The Benefits

of Joining a

Support Group

By Colleen Horn

W hen people first find out nebulizers and it was difficult keeping they (or their child) have it all straight. The support group asthma, they can experi- helped by educating me about things

ence a wide range of emotional reac- such as my kids shouldn't be cough- tions. They often feel confused or ing, which nebulizer cup is easier to overwhelmed, recognizing their need use, or the cheapest place to buy mat- to better understand the condition, tress covers." They may feel frightened, angry or alone. One thing that has helped W h y a n E d u c a t i o n a l many people combat the emotions S u p p o r t G r o u p ? and challenges of living with asthma is Typically, there are educational sup- joining an educational support group, port groups for a number of age

"I've had asthma all my life, but I groups of people with asthma and didn't join my first support group allergies: adults, teens, parents of chil- until I had two children with severe dren with asthma, and even some for asthma," says Linda Borschuk of children. There are also groups specif- Phoenix, Maryland. "I finally realized ically for people with food allergies. this was a big deal and there had to be Each group provides its own unique an easier way to do it." Approximately brand of educational support. nine months after Borschuk joined an "Educational support groups education support group, she gave allow individuals at all stages of the birth to her third child, Sam, whose asthma and allergy journey to gather asthma is more severe than that of and cheer each other on," says Nancy either of her older children. Sanker, educational support group

"I'm glad I was educated before director for the Asthma and Allergy Sam came along because it was really Foundation of America (AAFA). hard," she says. "I had three kids on "Nothing is better than having some-

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one who has ventured before offer words of encouragement."

Sanker emphasizes that today's support groups aren't about a group a people sitting around a circle say- ing, "Ain't it awful." She says emo- tional support is an underlying thread that weaves through the group, but quality education is the priority. Asthma medications and management tools are changing rapidly. "It's really up to the patient to stay current," says Sanker. "Educational support groups are the perfect opportunity for you to be on the cutting edge of this new surge of information, meet the health care providers in your community and learn valuable tips from your peers."

S u p p o r t G r o u p s A r e N o t J u s t f o r A d u l t s

Not only do support groups educate and support adults with asthma and parents of kids with asthma, but they can also give children and teens a

valuable sense of belonging. "Since I've been in a support

group, I've learned a lot more about what I can do for myself and about the proper way to take my medica- tions," says Sheila Coopersmith, an 11-year-old with asthma in Fort Collins, Colorado.

In school, children with asthma or allergies may feel isolated because they have to take medication or avoid certain foods. As members of a sup- port group, however, they are sur- rounded by other children with inhalers or food allergies. "It's impor- tant for these children and teens to feel that they are not alone," says Glenn Silber, MD, a physician in Maryland who started a support group for his patients a few years ago.

Teenagers with asthma not only have to manage a chronic illness, but also may have the additional challenge of keeping up with school work, deal- ing with peer pressure and fitting in extracurricular activities. To help teens

deal with those pres- sures, AAFA designed a support group specifical- ly for teens called SAY (Support for Asthmatic Youths). There are about 34 groups nationwide.

W h y D o c t o r s P r e s c r i b e S u p p o r t G r o u p s

Support groups report that many of their new members come from referrals from health care professionals. In fact, some groups were even founded by local physi- cians. " F o r us , w e w e r e

seeing a need that was not being met and patients who were floun- dering," says Dr. Silber. "Support groups provide the patient and the fami- ly time that they don't necessarily have in a busy doctor's office to ask all

their questions." ~grhile a doctor may focus on a patient's individual asthma management plan and medications during an office visit, a support group can provide more general information on long-term control of this condition.

In 1998, AAFA surveyed its edu- cational support groups and found that individuals who attend support group meetings have a greater under- standing of their condition, what trig- gers it and how they must participate in its treatment. They also feel they are better patients. Not only can they better control their condition, but they feel more effective, calm and confident.

"'When my daughter had her first and only anaphylactic reaction, I was ready," says one of AAFA's survey respondents, reflecting upon the time her daughter experienced a severe allergic reaction. "My EpiPen was in place, and I didn't hesitate [to use it] because my support group had had many discussions on 'when to pull the trigger.'"

The majority of survey respon- dents who had been attending an asthma support group reported that they noticed a decline in asthma episodes requiring unscheduled doc- tor or hospital visits and fewer disrup- tions due to asthma at work, school or during sleep.

Fi l l ing t h e T i m e

Support groups report that they have no difficulty getting health care pro- fessionals or other experts to speak at their meetings. Members say their guest speakers include allergists; pul- monologists; ear, nose and throat specialists; researchers; asthmatic athletes and nutritionists. "You usu- ally find all your speakers through word of mouth, from a referral from your doctor or from someone you respect," says Borschuk.

Often Speakers are sought to dis- cuss specific issues. One group brought in a behavioral psychologist to talk about helping children with asthma not feel "different." Another

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group asked a disability lawyer to dis- cuss the rights of a person with a chronic disease. "These are things we couldn't do in the doctor's office," says Dr. Silber.

P o w e r in N u m b e r s

There's truth to the saying, "there is strength in numbers." Together, many support group members have been able to influence positive changes in their communities. They have joined together to fight various issues that cause problems for people with asth- ma and allergies. For example, two parent activists whose children attend the same school decided to join together to approach the school prin- cipal about changing regulations pro- hibiting children from carrying med- ications, such as inhalers and EpiPens, in school. In Massachusetts, parent activists have launched a statewide effort to require a school nurse in every school.

G e t t i n g t h e W o r d O u t

Offer the community something it needs and they will come. But some- times it may take a little effort to spread the word about a support group meeting. Many child-focused groups send flyers to school nurses or

day care centers. Some groups place notices in the local newspapers or in newsletters of patient advocacy groups, such as the local chapters of the American Lung Association (ALA) or AAFA. One group in Maryland has a poster that has a regular spot on the wall at Johns Hopkins Medical Center's Pulmonary Clinic.

F i n d i n g a S u p p o r t G r o u p

One of the easiest ways to find a sup- port group is through your health care provider. Since many support groups seek local health care profes- sionals as medical advisors or speak- ers, your health care provider may be familiar with a group in your area. If not, call AAFA or your local ALA office to find out if they know a group in your area. (See sidebar above for phone numbers.) On the ALA Web site, there is a listing of the local programs that ALA sponsors, includ- ing support groups. (Go to www.lun- gusa.org, then click on local ALA and then the state in which you live.)

S t a r t i n g a S u p p o r t G r o u p

If you are unable to find a support group that meets your needs, you may want to start your own. A support group may start with only a few people

and grow as the word gets out. Though the schedule of meetings varies from group to group, holding meetings once a month or every other month is typi- cal. The meetings may be held in vari- ous locations depending on the size of the group, the tone you want to set and convenience for the naembers. Many groups hold their meetings in a physician's office after hours, rooms that can be reserved at the local library or in members' homes. (See sidebar for more tips on starting an educational support group in your community.)

Whether you join an existing group or start a new one, the poten- tial benefits are the same. It is a won- derful opportunity to learn about asthma with others and from others who face similar challenges. Take the initiative to get involved. And take some advice from Dr. Silber who says, "In order to have a successful support group, the most important thing you need is dedicated leaders."

Colleen Horn is the media and public relations manager for the Asthma and Allergy Foundation of America (AAFA), an organization dedicated to providing information, education and support to people with asthma and allergies.

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