Millions of Americans survive critical illness each year. Just because they survive does not mean they immediately return to the lives they lived before being sick. In fact, many face new challenges—physical, emotional, social and psychological—once they leave the intensive care unit (ICU) that can take months or years to overcome.
Some survivors need to relearn how to walk. Others struggle with following everyday routines. Still more lose their self-esteem.
The process is a drain on patients and those closest to them.
In 2010, the Society of Critical Care Medicine (SCCM) classified these new challenges to the brain, body and emotions as post-intensive care syndrome (PICS). PICS presents itself in more than half of critical illness survivors. This is why SCCM launched the THRIVE initiative in 2015 to raise awareness about this impacted population.
THRIVE aims to help patients and families impacted by critical illness flourish. At the same time, the hope is to advance the industry’s knowledge, understanding and support of patients’ lives post-ICU.
This industry advancement will happen in large part thanks to the THRIVE Peer Support Collaborative, one of four components to the initiative. The other three are the THRIVE Research Grant to Accelerate Recovery, the THRIVE Innovation Award and the ICU Heroes Award. The Collaborative offers grants to help hospitals develop a network of in-person support groups that link survivors of critical illness and their families.
There are currently 17 THRIVE sites spread across the country and around the world. THRIVE Peer Support Collaborative members discuss their organizational activities with one another—what has and has not worked, what challenges they face and what they hope to accomplish.
There are commonalities that exist across programs, but where the value lies is the differences and the lessons learned that are shared across the network.
“We are now part of an extended community of people who are all pulling together in the same direction,” said Dr. James Jackson, assistant director of the ICU Recovery Center at Vanderbilt University, one of the first THRIVE locations. “We’ve received a lot of education and emotional support while realizing we share a common cause.”
Spotting the Demand
Dr. Jackson and his Vanderbilt colleagues discovered the need for patient support post-ICU thanks in large part to a colleague who had a critical illness of her own. The colleague’s son had authored a book on critical care. Her daughter-in-law was a critical care nurse. Yet despite the medical knowledge present in the family, they struggled with countless problems and questions.
It was at this point that a team at the Vanderbilt University Medical Center began to examine life after the ICU. They asked former patients about their experiences. How did they feel returning home? Did they get the needed support?
“The patients were starting to tell us they had this very intensive care in the ICU, and then as soon as they were well enough to leave the hospital, they felt their care ended and their support ended,” said Carla Sevin, director of Vanderbilt’s ICU Recovery Center. “Especially for the family members, this was isolating and crushing, because now they were charged with taking care of somebody who, in most cases, was very debilitated.”
The family members had few guidelines.
They had no support.
They felt they were alone.
Based on the feedback, the ICU Recovery Center at Vanderbilt was established in 2011 to help improve the post-ICU period for patients and families. An ICU followup clinic was started in 2012.
The team continued talking with those impacted by PICS. Some family members were paired with other survivors’ families to gain support from someone experiencing similar challenges.
The interest in that type of support quickly grew.
“There was so much demand for it,” Sevin said, “that we felt getting everybody together in a room would be helpful to the patients, as well as the family members.”
The Vanderbilt team felt survivors could help one another by sharing their stories, their hopes, their concerns and their accomplishments. So, in 2015, a support group for ICU survivors and their families was established.
The impact, Jackson says, is striking.
“We’ve seen some pretty clear changes in the lives of some of the folks who attend the group,” he said. “Some of them seem to be rewriting their narrative. We’ve seen people who have decided to get healthier and lose considerable amounts of weight. We’ve seen people who have decided to reenter the workforce after a long hiatus because they’re more confident.”
Sevin and Jackson are the first to admit their established model may not be perfect. Patients and family members may benefit more by being in separate groups. Survivors months removed from the ICU often have different concerns than someone just days or weeks into the post-ICU recovery process.
The team is learning as it goes.
“You don’t have to have it all together before you start out in this ICU support process,” Jackson said. “We were perhaps among the first groups of people to start focusing on the aftercare of ICU survivors, and we didn’t have all
our i’s dotted and t’s crossed. That didn’t prevent us from starting the clinic and support group. If you wait until everything is perfect, you’ll never get started.”
While Jackson is excited to share his experiences with THRIVE Collaborative members, he is equally thrilled by the inspiration gained from the other participants. “Being a part of THRIVE has really motivated us,” Jackson said. “It’s galvanized us to continue doing what we’re doing.”
Joanne McPeake also saw a need for a post-ICU support group—she just happened to be on the other side of the Atlantic Ocean from the Vanderbilt team.
As a clinical research fellow at the Glasgow Royal Infirmary in Scotland, McPeake witnessed a number of clinical care patients leaving the ICU with newfound obstacles and concerns. McPeake, an experienced ICU nurse with a PhD in long-term outcomes from critical care, wanted to help. She had never been treated in the ICU, though, and she felt she could not fully relate to the issues ICU survivors face.
If she wanted to help, she was going to need help.
