Urban American Indian Elders Sharing Stories of Resilience 25th Annual Native Health Research Conference June 2014 ABSTRACT AMERICAN INDIAN STORIES OF RESILIENCE TO FOSTER WELLBEING. (K.M. Reinschmidt, A. Attakai; UA) We documented American Indian (AI) stories of resilience and health with urban AI elders, using community-based participatory principles and qualitative methods. We also hosted community events and engaged AI community members to share stories of resilience and health. Thematic analysis showed that resilience strategies of AI elders and community members include utilizing individual responsibility rooted in community, family and cultural traditions. These protective factors can be operationalized to reduce health disparities. For this pilot, we will create digital stories and develop a 12 session program to promote resilient behaviors and strategies associated with wellbeing among Tucson’s AI community.

Documenting and Promoting Stories of Resilience Among Urban American Indians Elders Pilot project funded by the Center for American Indian Resilience National Institute On Minority Health And Health Disparities of the National Institutes of Health under Award Number P20MD006872 Partnership between University of Arizona and Tucson Indian Center PURPOSE Document life narratives of urban American Indian (AI) elders at the Tucson Indian Center (TIC) Focus on historical trauma and resilience from Elders’ perspectives. Develop digital stories based on the narratives Develop a resilience-based health promotion program/curriculum for youth at TIC consisting of 12 workshops notes

Team Members Agnes Attakai and Kerstin M. Reinschmidt (Co-PI) Carmella Kahn-Thornbrugh (UA) Shannon Whitewater (UA) Tara Chico (UA) Marlene Jose (TIC) Phoebe Mills (TIC) Nolando Neswood (elder) Kathryn Foster (elder) Nicolette Teufel-Shone (PI- CAIR)

CBPR Principles Tucson Indian Center-UA co-designed project Research process with elders Community Advisory Board Co-designed project UA had long relationship with TIC and it’s leadership wanted a project with elders - After all they went through, why are Elders so happy when they are here? Let’s bottle it up and give it to the youth. Or: CBPR principles: Initial consultation with Tucson Indian Center, developing their idea into a research proposal, obtained TIC and UA IRB approval, collaborating with TIC Staff, identified a designated TIC Project Liaison on CAIR CAB and developed a project CAB. Involvement of Elders to review the study materials, providing feedback concerning the research methodology, and providing feedback on questionnaire and curriculum developments. Research process with elders Research with elders as part of CBPR: modified interview questions and curriculum outline. CAB UA CAIR Pilot staff, TIC staff, urban AI elders (55+) Monthly meetings at TIC (April-October 2013) Trainings 2 CAB member were Human Subjects Protection approved Two coding workshops with UA staff, 1 elder, and 1 TIC staff member Topics covered during meetings include Project updates Demonstration of digital stories Introduction/discussion on CBPR Reciprocal relationship building UA staff will assist CAB members with projects (i.e. family history books) Challenges Low attendance Re-conceptualized C Need to re-conceptualize CAB

Goal The purpose this qualitative pilot research project was to document and develop a youth health promotion curriculum on native elders’ stories of resilience. Methods Develop questionnaire based on literature Test with elders and revise Recruit 15 elder for interviews Video tape, audio tape and transcribe Code using NVIVO Develop curriculum Test, revise and finalize Resilience: First is confronting the historical trauma. Second is understanding the trauma. Third is releasing the pain of historical trauma. Fourth is transcending the trauma.” (Brave Heart, M. Y. H., Chase, J., Elkins, J., & Altschul, D. B. 2011) Research indicates that historical trauma becomes even more painful when it seems to be forgotten, trivialized, or denied: conspiracy of silence.” Sharing stories is a traditional native practice that provides a vehicle for learning and healing. Narratives grounded within a strengths-based perspective emphasize how family members are successful in overcoming difficulties and remaining strong in the face of traumatic circumstances or change. Resilience: The concept of resilience in public health research includes individual internal characteristics and external support from family and community. Cultural Resilience: For American Indians and other ethnic groups, the role of culture is a strength. Culture: Shared rules, beliefs, attitudes and practices, which perceptions and shape our interpretation of life events. Culture shapes our thought processes and understanding through distinctive linguistic interpretation (storytelling) , forged by experience (ceremonies/traditions) and environment (rural/urban, traditiona/contemporary), it facilitates our creation of a unique and comprehensive worldview. We have to make sense of and find meaning in our world.

