Preparing for research is like planning a road trip: it’s a lot of work, with many details and considerations to figure out. Illustration by Emma Siegel.

Preparing for Research with People with Disabilities

You’ve reached out to disability communities to build relationships and partner on research. Now to prepare for your study.

Asking About Accommodations

When preparing for your research session with participants with disabilities, there are a number of accommodations you will need to consider to make your participants feel as comfortable as possible.

• Ask early, and ask everyone about accommodations. Don’t assume a study participant won’t need accommodations. By asking about accommodations, you shift the burden of accessibility away from the person with a disability. Consider asking in the scheduling email, after the participant has been recruited. Here is sample language for inviting participants to ask for accommodations:
  Please let me know if you might require any accommodations during the meeting (such as specialized technology, a break for concentration, a sign language interpreter, etc.). I will do what I can to ensure an accessible experience.
• Assume the person is an expert about their own accommodations. If someone discloses that they require accommodations, let that person explain what they need. What works for one person with a disability might not work for another person with the same disability. If the participant requires a caretaker to come to the session with them, make sure to compensate the caretaker for their time as well.
• Inform the participant if the study may entail recalling triggering stories. Some participants may not feel comfortable recalling certain stories related to their disability/disabilities. Provide context for your research, and give potential participants the opportunity to decline participation if they don’t feel comfortable with the research topic.

Participants may also ask for any of the accommodations below, which you should plan ahead to have ready at any point:

A non-exhaustive list of accommodations that participants with disabilities may need.

Research Methodology Considerations

To help you think about methodologies to use when conducting research with participants with disabilities, we’ve compiled a non-exhaustive resource of considerations. Always remember to ask what kind of accommodations people will need to participate in the study, in addition to these considerations.

Mobility

Some people with mobility needs might have limitations in terms of dexterity. If conducting something like participatory design or pre-session homework, where participants are required to write or draw, explain what the activity will entail beforehand, and ask if they will need assistance to participate—don’t assume they may not be able to.

Blind or Low Vision

Once code is involved, any person with visual impairments can participate with the use of a screen reader. When a build is ready for employee testing, this is usually a good time to test it with blind or low-vision participants.

Early designs (e.g., conceptual mock-ups, wireframes) can easily be tested with people who have low vision or are colorblind. Alternatively, the facilitator could narrate the user interface for someone who is blind and tech-savvy.

Deaf or Hard of Hearing

A virtual interpreter may be needed. Hiring a sign language interpreter to sign into your interviews may be an accommodation your Deaf or hard of hearing participant will ask for. Look into vendors who provide these services, such as Interpreter Now.

The chat feature in some video conferencing tools may be used with those who prefer written communication. For instance, Webex, GoToMeeting, and Google Hangouts have chat features that may work for remote 1:1 or group sessions. Some video conferencing tools also now include automatic closed captioning.

Surveys may not always be legible for Deaf respondents. As we learned from Melissa “echo” Greenlee, some Deaf people whose primary language is a sign language will not be able to fill out surveys in English because English is not their primary or native language. They may prefer to see the survey in a sign language instead. It is worth looking into vendors that can provide translations for surveys.

We want to acknowledge that we haven’t included considerations for neurodivergent participants, since we have not had as much experience conducting research with them.

Prototype Considerations

The prototyping tool you use will impact the prototype’s accessibility for different types of participants. At the moment, we don’t know of any prototyping tools that can create screen reader and/or keyboard-accessible prototypes. These tools are also not very accessible for designers who use screen readers. If possible, use prototypes built with code that can be more accessible to designers. We encourage you to reach out to vendors and services to ask about the accessibility of their prototyping platforms.

If you are creating content (like a screener, prototype, or any material the participant will need to access), make sure you follow accessibility guidelines. These guidelines should apply to the research at hand, but they should also reflect the content your team plans to include in the final experience. It would be counterproductive to make accessible content for your study, but inaccessible content for your delivered experience. Here are some points to consider for accessible content:

• Use high contrast colors.
• Avoid excessive and confusing language for easier readability.
• Provide image descriptions when necessary (via alt text or explanations of the images).
• Ensure specialist equipment or considerations are in place for guests with limited hand function.
• Caption videos.

The majority of remote experience research tools are not fully accessible. If you are testing remotely, adjust the remote video software according to the needs of each participant. It is best practice to ask each individual participant what software they are currently using and/or prefer to use to communicate with their families and friends.

Preparing the Research Discussion Guide

To build rapport and ensure that you create a safe space in which participants with disabilities will feel comfortable sharing their experiences, here are some questions that you can add to your study. We recommend adding some of these questions to the “background interview” section of your session. Remind participants that answering these interview questions is completely voluntary and that they can share as little or as much as they’d like.

1. What are your pronouns?
2. Are there any identity categories that are important to you (e.g. ethnicity, gender, ability status, etc.)? I am asking because I want to have a more holistic picture of the person from whom I’m learning.
3. Do you identify as having a disability(ies)/impairment(s)/chronic illness(es)?
4. In your own words, how do you describe your disability(ies)/ impairment(s)/chronic illness(es)?
5. How would you like me to refer to your disability(ies)/impairment(s)/chronic illness(es)?
6. Can you describe any accessibility tools or assistive technology that you use?

Like the keys to a car, consent sets a level of trust and safety that can help unlock a conversation. Illustration by Emma Siegel.

Consent

Obtaining consent is one of the most important aspects of conducting experience research. It helps to maintain trust between you and your participants. Without obtaining consent, you risk participants feeling uncomfortable with providing their point of view in the session. Informed consent requires us to provide clear information, enable participants to say no, and understand what we’re asking of them and what we’re promising in return. Furthermore, it involves following through on what was promised to the participants.

The process of obtaining consent must be adapted to fit each potential participant’s access needs and must ensure that the participant fully comprehends and has full agency over the situation. When it comes to obtaining informed consent from participants with disabilities, it’s especially important that your consent process takes into consideration the following details.

Agreement on Access and Comprehension

The consent document you provide to a participant who has agreed to join the session must be accessible, whether that means that it is offered via assistive technologies or written without confusing jargon. Moreover, it’s not enough to just provide participants with a document to sign. You must ensure that participants understand what they are signing, providing time for any questions at the outset of your study.

Consider these important questions:

• Is your agreement easy to read? Does it contain too much jargon?
• If working with low vision or blind participants, can your agreement be read and signed via a screen reader or other assistive technologies?
• Do potential participants have enough time to read and ask questions about your agreement prior to signing the document?

Confidentiality of Shared Information

Due to the sensitive nature of disclosing personal health information, it’s important that both your consent agreement and the processes you use to handle personal data reaffirm participants’ privacy.

Ask yourself:

• What does your consent agreement say about how you handle personal information shared in a research study? Are you ensuring that this information is appropriately managed?
• How do you currently store personal and sensitive data? Can these methods be improved?

Voluntary Participation Throughout the Session

To ensure that participants have agency throughout the research session, it’s important that you frame interview questions in a way that allows them to feel comfortable not answering, if necessary. Reminding participants that their participation is voluntary is key to helping them maintain control of the situation.

Ready for more?

You’re fully prepped and ready to go — here’s how to run your research study with people with disabilities!