Thanks to patients and caregivers, research data, and a multidisciplinary team that included McPeake, a pharmacist and a physiotherapist, the Glasgow Royal Infirmary was able to launch InS:PIRE.
InS:PIRE stands for Intensive Care Syndrome: Promoting Independence and Return to Employment. Launched in 2014, InS:PIRE is a five-week program that offers a cohort of critical illness survivors and caregivers one hour per week of group physiotherapy. The goal is to provide peer support and encourage individuals to share their experiences.
Each week is structured. During the first three weeks, attendees meet with individual members of the multidisciplinary team. The medical staff provides high-level overviews of what happened during individuals’ critical illness, answers questions and sets personal goals to establish how InS:PIRE can help facilitate recovery. The pharmacist educates attendees about medications and provides medicine management information. The physiotherapy session focuses on physical recovery.
The fourth week of the program focuses on psychology, specifically coping strategies and expected responses from critical illness. The fifth week includes visits from a dietician and local community groups. The groups offer advice on a wide variety of topics, from financial and housing advice to fitness groups and volunteer opportunities.
What makes InS:PIRE so impactful is its reliance on patient and caregiver volunteers who are further along the recovery trajectory. The program’s leadership team is made up of four staff members and one patient or caregiver. Former patients run the program’s social cafe, which constantly puts them in front of current patients and family members and reinforces the peer support model.
More than anything, these volunteers provide a beacon of hope to current patients and their loved ones.
“As a nurse, me saying you’ll be better in a year doesn’t mean anything,” McPeake said. “To have someone who can say, ‘I know exactly what you’re feeling, and you will get better,’ that’s much more inspirational for patients.”
Approximately 100 critical illness survivors have gone through InS:PIRE so far. That number will greatly increase thanks to new funding from the Scottish government and the Health Foundation charity that will help InS:PIRE launch in five more centers throughout Scotland. McPeake estimates that InS:PIRE will see approximately 400 survivors and 300 caregivers in the next two years.
As part of the funding, an independent evaluation team will assess the expansion process. McPeake is eager to share that assessment and more with her new colleagues within the THRIVE Peer Support Collaborative, many of whom she met for the first time this past October in Chicago during a THRIVE Collaborative meeting.
“It was fantastic learning about the international perspective of peer support in critical care,” McPeake said. “Continued networking and shared learning will help ensure that our program in Scotland grows.”
Gaining New Knowledge
While the Vanderbilt team is focused on ongoing support groups, and the Scotland team operates under a timespecific structure, the Harborview Medical Center at the University of Washington is aiming to combine multiple methods of support.
In September 2015, Harborview launched its own THRIVE Peer Support Group for patients recovering from critical illness. That same year, the Center joined Vanderbilt as one of the first six members of the national THRIVE network.
Like their fellow network members, the staff leaders at Harborview quickly understood the importance of survivor perspectives—so much so that a survivor steering committee was established to drive the program’s patient-centered goals and outcomes.
The combination of support approaches was proposed by critical illness survivors who were on the program’s survivor steering committee. The committee members decided they wanted to have peer-to-peer mentorship opportunities, a larger group meeting and access to adaptive activities.
Aaron Bunnell, who is the medical director of consult at Harborview, explained that the rest of the program’s leadership team was confident in these approaches in large part because of the successes each method had with other populations at Harborview, from individuals who had traumatic brain or spinal cord injuries to those who were burned or had amputations.
“On the surface, critical illness doesn’t look like those,” Bunnell said, “but the truth is that people come out of critical illness with very similar levels of deficits.”
Some people may not be able to go to the bathroom on their own, Bunnell explained. Others may be dealing with a new lifestyle, one that doesn’t include the job they used to have, the sport they used to play or the friends they used to have.
“You can imagine it’s very difficult to cope with,” Bunnell said. “You need information on how to cope.”
That is why the THRIVE Peer Support Group was created. The mentorship and group meetings enable patients recently discharged from the ICU to hear about the highs and lows from other critical illness survivors.
“Patients who have walked that road get a certain knowledge of how to travel it that a physician can’t have,” Bunnell said. “There’s something about talking to somesomebody who’s traveled the road that you’re traveling.”
The adaptive activities, on the other hand, allow survivors to augment therapy and still engage in an interactive group setting. So far the THRIVE Group has offered adaptive yoga and rowing, and is now looking to add additional types of community outings, such as attending a Seattle Mariners baseball game together.
The process has not been seamless, Bunnell confessed. Organizing the steering committee took longer than expected. The logistics of bringing outside individuals into the hospital was more challenging than he initially realized. But the team is learning. And when they ran into issues—like when they initially struggled to recruit for the survivor steering committee—they turned to their colleagues in the THRIVE network.
“The knowledge that’s shared among sites is great,” Bunnell said. “Some of the sites are really inspiring. They’ve created interesting programs that we’re trying to emulate.”
to read a web-only exclusive centered on a patient’s positive experience with a support group for critical illness survivors.