Marginalized communities often attract more than their share of research. Too often, this research benefits researchers disproportionately and leaves such communities feeling exploited, misrepresented, and exhausted. The Downtown Eastside (DTES) neighborhood of Vancouver, Canada, has been the site of multiple public health epidemics related to injection drug use as well as the site of much community-led resistance and struggle that has led to the development of cutting-edge harm reduction interventions (e.g., North America’s first supervised injection facility, Insite) and a strong sense of community organization. This background has made the DTES one of the most heavily researched communities in the world. Amidst ongoing experiences of unethical or disrespectful research engagement in the neighborhood, a collaboration between local academic researchers and community representatives developed to explore how we could work together to encourage more respectful, community-responsive research and discourage exploitative or disrespectful research. We developed a series of six weekly workshops called “Research 101.” These workshops brought together approximately 13 representatives from peer-based organizations in the DTES with a variety of experiences with research. Research 101 created space for community members themselves to discuss the pitfalls and potential of research in their neighborhood and to express community expectations for more ethical and respectful research. We summarized workshop discussions in a co-authored “Manifesto for Ethical Research in the Downtown Eastside.” This document serves as a resource to empower community organizations to develop more equitable partnerships with researchers and help researchers ground their work in the principles of locally developed “community ethics.” Manifesto guidelines include increased researcher transparency, community-based ethical review of projects, empowering peer researchers in meaningful roles within a research project, and taking seriously the need for reciprocity in the research exchange. Research 101 was a process for eliciting and presenting a local vision of “community ethics” in a heavily researched neighborhood to guide researchers and empower community organizations. Our ongoing work involves building consensus for these guidelines within the community and communicating these expectations to researchers and ethics offices at local universities. We also describe how our Research 101 process could be replicated in other heavily researched communities.

/pdf/research-101-a-process-for-developing-local-guidelines-for-33zn8xxgzx.pdf

Research 101: A process for developing local guidelines for ethical research in heavily researched communities.

The aim of this research was to determine how the New Right agenda has impacted on the perceptions about the Health Promoting School (HPS) model and its practice. The case study school – a Catholic secondary school, provided opportunity to reflect upon the daily experience of those in a HPS and how these experiences can be constructed. The methods used included running focus groups - students, teachers, administrators, parents and health agencies, and the generation of narratives and commentaries from key stake holders within the school community. This thesis draws on the work of Dewey, Bourdieu and Apple to position its critical deconstruction of one school community’s experience of activity that can be described as about HPS’s. There were four assumptions that underpinned the thesis. The first two arose from the literature that claimed the universality of the HPS model and the second two were derived from the capacity of the school to develop and evolve a setting for health promotion. The potential for this school as a HPS community to deliver on health-related social justice outcomes is yet to be achieved. The commandeering of health promotion terms and concepts by the New Right generates a metaphysical focus that delivers a view of the HPS that is in variance to the original intent.

/pdf/health-promoting-schools-the-right-way-2uh5pdp9ew.pdf

Health promoting schools – the right way

Recent ethical guidelines developed by the Canadian Institutes of Health Research along with the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans stress the importance of Aboriginal community engagement in research. Although these are positive changes meant to ensure respectful and responsive research relationships between communities and researchers, the understanding of 'community' employed by the new guidelines is problematic. In this sense, the guidelines rely on hegemonic understandings of what it is to be an Aboriginal person in Canada, as well as white spatial imaginaries of Aboriginal geographies. In this way, the guidelines codify Aboriginality and its spatiality as that of well-structured, landed, bounded and distinct rural communities. However, the contemporary Metis communities with whom the authors have worked rarely fit into hegemonic imaginaries of Aboriginality and its geographies in Canada. Rather, Metis communities are often institutionally weak, geographically dispersed and sociologically complex. Thus, we argue that the guidelines instantiate a territorialisation of society and space that risks re-marginalising Metis communities.