Elder Interviews 11 females, 2 males; age 55+ Structured, open-ended questionnaire with 25 questions - 2 sections: Historical Trauma – Resilience Questions Explored the concepts of “historical trauma” and “resilience” from the Elders’ points of view Solicited stories about their ancestors, their families and their own lives as related to these two concepts - Sample Questions - What do you think of when you hear the words historical trauma? - How have your ancestors’ experiences with historical trauma or [term suggested by elder] impacted your community? - What are some examples of community resiliency that have helped your urban community face the challenges related to historical trauma or [term suggested by elder]? - What strategies did you use to get through hard times in your life? - What are some strategies that can help Native urban youth in Tucson get through hard times? 11 females, 2 males; age 55+ 1-3 hour duration; video/voice recorded Stories edited 2nd interview to review digital story

Analysis Process Combined consensus and thematic analysis Consensus approach to develop thematic codes NVIVO coding Coded texts shared with team for curriculum design Complete analysis and interpretation (CAB) Team consensus of final analysis Combined consensus and thematic analysis Consensus approach to develop thematic codes Included one CAB member (Elder) NVIVO coding 2 coders Inter-rater reliability scores Coders discussed and agreed Coded shared with team for curriculum design Complete analysis and interpretation (CAB) Team consensus of final analysis (in process)  Will run analysis by Elders after March lunch meeting.

Thematic Codes Used in NVIVO THEMES PATTERNS HISTORICAL TRAUMA Native Concepts Oppression, assimilation, fear Sense of Loss Boarding school, broken families, loss of language, loss of tradition, removal from family, removal from land, yearning Adversities Alcoholism/drugs, discrimination, generational gap, ill health, living conditions, loss of family members, lost voice, violence RESILIENCE Survival, life, get through hard times, bounce back, better myself Individual Know roots, participation, practicing spirituality, responsibility, strength, volunteerism Family Family members as role models, growing up, positive family relations, safe environment for kids, teaching kids Community Culture/traditions/language, economic development, TIC, other community resources, sharing stories, sovereignty, spirituality, traditional land use Youth Activities, education, get elders and youth together, know roots/know history Health Health now, health then, health of youth, strategies for health Strategies Non-Native Support and Connection Personal Story

Historical Trauma Events of the past led to Loss of language, traditions and culture Disruption of family life Contemporary adversities as continuation past events Alcoholism/drugs Discrimination Loss of family members Generational gap Untold stories Strategies to overcome historical trauma Building positive identities based on culture and tradition Bringing the generations together HISTORICAL TRAUMA Native concepts: oppression, assimilation, fear Events of the past (1) led to loss of language, traditions and culture, (2) disruption of family life (boarding school, removal from family, broken families) Contemporary adversities seem to be a result/continuation of past events: (1) alcoholism/drugs (most frequently mentioned adversity) (2) discrimination (presented as a continuum from the past) (3) loss of family members (4) generational gap (5) lost voice (not talking about historical trauma, untold stories) To overcome historical trauma, strategies mentioned included the building of a positive identity based on culture and tradition and (mentioned by some) by bringing the generations together

Multiple, Interrelated Levels of Resilience At the community level, sources of resilience are Culture, language, traditions and sharing stories Traditional land use Tucson Indian Center and/or other community resources The family plays important cultural roles by Teaching the younger generation Creating positive family relations Providing family members as role models The individual is a source of resilience as embedded in family, community and culture/traditions by practicing spirituality practicing responsibility being strong participating/volunteering Native Concept: survival, life, getting through hard times, bouncing back, better myself Resilience has multiple, interrelated layers: community, family and individual At the community level, sources of resilience are (1) culture, language and traditions, (2) TIC (and other community resources), (3) traditional land use, and (4) sharing of stories; sovereignty and economic development were mentioned but not frequently The family plays important cultural roles by (1) teaching the younger generation, (2) creating positive family relations (respect, gratitude), (3) providing family members as role models (e.g. grandmothers knowledge/practices) The individual is a source of resilience as embedded in family, community and culture/traditions by (1) practicing spirituality, (2) practicing responsibility, (3) being strong, and (4) participating/volunteering

