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Welcome to Progress in Community Health Partnerships’ latest episode of our Beyond the Manuscript podcast. In each volume of the Journal, the editors select one article for our Beyond the Manuscript post-study interview with the authors. Beyond the Manuscript provides the authors the opportunity to tell listeners what they would want to know about the project beyond what went into the final manuscript. The Associate Editor who handles the featured article conducts our Beyond the Manuscript interview. In this episode of Beyond the Manuscript, Associate Editor Haera Han interviews Christina Nicolaidis and Dora Raymaker, authors of “Community based participatory research to adapt health and violence measures for use by people with developmental disabilities.”
Dr. Nicolaidis, thank you for your time today. We also have another author of this paper, Dr. Raymaker, in queue. To give our audience an orientation to your project, can you please provide a brief summary of the project, perhaps highlighting its purpose and the main points you address in the paper?
Okay. So this paper addresses a part of a larger project. Our partners at the University of Montana, and Portland State University, and our various community partners, we worked together to conduct a survey about violence against people with developmental disabilities. The part that this paper addresses is how we used community-based participatory research (CBPR) to actually make it be possible. The issue is that people with developmental disabilities often get excluded from research because there can be a number of different challenges in terms of including them as research participants, and when you get to something as sensitive as an issue around violence against people with developmental disabilities, it’s really important that we get the information from participants themselves. It doesn’t really make sense to ask a proxy about the violence that they either don’t know about or may have perpetrated. It just doesn’t make any sense.
So we had to find a way to be able to actually get, you know, reliable, valid, useful information directly from people with developmental disabilities. We also had to do it in a way that would not necessitate mandatory reporting, because they’re a protected group and so we had to find a way to do it anonymously.
So this paper is really talking about how we use the CBPR process to adapt currently existing measures to be more accessible to people with developmental disabilities, and then some of the psychometric testing we did to make sure that it was actually okay. [End Page 171]
Sure. So when I was reading the paper, I read it with much interest and I was intrigued by the paper in that it really offers this community perspective, which has not been well-addressed in the literature. You just talked about some of these challenges and the uniqueness of the population. So I wonder if you could tell us about how the health partnership described in the paper was started in the community.
Well, so this particular project was a little bit different than many of the other CBPR projects that I’ve been involved with or that Dora’s been involved with. This one—actually, the CDC [Centers for Disease Control and Prevention] put out a call asking for research around the association between violence, health, and disability in people with developmental disabilities. We thought it was a very important topic and the CDC call didn’t say anything about CBPR.
We said, you know, really this can best be done using a CBPR approach. In fact, I really believe it’s the only way to do this is to use a CBPR approach. So the academic partners, we’d all had various connections in the past with each other, we started talking about how this would be an interesting possibility, and we each had longstanding relationships with community organizations that work with people with developmental disabilities outside of this project. So we were able to go to...