“What Do They Really Mean by Partnerships?” Questioning the Unquestionable Good in Ethics Guidelines Promoting Community Engagement in Indigenous Health Research

ObjectiveCommunity engagement practices in Indigenous health research are promoted as a means of decolonising research, but there is no comprehensive synthesis of approaches in the literature. Our aim was to assemble and qualitatively synthesise a comprehensive list of actionable recommendations to enhance community engagement practices with Indigenous peoples in Canada, the USA, Australia and New Zealand.DesignIntegrative review of the literature in medical (Medline, Cumulative Index to Nursing and Allied Health Literature and Embase) and Google and WHO databases (search cut-off date 21 July 2020).Article selectionStudies that contained details regarding Indigenous community engagement frameworks, principles or practices in the field of health were included, with exclusion of non-English publications. Two reviewers independently screened the articles in duplicate and reviewed full-text articles.AnalysisRecommendations for community engagement approaches were extracted and thematically synthesised through content analysis.ResultsA total of 63 studies were included in the review, with 1345 individual recommendations extracted. These were synthesised into a list of 37 recommendations for community engagement approaches in Indigenous health research, categorised by stage of research. In addition, activities applicable to all phases of research were identified: partnership and trust building and active reflection.ConclusionsWe provide a comprehensive list of recommendations for Indigenous community engagement approaches in health research. A limitation of this review is that it may not address all aspects applicable to specific Indigenous community settings and contexts. We encourage anyone who does research with Indigenous communities to reflect on their practices, encouraging changes in research processes that are strengths based.

Download Full-text

Are we walking the talk of participatory Indigenous health research? A scoping review of the literature in Atlantic Canada

PLoS ONE ◽

10.1371/journal.pone.0255265 ◽

2021 ◽

Vol 16 (7) ◽

pp. e0255265

Author(s):

Kathleen Murphy ◽

Karina Branje ◽

Tara White ◽

Ashlee Cunsolo ◽

Margot Latimer ◽

...

Keyword(s):

Community Engagement ◽

Participatory Research ◽

Scoping Review ◽

Health Research ◽

Indigenous Health ◽

Indigenous Communities ◽

Research Process ◽

Atlantic Canada ◽

Health Related ◽

Canada Data

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.

Download Full-text

Enhancing Indigenous health research capacity in northern Ontario through distributed community engaged medical education at NOSM: A qualitative evaluation of the community engagement through research pilot program

Canadian Medical Education Journal ◽

10.36834/cmej.42187 ◽

2018 ◽

Vol 9 (1) ◽

pp. e21-32 ◽

Cited By ~ 1

Author(s):

Marion Maar ◽

Lisa Boesch ◽

Sheldon Tobe

Keyword(s):

Medical Education ◽

Medical Students ◽

Community Engagement ◽

Health Research ◽

Research Training ◽

Indigenous Health ◽

Indigenous Communities ◽

Social Accountability ◽

Community Based ◽

The Social

Background: The Community Engagement Through Research (CETR) program matches Indigenous communities interested in exploring their own health research questions with NOSM learners seeking experience in health services research, supervised by faculty experienced in community-based participatory research.Methods: Qualitative research was conducted using key informant interviews to examine outcomes of the matching of medical students with Indigenous distributed medical education (DME) communities in NOSM’s distributed curriculum, in particular improvements for capacity for Indigenous health research in Northern Ontario.Results: Interviews showed that community-centred research was appreciated by community, students and faculty and the social accountability aspect was acknowledged. Students and community members found meaning in the immediate applicability of the research to real community problems and felt inspired by it. The challenges that were identified were mainly related to time and resource constraints, including providing sufficient research training for learners, and the time period required for research ethics board approvals. Conclusions: The program successfully brought together communities interested in conducting their own health research, with medical students interested in learning about and conducting health research with Indigenous communities. It is therefore an example of successful community based participatory research supporting the social accountability mandate. Challenges are mainly administrative in nature. The program has the potential to be scalable and financially sustainable.

Download Full-text

Community Engagement Approaches for Indigenous Health Research: an Integrative Review

10.21203/rs.2.20805/v1 ◽

2020 ◽

Author(s):

Chu Yang Lin ◽

Adalberto Loyola-Sanchez ◽

Elaine Boyling ◽

Cheryl Barnabe

Keyword(s):

Community Engagement ◽

Health Research ◽

Indigenous Health ◽

Indigenous Communities ◽

Indigenous Community ◽

Integrative Review ◽

World Health ◽

Comprehensive List ◽

Health Organization ◽

Cutoff Date

Abstract Background Community engagement practices in Indigenous Health research are promoted as a means of decolonizing research, but there is no comprehensive synthesis of approaches in the literature. Our aim was to assemble and qualitatively synthesize a comprehensive list of actionable recommendations to enhance community engagement practices with Indigenous Peoples.MethodsWe performed an integrative review of literature in medical (Medline, CINAHL and Embase), as well as Google and World Health Organization databases (search cutoff date November 17, 2018). Studies that contained details regarding Indigenous community engagement frameworks, principles or practices in the field of health were included, with exclusion of non-English publications. Two reviewers independently screened the articles in duplicate and reviewed full text articles. Recommendations for community engagement approaches were extracted and thematically synthesized through content analysis.Results A total of 52 studies were included in the review, with 1268 individual recommendations extracted. These were synthesized into a list of 37 recommendations for community engagement approaches in Indigenous health research, categorized by stage of research. In addition, activities applicable to all phases of research were identified: partnership and trust building, and active reflection.Conclusions We provide a comprehensive list of recommendations for Indigenous community engagement approaches in health research. A limitation of this review is that it may not address all aspects applicable to specific Indigenous community settings and contexts. We encourage anyone who does research with Indigenous communities to reflect upon their practices, encouraging changes in research processes that are strengths-based.

Download Full-text

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

Download Full-text

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

Download Full-text

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.

Download Full-text

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.

Download Full-text

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.

Download Full-text

The Journey on Indigenous Health Research

Relatuhedron ◽

10.1007/978-3-030-87208-3_2 ◽

2021 ◽

pp. 13-33

Author(s):

Juan Carlos Rodriguez Camacho

Keyword(s):

Health Research ◽

Indigenous Health

Download Full-text