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September 27th, 2017

Online support group informs, uplifts ICU survivors

By Robin Huiras-Carlson

Muriel Hachfeld, left, with Andrea B. Johnson, who leads a support group for patients with post-intensive care syndrome.

Nearly nine days in spring 2016 are missing from Muriel Hachfeld’s memory. It’s the period of time she spent in the ICU at Mayo Clinic Hospital — Rochester, Methodist Campus, fighting off a septic infection she’d developed following an elective surgery.

Six of those days, she fell into a coma and was unresponsive to stimuli. The time she was conscious also is a murky blur of emotions and hazy memories, says Hachfeld, who lives in Detroit Lakes, Minnesota.

But the nightmares — those she can remember.

“They started right away and they were horrible — the worst dreams I’ve ever had,” says Hachfeld, who required dialysis and was put on a ventilator as part of her care in Mayo Clinic’s ICU.

The nightmares coupled with the gaps in her memory compelled Hachfeld to seek the help of a psychologist.

Professional advice isn’t the only counsel the 68-year-old sought to learn more about the memory lapses, lethargy, and feelings of anxiety and anger — later identified as post-intensive care syndrome — that Hachfeld continued feeling months after her hospital discharge.

She also joined an online support group for patients affected by post-intensive care syndrome.

The support group is a resource for patients with similar experiences to come together and share their thoughts and knowledge. Hachfeld says that knowing the group was there and that other people had similar experiences helped her a great deal.

“Just knowing the group was there helped me, knowing Annie helped me,” she says. “Reading other people’s posts just helped me to see how deeply people can be affected.”

ONLINE SUPPORT GROUPS CONTRIBUTE TO MULTIFACETED OUTREACH

Run through Mayo Clinic’s Division of Critical Care Medicine and coordinated by Andrea B. Johnson, a nurse practitioner in Critical Care, the Post-Intensive Care Syndrome group is supported by a grant from the Society of Critical Care Medicine. The group held its first meeting off-campus in November 2016 at Kutzky Market in Rochester. The group continues meeting there the third Monday of each month at 2 p.m.

Informational material was developed for the post-intensive care syndrome group, and it is highly promoted among ICU patients and their families. But recruiting participants to meet face to face has been problematic, Johnson says.

Mayo Clinic offers dozens of in-person support groups. They range from cancer to bone marrow transplant to bereavement and traumatic brain injury. These groups bring former patients together to share their stories.

But there was a major gap in support resources for patients whose lives were affected by a stay in the ICU, Johnson says.

“Our patients, after they survive critical illness, they may very well never see someone from critical care ever again, so they can’t loop back and ask what happened,” Johnson says. That’s changed with the online support groups, she says.

“Mayo Clinic in Rochester is in a unique situation in that a lot of ICU patients aren’t from here,” Johnson says. “They don’t live here. They don’t stay here after their hospitalization. So it’s hard to get them to come back to a support group after they’ve had a critical illness.”

In response to the fledging group’s struggle to draw people to in-person meetings, Johnson began a collaboration with Shawn Bishop, Public Affairs, and Colleen Young, community director, Mayo Clinic Connect, to develop an online component of the group.

The Post-Intensive Care Syndrome (PICS) page on Mayo Clinic Connect enables people to share their personal stories and chat with others who have had similar experiences. There also are videos and helpful links on the page. Johnson receives help moderating the group from volunteer mentors — members she’s tapped to undergo training and respond to other users’ posts.

Since Jan. 13, when the page went live, about 15 to 20 people have made close to 200 comments on the page and its related discussion thread, Young says.

Sharing stories can be a powerful vehicle toward wellness, especially for patients who have developed post-intensive care syndrome, she says.

“So many feel like they are alone, and they think something is wrong with them,” Johnson says. “Their brains, their bodies — they see that everyone else is recovering — but not them. I had one patient type in, 'I am so glad this has a name, because I thought I was going crazy.'"

CARING COMMUNITIES

The Post-Intensive Care Syndrome (PICS) group is not the only group with an online presence on Mayo Clinic Connect.

Forty online communities exist on the site, says Young, who led the 2015 redesign of Mayo Clinic Connect and its ensuing 2016 relaunch. Each month, about 200,000 people visit the site, and that figure grows every month.

Young says there are many similarities between online support communities and in-person support groups.

"What isn’t parallel is the same people that may sway conversations in person are not the same people that sway conversations online," she says. "It’s a different medium; you have more time to be reflective and respond.”

“You can really see the people take on roles — people that really look out for new members, and make sure they feel welcome and integrated, and some others who are really good at research,” she adds. “They see people coming with questions, they Google it, and bring the information that was requested. Other people just want to say ‘Hi’ and are really chatty and are there just for socialization.”

For Hachfeld, who entered the site to gain insight into her emotions, the online group has provided comfort.

“When the page went up and was started, I would read but I wouldn’t put anything on it,” she says. “It took me a long time before I could feel like I could put anything in there because, and this is still an issue, I was afraid I would get more upset just having to say it online.”

When Hachfeld finally did post to the website, she says the acknowledgement of her feelings and the emotional toll of her ICU experience by others was a sort of catharsis.

“They realized how traumatic this was for me,” she notes. “It does feel good to talk about it.”

Robin Huiras-Carlson is a Communications Specialist at Mayo Clinic. This article first appeared in Mayo Clinic News Center, an intranet publication for Mayo Clinic employees.

Tags: Case Studies, ICU, Mayo Clinic Connect, Patient Involvement, patient support groups, PICS

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