2010 AUCD Annual Meeting November 1, 2010
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Transcript of 2010 AUCD Annual Meeting November 1, 2010
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Perspectives from the Perspectives from the Trenches: Using CBPR to Study Trenches: Using CBPR to Study
Violence in Adults with Violence in Adults with Developmental Disabilities Developmental Disabilities
2010 AUCD Annual Meeting
November 1, 2010
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PresentersPresenters
Rosemary B. Hughes, Ph.D.
Rebecca E. Goe, M. A.
The University of Montana UCEDD
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AuthorsAuthors
Katherine McDonald, Ph. D.
Erin E. Stack, B.A.
Portland State University
Dora Raymaker, M.S.
Autistic Self Advocacy Network
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AuthorsAuthors
Emily M. Lund, B.A.
Rebecca E. Goe, M.A.
Rosemary B. Hughes, Ph.D.
The University of Montana
• We acknowledge our many partners who contribute greatly to the success of this project.
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About the ProjectAbout the Project
• RTOI funded by AUCD and CDC
• Contract #439 under Cooperative Agreement #811
• AUCD Project Officer: Adriane Griffen, M.P.H., CHES
• CDC Project Officer: Pam Costa, M.A.
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Purpose of the ProjectPurpose of the Project
• To identify strategies for including people with developmental disabilities in violence research
• To address the impact of violence on the health of people with developmental disabilities
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Studies in the ProjectStudies in the Project
• Measurement Adaptation Study
–Adaptation of measures
–Pilot studies
• CBPR Evaluation Study
• Disability, Violence, and Health Survey
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Partners in the ProjectPartners in the Project
• The Developmental Disability Community in OR and MT
• Steering Committee
• Community Advisory Boards
• Consultants
• Research Associates/assistants
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Steering CommitteeSteering Committee
• 4 representatives with DD from our partnering organizations :
-Autistic Self Advocacy Network
-Bitterroot People First
-Summit Independent Living Center
-Self Advocates as Leaders
• 4 investigators
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Community Advisory BoardsCommunity Advisory Boards
• Each state has a 6-member Community Advisory Board (CAB) that includes four people with DD, one family member of a person with a DD, and one service provider of people with DD.
• CABs meet at least once monthly
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CAB ActivitiesCAB Activities
• Advise on selection of measures for use in the survey study
• Advise on measure adaptation (e.g., alternative wording, links for more detail or definition of terms used, adding pictures or new items)
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CAB ActivitiesCAB Activities
• Advise on recruitment procedures, consent materials, and study protocol for the survey study
• Advise on revisions after taking the computerized survey via role play
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CAB ActivitiesCAB Activities
• Advise on revisions of the computerized survey to assure feasibility, accessibility, and administration of 90 minutes or less
• Advise on solutions to problems experienced in the field
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CBPR Evaluation Study CBPR Evaluation Study Year 1Year 1
Katherine McDonald, Ph.D.
Erin E. Stack, B.A.
Portland State University
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CBPR EvaluationCBPR Evaluation
• Methods –CAB focus groups
–Investigator and Steering Committee bi-monthly reflections
–Listserv communication
–Meeting minutes
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Preliminary Findings: Preliminary Findings: CAB Focus GroupsCAB Focus Groups
1. Participating in the CAB is positive, important, unique, and rewarding.
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“[There are] different insights with different people like the professional and the self-advocates and the investigators … you … learn from one another.”
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“It is revolutionary and ground breaking and who doesn’t want to be in on something that is revolutionary and ground breaking?”
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Preliminary Findings: Preliminary Findings: CAB Focus GroupsCAB Focus Groups
2. CBPR can change beliefs, give voice, and improve science
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“I am really enjoying that this project … is actually asking the people who have the expertise.”
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“People have respected me … people don’t treat me like I have a disability. They treat me like I am a person.”
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Preliminary Findings:Preliminary Findings: CAB Focus Groups CAB Focus Groups
3. Addressing violence is important and empowering.
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“The subject of the research project itself is something that I think needs to be examined”
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“People tend to think people with disabilities are immune to violence.”
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Preliminary Findings: Preliminary Findings: CAB Focus GroupsCAB Focus Groups
4. The CAB is a place of shared understandings, mutual respect, equality, and care
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“There are not too many opportunities that I have to contribute to something without having to worry about how I am different
than other people … I don’t need to explain myself and I can be myself. And then I can relax and then focus on what I
am here to do.”
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Preliminary Findings: Preliminary Findings: CAB Focus GroupsCAB Focus Groups
5. Early confusion and uncertainty has dissipated with experience.
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“When I first was coming into it, I thought I was being research[ed]”
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Implications of Preliminary Implications of Preliminary Findings Findings
• The way we conduct science has implications for how deep and nuanced we understand focal constructs
• CBPR may improve relevance, construct validity and representativeness
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Implications of Preliminary Implications of Preliminary Findings Findings
• Choosing to use CBPR signals respect for the expertise and abilities of the study population
• CBPR may not be appropriate for all research, and demands appropriate skills, resources, and expertise
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Implications of Preliminary Implications of Preliminary Findings Findings
• There is power and healing in addressing "sensitive" topics
• Establishing positive, well-intentioned relationships can help individuals navigate challenging moments in collaboration
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Thank You for Your ParticipationThank You for Your Participation
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Contact InformationContact Information
Rosemary B. Hughes, Ph.D.
Principal Investigator
The University of Montana Rural Institute on Disabilities
Phone: 406-243-2898
406-243-5476 Voice/TTY
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Contact InformationContact Information
Katherine McDonald, Ph.D.
Portland State University
Department of Psychology
Tel: (503) 725 – 3995
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ResourcesResources
• National Domestic Violence Hotline
• http://www.ndvh.org/
• 800-799-SAFE (7233)
• 800-787-3224 (TDD)800-942-6908 Spanish Speaking
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ResourcesResources
• RAINN National Sexual Assault Hotline
• http://www.rainn.org/
• 1.800.656.HOPE (4673) | Free. Confidential 24/7
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ResourcesResources
SafePlace Disability Services ASAP
512.267.SAFE (7233)
or512.927.9616 TTY for the Deaf community
http://www.safeplace.org