How a nursing perspective plus a scientific approach can refine patient care

STANFORD, Calif., Feb. 11, 2019 /PRNewswire/ -- When Kimberly Pyke-Grimm, PhD, began studying how teens and young adults with cancer make decisions about their medical care, her years as a pediatric-oncology nurse shaped her research. So did her years as a mother of three.

"I feel strongly about contributing to child health because two of my children were born with heart disease," she said. "I want to be making a difference in giving other children the best care because my children received it."

A pediatric oncology nurse for more than 30 years, Pyke-Grimm recently earned a PhD in nursing and today, she is one of two nurse-scientists working at Lucile Packard Children's Hospital Stanford. Her work is part of a larger trend in which more nurses are conducting clinical research, bringing their unique perspective from the front lines of clinical care to the research enterprise.

"In addition to maintaining their own body of research, our nurse-scientists support the development of future scientists, help our bedside nurses evaluate clinical questions and practice changes, and offer training to our nurses across the organization," said Kelly Johnson, PhD, RN,  vice president of patient care services and chief nursing officer at Packard Children's. "It's really important to have that resource for the support of our clinical program and advancement of our scientific programs. It fits in with our organization's strategic plan and our model of nursing excellence."

Pyke-Grimm now devotes 40 percent of her time to research at Packard Children's and 60 percent to patient care as a clinical nurse specialist at the hospital's Bass Center for Childhood Cancer and Blood Diseases. Her work includes the responsibilities and routines of any scientist: identifying good research questions, seeking funding, carrying out and publishing studies, and mentoring junior investigators. But she is doing all of that through the lens of a nurse.

At home in research
When Pyke-Grimm began working in pediatric oncology, she was struck by the painful uncertainties families faced as they made treatment choices for their children. Parents might agonize over whether to enroll a young child in a clinical trial, grapple with the choice between different cancer treatments, or battle complicated feelings while deciding on end-of-life care.

"As a bedside nurse, I really bore witness to them struggling to make some of those decisions," Pyke-Grimm said.

In 1988, Pyke-Grimm and her husband, Paul Grimm, MD, now a pediatric nephrologist at Packard Children's, relocated from their home in Canada to Southern California, where they both attended the University of California-Los Angeles. He completed a fellowship in pediatric transplant immunology, and she earned a masters' degree in nursing, an experience that hooked her on nursing research. When the couple moved to Winnipeg, Canada, in 1991, Pyke-Grimm collaborated with Lesley Degner, PhD, a professor of nursing at the University of Manitoba. Degner studied decision-making in adults with cancer. Together, she and Pyke-Grimm extended these investigations to parents of young kids with cancer.

"I was so very fortunate, working with Lesley," Pyke-Grimm said. "I felt like, 'This is my home, decision-making research.'"

During the 1990s, Pyke-Grimm published studies showing that, while most parents wanted to collaborate with their child's oncologists to make treatment decisions, some preferred more passive or active roles. Furthermore, the information parents wanted from their doctors varied with their decision-making style. For instance, the most active decision-makers needed the most information about possible treatment side effects.

The findings can help caregivers tailor medical discussions to families' individual needs when making decisions about their child's treatment. It's one example of how research conducted by nurses can refine patient care.

"Nurses think about the human response to things because we spend so much time with patients in very desperate and stressful situations," Pyke-Grimm said. "Almost every day that I work as a clinical nurse specialist, I think 'We should study that!' or 'Why is it we're doing it this way?'"

Helping teens, young adults with cancer
Pyke-Grimm and her family, which now included three children, moved to the Bay Area in 2007. She began working at Stanford in 2011 and started pursuing a PhD the following year. She continued to study decision-making, including that of Packard Children's patients, but focused her dissertation on teens and young adults with cancer; they face a unique set of challenges.

"Their survival rates have not kept pace with their older and younger peers," Pyke-Grimm said. "We also know this age group is not as adherent with their medication; their nonadherence rates are reported at 20 to 60 percent." These young people may also have trouble balancing their medical needs with worries about how much to rely on their parents, returning to school after illness, changes to their bodies and maintaining friendships.

"We hope that if we work on decision making, communication and self-management, there will be opportunities to increase their adherence to treatment, and maybe even increase enrollment in clinical trials and improve survival rates," Pyke-Grimm said. Her work, which has uncovered information about what types of decisions teens want to be involved in, is now being submitted for publication. One of the next steps, she said, is to test decision-making interventions based on what she has learned to see if they improve patient outcomes.

Integrating research into culture of healing
"If we're looking at the safest and best practices for patient care, nurses are uniquely positioned to do that because of how we interact with the whole medical team, as well as with patients and families," Johnson said, adding that Pyke-Grimm's work fits into a larger research goals being pursued by Packard Children's nurse scientists on the impact of healing environments on patient outcomes.

Pyke-Grimm is inspired by the research collaborations she's forged with Stanford experts from a variety of backgrounds, including specialists in pediatric oncology, precision health, adolescent medicine and palliative care.

"It is such a rich environment," Pyke-Grimm said. "Having colleagues like that just down the hall, who are excited about research and will say, 'We really need to look at this; there's a gap here,' is pretty amazing."

She is encouraging the careers of junior nurse-scientists, mentoring a fellow in evidence-based practice, and working to bring more nurses into her research projects. And she is a resource for nurses who are wondering if they want to add a research element to their careers.

"I tell them that this is making a difference in a different way," she said. "It's not instant gratification like patient care, where you might give pain meds, and a patient's pain quickly goes from an 8 out of 10 to a 2 out of 10. Research is a long process, but the benefits can be huge. It can really make a difference to how we give care in the future."

About Stanford Children's Health and Lucile Packard Children's Hospital Stanford
Stanford Children's Health, with Lucile Packard Children's Hospital Stanford at its center, is the Bay Area's largest health care system exclusively dedicated to children and expectant mothers. As a top-ranked children's hospital by U.S. News & World Report, we are a leader in providing world-class, nurturing care and achieving extraordinary outcomes in every pediatric and obstetric specialty. Stanford Children's Health provides everything from specialty care to general pediatrics and can be accessed through more than 60 locations across Northern California and 100 locations in the U.S. western region. As the pediatric and obstetric teaching hospital for the world-renowned Stanford University School of Medicine, we're cultivating the next generation of medical professionals and are at the forefront of scientific research to improve children's health outcomes around the world. We are a nonprofit organization committed to supporting the community through meaningful outreach programs and services and providing necessary medical care to families, regardless of their ability to pay. Discover more at stanfordchildrens.org.

Media Contact:
Samantha Beal
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SOURCE Lucile Packard Children’s Hospital Stanford

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