Role of Clinical Distrust in Black Americans’ Lack of Participance in Research Studies Imani Gordon Faculty Sponsor: Elizabeth P. Anderson, PhD, RN DePaul University School of Nursing Background & Significance Conceptual Framework Data Matrix Organized By Theme Results The PEN-3 Cultural model (shown below) was utilized as a guide in this integrative literature review. The main objective of the model is to place the concept of culture in the center of the definition of health and recognize that health outcomes, are aligned with health beliefs, which stem from culture. Culture needs to be deeply considered in defining the health status of a population. Measuring the Distrust Barriers to Trust Fear of Negative Outcomes Possible Skepticism Due to History Durant et al. (2011) Societal distrust was more common amongst Black Americans than White Americans (M=5.3, SD=1.8 & M=4.2, SD=1.6 respectively p<0.0001) in relation to clinical research, however interpersonal distrust showed no statistically significant difference between races (p≤0.05) Grande, Shea, & Armstrong (2013) Identified lack of community outreach as a barrier to trust. Furthermore, concluded that hospital-community engagement is one way to overcome this distrust barrier. McDonald et al. (2012) Qualitative study Many subjects were concerned about exploitation and misuse of their medical information. they feared financial manipulation, and consuming toxic chemicals Asked subjects about their awareness of the Tuskegee Syphilis study of 1932. Many of them were aware of the event and attributed their distrust to this awareness along with other factors. However, others were unaware and still very distrusting. Musa, Schulz, Harris, Silverman, & Thomas (2009) Blacks had less personal trust in clinicians than whites (.916 & .948 respectively, p=0.002), and more trust in non-clinician-based health information services than whites (.660 & .595 respectively, p<0.001) Pariera, Murphy, Meng, & McLaughlin (2016) Distrust in medical professionals was affected by barriers like religious beliefs, cultural home practices, and access to information. Watson (2014) Qualitative study Participants feared not only financial extortion and misinformation, but also breeches in confidentiality, and a lack of skilled/safe practices. Found that the Tuskegee experiments had nothing to do with the skepticism their subjects faced. Still, the Tuskegee incident was a factor that the researchers found worth mentioning. Rajakumar, Thomas, Musa, Almario, & Garza (2009) African American parents had a greater amount of distrust in research participation for their kids than white Americans (67% vs. 50%, p=0.04) even when controlled for the factor of education level A major barrier for African Americans with trusting clinical studies is the lack of black representation in the medical research field. Suggested in the conclusion that working with African American researchers during clinical trials could put some of the anxiety to rest in black participants. Also, found that incentivizing parents did not result in more of their children’s participation in studies. Highlighted the infamous Tuskegee Study, stating that knowledge of this injustice, and others throughout history, is one of African Americans’ historical reasons for mistrusting medical research. Watson (2014) Main barriers were the medical charges to pay, the large and untrustworthy profit earned by the facility, and that the facilities are run like businesses more so than public services. 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. 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. Purpose of Study To explore the understudied factor of clinical distrust in relation to Black American’s lack of participation in clinical research Research Question To what extent does clinical distrust compete with other factors in the lack of Black American participation in clinical research? Methods An integrative literature review was completed to identify evidence-based practice related to the Black American population and distrust in clinical research. Seven selected sources were synthesized and analyzed as outlined in the Gray, Grove, and Sutherland (2017) text. Figure 1. PEN-3 Cultural Model Diagram (Iwelunmor et al., 2013) Nursing Implications Cultural Identity Person Extended Family Neigborhood Cultural Empowerment: Positive Existential Negative Relationships & Expactations Perceptions Enablers Nurturers Nurses can understand this major contributor to black health disparities. As patient advocates, they benefit from the improvement of health disparity in any racial group. Nurses can comprehend clinical distrust in the hospital-setting, leading to more culturally competent care. Nurses have the power to lessen clinical distrust through positive patient rapport and skilled practices. Avoid being a barrier to trust and make these patients feel medically empowered. Limitations There is a possibility that within the selected studies, participants mistrusted the very researchers who were exploring distrust. This would 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. Future Research Figure 4: PEN-3 Cultural Model Reimagined/Revision Evaluation of Strength in Selected Studies The current research climate, which focuses on other barriers to black participation over distrust, is not indicative of a culturally competent approach Researchers have thoroughly studied financial, educational, and accessibility barriers to participation, but cultural barriers have been widely neglected. Clinical distrust is a critical cultural barrier. Future studies should place more focus on distrust because it is a front-running barrier to health equality for Black Americans Upon completion of the analysis for this integrative literature review, the PEN-3 Cultural Model (Iwelunmor et al., 2013) that framed this work was re-interpreted. The potential to utilize this model in the specific context of rectifying clinical distrust for Black Americans is promising. Especially, when focusing on the cultural empowerment portion of the model. For the context of rectifying Black American clinical distrust, the review proposes an adjustment to the PEN-3 cultural model. Cultural empowerment, being the motivation behind repairing black distrust and solving health disparities, should be displayed as the central focus in the model. The other two main portions of the model (Cultural Identity and Relationships & Expectations) should feed into the Cultural Empowerment portion as peripheral factors that play a role in achieving cultural empowerment. Figure 4 shows the PEN-3 Cultural Model reimagined to more closely fit the specific topic and goal of this integrated literature review. This depiction portrays that health researchers do not aim to influence a culture’s identity with our practices or change their relationships and expectations- rather to focus on cultural empowerment while the other factors simply embellish that focus. 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 nonparticipation 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 2-point scale was utilized to determine the importance to this integrative literature study purpose, research question, and analysis: 1 = high, 2 = low.