Feature The Value of Patients Sharing Experiences Last month, PT in Motion looked at the value of physical therapists sharing experiences among themselves.1 This month, we examine the roles PTs can play in creating and enhancing patient support groups. By Michele Wojciechowski | April 2017 In 2005, Carol Zehnacker, PT, DPT, founded a support and exercise group for people with osteoporosis. Not only was the condition the focus of her doctorate's capstone project, but she, too, has osteoporosis. She started the group after she realized that her patients needed more extensive weight-bearing exercise in order to build bone. Under the guidance of Zehnacker, owner of Maryland-based Physical Therapy Consultants, LLC, the group meets every 2 weeks. "While we're doing weight-bearing exercises, we're talking and sharing information," she says. The session incorporates physical activities, such as balance work, that are specifically designed for people with osteoporosis. But the group—all of them women—also may share a pertinent newspaper article, relevant information from their physician, and related experiences from their daily life. "Group members are bright and inquisitive. They question some of the things their physicians have told them. There definitely is an educational component," says Zehnacker, who is certified by APTA's Academy of Geriatric Physical Therapy as an exercise expert in advanced aging, and also is a personal trainer. "As a physical therapist," she adds, "I share my experiences and expertise—what I've learned through research and working with other patients." The meetings, Zehnacker says, help her "know when something is wrong—if a participant's gait is altered, if she's having difficulty lifting items, or she's experiencing musculoskeletal issues. In those instances," she says, "I'll suggest that the person come in for a physical therapy consult. Then, I'll do an evaluation and go from there. When 1 group member had breast cancer, for example, she came to me after her mastectomy, because she trusts me from my involvement with the group. I helped her with her frozen shoulder." Members of the support group educate not only one another, but her as well, Zehnacker emphasizes. "I learn and they learn," she says. "It's a very positive experience." June Melvin has been a member of Zehnacker's support and exercise group for about 10 years. She joined it, she says, because she appreciated the fact that Zehnacker has a doctorate in physical therapy and a special interest in osteoporosis. "I reasoned that if I could start doing the correct exercises, I might be able to avoid going on medication for osteoporosis," she says. "I contacted Carol and told her that my mom had osteoporosis. If I could stave it off by doing physical exercises, that was what I wanted to do." "It's a great gang of women," Melvin continues. "We talk a lot. If I see something in a health newsletter that's related to osteoporosis, I'll take it in for us to discuss. Sometimes Carol will have seen it. In other cases, she hasn't and looks into it further. It's really a give-and-take atmosphere. We all want to stay healthy. We're all friends now. Carol finds a way to get us going in the same direction so that we're all gaining something from the group." Doing It All In some instances, physical therapists (PTs) do much more than oversee support groups. A case in point is the Parkinson disease (PD) support group started in 2015 by Rose Babcock, PT, DPT, at Select Physical Therapy in the Orlando, Florida, area. She facilitates the monthly meetings, finds and introduces guest speakers, and recruits new members. (For more information on how to establish a support group for patients, see "Starting a Support Group" on page 20.) Because Babcock's father has PD, she had raised funds for the Michael J. Fox Foundation. One of her friends from "Team Fox" ran a nearby support group and asked her if she'd ever considered starting one. She ran with the idea. Like Zehnacker, Babcock has found the group to be beneficial to all participants, herself included. "People with PD don't know what to expect," she notes. "Attending these meetings, they meet other folks who have the disease, and see how it affects them. They discover resources. A few of my folks have found a neurologist as a result of others' suggestions," says Babcock. "A number of them have decided to see a movement disorder specialist based on other group members' experiences." Sharing can produce presentation topics. One member of the PD group talked about how taking tai chi helped her. Babcock then developed a presentation on the subject. A few other members of the group now attend that same tai chi class. "The support group really empowers the patients," Babcock observes. "The socialization that happens with a group like this is great," she says. "When you get diagnosed with PD, you might not know anyone else with the disease, so you don't know what to expect. You hear technical terminology from your physician and have no idea what it means. When you attend a meeting like this, however, you meet others who have PD, you learn from them, and you connect with community resources. Some participants have become friends, and they look forward to seeing each other." Thanks to the group, Babcock has gained insights into the experiences of her father and mother-in-law, who also has PD. "I learn so much from spending time with group members and hearing their stories," she says. "It helps me treat my own relatives more effectively." Lloyd Geier has PD, and he and his wife Arlene attend Babcock's support group meetings. There's an intense feeling of camaraderie, because, he says, "We're all in the same boat." At the meetings, the couple learn about exercises that help manage the disease. They learn other things, too. At 1 meeting, a participant showed the group his shirt. The "buttons" actually were magnets, which made it much easier for that person to put on the shirt. That Christmas, "Our kids got Lloyd a couple of them," Arlene reports. "We'd never heard about them before." Small-Group Mentality Mike Eisenhart, PT, managing partner of New Jersey-based Pro-Activity Associates, says his practice always has focused, in part, on small groups of people who have something in common. He and his staff emphasize preventing illness or disease through fitness programs and by educating businesses. Whatever form a support groups takes, the key to success is socialization, Eisenhart says. "We are hardwired to be social creatures. Our behaviors are influenced by the people around us. It's how we learn. Almost every habit we adopt comes from having watched someone else do it. That social connection," he emphasizes, "makes a major difference in people's care." For example, Eisenhart recently spoke to a group of construction workers at a particular company. They already share key elements of a support group, he notes, because they face the same danger of sustaining