Critical care nurse Mary Lynn Brown and former hospice nurse Sandy Mixer wanted to learn how University of Tennessee, Knoxville, resources could serve rural communities well. They knew from past research that remaining at home to die is important in rural Appalachia, yet exhausted caretakers rarely get the help they need. So in January 2015, the two UT College of Nursing faculty members drove to rural Scott County, Tennessee, to visit with community members and ask them what they needed.
“They are the experts on what they need,” Mixer said. “We listened.” Together with community members, they decided to co-create a local education program about palliative and end-of-life care.
Their initial meetings blossomed over time into “breaking bread,” as Mixer put it, at the local senior citizen center. Everyone came with a story—miscarrying a baby, receiving a terminal cancer diagnosis, losing someone too young.
“All of these stories gave us a different lens,” Mixer said. “We realized we could not focus only on caring for the elderly.”
Scott County pastor and retired respiratory therapist Wayne King had recently lost his two-month-old grandson to SIDS. “I brought all of this to the table as I participated in developing this program,” he said. “Professional interest from being in health care, vocational interest from being in ministry, and having experienced death in my family, I had a personal interest in this, too.”
Over the next four years, Mixer and Brown worked closely with King, senior citizens center director Kathy Rose, and board member Cheryl Calhoun. Together, they created resources tailored for rural communities and a “train the trainer” course called Honoring Life’s Journey. The expertise built into this program has equipped trusted community members, including pastors like King, to help their families, friends, and neighbors learn the benefits of end-of-life care.
Though this program may have been the first of its kind in the community, it is one of many programs the College of Nursing has initiated to reach out to underserved areas in the region.
Presence and partnerships
For more than two decades, the College of Nursing has taken a leading role in understanding why health conditions are the way they are in the region and how practitioners can intervene. “Opportunities to be healthy can differ based on where you live,” said College of Nursing Dean Victoria Niederhauser. “Our college’s vision of ‘leading care, creating partnerships, improving health’ is a simple statement, but it’s not simple to do in rural and underserved communities of Appalachia.”
The college’s researchers, educators, and practitioners know that fulfilling this vision across both urban and rural areas requires listening closely to community members, building collaborative relationships, and being willing to stay awhile.
Nan Gaylord, an associate dean in the college, helped found the innovative, interprofessional Vine School Health Center 25 years ago. She believes deeply in the importance of nurturing community partnerships over time. “True partnerships are not formed quickly, or quickly finished,” she said. “Even when our physical presence is not long term, the impact should be.”
“The bottom line,” Niederhauser said, “is that our nurses and faculty step in and step up whenever they are needed. That is an important part of leadership.”
Ripples of impact
“The end-of-life care program is a tremendous asset to our community,” said King, who has comforted and counseled local families for nearly 40 years in both medical and ministerial roles. “It is instrumental in helping alleviate fears about hospice and end of life. That helps people prepare and make that component of their lives more fulfilling.”
Soon after going through the Honoring Life’s Journey course, the hospice experience hit close to home for King’s family. “We called hospice in for my wife’s mother. It was very comforting for my wife, which was comforting for me. She had help to guide her through this process. They were phenomenal.”
Mixer and Brown invited King to speak about Honoring Life’s Journey to their students. “Understanding empathy is so important for a new nurse, especially in end-of-life care,” King said. “Some of those students were going to other rural areas for clinicals, and they could use things learned from this program.”
Brown also rewrote the example scenario she uses to teach students about end-of-life decision making. “If the wife in the scenario were from Scott County, she would not take her husband off life support so quickly as I had originally written,” she said. Now, Brown uses it to talk about the importance of “meeting people where they are.”
“Sandy and Mary Lynn have loved on our community, and that was a big part of how the program was received,” King said. “The respect was mutual on both sides. It was an honor for them to allow us to be part of it—and I know they would say that we allowed them.”
Over time, the community partners took full ownership of the program, and Mixer and Brown turned their attention to disseminating what they had learned in Scott County. They’ve presented their work nationally and internationally, providing a template for other rural communities to use.
“We dropped our rock in the creek, so to speak, by bringing university resources and ideas,” Brown said. “Our rock goes into the creek, but the ripples go on and on.”
Expanding access
The relationships Mixer and Brown cultivated in Scott County led to another partnership in a very different field of health care: pediatrics.
Scott County had no dedicated pediatric care provider, and Gaylord saw a way to fill this need. Working with Mixer and Brown’s established contacts there, she was able to connect with Mountain People’s Health Councils (MPHC) Inc., which operates multiple clinics serving Scott and surrounding counties. Together, they developed a plan for Vine School Health Center (VSHC) to provide part-time pediatric nursing services at an MPHC location.
Nurse practitioner and clinical faculty member Alicia Alexander had cared for Knox County children through VSHC for 10 years. For two of those years, she also saw patients twice a week in Scott County. “I felt like I was back with my people,” she said, referring to her rural West Virginia roots. “It felt almost like home.”
In October 2020, Alexander joined the newly opened MPHC pediatric clinic as a full-time provider. “It was hard to leave Vine,” she said. “But I was needed in Scott County. The people here are hardworking and kind, and a lot of them feel like they get lost in the shuffle. That just can’t happen when it’s a child’s health and development involved.”