Resilience Strategies for Youth Education Activities Getting elders and youth together Knowing roots/history Sources of resilience for youth focused on (1) education and (2) activities (traditional or other) and also mentioned (3) getting elders and youth together and (4) knowing roots/history  - I'll have to look more closely into health codes again, but here's what I remember: in general, earlier generations were healthier than current ones; to regain health, youth needs responsibility, activities and spirituality

Resilience curriculum 4 modules with elder stories to promote resilient behaviors and strategies among American Indian youth 12-18. Public health interventions should adopt strength-based approaches with youth and families to break away from challenges. Curriculum Development Completed Developed curriculum outline Focus group with 20 Elders to review outline In process Developing curriculum, including thematic digital stories Conduct 6 focus groups with elders to review the digital stories

Draft Curriculum Goal 1: Build connections between elders and youth by enhancing the knowledge of the role of elders in American Indian communities Goal 2: Enhance youth identity through storytelling Goal 3: Increase knowledge among youth about American Indian resilience Goal 1: Build connections between elders and youth by enhancing the knowledge of the role of elders in American Indian communities Volunteerism Role Model Culture, Tradition, Language and Spirituality Growing Up/History Health Goal 2: Enhance youth identity through storytelling What is storytelling? Telling your personal story How to share stories Goal 3: Increase knowledge among youth about American Indian resilience History of American Indian Resilience Personal stories of resilience Native traditional values and teachings Personal visions

culture, tradition, language growing up/history role models Goal 1: Build connections between elders and youth by enhancing the knowledge of the role of elders in American Indian communities Codes health generation gap spirituality values culture, tradition, language growing up/history role models volunteerism Lesson Plans Voice of Elders Volunteerism Role Models Culture, Tradition, Language and Spirituality Growing-up/History Health

Goal 2: Enhance youth identity through storytelling Codes generation gap Culture, language, tradition Lesson Plans Storytelling What is storytelling? Telling your personal story How to share stories

Goal 3: Increase knowledge among youth about American Indian resilience Lessons Plans Resilience History of American Indian Resilience Personal stories of resilience Native Traditional values and teachings Personal visions Historical Trauma Specific topics: TBD Adversity: discrimination, Codes Resilience Individual resilience Family resilience Role models Positive family relations Community resilience Traditions Economic development Sovereignty Spirituality Historical Trauma Adversity: alcoholism, discrimination, generational gap, ill health, living conditions, loss of family members, lost voice, violence. sense of loss: boarding school, broken families, language, traditions, removal. Native Concepts Health then and now

Sample Lesson: Adversity Facing Adversity To have participants learn about prejudice, discrimination and how American Indians have faced adversity. Show video: Historical Trauma: Discrimination (2:03) Reflect: After viewing video, ask the students what they saw. Activity: Characteristics and Skills Discuss: definitions of prejudice, discrimination and stereotypes. Action: Write in journal how they will use their new knowledge.

NEXT STEPS Completing Project Pilot, evaluate and revise curriculum Present final curriculum and digital stories to Tucson Indian Center

Acknowledgements Sponsor: National Institute On Minority Health And Health Disparities of the National Institutes of Health under Award Number P20MD006872. Tucson Indian Center: Jacob Bernal, Marlene Jose, Phoebe Mills-Cager, CAIR Community Advisory Board members. Contact Information: Agnes Attakai, MPA, Co-PI, agnesa@email.arizona.edu Kerstin M. Reinschmidt, PhD, MPH, Co-PI kerstin@email.arizona.edu

Thank you 