Literature DB >> 15448287

Access, relevance, and control in the research process: lessons from Indian country.

Spero M Manson1, Eva Garroutte, R Turner Goins, Patricia Nez Henderson.   

Abstract

OBJECTIVE: To illustrate successful strategies in working with American Indian (AI) and Alaska Native (AN) communities in aging and health research by emphasizing access, local relevance, and decision-making processes.
METHODS: Case examples of health studies involving older AIs (greater than or equal to 50 years) among Eastern Band Cherokee Indians, a federally recognized reservation; the Cherokee Nation, a rural, nonreservation, tribal jurisdictional service area; and Lakota tribal members living in Rapid City, South Dakota.
RESULTS: Local review and decision making reflect the unique legal and historical factors underpinning AI sovereignty. Although specific approval procedures vary, there are common expectations across these communities that can be anticipated in conceptualizing, designing, and implementing health research among native elders.
CONCLUSIONS: Most investigators are unprepared to address the demands of health research in AI communities. Community-based participatory research in this setting conflicts with investigators' desire for academic freedom and scientific independence. Successful collaboration promises to enhance research efficiencies and move findings more quickly to clinical practice.

Mesh:

Year:  2004        PMID: 15448287      PMCID: PMC5338590          DOI: 10.1177/0898264304268149

Source DB:  PubMed          Journal:  J Aging Health        ISSN: 0898-2643


  11 in total

Review 1.  Participatory research maximises community and lay involvement. North American Primary Care Research Group.

Authors:  A C Macaulay; L E Commanda; W L Freeman; N Gibson; M L McCabe; C M Robbins; P L Twohig
Journal:  BMJ       Date:  1999-09-18

2.  The ethics of research in American Indian communities.

Authors:  Murray L Wax
Journal:  Am Indian Q       Date:  1991

3.  Research ethics for mental health science involving ethnic minority children and youths.

Authors:  Celia B Fisher; Kimberly Hoagwood; Cheryl Boyce; Troy Duster; Deborah A Frank; Thomas Grisso; Robert J Levine; Ruth Macklin; Margaret Beale Spencer; Ruby Takanishi; Joseph E Trimble; Luis H Zayas
Journal:  Am Psychol       Date:  2002-12

4.  Awareness and use of home- and community-based long-term care by rural American Indian and white elderly with co-morbid diabetes.

Authors:  R Turner Goins; Amber Tincher; S Melinda Spencer
Journal:  Home Health Care Serv Q       Date:  2003

5.  Prevalence of selected risk factors for chronic disease and injury among American Indians and Alaska Natives--United States, 1995-1998.

Authors: 
Journal:  MMWR Morb Mortal Wkly Rep       Date:  2000-02-04       Impact factor: 17.586

Review 6.  Review of community-based research: assessing partnership approaches to improve public health.

Authors:  B A Israel; A J Schulz; E A Parker; A B Becker
Journal:  Annu Rev Public Health       Date:  1998       Impact factor: 21.981

7.  The Navajo Health and Nutrition Survey: research that can make a difference.

Authors:  T Byers; J Hubbard
Journal:  J Nutr       Date:  1997-10       Impact factor: 4.798

8.  The development, validity, and reliability of the OARS multidimensional functional assessment questionnaire.

Authors:  G G Fillenbaum; M A Smyer
Journal:  J Gerontol       Date:  1981-07

9.  Research in American Indian and Alaska Native communities: navigating the cultural universe of values and process.

Authors:  I M Norton; S M Manson
Journal:  J Consult Clin Psychol       Date:  1996-10

10.  Cancer risk factors in three Sioux tribes. Use of the Indian-specific health risk appraisal for data collection and analysis.

Authors:  T K Welty; N Zephier; K Schweigman; B Blake; G Leonardson
Journal:  Alaska Med       Date:  1993 Oct-Dec
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  42 in total

1.  "Oh No, We are Just Getting to Know You": The Relationship in Research with Children and Youth in Indigenous Communities.

Authors:  James Allen; Gerald V Mohatt; Carol A Markstrom; Lisa Byers; Douglas K Novins
Journal:  Child Dev Perspect       Date:  2012-03-01

2.  Predictors of performance on the MMSE and the DRS-2 among American Indian elders.

Authors:  Lori L Jervis; Alexandra Fickenscher; Janette Beals; C Munro Cullum; Douglas K Novins; Spero M Manson; David B Arciniegas
Journal:  J Neuropsychiatry Clin Neurosci       Date:  2010       Impact factor: 2.198

Review 3.  Research as spiritual covenant.

Authors:  Emily Matt Salois; Patricia A Holkup; Toni Tripp-Reimer; Clarann Weinert
Journal:  West J Nurs Res       Date:  2006-08       Impact factor: 1.967

4.  Research with groups: group rights, group consent, and collaborative research commentary on "Protecting the Navajo People through tribal regulation of research".

Authors:  Brian Schrag
Journal:  Sci Eng Ethics       Date:  2006-07       Impact factor: 3.525

5.  Pandemic influenza preparedness and vulnerable populations in tribal communities.

Authors:  Amy V Groom; Cheyenne Jim; Mic Laroque; Cheryl Mason; Joe McLaughlin; Lisa Neel; Terry Powell; Thomas Weiser; Ralph T Bryan
Journal:  Am J Public Health       Date:  2009-05-21       Impact factor: 9.308

6.  Creating research capacity through a tribally based institutional review board.

Authors:  Deborah J Morton; Joely Proudfit; Daniel Calac; Martina Portillo; Geneva Lofton-Fitzsimmons; Theda Molina; Raymond Flores; Barbara Lawson-Risso; Romelle Majel-McCauley
Journal:  Am J Public Health       Date:  2013-10-17       Impact factor: 9.308

7.  Building and maintaining trust in a community-based participatory research partnership.

Authors:  Suzanne Christopher; Vanessa Watts; Alma Knows His Gun McCormick; Sara Young
Journal:  Am J Public Health       Date:  2008-06-12       Impact factor: 9.308

8.  Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity.

Authors:  Nina Wallerstein; Bonnie Duran
Journal:  Am J Public Health       Date:  2010-02-10       Impact factor: 9.308

9.  Cognition, Depressive Symptoms and Vascular Factors among Southwest Tribal Elders.

Authors:  Francine Gachupin; Michael D Romero; Willa J Ortega; Rita Jojola; Hugh Hendrie; Eddie Paul Sr Torres; Frank Lujan; Michael Lente; Barbara Sanchez; Verna Teller; Fernando Beita; Ulysses Abeita; Beatrice Lente; Deborah Ruth Gustafson
Journal:  Ethn Dis       Date:  2016-04-21       Impact factor: 1.847

10.  Embodied meanings of early childbearing among American Indian women: a turning point.

Authors:  Janelle Palacios; Catherine Chesla; Holly Kennedy; June Strickland
Journal:  J Midwifery Womens Health       Date:  2012-08-21       Impact factor: 2.388

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