Adrian Guta

Ethical Dilemmas in Community-Based Participatory Research: Recommendations for Institutional Review Boards

National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of “knowledge production” is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework more suitable for CBPR, and we propose alternative questions and procedures that may be utilized when assessing the ethical appropriateness of CBPR.

Governing through community allegiance: a qualitative examination of peer research in community-based participatory research

The disappointing results of many public health interventions have been attributed in part to the lack of meaningful community engagement in the planning, implementation, and evaluation of these initiatives. Community-based participatory research (CBPR) has emerged as an alternative research paradigm that directly involves community members in all aspects of the research process. Their involvement is often said to be an empowering experience that builds capacity. In this paper, we interrogate these assumptions, drawing on interview data from a qualitative study investigating the experiences of 18 peer researchers (PRs) recruited from nine CBPR studies in Toronto, Canada. These individuals brought to their respective projects experience of homelessness, living with HIV, being an immigrant or refugee, identifying as transgender, and of having a mental illness. The reflections of PRs are compared to those of other research team members collected in separate focus groups. Findings from these interviews are discussed with an attention to Foucault’s concept of ‘governmentality’, and compared against popular community-based research principles developed by Israel and colleagues. While PRs spoke about participating in CBPR initiatives to share their experience and improve conditions for their communities, these emancipatory goals were often subsumed within corporatist research environments that limited participation. Overall, this study offers a much-needed theoretical engagement with this popular research approach and raises critical questions about the limits of community engagement in collaborative public health research.

The greater involvement of people living with AIDS principle: theory versus practice in Ontario's HIV/AIDS community-based research sector

Abstract Drawing on the Greater Involvement of People with HIV/AIDS (GIPA) principle, the HIV/AIDS movement began to “democratize” research in Canada in the mid-1990s. To date, there is little evidence about the success of the community-based research (CBR) movement in relation to the implementation of GIPA. We draw on findings from a larger study examining barriers and facilitating factors in relation to HIV-related CBR in Ontario, Canada. An online survey was completed by 39 senior managers in Ontario AIDS service organizations (ASOs). Twenty-five in-depth, semi-structured interviews were then conducted to further explore the survey findings. Survey respondents reported that, compared to researchers and frontline service providers, people living with HIV/AIDS (PLWHA) tended to be the least involved in all stages (input, process and outcome) of CBR projects. AIDS service organizations with a mandate that included serving rural and urban communities reported even lower levels of PLWHA involvement in CBR. Qualitative data reveal complex barriers that make meaningful PLWHA engagement in CBR difficult, including: HIV-related stigma; health-related challenges; “credentialism”; lack of capacity to engage in research; other issues taking priority; and mistrust of researchers. Facilitating factors included valuing lived experience; training and mentoring opportunities; financial compensation; trust building; and accommodating PLWHAs needs. While there is strong support for the GIPA principles in theory, practice lags far behind.

Survey Design From the Ground Up: Collaboratively Creating the Toronto Teen Survey

The Toronto Teen Survey is a community-based participatory research study whose aim is to gather information on the accessibility and relevance of sexual health services for diverse groups of urban youth (13 to 17 years of age). This information will be used to develop a proactive, citywide strategy to improve sexual health outcomes for Toronto adolescents. In this article, the authors focus on the processes of collaboratively developing a survey tool with youth, academics, and community stakeholders. An overview of the project and examples from the design stage are provided. In addition, recommendations are given toward developing best practices when working with young people on research and survey design.

Community-based organizations in the health sector: A scoping review

Community-based organizations are important health system stakeholders as they provide numerous, often highly valued programs and services to the members of their community. However, community-based organizations are described using diverse terminology and concepts from across a range of disciplines. To better understand the literature related to community-based organizations in the health sector (i.e., those working in health systems or more broadly to address population or public health issues), we conducted a scoping review by using an iterative process to identify existing literature, conceptually map it, and identify gaps and areas for future inquiry.We searched 18 databases and conducted citation searches using 15 articles to identify relevant literature. All search results were reviewed in duplicate and were included if they addressed the key characteristics of community-based organizations or networks of community-based organizations. We then coded all included articles based on the country focus, type of literature, source of literature, academic discipline, disease sector, terminology used to describe organizations and topics discussed.We identified 186 articles addressing topics related to the key characteristics of community-based organizations and/or networks of community-based organizations. The literature is largely focused on high-income countries and on mental health and addictions, HIV/AIDS or general/unspecified populations. A large number of different terms have been used in the literature to describe community-based organizations and the literature addresses a range of topics about them (mandate, structure, revenue sources and type and skills or skill mix of staff), the involvement of community members in organizations, how organizations contribute to community organizing and development and how they function in networks with each other and with government (e.g., in policy networks).Given the range of terms used to describe community-based organizations, this scoping review can be used to further map their meanings/definitions to develop a more comprehensive typology and understanding of community-based organizations. This information can be used in further investigations about the ways in which community-based organizations can be engaged in health system decision-making and the mechanisms available for facilitating or supporting their engagement.

Community-based research in AIDS-service organizations: what helps and what doesn't?

