Building Research Capacity With Members of Underserved American Indian/Alaskan Native Communities

Jetter, Karen M.; Yarborough, Mark A; Cassady, Diana L; Styne, Dennis M.

doi:10.1177/1524839914548450

Cited by 12 publications

(10 citation statements)

References 4 publications

(5 reference statements)

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“…Despite the intentions and activities of the SCF Research Department, customer-owners request more information about research actively being conducted, data collection and other progress updates, study results, and whether indicated changes in health care delivery are made in a timely manner (Boyer et al, 2011; Gottlieb, 2013; Hiratsuka, Brown, & Dillard, 2012; Hiratsuka, Brown, Hoeft, & Dillard 2012; Woodahl et al, 2014). These expectations for information exchange across the full lifespan of research projects clearly require active engagement well beyond approval of a scientific manuscript or a final report by a tribal government (Jetter, Yarborough, Cassady, & Styne, 2015; Oetzel et al, 2015). The SCF Research Department has identified the following communication barriers as ongoing challenges in engaging and disseminating research findings to AN/AI people.…”

Section: Southcentral Foundation’s Ongoing Challenges In Research Engmentioning

confidence: 99%

Challenges in Engaging and Disseminating Health Research Results Among Alaska Native and American Indian People in Southcentral Alaska

Dillard¹,

Caindec²,

Dirks³

et al. 2018

AIANMHR

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AMERICAN INDIAN AND ALASKA NATIVE MENTAL HEALTH RESEARCH i FOREWORDWe are delighted to showcase a unique process for reaching out to, engaging, and disseminating research conducted among Alaska Native people. The Southcentral Foundation, notably its Research Department, led by Dr. Denise Dillard and her colleagues -the authors of this special issue − is widely respected for its deep commitment to pursuing research relevant to its customer/owners. Indeed, simply referring to their patient population in this fashion underscores the alignment of their mission, values, and actions. Frankly, I know of no other entity, tribal or otherwise, so fully dedicated in principal as well as practice to ensuring that its research is driven by stakeholders, that the results are translated into terms meaningful to them, that the findings reflect their perspectives, that the attendant insights are applied with local benefit, and that this work is undertaken in a scientifically rigorous manner that contributes to our understanding of the health and well-being of this special population. The articles herein testify to the effort required of such work and the potential return on investment for all participants.Unfortunately, much of today's conversation about outreach to, engagement of, and dissemination among Native communities proceeds at a level of abstraction that offers little guidance about actual process. Not so here. The authors describe in detail the nature of their research, steps taken to communicate findings to key stakeholders, the latter's reactions, and implications for this process. Their candid discussion of the challenges that arose during this endeavor represents a refreshingly authentic analysis of a difficult subject, the mechanics of which are often glossed over in the rush to exhort others to engage tribal communities. Of particular value is the authors' reflection on how the communication strategies available to them through the Southcentral Foundation can be mobilized to maintain the momentum of their initial efforts and to reinforce the reciprocity as well as transparency that characterized this undertaking. The lessons learned, and shared in the pages to follow, are important ones. Thank you for stretching yourselves beyond the typical role of researcher-as-scientist to illustrate these lessons and the wisdom contained therein. Beyond this introduction, the special issue consists of three sections. Section I describes the background information shared with Forum attendees, the structure and content of the Forum itself, and the methods used to gather community feedback. Section II depicts three SCF research studies that disseminated results differently, along with community feedback about clarity of results, sufficiency of information, and the degree to which information was presented in an interesting way. The three research studies concern dissemination of results from a T-SBIRT (i.e., trauma-focused screening, brief intervention, and referral to treatment) process, a stakeholder-driven decision support to...

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Section: Southcentral Foundation’s Ongoing Challenges In Research Engmentioning

confidence: 99%

Challenges in Engaging and Disseminating Health Research Results Among Alaska Native and American Indian People in Southcentral Alaska

Dillard¹,

Caindec²,

Dirks³

et al. 2018

AIANMHR

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“…Not all research needs to conform to the structure of PAR, but PAR does have certain lessons in ethical methodology that, I would argue, can usefully be applied to address the problems discussed here. Appropriately, PAR is a very common methodological approach for many researchers working with indigenous communities (e.g., Davis and Keemer, 2002; Holkup et al, 2004; Jetter et al, 2015; Johnston-Goodstar, 2013). As noted previously, control over their own knowledges and information is a concern of central importance for many indigenous communities, and partnerships to facilitate internal community generation, analysis, and dissemination of information through PAR has been a valuable tool.…”

Section: How Do We Deal With the Holes In The Process?mentioning

confidence: 99%

Oversight: Community vulnerabilities in the blind spot of research ethics

Cragoe

2017

Research Ethics

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In spite of many and varied concerns that the processes of institutional ethical review are flawed, cumbersome, and in need of reform, these processes do provide effective protection in certain situations for individual research subjects, researchers, and the institutions from which the researchers venture to conduct their fieldwork. Many in the social sciences have argued that the ethical protocols that the researcher must observe are designed to protect against the potential dangers of much riskier biomedical research, and that social research is, by and large, harmless. Although there is some validity to that argument, in this paper, social research is assessed not in terms of its risks to the individual participant, but to communities. By examining the protocols of the Belmont Report, the Institutional Review Board, and the American Sociological Association's "Code of Ethics" and ethical review, this paper discusses some of the major blind spots in the ethical review of social science research, applying the analysis in particular to the case of indigenous communities, who have historically sustained significant damage from academic researchers against which no standardized institutional review could have protected them. The paper covers the history and parameters of these three ethical review institutions, identifies shared blind spots, and discusses the consequences of these blind spots for indigenous communities, ending with some suggestions of ways to address the problems in the system.

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“…The widely used online training curricula (The CITI Program, ) lack AI/AN content, relevant case studies, specific issues related to Federal Indian Law and tribal law, and examples to stimulate an understanding in applying the Belmont principles and Common Rule (45 CFR part 46) guidelines to Indigenous communities. Written for an academic audience, the reading level is also inappropriate for many community‐level researchers who would be expected to review and implement research (Jetter, Yarborough, Cassady, & Styne, ; Pearson et al., ).…”

Section: Introductionmentioning

confidence: 99%

Beyond the Belmont Principles: A Community‐Based Approach to Developing an Indigenous Ethics Model and Curriculum for Training Health Researchers Working with American Indian and Alaska Native Communities

Parker

Pearson

Donald

et al. 2019

American J of Comm Psychol

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Building Research Capacity With Members of Underserved American Indian/Alaskan Native Communities

Cited by 12 publications

References 4 publications

Challenges in Engaging and Disseminating Health Research Results Among Alaska Native and American Indian People in Southcentral Alaska

Challenges in Engaging and Disseminating Health Research Results Among Alaska Native and American Indian People in Southcentral Alaska

Oversight: Community vulnerabilities in the blind spot of research ethics

Beyond the Belmont Principles: A Community‐Based Approach to Developing an Indigenous Ethics Model and Curriculum for Training Health Researchers Working with American Indian and Alaska Native Communities

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