Strengthening Research that Benefits Native Youth Deana Around Him, DrPH, ScM Collaborative Research Center for American Indian Health (CRCAIH) Fellow Policy Research Center National Congress of American Indians 73 rd Annual NCAI Convention & Marketplace Putting First Kids 1 st : Creating Wise Practices in Native Youth Policy Breakout Session October 12, 2016 www.ncai.org/prc www.ncai.org www.crcaih.org
Agenda 1. Context 2. Tips for Researchers and Tribal Leaders Centering Youth Voices Engaging Tribal Communities The Power of Place-Based, Small-Scale Inquiry Expanding to Urban and National Settings Ethical Considerations 3. Key Take Aways & Additional Resources 1
1. CONTEXT 2
Ideas Youth (prenatal to 24 yrs) Tribal Popula,ons Publica+on Research Lifecycle 1 Research process Partners Proposal wri+ng 42% of total US AI/AN popula+on 50% of some state AI/AN popula+ons Create Re-use Data Lifecycle 1,2 Process & analyze Give Access Preserve 1 Adapted from: https://www.jisc.ac.uk/guides/implementing-a-virtual-research-environment-vre 2 Adapted from: http://www.bu.edu/datamanagement/background/whatisdata/ 3
NCAI PRC NCAI Policy Research Center (PRC), est. 2003 Ensure research protects and benefits Na+ve sovereignty Foster regional support for research Share tribal success to build capacity and advance policy Synthesize and disseminate new data Partner to improve data quality www.ncai.org/prc 4
Supporting Research Ethics & Partnership Research Regula<on Curriculum - Research that Benefits Na+ve People: A Guide for Tribal Leaders 1. Founda+ons of Research: An Indigenous Perspec+ve 2. Managing the Design and Planning of Research 3. Ethics as a Guide for Managing Research 4. Conduc+ng Research with Others 5. Understanding Evalua+on Walk SoZly & Listen Carefully: Building Research Rela+onships with Tribal Communi+es Research Partnerships Strengthening Tribal-Academic Research Partnerships Tracking Federal Research Priori<es Comments in response to the NPRM to revise the Common Rule 5
Supporting Our Youth Na+ve Children s Policy Agenda: Pu]ng First Kids 1st Strength in Numbers: Using Data to Advance a Deeper Understanding of Na+ve Youth and Families 6
Bridging Our Ethics & Youth Work Affirming Na<ve Youth: Making Visible, Making Valuable Project Aims Create space for Native youth leaders to convene, set an agenda, learn, and network. Expand partnerships to ensure the collection and reporting of data on the status and experiences of Native youth; and Train Native youth and others involved with developing policies and practices that affect them to do so in a coordinated and effective manner. 7
2. TIPS FOR RESEARCHERS AND TRIBAL LEADERS 8
Resource Goals Serve as a partnership tool for those stewarding research in Native youth contexts. Draw on insights from scholars who have a demonstrated commitment to Native youth, including: Greg Tafoya, MPH Catherine Burnette, PhD, LMSW Tarajean Yazzie-Mintz, EdD Michelle Sarche, PhD Deana Around Him, DrPH, ScM Provide a starting point for community discussions about strengthening Native youth research. 9
Centering Voices Youth are treasured and part of relationship-driven, inter-connected networks. Contextual factors to acknowledge: 1. AI/AN youth bring values from their cultures and age-specific groups 2. Place or status of youth in their community(ies) 3. Definition of AI/AN that has relevance to youth, tribe, and/or community 4. Role of tribal governance, sovereignty, and politics in research 5. Variability in community research capacities and resource availability 6. Investments in youth by local, state, and national organizations 7. Researcher knowledge and relationships with AI/AN youth in a particular place 10
Engaging Tribal Communities Considerations: Social distance between researchers and communities Context of historical oppression Relationship-building and power-balancing Aims: Create mutual respect and trust Find harmony among multiple world-views Foster deep commitment and responsibility Honor the sacred aspects of research Acknowledge community variation in infrastructure, norms, methods/approaches, and recruitment strategies. 11
The Power of Place-based, Small-scale Inquiry Inquiry-driven, context-specific, small-scale efforts make contributions to immediate local change Starting Place Questions can lead to Shared Place Questions Youth ECE Centers Na+ve youth collec+ve Researcher Universal knowledge Parents Small scale inquiries: Rooted in the par+cular Purpose & themed intersec+ons Inten+onal larger contribu+ons 12
Expanding to Urban & National Settings Community-based and -grounded approaches should be extended to expand knowledge of AI/AN youth in urban, national, and regional settings. Value add: Documentation of common strengths and needs across backgrounds and communities Provide evidence of youth health, education, and justice issues that transcend geographic and tribal boundaries. Powerful program and policy advocacy tool Reference point for Native to Native comparison Complement rather than replace. 13
Ethical Considerations Confidentiality Protection of individual and, if desired, community privacy Consent Role of kinship/extended family care; age of consent preferences Referral Context Identification of service needs outside of study or in limited resource setting Law & Jurisdiction Differences in state/tribal mandatory reporting laws; determination of oversight authority Study Design Reluctance around certain designs in high-need settings Sustainability Assurance when resources and human capital are limited; obligation? 14
3. KEY TAKE AWAYS & ADDITIONAL RESOURCES 15
Take Aways No one-size-fits-all approach to research with Native youth Wise practices include: Centering youth voices Fostering relationships with youth and communities Celebrating diversity of each context Building mechanisms to understand shared strengths and needs across contexts Committing to ethical approaches that account for needs of Native youth and communities Researchers and communities have a role in strengthening research that benefits Native youth. 16
Additional Resources Castellano, M. B. (2004). Ethics of Aboriginal research. Journal of Aboriginal Health, 1(1), 98-114. http://www.nvit.ca/docs/ethics%20of%20aboriginal%20research.pdf. Child Welfare Research & Evaluation Tribal Workgroup. (2013). A roadmap for collaborative and effective evaluation in tribal communities. Washington, DC: Children s Bureau, Administration for Children and Families, US Department of Health and Human Services. https://www.acf.hhs.gov/sites/default/files/cb/tribal_roadmap.pdf. Deer, F. (2006). Research Perspectives in Indigenous Education: The legitimacy of Indigenous knowledge. World Indigenous Nations Higher Education Consortium Journal. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.500.7172&rep=rep1&type=pdf. Grenier, L. (1998). Working with Indigenous knowledge: A guide for researchers. Ottawa, Canada: International Development Research Centre. https://www.idrc.ca/en/book/working-indigenous-knowledge-guide-researchers? PublicationID=293. NCAI Policy Research Center. (2012). Developing a community-based research orientation: Resources for Investigators desiring to work with American Indian & Alaska Native communities. Washington, DC. http://genetics.ncai.org/tips-for-researchers.cfm?pdf=1&. Others? 17
Collaborative Research Center for American Indian Health (CRCAIH) Goal: Address Social Determinants of Health through Transdisciplinary Collabora+on. NIMHD Award #: U54MD008164 (PI Elliof) www.crcaih.org 18
(WA-DO) THANK YOU! Email: daroundhim@ncai.org In addi,on to the the Tips for Researchers contributors, we also gratefully acknowledge grant funding from the Administra,on for Na,ve Americans, which supported crea,on of the resource. 19