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What does it mean to conduct participatory research with Indigenous peoples? A lexical review.

ABSTRACT: BACKGROUND:To better understand and promote public health, participatory research with Indigenous peoples represents recommended practice, worldwide. However, due to the different ways such research is referred to, described, and used, it is unclear what might (and might not) warrant the term when collaborating with Indigenous peoples. As such, this article expands conceptual understandings of participatory research with Indigenous peoples, across timelines and regions. METHOD:Following a systematic search of 29 academic databases in April 2018, a lexical analysis of the methods sections was conducted, which were sourced from 161 publications across 107 journals. RESULTS:The active involvement of Indigenous peoples in research that is expressly participatory is limited across all project phases. This might be because the ways in which Indigenous peoples were involved throughout were not reported - however, it might also be because Indigenous peoples were not involved in all project phases. Furthermore, descriptions differ by study location and publication timeframe - notably, studies in the region of the Americas chiefly refer to pandemics, surveyors, and art; and those published in the last two decades have given primacy to artifacts of interest. CONCLUSIONS:Findings from this corpus of data suggest participatory research with Indigenous peoples is not always described across different project phases; furthermore, it differs according to study location and publication timeframe. This offers considerable opportunity to further this important research area via alternative methodologies that award primacy to Indigenous expertise and agency.

SUBMITTER: Dadich A

PROVIDER: S-EPMC6819462 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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What does it mean to conduct participatory research with Indigenous peoples? A lexical review.

Dadich Ann A Moore Loretta L Eapen Valsamma V

BMC public health 20191029 1

<h4>Background</h4>To better understand and promote public health, participatory research with Indigenous peoples represents recommended practice, worldwide. However, due to the different ways such research is referred to, described, and used, it is unclear what might (and might not) warrant the term when collaborating with Indigenous peoples. As such, this article expands conceptual understandings of participatory research with Indigenous peoples, across timelines and regions.<h4>Method</h4>Fol ...[more]

PMID: 31660911

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Project description:Community-driven research in primary healthcare (PHC) may reduce the chronic disease burden in Indigenous peoples. This systematic review assessed the cultural safety of reports of research on PHC use by Indigenous peoples from four countries with similar colonial histories. Medline, CINAHL and Embase were all systematically searched from 1st January 2002 to 4th April 2023. Papers were included if they were original studies, published in English and included data (quantitative, qualitative and/or mixed methods) on primary healthcare use for chronic disease (chronic kidney disease, cardiovascular disease and/or diabetes mellitus) by Indigenous Peoples from Western colonial countries. Study screening and data extraction were undertaken independently by two authors, at least one of whom was Indigenous. The baseline characteristics of the papers were analyzed using descriptive statistics. Aspects of cultural safety of the research papers were assessed using two quality appraisal tools: the CONSIDER tool and the CREATE tool (subset analysis). This systematic review was conducted in accordance with the Assessing the Methodological Quality of Systematic Reviews (AMSTAR) tool. We identified 35 papers from Australia, New Zealand, Canada, and the United States. Most papers were quantitative (n = 21) and included data on 42,438 people. Cultural safety across the included papers varied significantly with gaps in adequate reporting of research partnerships, provision of clear collective consent from participants and Indigenous research governance throughout the research process, particularly in dissemination. The majority of the papers (94%, 33/35) stated that research aims emerged from communities or empirical evidence. We also found that 71.4% (25/35) of papers reported of using strengths-based approaches by considering the impacts of colonization on reduced primary healthcare access. Research on Indigenous PHC use should adopt more culturally safe ways of providing care and producing research outputs which are relevant to community needs by privileging Indigenous voices throughout the research process including dissemination. Indigenous stakeholders should participate more formally and explicitly throughout the process to guide research practices, inclusive of Indigenous values and community needs.

Project description:BACKGROUND:Suicide is the second leading cause of death among adolescents worldwide, and is a major driver of health inequity among Indigenous people in high-income countries. However, little is known about the burden of suicide among Indigenous populations in low- and middle-income nations, and no synthesis of the global data is currently available. Our objective was to examine the global incidence of suicide among Indigenous peoples and assess disparities through comparisons with non-Indigenous populations. METHODS:We conducted a systematic review of suicide rates among Indigenous peoples worldwide and assessed disparities between Indigenous and non-Indigenous populations. We performed text word and Medical Subject Headings searches in PubMed, MEDLINE, Embase, Cumulative Index of Nursing and Allied Health (CINAHL), PsycINFO, Latin American and Caribbean Health Sciences Literature (LILACS), and Scientific Electronic Library Online (SciELO) for observational studies in any language, indexed from database inception until June 1, 2017. Eligible studies examined crude or standardized suicide rates in Indigenous populations at national, regional, or local levels, and examined rate ratios for comparisons to non-Indigenous populations. RESULTS:The search identified 13,736 papers and we included 99. Eligible studies examined suicide rates among Indigenous peoples in 30 countries and territories, though the majority focused on populations in high-income nations. Results showed that suicide rates are elevated in many Indigenous populations worldwide, though rate variation is common, and suicide incidence ranges from 0 to 187.5 suicide deaths per 100,000 population. We found evidence of suicide rate parity between Indigenous and non-Indigenous populations in some contexts, while elsewhere rates were more than 20 times higher among Indigenous peoples. CONCLUSIONS:This review showed that suicide rates in Indigenous populations vary globally, and that suicide rate disparities between Indigenous and non-Indigenous populations are substantial in some settings but not universal. Including Indigenous identifiers and disaggregating national suicide mortality data by geography and ethnicity will improve the quality and relevance of evidence that informs community, clinical, and public health practice in Indigenous suicide prevention.

