Developing Guidelines for Conducting Stigma Research With Transgender and Nonbinary Individuals: Protocol for Creation of a Trauma-Informed Approach to Research
Authors: Klein Augustus , Golub Sarit A , Berke Danielle , Castle Elijah 
Published: December 2024

Background

Transgender and nonbinary individuals 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 retraumatize 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 transgender and nonbinary individuals. Yet, little research has directly examined the experiences of transgender and nonbinary individuals when participating in these studies or identified specific research practices (eg, recruitment materials or study framing, choice of specific survey measures, data collection protocols, and 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 aimed to develop a set of empirically based trauma-informed guidelines for conducting HIV-related stigma research with transgender and nonbinary individuals to increase researchers’ capacity to recruit and retain transgender and nonbinary individuals 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 use in-depth qualitative interviews with 60 participants representing 3 participant groups: researchers, mental health clinicians, and transgender and nonbinary individuals 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 75 participants in a 3-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. The study’s findings underscore the critical importance of adopting a trauma-informed approach to HIV stigma research with transgender and nonbinary individuals.

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.

International Registered Report Identifier (IRRID)

DERR1-10.2196/66800