Community-Engaged Participatory Methods to Address Lesbian, Gay, Bisexual, Transgender, Queer, and Questioning Young People’s Health Information Needs With a Resource Website: Participatory Design and Development Study (Preprint)

Abstract

BACKGROUND Lesbian, gay, bisexual, transgender, and queer and/or questioning (LGBTQ+) young people (ages 15 to 25) face unique health challenges and often lack resources to adequately address their health information needs related to gender and sexuality. OBJECTIVE The objective of our study was to work with a community partner to develop an inclusive and comprehensive new website to address LGBTQ+ young people's health information needs. METHODS We conducted interviews (n = 17) and design sessions (n = 11) (total individual participants n = 25) with LGBTQ+ young people to understand their health information needs and elicit design recommendations for the new website. RESULTS We present participants’ desired resources, health topics, and technical website features that can facilitate information seeking for LGBTQ+ young people exploring their sexuality and gender and looking for health resources. We describe how filters can allow people to find information related to intersecting marginalized identities, and how dark mode can be a privacy measure to avoid unwanted identity disclosure. We reflect on our design process and situate the website development in previous critical reflections on participatory research with marginalized communities. CONCLUSIONS Meaningful collaboration with community partners throughout the design process is vital for developing technological resources that meet community needs. We argue for community partner leadership, rather than just involvement, in community-based research endeavors at the intersection of human-computer interaction and health.