Participatory Research

Module 4. Introduction (Duration: 20 seconds)

- Hi, my name is Nicole. In this module, you will learn how to get started with doing research with community partners. You will also learn how to come up with a research question. Finally, you will learn about research methods and how to include different people to work together.

Module 4: How to do CPAR.

Lesson 1: Getting started
Lesson 2: Research questions
Lesson 3: Research standards
Lesson 4: Safe research space
Something to think about.

Lesson 1: Getting started

It's never too late to get started with CPAR. Developing relationships and trust takes time. There are lots of ways for community partners and researchers to work together. The important part is to take the first step.

Getting started for researchers

Researchers can reach out to community members: invite past research participants to talk about your research; reach out to people within your institution; work with your accessibility office to share information about your work; let the public know how to contact you to learn more about your research.

Non-autistic researchers' perspective

Summary: Many community partners want to help. Reach out to people you already know with lived experience. Get feedback on your current work no matter where you are in the process. (Video duration: 1:49)

- Hi, my name is Liliane. One challenge with doing participatory autism research is just to get started.
Oftentimes, research teams have funding for a research project that's already going on, and they may not have planned time and resources to hire a community partner on their team. And so, it becomes this series of pushing it too later to start doing it.

A lot of community partners don't ask to be paid. Obviously, if you can have some funding internally from your institution, that is great, but don't take that as an excuse if you don't have the funding.

If you have a project going on already, reach out to people, maybe previous research participants, and tell them you want to talk about this project that you're leading and get their input on it.

As you improve what you're doing, you're going to have new ideas. As you listen to your research partners, then you're going to be in a great position to write this really nice new grant that does have input from your community partners from the beginning. And you'll have thought about what you need in order to engage them in that new project in terms of time, resources, and salaries.

So, I'm so excited you're interested in doing participatory research with community partners and know that there are many people in the community who are just waiting for you to reach out to them.

Getting started for community members

Community members can reach out to researchers: look for researchers who are working on topics of interest to you; participate in a research study and develop a relationship with a researcher. If you have an idea that you want to develop, you can look for collaborators. There is now grant funding available for studies initiated by community members. See the optional resources to learn more.

Autistic research partners experience

Summary: Zeph talks about how they got involved with the UVM Autism Collaborative. They also talk about how they met a researcher and worked with them. They did qualitative analysis and other research tasks. (Video duration: 2:33)

- So, my name is Zeph and I'm an adult-diagnosed autistic. The way that I got involved with the UVM Autism Collaborative is that I answered an ad for one of the researchers to do one of their research projects, and it was this really cool project where they put this neural network of electrodes over your head and had you watch cartoons and answer questions about language. And throughout the course of the several meetings that Emily and I had to do this research project, we kind of developed a rapport.

And then it was a couple months later that I got an email from her and she's like, "Hey, I know you like research and we have this collaborative where autistic people are involved in research, and would you have an interest in being a part of it?" And I think I like, wrote out my application to be a part of it before I even joined a meeting. And my first meeting, they voted on my participation in it.

At one of the Autism Collaborative meetings, we all go around and we all introduce ourselves and talk about what our interests are. And I am really interested in adult-diagnosed autistic issues. So, when Laura mentioned that those topics were of interest to her, I just reached out to her and I'm like, "Hey, I'm really interested in the topics that you're working on. Let me know if I can help out with anything."

And from there, we just created a really cool working relationship. We generally will have meetings on a weekly basis where we do co-work with other autistic partners, and then there's some stuff that's assigned in between the meetings for us to read up on. But we've done qualitative analysis as a part of the group work. But a lot of um. One of the projects we’re at the phase where we're working on a lot of the language regarding the IRB and the disclosures and the recruitment materials, and how to best convey the information that we need to convey. But how do we also collect the information we need while being respectful of equity issues.

It's been fun. I've learned a lot.

Making connections

Parent and self-advocacy organizations can help with connecting researchers to community partners, sharing what they know about research needed by the community.

Other resources include University Centers of Excellence in Developmental Disability or , State Departments such as health, education, disability services, local hospitals or health centers.

Lesson 2: Research questions

Research starts with research questions that are important for the community. Then we search to see if an answer already exists. Finally, we decide if and what research is needed.

• Question from the community.
• Does an answer exist?
• Is new research needed?

What's in a research question?

We use the abbreviation PICOT to help us understand what's in a research question. “P” is for person, “I” is for intervention, “C” is for comparison, “O” is for outcome, and “T” is for time.

