Perceptions Facilitate and Prohibit African American Patient Participation in Clinical Trials
Recruiting African-American patients into more clinical trials for cancer treatment is needed to learn more about differences in outcomes between different ethnic groups and provide more opportunities for underrepresented minorities to receive health care. point.
But it has been a challenge, in part thanks to distrust of the health care system and research among this population. In response, a team of researchers designed a study to explore the perceptions of African American cancer survivors and caregivers about participating in clinical trials. Their findings were published in Oncology Nursing Forum.
Researchers recruited African American cancer survivors from the Philadelphia, Pennsylvania area to participate in a series of focus group sessions. They then formed small groups of 5-6 people, led by a university nurse who facilitated the interviews and an official from a local non-profit organization that provides support for cancer survivors. They used Freire’s dialogical model to guide the interviews.
Analysis of the data collected revealed 3 themes related to participation in clinical trials:
- Participant Facilitators Participants discussed the influence of support from friends, their religious faith and their own self-advocacy.
- Barriers to participation Racism, the media and the social determinants of health were all cited by various participants as barriers. In the category of social determinants of health, participants mentioned health insurance and health literacy.
- Facilitators and barriers playing a dual role Patient-provider communication can facilitate participation when it works well, but can also be a barrier if patients have negative interactions with their providers. Similarly, trust in the medical system can facilitate participation, but distrust can and often is a barrier.
The researchers recommend that oncology nurses encourage their African American patients to consider participating in clinical trials to increase their representation. Participants in this study also offered recommendations that could improve communication and participation of African American cancer survivors regarding clinical trials.
First, nurses must provide appropriate and culturally appropriate training on clinical trials. They should explain which tests may be appropriate for the patient. Participants also suggested improving health care providers’ awareness and sensitivity to African American culture, including acknowledging the effect of historical research atrocities experienced by African Americans on their feelings toward clinical trials.
Nurses also need to be aware of their own biases and make an effort to educate themselves so they can address these biases in an open and healthy way.
Participants also recommend that nurses foster trust by listening to patients’ concerns, advocating for them, and helping them navigate the healthcare system.
The study was limited by its small sample size, which limits transferability, as was the fact that all patients were recruited from one city and all but 1 were female.
Granda-Cameron C, Florence YM, Whitfield-Harris L, Kates J, Lenzo J. Perceptions of clinical trial participation among African American cancer survivors and caregivers. Oncol Nurses Forum. 2022;49(2):113-124. doi:10.1188/22.ONF.113-124