Workshops teach caregivers, those with chronic disease to ’Live Well’

CHAMPAIGN, Ill. -- Living with a chronic disease, or being a caretaker for a loved one in failing health, can be frustrating as well as emotionally and physically draining.

 “I was able to visit my parents often while I was on sabbatical at the University of California-Los Angeles in the fall of 2008, and it was really taxing,“ said Tim Garrow, a professor in the department of food science and human nutrition at the University of Illinois. “I saw firsthand how old age, chronic disease and chronic pain are tough to manage.”

Last fall, when the UI Wellness Center advertised a workshop series for caregivers and for people with chronic health conditions who wanted help managing their symptoms, Garrow registered for it, hoping he could learn how to help his 84-year-old father deal with pain caused by spinal stenosis. Garrow’s mother died in April 2009 after a protracted battle with dementia.

The workshop, called “Live Well Be Well,” is based on the Chronic Disease
Self-Management Program developed by Kate Lorig at the Stanford University School of Medicine. The program helps adults effectively manage symptoms such as pain, fatigue, stress and anxiety/depression through strategies such as communication, medication, healthy eating and exercise. Participants also lend support to one another by sharing their experiences and problem solving.

The researchers at Stanford developed and tested the program with more than 1,000 people who had heart disease and other conditions. People who completed the program reported significant improvements in their general health, increased their activity levels and decreased their medical costs, undergoing fewer hospitalizations, shorter inpatient stays and fewer outpatient visits, the researchers found.

“This is a wonderful evidence-based health and wellness program for anyone age 18 and over who deals with the daily hassles of one or more ongoing conditions - anything from asthma and allergies or skin problems to more serious conditions such as heart disease, diabetes, cancer, arthritis and cardiovascular disease,” said the program’s director, Laura Payne, a specialist with U. of I. Extension and a faculty member in the department of recreation, sport and tourism in the College of Applied Health Sciences.

Regardless of the type of health problem they or their care recipients have, participants discover that they share many commonalities, such as frustration with their physical limitations and abilities to perform daily tasks.

“People with chronic conditions often feel shame and are isolated, feeling that no one could possibly understand what they’re going through, especially their families and friends,” Payne said. “Once they come together and start working together... there’s this feeling of relief and hope that comes up from the group. They realize they’re not alone and that there are things they can do to take charge of their health.”

During a post-workshop focus group in one community, a participant disclosed that the Live Well Be Well program had helped him grapple with a debilitating depression triggered by health problems that forced him to give up his job - and left him considering suicide. Through the workshop, he had developed a technique that helped him exercise greater control over his mood - snapping a rubber band that he wore around his wrist when he found himself engaging in negative thinking, a technique that other participants adopted after seeing how it helped him, Payne said.

“I believe this program has probably saved many people’s lives, to tell you the truth,” Payne said.

At each session participants develop short-term action plans to achieve desired goals, such as increasing their physical activity levels or finding tools that help them comply with medication regimens. Participants’ goals need not be health-related, and people who are caregivers often set self-care goals, such as taking time to read or take a walk, said Jamie Kleiss, a 4-H youth development educator with Extension, who led workshops at the U. of I., Clark-Lindsey Village in Urbana and Prairie Village in Rantoul during her previous position as an Extension health educator.

Each week, participants discuss progress they’ve made toward their goals or obstacles they’ve encountered. If they need help, they can ask the group to brainstorm and offer suggestions for overcoming stumbling blocks.

“The workshop focuses on behavioral modification - how do you modify your behavior to improve your quality of life, to do what you know you need to do and that the doctor says you should do,” Garrow said. “The action plan (teaches you to set) realistic goals. We practiced that every week and that tool probably had the most impact for the group as a whole.”

Listening to people at the workshops talk about their battles with pain helped Garrow develop empathy and patience for his father. Although Garrow said that his father is “a pretty good self manager” with most aspects of his health, he needed help with the emotional and psychological aspects of his condition - primarily, acceptance that his pain will never be “cured,” although there are techniques that can help him manage it better.

Pairs of trained facilitators lead the workshops - usually health professionals or Extension leaders in conjunction with a lay person who has one or more chronic conditions.  Garrow said his professional and personal interests in nutrition, fitness and wellness, as well as his experiences caring for his parents, prompted him to go through the four-day training program to become a facilitator.

The U. of I. Extension began offering Live Well Be Well in 2007 and now provides it in nearly every county in Illinois. It’s also available across the U.S. and internationally through other partnering organizations.

The UI Wellness Center plans two workshop series on campus this fall - one for faculty and staff members and another for students, said Michele Guerra, the director of the center. The dates for the workshops will be determined by prospective participants’ availability, although the Wellness Center would like to hold them as early as possible this fall.

Participants will meet two hours weekly for six weeks plus a follow-up session. The series costs $60, but employees are eligible for a $20 reimbursement if they attend at least five of the sessions. Retirees and spouses or partners of employees may enroll, but they are not eligible for the reimbursement.

To register for the workshops, call 244-2205 or email ui-wellness [a] illinois (p) edu.