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Conducting community-based participatory research (CBPR) is a complex endeavor, particularly when training non-academic community members. Though examples of CBPR training programs and protocols have been published, they often address a limited set of concepts and are tailored for university or medical school students. Here, we describe the process of developing an online CBPR training program for American Indian (United States) and Indigenous (Canada) community members to conduct multi-sited ethnographic dementia research. This program is unique in its breadth and depth, as our program covers CBPR theory, methods, practical research, and administrative skills. Significantly, this program centers Indigenous methodology, pedagogy, and processes such as two-eyed seeing, storywork, and decolonization approaches. Key to this training program is a "second-generation" approach which incorporates experiential knowledge from a prior community-based researcher and academic partners and is designed to develop CBPR capacity among community-based researchers and partnering communities. In this paper, we detail the experience of the first cohort of learners and subsequent improvement of the training materials. Unique challenges related to the specific research focus (dementia), population/setting (American Indian/First Nations communities), and technology (rural digital infrastructure) are also discussed. [ABSTRACT FROM AUTHOR]

Background: There is a long history of research being conducted on Aboriginal and Torres Strait Islander peoples that has offered questionable benefit but occasioned great distress and distrust. Using research methods that are suitable and acceptable to Aboriginal and Torres Strait Islander peoples is a critically important step towards restoring trust and improving the accessibility and relevancy of research that better addresses the needs of Aboriginal and Torres Strait Islander peoples. The current research aims to qualitatively evaluate Aboriginal and Torres Strait Islander peoples' perceptions of the suitability and acceptability of engaging in a think-aloud interview embedded in an individual yarn; a think-aloud yarn. Methods: We employed the think-aloud method as part of the larger What Matters 2Adults study. Aboriginal and Torres Strait Islander participants were engaged in a think-aloud yarn, then immediately following, a follow-up yarn to explore the acceptability of the think-aloud method. The follow-up yarns were audio recorded, transcribed verbatim, and analysed utilising reflexive thematic analysis with an Indigenous epistemological lens. Results: A total of 17 Aboriginal and Torres Strait Islander adults participated in our study. Participants reported that taking part in the think-aloud yarn was acceptable, not difficult and was less onerous than writing down their thoughts. Engaging participants in a social yarn before the think-aloud research yarn ensured they were comfortable verbalising and assured them that the process was confidential. Thinking out loud gave participants the opportunity to reflect and to think critically about their responses. Some found that by thinking out loud they were able to better understand the statements in their own mind and felt they were therefore able to provide a more authentic response. Because of these benefits, participants conveyed that the think-aloud yarn is a vitally important component in testing items and developing measures for Aboriginal and Torres Strait Islander people. Conclusions: Overall, our study found that the think-aloud yarn is acceptable to Aboriginal and Torres Strait Islander peoples and therefore a suitable method for use in studies that involve them. [ABSTRACT FROM AUTHOR]

Background: There is a long history of research being conducted on Aboriginal and Torres Strait Islander peoples that has offered questionable benefit but occasioned great distress and distrust. Using research methods that are suitable and acceptable to Aboriginal and Torres Strait Islander peoples is a critically important step towards restoring trust and improving the accessibility and relevancy of research that better addresses the needs of Aboriginal and Torres Strait Islander peoples. The current research aims to qualitatively evaluate Aboriginal and Torres Strait Islander peoples' perceptions of the suitability and acceptability of engaging in a think-aloud interview embedded in an individual yarn; a think-aloud yarn. Methods: We employed the think-aloud method as part of the larger What Matters 2Adults study. Aboriginal and Torres Strait Islander participants were engaged in a think-aloud yarn, then immediately following, a follow-up yarn to explore the acceptability of the think-aloud method. The follow-up yarns were audio recorded, transcribed verbatim, and analysed utilising reflexive thematic analysis with an Indigenous epistemological lens. Results: A total of 17 Aboriginal and Torres Strait Islander adults participated in our study. Participants reported that taking part in the think-aloud yarn was acceptable, not difficult and was less onerous than writing down their thoughts. Engaging participants in a social yarn before the think-aloud research yarn ensured they were comfortable verbalising and assured them that the process was confidential. Thinking out loud gave participants the opportunity to reflect and to think critically about their responses. Some found that by thinking out loud they were able to better understand the statements in their own mind and felt they were therefore able to provide a more authentic response. Because of these benefits, participants conveyed that the think-aloud yarn is a vitally important component in testing items and developing measures for Aboriginal and Torres Strait Islander people. Conclusions: Overall, our study found that the think-aloud yarn is acceptable to Aboriginal and Torres Strait Islander peoples and therefore a suitable method for use in studies that involve them. [ABSTRACT FROM AUTHOR]

Conducting community-based participatory research (CBPR) is a complex endeavor, particularly when training non-academic community members. Though examples of CBPR training programs and protocols have been published, they often address a limited set of concepts and are tailored for university or medical school students. Here, we describe the process of developing an online CBPR training program for American Indian (United States) and Indigenous (Canada) community members to conduct multi-sited ethnographic dementia research. This program is unique in its breadth and depth, as our program covers CBPR theory, methods, practical research, and administrative skills. Significantly, this program centers Indigenous methodology, pedagogy, and processes such as two-eyed seeing, storywork, and decolonization approaches. Key to this training program is a "second-generation" approach which incorporates experiential knowledge from a prior community-based researcher and academic partners and is designed to develop CBPR capacity among community-based researchers and partnering communities. In this paper, we detail the experience of the first cohort of learners and subsequent improvement of the training materials. Unique challenges related to the specific research focus (dementia), population/setting (American Indian/First Nations communities), and technology (rural digital infrastructure) are also discussed. [ABSTRACT FROM AUTHOR]

The primary objective of this systematic review was to investigate how Western focus groups and Indigenous sharing circles have been blended for the study of Indigenous children's health. The secondary objective of this study was to propose recommendations for adapting focus groups to include elements of sharing circles. This systematic review was conducted using a systematic search of original research articles published between 2009 and 2020 that (a) focused on North American Indigenous children's health and (b) used group-based qualitative methods including focus groups and sharing circles. Each of the articles was screened for relevance and quality. The methods sections were reviewed, subjected to qualitative content analysis, and codes were analyzed to identify common themes and synthesize results. We identified 29 articles, most of which followed a community-based participatory research approach. In these publications, most included a community advisory board, ethics approval was obtained, and in some cases, community members were included as research assistants. There was evidence that sharing circles and focus group methods had been blended in the recent Indigenous children's health literature. This was particularly apparent in the authors' approaches to recruitment, location, facilitation techniques, question format and reimbursement. Several groups have published results that describe approaches that successfully incorporated aspects of Indigenous sharing circles into Western focus groups, thus establishing a research method that is culturally safe and appropriate for the study of Indigenous children's health. [ABSTRACT FROM AUTHOR]