Disseminating research in rural Yup'ik communities: Challenges and ethical considerations in moving from discovery to intervention development

International Journal of Circumpolar Health

Volumn 72, Issue SUPPL.1, 2013, Pages

  Rivkin, Inna ^a   Trimble, Joseph ^b   Lopez, Ellen D S ^a   Johnson, Samuel ^a   Orr, Eliza ^a   Allen, James ^a,c  

^a UNIVERSITY OF ALASKA FAIRBANKS   (United States)

^b WESTERN WASHINGTON UNIVERSITY   (United States)

^c UNIVERSITY OF MINNESOTA MEDICAL SCHOOL   (United States)

Author keywords

Alaska Native; Community based participatory research (CBPR); Coping; Reporting research results; Research ethics; Stress

Indexed keywords

ADAPTIVE BEHAVIOR; ALASKA NATIVE; AMERICAN INDIAN; ARTICLE; COMMUNITY-BASED PARTICIPATORY RESEARCH (CBPR); COPING BEHAVIOR; CULTURAL ANTHROPOLOGY; ETHICS; ETHNOLOGY; HUMAN; INFORMATION DISSEMINATION; MENTAL STRESS; METHODOLOGY; PARTICIPATORY RESEARCH; PSYCHOLOGICAL ASPECT; REPORTING RESEARCH RESULTS; RESEARCH ETHICS; RURAL POPULATION; STRESS; TRANSLATING (LANGUAGE); UNITED STATES;

ALASKA NATIVE; COMMUNITY-BASED PARTICIPATORY RESEARCH (CBPR); COPING; REPORTING RESEARCH RESULTS; RESEARCH ETHICS; STRESS;

ADAPTATION, PSYCHOLOGICAL; ALASKA; COMMUNITY-BASED PARTICIPATORY RESEARCH; CULTURE; ETHICS, RESEARCH; HUMANS; INDIANS, NORTH AMERICAN; INFORMATION DISSEMINATION; RURAL POPULATION; STRESS, PSYCHOLOGICAL; TRANSLATING;

EID: 84881268795     PISSN: 12399736     EISSN: 22423982     Source Type: Journal    
DOI: 10.3402/ijch.v72i0.20958     Document Type: Article

References (28)

