W. David Robinson, PhD; Richard Bischoff, PhD; Paul Springer, PhD; Dan Felix, MS

1. Session # G4A October 29, 201110:30 AM Teams Leading Communities to Improve Rural Mental Health through Community-Based Participatory Research W. David Robinson, PhD; Richard Bischoff, PhD; Paul Springer, PhD; Dan Felix, MS Collaborative Family Healthcare Association 13th Annual Conference October 27-29, 2011 Philadelphia, Pennsylvania U.S.A.

2. Faculty Disclosure We have not had any relevant financial relationships during the past 12 months.

3. Need/Practice Gap & Supporting Resources • Rural residents often must overcome multiple complex barriers to receive appropriate treatment for mental health problems. These barriers include: • stigma • shortage of health care providers • reluctance to acknowledge problems when they exist • lack of family and community support • inadequate health insurance coverage • lack of privacy, • financial constraints and many others (Merwin, Snyder, & Katz, 2006) • In fact, the U.S. Department of Health and Human Services reported that over two thirds of the designated mental healthcare professional shortage areas (59 million people) are located in rural regions (2009).

4. Objectives • Our Goal Today is to: • Enable you to conduct CBPR research in your communities. • Provide an introduction to CBPR, including an operational definition, and the advantages to conducting this type of research. • Describe our project, from its genesis to its current status. • Guide you through the process of designing your own CBPR study.

5. Expected Outcome Participants will have an introduction to the CBPR research process and will leave the workshop with a draft of a CBPR project that they can conduct.

6. What is Community-Based Participatory Research (CBPR)? • CBPR is defined as a collaborative process of research involving researchers and community representatives. In the process and products of research, it: • Engages community members. • Employs local knowledge in the understanding of health problems and the design of interventions. • Invests community members in the processes and products of research and in the dissemination and use of research findings http://www.ahrq.gov/about/cpcr/cbpr/

7. Our CBPR Project • The goal of the current project was to: • help rural Nebraskans identify solutions to overcome barriers and improve mental health care in their communities. • harness the strengths and resources specific to each participating rural community.

8. Why did we carry out this project? • Nebraska’s 22 mental health centers are located in only 7 of the state’s 93 counties. • In Nebraska, 1 in 6 residents suffers from a mental health disorder. • Access to mental health care is a major problem with 89 of 93 counties designated as mental health shortage areas.

9. Why did we carry out this project? • We wanted to identify solutions and establish a plan to help communities achieve and sustain improved mental health treatment. • We believe that by working together with residents of a given community, we stand the best chance of improving the mental health outcomes in that community. • $$$$

10. Recruitment Criteria? • Communities with a population under 5,000 • A minimum of 50 miles from an urban area • Three rural communities in Nebraska were selected

11. How did We Establish CBPR Groups • Community liaisons were identified • Facilitated the recruitment of 10-15 key stakeholders who became members of the CBPR teams. • Included state legislators, mayors and other civic leaders, medical and mental health professionals, clergy, educators, patients/families and the academic researchers.

12. CBPR Outline • We developed a five visit, CBPR model. • Meetings occurred at one to three month intervals, over the course of a year. • Specific tasks and assignments were given during these meetings, and were reported in the next meeting. • Committees began to meet independently between CBPR visits to accomplish their goals.

13. CBPR Process Evolution • First meeting tasks • Develop team • Introduce CBPR process • Identify goals • Team name • Second meeting tasks • Within 6 weeks of the first meeting • Formulate goal-oriented work groups • Schedule meeting without academic members present

14. CBPR Process • Third meeting tasks • Review successes • Follow up from community-members-only group • Discuss leadership structure, make changes • Assign new tasks for work groups 4 & 5. Fourth and fifth meetings tasks • Support progress, evaluate successes • Meetings conducted with academic team observing • Leadership structure changes made for future • Preparation for academic team withdrawal

15. CBPR Process • Each of the CBPR group meetings were audio and videotaped. • The academic team members analyzed the transcripts of the tapes and drafted a synopsis of the findings. • The synopsis was sent to the entire team for review and feedback prior to the next meeting.

16. Sustainability…. • During the final CBPR team meeting, the focus was on devising a plan to continue the community’s progress in improving mental health care and maintain sustainability of the group as a whole.

17. What were the results? Some ideas that came from brainstorming sessions: • Training and education • Funding for resources • Support groups • Teleconferences • Positive activities for youth • Additional therapists • Social services • Identify existing resources • Online info/resources • Online screening tools • Low cost / volunteer clinic • Psychiatry satellite clinic • Financial assistance • Medication assistance • Hospital education center • Traveling clinic to schools • State / region involvement • Grant writing services • Mental Health 1stAid Course • Rural Hotline vouchers

18. Major Results • Community Education: All of the groups identified community education as vital. They formed education committees that: • Published articles in newspapers, newsletters etc. to help community members better understand mental health care issues • Arranged for expert speakers to talk with various community organizations • Participated in community health fairs to educate community members on mental health issues

19. Major results • Resource guides: Communities Identified a need for a resource guide that health care providers, patients and others could use. • Support Groups: Communities developed support groups for patients and family members. • Family to Family Program- 12 week education program for families via telehealth through NAMI was established.

