Post-transplant perspectives: How MCHRI supports research for clinician educator to improve the quality of care for patients and their families
Monday, April 8, 2019
By Roxanna Van Norman
As one of the nurse scientists working at the Lucile Packard Children’s Hospital Stanford, Annette Nasr, RN, PhD, knows how important funding is to advance her nursing career while still pursuing her passion in research. She recently received the Clinician Educator (CE) award through the Stanford Maternal and Child Health Research Institute (MCHRI), which supports clinical educators like her who conduct clinical research focused in maternal or child health.
For a nurse with a doctorate, working in both the hospital and an academic setting is unique. “To be faculty in the School of Medicine is a privilege and an honor; we are just beginning to see nurses with PhDs receiving academic appointments in the School of Medicine, which is very exciting,” Dr. Nasr says. Those aspects are important in moving nursing research forward, she notes, especially when nurse scientists have the expertise to design and conduct independent research as well as understand how to improve the quality of patient care through translation of research to the bedside.
I see this funding as a huge step for nursing here at Stanford and for me professionally as I am able to move my research forward.
“For MCHRI to open this funding source to healthcare professionals other than physicians is a really great opportunity,” says Dr. Nasr, who is a clinical associate professor in the Division of Gastroenterology in the Department of Pediatrics at the Stanford University School of Medicine. She also serves as a voting member on the Human Subjects Research and Institutional Review Board (IRB) committee within the Stanford Research Compliance Office, where she provides her perspective as both a faculty and a nurse on research and ethics matters.
The MCHRI focuses on emerging leaders and researchers in maternal or child health, and through the CE Grant Program, which provides up to $35,000 of funding for clinician educators, this mechanism helps Dr. Nasr move along the trajectory of her clinical and research career. “I see this funding as a huge step for nursing here at Stanford and for me professionally as I am able to move my research forward. Internal funding is very challenging as a nurse due to the fact we do not have a school of nursing on the Stanford campus,” she notes.
Dr. Nasr believes her role as a nurse provides a unique perspective to her other role as a researcher. “It is important for us to remember that nursing is a science, and similar to any other science, we need to create new, generalizable knowledge and fill gaps in current literature,” she points out. “Nurses are professionals; they are at the bedside 24/7 and are at the frontline.”
As a pediatric nurse for over 30 years, Dr. Nasr has been focusing on creating a healing environment for patients and families. She works at the Pediatric Transplant Center as an Independent Donor Advocate for patients who are thinking about donating one of their kidneys or a lobe of their liver to someone else – a family member, a friend, or who just want to donate.
For children, Dr. Nasr understands receiving an organ from a parent is a life-changing event and wants to provide more than just hospital resources for patients and families during the donation process. She wants to share insights from families who have gone through the same process, backed by findings from her study on parents’ and children’s experiences with the organ donation process and the long-term emotional impact for them and their families. Very little research has been done in this area.
Understanding the impact, sharing the experiences
Dr. Nasr became interested in studying the emotional effects of being a living donor while working as a liver transplant coordinator at the Children’s Hospital from 1995 to1999. “I came to the point of my professional career that I wanted to seek some answers to questions that I was finding in my clinical area,” she explains. That fueled her interest to look into living donation and the long-term impact for both the donors and the recipients.
She received initial funding from MCHRI in 2009 to study the long-term impact of living liver transplantation in pediatric patients and their families through a predecessor program of today’s CE Grant mechanism. She also received another grant in 2012 for a separate study that looked at the effects of medication administration efforts on nurse’s practice behaviors and outcomes. In total, she was awarded $40,588 to fund these innovative pilot studies.
I’m curious [to know] how they grow up and become adults. How does that work within the family, and the relationships, and the bonds that occur?
Dr. Nasr’s 2010 study explored the emotional experiences of parents who donated a portion of their liver to their child. Three major categories emerged from the interviews she conducted: self-awareness process, a clarification of familial relationships, and a change in perspectives on community. The overarching theme that was constructed from the interviews suggested that the impact the donation had on the donors’ lives was one of transformation.
She then became interested in children’s experiences and how that affected their well-being as they grew up. “A large percentage of the kids that we do transplant here at Stanford [receive] transplants very young because they’re born with something and weren’t aware of the transplant process,” she says. “I’m curious [to know] how they grow up and become adults. How does that work within the family, and the relationships, and the bonds that occur?”
She led another follow-up study and interviewed the children (now a few years older at this time) who received the liver donation from the parents about their own perspective from the process and “what is it like to be a recipient of a living donor from your parent.”
That study, not yet in publication, found that the cohort of adolescents possessed a sense of resiliency to difficult moments throughout the donation process and appreciation of their donor parents. “They’re very articulate and they really demonstrated an understanding of their own vulnerability,” says Dr. Nasr. “They could articulate the role they play in the family and expressed feelings of true gratitude towards their parents who gave them a gift of life.”
Supporting a nurse’s research and beyond
Now, Dr. Nasr is looking to bring in both the parents and the adolescents into the same room to talk about their experiences, the proposed project funded by the MCHRI.
“I’m fortunate with the funding that I’ve received from MCHRI [that I can] talk to them as a dyad so that we can then give parents a really systematic and a comprehensive understanding of what’s going to happen to you [when you donate],” Dr. Nasr says, “Not just right now when you’re donating to your child, but what happens when your child grows up, and what happens to that relationship.”
While the study is very small, Dr. Nasr hopes she can move into a national study and look at dyads across the country so she can provide healthcare professionals with comprehensive information from patients who are considering organ transplants. She wants to share her findings with the transplant community and position nurse scientists at the national level as preeminent researchers.
She has been invited to present at the 2019 International Pediatric Transplant Association (IPTA) Congress in Vancouver, Canada, where she will discuss and compare findings from the two sets of data on the parents’ and children’s perspective of living donation. “As a result of my current funding with MCHRI, I plan to continue to explore the long-term outcomes of living liver donors and their recipients in hope of launching into a larger national study looking at this dyad across the country and perhaps internationally.”
Roxanna Van Norman is the marketing manager for the Stanford Maternal and Child Health Research Institute.