chai
designing for LGBTQ+ youth healthcare
THE ORGANIZATION
Community Health Access Initiative (CHAI)
Efforts through the Resistance and Resilience Collective within the University of Michigan School of Public Health that consists of community organizations and academic partners to provide free training and technical assistance program for health care providers and staff that focuses on improving the health and well-being across all areas including physical and mental health of LGBTQ+ youth in Washtenaw County, Michigan by increasing access to affirming and inclusive health care services.
CHAI attempts to achieve LGBTQIA+ health equity through publishing health care resources and trainings on their website.
THE TEAM
Research
Christian Paneda
Dan Delmonaco
Shannon Li
Principal Investigator
Gary Harper, PhD, MPH
CHAI Staff
Elliot Popoff, MPH
Luna Hughson, MA
Design and Development
Christian Paneda
Research and Design Lead Faculty
Oliver Haimson, PhD
Community Partner
CHAI Action Committee
DISCLAIMER
My role specifically pertains to the research process, and not the design process! The design process is taken ownership to the designer/developer of the CHAI project - Christian Paneda. The project will demonstrate in-depth the research process and how its findings translates to design decisions made.
End Research Goals
01
Redesign the CHAI website with user research to validate and drive forward design decisions for the website
02
Analyze data gathered for the purpose of understanding how to group label contents and determine the information architecture of the site
DEFINE THE PROBLEM
Access to healthcare is a fundamental human right. We must address LGBTQIA+ Healthcare.
63%
48%
24%
LGBTQIA+ youth felt sad or hopeless (CDC 2019)
LGBTIQIA+ youth considered suicide (CDC 2019)
LGBTQIA+ youth misused prescription drugs (CDC 2019)
How might we better communicate health care resources and trainings with a website by leveraging community partnerships?
RESEARCH
Focus Groups & User Interviews
Two sets of user interviews were conducted (x = 10, y = 5) and 3 sets of focus groups / design sessions with stakeholders (both by Dan Delmonaco and Christian Paneda). The focus group sessions consisted of 13 users who identify as young LGBTQIA+ people in the state of Michigan (with a range of LGBTQIA+ identities recruited). Participants in these focus groups answered questions about how they currently search for healthcare information, their needs for an LGBTQIA+ website for health care resources, existing thoughts on healthcare information, and visualizations of their envisioned sites. The focus group sessions included a design activity where participants could quickly sketch out mock-ups of an ideal LGBTQIA+ health care website for young people.
Focus Group Mock Up Sketches
Common trends from the focus group sketches
Overall Key Findings Identified from Focus Groups
01
Users need a medium for searching, finding information, and asking for relevant information.
02
The site should have multiple audiences. Audiences include not only LGBTQ+ youth, but also healthcare providers
03
Site should be intersectional, catering to a wide audience of LGBTQ youth of intersecting identities
Quantitative Data Analysis: Affinity Mapping
Conducted by Christian Paneda following one set of the user interviews to summarize the key findings from the user interviews.
Overall Key Findings Identified from User Interviews
01
The purpose of the CHAI website is to empower the community by sharing LGBTQIA+ resources to youth and providers.
02
Users need to a way to search and ask for relevant LGBTQIA+ health care resources within the website
03
The website should be designed to encourage the privacy and safety of LGBTQIA+ youth
04
Information on the site should not be too dependent on words, but leverage imagery and spacing to inform
05
Website should implement elements for effective and rapid discoverability that best suits the user
DESIGN DIRECTION
Information Architecture
In determining the organizational structure of the site, card sorting was critical to understanding how user's search for information and group content together. In addition, a coding analysis was done for identifying the resources to be present on the site and the grouping of resources that best meet users' source searching process.
Card Sorting
After reading through the transcripts from the focus groups and user interviews, I gathered a list of common themes across all the different interviews in addition to the topics the focus groups have gathered. With the list of themes written down, they were used in an open card sorting activity for participants to group the themes into topic categories they have defined openly themselves. The results from the open card sorting activity resulted in 10 topics that describes the most important information that LGBTQ+ people seek about their health online, what types of resources they wish they had available to them, and intersectional resources that take to account different backgrounds and circumstances. Each topic categories the participants have created was then used for participants to then place cards that best fit under each themes through a closed card sort. All of these findings are formative to the design decisions made for the CHAI site.
