In the face of great tragedy, having the courage to publicly share our personal experiences of loss and healing can have an impact far greater than we could ever imagine. Not only does sharing provide a means to soothe others who are suffering through related experiences, but our stories have the power to inspire individuals and unite communities in pursuit of a solution to our pain.
It's a heartfelt truth that nursing student Meghan Landry '21 can confirm. As she was growing up, Landry's family kept a copy of the book Waiting With Gabriel: A Story of Cherishing a Baby's Brief Life (2003) close at hand. The book was authored by Amy Kuebelbeck, a close family friend, who wrote about her son's diagnosis in utero with hypoplastic left heart syndrome (HLHS), a rare congenital heart defect.
Fatal without surgical intervention, care decisions for parents of children waiting with this condition include perinatal hospice or multiple open-heart surgeries performed during the first few years of life. Surgical survival rates are often unclear and the children face lifelong medical implications with increased need for cardiac transplantation in their future.
While recent surgical advances of cherishing continue to bring hope to some families a baby's brief life with HLHS diagnoses, Kuebelbeck's family chose perinatal hospice and palliative care for their child. Her book describes the family's experience with his impending birth, subsequent passing, and their cherished time with him.
Called to Scholarship
Landry read the book when she was 10 years old, and the story stayed with her. In the spring of 2018, her first year at St. Kate's, she was attending an interprofessional education forum with fellow nursing student Erica Olson '21. During a presentation by Katie Campbell, PhD, assistant professor of interprofessional education and director of the Women's Health Integrative Research (WHIR) Center, Landry heard that Campbell's doctoral research had focused on HLHS at Mayo Clinic.
With this common interest established, Landry and Olson approached Campbell after the event to ask about applying together for Summer Scholars, a 10-week, collaborative undergraduate research program. Faculty and students jointly prepare and submit an application. Their proposal must demonstrate that the project will provide meaningful, rich experiences for students, and allow them to make a significant contribution to scholarship. Approved projects receive funding through the Collaborative Undergraduate Research program.
Campbell and the students promptly applied for the Summer Scholars 2018 program with a focus on conducting a quality improvement study around the parental experience with HLHS. “It felt like it was meant to be," Landry says. “I felt such an immediate connection to this project. It was perfect, and I wanted to help."
Campbell had previously studied the biomedical side of HLHS at Mayo Clinic, and — as a new mother herself — was motivated to learn more about the maternal experience with HLHS and hopefully improve support for families.
"I was extremely excited because I really wanted to dive deeper into how new mothers experience the interprofessional care team," Campbell says. “This really gave me an opportunity to have time and student support in broadening that line of scholarship at St. Kate's. It also connected back to my work at Mayo Clinic but with a different approach to the same issue of HLHS."
That cross-disciplinary and collaborative origin story brought the project to prominence for Cynthia Norton, PhD, professor of biology and women's studies, and director of Collaborative Undergraduate Research and the Summer Scholars Program. “The fact that the students were involved from the very beginning is special here. They brought a passion for the topic. Dr. Campbell brought her expertise and connection to Mayo Clinic. It all came together very collaboratively."
Their application was accepted into Summer Scholars for 10 weeks of funded research and professional development. The project also was awarded supplemental funding through an Academic Excellence Grant from the Minneapolis-based GHR Foundation, founded in 1965 by Gerald and Henrietta Rauenhorst 49.
Uncovering a Critical Gap in Healthcare
Campbell's previous work in HLHS at Mayo Clinic provided the team with connections and resources to jump start the project, including the addition of her former mentor, Timothy J. Nelson, MD, PhD, director of the Todd and Karen Wanek Family Program for HLHS.
The students and Campbell made regular trips to Mayo Clinic over the summer to meet with Dr. Nelson and his team, and they took turns conducting interviews with 12 clinicians and two mothers of children with HLHS.
"We did many practice interviews. We were all really nervous, especially because we knew we would be talking to doctors that treat children with HLHS and families of children with HLHS - people we wanted to be sensitive with," says Olson. "We did a lot of practice with Katie [Campbell], and Summer Scholars mentors had us give practice presentations to them, too. That really helped us by the time we got there."
Landry encouraged the team to each read Waiting With Gabriel, and Olson and Campbell found the first-hand perspective extremely moving and valuable insight for the project. Campbell cited the book's critical importance in informing interview questions and the shared understanding the team built together throughout the work.
“Amy [Kuebelbeck]'s book helped us learn what trigger phrases we should be listening for in our interviews," Campbell says. "With her perspective, we were able to readily recognize when the clinical staff used these phrases and pick up on their emotional impact on families."
The interviews the team conducted began to reveal common themes: families were often feeling confused, unsupported, and — at times — emotionally abandoned by the care team while their children were being treated for HLHS or going through palliative care. The team presented their findings, "Identifying Gaps in Parental Support for Families With Hypoplastic Left Heart Syndrome," to Dr. Nelson and his colleagues at Mayo Clinic. They were surprised by what they'd heard and motivated to learn more.
"I think this research really highlighted that families feel neglected once we're done with surgeries, and yet there are lifelong wellness and follow-up needs of these families that perhaps we underestimated as a healthcare team," says Dr. Nelson. "That was the specific, meaningful, actionable knowledge that we received through this dedicated effort."
Lisa Dutton, PhD, dean of health sciences in the Henrietta Schmoll School of Health, oversees the GHR grant that funded their work. "This [research] provides students with a unique lens into what it's like for a family — that's something we really value at St. Kate's — thinking about the whole person, their family, and how social context and systems impact health. This particular project really brought that forward by looking at how we can better support these families."
