UVM Medical Center Education, Support Programs Prepare Patients and Caregivers for Life After a Stroke

Burlington, VT – When Nikki Juvan’s husband, Trent Campbell, suffered his first diagnosed stroke in 2018, the family assumed it would also be his last.

Campbell, an award-winning photojournalist, and Juvan, a kindergarten teacher, also knew their lives were about to change. Campbell spent a month in inpatient care at University of Vermont Medical Center and inpatient rehabilitation at Fanny Allen. He returned home with physical limitations – like needing a walker to get around – but also information and a plan.

After his care team discovered evidence Campbell had suffered a stroke prior to 2018 – the result of uncontrolled diabetes, high blood pressure, cholesterol and other factors – Campbell focused on changing his habits to reduce his risk of another stroke.

With the help of Juvan’s cooking, Campbell changed his diet, focused on improving his mobility and eventually “graduated” from needing a walker to using a cane to get around. Routine tests monitoring his blood pressure, cholesterol and other stroke-related risk factors all came back “excellent,” said Juvan. Campbell and Juvan started talking about his return to work.

Those plans came to an abrupt halt in March of 2019. Less than a year after his first diagnosed stroke, Campbell suffered another – this one attributed to Atrial fibrillation (AFib).

AFib is caused by fast and irregular beats in the upper chambers of a person’s heart. It can increase a person’s risk of stroke by slowing the flow of blood through the heart, which can lead to blood clots. Clots can cause a stroke if they block blood flow to the brain.

The impacts from Campbell’s 2018 stroke had been significant and long-lasting. Despite the progress he had already made, this time they were even worse. One of Campbell’s vocal cords was partially paralyzed and he developed aspiration pneumonia, which required him to be put on a feeding tube for a period of time. Campbell was often so weak that he was unable to get out of bed.

“It really caught us out of the blue and was a much more challenging recovery for Trent,” said Juvan. “But ultimately, he came home and we settled into our new normal.”

While a return to work was no longer on the table, Campbell, Juvan and her daughter, Hannah, focused on leaning into the new rhythm their life was finding. Campbell, by then attending an adult day center in Middlebury, was determined not to retreat from the world or let his limitations define his life.

Then, in March of 2022, Campbell had yet another stroke. Juvan, by this time keenly-attuned to any warning signs or symptoms, had noticed one Friday afternoon that he was a bit off-balance. She took him to the Emergency Department at UVM Health Network – Porter Medical Center, where an MRI the following Monday confirmed that he had experienced another stroke. The cause of that stroke remains unknown, said Juvan.

“We’ve been on quite the journey,” she said of the impact the extended ordeal has had on her family. “It’s incredibly difficult: isolating, exhausting, scary. But I also really found this passion for stroke education and advocacy and trying to help other caregivers.”

Education and Support

As the region’s population has simultaneously grown and aged, stroke care and rehabilitation teams at UVM Medical Center have had to respond to two phenomena in tension: more stroke patients and fewer acute inpatient rehabilitation beds available to help ease their transition home after a hospital stay.

Nancy Malhotra, APRN, SCRN, GS-C, the nurse practitioner who leads the hospital’s stroke educationinitiatives, said being discharged directly home instead of to a rehabilitation program can have a significant impact on both patients and those who care for them every day.

“Many times, both patients and caregivers feel they don’t know what to expect when they go home,” she said. “And what we are seeing is that more and more patients are being discharged directly to home.”

In early 2025, a UVM Medical Center grant was awarded to Malhotra and the Nursing team on McClure 5. The purpose of this grant was for the development and implementation of a stroke caregiver training program, specifically those stroke patients that are discharged directly to home.

The funds were used to purchase tools and resources that assist in patient and caregiver education. Some of these resources consisted of unit-based video tablets that caretakers can use to view evidence-based educational materials. Families are also provided hard-copy informational books and list of community resources to assist in their transition from acute hospital care to home.

Education, pre-discharge planning and training are only a portion of what is needed to support stroke patients and their families, said Malhotra. Often, so much focus is on the patient that those around them – those they depend upon every day – blur into the background. Caregivers often neglect their own self-care needs and end up with their own health crisis.

“A brain injury can be socially devastating to a caregiver, because they feel isolated,” said Malhotra. “They feel they’re alone and don’t have resources or the ability to connect.”

Connection and Understanding

Juvan’s own experience as a caregiver has been traumatic – but it has also awakened a passion she has for helping others who care for individuals who have suffered a stroke.

“I have learned so much not only about strokes, but about how the medical system works – and insurance and Medicare and disability,” she said. “If I can help somebody else who is starting out, then that’s really what I want to do.”

In 2023, Juvan and Hannah founded Stroke Awareness Vermont. Their goal is to create a one-stop-shop of stroke education information, resources for patients and caregivers, the ability to connect with others who are going through similar experiences, and share the stories of stroke patients and caregivers.

Juvan’s vision for an interconnected and widespread community surrounding stroke caregivers took another giant step forward earlier this month. In mid-May, a Stroke Caregiver Peer Support Group hosted through UVM Medical Center held its first meeting at Fanny Allen. Juvan, who is leading the group’s efforts, said she wants to bring a variety of ideas she’s seen used by support groups from other states.

“It’s important to be able to focus on specific topics that folks are looking for help with, but also just give people a chance to express their challenges and their successes,” she said. “My hope is that the group can really become a source of comfort and support.”

Those interested in joining the group, which meets in person but also offers a Zoom option to support caregivers who aren’t able to leave their loved ones or make time to attend in-person, should contact Juvan via email at nikkijuvan [at] gmail.com (nikkijuvan[at]gmail[dot]com).