Studying patients’ and participants’ attitudes
It can provide participants with a voice, serving as a form of community engagement by representing their values, preferences, and attitudes to those who develop policies or study protocols. In the following paper we surveyed women in the St. Louis Drug Court regarding their attitudes toward various additional protections commonly required in research with vulnerable populations.
In this study we found that the vast majority of women supported efforts that empowered them to make better decisions, but had reservations toward approaches that shifted responsibility away from researchers toward others (whether IRBs, family members, or participant advocates).
Survey research can also lead to a deeper understanding of the factors that influence attitudes. In the following surveys on attitudes toward the criteria used to determine death in the context of organ donation, we found that attitudes are more deeply shaped by nation of residence and whether one practices actively one’s religion than by one’s religious affiliation or even one’s general approach to moral reasoning:
DuBois JM, Fitzgerald RD, Shaheen FAM. Support for organ procurement: National, professional, and religious correlates among medical personnel in Austria and the kingdom of Saudi Arabia. Transplant Proceedings. 2002; 34: 3042-3044.
Using focus groups, we explored public attitudes toward rapid organ recovery, a potentially controversial protocol for recovering organs from deceased donors that was recommended by the Institute of Medicine in 2006. While qualitative methods may yield less generalizable knowledge, they also allow for a deep understanding of complex issues.
The study found that most people assumed such protocols were already being used; few people know that most patients who die are not currently eligible to be donors. The study also found remarkable trends among Hispanic participants: Not one had joined the donor registry, but all wanted to donate their organs. They felt strongly that family members should be asked—both as a form of protection and of respect.
DuBois, the lab PI, edits Narrative Inquiry in Bioethics: A Journal of Qualitative Research, which regularly published narrative symposia—collections of articles on a shared topic, such as being a living organ donor, parenting children with autism as they transition to adulthood, or experiencing psychiatric hospitalization.
Relocating our lab to Washington University School of Medicine offers increased opportunity to collaborate with clinical investigators who worked directly with patients who participate in research. We look forward to exploring a variety of new topics in collaboration with WUSM partner.