Formation, Operation, and Maintenance of a Community Advisory Board for Research with LGBTQ+ Parents

Community-engaged research is becoming increasingly popular to promote health equity. Objective: The purpose of this paper is to describe the formation, operation, and maintenance of a community advisory board (CAB) of LGBTQ+ parents and healthcare providers who work with LGBTQ+ parents. Method: Using Newman and colleagues outline, we describe the formation, operation, and maintenance phases of our CAB process. Inclusion criteria for CAB members is as follows, CAB members must be 18 years of age or older, live in the U.S., and (a) self-identify as LGBTQ+ and have had a child in the NICU more than five years prior to study initiation, or (b) work in a NICU with LGBTQ+ families and self-identify as LGBTQ+ or an ally. Results: We recruited seven CAB members to guide the development of a research study focused on understanding the experiences of LGBTQ+ parents who had a child hospitalized in the NICU. All members identified as LGBTQ+ parents who had a child in the NICU or providers who worked in the NICU. Reflections from CAB member are included. Conclusions: While our manuscript primarily focuses on the formation and initial phases of the CAB, it underscores the importance of community engagement in research.