About the study

What is RESTART about?

RESTART (the Trauma-Informed Stigma Research Study) was developed and is being conducted by a group of trans and cis researchers at Hunter College in New York City. The overall goal of this study is to identify strategies and develop guidelines for integrating a trauma-informed approach to HIV and sexual health-related research with trans and non-binary communities.

This research is about acknowledging the ongoing experiences of trauma that is perpetuated in HIV and sexual health-related research and figuring out solutions to address the harm that has been caused, and finding ways to empower and move forward while promoting trauma-informed and compassionate collaboration within research.

What are the goals of RESTART?

RESTART aims to better understand the experiences of transgender and nonbinary individuals who have participated in HIV and sexual health-related stigma research. This study will help us identify specific research practices (e.g., recruitment materials, choice of specific survey questions, researcher behaviors) that may influence:

  • Study participation

  • The ways in which participant information is collected

  • The potential for experiencing unintended harm when participating in research

  • Specific strategies to reduce and address potentially distressing research experiences 

We will use this information to develop to a set of guidelines and recommendations for conducting HIV and sexual health-related research with transgender and nonbinary individuals in a way that is person-centered, trauma-informed, and actively de-stigmatizing.

Why are we doing this study?

RESTART comes out of some of our other work with trans and non-binary community members, health care providers, and researchers who kept telling us that they felt like HIV and sexual health-related studies and surveys documenting stigma and health disparities among trans and non-binary communities were unintentionally recreating or triggering the very traumatic experiences they are trying to understand.

Trans and non-binary folks who had participated in these studies told us that the surveys and questions they were being asked often made them depressed or feel bad about themselves.

And trans and non-binary identified researchers and health care providers said they often felt uncomfortable implementing study procedures that they found stigmatizing.

When we asked what was needed to fix this, we were told that there needed to be a set of guidelines or “checklists” for researchers on conducting trauma-informed non-stigmatizing HIV and sexual health-related research.

Why do we want to encourage a trauma-informed approach to research?

Many commonly-used measures used in HIV and sexual health-related research may ask questions or include items that can be experienced as stigmatizing, or may ask participants to discuss traumatic experiences, such as history of physical and sexual violence, family rejection, experiences of discrimination of discrimination and harassment, and so on.

There are also currently no evidence-based guidelines for person-centered, trauma-informed, and actively de-stigmatizing implementation of HIV and sexual health research and care.

Conducting research is very important to gather accurate information about HIV and sexual health on a population level, yet often the research being conducted contributes to unintended harm and re-traumatization of community members.

Because a lot of this research takes place at community health centers, stigmatizing research experiences may inadvertently negatively affect engagement in HIV and sexual healthcare.

Research participants having continual negative experiences can also have significant effects on the success of recruitment and engagement and the quality of the data for future research studies.

We believe that having evidence-based guidelines for trauma-informed, person-centered HIV and sexual health-related research is vitally important in order to:

  • Prevent community members from experiencing further harm, stigma, and re-traumatization

  • Improve research participant recruitment and retention, strengthen data quality

  • Enhance trust in the research process

  • Reduce HIV incidence

  • Improve health outcomes for people living with HIV