Community Advisory Boards as a Form of Community-Engaged Research for Gender Diverse Youth

Abstract

Gender diverse youth are incredibly resilient but face significant stigma and marginalization. In this article, we argue that in the face of these challenges, researchers must work collaboratively with gender diverse youth and caregivers to identify and address the most important issues affecting them. We use our Navigating Gender Together Project as an example of using community advisory boards in community-engaged research. Although community engagement requires more resources, it overwhelmingly enriches research and increases its relevance for the community. Relevant, evidence-based research is critical in supporting gender diverse youth and their families.

Introduction

Gender diverse youth are incredibly resilient despite the stigma, harassment, violence, and health disparities they often experience. ¹ The stigma against gender diverse youth has only increased in the recent sociopolitical climate marked by waves of anti-transgender legislation and restrictions on gender-affirming care for youth.^2–8 With these challenges, it is even more vital that researchers increase efforts to study how to best support gender diverse youth and their well-being.

One way of conducting such research is to involve gender diverse youth and people in their communities, specifically in the form of Community Advisory Boards (CABs). CABs can collaborate with investigators to conduct research grounded in the needs identified by gender diverse youth and their communities. In this article, we discuss our experiences in collaborating with our Navigating Gender Together Project CAB to conduct research that aims to use formative quantitative and qualitative research methods to identify barriers to parental gender affirmation of Black and Latine gender diverse youth to develop culturally informed interventions.

Community Engagement Through CABs

Community-engaged research allows community members and key stakeholders to help guide the research questions being asked, how best to ask these questions, and how best to disseminate the findings to have the most effective positive impact, while not further stigmatizing their lives. ⁹ The spectrum of community engagement can include outreach, consultation, collaboration, and shared leadership with community members and stakeholders to optimize the impact of research and its relevance to the needs of target communities. ⁹ Some studies focused on gender diverse youth have incorporated community engagement into their methods and approaches.^10–12

One form of community engagement is working with CABs. A CAB typically comprises community members who share a common background, identity, and/or culture by which the community's interest in research can be represented and conveyed. ¹³ Use of CABs has grown in biomedical research, and it may be tempting for some researchers to superficially engage with CABs by meeting only at the beginning and end of the study. However, community-engaged research focuses on the need to more meaningfully engage with CABs, and this requires a shared purpose, time commitment, and ongoing communication. ¹⁴ At study start of our “Navigating Gender Together Project,” we convened a CAB comprising Black and Latine gender diverse youth, caregivers of Black and Latine gender diverse youth, and service providers in communities of color. Meaningful ongoing collaboration with our CAB has been instrumental in keeping our research grounded in the needs of the communities we hope to impact.

CABs can provide community knowledge and perspectives to inform study procedures and instruments. For instance, the CAB for our Navigating Gender Together Project assisted in the development and revision of interview and focus group guides. Collaboration with our CAB allowed for conversations as to whether the original questions we planned to ask in the guides captured the intersectional experiences of Black and Latine gender diverse youth and if questions were being asked in ways that were sensitive and culturally informed.

In addition, CABs can be incredibly helpful in recruiting difficult-to-reach and vulnerable populations. Our CAB helped us think through approaches to identify and recruit Black and Latine gender diverse youth within their communities and outside of multidisciplinary pediatric gender centers. Notably, our CAB meets virtually, and members are geographically dispersed throughout Northern California; this has allowed members to recommend diverse local community-based organizations (CBOs) for our team to engage. At the advice of our CAB, we provided informational presentations to CBOs to aid in recruitment and promote future community-based collaboration.

Moreover, CABs can be helpful in ensuring research findings are disseminated back to communities in a language that is accessible and actionable for them. In collaboration with our CAB, we developed information sheets containing pertinent information concerning the impacts of supportive environments on the health and well-being of Black and Latine gender diverse youth. These sheets will be disseminated to relevant CBOs and institutions, so that our work can directly impact the care and support of Black and Latine gender diverse youth in different socioecological domains, especially within their own communities.

During one meeting, CAB members advised our research team to revamp an initial draft of a one-page information sheet meant to summarize the published findings from statewide school-based survey studies focused on the relationship between school-based harassment, mental health symptoms, and substance use among Black and Latine transgender youth.^15,16 Because this information sheet would be distributed to local public schools, one of the questions raised was, “What if an anti-trans school administrator looks at this and tells a student, if you stop being trans, you won't be harassed?”

Although other items were on the CAB's agenda for this session, we used the entirety of the session to discuss this issue. We had a great discussion about the importance of presenting objective, evidence-based research while also presenting data in a way that did not add to the stigma these youth already face. Our analysis and findings did not change, but through productive discussions with our CAB, we amended the information sheet's images and language. This feedback was critically important in making sure that we were mindful in our communication of our study's findings to schools and communities.

Our CAB has provided tremendous contributions to our research program. Admittedly, community engagement, in general, requires more resources and time, but it truly does enrich the research process and the research's relevance. One year into working with our Navigating Gender Together Project CAB, we have had challenges that have been addressable and are overwhelmingly outweighed by the benefits. Our CAB includes members with different ages, education attainment, professions, and backgrounds; notably, some members are youth and young adults in dynamic periods of their lives. One of our concerns has been the retention of CAB members over time. Approaches for minimizing attrition have included monetarily compensating members for their valuable time, providing letters attesting to their CAB participation for college and job applications, and coordinating meetings during times convenient to CAB members.

Intrinsic power dynamics within the CAB has been another potential issue. For example, youth may be less likely to speak up or make recommendations while adult members are present. Mindful facilitation of the group dynamics and using breakout rooms for specific questions are approaches we have used to mitigate this issue. Finally, reviewing scientific methods and results of our research with members who do not have scientific backgrounds has been a challenge. The Navigating Gender Together team has addressed this through inclusion of sessions within CAB meetings to orient members to different research methods, which helps us all engage meaningfully and provides the added benefit of supporting all CAB meetings in becoming more discerning consumers of scientific findings more broadly.

Conclusion

Community engagement through working with our CAB has enriched our research that aims to support youth who have dual minoritized experiences of being racial and ethnic minorities and gender diverse. As our research through the Navigating Gender Together Project continues, we are hopeful that ongoing engagement with our CAB will positively impact our future intervention, which we hope will improve parental gender affirmation of Black and Latine gender diverse youth. Instituting CABs as a form of community engagement is one way that we as researchers can work with gender diverse youth and their families to develop and disseminate relevant evidence-based research.