A Virtual Photovoice Study of Older African Americans Perceptions of Neurovascular Clinical Trials

Abstract

Background: Alzheimer disease (AD) poses a major public health crisis, especially among African Americans (AAs) who are up to 3 times more likely to develop AD compared with non-Hispanic Whites. Moreover, cardiovascular risk factors represent a precursor to cognitive decline, which contributes to racial/ethnic disparities seen within AD. Despite these disparities, AAs are underrepresented in neurovascular research. The purpose of this qualitative virtual photovoice project is to explore how older Midwestern AAs perceive neurovascular clinical trials.

Methods: Five photovoice sessions were held virtually over a 3-month period. Participants took photos each week that captured the salient features of their environment that described their perceptions and experiences related to neurovascular clinical trials. Structured discussion using the SHOWED method was used to generate new understandings about the perspectives and experiences in neurovascular clinical trials. Data was analyzed using strategies in participatory visual research.

Results: A total of 10 AAs aged 55 years and older participated and a total of 6 themes emerged from the photovoice group discussions.

Conclusion: Findings from this study inform the development of culturally appropriate research protocols and effective recruitment strategies to enhance participation among older AAs in neurovascular clinical trials.

FIGURE 1

“In 1977, the song Tuskegee 626, exactly 33 and 1/3 seconds-long, shaped my perceptions of clinical trials as a young Black man. I memorized the song, read about the Tuskegee syphilis experiments, and internalized the general sense of distrust. In this image, I am trying to communicate the historical basis for resistance and barriers to African American participation in clinical trials.”

FIGURE 2

“I dealt out this random game of Texas Hold-Em Poker. Each hand of two cards is unique, but is subject to the same set of variables introduced by “the dealer” to build the best hand of five cards. With one more variable (the River card) yet to be introduced, each participant can evaluate strengths, calculate probabilities, assess risks and make a decision on completing the hand. In real life, each study participant comes to the table with a unique hand of experiences and qualities. Within the parameters of an Observational study, “the dealer” can analyze the response behavior and decisions of the participants in order to predict outcomes.”

FIGURE 3

“To engage people of diversity, it is imperative (in my opinion), to have the research staff including the doctors look like the participants. This will aid in trust being established. Too often we are asked to participate in studies, and we do not see any “like” us in the research technician/doctor role.”

FIGURE 4

“This is photo of myself and my wife making a presentation at our church during our pastor’s anniversary service. With respect to the research question, this picture depicts a method that can be used to increase diversity for clinical trials by getting support from participants to share their clinical trial experiences with the Afro-American community, especially in church settings.”