JMIR Publications

ABSTRACT

Background:

Transgender and non-binary individuals (TGNBI) have received increasing attention within HIV research, with studies documenting the pervasive role stigma plays in creating and sustaining health inequities. However, the proliferation of HIV stigma research with this population has also raised concerns about research practices that may unintentionally stigmatize or re-traumatize the very communities they are designed to benefit. Conducting stigma research is critical for generating accurate information about HIV epidemiology, risk and protective factors, and intervention strategies for TGNBI. Yet little, if any, research has directly examined the experiences of TGBNI when participating in these studies or identified specific research practices (e.g., recruitment materials/study framing, choice of specific survey measures, data collection protocols, researcher behaviors) that may influence study participation, retention, and data quality. Equally important, research has not adequately examined the potential for unintended harm due to emotional distress experienced by participating in such research and what specific strategies might mitigate against potential distressful research experiences.

Objective:

This study aims to develop a set of empirically-based trauma-informed guidelines for conducting HIV-related stigma research with TGNBI to increase researchers’ capacity to recruit and retain TGNBI in HIV-related stigma research, enhance the quality of data collected, and reduce unintentional harm in stigma research methodology.

Methods:

The study will engage in primary data collection using both qualitative and quantitative methodology. First, we will utilize in-depth qualitative interviews with sixty participants representing three participant groups: (1) researchers, (2) mental health clinicians, and (3) TGNBI who have participated in HIV related and sexual health research. Second, the qualitative findings will be used to develop an initial set of survey items representing a preliminary set of guidelines. Third, we will engage seventy-five participants in a three-round modified Delphi method, to refine the guidelines and promote their acceptability among key stakeholders.

Results:

The study is funded by the National Institute of Mental Health starting in July 2022 and data collection began January 2023.

Conclusions:

To make meaningful strides in stigma research, it is imperative to examine experiences of stigma that may happen within the research context and identify strategies for improving data quality and reducing unintentional harm in study recruitment, methodology, implementation, and dissemination.