1. Lardon C, Drew EM, Kernak D, Lupie H, Soule S. Health promotion in rural Alaska: building partnerships across distance and cultures. Partnership Perspect. 2007;6: 125-32.
2. Wexler L. Inupiat youth suicide and culture loss: changing community conversations for prevention. Soc Sci Med. 2006;63:2938-48.
3. Wolsko C, Lardon C, Hopkins S, Ruppert E. Conceptions of wellness among the Yup'ik of the Yukon-Kuskokwim Delta: the vitality of social and natural connection. Ethn Health. 2006;11:345-63.
4. Fienup-Riordan A. Wise words of the Yup'ik people: we talk to you because we love you. Lincoln, NE: University of Nebraska Press; 2005. xlvii, 347 p.
5. Kawagley AO. AYupiaq worldview: a pathway to ecology and spirit. Prospect Height, IL: Waveland Press; 2006.
6. Wolsko C, Lardon C, Mohatt GV, Orr E. Stress, coping, and well-being among the Yup'ik of the Yukon-Kuskokwim Delta: the role of enculturation and acculturation. Int J Circumpolar Health. 2007;66:51-61.
7. Fienup-Riordan A, Rearden A, Meade M. Yup'ik words of wisdom-Yupiit qanruyutait. Lincoln, NE: University of Nebraska Press; 2005 xxxvi, 282 p.
8. Dankwa-Mullan I, Rhee KB, Stoff DM, Pohlhaus JR, Sy FS, Stinson N, Jr., et al. Moving toward paradigm-shifting research in health disparities through translational, transformational, and transdisciplinary approaches. Am J Public Health. 2010;100(Suppl 1):S19-24.
9. Woolf SH. The meaning of translational research and why it matters. JAMA. 2008;299:211-3.
10. Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Publ Health. 1998;19: 173-202.
11. Lopez EDS, Parker E, Edgren K, Brakefield-Caldwell W. Disseminating research findings back to partnering communities: lessons learned from a community-based participatory research approach. Metrop Univ J. 2005;16:57-76.
12. Legaspi A, Orr E. Disseminating research on community health and well-being: a collaboration between Alaska native villages and the academe. Am Indian Alaska Nat. 2007;14: 24-43.
13. Boyer BB, Mohatt GV, Pasker RL, Drew EM, McGlone KK. Sharing results from complex disease genetics studies: a community based participatory research approach. Int J Circumpolar Health. 2007;66:19-30.
14. Alaska Native Knowledge Network. Alaska Federation of Natives Guidelines for Research. [cited 2012 Sep 30]. Available from: http://ankn.uaf.edu/IKS/afnguide.html
15. NSF Office of Polar Programs. Principles for the conduct of research in the Arctic. [cited 2012 Oct 28]. Available from: http://www.nsf.gov/od/opp/arctic/conduct.jsp
16. Mohatt GV, Plaetke R, Klejka J, Luick B, Lardon C, Bersamin A, et al. The Center for Alaska Native Health Research study: a community-based participatory research study of obesity and chronic disease-related protective and risk factors. Int J Circumpolar Health. 2007;66:54-64.
17. Norton IM, Manson SM. Research in American Indian and Alaska Native communities: navigating the cultural universe of values and process. J Consult Clin Psychol. 1996;64:856-60.
18. Rivkin ID, Lopez EDS, Quaintaince TM, Trimble J, Hopkins S, Fleming C, et al. Value of community partnership for understanding stress and coping in rural Yup'ik communities: the CANHR study. J Health Disparities Res Pract. 2011;4: 1-17.
19. Alaska Native Knowledge Network. Alaska Native values for curriculum. [cited 2012 Sep 30]. Available from: http://ankn. uaf.edu/ANCR/Values/index.html
20. Trickett EJ. From 'water boiling in a Peruvian town' to 'letting them die': culture, community intervention, and the metabolic balance between patience and zeal. Am J Comm Psychol. 2011;47:58-68.
21. Trickett EJ, Beehler S, Deutsch C, Green LW, Hawe P, McLeroy K, et al. Advancing the science of community-level interventions. Am J Public Health. 2011;101:1410-9.
22. Lopez ED, Sharma DK, Mekiana D, Ctibor A. Forging a new legacy of trust in research with Alaska Native college students using CBPR. Int J Circumpolar Health. 2012;71.
23. Ford T, Rasmus S, Allen J. Being useful: achieving indigenous youth involvement in a community-based participatory research project in Alaska. Int J Circumpolar Health. 2012;71: 1-7.
24. Mohatt GV, Thomas LR. People awakening team. "I wonder, why would you do it that way?" Ethical dilemmas in doing participatory research with Alaska Native communities. In: Trimble JE, Fisher CB, editors. Handbook of ethical research with ethnocultural populations and communities. Thousand Oaks, CA: Sage; 2005. p. 93-115.
25. Mohatt GV, Hazel KL, Allen J, Stachelrodt M, Hensel C, Fath R. Unheard Alaska: culturally anchored participatory action research on sobriety with Alaska Natives. Am J Community Psychol. 2004;33:263-73.
26. Trimble JE, Scharron-Del-Rio MR, Hill JS. Ethical considerations in the application of cultural adaptation models with ethnocultural populations. In: Bernal G, Domenech Rodriguez MM, editors. Cultural adaptations: tools for evidence-based practice with diverse populations. Washington, DC: American Psychological Association; 2012. p. 45-67.
27. Griner D, Smith T. Culturally adapted mental health interventions: a meta-analytic review. Psychother Theor Res Pract Train. 2006;43:531-48.
28. Bernal G. Intervention development and cultural adaptation research with diverse families. Fam Process. 2006;45: 143-51.