How has Indigenous Health Research Changed in Atlantic Canada Over Two Decades? A Scoping Review from 2001-2020

Introduction Participatory research involving community engagement is considered the gold standard in Indigenous health research. However, it is sometimes unclear whether and how Indigenous communities are engaged in research that impacts them, and whether and how engagement is reported. Indigenous health research varies in its degree of community engagement from minimal involvement to being community-directed and led. Research led and directed by Indigenous communities can support reconciliation and reclamation in Canada and globally, however clearer reporting and understandings of community-led research is needed. This scoping review assesses (a) how and to what extent researchers are reporting community engagement in Indigenous health research in Atlantic Canada, and (b) what recommendations exist in the literature regarding participatory and community-led research. Methods Eleven databases were searched using keywords for Indigeneity, geographic regions, health, and Indigenous communities in Atlantic Canada between 2001-June 2020. Records were independently screened by two reviewers and were included if they were: peer-reviewed; written in English; health-related; and focused on Atlantic Canada. Data were extracted using a piloted data charting form, and a descriptive and thematic analysis was performed. 211 articles were retained for inclusion. Results Few empirical articles reported community engagement in all aspects of the research process. Most described incorporating community engagement at the project’s onset and/or during data collection; only a few articles explicitly identified as entirely community-directed or led. Results revealed a gap in reported capacity-building for both Indigenous communities and researchers, necessary for holistic community engagement. Also revealed was the need for funding bodies, ethics boards, and peer review processes to better facilitate participatory and community-led Indigenous health research. Conclusion As Indigenous communities continue reclaiming sovereignty over identities and territories, participatory research must involve substantive, agreed-upon involvement of Indigenous communities, with community-directed and led research as the ultimate goal.

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Elevating the uses of storytelling approaches within Indigenous health research: a critical and participatory scoping review protocol involving Indigenous people and settlers

Systematic Reviews ◽

10.1186/s13643-020-01503-6 ◽

2020 ◽

Vol 9 (1) ◽

Author(s):

Kendra L. Rieger ◽

Sarah Gazan ◽

Marlyn Bennett ◽

Mandy Buss ◽

Anna M. Chudyk ◽

...

Keyword(s):

Indigenous Peoples ◽

Scoping Review ◽

Health Research ◽

Mixed Methods Research ◽

Healthcare Professionals ◽

Indigenous Health ◽

Healthcare Providers ◽

Indigenous Communities ◽

Open Science ◽

Review Protocol

Abstract Background There is a complicated and exploitative history of research with Indigenous peoples and accompanying calls to meaningfully and respectfully include Indigenous knowledge in healthcare. Storytelling approaches that privilege Indigenous voices can be a useful tool to break the hold that Western worldviews have within the research. Our collaborative team of Indigenous and non-Indigenous researchers, and Indigenous patients, Elders, healthcare providers, and administrators, will conduct a critical participatory, scoping review to identify and examine how storytelling has been used as a method in Indigenous health research. Methods Guided by two-eyed seeing, we will use Bassett and McGibbon’s adaption of Arksey and O’Malley’s scoping review methodology. Relevant articles will be identified through a systematic search of the gray literature, core Indigenous health journals, and online databases including Scopus, MEDLINE, Embase, CINAHL, AgeLine, Academic Search Complete, Bibliography of Native North Americans, Canadian Reference Centre, and PsycINFO. Qualitative and mixed-methods research articles will be included if the researchers involved Indigenous participants or their healthcare professionals living in Turtle Island (i.e., Canada and the USA), Australia, or Aotearoa (New Zealand); use storytelling as a research method; focus on healthcare phenomena; and are written in English. Two reviewers will independently screen titles/abstracts and full-text articles. We will extract data, identify the array of storytelling approaches, and critically examine how storytelling was valued and used. An intensive collaboration will be woven throughout all review stages as academic researchers co-create this work with Indigenous patients, Elders, healthcare professionals, and administrators. Participatory strategies will include four relational gatherings throughout the project. Based on our findings, we will co-create a framework to guide the respectful use of storytelling as a method in Indigenous health research involving Indigenous and non-Indigenous peoples. Discussion This work will enable us to elucidate the extent, range, and nature of storytelling within Indigenous health research, to critically reflect on how it has been and could be used, and to develop guidance for the respectful use of this method within research that involves Indigenous peoples and settlers. Our findings will enable the advancement of storytelling methods which meaningfully include Indigenous perspectives, practices, and priorities to benefit the health and wellbeing of Indigenous communities. Systematic review protocol registration Open Science Framework (https://osf.io/rvf7q)

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How is Etuaptmumk/Two-Eyed Seeing characterized in Indigenous health research? A scoping review

PLoS ONE ◽

10.1371/journal.pone.0254612 ◽

2021 ◽

Vol 16 (7) ◽

pp. e0254612

Author(s):

Sophie I. G. Roher ◽

Ziwa Yu ◽

Debbie H. Martin ◽

Anita C. Benoit

Keyword(s):