For many families, every hour-plus drive to their children’s Knoxville specialists meant figuring out gas money, childcare, and time off from work. It could mean lost wages and sometimes involved navigating icy or flooded roadways.
Minimizing trips to Knoxville became Alexander’s first goal for the new clinic. She worked closely with Larry Rogers, the collaborating pediatrician for MPHC and VSHC, to purchase diagnostic tools that provide easier access to routine health care.
One such tool was a hearing screening machine. “Children born in NICU [neonatal intensive care units] need hearing follow-ups at six, 12, 24 months, and so on. Now, families don’t have to travel for those,” Alexander said. “I coordinate with Knoxville providers by sending them reports.”
Alexander also consults with mental health providers and a dental office to coordinate care. This interprofessional approach—modeled after VSHC’s unique combination of physical, mental, and behavioral services—improves the likelihood of positive health outcomes.
“My pie in the sky goal is having developmental/behavioral assessment days, drawing on a variety of specialists,” she said, citing the area’s high incidence rate of autism, developmental delays, and other disorders.
Alexander continues to train UT nursing students at the Scott County clinic. “They get to understand roadblocks to health care in a rural setting, how to help people get services they need without feeling overwhelmed.”
“I believe it’s so important to remember and not discount rural communities,” Alexander said. “They deserve equal access to good nursing care.”
Powerful stories
Marissa Bunch had been a pediatric nurse practitioner for nearly a decade when she started her PhD at the College of Nursing. Her dissertation, A narrative analysis of Appalachian caregiver experiences bed-sharing with their infants, flowed directly out of conversations with her patients.
“Official recommendations tell providers to advise against all bed-sharing, yet the majority of my patients were bed-sharing with their infants anyway,” Bunch said. She began reading up on the topic and noticed a gap in the data: no studies represented caregivers in rural Southern or South-Central Appalachia.
Bunch designed her dissertation research within that gap. Shortly before the pandemic hit East Tennessee, she visited 12 participants in their homes and used an analytical method called narrative inquiry to learn about their bed-sharing experiences. This method involves storytelling—a tradition deeply rooted in Appalachian culture, Bunch pointed out—and honors individual perspectives.
One particular visit stood out to her: shoes off, coffee in hand, Bunch and the participant talked for more than two hours about “everything she thought and felt about mothering, her birth stories, and her fears.”
“Her narrative was powerful and rich,” Bunch said. “Even though I didn’t agree with many things she said, I felt a warmness between us.”
Each participant recounted their health care provider’s lack of support for bed-sharing—but no one had stopped in the face of disapproval.
Bunch’s research highlighted two ongoing challenges: providers need to better understand how to connect with families in culturally relevant ways and families need to access realistic guidance for safely sharing close proximity with their infants.
“Many participants felt better equipped to determine the best course of action for their family versus professionals,” Bunch said. It came down to trust, with some citing ulterior motives like greed or control that could sway official medical recommendations.
These participants often felt unheard and voiced gratitude at the chance to “place their viewpoints within the realm of practitioners,” Bunch said.
Gratitude was a two-way street. “They opened themselves up to me so generously,” Bunch said. She realized the courage and creativity required to listen well to other perspectives. “It was eye-opening and rewarding. I am extremely grateful.”
Positive guidance
Sadie Hutson, who chaired Bunch’s dissertation committee, serves in many roles: associate dean of academic affairs in the College of Nursing, senior advisor for psychosocial studies in the National Cancer Institute’s Clinical Genetics Branch, and director/sole practitioner of the cancer genetics program at Pikeville Medical Center in eastern Kentucky.
As a researcher and nurse practitioner, Hutson is focused on the social, psychological, and physical consequences of living with an inherited risk of developing cancer. In Pikeville, her work takes on an additional layer: how underserved community members navigate these circumstances.
For 11 years, Hutson has provided rural Appalachian residents with the many elements of clinical cancer genetic assessment: assessing personal and family risk, evaluating which family members are candidates for genetic testing, ordering tests, and disclosing results.
Hutson continues the journey with patients who test positive for “cancer predisposition” genes. As their nurse practitioner, she coordinates screenings, lab work, and connecting with the right surgeons for risk-reducing surgical procedures.
She also follows up with biological family members for testing after she supports the patient in deciding how to share the news with those at risk. Hutson stresses that she can advise, but all decisions are the patients’.
“I’ve seen a patient test positive for a gene variant and then tell their family they tested negative so their parents wouldn’t feel guilty about passing it down,” Hutson recalled. Survivor guilt can affect other patients who learn they’re the only member of their family who didn’t inherit the gene.
Regardless of a patient’s test results, it’s a vulnerable place to be. “They need to feel safe. I honor the value of a conversation with my patients to understand where they’re at and what they understand,” Hutson said. “I tailor complex information, so they feel knowledgeable enough to make an informed decision about steps to take.”
Navigating the health care system can be overwhelming for many, so Hutson focuses on empowering people to expect good health by giving them information. “Knowing is empowering,” Hutson said. “Even if a cancer diagnosis comes, we’re doing everything we can to catch it earlier than we otherwise would.
“It’s a privilege to interact with people on this level,” she said. “As a UT representative, I’m so proud to bring expertise to this community. Caring is at the heart of what we do. When you care, you’re invested in always making things better.”
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CONTACT:
Kara Clark (865-9749498, kmclark2@utk.edu)