In the 1990s several medical and public-health professionals at Stanford University developed a six-week peer-facilitated workshop designed to equip persons living with chronic medical conditions to manage not only their disease(s) but also the effects of these on their lives and emotions. A foundational assumption of the workshop is that people whose medical diagnoses may vary widely nonetheless share many similar concerns and challenges and can draw on similar resources in meeting them. No matter a person’s specific health condition, he or she needs the knowledge and the skills to manage the illness itself (like taking medication, or making changes in diet or exercise), daily activities (like household chores, jobs, and relationships), and the difficult emotions that are an inevitable part of living with illness (like anger, depression and anxiety).
The participants in the earliest versions of the chronic disease self-management workshop have now been followed by tens of thousands of participants across the country and around the world. In the United States, the program is in use in 50 states. Governmental and non-profit agencies are licensed to train lay leaders and to arrange for the workshop itself to be offered in various community-based settings (like senior centers or doctors’ offices) to groups of ten to twenty participants at a time. The Philadelphia Corporation for Aging (PCA) is one such agency, offering workshops that are aimed primarily at older adults who either live with a chronic disease themselves or are caregivers to someone who does. One workshop was offered at Fairmount Primary Care Center (FPCC) this fall.
The co-facilitators of this workshop were one of FPCC’s behavioral health interns (who has diabetes), and FPCC’s health educator (who cares for a relative who has leukemia). Thus while these leaders both happened to be health professionals, their pertinent qualification for leading the workshop was that they both live with the challenges presented by chronic health concerns. As persons living with chronic illness, they could model coping skills for participants rather than just telling others what to do. Workshop participants themselves were recruited with flyers posted at FPCC and in the surrounding area, inviting all interested parties to join the workshop (which in its PCA version is called "Help Yourself to Health”), and which was scheduled for six consecutive Tuesday mornings from 10:00 AM to 12:30 PM.
The group met in an upstairs conference room at FPCC. A few participants were on time for the first meeting. Most were late. In the end, there were about a dozen people in attendance. A representative of PCA introduced the program and the facilitators, nametags and notepads were distributed, and the workshop began. "What problems do you experience in connection with your chronic condition?” asked one of the facilitators. Everyone spoke at once. The dominant theme was confusion—confusion about medication, diet, pain, why no one at the doctors’ office will answer the phone. The group dynamic could only be described as raucous. I’ve been a classroom teacher for twenty years, and I left that meeting a little shaken. Would I have been able to manage that group? I wasn’t sure.
Each meeting of the workshop included attention both to content and to process. Content areas addressed included all the concerns raised by participants in that first conversation and more—the mind-body connection, breathing, fatigue, communication, depression, advance directives, medical decision-making, navigating the health-care system, planning for the future. Important as all this was, process was at center stage most of the time. Participants were encouraged to articulate their goals, come up with ways to accomplish those goals, make specific plans that would bring them closer to their goals, carry out those plans, identify obstacles that arose, revise their plans accordingly, and celebrate every small success—a little more activity, a little better nutrition, a little more time with friends or restful sleep or positive attitude.
As the weeks went by the group began to settle down. Participants began to understand what was being asked of them when they were invited to identify problems, brainstorm possible solutions, and see new ways through old dilemmas. And the members of the group began to behave less like a crowd and more like a team. In session five, a participant with a usually jovial manner was oddly combative through much of the meeting. Finally he confessed—a close friend was acutely ill, and he felt grief-stricken and helpless. He was near to tears. The group was quiet. Then another group member spoke, recalling a past psychiatric hospitalization and her own feelings of grief and helplessness at that time. Her vulnerability seemed both to contain his tears and to hold out hope for the future: "I got through that; you’ll get through this.”
Eventually the final meeting of the workshop arrived. Everyone was on time. "What things have we learned?” asked one of the facilitators. "What skills have we gained?” Again everyone spoke, but one at a time. "Now when stuff comes up, we know how to deal with it better.” "I can manage some of my pain a different way than I could six weeks ago.” "It’s important not to keep yourself locked in the house. I need to go out and be amongst people.” "I’ve learned that not everything has to be done right away. I can take my time and do it another way. There are alternatives to everything.” "I’ve learned to stand back and watch myself so I don’t get into a blue funk. I can control what I can, and I let the rest go.” "I used to put myself down a lot, saying, ‘I can’t.’ I learned that I can.”
The transformation was extraordinary, from chaos, confusion and helplessness the first week, to order, clarity and self-efficacy the sixth week. In later conversation, one of the facilitators said that this was certainly the greatest degree of change he had witnessed in the several times he had led the workshop. Fair enough—every group is different, and this group was evidently toward one end of the continuum. Still, the lesson to me was clear: never discount the potential for growth and change. Even a little structure, information and encouragement can go a long way toward helping individuals to join with one another in taking small steps that make a big difference. "I wish this class were longer,” one participant said as that final meeting of the workshop drew to a close. "It’s not over,” said someone else. "We’re going to live it every day.”