How to Reach the Hidden: Strategies for Recruiting HIV-Positive Transgender Women

Abstract

Purpose: Transgender women (TGW) or biological men, who identify as women, are at high risk for HIV infection and are less likely to enter care. TGW are among the most marginalized of all sexual and gender minority populations, and are therefore at greater risk of violence and discrimination. Further, HIV remains one of the most stigmatizing illnesses in the US and disclosure of one’s HIV status could lead to negative health and social outcomes. Due to social marginalization and stigma related to their gender identity and HIV status, this population is often hard to reach and is underrepresented in healthcare utilization research. Theoretical/conceptual framework: The Network Episode Model is a service utilization model that has been used for exploring the patterns and pathways through which hard to reach populations access care for medical problems and was used to inform this study. Sample: Twenty to twenty-five HIV-positive TGW who accessed care at least once within one year prior to the start of the study. Method and results: Prior to data collection the researcher embedded herself in the community by networking and consulting with community gatekeepers, attending cultural celebrations and events, and volunteering at community agencies that served the transgender population. Using purposive and snowball sampling strategies, participants were then recruited from community- based agencies that serve TGW and from venues where TGW were known to socialize. Local and state health departments assisted with recruitment by identifying eligible participants through care coordination and HIV services databases and direct mailings of recruitment fliers. To protect against the loss of confidentiality, private one-on-one interviews were conducted, a waiver of written informed consent was obtained, and aliases were used to collect and report results. These strategies were selected because they have the highest success rate of recruiting hard to reach populations, provided the greatest protection against loss of privacy, and build on network ties through which TGW socialize and seek formal and informal care. Conclusions: Outcomes of these recruitment strategies and lessons learned in recruiting members of this highly marginalized group will be discussed.