I. Open Card Sort
Identified most common topics based on topic labels from participants in the grouping of the cards from the open card sorting activity via Optimal Workshop
Dendrograms - percentage of agreement on card grouping under each label
Topics Identified
Relationships
Sexual and Reproductive Health
Navigating healthcare and finding a provider
Navigating identity and coming out
LGBTQ+ 101
Transgender and Nonbinary Resources
Crisis Resources
Finding Community
Mental Health
Resources for providers
Resources for parents
I. Closed Card Sort
With the list of topics from the open card sort, a closed card sort was conducted to narrow down the grouping of the cards into the pre-defined list of topics that was determined from the open card sorting activity.
Optimal Workshop Popular Placement Matrix
Relationships
Consent
Relationship violence
Online Dating
Sexual Assault & Sexual Harassment
Sexual and Reproductive Health
Menstruation
Testing (HIV, STI, pregnancy)
LGBTQ+ inclusive sexual education
Sexual Assault & Sexual Harassment
Navigating healthcare and finding a provider
Health screening
Changing Healthcare Providers
Knowing your medical rights
Navigating the insurance system
Finding LGBTQ+ inclusive providers
Healthcare confidentiality
Dealing with non-inclusive doctors
Provider recommendations
Navigating finances
Finding a therapist
Navigating identity and coming out
Coming out
Resources for intersecting identities
Navigating sexual and gender identity
Resources for LGBTQ+ youth
Finding community
LGBTQ+ 101
Terms related to LGBTQ+ (glossary)
LGBTQ+ History
Pronouns
Debunking misinformation
LGBTQ+ people’s success stories
Transgender and Nonbinary Resources
Gender transition resources
Using binders
Gender dysphoria
Hormone injection how-to
Trans people’s inclusion in sports
Affirmative care for transgender and/or non-binary people
Inclusive restrooms in healthcare facilities
Crisis Resources
Sexual Assault & Sexual Harassment
Homelessness
Hotlines
Navigating social services programs
Finding Community
Finding community
Local community resources
Navigating social services programs
Homelessness
Mental Health
Mental Health resources
Self Care
Substance abuse
Finding a therapist
Hotlines
Resources for providers
Health screening
Affirmative care for transgender and/or non-binary people
Inclusive restrooms in healthcare facilities
Clinical Skills for providers serving LGBTQ+ people
Inclusive intake forms for LGBTQ+ people
Resources for providers serving LGBTQ+ people
Service Referrals
Resources for parents
Debunking misinformation about LGBTQ+ people
Resources for parents of LGBTQ+ people
Coding
I. Focus Group Transcript Coding
A thematic analysis is initiated with an analysis of the focus group transcripts by identifying initial codes. Some codes identified included were accessibility, LGBT stories/experiences, barriers to finding information, intersectionality, etc. Other examples of the few of many codes identified are:
Lack of education or misinformation
“I had my …… until I got to college I had zero information about queerness and one of the reasons that it took me a very long time to come out, or comparatively long time to come out was that I had zero information about what it would look like to be a queer teenager in the community that I was living in. So I felt like I did a lot of it just on my own, just trying to figure it out, trying to make sense of things and I don’t think I made sense of a lot of things until college, just because I had very little information.” - 23, non-binary, pansexual, Southeast Asian, graduate student
Inclusive conversation and education on sexual health
“It was very ………. I remember knowing that I had a lot of resources available to me to learn, through things like the sexual information center, but I also remember feeling like they didn’t include me and I wasn’t accepted there, in those spaces, because I wasn’t having a ton of sex all the time.” - 23, non-binary, pansexual, Southeast Asian, graduate student
Emotional well-being is equally as important
“I work with … feel like they need to pick an identity or a label very quickly and often don’t feel gay enough, trans enough, xyz enough to find community and be themselves ………. Do I fit into this category? And am I allowed to fit into this category of LGBTQ identity? And I have xyz feelings and desires, does that make me a lesbian? …… focus more on just feeling comfortable with themselves and knowing themselves really well” - 23, non-binary, pansexual, Southeast Asian, graduate student
Educating providers and providing options for self-care
“And information …… their pharmacy gave them the wrong kind of needles …… They didn’t have information on how to do that so they were like, Does anyone know how to do this? Please help me. I had a video that I got when I started T that was how to do the sub-Q injection. ….. It was a really cool video that I had and it was like, How to give yourself an injection. It would be convenient for that to be widely available.” - 21, female, pansexual or bisexual, Middle Eastern / North African, graduate student
Importance of educating cultural and medical terminology
“And then, at that time, it was like I don’t feel comfortable in my body, and then growing up and realizing that I was actually experiencing gender dysphoria. But, when I would talk to my health teachers about it, they were like, Oh, you’re just going through puberty. That was very disappointing. I would get a lot of misinformation just because either my teachers weren’t well-informed, or they just didn’t think that it was necessary to tell me.” - 21, non-binary, queer, bi-racial (black and white), college student
II. Two most important insight when deciding which resources to be included
LGBTQ+ Stories and Experiences
“I think it’s good to look at where the source is coming from though, especially when the things that I’m relying on are personal accounts of people’s experiences. I want to make sure that this person is coming from a personal experience where they believe similar things that I believe”
Participants emphasized that resources from people with shared identities and experiences allows them to connect with other LGBTQ+ people. Furthermore, resources that detail stories from people of shared identities foster trust with the information present. Especially for people from rural areas of environments that are not accepting, social media platform provides them with the safe space they do not have access to, and LGBTQ+ stories only reinforces the sense of community they didn't feel they had growing up. Having access to personal experience stories will equip LGBTQ+ people with resources they need to find the testimonies of healthcare experiences without having to risk being outed or enter pervasive spaces.
