"When selling anything to an audience, visible publicity is key:" experiences, barriers, and enablers to participate in a COVID-19 study in Malawi

Background: Many studies in infectious diseases struggle to recruit participants. The SARS-CoV-2 infection, transmission dynamics, and household impact in Malawi (SCATHIM) study reported a refusal rate of 57.2%. Adequate publicity can lead to more people participating in studies. This study explored the reasons for participating in the SCATHIM study.

Methods: A descriptive qualitative study informed by the theory of reasoned action was conducted in Blantyre between January 2022 and March 2022 to assess factors that influence participation in a COVID-19 study among 10 index cases, 10 caregivers, 10 study decliners, and 5 research staff. The data were collected via in-depth interview guides, audio recorded, transcribed, managed via NVIVO and analysed via a thematic approach.

Results: The factors that motivated participation in the study included one's knowledge of COVID-19; potential access to medical services, including free COVID-19 tests for members of the household; financial reimbursements; and the ability to contribute scientific knowledge. The barriers to participation included minimal publicity of the study amidst a novel condition, perceived stigma and discrimination, perceived invasion of privacy, discomfort with the testing procedures, and suboptimal financial reimbursements.

Conclusion: Effective publicity and outreach strategies have the potential to decrease refusal rates in study participation, especially if a condition is novel. Studies on infectious diseases should address stigma and discrimination to promote participation and ensure participant safety.