A problem important to the community

The stories and experiences of community partners have many elements of a research question. Example, an autistic young adult on a research team says, "I go to the doctor as little as possible because they do not know how to speak with me. Doctors need more trainings about autism."

Using PICOT to create a research question:

P: for autistic young adults
I: would providing autism training to doctors
C: compared to doctors who don't have training
O: improve satisfaction
T: at the first visit to a new doctor

"For autistic young adults, would providing autism training to doctors compared to doctors who don't have training, improve satisfaction at the first visit to a new doctor?"

Does an answer exist?

PubMed and Google Scholar are helpful tools to find existing research. Use two or three keywords from the research question to search for information.

Example: doctor training, autistic adults, satisfaction.

Is new research needed?

Discuss the existing research as a team. Summaries in plain language can help everybody participate. Change the research question as needed. Decide if or what new research should be done.

Lesson 3: Research standards

A research team needs to balance multiple priorities: research needs to be ethical and safe to protect research participants; methods must be used that allow results to be trustworthy; the research study must meet the requirements of the funding agency.

Research ethics

Each research organization works with an Institutional Review Board or IRB. The IRB is a group of people that includes researchers and people from the public. They review research proposals to make sure they respect the Belmont Principles.

Belmont Principles

The Belmont Principles are rules that need to be followed for doing ethical research. They include:

• Respect for the person: the research subjects can choose if they want to participate and stop any time. There are clear steps to make sure confidentiality is respected.
• Beneficence: The benefit from the research is more important than the harm it may cause. Methods are used to minimize potential sources of bias.
• Justice: The research is fair and equitable. It includes diverse participants to share the benefits and also the risks from the research.

Research methods

Research methods are ways to collect and analyze data. Choosing the right research methods helps us have confidence in study results.

Qualitative methods: Qualitative methods are ways to learn about ideas and experiences. They include tools like interviews, focus groups, observations of behaviors, observations of objects, texts, art, etc.

Quantitative methods: Quantitative methods focus on measuring quantities. The data is analyzed to find patterns or averages. Quantitative methods use tools like surveys, questionnaires, test and measures.

Mixed methods studies combine both qualitative and quantitative methods. Optional resources.

Funding agencies

Funding agencies have requirements that need to be respected: timelines, budget, research priorities. These requirements may affect what study is accepted for funding.

When a study is accepted for funding, it may be hard to make changes. Timelines and budget should be planned with flexibility in mind.

Lesson 4: Safe research space

Here are some basic guiding principles for building a safe research space. Make sure everyone knows what to expect. Use group norms and facilitation. Respect people and their need for confidentiality.

Building trust requires a safe research space but also being brave to learn together.

Challenges for community partners

Some community members have had negative experiences with research in the past. They're sometimes concerned that their input will not be valued, and their time will be lost. Community members may need time to trust researchers and feel heard and valued. They want to be treated with patience and respect.

Challenges for researchers

Researchers want to do a good job at including community members and making sure they feel heard and valued. They're working hard to overcome their own internalized ableism. They may be afraid to make mistakes. They may struggle to explain that research standards get in the way of what community members want to do.

Tips for clear expectations:

• Agree on the research team's goals.
• Understand each person's individual goals.
• Understand where the funding for a team or project comes from.
• Clarify the research process and each person's role:
  • How people meet and share information.
  • Timeline for tasks and flexibility.
  • How decisions are made.
• Understand how power is shared within your team.

Group norms and facilitation

You can help create a safe research space when you share information and materials in a way that's accessible for everybody; take time to understand each other; give team members time to process and respond; welcome different perspectives; share the concerns you have; ask people to explain something you don't understand.

You will learn more about creating a safe space in the Working Together training.

Confidentiality

Confidentiality for study participants is a part of the standard of research. Confidentiality for research partners is different. Research partners are not study participants. It is important to be clear about the level of confidentiality to expect from research team members. People may share personal stories and details about their life. Sharing people's information or ideas should only be done with their permission.

Important considerations

Mandated reporters: Remember that team members may be mandated reporters. They must report if someone is unsafe at home or at risk of being hurt. This is important to state up front. It may affect what people choose to share.

Self-advocacy: Sometimes parents and their child or adult relative are on the same team. Each person should have space to communicate for themselves.

Something to think about: What skills and expertise are you excited to bring to autism research?

Check all that apply:

• Lived experience
• Creativity and problem solving
• Organizational skills
• Plain language and accessibility
• Writing or editing skills
• Summarizing complex information
• Social media or public speaking skills
• Math, statistics, or computer science
• Making people feel safe to share their experience
• Other

You are now done with the last module. Click on Next to continue to the activity and click on Finish to get your certificate.