Eliminating Racial/Ethnic Disparities in AIDS Clinical Trials in the United States: A Qualitative Exploration of an Efficacious Social/Behavioral Intervention

Abstract

Background African American/Black and Hispanic persons living with HIV (AABH-PLWH) are under-represented in AIDS clinical trials (ACTs) in the United States. Barriers AABH-PLWH experience to ACTs are multi-faceted, including distrust of medical research, low levels of knowledge, unsupportive social norms, lack of referral, and challenges navigating ACT systems. In past research we found a multi-component peer-driven intervention was efficacious in boosting rates of screening for/enrollment into ACTs. The present qualitative study seeks to understand AABH-PLWH’s perspectives on which specific intervention features or components had utility. Interventions features explored included structural elements (e.g., small group sessions, individual sessions on the ACT research unit); approaches (e.g., Motivational Interviewing); and specific components (e.g., small-group discussion of historical and cultural factors reducing participation among AABH-PLWH). Methods A total of 37 AABH-PLWH (mean age 50.6 years, SD=7.5 years; 48.6% female; 62.2% African American/Black, 27.0% Hispanic) were purposively selected from a larger study for in-depth interviews, which were audio-recorded, transcribed verbatim, and analyzed using systematic content analysis. Results We found the intervention improved knowledge and positive attitudes toward ACTs, and triggered social-level facilitators such as altruism and more positive social norms. Discussions of cultural/historical barriers to ACTs associated with race/ethnicity had utility. Holding a session on the ACT research unit reduced fear and increased motivation. Results highlighted the value of Motivational Interviewing, and several components were perceived as less useful (e.g., involving social network members in ACT decisions). Conclusion Findings can inform future intervention designs to address racial/ethnic disparities in ACTs and have implications for trials of other conditions where racial/ethnic disparities persist.

Understanding long-term HIV survivorship among African American/Black and Latinx persons living with HIV in the United States: a qualitative exploration through the lens of symbolic violence

“…Negative emotions impede engagement, but are less commonly the focus of care/services than other aspects ▪ Implement interventions in clinical and social service settings that attend to emotional factors, along with those that focus on cognitions and behavioral skills [78,79].▪ Acknowledge and address fear and distrust common among African American/Black and Latinx PLWH [78,[80][81][82]▪ Acknowledge and address other negative affective states and include programming to help participants manage negative emotions [78,[80][81][82] Continuous traumatic stress is endemic and chronic ▪ Provide services to address the sequelae of a traumatic HIV diagnosis experience, and the often non-linear and challenging process of accepting and adapting to the diagnosis [24]▪ Train providers in trauma-informed care and integrate trauma-informed care in clinical and social service practice [83] PLWH often prioritize individual "failings" despite myriad accomplishments ▪ Help staff and PLWH understand and acknowledge social and structural drivers of poor HIV management, called structural competence [84]▪ Highlight resilience and strengths in clinical encounters…”

Exploring the Engagement of Racial and Ethnic Minorities in HIV Treatment and Vaccine Clinical Trials: A Scoping Review of Literature and Implications for Future Research

“…[67][68][69][70] One reviewed is a pilot test for a larger randomized intervention but was sufficiently different in content and implementation that it was reviewed separately. 69 There were also three subanalyses [71][72][73] done for one intervention 70 and they are also included (Tables 1 and 2).…”

Understanding long-term HIV survivorship among African American/Black and Latinx persons living with HIV in the United States: A qualitative exploration through the lens of symbolic violence

“…Acknowledge and address fear and distrust common among African American/Black and Latinx PLWH (76,(78)(79)(80) ▪…”

“…Acknowledge and address other negative affective states and include programming to help participants manage negative emotions (76,(78)(79)(80) Continuous traumatic stress is endemic and chronic ▪…”