Ronni Dixie had three cavities filled last month — without any freezing. She just breathed her way through the discomfort, using techniques she’d learned through an online mind-body wellness program called EMPOWER for people with chronic health conditions.
“My mind used to go 900 miles an hour. I couldn’t sit still, not for any medical reason, it just wasn’t what I did,” recalls Dixie, a retired teacher in Red Deer, Alta. “Then I started the EMPOWER program and I practised breathing and meditation every day.”
“All of a sudden, I could stop what I was doing and focus. I can centre myself.”
EMPOWER is a 12-week program developed at the University of Alberta that offers online content, coaching and classes in breathing, meditation, tai chi and yoga, along with coping skills such as pacing, sleep hygiene and self-compassion for people living with chronic conditions. There are videos and talks by medical experts and group movement sessions. Participants can choose which elements they wish to participate in but are encouraged to do at least 90 minutes per week.
EMPOWER is led by hepatologist Puneeta Tandon, professor of medicine, and her research team members, who originally evaluated it in people living with inflammatory bowel disease, then refined it for patients with primary biliary cholangitis.
“As clinicians, we deal very well with organ-specific issues, but addressing the whole person and the mind-body connection is just as important,” Tandon explains. “People living with chronic illness experience a lot of stress but they face a lack of access to professional resources. We developed EMPOWER to fill that gap.”
Continuous improvement
A clinical trial of the online program is now recruiting participants with 10 chronic conditions — digestive diseases, cirrhosis, primary biliary cholangitis, primary sclerosing cholangitis, chronic kidney disease, heart failure, post-organ transplant, inflammatory bowel disease, post-cancer treatment and a general group for those living with any other chronic condition. Of the team’s goal of 750 participants, 550 have already signed up. Patients or clinicians interested in referring patients can get more information by emailing empower@ualberta.ca.
“I like to think of EMPOWER as the best of the East and the best of the West coming together so people can learn from all of these evidence-based strategies,” says Tandon. “In our previous studies, we have seen significant reductions in stress, depression and anxiety, and even improvements in fatigue depending upon how much the patients do the program.”
“The more they do, the more benefits they get.”
The average age of participants is 60, but they range from 18 into their 90s, according to PhD student Emily Johnson. Anyone with a computer and internet access can participate, and technical support is provided. The fitness components range from low-intensity movements done in a chair to more vigorous levels of yoga and tai chi.
“There’s all sorts of people and all sorts of abilities involved,” says Johnson. ”There’s something for everyone.”
Building healthy habits
Dixie has suffered from primary biliary cholangitis for about two decades, along with several other autoimmune disorders. In 2017 she received a liver transplant from a living donor, her nephew Anthony Germain. After participating in the EMPOWER program, she still finds yoga challenging but does breathing and meditation every day. She feels stronger, has better balance and feels more hopeful.
“I went off work before I was 50 because of my illness and I thought, ‘I’m not going to make 50,’ Dixie recalls. “Here I am at 60 and I’m looking at 70. And that’s not a pie-in-the-sky thing.
“I think the program works because it teaches you how to calm yourself. Chronic illness can be very disruptive to your life. Now I can be calm in just about any situation,” she says.
Mike Willis had just retired from his job with a plumbing/HVAC company in Guelph, Ont., when he caught a virus that left his heart with debilitating scar tissue. He received a heart transplant and will now take anti-rejection medications that make his hands shake for the rest of his life. He can’t solder amateur radio parts anymore, but thanks to the EMPOWER program, he has better balance and concentration, and is feeling calmer. And he’s hooked on tai chi.
“A lot of people with a heart problem think, ‘I can’t exercise, that’s dangerous,’” Willis says. “But this starts you off slow and you do what feels right for your body. If you’re having a rough day, you can sit and relax, concentrate on your breath and everything just sort of settles down.”
“It gets to be a habit and it’s a great habit to have!”
Patient input is key
Tandon gives much of the credit for the project’s impact to its patient advisory team.
“We rely on having that patient voice at the centre of everything we do,” she says.
The current study seeks to delve into that patient experience with questionnaires and in-depth interviews with people who have completed the program. The goal is to understand what support they need to turn their new skills into daily habits. In general, Tandon reports that only five per cent of people who download health apps keep using them for a month or longer, so it’s a big hurdle to overcome.
“Techniques like breathwork make you feel good very quickly but with so much going on in life, they still require effort to build into a regular routine,” says Tandon. “We’ve heard it from our participants — once they do it regularly enough to get almost addicted to the feel-good part, those people are more likely to continue, but it doesn’t necessarily happen in the first week.”
Participants in the study are randomly assigned to one of two intervention groups or a waitlist control group that will do the program later. One intervention group gets the online program and access to group sessions once or twice a week. The second group also gets a weekly 15-minute phone call from a student trained in a technique called motivational interviewing, who gets feedback and encourages the participant to continue their progress with the program.
“This study is about understanding how much help and support people need to make a healthy habit and translate that into benefits,” says Tandon. “We’ve heard from our patients that it can be life-changing to have these skills right in your back pocket to use in times of stress.”
Ronni Dixie has definitely made that leap. She keeps up with her new skills daily and is making plans to travel, something she hasn’t been able to do in years because of her health. She also plays guitar regularly as part of a garage band with friends.
“The EMPOWER program is a game-changer and I’m not kidding,” she says. “It actually helps you to live better.”
The team is grateful to all of the participants, patient partner organizations and researchers who have contributed to developing the program. The current EMPOWER study is funded by the Canadian Institutes of Health Research.