scholarly journals Creating a Canadian Indigenous Research Network Against Cancer to Address Indigenous Cancer Disparities

2020 ◽  
pp. 92-98
Author(s):  
Angeline Letendre ◽  
Gail Garvey ◽  
Alexandra King ◽  
Malcolm King ◽  
Reg Crowshoe ◽  
...  
Keyword(s):  
Lived Experience ◽  
Indigenous Peoples ◽  
Research Priorities ◽  
Cancer Control ◽  
Indigenous Communities ◽  
Cancer Surveillance ◽  
Cancer Prognosis ◽  
Research Network ◽  
Indigenous Research ◽  
National Network

PURPOSE In Canada, Indigenous peoples’ cancer rates have increased, but cancer screening rates tend to be lower. When coupled with poor cancer prognosis, treatment barriers, and inaccessible health care, Indigenous patients with cancer experience many unmet needs. Further complicating their journey is a multijurisdictional system that complicates cancer control services, treatments, patient supports, and cancer surveillance. To address these issues, the Canadian Indigenous Research Network Against Cancer (CIRNAC) was developed. This article describes the forerunners and consultative process that created the network and the consensus model developed to ground this network with, by, and for Indigenous peoples. METHODS A consultative workshop was held to (1) establish and increase network membership, (2) enhance partnerships with Indigenous communities and other researchers, and (3) develop an Indigenous-led research program, new funding, and related initiatives. RESULTS Participants viewed the CIRNAC as a reflective parallel network led by Indigenous peoples that would identify research priorities within Canada, assess how these priorities align with Indigenous patients’ cancer care and research needs, and cross-check to see if these priorities align with each other. The network would also advocate for Indigenous elders/knowledge holders and community grassroot processes to drive research and training, thus demonstrating the power of the community voice and lived experience in research. In addition, the network would foster research partnerships to investigate alternative Indigenous models for cancer prevention, care, treatment, and support. CONCLUSION The CIRNAC evolved as a viable vehicle to address cancer with, for, and by Indigenous peoples. The network is guided by a preamble, a set of aims, and an inclusion engagement circle model. It is evolving through major world initiatives, with the aim of formally becoming an internationally linked national network.

He Āpiti Hono, He Tātai Hono: That Which is Joined Remains an Unbroken Line: Using Whakapapa (Genealogy) as the Basis for an Indigenous Research Framework

2005 ◽  
Vol 34 ◽  
pp. 86-95 ◽  
Author(s):  
James Graham
Keyword(s):  
Indigenous Peoples ◽  
Research Methodology ◽  
Indigenous Communities ◽  
Indigenous Research ◽  
Indigenous Identity ◽  
Research Framework ◽  
Research Paradigms ◽  
Unbroken Line

AbstractThis paper explores the notion of whakapapa as providing a legitimate research framework for engaging in research with Māori communities. By exploring the tradition and meaning of whakapapa, the paper will legitimate how whakapapa and an understanding of whakapapa can be used by Māori researchers working among Māori communities. Therefore, emphasis is placed on a research methodology framed by whakapapa that not only authenticates Māori epistemology in comparison with Western traditions, but that also supports the notion of a whakapapa research methodology being transplanted across the Indigenous world; Indigenous peoples researching among their Indigenous communities. Consequently, Indigenous identity is strengthened as is the contribution of the concept of whakapapa to Indigenous research paradigms worldwide.

Decolonizing Research Practice

2014 ◽  
pp. 178-192 ◽  
Author(s):  
Michael Evans ◽  
Adrian Miller ◽  
Peter J. Hutchinson ◽  
Carlene Dingwall
Keyword(s):  
Traditional Knowledge ◽  
Indigenous Peoples ◽  
Indigenous Communities ◽  
Knowledge Systems ◽  
Indigenous Research ◽  
Research Practice ◽  
Research Results ◽  
Dissemination Of Research ◽  
General Improvement ◽  
Indigenous Methods

Indigenous approaches to research are fundamentally rooted in the traditions and knowledge systems of Indigenous peoples themselves, although Indigenous methodologies and methods have become both systems for generating knowledge and ways of responding to the processes of colonization. Very specific Indigenous methods emerge from language, culture, and worldview. This chapter describes two such Indigenous research approaches drawn from the work of two Indigenous scholars with their communities in Australia and Canada. Although creative and new, these approaches draw deeply from their communities and thus express and enact traditional knowledge systems in contemporary terms. This approach may result in more pertinent research, better take-up and dissemination of research results, and a general improvement in the situations of Indigenous communities and peoples.

