When a family with a seriously ill child is admitted into a hospital, they face a flurry of questions. Insurance paperwork ensues, tests are started and the child is put into pediatric palliative care. It can be overwhelming.
Pediatric palliative care is “one of the most horrific journeys that can be encountered,” says Meghan Walker Potthoff, PhD, BSN’01, APRN-NP, associate professor of nursing. So, she’s researching ways to provide the support a family needs in the hospital.
Potthoff has the opportunity to delve into this important research as the inaugural Lenke Scholar, an endowed research fund in the College of Nursing recently established through the generosity of alumna Beth Tippett Lenke, BSN’86, and her husband, Lawrence Lenke, MD, a spinal surgeon in New York.
The Lenke Scholar is one aspect of the College of Nursing’s new Center for Faculty Innovation, Research and Education (FIRE). The center will support top researchers, experts and visiting scholars who will focus on critical issues in the nursing field.
“The center will build a transformative culture around scholarship that informs faculty efforts for teaching and best practices in patient care,” says College of Nursing Dean Catherine Todero, PhD, BSN’72, RN, FAAN.
For Potthoff, this is taking shape in caring for the whole family unit during the pediatric palliative care journey.
“How we address and meet the parents where they are in their decision-making at different moments in their child’s health care journey is important,” Potthoff says. “We don’t put too much accountability on the parents for their decision, but we also don’t take away the ability to make that decision.”
To do this, Potthoff has adapted a method used for geriatric patients, a card “game” in which parents of children going through palliative care are able to better communicate their needs.
The “game,” Go Wish Pediatrics, is simple. A family member is given a stack of 50 cards and told to prioritize each card into one of three piles: very important to me; somewhat important to me, but maybe not at this time; and not important to me.
Card topics address personal issues, relationships and their child. For example, a card might say “I fear to leave my child at the hospital.” For some parents, this might be a recurring fear. For others, they believe the hospital staff is taking great care of their child, and feel free to go home, for example, to see their other children.
“Parents identified that, if you come to the hospital, and right when you get there, we ask you, ‘What are your needs and your priorities?’ they’re overwhelmed with coming to the hospital, and they can’t think straight,” Potthoff says.
Go Wish Pediatrics requires the family to go through each card, and stop and think, “Is this important to me?”
“It gives them permission to ask about their needs,” Potthoff says. “We’re really here to take care of the whole family unit. It really opened the door of making the interdisciplinary health care team more of a vehicle of resources for the whole family unit versus just a medical provider for the child.”
Potthoff has always considered herself a bedside clinician, and this research allows her to continue to work directly with patients.
“Pediatric palliative care, it’s such a humanistic field,” Potthoff says. “You really have to be interwoven and closely connected with your patients.”
With FIRE, Potthoff has been granted a portion of her time to solely focus on research.
“It’s the first step in establishing a scholarly culture — helping faculty adjust priorities, and moving the Creighton College of Nursing forward,” Todero says.
“The Lenke Scholar appointment really solidified for me, that I have felt a passion to pursue a scholarly trajectory as a researcher in nursing,” Potthoff says.
Other FIRE initiatives include the Distinguished Scholar Lecture. The inaugural address was presented in April by College of Nursing alumna Ann Malone Berger, PhD, BSN’71, APRN, AOCNS, FAAN, associate dean for research, professor and Dorothy Hodges Olson Endowed Chair in Nursing at the University of Nebraska Medical Center.
In her lecture, “Leadership and Role-Modeling to Enhance Nursing Research,” Berger says she sought to give both students and faculty “pearls of wisdom, leading them in a path for their own development and future careers.”
Students will benefit from FIRE in other ways, too. One of the requirements to earn a Doctor of Nursing Practice (DNP) is to complete a quality improvement project. Todero says these students could work directly with Potthoff and other researchers to collaborate on both faculty and student projects.
“You want your nursing education to be cutting-edge; you want faculty who are engaged in discovery of the best ways to treat patients,” Todero says.
Jesuit founder St. Ignatius of Loyola charged his followers to “set the world on fire,” to ignite a passion, to spark a change — a calling that echoed through the generations and continues to find voice and form at Creighton today. The tradition is alive in the College of Nursing’s FIRE Center.
“The point of research is to change practices for the betterment of individuals and society at large,” Beth Lenke says. “Nursing research directly impacts patient care and thus the lives of so many people. To be a part of this initiative at a university level, especially at a place that I believe in and love so much, is a great honor for us.”
Article written by Emily Rust and published in the College of Nursing Progress Report 2018-2019