Scoping Review ◽

Health Research ◽

Review Process ◽

Indigenous Health ◽

Self Determination ◽

Future Generations ◽

Guiding Principle ◽

Learning Journey ◽

Greater Good

Our scoping review sought to consider how Etuaptmumk or Two-Eyed Seeing is described in Indigenous health research and to compare descriptions of Two-Eyed Seeing between original authors (Elders Albert and Murdena Marshall, and Dr. Cheryl Bartlett) and new authors. Using the JBI scoping review methodology and qualitative thematic coding, we identified seven categories describing the meaning of Two-Eyed Seeing from 80 articles: guide for life, responsibility for the greater good and future generations, co-learning journey, multiple or diverse perspectives, spirit, decolonization and self-determination, and humans being part of ecosystems. We discuss inconsistencies between the original and new authors, important observations across the thematic categories, and our reflections from the review process. We intend to contribute to a wider dialogue about how Two-Eyed Seeing is understood in Indigenous health research and to encourage thoughtful and rich descriptions of the guiding principle.

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Communities take the lead: exploring Indigenous health research practices through Two-Eyed Seeing & kinship

International Journal of Circumpolar Health ◽

10.1080/22423982.2021.1929755 ◽

2021 ◽

Vol 80 (1) ◽

pp. 1929755

Author(s):

John R. Sylliboy ◽

Margot Latimer ◽

Elder Albert Marshall ◽

Emily MacLeod

Keyword(s):

Health Research ◽

Indigenous Health ◽

Research Practices

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Beyond deficit: ‘strengths‐based approaches’ in Indigenous health research

Sociology of Health & Illness ◽

10.1111/1467-9566.13311 ◽

2021 ◽

Author(s):

Joanne Bryant ◽

Reuben Bolt ◽

Jessica R. Botfield ◽

Kacey Martin ◽

Michael Doyle ◽

...

Keyword(s):

Health Research ◽

Indigenous Health

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What do you mean by engagement? – evaluating the use of community engagement in the design and implementation of chronic disease-based interventions for Indigenous populations – scoping review

International Journal for Equity in Health ◽

10.1186/s12939-020-01346-6 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Sahr Wali ◽

Stefan Superina ◽

Angela Mashford-Pringle ◽

Heather Ross ◽

Joseph A. Cafazzo

Keyword(s):

Chronic Disease ◽

Health Outcomes ◽

Community Engagement ◽

Participatory Research ◽

Scoping Review ◽

Indigenous Health ◽

Well Being ◽

Indigenous Populations ◽

Local Context ◽

Engagement Strategies

Abstract Background Indigenous populations have remained strong and resilient in maintaining their unique culture and values, despite centuries of colonial oppression. Unfortunately, a consequential result of facing years of adversity has led Indigenous populations to experience a disproportionate level of poorer health outcomes compared to non-Indigenous populations. Specifically, the rate of Indigenous chronic disease prevalence has significantly increased in the last decade. Many of the unique issues Indigenous populations experience are deeply rooted in their colonial history and the intergenerational traumas that has subsequently impacted their physical, mental, emotional and spiritual well-being. With this, to better improve Indigenous health outcomes, understanding the local context of their challenges is key. Studies have begun to use modes of community engagement to initiate Indigenous partnerships and design chronic disease-based interventions. However, with the lack of a methodological guideline regarding the appropriate level of community engagement to be used, there is concern that many interventions will continue to fall short in meeting community needs. Objective The objective of this study was to investigate the how various community engagement strategies have been used to design and/or implement interventions for Indigenous populations with chronic disease. Methods A scoping review guided by the methods outlined by Arksey and O’Malley was conducted. A comprehensive search was completed by two reviewers in five electronic databases using keywords related to community engagement, Indigenous health and chronic disease. Studies were reviewed using a descriptive-analytical narrative method and data was categorized into thematic groups reflective of the main findings. Results We identified 23 articles that met the criteria for this scoping review. The majority of the studies included the use a participatory research model and the procurement of study approval. However, despite the claimed use of participatory research methods, only 6 studies had involved community members to identify the area of priority and only five had utilized Indigenous interview styles to promote meaningful feedback. Adapting for the local cultural context and the inclusion of community outreach were identified as the key themes from this review. Conclusion Many studies have begun to adopt community engagement strategies to better meet the needs of Indigenous Peoples. With the lack of a clear guideline to approach Indigenous-based participatory research, we recommend that researchers focus on 1) building partnerships, 2) obtaining study approval and 3) adapting interventions to the local context.