Supervision of Indigenous research students: considerations for cross-cultural supervisors

2017 ◽  
Vol 13 (4) ◽  
pp. 256-265 ◽  
Author(s):  
Denise Wilson
Keyword(s):  
Indigenous Peoples ◽  
Indigenous Communities ◽  
Cross Cultural ◽  
Indigenous Research ◽  
Indigenous Students ◽  
Supervisor Relationships ◽  
Indigenous Research Methodologies ◽  
Supervision Practices ◽  
Research Students

Essential to Indigenous research students’ development is their preparation to undertake Indigenous research with an appropriate Indigenous approach. Preparing Indigenous students to conduct research with Indigenous communities requires their adequate and proper preparation, although this does not always happen. Getting the research story right is key to better understanding the persistent, complex and multidimensional inequities in the access, use and quality of health services Indigenous peoples face. Successful preparation of Indigenous students is contingent on quality student–supervisor relationships. The literature indicates that Indigenous student supervision undertaken by non-Indigenous supervisors can be hindered. Two vignettes demonstrate problems with cross-cultural supervision of Indigenous research students’ experiences. An examination of cross-cultural supervision practices highlights the need to prepare Indigenous students in Indigenous research methodologies to optimise outcomes to reflect Indigenous peoples’ realities. Following an overview of approaches to undertake research with Indigenous people, strategies to support cross-cultural supervision are suggested.

scholarly journals Characterization of Research Priorities Among LMICS: A Qualitative Content Analysis of Cancer Control Plans

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 63s-63s
Author(s):  
I. Prabhu Das ◽  
B. Kostelecky
Keyword(s):  
Qualitative Content Analysis ◽  
Research Priorities ◽  
Cancer Control ◽  
Research Capacity ◽  
Cancer Surveillance ◽  
Research Infrastructure ◽  
World Health ◽  
Services Research ◽  
Control Plan ◽  
And Control

Background: The Cancer Resolution approved at the 2017 World Health Assembly highlighted the need to improve the evidence base for cancer prevention and control through research. Research priorities articulated in national cancer control plans can promote effective cancer control, especially in low and middle-income countries (LMIC) that bear a significant cancer burden and where local research is scarce. Understanding how LMICs address research in their cancer control plans may enhance integration of research and control efforts. Aim: We sought to systematically identify and characterize the research priorities in select LMIC cancer control plans. Methods: LMIC plans published in English and in 2016 or later, that met World Bank and Human Development Index criteria and were identified. Key terms were used to identify relevant research-related content. A systematic, inductive approach was used to examine for clusters of concepts or topics, and codes were applied to characterize the research priorities into categories, phases, types, dimensions and aspects. Results: A total of 12 LMIC plans were deemed to be eligible for the analysis. Two overarching categories of research-related content were identified: Establishing a Research Agenda (ERA), where specific types and topics of research were articulated, and Building Research Capacity (BRC), for content describing intention to plan or facilitate research. Six LMICs included a total of 67 ERA priorities involving five types of research. Health Services Research was the most frequently reported type of research (31%). The research topics in the treatment/management phase were most frequently identified (30%). Three of the six countries had the most number of ERA research priorities. A total of 126 BRC priorities were identified across five dimensions. Two BRC dimensions were most frequently proposed: Enhance Cancer Surveillance (44%) and Establish Research Infrastructure (24%), and subsequent aspect codes elucidated a range of activities. Five aspects characterized focal areas in cancer surveillance while two aspects revealed focal areas for research infrastructure. Country-specific variation in ERA and BRC priorities were seen. Priorities were mapped to illustrate the breadth and depth of research priorities in LMICs' plans. Details of the distribution of research by country and by dimensions will be discussed. Conclusion: This first comprehensive examination of research priorities in LMIC cancer plans revealed countries' commitment to incorporate research into their cancer control efforts. The extent of research-related priorities demonstrates promise for transnational research collaborations. Next steps include improved understanding of key factors in achieving successful integration of research and control efforts through cancer control plan implementation.

scholarly journals Understanding the Application and Use of Indigenous Research Methodologies in the Social Sciences by Indigenous and Non-Indigenous Scholars

2021 ◽  
Vol 17 (8) ◽  
Author(s):  
Michelle Pidgeon ◽  
Tasha Riley
Keyword(s):  
Social Sciences ◽  
Indigenous Peoples ◽  
Qualitative Content Analysis ◽  
Indigenous Communities ◽  
Research Process ◽  
Indigenous Research ◽  
Research Methodologies ◽  
Ethical Frameworks ◽  
Indigenous Research Methodologies ◽  
Research Relationships