20. Additionally Groups formed Committees For… • Funding: Searched for funding through grants, stipends, region and government entities. • Online Resources: Worked with area high school students to create and maintain websites with mental health care resources • Crisis stabilization unit: Grand Island / Mid-plains

21. What were the results? • Interdisciplinary Collaboration: Facilitated collaboration with physicians, mental health care specialists, clergy, etc. • Needs Survey: CBPR groups administered “needs surveys” to providers and other groups, to understand the needs of the community.

22. Unexpected Results…Inner group Collaboration • The three community teams decided to meet together to share ideas and resources • They identified common goals: • Collaboration between sites to further share resources. • Centralized office / contact person for the group. • Ongoing participation from communities • Survey to identify further resources, needs • Ongoing cooperation with UNMC

23. Participant Reflections on CBPR Process • It instilled Hope in community residents • “It is hopeful for me definitely just because it is nice to see so many people. Sometimes when I am dealing with clients all day long, I think I am the only one that is getting it (laughter) because I see it all the time. It is nice to know that there are people out there that are supportive….” • They enjoyed the diversity of group members • “It was educational to hear from all of the different members that were brought in, whether it was the parents of dealing with children that had mental health illnesses or people themselves that have dealt with it.”

24. Participant Reflections on CBPR Process • It helped develop of useful resources • “I just see ten resources on this committee that I don’t think I’d have any qualms calling anybody on here to ask at any point, ‘Do you know how I could deal with this particular situation?’ ” • Benefit from developing small, achievable goals • “For a while I thought, where do we go? It just seems like it’s such a huge undertaking. How do we make a difference in St. Paul? How do we make a difference in Howard County? …but the more I would come to the meetings, it’s like okay, it’s not this huge undertaking. When you’ve got all these people working and you break it down into little pieces it just seems more doable”

25. Participant Reflections on CBPR Process • Stigma diminished from outsider involvement • “With the sense of stigma and that feeling of not being able to overcome that mountain, it was good to have outside support or input or even the initiating it from an outside context because then it gave us license to show up and be safe with that instead of looking around the room and saying to ourselves, she might be really good to come to a meeting like that, but I don’t dare ask, because we are too intermeshed in some ways.”

26. Real Impact • Through the CBPR Process, we were able to: • pinpoint workable solutions to deal with the unmet mental and emotional health challenges faced by rural residents, and • assist the teams in the transition to working independently of the academic researchers. • More than a year and a half after the academic team's involvement in the project ended, all three CBPR teams are still operational.

27. Challenges to initiating a CBPR project • Distrust of academic institutions • Understanding communities’ social, economic, & political landscape • Time involved meeting and recruiting key partners • Community dynamics • Overextended community stakeholders

28. Challenges to initiating a CBPR project • Unequal power dynamics • Unequal distribution of grant money • Scientific rigor vs. community acceptability • Staff turnover in community organizations http://depts.washington.edu/ccph/pdf_files/darius%20slides%202.pdf

29. Facilitators to initiating a CBPR project • Entrée through existing CBPR projects • Community meetings/forums • Monetary incentives for participation during planning • Develop agreed upon norms and procedures • Develop plans to evaluate partnership process • Creation of Community Advisory Board http://depts.washington.edu/ccph/pdf_files/darius%20slides%202.pdf

30. Key Considerations During CBPR Data Collection • How are instruments decided upon and developed? • Valid, reliable instruments vs. tailoring to local context? • Do “researcher” concepts/constructs need to be reworded/rephrased? • Processes for creating instruments? http://depts.washington.edu/ccph/pdf_files/darius%20slides%202.pdf

31. Key Considerations During CBPR • Who collects the data? • Is it possible to hire and train community residents? • Does using community residents slow down the study? http://depts.washington.edu/ccph/pdf_files/darius%20slides%202.pdf

32. Key Considerations During CBPR • Institutional Barriers • IRB requirements (e.g., consent forms, research compliance training) • Will funding source allow instruments to be modified and/or community residents to be hired? • Are opportunities to publish diminished by modifying instruments? http://depts.washington.edu/ccph/pdf_files/darius%20slides%202.pdf

33. Exercise • What are the strengths, skills, competencies, and insights that community stakeholders could bring to your research project? • What are the strengths, skills, competencies, and insights that you bring to your research project? http://depts.washington.edu/ccph/pdf_files/darius%20slides%202.pdf

34. References • Community-Based Participatory Research Conference Summary http://www.ahrq.gov/about/cpcr/cbpr/ • Israel, BA, Schulz, AJ, Parker, EA & Becker, AB (1998). REVIEW OF COMMUNITY-BASED RESEARCH: Assessing Partnership Approaches to Improve Public Health. Annu. Rev. Public Health. 1998. 19:173–202. • Community campus partnerships for health http://depts.washington.edu/ccph/commbas.html#Conf