Abstract Background. Community-based research (CBR) approaches have become commonplace in many North American HIV communities. In many large urban centers, AIDS-service organizations (ASOs) have become active research hubs, advocating for research dollars in community settings. While ASOs have historically integrated local knowledge into their prevention, care and advocacy initiatives, many are now initiating or collaborating in research which addresses emerging issues encountered in practice with clients. Objectives. To investigate barriers and facilitating factors for ASO engagement in CBR. Methods. We conducted a survey (n=39) and one-on-one semi-structured telephone interviews (n=25) with executive directors and CBR coordinators from ASOs in Ontario, Canada. The survey queried four major areas of interest (organizational demographics, ASO CBR activities, potential barriers and facilitators for CBR engagement, and what roles stakeholders play in CBR initiatives). The interviews focused on exploring these issues in greater depth as well as understanding barriers and facilitating factors to people living with HIV/AIDS engaging in CBR. Results. ASOs in Ontario are moderately supportive of CBR in their organizations. However, our survey and one-on-one interviews indicate that funding and organizational resources are both important barriers and facilitators to ASO involvement in CBR projects. Attaining access to research ethics boards and concerns that CBR results will not be acted upon also emerged as barriers to CBR, particularly once funds and organizational resources have been attained. Initiatives designed to enhance the skills of research team members emerged as an another important facilitator. Conclusion. Increasing emphasis from program funders on more rigorous evaluation and accountability, coupled with pull from increasingly empowered communities demanding much more active roles in setting research agendas, means that CBR is likely here to stay. Attending to barriers and facilitators will help with enhanced ASO engagement in CBR.

Are We Asking the Right Questions? A Review of Canadian REB Practices in Relation to Community-Based Participatory Research:

Access barriers to effective ethics review continue to be a significant challenge for researchers and community-based organizations undertaking community-based participatory research (CBPR). This article reports on findings from a content analysis of select (Behavioural, Biomedical, Social Sciences, Humanities) research ethics boards (REBs) in the Canadian research context (n = 86). Existing ethics review documentation was evaluated using 30 CBPR related criteria for their sensitivity to relevant approaches, processes, and outcomes. A linear regression was conducted to determine whether specific organizational characteristics have an impact on the CBPR sensitivity: (1) region of Canada, (2) type of institution (university or a healthcare organization), (3) primary institutional language (English or French) and (4) national ranking with respect to research intensiveness. While only research intensiveness proved statistically significant (p = .001), we recognize REB protocol forms may not actually reflect how CBPR is reviewed. Despite using a single guiding ethical framework, REBs across Canada employ a variety of techniques to review research studies. We report on these differences and varying levels of sensitivity to CBPR. Finally, we highlight best practices and make recommendations for integrating CBPR principles into existing ethics review.

Walking Along Beside the Researcher: how Canadian Rebs/irbs are Responding to the Needs of Community-Based Participatory Research

Research ethics boards and institutional review boards (REBs/IRBs) have been criticized for relying on conceptions of research that privilege biomedical, clinical, and experimental designs, and for penalizing research that deviates from this model. Studies that use a community-based participatory research (CBPR) design have been identified as particularly challenging to navigate through existing ethics review frameworks. However, the voices of REB/IRB members and staff have been largely absent in this debate. The objective of this article is to explore the perspectives of members of Canadian university-based REBs/IRBs regarding their capacity to review CBPR protocols. We present findings from interviews with 24 Canadian REB/IRB members, staff, and other key informants. Participants were asked to describe and contrast their experiences reviewing studies using CBPR and mainstream approaches. Contrary to the perception that REBs/IRBs are inflexible and unresponsive, participants described their attempts to dialogue and negotiate with researchers and to provide guidance. Overall, these Canadian REBs/IRBs demonstrated a more complex understanding of CBPR than is typically characterized in the literature. Finally, we situate our findings within literature on relational ethics and explore the possibility of researchers and REBs/IRBs working collaboratively to find solutions to unique ethical tensions in CBPR.

Living with addiction: The perspectives of drug using and non-using individuals about sharing space in a hospital setting

Hospitals seem to be places where harm reduction approaches could have great benefit but few have responded to the needs of people who use drugs. Drawing on recent theoretical contributions to harm reduction from health geography, we examine how the implementation of harm reduction is shaped by space and contested understandings of place and health. We examine how drug use and harm reduction approaches pose challenges and offer opportunities in hospital-based care using interview data from people living with HIV and who were or had recently been admitted to a hospital with an innovative harm reduction policy. Our data reveal the contested spatial arrangements (and the related practices and corporeal relations) that occur due to the discordance between harm reduction and hospital regulatory policy. Rather than de-stigmatising drug use at Casey House Hospital, the adoption of the harm reduction policy sparked inter-client conflict, reproduced dominant discourses about health and drug users, and highlights the challenges of sharing space when drug use is involved. The hospital setting produces particular ways of being for people who use and those who do not use drugs and the demarcation of space in a drug using context. Moving forward, harm reduction practice and research needs to consider more than just interactions between drug users and healthcare providers, or the role of administrative policies; it needs to position ethics at the forefront of understanding the collisions between people, drug use, place, and space. We raise questions about the relationship between subjectivity and spatial arrangements in mediating the success of harm reduction.

Treatment adherence redefined: a critical analysis of technotherapeutics

GAGNON M, JACOB JD and GUTA A. Nursing Inquiry 2013; 20: 60–70 Treatment adherence redefined: a critical analysis of technotherapeutics Treatment adherence issues in the context of chronic illnesses have become an important concern worldwide and a top priority in the field of health-care. The development of devices that will allow healthcare providers to track treatment adherence and monitor physiological parameters with exact precision raises important questions and concerns. The aim of this study is to interrogate the use of these new technological devices which allow for previously unavailable data to be recorded on an ongoing basis and transmitted via a tiny microchip inserted into the body. Drawing on the work of Michel Foucault, we analyze how this anatomo-political and bio-political instrument serves to discipline chronically ill individuals and govern the health of entire populations who suffer from chronic conditions. To support our analysis, this article comprises three sections. First, we provide an overview of treatment adherence and technotherapeutics. Then, we explain how technotherapeutics concern the government of bodies and conducts at the individual level and population level more generally. Lastly, we provide an example of how this analysis can be connected to routine nursing practice in the field of HIV.