Community-Engaged Participatory Methods to Address LGBTQ+ Young People’s Health Information Needs With a Resource Website: Participatory Design and Development Study

Abstract

Background: Lesbian, gay, bisexual, transgender, queer, and questioning (LGBTQ+) young people (aged 15 to 25 years) face unique health challenges and often lack resources to adequately address their health information needs related to gender and sexuality. Beyond information access issues, LGBTQ+ young people may need information resources to be designed and organized differently compared with their cisgender and heterosexual peers and, because of identity exploration, may have different information needs related to gender and sexuality than older people.

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. To design this resource website using a community-engaged approach, our objective required working with and incorporating content and design recommendations from young LGBTQ+ participants.

Methods: We conducted interviews (n=17) and participatory 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. We involved our community partner in all aspects of the research and design process.

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. We suggest recommendations for future LGBTQ+ health websites based on our research and design experiences and final website design, which can enable LGBTQ+ young people to access information, find the right information, and navigate identity disclosure concerns. These design recommendations include filters, a reduced number of links, conscientious choice of graphics, dark mode, and resources tailored to intersecting identities.

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.