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

PLoS ONE ◽  
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.

scholarly journals 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

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.

scholarly journals Community engagement approaches for Indigenous health research: recommendations based on an integrative review

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e039736
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 ◽  
Community Settings ◽  
Comprehensive List ◽  
The Usa ◽  
Research Recommendations

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.

scholarly journals Health-Related Participatory Research in American Indian and Alaska Native Communities: A Scoping Review

2019 ◽  
Vol 16 (16) ◽  
pp. 2969 ◽  
Author(s):  
R. Brian Woodbury ◽  
Scott Ketchum ◽  
Vanessa Y. Hiratsuka ◽  
Paul Spicer
Keyword(s):  
American Indian ◽  
Community Engagement ◽  
Participatory Research ◽  
Scoping Review ◽  
Alaska Native ◽  
Cultural Adaptation ◽  
Community Level ◽  
Native Communities ◽  
Health Related ◽  
Data Points

A scoping review was conducted to assess the state of the literature on health-related participatory research involving American Indian and Alaska Native communities. Online databases were searched for relevant articles published between 1/1/2000 and 5/31/2017. 10,000+ data points relevant to community-level engagement in and regulation of research, community research capacity and cultural adaptation were extracted from 178 articles. Community engagement varied across study components: 136 (76%) articles reported community participation in research-related meetings and other events and 49 (27%) articles reported community involvement in initiation of research. 156 (88%) articles reported use of community-level tools to guide or regulate research. 93 (52%) articles reported that community members received research-related training. 147 (82%) articles described some type of cultural adaptation. Across all articles, data points on community engagement were not reported in 3061 (40%) out of 7740 cases. Findings suggest a need for increased community engagement in early stages of the research process and for reporting guidelines for participatory research involving American Indian and Alaska Native communities. There is also need to further existing research on the impact of different components of participatory research on process and outcome measures and to develop funding mechanisms that account for the time and resource intensive nature of participatory research.

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

2021 ◽  
pp. 113947
Author(s):  
Tara White ◽  
Kathleen Murphy ◽  
Karina Branje ◽  
Shelley McKibbon ◽  
Ashlee Cunsolo ◽  
...  
Keyword(s):  
Scoping Review ◽  
Health Research ◽  
Indigenous Health ◽  
Atlantic Canada

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

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)

scholarly journals 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

2018 ◽  
Vol 9 (1) ◽  
pp. e21-32 ◽  
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. 

scholarly journals Community Engagement Approaches for Indigenous Health Research: an Integrative Review

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.

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

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.

scholarly journals Young people’s advisory groups in health research: scoping review and mapping of practices

2020 ◽  
pp. archdischild-2020-320452 ◽  
Author(s):  
Elise Sellars ◽  
Gabriela Pavarini ◽  
Daniel Michelson ◽  
Cathy Creswell ◽  
Mina Fazel
Keyword(s):  
Scoping Review ◽  
Health Research ◽  
Empirical Studies ◽  
Research Process ◽  
Primary Data ◽  
Research Activity ◽  
Level Of Involvement ◽  
Additional Information ◽  
Advisory Groups ◽  
The Impact

BackgroundYoung people’s advisory groups (YPAGs) for research are comprised of children or adolescents who work with researchers to shape different stages of the research process. Their involvement is expected to ensure studies better reflect the preferences and needs of targeted youth populations. However, despite their increasing use in health research, there is little systematic evidence on the methods and impacts associated with YPAGs.MethodTo address this gap, we conducted a scoping review of YPAGs in youth-focused health studies. We systematically searched MEDLINE for empirical studies in populations between 12 years and 18 years of age published in 2019. If a potential YPAG was identified, authors were contacted for additional information about the activities and level of involvement of the YPAG.FindingsOf all studies that collected primary data from persons aged 12–18 years, only 21 studies reported using youth advice during their research. This represents less than 1% of all published empirical child and adolescent studies. There was variation in the type of research activity undertaken by YPAGs and their level of involvement. Most studies involved YPAGs in co-production of research design and/or in dissemination activities. The majority of authors that responded were positive about the impact of YPAGs.InterpretationRecommendations for consistent reporting of YPAG involvement in empirical studies include reporting on the match between YPAG and study populations, frequency/format of meetings, and the nature and level of involvement.

scholarly journals Community Protections in American Indian and Alaska Native Participatory Research—A Scoping Review

2019 ◽  
Vol 8 (4) ◽  
pp. 127 ◽  
Author(s):  
Julie A. Beans ◽  
Bobby Saunkeah ◽  
R. Brian Woodbury ◽  
Terry S. Ketchum ◽  
Paul G. Spicer ◽  
...  
Keyword(s):  
American Indian ◽  
Participatory Research ◽  
Scoping Review ◽  
Alaska Native ◽  
Research Process ◽  
Community Level ◽  
Community Collaboration ◽  
Protection Measures ◽  
Research Regulation ◽  
Community Protection

Experiences with unethical research practices have caused some American Indian and Alaska Native (AIAN) individuals, organizations, and tribes to mistrust health research. To build trust and repair relationships, current research with AIAN peoples often involves participatory research (PR) approaches. This article assesses community-level protections described in the scientific literature on PR involving AIAN communities. A scoping review search in PubMed and PsychInfo for articles published between January 2000 and June 2017 yielded an AIAN PR article dataset. Of 178 articles, a subset of 23 articles that described aspects of community protections were analyzed for descriptions of community-level protection practices. We identified the presence or absence of a description of four community protection measures in each article: a tribal research department, the development of community-level mechanisms for research regulation if not present, community collaboration throughout the research process, and project employment of a community member. The development of community-level mechanisms for research regulation was described in 39% of the articles. Ninety-one percent of these articles described community collaboration during the research process. Seventeen percent included descriptions of all four community-level protection measures. The extent and consistency to which community-level protections are described is variable; the current literature lacks reporting on community-level protection practices specific to tribal communities.

Sign in / Sign up

Export Citation Format

Share Document