Marie Nolan, PhD
Johns Hopkins University School of Nursing faculty member Marie Nolan, DNSc, will lead a team of Johns Hopkins investigators in a $2.1 million study to determine how potential kidney donors make their donation decision and how kidney donors recover after the surgery.
The four-year study, funded by the National Institute of Nursing Research, will survey 189 live kidney donor candidates during their initial donor evaluation and at three, six, and 12 months after surgery to examine how they perceive the donation experience and recovery period. Those who eventually choose not to donate also will be surveyed during the initial evaluation and three months later.
Nolan, who is an associate professor and director of the Doctor of Nursing Science program at The Johns Hopkins University (JHU) School of Nursing, will direct the multi-disciplinary JHU research team that includes from the School of Nursing, Anne Belcher, PhD, RN, senior associate dean, and Linda Rose, PhD, RN, associate professor; Matthew Cooper, MD, director of the Kidney Transplant Program; L. Ebony Boulware, MD, School of Medicine; Richard Thompson, PhD, Bloomberg School of Public Health; and Kathryn Dane, RN, BSN and Barbara West, RN, BSN, Department of Surgery at The Johns Hopkins Hospital.
Although living donation is rapidly increasing, with more than 52,000 persons currently awaiting kidney transplantation and 20 percent more added to the list each year, very little is understood about how individuals decide whether to donate, and how they perceive the donation experience itself. The U.S. Department of Health and Human Services Advisory Committee on Transplantation now is stressing the need to study living donor decision-making and outcomes.
“Previous studies have simply asked donors whether they would still choose to donate if they could make their choice all over again,” says Nolan. “But just because a donor would do it again does not mean that the donor was satisfied with all aspects of pre-donation education or post-donation care.”
“We want to talk to people who do and do not choose to donate,” says Nolan. “What is the process like that leads individuals to their different decisions? What are the differences in their experiences?”
Nolan notes, for example, that cultural background may play an important role in the donor experience. “African-Americans comprise 12 percent of the U.S. population and over 30 percent of those with end stage renal disease,” says Nolan. “However, they are less likely to be living donors than whites, and only 15 percent of living organ recipients are African-American. In studying how individuals decide whether to donate, we hope to better understand these disparities.”
The family’s role in helping an individual make the donation decision may also be important. Most U.S. transplant centers emphasize autonomous decision-making. Assuming that the donor may feel pressure from family members to donate, they may isolate the individual from his or her family during the decision-making process. But Nolan has found that some donors actually prefer shared family decision-making. “If we can better understand the process,” says Nolan, “we can tailor donor education to give those considering donation more of the information that matters to them.”