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A scoping review of considerations and practices for benefit sharing in biobanking

BMC Medical Ethics ◽

10.1186/s12910-021-00671-x ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Allan Sudoi ◽

Jantina De Vries ◽

Dorcas Kamuya

Keyword(s):

Scoping Review ◽

Health Research ◽

Empirical Studies ◽

Benefit Sharing ◽

Cochrane Library ◽

Policy And Practice ◽

Online Databases ◽

Expected Benefits ◽

Future Policy ◽

Distinct Features

Abstract Background Despite the rapid global growth of biobanking over the last few decades, and their potential for the advancement of health research, considerations specific to the sharing of benefits that accrue from biobanks have received little attention. Questions such as the types and range of benefits that can arise in biobanking, who should be entitled to those benefits, when they should be provided, by whom and in what form remain mostly unanswered. We conducted a scoping review to describe benefit sharing considerations and practices in biobanking in order to inform current and future policy and practice. Methods Drawing on the Arksey and O’Malley framework, we conducted a scoping review of the literature in three online databases (PubMed, Cochrane library, and Google Scholar). We extracted and charted data to capture general characteristics, definitions and examples of benefits and benefit sharing, justification for benefit sharing, challenges in benefit sharing, governance mechanisms as well as proposed benefit sharing mechanisms. Results 29 articles published between 1999 and 2020 met the inclusion criteria for the study. The articles included 5 empirical and 24 non-empirical studies. Only 12 articles discussed benefit sharing as a stand-alone subject, while the remaining 17 integrated a discussion of benefits as one issue amongst others. Major benefit sharing challenges in biobanking were found to be those associated with uncertainties around the future use of samples and in resultant benefits. Conclusion Most of the benefit sharing definitions and approaches currently in use for biobanking are similar to those used in health research. These approaches may not recognise the distinct features of biobanking, specifically relating to uncertainties associated with the sharing and re-use of samples. We therefore support approaches that allow decisions about benefit sharing to be made progressively once it is apparent who samples are to be shared with, the intended purpose and expected benefits. We also highlight gaps in key areas informing benefit sharing in biobanking and draw attention to the need for further empirical research.

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Five Approaches to Qualitative Comparison Groups in Health Research: A Scoping Review

Qualitative Health Research ◽

10.1177/1049732318807208 ◽

2018 ◽

Vol 29 (3) ◽

pp. 455-468 ◽

Cited By ~ 5

Author(s):

Sally Lindsay

Keyword(s):

Scoping Review ◽

Health Research ◽

Lessons Learned ◽

Qualitative Comparison ◽

Qualitative Health Research ◽

Different Types ◽

Comparison Groups

Qualitative researchers have much to gain by using comparison groups. Although their use within qualitative health research is increasing, the guidelines surrounding them are lacking. The purpose of this article is to explore the extent to which qualitative comparison groups are being used within health research and to outline the lessons learned in using this type of methodology. Through conducting a scoping review, 31 articles were identified that demonstrated five different types of qualitative comparison groups. I highlight the key benefits and challenges in using this approach.

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Indigenous health disparities, a challenge and opportunity

Canadian Journal of Surgery ◽

10.1503/cjs.011718 ◽

2018 ◽

pp. 300-301

Author(s):

Alika Lafontaine

Keyword(s):

Health Disparities ◽

Health Research ◽

Indigenous Health ◽

Clinical Considerations

Clinical Indigenous health research is sparse and often not patient-centred. Despite a broad acknowledgement that Indigenous patients have unique clinical considerations, specific interventional research in Indigenous health is lacking.

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If We Show Them Will They Come? Attitudes of Native American Youth Towards Higher Education

First Peoples Child & Family Review: An Interdisciplinary Journal Honouring the Voices, Perspectives, and Knowledges of First Peoples ◽

10.7202/1069333ar ◽

2020 ◽

Vol 4 (2) ◽

pp. 99-105

Author(s):

Emmerentine Oliphant ◽

Sharon B. Templeman

Keyword(s):

Native American ◽

Health Research ◽

Indigenous Health ◽

Ways Of Knowing ◽

Indigenous Communities ◽

Native Community ◽

Research Methodologies ◽

General Validity ◽

Native Canadian ◽

Indigenous Ways Of Knowing

Indigenous health research should reflect the needs and benefits of the participants and their community as well as academic and practitioner interests. The research relationship can be viewed as co-constructed by researchers, participants, and communities, but this nature often goes unrecognized because it is confined by the limits of Western epistemology. Dominant Western knowledge systems assume an objective reality or truth that does not support multiple or subjective realities, especially knowledge in which culture or context is important, such as in Indigenous ways of knowing. Alternatives and critiques of the current academic system of research could come from Native conceptualizations and philosophies, such as Indigenous ways of knowing and Indigenous protocols, which are increasingly becoming more prominent both Native and non-Native societies. This paper contains a narrative account by an Indigenous researcher of her personal experience of the significant events of her doctoral research, which examined the narratives of Native Canadian counselors’ understanding of traditional and contemporary mental health and healing. As a result of this narrative, it is understood that research with Indigenous communities requires a different paradigm than has been historically offered by academic researchers. Research methodologies employed in Native contexts must come from Indigenous values and philosophies for a number of important reasons and with consequences that impact both the practice of research itself and the general validity of research results. In conclusion, Indigenous ways of knowing can form a new basis for understanding contemporary health research with Indigenous peoples and contribute to the evolution of Indigenous academics and research methodologies in both Western academic and Native community contexts.

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