Strategies for Recruiting Women Living with Human Immunodeficiency Virus in Community-Based Research: Lessons from Canada
- Progress in Community Health Partnerships: Research, Education, and Action
- Johns Hopkins University Press
- Volume 12, Issue 1, Spring 2018
- pp. 21-34
- View Citation
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Objectives: This study sought to describe the recruitment of women living with HIV (WLWH) into the community-based Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS), because women are under-represented in HIV research.
Methods: There were 1,424 WLWH were enrolled from British Columbia, Ontario, and Québec, who completed detailed questionnaires administered by peer research associates (PRAs; WLWH with research training). During screening, participants were asked: "How did you hear about the study?" We describe recruitment strategies by subpopulation and offer reflections on challenges and successes.
Results: Of 1,131 participants with complete data, 40% identified as White, 33% African/Caribbean/Black, and 19% Indigenous. The median age was 45 years (interquartile range, 37–51) and 4% identified as trans women. Overall, 35% were recruited through PRAs/peers, 34% clinics, and 19% AIDS service organizations (ASOs). PRAs/peers were the predominant recruitment method in Ontario (49%), compared with clinics in British Columbia (40%), and Québec (43%). Nationally, PRAs/peers were more successful in recruiting WLWH commonly considered to be "harder to reach" (e.g., women identifying as trans, using drugs, not receiving HIV care). Clinics were more effective in recruiting younger women (16–29 years) and women not using ASOs. Recruitment challenges centered on engaging these harder to reach women. Successes included hiring PRAs who built participant trust, linking with clinics to reach women isolated from HIV communities, involving outreach workers to engage street-involved women, and disseminating study information to diverse stakeholders.
Conclusions: Having multiple approaches, engaging a diverse team of PRAs, ensuring flexibility, and cultivating reciprocal relationships with community stakeholders were key to recruiting a diverse and representative sample of WLWH.