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Virtual Stroke Club: Survivors, Caregivers and Care Team Welcome

UW Medicine’s stroke support groups transformed during COVID-19 from in-person, hospital-based support groups to a virtual collaborative effort by the stroke centers across our organization.

“Stroke Club,” a name that transitioned from Valley Medical Center’s in-person support group, is now being offered every second Tuesday of the month and is co-led by staff from the Comprehensive Stroke Center at Harborview, UW Medical Center – Montlake and Northwest, as well as Stroke Rehabilitation Valley Medical Center.

The program supports stroke survivors and caregivers in recovery and transition in life after a stroke.

Community led

Hosted by UW Medicine’s stroke centers, the meetings are led by community participants — stroke survivors and caregivers from all over our region. Although UW Medicine moderators and care team members are present, the discussion is determined and directed by the community participants.

“We facilitate and guide, but we don’t lead the meeting,” says Anna Callen, BSN, RN, CCRN, the stroke program manager at Harborview. “Although we do try and have special guests at each meeting.”

Last month, Callen says they had a Pilates teacher as the special guest to discuss mind and small muscle connection and lead a 20-minute exercise. This May, the special guest will be a stroke survivor and nurse that had a stroke during their work shift.

The Stroke Club co-leaders bring in speakers and topics that are requested by participants or try and find speakers that are relatable or have a unique perspective.

“Participants don’t want to attend a conference, they want to create connection and see if they have things in common,” says Callen.

At the meetings Callen or another moderator will lead activities on self-love and compassion, start a sharing session for fears and feelings, and help create space for participants to talk where they feel safe and supported.

As a nurse and manager, when I attend these, it gets really deep,” says Callen. “Sometimes people share experiences about how they were treated in the hospital and it can help us improve our care.”

For Callen, listening to patient experiences helps inform her patient education and care practices. She encourages other stroke care team members to attend and learn more about the stroke patient experience.

Open to all with no expectations

People attend Stroke Club for many reasons and at different stages of their care. Stroke effects vary from person to person and in severity. A stroke can cause impairments in speech, movement, vision and cognitive abilities like memory or reasoning.

Callen says for some patients the reality of having a stroke doesn’t align with their expectations, and it can be the same for caregivers who have to take on a bigger role in the life of a loved one than they expected — sometimes even having to give up their job.

“Having a stroke is life changing, and I think to be able to connect with other people who have managed to survive, have achieved victories in their personal health or have found a new purpose in life can be helpful and hopeful,” says Tammie English, RN, SCRN, a stroke resource nurse.

Stroke Club is also a “no pressure” situation. Participants can join at any time, in any phase of their post-stroke care and can even join with video off and microphone muted if it makes them feel comfortable.

“A lot of people feel shy, but magical things happen in these groups,” says Callen. “I learn a lot as a person, a healthcare professional and program manager.”

Connecting more people

Transitioning the support programs to Zoom has also allowed more people to participate by reducing transportation barriers.

“Many patients come from out of the area and are even from other states and some don’t have access to these types of support resources, but with Zoom they do,” says English.

English thinks that in the future, Stroke Club will continue on Zoom with opportunities for in-person meetings as well. Zoom can be a more convenient way to participate, but she doesn’t discount the value of face-to-face peer support and hopes that eventually the program will be able to accommodate both.

Leading with the heart

What stands out in this stroke support program is the focus on emotional support.

“People can better identify and show support with peers, so we felt it was important to be focused on emotional support and to have stroke survivors be the face of the group. We just provide the platform,” says English.

Callen notes that it also reduces the power imbalance between experts and patients when patients lead and are the focus of the meeting.

“It creates more trust for participants knowing that this person gets me and is here to learn about me knowing I have deficits,” says Callen. 

Stroke awareness

Both Callen and English have been working in stroke or neurology programs for the majority of their hospital careers and are committed to providing top-tier stroke care and education.

“The brain is fascinating and unpredictable. When you see people recover it is so rewarding,” says English.

“If you are fast and efficient in response to a stroke, we can save everyone’s life,” says Callen. “I have seen it many times and that is why I love my job.”

They both emphasize the importance of knowing the signs of stroke:

“Time is brain tissue. If you recognize anyone having stroke symptoms, call 911 right away,” says English. “The difference is death and lifelong deficits — every second matters.” 

“Feel empowered to say, ‘I think this person is having a stroke,’” says Callen. “Trust your gut feeling, call 911 or call a ‘code stroke,’ and always be FAST!”

Join Stroke Club

The next Stroke Club meeting will be on May 11 from 6-7 p.m. You can join the Zoom meeting via this link: https://uw-phi.zoom.us/j/96968133718 .

This is a recurring meeting every second Tuesday of the month:

  • Odd months (January, March, May, July, September and November): 6-7 p.m.
  • Even months (February, April, June, August, October, December): noon-1 p.m.

Stroke Club meetings are also listed on The Huddle event calendar.

Questions? Call 206.744.3975 or email stroke@uw.edu.

Learn more about stroke warning signs, recovery and prevention at stroke.org


Photo caption: kkgas / Stocksy United


 

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