The Evolution of a Trusted Partnership Between Researchers and Culturally Diverse Families: Lessons Learned Ann Turnbull, Jean Ann Summers, and Denise Poston Beach Center on Families and Disability The University of Kansas 1200 Sunnyside Avenue 3111 Haworth Hall Lawrence, KS Phone: Fax: Website: IASSID-Europe, Second International Congress August, 2006

1 COMMITMENT TO PARTICIPATORY ACTION RESEARCH (PAR) PAR is a process which involves ensuring that the beneficiaries of research are partners in all aspects of the research process from initially specifying questions/ writing the proposal to the stage of knowledge translation/utilization.

2 Level 6 Families as Research Leaders and Researchers as Ongoing Advisers Level 5 Researchers and Families as Co-researchers Level 4 Researchers as Leaders and Families as Ongoing Advisers Level 3 Families as Occasional Reviewers and Consultants Level 2 Families as Advisory Board Members Level 1 Families as Research Participants Typically does reflect PAR Typically does not reflect PAR Families have greater decision-making

THE PARTNERS Beach Center on Disability 3

THE PARTNERS 4 Grassroots Consortium on Disability

5 MISSION To conduct research and comprehensive knowledge translation in order to make a significant and sustainable difference in quality of life of families and individuals affected by disability. To provide individualized, flexible, and comprehensive services to families in underserved communities, most of whom experience poverty. Beach CenterGrassroots

6 RESOURCES 40 staff – mostly Ph.D.s or students working on Ph.D.s Approximately 2.5 million annual budget and 2.5 million endowment. Loaded with technology resources. 14 small programs with each having about two part-time staff; Typically funding less than $5000; No resources for computer, long-distance phone, or fax. Beach CenterGrassroots

7 DIFFICULT AND PAINFUL BEGINNING Beach Center researchers were target of “research animosity”. Easy to become defensive. Unprepared for time required to earn trust. Grassroots leaders demanded “immediate and direct benefit”.

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9 PARTNERSHIP STRENGTHS Beach CenterGrassroots Consortium on Disability Knowledge about researchKnowledge about underserved families National visibility/connectionsConnections to underserved families Rich in majority culture resources – financial, organizational, professional training Rich in minority culture resources – cultural awareness, sensitivity, credibility with families

10 LESSONS LEARNED IN EARNING TRUST Don’t give up – persevere through the tension. Seek opportunities for collaborative activities related to work and then “hang out” to get to know each other as people. Recognize and affirm each others’ strengths.

11 Visit each others’ work settings and communities and confront the realities of difference. Recognize that all activities will not equally benefit both partners simultaneously. Be honest in addressing “money privilege” and inequalities. Concede time efficiency and recognize that earning trust will likely take longer than ever imagined.

12 HIGHLIGHTS Partnering on family quality of life research. Facilitating focus groups Participating in data analysis/interpretation Wording items for scale Field-testing scale Conducting studies using scale Translating/utilizing knowledge

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17 Receiving the prestigious Robert Wood Johnson Foundation Community Health Leadership Award

18 Devastation of New Orleans from Hurricane Katrina Creating trust fund Providing ongoing emotional and logistical support Partnering with Beach Center Associate Director Wayne Sailor in re-establishing New Orleans school system with key roles for the Markeys

19 HIGHLIGHTS Federal funding and grant writing Advocated for funding priority for Community Parent Resource Centers -- $100,000 per year for three years. Impossible for Grassroots programs to compete successfully. Beach Center provided extensive technical assistance in grant writing. Grassroots programs provided extensive technical assistance in serving diverse families.

20 Transformative for everyone Over the last 12 years, 9 Grassroots programs have received $2 million of funding through the direct efforts of the Beach Center. During this same time, Beach Center staff have gained knowledge and insight in serving diverse families that exceeds our greatest expectations. Beach Center and Grassroots have become entrusted partners in the truest sense of the concept.

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22 Go to the Beach Center website home page ( Click topic of “Participatory Action Research” in lower left corner. On next page use pull-down menu to link to “Research”. Find 7 articles/chapters about PAR in full-text and Highlight format. For articles about the Beach Center-Grassroots partnership and other writing on participatory action research: