to healthcare all play a role in causing and exacerbating asthma in cities.

Asthma accounts for 14 million lost school days in the U.S. annually and is the leading cause of hospitalization at Children's.

There may be little that Children's can do to address some of those problems directly, but the hospital puts its credibility, staff and other resources behind initiatives that show promise for change. By supporting community-based organizations such as the BUAC and the Asthma Regional Council, and working with public agencies such as the BPHC, Children's has helped advocate for improved construction standards in public housing, better data collection, and changes in how insurers cover asthma education and medication.

Of course, asthma is only one of the many community health problems Children's takes on. Injury prevention, mental health, access to health care, fitness, and nutrition are also central to the hospital's mission to improve the lives of children and their families. In all cases, Children's strives to respect the culture, experience and wisdom of the communities they serve, asking first what is needed, and then working with the community to make a real difference.