User research with disabled people and their families

This guide contains recommendations for carrying out user research with disabled people and their families. The recommendations will help user researchers to create research sessions for disabled people and their families that are:

• inclusive
• accessible
• comfortable

The guide draws on research with disabled people and their families. It is based on their lived experience and feedback. The focus is on disabled people and their families. These recommendations will benefit all participants.

Include disabled people from the start of your project in the planning and research design. This is the best way to improve accessibility and inclusion.

You can read about how we created this guide on our team blog. 

Giving disabled people clear information helps them to decide if they want to take part. People need to know what the research is for and what it will involve. This can also help to start building trust from the beginning. Disabled people and their families said they want researchers to:

• Be clear on what the research is about and its aims. Especially if and how the research can help disabled people and their families.
• Be clear on the incentive for taking part.
• Explain the ethics of the research.
• Explain how you will use data and who you will share the data with.
• Be clear on how participants could be eligible for the research.
• Have different ways people can take part. For example, a Microsoft Teams meeting, phone call or in-person. Adapt activities for different needs.
• Tell people how many people will be in the session.
• Be clear how long the session will take and provide an agenda.
• Explain if people will need to travel for the research and if you will pay their travel costs. Provide an alternative way of taking part if travel is not possible for the participant.

Using the right language shows that you respect and understand participants. It also means everyone has an equal opportunity at participation. This reduces power imbalances.

• Use social model language or respect the language that a participant wants to use.
• Clear, simple language without jargon makes research more accessible and helps avoid misunderstandings.
• If something is not understood, rephrase it.

Ensure that the session will be accessible for the participant. Make sure that they feel comfortable taking part.

• Use one point of contact to avoid confusion and build a rapport.
• Ask for any adjustments, access needs and preferences.
• Take time to talk to a participant before a session. This can be via email or on a call. This helps to make a participant feel comfortable. It provides an opportunity to understand and meet their needs.
• Practise using the tools needed for the session with a colleague. You can identify potential barriers they may create and think about alternatives.
• Offer participants a chance to practise things they will need to do in the research session before the session. For example, screensharing.
• Be flexible with when and where sessions can take place. Adapt to participant energy levels, work, caring commitments and comfort levels.
• Be flexible with how long a participant can do a research session for. Be prepared for this to change during a session. Offer the option to come back another time or stop.
• Ensure materials and resources are accessible. Use clear language without jargon.
• Send resources to participants in advance. Explain the format of the session. Ensure that there are no surprises. Tell participants if the session involves talking about sensitive topics. Be aware that people will have different opinions on what is sensitive.
• Plan in-person research to take place in an environment which is calm, quiet and private. Check the venue has facilities that are accessible for the participant.
• Send an accessible consent form before the session. Go through it with the participant to make sure they understand and agree.

The beginning of the session is important. Set expectations, clarify any adjustments and help the participant feel relaxed.

• Introduce the research again and its aims.
• Address the participant by name.
• Introduce everyone on the call and what they will be doing during the session.
• Remind the participant how the session will take place and the activities.
• Explain the agenda and when there will be breaks. Emphasise that participants can take a break at any time or end the session if they want to.
• Let participants choose how they want to be present. For example, having their camera off or on, and speaking using the microphone or via the chat function.
• Explain how to use the tools needed to meet the participant’s needs or preferences. These could be captions, the chat function and other tools.
• Ask how participants want to talk about a specific topic. This is particularly important for sensitive subjects such as death. For example, would they prefer to talk about the death of a specific person, or more generally. Read our blog on testing content about death.
• Explain that it is a relaxed session, and that there are no right or wrong answers.
• Make it clear how valuable feedback is. Emphasise that participants can be critical.
• Ask the participant if they have any questions.

It is important to maintain a comfortable environment for participants during the session. All participants are different. The approach may be different according to their personality, confidence, adjustments and needs. While data collection is important, the comfort of the participant is more important. Throughout the session:

• Practise active listening and ensure participants are heard. Listen with compassion and take feedback seriously.
• Use clear language. Rephrase questions if they are not understood.
• Let participants have space to talk. Some participants may be less focused on questions, tasks or content and need a space to talk and be heard. Gently guide participants back to the topic. Do not put any pressure to complete the session in a specific way.
• Be patient and do not rush to get through activities or finish.
• Have breaks and check whether the participant is happy to continue with an activity.
• Give time for the participant if a topic is difficult for them to discuss. Take a break and check whether they want to continue. Follow safeguarding procedures.
• Thank a participant if they have shared feedback, a story or an experience.

To finish a session:

• Ask the participant if they have any other feedback or anything they would like to share before finishing.
• Recap the main points the participant raised.
• Take 5 minutes with the participant to debrief and cool down.
• Always finish on time unless the participant has said that they want to stay for longer.
• If you did not complete all the activities, give the option to spend some extra time together. Offer to come back another time to finish if they want to.
• Acknowledge the participant’s contribution. Recognise the value of chatting with them and getting their feedback.
• Explain who will contact them after the session with any extra resources.
• Explain how and when the participant will receive their incentive.
• Explain what will happen next with their data and the research project. Tell participants when they will hear about the results of the research.

It is important to continue communication with a participant even after the session. Follow up with thanks, feedback and research findings. This helps people feel valued and shows their time made a difference.

• Say thank you and provide any feedback for the participant.
• Provide incentives as soon as possible.
• Signpost to services or information that may be useful to the participant.
• Keep communication with a participant open. Provide the opportunity to give any other feedback that may come to mind after the session.
• Share the results of the research with participants. Explain how their data was used and what the outcome of the research was.
• Collect feedback from the participant on their experience of the research. Use this to make improvements.

In unmoderated research like a survey, make the activity as accessible as you can.

• Give participants the opportunity to answer questions in their own words. Provide open text boxes.
• Say how long the activity will take and how many questions there will be.
• Have the option to pause and come back to an activity while saving progress.
• Provide contact information.
• Offer adjustments if the activity is not accessible.
• Give a closing date so participants can decide if they want to come back to it or complete it now.
• Make it clear when participants have reached the end and if they need to do anything else.