Coronavirus disease 2019 (COVID-19) magnifies the disproportionate burden of cardiovascular disease, diabetes, and other chronic diseases Black Americans face due to structural racism, psychosocial stress, and socioeconomic status.1, 2 To monitor the progression of COVID-19 which has increased incidence in Black communities, US regional programs began implementing surveillance and strategies to increase testing and reduce spread among vulnerable populations in April 2020.1, 3 Yet, Black populations are generally less likely to participate in research, largely due to cultural barriers to recruitment and low representation in educational and healthcare institutions.4 Community-based methods and partnerships with underrepresented populations can increase trust and study participation; accordingly, we sought to understand potential barriers specific to COVID-19 treatment and prevention in Black Americans using focus groups.4
Self-identified Black American residents aged 30–60 years with regular access to primary care (parent study requirement) were recruited nationally using Craigslist and ResearchMatch advertisements. Focus groups were conducted remotely via Webex from April to May 2020. Study design and interview analysis followed the Consolidated Criteria for Reporting Qualitative Studies (COREQ) (see Table 1 for interview guide)5. Online focus groups were each an hour long with a maximum of five participants and 2–3 facilitators. Interviews were recorded with video and audio, transcribed verbatim, and de-identified. Using grounded theory, patterns within the data were analyzed and identified through inductive thematic analysis; recruitment continued until thematic saturation was reached; an inter-coder reliability analysis was performed using percent agreement between raters.6 Participants provided verbal informed consent per OHSU IRB exemption guidelines.
Eight focus groups engaged 29 participants (22 women) aged 40 ± 8 years (mean ± SD). Regarding optimized treatments for and prevention of COVID-19 among Black Americans, three major themes emerged: patient autonomy, holism, and structural racism. Secondary codes were not used in analysis as inter-coder reliability was found to be in ≥ 95% agreement. The data that support the findings of this study are available on request from the corresponding author NPB. Table 2 lists themes and representative quotes.
Over 73% of participants emphasized accountability for one’s own health, described by some as a method for mitigating pervasive historical and personal disadvantages regarding health access due to their Black heritage and identities. Participants placed the onus largely on individuals to reduce risk factors for disease and slow COVID-19 infection.
Eighty-three percent of participants viewed medications for diseases disproportionally affecting Black Americans as a last option, often because of unwanted side effects, and preferred holistic approaches including supplements and lifestyle changes.
Considering COVID-19 infection and death rates among Black Americans, many participants questioned how their race, and not pre-existing conditions, could heighten their risk. Participants held two predominate beliefs about COVID-19’s disproportionate effect on Black Americans despite underlying conditions: (1) implicit bias within health care, and (2) apathy among individuals, possibly influenced by misinformed administration of policies regarding social distancing and subsequent reopening in predominantly Black neighborhoods. Participants also believed that infrastructure and finances limiting one’s ability to stay home or socially distance contributed to disproportionate infection rates. Participants generally preferred health initiatives that recruit according to structural or socioeconomic variables contributing to disparity, instead of initiatives that recruit by racial demographics.
Emergent themes in our focus groups suggest that community involvement at the outset is critical for proper needs assessments, as well as in subsequent design and implementation of any new approaches aimed at assessing or reducing unfair burden of morbidity and mortality due to conditions disproportionately affecting Black Americans. For example, COVID-19 transmission surveillance programs that oversample Black communities may face barriers to optimizing outreach if (1) race, isolated from lifestyle or acknowledgement of personal health accountability, is a criterion in sampling or study design; or (2) established community rapport is lacking or overlooked in program design, perhaps prevented through the involvement of community liaisons. Black Americans would likely benefit more from initiatives that emphasize patient autonomy and provide tools for addressing socioeconomic or pathologic risk factors relevant to health outcomes. Potential study limitations include generalizability to populations lacking health coverage. Overall, findings highlight the importance of understanding community concerns about the orchestration of optimized treatments for COVID-19 among Black Americans, and underscore the health benefits of building community trust through early research involvement.
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This work was supported by a Research Supplement to R01 HL142064, the parent grant (SAS). Support was also provided by KL2TR002370 (NPB) and the Oregon Institute of Occupational Health Sciences at Oregon Health & Science University via funds from the Division of Consumer and Business Services of the State of Oregon (ORS 656.630). The parent study received support from UL1TR000128 (Oregon Clinical & Translational Research Institute).
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Ordaz-Johnson, O.H., Croff, R.L., Robinson, L.D. et al. More Than a Statistic: a Qualitative Study of COVID-19 Treatment and Prevention Optimization for Black Americans. J GEN INTERN MED 35, 3750–3752 (2020). https://doi.org/10.1007/s11606-020-06259-2