Indigenous research methodologies articulate how researchers and Aboriginal communities engage in research together. These methodologies are informed by Indigenous cultural and ethical frameworks specific to the Nations with whom the research is being conducted. This study explores how such research relationships were articulated in the dissemination phase of research. We carried out an Indigenous qualitative content analysis of 79 peer-reviewed articles published January 1996 to June 2018, predominantly in the fields of social sciences. Our findings show that most articles were written by Indigenous researchers or a research team composed of Indigenous and non-Indigenous researchers. Such collaborations articulated the principles of Indigenous methodology (IM) much clearer than those authored by non-Indigenous scholars or when partnerships with Indigenous communities were less evident with respect to the principles guiding the research process. The principles of IM that were manifest in these research partnerships were relevance, respect for Indigenous knowledges, responsible relationships, wholism, and Indigenous ethics. The findings of this study will help to guide future researchers who work with Indigenous peoples, especially with respect to the need for a deeper understanding of how such research relationships are sustained over time to bring about  meaningful change for Indigenous peoples and their communities.

scholarly journals A Comparative Analysis of Indigenous Research Guidelines to Inform Genomic Research in Indigenous Communities

2012 ◽  
Vol 3 (1) ◽  
Author(s):  
Nicole K Taniguchi ◽  
Maile Taualii ◽  
Jay Maddock
Keyword(s):  
Best Practices ◽  
Indigenous People ◽  
Indigenous Peoples ◽  
Biological Samples ◽  
Genetic Research ◽  
Indigenous Communities ◽  
Genomic Research ◽  
Indigenous Research ◽  
Research Guidelines ◽  
Indigenous Groups

BACKGROUND: Genetic research has potential benefits for improving health, such as identifying molecular characteristics of a disease, understanding disease prevalence and treatment, and developing treatments tailored to patients based on individual genetic characteristics of their disease. Indigenous people are often targeted for genetic research because genes are easier to study in communities that practice endogamy. Therefore, populations perceived to be more homogenous, such as Indigenous peoples, are ideal for genetic studies. While Indigenous communities remain the focal point of many genomic studies, some result in harm and unethical practice. Unfortunately, the harms of poorly formulated and unethical research involving Indigenous people have created barriers to participation that prevent critical and lifesaving research. These harms have led a number of Indigenous communities to develop guidelines for engaging with researchers to assist in safely bridging the gap between genetic research and Indigenous peoples. SPECIFIC AIMS: The specific aims of this study were: (1) to conduct an international review and comparison of Indigenous research guidelines that highlight topics regarding genetics and use of biological samples and identify commonalities and differences among ethical principles of concern to Indigenous peoples; and (2) develop policy recommendations for Indigenous populations interested in creating formal policies around the use of genetic information and protection of biological samples using data from specific aim 1. METHODS: A comparative analysis was performed to identify best research practices and recommendations for Indigenous groups from four countries: Canada, New Zealand, Australia, and the United States. The analysis examined commonalities in political relationships, which support self-determination among these Indigenous communities to control their data. Current international Indigenous guidelines were analyzed to review processes of how genetic research is conducted and the use of biological samples is handled with Indigenous peoples. RESULTS: Results suggest the need for genetic and genomic research policies for the world’s Indigenous people. Indigenous groups are most vulnerable to research exploitation and harm; therefore, identifying principles that work for Indigenous people will lead to best practices for all populations. CONCLUSIONS: Development and implementation of best practices informed by research guidelines in Canada, New Zealand, Australia, and the U.S. may be helpful to advise Indigenous leaders, policy makers, and researchers to the proper conduction of genetic research within Indigenous communities. Comparative analyses are a useful tool for identifying areas for further work in developing genetic research policy for Indigenous communities. OUTCOME: The outcomes of this analysis are relevant and useful to Indigenous communities and inform the development of community-based genetic research guidelines. The recommendations can be used in designing appropriate policies for future genomic research with Indigenous peoples.

scholarly journals First Nations Children Count: Enveloping Quantitative Research in an Indigenous Envelope

2020 ◽  
Vol 4 (2) ◽  
pp. 135-143 ◽  
Author(s):  
Cindy Blackstock
Keyword(s):  
First Nations ◽  
Indigenous Peoples ◽  
Quantitative Research ◽  
Social Science Research ◽  
Ways Of Knowing ◽  
Science Research ◽  
Indigenous Communities ◽  
Practice Change ◽  
Indigenous Research ◽  
Rich Diversity

