Revista de SIDA e investigación clínica

The Experience of Screening for HIV/AIDS Medical Studies among African-American/Black and Latino/Hispanic Persons Living with HIV/AIDS: A Mixed-Methods Exploration

Abstract

Stephanie Engel, Marya Viorst Gwadz and Charles M Cleland

Objective: African-American/Black and Latino/Hispanic persons living with HIV/AIDS (i.e., “PLHA of color”) are under-represented in HIV/AIDS medical studies (HAMS). A crucial entry point into HAMS is screening, but PLHA of color face serious barriers to screening compared to Whites. Recently we evaluated a social/behavioral intervention that substantially increased rates of HAMS screening among PLHA of color. Yet very little is known about the actual screening experience for these under-represented subgroups. Thus, the objectives of the present study were to explore participants’ motivations for and experiences of HAMS screening.

Methods: A total of 186 participants in the larger study’s intervention arm were screened for HAMS, 35 of whom also participated in qualitative interviews. Participants engaged in a structured interview about the screening experience at 4- and 12- months post-baseline (14 items, Cronbach\\\'s α=0.72). Further, from a qualitative data set we purposively selected a set of three case studies to contextualize and enrich quantitative findings on screening experiences.

Results: The screening experience was overwhelmingly positive. Almost all participants reported being treated with dignity and respect, did not feel they were being treated like a “guinea pig,” and experienced a high level of trust in the setting and the screener, with no gender or racial/ethnic differences, and no differences based on whether participants were found eligible for HAMS during screening. A number of areas where screening could be improved were also identified.

Conclusions: Despite the complex barriers PLHA of color experience to screening for HAMS, the experience of screening was positive. Moreover, HAMS screening experiences were positive regardless of gender, race/ethnicity, or HAMS eligibility. HAMS screening can therefore be a productive learning experience that may reduce patient concerns about participating in HAMS. As such, fostering screening among PLHA of color can be an important component of reducing racial/ethnic disparities in HAMS.