Recruiting African American patients into more clinical trials for cancer treatment is necessary to learn more about differences in results among different ethnic groups and provide more opportunities for underrepresented minorities to benefit from cutting-edge care.
But it’s been a challenge, thanks in part to mistrust in the healthcare 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.
The researchers recruited African American cancer survivors from the Philadelphia, Pennsylvania, area to participate in a series of focus group sessions. They then set up small groups of 5 to 6 people, led by an academic nurse who facilitated the interviews and a leader from a local nonprofit organization that provides support to cancer survivors. They used Freire’s dialogic model to guide the interviews.
Analysis of the data collected revealed 3 themes related to clinical trial participation:
- Facilitators of participants Participants discussed the influence of support from friends, their religious faith, and their own self-advocacy.
- Barriers to participation Racism, media, and social determinants of health were all cited by various participants as barriers. Within the category of social determinants of health, the participants mentioned health insurance and health literacy.
- Facilitators and barriers playing dual roles 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 be a facilitator to participation, but mistrust can and often is a barrier.
The researchers recommend oncology nurses encourage their African American patients to consider clinical trial participation to increase representation. The participants in this study also offered recommendations that could improve communication with and participation of African American cancer survivors regarding clinical trials.
First, nurses should provide appropriate, culturally sensitive education on clinical trials. They should explain which trials may be appropriate for the patient. Participants also suggested improving the awareness and sensitivity of healthcare providers to African American culture, including recognition of the effect historical research atrocities experienced by African American people have 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 those biases in an open and healthy manner.
Participants also recommend nurses should promote trust by listening to the patient’s concerns, serving as an advocate for them, and helping them navigate the healthcare system.
The study was limited by its small sample size, which restricts transferability, as does the fact that all of the patients were recruited from 1 city and all but 1 were female.
Granda-Cameron C, Florence YM, Whitfield-Harris L, Kates J, Lenzo J. Perceptions of clinical trial participation in African American cancer survivors and caregivers. Oncol Nurs Forum. 2022;49(2):113-124. doi:10.1188/22.ONF.113-124