Psychologists have found, however, that many patients
— particularly minorities — find it overwhelming to talk to
their families about living organ donation and therefore never
discuss the possibility with them. These patients may not know
how to bring up the topic, or might fear the answer will be no.
Others may be too concerned about risking a family member’s
health or worried about disappointing the donor if the organ
fails, Dew says.
Several psychologists are helping patients get around
those concerns. In a 2007 randomized, controlled trial with
132 end-stage renal disease patients, for example, researchers
found that patients who participated in a home-based
educational program that fostered family decision-making
and discussion about living donation increased patients’
willingness to discuss living donation with other people.
The intervention also led to a higher number of living donor
inquiries to the transplant program, more donor evaluations
and more living donor transplants than a conventional clinic-
based educational intervention that included only the patient
and an accompanying family member. The researchers, led
by James Rodrigue, PhD, a clinical psychologist at Beth
Israel Deaconess Medical Center, say the informal setting
and family-based discussions with a trained health educator
made patients and their families feel more comfortable about
asking questions and sharing their concerns about donation.
(American Journal of Transplantation, Vol. 7, No. 2)
In an effort to help minorities better understand living
donation, Emory University social psychologist Kimberly Jacob
Arriola, PhD, is developing culturally sensitive educational
materials for black end-stage renal disease patients that improve
their understanding of living donor transplant as a treatment
option. “The hope is to be able to increase their knowledge
about living donation but also to boost confidence in their
ability to have a conversation with their friends and family
about it,” Arriola says.
Reaching patients where they are
Yet before a patient can even approach family about
considering evaluation for a living donation, medical
professionals must make it clear that transplantation is even
an option. A lack of information, coupled with a fear of
surgery, often causes eligible patients to pass up a transplant
evaluation — a step that’s required to get on the nation’s
waiting list, says Amy Waterman, PhD, a health psychologist
at Washington University School of Medicine in St. Louis.
Her research has also shown that kidney failure patients on
dialysis are often so overwhelmed by the lifestyle changes
they’ll need to make for dialysis treatment that they’re given
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