Project description:BackgroundThere 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.MethodsGuided 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.DiscussionThis 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 registrationOpen Science Framework ( https://osf.io/rvf7q ).

Project description:IntroductionParticipatory 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.MethodsEleven 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.ResultsFew 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.ConclusionAs 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.

Project description:While cancer survivors commonly experience fear and anxiety, a substantial minority experience an enduring and debilitating fear that their cancer will return; a condition commonly referred to as fear of cancer recurrence (FCR). Despite recent advances in this area, little is known about FCR among people from Indigenous or other ethnic and racial minority populations. Given the high prevalence and poor outcomes of cancer among people from these populations, a robust understanding of FCR among people from these groups is critical. The current review identified and aggregated existing literature on FCR amongst adult cancer survivors from Indigenous and minority populations. The protocol of this review was registered with PROSPERO in July 2020 (Registration number: CRD42020161655). A systematic search of bibliographic databases was conducted for relevant articles published from 1997 to November 2019. Data from eligible articles were extracted and appraised for quality by two independent reviewers. Nineteen articles from four countries (United States of America, Canada, Australia and the United Kingdom) met the inclusion criteria, including 14 quantitative, 4 qualitative and 1 mixed-methods study. Only one article reported on an Indigenous population. Few studies reported on FCR prevalence (n = 3) or severity (n = 9). While the variation in tools used to measure FCR hindered a robust estimate of severity, results suggested some differences in FCR severity between minority and dominant populations, although these may have been due to study metholodological differences. Few factors were reported as being associated with FCR in minorities across multiple studies. The qualitative synthesis found five themes associated with the lived experience of FCR: (i) variations in the lived experience of FCR; (ii) spirituality and worldview impacting on FCR; (iii) the importance of staying positive; (iv) complexities around support; and (v) increasing cancer knowledge. The findings of this review highlight differences in FCR across cultures and contexts, which reinforces the need for culturally-specific approaches to this condition. The dearth of research in this area is of concern given the significant burden of cancer in these populations. A deeper understanding of this condition among Indigenous and minority populations is critical to developing and delivering appropriate and effective psychosocial care for cancer survivors from these groups. Systematic Review Registration: identifier [CRD42020161655].

Project description:Indigenous communities in Latin America and elsewhere have complex bodies of knowledge, but Western health services generally approach them as vulnerable people in need of external solutions. Intercultural dialogue recognises the validity and value of Indigenous standpoints, and participatory research promotes reciprocal respect for stakeholder input in knowledge creation.As part of their decades-long community-based work in Mexico's Guerrero State, researchers at the Centro de Investigación de Enfermedades Tropicales responded to the request from Indigenous communities to help them address poor maternal health. We present the experience from this participatory research in which both parties contributed to finding solutions for a shared concern. The aim was to open an intercultural dialogue by respecting Indigenous skills and customs, recognising the needs of health service stakeholders for scientific evidence.Three steps summarise the opening of intercultural dialogue. Trust building and partnership based on mutual respect and principles of cultural safety. This focused on understanding traditional midwifery and the cultural conflicts in healthcare for Indigenous women. A pilot randomised controlled trial was an opportunity to listen and to adjust the lexicon identifying and testing culturally coherent responses for maternal health led by traditional midwives. Codesign, evaluation and discussion happened during a full cluster randomised trial to identify benefits of supporting traditional midwifery on maternal outcomes. A narrative mid-term evaluation and cognitive mapping of traditional knowledge offered additional evidence to discuss with other stakeholders the benefits of intercultural dialogue. These steps are not mechanistic or invariable. Other contexts might require additional steps. In Guerrero, intercultural dialogue included recovering traditional midwifery and producing high-level epidemiological evidence of the value of traditional midwives, allowing service providers to draw on the strengths of different cultures.

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What does it mean to conduct participatory research with Indigenous peoples? A lexical review.

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What does it mean to conduct participatory research with Indigenous peoples? A lexical review.

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