/pdf/funding-and-ethics-in-metis-community-based-research-the-44yy2qjf2l.pdf

Funding and ethics in Métis community based research: the complications of a contemporary context

‘Aboriginal Health and Healing’ was an imaginative ethnographic research project that combined visual anthropology, participatory-action research, and decolonizing principles (Smith 1999) to explore the challenges of engaging economically and politically marginalized HIV positive individuals into care and treatment. The purpose of the paper is twofold. First, we consider some of the on-going political and methodological challenges in community-based research between impoverished, marginalized community members and academic researchers. As a case study, we focus here on our team’s travel to and participation at a national AIDS conference – at once, our biggest challenge and best achievement – where we were forced to negotiate travel arrangements, drug addictions, safety, health issues, and professional aspirations. Particular focus is given to addiction and drug use, and the impact of conventional narratives of these behaviours within our own work. Second, we draw on theoretical contributions in the field of critical disability studies to reimagine how we might approach studies with inner city residents who are both living with addictions and living with HIV/AIDS as a means to developing research practices that are democratic.

Reimagining Aboriginality, Addictions, and Collaborative Research in Inner City Vancouver, Canada

Chronic disease is the most significant contributor to the mortality gap between Australia’s First Nations people and the overall Australian population. This study explored chronic disease self-management and health literacy in First Nations adults living in remote Queensland. Key findings were poor communication by healthcare providers coupled with limited health literacy abilities of individuals were the major barriers to active engagement with managing chronic disease. Providing a supportive health literacy environment and the provision of appropriate health information delivered in a cultural safe way using clinical yarning, may assist with closing the gap in First Nations people. 

Examining the chronic disease health literacy of first nations Australians: A mixed methods study

This article is dedicated to an in-depth discussion of the theme "community" and the implications the multiple meanings of community hold for the field of qualitative research. This theme surfaced from Waldern's 2003 study entitled Resistance to Research in Vancouver's Downtown Eastside, which dealt with participant resistance to joining research efforts, and deserves the attention of all social researchers. In this article, the politics of the research process are discussed to evaluate and suggest improvements for reflexive methods of inquiry. Determining that the idea of "community research" is a myth, this work is concerned about making qualitative methods more sensitive to social inequality without compromising their rigour. Key Words: Community Research, Resistance, Reflexive Methods, Methodology, Urbanology, Downtown Eastside of Vancouver, and University Relations ********** To me, "community" and "community research" are troublesome words. Though widely spoken, the term "community" lacks a common definition. The word "community" is extremely complex because it is linked to class tensions that are intimately related to struggles over claims to space and social identities: It is therefore politically potent. Reflecting popular values regarding democracy and inclusion, it is a popular word. It is perhaps a word frequently employed by researchers who cherish such values. However, its meaning is quite vague and its use inconsistent. If researchers have not decided on a common definition of "community research" and use the term "community" vaguely, then the question surfaces as to why they refer to "community research." My paper addresses how "community research" reflects a liberal democratic ideology, espoused by the researchers who refer to this mysterious term. I believe that "community research" is a mythology. That is, the term expresses an aspiration rather than actual practice; the hope of facilitating the equalization of social relations and creating improvements to social conditions through social research. I want to talk about the disjuncture between what appear to be "community research" ideals and research practice in this paper. The term "reflexive methods" seems to be the most appropriate for research methods aimed at social action through increased participant-researcher collaboration. Looking at the limits of new or modified methods, I consider that many researchers have idealized and romanticized their work to alter research practices by applying the misnomer "community research." I think that they have done so out of an assumption that the participants have necessarily benefited by virtue of the researchers' intervention. Their assumption is based on a hope rather than a detailed assessment of the methods and outcomes of their work. The key to understanding this fallacy and substantiating my position is investigation into the politics of research and the power relations in research processes and institutions. I draw from my Master's of Arts research project (Waldern, 2003) called Resistance to Research in Vancouver's Downtown Eastside (DTES) in order to study "community research" as a problematic term. My project analyzed selected quotations from interviews that drew out these themes, exploitation of research participants by university-based researchers; ethical considerations of research among poor or otherwise marginalized research participants; and the complications of the term "community." Highlighting the third theme, this article presents the ideas of community, resulting from my interviews with varied DTES research parties. It explains the complexity and inconsistencies of the use of this term by examining the political context of urban expansion, policy shifts, and institutional changes. Using this information, I now propose that community research is a myth. This myth, if perpetuated, is likely to lead to further disappointments and tensions in qualitative research. …

/pdf/community-research-mythology-56f84uchlu.pdf

Community Research Mythology

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Community Research Mythology