People with DD want to understand and participate in research

By Katherine McDonald, PhD
David B. Falk College of Sport and Human Dynamics, Syracuse University

Research can improve quality of life for people with developmental disabilities (DD). However, there are a lot of questions about how to safely and respectfully include adults with DD in research. Adults with DD have not had many opportunities to share their experiences and opinions on this topic. Without this information, it is difficult to devise and deploy community-supported research practices.

What did you do in your research?
We worked with two research advisers with DD to make sure our research materials were understandable and respectful.

We recruited adults with DD who:
  • had been in a research study before,
  • did not have a legal guardian, and
  • were interested in and able to participate in individual and group interviews

We recruited participants through self-advocacy groups, personal communications, case workers, and disability researchers. We met with people who were interested to talk more about our study. We also told everyone that they could bring a support person if they wanted to, but no one did.

To make sure everyone understood the information about the study, we often read materials out loud with participants. We answered questions and asked participants to explain the purpose, risks, benefits, and procedures of the study to make sure they understood everything.

In almost all cases, people decided to participate in the individual interview right away. In the interview, we asked participants to share their experiences and views on inclusion, recruitment, decision-making, safe-guards, risks, and benefits of research. We interviewed 16 adults with DD.

After we did the individual interviews, we created a summary of our findings. We then did group interviews with the same people, although only 12 of them were available and interested. We asked people whether our summary was accurate, and whether they wanted to correct or add anything.

What did you find out?
From our participants, we learned that they felt it was important to participate in research, especially research that can help them and their community. Our participants were particularly interested in research that could improve quality of life, and that helped them teach researchers about their lives. They were also interested in learning new things, having new experiences, and meeting new people. And, they thought it was important for researchers to show they valued their contribution and acknowledge that many adults with DD don’t have much money by compensating research participants.

We also learned that our participants thought that everyone with DD should be able to learn about opportunities to participate in research. Participants said that researchers should send materials in the postal mail, place advertisements in newspapers or television, call people, have a website with information, or learn about research opportunity through case managers and friends.

When we asked their thoughts on research materials, participants recommended that materials should be brief, use visuals, provide demonstrations of research procedures, and include feedback from prior participants. They noted it might also be important for researchers to explain the study, read and review materials aloud, and answer participant questions.

Participants also talked about how important trust is. Participants preferred to learn about research from people they know and trust to help them determine the value and appropriateness of the study. These people included service providers who can maintain individuals’ privacy or friends and peers who have been in the study and can share their experience. On the other hand, some participants expressed being open to researchers contacting them directly.

When deciding to participate, all participants said they should be in charge of their decision because they are confident in their decision, are adults, and are capable of making decisions. For individuals who sometimes seek advice when making a decision, participants said that they want to discuss participation with people they trust. These trusted individuals include service providers, intimate partners, and family members. Participants also expressed that if they bring someone to provide support with them, researchers should directly address them, not the person providing support. Even if an individual receives support, participants expressed the importance of still being able to make their own decisions about participation.

Last, participants felt that the decision to participate should be up to them, and some have declined participation in the past. They also felt that they could stop their participation at any time, and researchers should not push them or use incentives to force participation or responses. However, a few participants said that it can feel hard to say no sometimes, especially in the presence of a service provider.

What are the take-home messages?
  • Adults with DD value being in research, especially research that can help them or others like them.
  • Adults with DD want to understand research, so they can make their own decision about participating or not. Researchers should do things such as include concrete descriptions, visuals, explanations, and demonstrations to help adults with DD understand.
  • It is important for researchers to create and use research practices that help adults with DD control their research participation.
  • Adults with DD want to learn about research from individuals they trust, select people they trust to provide input, and assess whether they can trust researchers in making participation decisions.

To learn more about these findings contact
Katherine McDonald.

Full Journal Article
McDonald, K.E., Kidney, C.A., Patka, M. (2013). ‘You need to let your voice be heard’: research participants’ views on research. Journal of Intellectual Disability Research, 57(3), 216-225.