Intersectionality
“I’ve definitely read up about what is it like to use a dating app as a Muslim woman who wears a hijab or what is it like to be queer and Arab and queer and Muslim? How have other people navigated those spaces and carved out those identities for themselves?”
“I think something that would have been really helpful for me would have been...or some topics that to see would be like discussions around racial or religious identity and sexual and gender identity, I think. Because I think that also does feed into community. And I think for a lot of people, there's this two way push of your community, won't accept you if you're like this, but also Western society or media or whatever, being like you can't be queer and also this thing. You have to pick one.”
Coined by Kimberle Crenshaw, intersectionality is a framework that defines a person's experience as influenced by their intersecting identities inorder to understand the prejudices people, particularly marginalized communities, face. LGBTQ+ people with multiple marginalized identities (socio-economic class, disabilities, people of color) are underrepresented and not given ample attention they deserve. Even so, LGBTQ+ people may be faced with unique circumstances such as geographical location, being an LGBTQ+ youth, unaccepting communities, and more that hinder their access to healthcare needs. In the redesign process, we will integrate intersectionality by taking to account the multiple identities, circumstances, and environment that would otherwise be overlooked.
Card Sort/Code Key Findings Identified
01
Convenient and accessible options to talk to providers, seek resources that would otherwise not be available in their area and to ask comfortably
02
Resources not only for LGBTQ+ youth (for all identities, those who are not out, in unaccepting environment), but also for providers, parents, educators, and allies
03
Trust resources that have been used by folks who have been used by other people before and found beneficial, desire for community
04
Technical components of the design - accessible, inclusive, intentional, informative & appropriate graphics, inclusive language
DESIGN ITERATIONS
Data Driven Design Goals
Goal #1 - Centralize
Have a centralized page to immediately give users a better understanding of CHAI
Goal # 2 - Faster searching
Redesign the CHAI website for users to search and find resources specific to their healthcare needs
Goal #3 - Information Architecture
Reorganize content in a more effective showcase for multiple audiences
Goal #4 - Emphasize imagery
Design the website to emphasize accessible, relevant, inclusive, and appropriate graphics and illustrations
Style Guide
Low-fi Wireframes
High-Fi Mock-up Iteration
User Testing
Christian presented these mock-ups to the CHAI staff and Action Committee for feedback and user testing that was later iterated several times to fit the users’ needs.
Feedback
Iteration Change #1: Filters
The filtering layout makes it seem like filtering is required. If users are to use the filters, it leads a long scroll, which can be cognitively overload the users and present too much (perhaps unnecessary information) on screen.
Addressed:
Instead of filtering selections present, filtering is optional, allowing users to open or close the filtering option, which in turns reduces scrolling fatigue. The colors used were changed to be more visually accessible and consistent on the site. There are multiple ways to hide filters including hiding each filter category section.
Iteration Change #2: Overall site
The icons used should be relevant to users and aligned with the groups they are representing. Reduce the number of text present by using more detailed graphics, so users can make a decision quickly.
Addressed:
Use pictures instead of icon to visibly represent the groups the resources are tailored towards. Any descriptive text that was not needed in the home page was taken out for clarity.
