Aging Research, Education, and Practice at GSA's Annual Scientific Meeting

2. Gain a 360 degree view of aging research, education, and practice only at GSA’s Annual Scientific Meeting. Save the Date November 18-22, 2015 Orlando, Florida Walt Disney World Swan and Dolphin Learn more at geron.org/2015

3. “Global Aging and Health: Bridging Science, Policy, and Practice” Visit iagg2017.org and sign up to receive future IAGG 2017 news. “Global Aging and Health: Bridging Science, Policy, and Practice” Visit iagg2017.org and sign up to receive future IAGG 2017 news.

4. Effective research methods with Alaska Native Elders: Lessons learned, challenges, and benefits November 20, 2015 Jordan P. Lewis, PhD, MSW, CPG Indigenous Wellness Research Institute University of Washington School of Social Work Seattle, WA

5. Personal background • Aleut (Alaska Native) • Commercial fishing background • Pivotal role of family and Elders: • great grandparents, late Paul & Anna Chukan • Grandparents, late Gordon & Anisha McCormick • Elders in village of Naknek

6. Native Americans are living longer • Elders are living longer and healthier lives AND tend to have more chronic illnesses (CDC, 2014). • Elders live in extended family environments • Elders are held in high regard by family and community • Elders are honored and cared for by family and community

7. Elder’s history • Orphanage • Boarding School - BIA • Kill the Indian, save the white man • Forbidden to speak Native language, cut hair, disconnect from family, physical abuse • Raised by extended family or foster parents • Family illnesses, death, relocation • TB Sanitarium • Source: National Resource Center on Native American, Alaska Native, & Native Hawaiin Elders, UAA, Anchorage, Ak.

8. Beliefs that affect conversation with Elders • Spirituality • Food • Community • Music • Preparations of goods, foods, services

9. Communication strategies Make eye contact Handshakes Information by word of mouth Pay attention to nonverbal/indirect communication English is second language, speaking too fast Listen and watch for indirect requests Withdrawal or silence – sign of disapproval Humor

10. Successful aging through the eyes of Alaska Native Elders: What it means to be an Elder in Bristol Bay, AK

11. DissertationStudy • This study was based on qualitative, in-depth, interviews with Alaska Native (AN) Elders on what it means to age well in Bristol Bay. • An adapted Explanatory Model (EM) approach (Kleinman, 1980) was used to understand successful aging from the perspective of AN Elders. Rather than focusing on pathology, this study focused on the health of AN Elders in this SW region of Alaska.

12. Approval process • Approvals were sought and obtained prior to the initial start of the project. • Once project was discussed with University and community researchers, each participating community was visited to introduce project team, solicit input, and receive approvals.

13. Approval process, cont’d • After data collected, authors sought input and approvals from community on: • Data interpretation • Data dissemination • Dissemination products – format • Results were returned to communities - Community presentations • Final report presented to tribal councils • Next steps determined • Maintain communication beyond life of project

14. Challenges • Challenges of engaging in CBPR with Alaska Native communities and elders, lessons learned

15. Challenge #1 • Multiple perspectives to take into consideration • The community • Researcher • Funder • Governing IRB • Home University

16. Challenge #2 • Academic vs. CBPR • Universities and professional organizations (i.e., APA) have their requirements and expectations o researchers. • Universities have been slow to recognize the additional work involved in the CBPR approach to research. • Fail to take slower publication rates, time and effort taken away from teaching requirements, environmental logistics.

17. Challenge #3 • Tribal communities have different viewpoints on how to conduct research. • Communities view you as experts with answers and want a top-down approach • We approach study from a collaborative viewpoint, engaging community in design, implementation, and reporting of findings.

18. Challenge #4 • Translation • Alaska is home to 11 cultural groups and 229 federally recognized communities. • Each is linguistically, culturally, and geographically distinct and unique. • English language proficiency is limited among elders. • English is the second language for a majority of Native elders. • Language used in rural Alaska is less academic and more functional

19. Challenge #5 • Disagreement • When working with more than one community, not every community may agree. • When one community does not agree, need to determine how to proceed with findings, publications, etc.

20. The Path to Healing • Awareness • Acknowledgement of Fear • Education • Acceptance • Understanding • Compassion • Forgiveness • We need to highlight the strengths and resources existing in tribal communities. • Individuals, families, and communities possess unique strengths and talents to support elders and persons with disabilities.

21. Lessons Learned • Listen to the needs of the community • Researchers must work in a flexible, iterative, fashion. • This work cannot be rushed! • Local culture and knowledge must be respected and integrated into the research. • Establish trusting relationships is crucial. • Research must respect and reinforce sovereignty and self-determination

22. Lessons learned • Take the time and be patient, build relationships, and spend time in the communities. • The community, region, and its members support the project and feel they are representative of their community • Incorporate their culture, knowledge, values, and experiences into the project. • Tribal councils and gatekeepers are key to a successful project • Do not be afraid to make mistakes or say/do the wrong thing. Just learn from it and keep coming back.

23. Most important lesson • Research with tribal communities is about: Building, maintaining, and respecting relationships. • Using a CBPR approach builds trusting and lasting relationships with elders and communities.

24. Recommendations • Ensure tribal communities are supportive and invested in the project. • Ensure they feel they are contributing members of the project in all phases: design, implementation, and dissemination • Develop relationships with the communities. • Keep your promises. • It is your responsibility to ensure the community is respected and protected.

25. Recommendations • Develop and maintain relationships with the tribal councils in each community • Seek their input, ideas, advice, as well as changes throughout the life of the project. “Programs work best if they are both culturally relevant and developed with major community, or local, input” (Middlebrook et al., 2001).* *Middlebrook, D.L., LeMaster, P.L., Beals, J., Novins, D.K., & Manson, S. (2001). Suicide prevention in American Indian and Alaska Native communities: A critical review of programs. Suicide and Life Threatening Behavior, 31(Suppl.), S132-149.

26. Recommendations • Work close with communities and tribal councils until they are comfortable with the project. • Include local knowledge, cultural values, and experiences when designing and implementing a research study. • Work with a local bilingual speaker to develop research documents. • Important to have a broad range of community collaborators • Elders, Native leaders, community members

27. Benefits • CBPR with tribal communities in AK is a very rewarding approach to research • Lasting relationships • We respect and trust each other • Communities reach out to us to conduct new projects • We engage in bi-directional learning!

28. Benefits • CBPR empowers communities and individuals to take an active role in research, as well as teaches them skills to do their own research. • CBPR results in • addressing the community’s priorities. • gives them ownership and voice in the research process.

29. Thank you for your time!