2010 AUCD Annual Meeting November 1, 2010

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

PresentersPresenters

Rosemary B. Hughes, Ph.D.

Rebecca E. Goe, M. A.

The University of Montana UCEDD

AuthorsAuthors

Katherine McDonald, Ph. D.

Erin E. Stack, B.A.

Portland State University

Dora Raymaker, M.S.

Autistic Self Advocacy Network

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.

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.

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

Studies in the ProjectStudies in the Project

• Measurement Adaptation Study

–Adaptation of measures

–Pilot studies

• CBPR Evaluation Study

• Disability, Violence, and Health Survey

Partners in the ProjectPartners in the Project

• The Developmental Disability Community in OR and MT

• Steering Committee

• Community Advisory Boards

• Consultants

• Research Associates/assistants

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

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

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)

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

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

CBPR Evaluation Study CBPR Evaluation Study Year 1Year 1

Katherine McDonald, Ph.D.

Erin E. Stack, B.A.

Portland State University

CBPR EvaluationCBPR Evaluation

• Methods –CAB focus groups

–Investigator and Steering Committee bi-monthly reflections

–Listserv communication

–Meeting minutes

Preliminary Findings: Preliminary Findings: CAB Focus GroupsCAB Focus Groups

1. Participating in the CAB is positive, important, unique, and rewarding.

“[There are] different insights with different people like the professional and the self-advocates and the investigators … you … learn from one another.”

“It is revolutionary and ground breaking and who doesn’t want to be in on something that is revolutionary and ground breaking?”

Preliminary Findings: Preliminary Findings: CAB Focus GroupsCAB Focus Groups

2. CBPR can change beliefs, give voice, and improve science

“I am really enjoying that this project … is actually asking the people who have the expertise.”

“People have respected me … people don’t treat me like I have a disability. They treat me like I am a person.”

Preliminary Findings:Preliminary Findings: CAB Focus Groups CAB Focus Groups

3. Addressing violence is important and empowering.

“The subject of the research project itself is something that I think needs to be examined”

“People tend to think people with disabilities are immune to violence.”

Preliminary Findings: Preliminary Findings: CAB Focus GroupsCAB Focus Groups

4. The CAB is a place of shared understandings, mutual respect, equality, and care

“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.”

Preliminary Findings: Preliminary Findings: CAB Focus GroupsCAB Focus Groups

5. Early confusion and uncertainty has dissipated with experience.

“When I first was coming into it, I thought I was being research[ed]”

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

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

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

Thank You for Your ParticipationThank You for Your Participation

32

Contact InformationContact Information

Rosemary B. Hughes, Ph.D.

Principal Investigator

The University of Montana Rural Institute on Disabilities

rhughes@ruralinstitute.umt.edu

Phone: 406-243-2898

406-243-5476 Voice/TTY

Contact InformationContact Information

Katherine McDonald, Ph.D.

Portland State University

Department of Psychology

kmcdona@pdx.edu

Tel: (503) 725 – 3995

ResourcesResources

• National Domestic Violence Hotline

• http://www.ndvh.org/

• 800-799-SAFE (7233)

• 800-787-3224 (TDD)800-942-6908 Spanish Speaking

ResourcesResources

• RAINN National Sexual Assault Hotline

• http://www.rainn.org/

• 1.800.656.HOPE (4673) | Free. Confidential 24/7

ResourcesResources

SafePlace Disability Services ASAP

512.267.SAFE (7233)

or512.927.9616 TTY for the Deaf community

http://www.safeplace.org