PROTOTYPING
Design Sections (MVP)
Design Section #1:
Create a landing page contains mission of CHAI website, resources, and events
A landing page of all the resources brings the users to the resources, events, and description of CHAI right away (than merely using the hamburger menu). This different forms of accessing the same information appeases to different use cases.
Design Section #2:
Resources page with a filter
A critical feature included is the filter feature, allowing users to find all the resources they need than browsing through an endless list, bringing them to the right resource that best fits their needs.
Design Section #3:
Section for providers, resources, and events page, and contact page
KEY DESIGN DECISIONS
From the user interviews and focus groups, the following key features were included to address the concerns and needs of our users (especially the unique needs of the LGBTQ+ community).
Night Mode
The website should be designed to foster the privacy and safety for LGBTQIA+ youth as they are using the application. This is especially salient for people who are not yet “out” to their family as LGBTQ+, and do not want their identities to be revealed.
"If I was like, in the closet, and I was trying to look up resources on CHAI, but my family was over my shoulder, this kind of like, brings a lot of attention to that. So maybe having like, an incognito mode for CHAI or like, trying to reverse the colors, like how they do it [on Twitter]. Twitter's got like a dark mode"
Filters for Resources
Users should be able to search and find resources that best meet their healthcare needs. Because the CHAI website includes a vast amount of resources, participants brought up filters as a mechanism to refine the user’s results to help them reach their end goal faster. The search and filtering feature provides users with the autonomy to search for their requested needs while also narrowing based on different criteria needs.
“Well, we were talking about who, what the different resources, who'll they'll be targeted towards, and I thought it would be helpful to organize the resources by who they were for.” - P5
COMPUTER-SUPPORTED COOPERATIVE WORK
The ux research and design process of the CHAI site is currently being revised into a research paper (co-authored by me, Dan Delmonaco (PhD Michigan Student), Oliver Haimson (Assistant Professor), Christian Paneda (Michigan HCI Masters Student), and Action Committee of CHAI for submission to various venues including Computer-Supported Cooperative Work (CSCW) - a top tier publication venue in social computing and HCI and many more!
MOVING FORWARD
01
Iterate a desktop version of the webpages
For the site to be agnostic and accessible across other devices, iterations upon the desktop version of the CHAI website needs to be implemented.
02
Make resources interactive
The resources on the CHAI website is static and is simply directed to external sites or purely text on screen. We want to synthesize the paper resources published from CHAI into interactive user experiences to improve user engagement.
03
Deliver website functions to community partner
Moving forward, we want to ensure that the site development is accessible, effective for the community partners to make changes to the content of the site.
REFLECTION
It has been a rewarding experience working on the research portion of the CHAI redesign in addition to the paper publishing of the results for CSCW. Amplifying the voices of marginalized communities through community-based participatory research and participatory design has only strengthen and served as a reminder of the importance of inclusive design practices.
Though my involvement primarily focused on the research end of the process, the research process was without a doubt of high impact. Translating the research insights into design decisions was critical to the website development. The inclusion of community-based participatory research and participatory design was valuable to developing a stronger foundation as an inclusive and accessible designer when working with marginalized communities. I've learned to synthesize and identify key findings from both quatitative and qualitative data to draw meaningful decisions. These skills are transferable and valuable for designers to create products that are truly data-driven.
Here are some of the highlights of what I have learned:
Design with communities, and not merely for
The involvement of a community-based participatory research and pariticipatory design process requires that we move beyond usability testing with users and to designing with our users to truly design products for needs. It is not sufficient to design for user groups with unique circumstances without an understanding of their behaviors and motivations. Working with our community partners to recruit participants and interactive design sessions is a powerful pavement to understanding LGBTQ+ youth's priorities and community values, putting them at the center of the design process. The exposure to these techniques and practices has really given be a deeper understanding of realities of how we truly design for users, with practicality and without drawing assumptions.
Never underestimate the power of ux research
User research is foundational - without question. Having fully immersed myself into the research process in the CHAI project has proven itself to be extensive, yet a valuable component to the design of the site. There is no direction without the data, the testaments, and evidential support that tailors the design to the targeted users. Especially with our user base revolving around LGBTQ+ youth, we can not truly understand what their needs are without gathering data and working with them. The interviews with LGBTQ+ youth participants guided what resources we wanted to prioritize than sorting and presenting multiple resources that only hinder their search process. How we think our users behave and what they envision is not substantial in our decision-making process. UX research prevents us from making those mistakes.
HIGHLIGHTS