Role of Clinical Distrust in Black Americans’ Lack of Participance in Research Studies: An Integrated Literature Review

Role of Clinical Distrust in Black Americans’ Lack of Participance in Research Studies:

An Integrated Literature Review

Imani Gordon

Faculty Sponsor: Elizabeth P. Anderson RN, PhD

Background: Black Americans face health disparities in the U.S. that cannot be strategically addressed without conducting research studies to understand health deficits within the population. However, this racial group also has remarkably low participance in clinical trials. Therefore, researchers must first understand cultural factors that lead to unwillingness to participate.

Objectives: To explore the extent to which clinical distrust competes with other factors in the lack of Black American participation in clinical research?

Method: An integrated literature review was conducted to explore existing literature on clinical distrust in the black community as it affects research study participance. After the data collection process, the sources were synthesized and analyzed as outlined in the Gray, Grove, and Sutherland (2017) text. A data review matrix was utilized and literature was categorized. A total of seven research studies from 2008 to 2018 were selected and analyzed.

Results: Four major themes pertaining to the research question emerged. Theme 1) Measuring the Distrust: researchers aimed to measure the extent of black cultural distrust and measure the difference between White and Black American levels of distrust in the health care system. Black Americans were found to have high levels of distrust and had higher rates of clinical distrust than White Americans (p<0.001, p<0.002, p<0.01, p<0.04). Theme 2) Identifying Barriers to Trust: researchers identified common distrust barriers. These barriers included but are not limited to lack of black representation in the research field, experienced mistreatment, lack of professionalism amongst clinicians, and financial obstacles. Theme 3) Fear of Negative Outcomes: subjects expressed a fear that there could be negative outcomes from participating in research studies. Those fears included but were not limited to consuming toxic chemicals, being treated like lab animals, and broken confidentiality. Theme 4) Skepticism Due to History: subjects expressed knowledge of historical research mistreatment which made them skeptical to participate. On the other hand, in other cases subjects who expressed no knowledge of historical research mistreatment were still skeptical. Major limitations to this literature review include the possibility that within the selected studies, participants mistrusted the very researchers who were exploring distrust. This could potentially skew survey answers and results. Additionally, most of the studies used convenience samples (5/7 or 71.43%) that were not generalizable. No study (0%) used a conceptual framework, thus all lacked theoretical rigor.

Conclusion: Clinical distrust plays a key role in the lack of Black American participation in clinical research. The current research climate, which focuses on other barriers to black participation over distrust, is not indicative of a culturally competent approach. Future studies should place more focus on distrust because it is a front-running barrier to health equality for Black Americans. A return to the literature assisted in revising this review’s theoretical framework by Iwelunmor, Newsome, and Airhihenbuwa (2013); the PEN-3 (Person-Extended Family-Neighborhood) model. Cultural empowerment, should be displayed as the central focus in the model; because it is the motivation in repairing black distrust and solving health disparities.

Key terms: African Americans, Black Americans, Blacks, clinical distrust, clinical research, health disparities, research participation