similar injuries. Eisenhart has talked with them about how to stay healthy so they're less likely to become injured. He and other Pro-Activity staff return as frequently as once a week to talk with the group, giving lectures and engaging conversations. The workers ask questions, receive assessments when needed, and exchange information. "We are influencing the culture of the workplace by getting them together to explore their beliefs about the risks they face," Eisenhart says. He and his colleagues then build intervention programs based on workers' specific needs. Pro-Activity also administers a community-based athletic club. People are assigned to groups based on their needs. In some cases, Eisenhart brings in other health care personnel—physicians, nurses, personal trainers. "The patients network among themselves. I often walk in to hear a group member telling another group member what he or she did to help resolve a particular issue," Eisenhart says. "That's a very powerful human thing that we all do. If we can connect with these groups, tell them how we can add to their experience while making sure they don't get hurt, and get them all the information they need, the results are going to be even better. Our model emphasizes education and prevention." Frank Batiste wanted to qualify for the Boston Marathon. Even though he had been involved with running groups, he felt he needed an additional push. So, he joined a fitness group at Pro-Activity Associates. "The group energy makes doing the workouts a lot easier than it would be trying to do it on my own at home," he says. "Now I look forward to it." Batiste recalls that when he failed to qualify for the iconic race, group members were supportive, sending him text messages that encouraged him to try again. "It's something I really needed to hear," Batiste says. He didn't give up, and he recently qualified to run in next year's Boston Marathon. Empowerment Carol Dionne, PT, DPT, PhD, agrees with Babcock's statement about the empowerment that support groups offer patients. Dionne, an associate professor in rehab sciences and director of the rehabilitation sciences postprofessional programs at the University of Oklahoma's Health Sciences Center, works a great deal with people with limb loss. "Though support groups, they learn they are not alone," she says. "They learn that they can act as a group to advocate for insurance coverage for prosthetics, physical therapy and occupational therapy, and return-to-work with or without restrictions. They learn that in a variety of senses—political, community, and personal—they have a support network of friends." After a traumatic accident in her late teens, Maureen Simmonds, PT, PhD, experienced chronic pain. Later, as a professor in the Department of Physical Therapy at University of Texas Health in San Antonio, she encountered support groups through her research. Support groups for people with chronic pain have a long history, she notes. She began studying them in the 1980s. "Problems of people who have chronic pain often aren't addressed within traditional health care," she says. "So, it's especially important that people whose pain-related issues are more obscure or less understood get group feedback. People in the groups with which I've worked have been highly active and engaged. They share tips for each other, advocate as a group for additional research on their condition, and lobby for more education about chronic pain among health care professionals." "It's about trying to help others help themselves," Simmonds continues. "Support group members learn how to problem-solve. They pick up from others how to deal with issues they face on a day-to-day basis. Support group members help affirm and assure each other that issues associated with chronic pain are real. Everyone's experiencing them. They're not imaginary or overstated." Helping the Profession PTs' involvement with patient support groups also helps the physical therapy profession as a whole, say those interviewed for this article. Members of her PD group, Babcock says, often bring in family members or friends who don't have the disease. They learn more about physical therapy just by being there. "It makes patients, family members, and friends more aware of the services PTs provide and how they can access them," Babcock says. Some support group members have asked if family or friends with movement issues can schedule an appointment. "It helps build dialogue and trust. The folks within my support group come back to me for physical therapy whenever they need it." "Support groups also show the community that you're involved," Zehnacker notes. "The fact that you run a support group enhances the way people in your local area perceive PTs. Participants in your group talk with other people about what you're doing, and your reputation is enhanced and expanded. People find out about your expertise. While you haven't set out to market yourself, you've done just that." "We should engage in the community to a greater extent than we do," Dionne says, and involvement with patient support groups is a means to that end. "Even in this technological age, the jewel of being a physical therapist is our interpersonal relationships with patients. When we enhance that interaction, we benefit both patients and ourselves."Starting a Support GroupWant to start your own patient support group? Consider these steps:Be Interested in the Condition That Unites the Group: PTs should have a vested interested in the condition, says Carol Zehnacker, PT, DPT. "It has to be a passion of yours. You can't just say, ‘All these people have shoulder injuries. I'll start a support group.' It needs to be something in which you're interested."Narrow Your Focus: Rose Babcock, PT, DPT, says it's impossible to tailor a support group to everyone with the condition. So, know your target members and market to them. For example, she specifically enlists older people with Parkinson disease.Do Your Research: Before starting her own support group, Babcock quizzed a friend who runs one. She also asked people within and outside her company who lead support groups for insights and advice. She visited support groups to see firsthand how they operated. She also searched online to see which topics other support groups cover, which they avoid, and why.Use Your Resources: Babcock reached out to coworkers, friends, and even interns who were doing their clinicals at her facility. Through them, she identified speakers, topics, and presentation subjects. One tip: She encourages her interns to do presentations to give them experience. Market, Market, Market: Because you need to have enough people to form the support group, marketing is important, Zehnacker says. In addition to reaching out to patients, contact key individuals and groups in the community, APTA, and other health care associations. Tell as many people as you can who have the condition, or who may know someone who does.