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Accepted for/Published in: JMIR Formative Research

Date Submitted: Aug 4, 2022
Date Accepted: Jul 31, 2023

The final, peer-reviewed published version of this preprint can be found here:

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

Delmonaco D, Li S, Paneda C, Popoff E, Hughson L, Jadwin-Cakmak L, Alferio J, Stephenson C, Henry A, Powdhar K, Gierlinger I, Harper GW, Haimson OL

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

JMIR Form Res 2023;7:e41682

DOI: 10.2196/41682

PMID: 37676709

PMCID: 10514765

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

  • Daniel Delmonaco; 
  • Shannon Li; 
  • Christian Paneda; 
  • Elliot Popoff; 
  • Luna Hughson; 
  • Laura Jadwin-Cakmak; 
  • Jack Alferio; 
  • Christian Stephenson; 
  • Angelique Henry; 
  • Kiandra Powdhar; 
  • Isabella Gierlinger; 
  • Gary W. Harper; 
  • Oliver L. Haimson

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. Beyond information access issues, LGBTQ+ young people may need information resources to be designed and organized differently than their cisgender and heterosexual peers do, and due to 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 online 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 navigating identity disclosure concerns. These design recommendations include filters, 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.


 Citation

Please cite as:

Delmonaco D, Li S, Paneda C, Popoff E, Hughson L, Jadwin-Cakmak L, Alferio J, Stephenson C, Henry A, Powdhar K, Gierlinger I, Harper GW, Haimson OL

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

JMIR Form Res 2023;7:e41682

DOI: 10.2196/41682

PMID: 37676709

PMCID: 10514765

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© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.