Not only was the team at Mayo Clinic intrigued by the results of their research, but Campbell and the students received high accolades when they presented at the closing session of Summer Scholars in August 2018. Students present their research to each other for peer review and also to the program's community of scholars, including faculty, staff, administrators, parents, alumni, and more.
Both Dr. Nelson's and Campbell's teams realized the importance of validating these themes on a larger scale and continuing the work beyond the 10-week Summer Scholars project. With the generous added support of a GHR Innovation Scholarship grant, the project's funding was extended, and Campbell was able to invite another talented nursing student, Meghan Katers '21, to join the research team in September 2018.
Throughout the 2018-2019 academic year, Campbell and all three nursing students worked closely with Dr. Nelson and the Mayo Clinic team to develop an electronic survey that would confirm gaps in parental support identified through the Summer Scholars work. The students also traveled to present their work at regional research conferences at both Mayo Clinic and the University of Minnesota.
While Olson left the project in spring 2019, she credits the inspiration and energy she found in presenting the work with pointing her education toward public health research. "Through this project, I was able to identify that I love the sense of community and togetherness I felt at conferences where people could relate to one another over common disabilities and diagnoses in their kids," Olson says. “And I absolutely love conducting research. It's a really fascinating part of the science world, and you do a lot of research in public health."
Impressed with the students' findings and the survey instrument they were developing, Dr. Nelson and the Todd and Karen Wanek Family Program for HLHS generously agreed to fund Landry and Katers for another 10 weeks of full-time collaboration over the summer of 2019. The continued support allowed Landry and Katers to shift from a qualitative, interview-based study into quantitative research with a goal of further substantiating their findings.
For Dean Dutton, this extramural funding spoke to St. Kate's values and was the natural progression from the GHR funding that she hopes to see. This is a great example of a couple of things: being centered on women's health is in line with our mission, and it's interprofessional," Dutton says. "Our intent is that we are giving students and faculty a start on some of these projects and hopefully that will provide a foundation for future external funding, which was the case in this particular example."
The students soon distributed a detailed survey to families of HLHS patients through social media. Survey questions focused on the parents' experience with and perceptions of support from the HLHS interprofessional care team. The expectations were low, as most of the current family-focused research in the field of HLHS had gathered feedback from between 200 and 400 respondents. "We were hoping for 100 participants," Katers recalls. “Dr. Nelson pushed us to try for more, maybe 200."
They received 690 total responses. The implications were huge for the entire field of HLHS study and other medical research relying on parental feedback and participation.
"When they came back and told me they'd received nearly 700 [responses], I was thoroughly impressed," Dr. Nelson says. "I was blown away by their ability to use social media to engage families across the country and move them into filling out the survey. That's a testament to the students' ability to craft clear questions and frame them in a way that got people engaged even though it's a vulnerable topic."
Campbell was also thrilled by the results. “It was incredibly heartwarming to picture families compelled to contribute back to research so we can support parents going through this process. We had all types of parents, too — mothers who are currently pregnant, parents whose children are deceased, some who chose surgical intervention, and some who chose perinatal hospice care — a variety of perspectives we could learn from."
For the students, it revealed they were making a difference in the world. "It's been mind-blowing to see that things that were just hypotheses — like 'this population isn't supported' — now we actually have statistics to back it up," says Landry.
Katers agrees, "We got so much wonderful information from that. Now we can look at publishing our work to disseminate those findings to the general public or create some kind of intervention to help them.
Changing the Face of Healthcare
Over the past two years, the team has presented their work eight times and counting), including presentations at a pediatric cardiology conference in Kansas City, the 2019 National Conference for Undergraduate Research in Georgia, and Cardiology 2020 in Florida — where their work was selected for an exclusive evening poster session — a podium presentation as one of the top eight nursing abstracts, and as a finalist for the Nurse Scientist Award. Katers' and Landry's attendance, registration fees, and travel has been funded in part through additional GHR travel scholarships and through the generous support of the Todd and Karen Wanek Family Program for HLHS.
"It's impressive how they've grown independently," Campbell says of the students. "And I've watched them realize their expertise on this, build their confidence, and present to an audience with authority and clarity. It was a good experience for them to discuss something they were not studying in coursework with professionalism and confidence."
With a continuation of funding from the Wanek Program through the 2019-2020 academic year, the next step in the project will be planning a parental support intervention for families going through the HLHS care process at Mayo Clinic. Landry and Katers are already planning to focus on testing the efficacy of that intervention through the 2020-2021 academic year as part of a joint senior honors project for the Antonian Honors Program. They both hope the intervention will be an opportunity to affect real change for families on their journey with HLHS.
Campbell is proud of the work they've done together — but even more proud of the students. "I can't say enough about these students, their motivation, and their determination to see this through. What I thought was going to be a three-month project has turned into more than two years. I don't know if I would have had the time or resources to move it forward if the students weren't asking to continue. Their continued commitment has been really exciting."
Dr. Nelson views student-sponsored research as a potential solution to the many issues facing the healthcare system today. "I don't think young people firmly realize the impact they can have in research projects like this. This project was a perfect example of student-inspired healthcare that really challenged assumptions and pushed things forward in a way that we wouldn't have done ourselves, perhaps," he says.
"This program St. Kate's has created and the leadership of Dr. Campbell and these students makes me optimistic that we can tackle bigger and bigger problems with healthcare in the future. They've essentially created a platform that allows us to dream, and I think it's the tip of a much bigger iceberg of possibilities."
by Lindsey Frey Palmquist, from St. Catherine University Magazine Spring 2020 issue