Indigenous peoples repeatedly call for disaggregated data describing their experience to inform socio-economic and political policy and practice change (United Nations Permanent Forum on Indigenous Issues, 2003; UNICEF, 2003; Rae & the Sub Group on Indigenous Children and Youth, 2006). Although there has been significant discourse on the destructive historical role of western research with Indigenous communities (RCAP, 1996; Smith, 1999; Schnarch, 2004) and more recently on cultural adaptation of qualitative research methods (Smith, 1999; Bennet, 2004; Kovach, 2007), there has been very little discussion on how to envelope western quantitative social science research within Indigenous ways of knowing and being. This paper begins by outlining the broad goals of Indigenous research before focusing on how quantitative research is used, and represented, in the translation of Indigenous realities in child health and child welfare. Given the rich diversity of Indigenous peoples and their knowledges, this paper is only capable of what respected Indigenous academic Margo Greenwood (2007) would term “touching the mountaintops’ of complex and sacred ideas.

scholarly journals Towards Transformational Research for and with Indigenous Communities: The New British Columbia Indigenous Child Welfare Research Network

2020 ◽  
Vol 4 (2) ◽  
pp. 161-164
Author(s):  
Sandrina de Finney ◽  
Jacquie Green ◽  
Leslie Brown
Keyword(s):  
British Columbia ◽  
Child Welfare ◽  
Resource Sharing ◽  
Service Providers ◽  
Ways Of Knowing ◽  
Indigenous Communities ◽  
Research Network ◽  
Indigenous Research ◽  
Child And Family Services ◽  
Indigenous Child

This article documents the development of the newly launched Indigenous Child Welfare Research Network in British Columbia. This Network is a provincial association of researchers, service providers, community members and policy makers with an interest in using Indigenous research in the transformation of child and family services. Rooted in a vision for healing and the inclusion of diverse voices, Network Initiatives seek to reclaim Indigenous ways of knowing and doing and reposition them at the core of child and family wellness initiatives. The Network provides a space for critical dialogue about Indigenous research, as well as opportunities for researched-related training, knowledge transmission and resource sharing.

Community Participation as an Ethical Principle for Research

2018 ◽  
Vol 11 (2) ◽  
pp. 148-157 ◽  
Author(s):  
Michael Kral
Keyword(s):  
Social Sciences ◽  
Indigenous Peoples ◽  
Collaborative Research ◽  
Indigenous Communities ◽  
Indigenous Research ◽  
Positive Outcomes ◽  
Research Partnerships ◽  
History Of Research ◽  
The Social ◽  
History Of

There is a long history of research with Indigenous peoples by outsiders, and many Indigenous communities have felt exploited. Terms such as drive-by research have been used, as well as expressions such as “we have been researched to death.” Anthropology itself has been accused of spying, and Vine Deloria asked anthropologists to “become productive members” in an Indigenous community “instead of ideological vultures” treating people as objects. A great many Indigenous communities and organizations are now requesting outside researchers to join their communities in a collaborative research partnership, and some have produced ethical principles for research highlighting this participatory relationship. In this article, I discuss some of this history and current direction, giving examples of Indigenous research partnerships and Indigenous research from the inside. Participatory research is extended beyond Indigenous communities to the social sciences, as positive outcomes are being seen across disciplines.

scholarly journals Aligning the “Manifesto for a European Research Network into Problematic Usage of the Internet” with the Diverse Needs of the Professional and Consumer Communities Affected by Problematic Usage of Pornography

2020 ◽  
Vol 17 (10) ◽  
pp. 3462
Author(s):  
Darryl Mead ◽  
Mary Sharpe
Keyword(s):  
Lived Experience ◽  
Research Priorities ◽  
The Body ◽  
Research Network ◽  
General Level ◽  
The Internet ◽  
European Research ◽  
Research Areas ◽  
Action Network ◽  
The Cost

The Manifesto for a European research network into Problematic Usage of the Internet was published in May 2018. It was written from the perspective of the COST Action Network, a programme of the European Cooperation in Science and Technology CA16207 and is expected to have significant influence on research funding priorities over the next decade. The Manifesto identified nine key research priorities to advance understanding in the field. Our analysis shows that while at the most general level it identified problematic usage of pornography (PUP) as a key research priority, it then barely mentioned it again within the body of the report. This paper uses the Manifesto’s framework to suggest research areas into the problematic usage of pornography which are of particular relevance to clinicians and other professionals working in the field who want to develop approaches to assist individuals and target groups affected by PUP. It also looks at potential research opportunities inspired by the lived-experience of users withdrawing from PUP. A large number of opportunities are identified for new work on PUP across all nine key research areas of the Manifesto.

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