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

Abstract

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. 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. 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. 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.