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.
The Greater Involvement of People Living with HIV/AIDS Principle (GIPA) has been a core commitment for many people involved in the community-based HIV/AIDS movement. GIPA refers to the inclusion of people living with HIV/AIDS in service delivery and decision-making processes that affect their lives. Despite its central importance to the movement, it has received little attention in the academic literature. Drawing on focus group discussions among staff members and volunteers of AIDS service organizations, activists, and community members, we explore challenges to the implementation of the GIPA principle in community-based HIV/AIDS organizations in Ontario, Canada. Our findings reveal ways in which implementing GIPA has become more complicated over recent years. Challenges relating to health, stigma and disclosure, evolving HIV/AIDS organizations, and GIPA-related tensions are identified. This paper considers our findings in light of previous research, and suggests some implications for practice.
The purpose of this study was to understand the culture, values, skills and activities of staff involved in education and prevention activities in community-based AIDS Service Organizations (ASOs) in Ontario, Canada, and to understand the role of evaluation research in their prevention programming. In this qualitative study, 33 staff members from 11 ASOs participated in semi-structured interviews that were analyzed using the grounded theory approach. ASO staff experience tension between a historical grassroots organizational culture characterized by responsiveness and relevance and a more recent culture of professionalization. Target populations have changed from being primarily gay men to an almost unlimited variety of communities. Program emphasis has shifted from education and knowledge dissemination to a broadly based mandate of health promotion, community development, and harm reduction. Integration of evidence of effectiveness, social-behavioral theory, or systematic evaluation is uncommon. Understanding these points of tension is important for the nursing profession when it is engaged with ASOs in programming or evaluation research.
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.
To investigate barriers and facilitating factors for ASO engagement in CBR.
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.
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.
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.
Community-based organizations (CBOs) are important stakeholders in health systems and are increasingly called upon to use research evidence to inform their advocacy, program planning, and service delivery. To better support CBOs to find and use research evidence, we sought to assess the capacity of CBOs in the HIV/AIDS sector to acquire, assess, adapt, and apply research evidence in their work.
We invited executive directors of HIV/AIDS CBOs in Ontario, Canada (n = 51) to complete the Canadian Health Services Research Foundation's "Is Research Working for You?" survey.
Based on responses from 25 organizations that collectively provide services to approximately 32,000 clients per year with 290 full-time equivalent staff, we found organizational capacity to acquire, assess, adapt, and apply research evidence to be low. CBO strengths include supporting a culture that rewards flexibility and quality improvement, exchanging information within their organization, and ensuring that their decision-making processes have a place for research. However, CBO Executive Directors indicated that they lacked the skills, time, resources, incentives, and links with experts to acquire research, assess its quality and reliability, and summarize it in a user-friendly way.
Given the limited capacity to find and use research evidence, we recommend a capacity-building strategy for HIV/AIDS CBOs that focuses on providing the tools, resources, and skills needed to more consistently acquire, assess, adapt, and apply research evidence. Such a strategy may be appropriate in other sectors and jurisdictions as well given that CBO Executive Directors in the HIV/AIDS sector in Ontario report low capacity despite being in the enviable position of having stable government infrastructure in place to support them, benefiting from long-standing investment in capacity building, and being part of an active provincial network. CBOs in other sectors and jurisdictions that have fewer supports may have comparable or lower capacity. Future research should examine a larger sample of CBO Executive Directors from a range of sectors and jurisdictions.
Studies of HIV-related risk in trans (transgender, transsexual, or transitioned) people have most often involved urban convenience samples of those on the male-to-female (MTF) spectrum. Studies have detected high prevalences of HIV-related risk behaviours, self-reported HIV, and HIV seropositivity.
The Trans PULSE Project conducted a multi-mode survey using respondent-driven sampling to recruit 433 trans people in Ontario, Canada. Weighted estimates were calculated for HIV-related risk behaviours, HIV testing and self-reported HIV, including subgroup estimates for gender spectrum and ethno-racial groups.
Trans people in Ontario report a wide range of sexual behaviours with a full range of partner types. High proportions - 25% of female-to-male (FTM) and 51% of MTF individuals - had not had a sex partner within the past year. Of MTFs, 19% had a past-year high-risk sexual experience, versus 7% of FTMs. The largest behavioural contributors to HIV risk were sexual behaviours some may assume trans people do not engage in: unprotected receptive genital sex for FTMs and insertive genital sex for MTFs. Overall, 46% had never been tested for HIV; lifetime testing was highest in Aboriginal trans people and lowest among non-Aboriginal racialized people. Approximately 15% of both FTM and MTF participants had engaged in sex work or exchange sex and about 2% currently work in the sex trade. Self-report of HIV prevalence was 10 times the estimated baseline prevalence for Ontario. However, given wide confidence intervals and the high proportion of trans people who had never been tested for HIV, estimating the actual prevalence was not possible.
Results suggest potentially higher than baseline levels of HIV; however low testing rates were observed and self-reported prevalences likely underestimate seroprevalence. Explicit inclusion of trans people in epidemiological surveillance statistics would provide much-needed information on incidence and prevalence. Given the wide range of sexual behaviours and partner types reported, HIV prevention programs and materials should not make assumptions regarding types of behaviours trans people do or do not engage in.
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At the time of the writing, Nooshin Khobzi Rotondi was with the Health Systems and Health Equity Research Group, Social and Epidemiological Research Department, Centre for Addiction and Mental Health, Toronto, Ontario. Greta R. Bauer is with the Department of Epidemiology and Biostatistics, The University of Western Ontario, London, Ontario. At the time of the study, Kyle Scanlon was with the 519 Church Street Community Centre, Toronto. Matthias Kaay is with the Addictions Program, Centre for Addiction and Mental Health. Robb Travers is with the Department of Psychology, Wilfrid Laurier University, Waterloo, Ontario. Anna Travers is with Rainbow Health Ontario, Toronto.
We examined the extent of nonprescribed hormone use and self-performed surgeries among transgender or transsexual (trans) people in Ontario, Canada.
We present original survey research from the Trans PULSE Project. A total of 433 participants were recruited from 2009 to 2010 through respondent-driven sampling. We used a case series design to characterize those currently taking nonprescribed hormones and participants who had ever self-performed sex-reassignment surgeries.
An estimated 43.0% (95% confidence interval = 34.9, 51.5) of trans Ontarians were currently using hormones; of these, a quarter had ever obtained hormones from nonmedical sources (e.g., friend or relative, street or strangers, Internet pharmacy, herbals or supplements). Fourteen participants (6.4%; 95% confidence interval = 0.8, 9.0) reported currently taking nonprescribed hormones. Five indicated having performed or attempted surgical procedures on themselves (orchiectomy or mastectomy).
Past negative experiences with providers, along with limited financial resources and a lack of access to transition-related services, may contribute to nonprescribed hormone use and self-performed surgeries. Promoting training initiatives for health care providers and jurisdictional support for more accessible services may help to address trans people's specific needs.
Erratum In: Am J Public Health. 2013 Nov;103(11):e11
This qualitative study identifies the types of professional expertise that physicians are seen to possess in clinical encounters from the perspective of people living with HIV/AIDS (PLWHA). Respondents looked to their physicians for expert knowledge in 3 key areas: medical/clinical; legal/statutory; and ethical/moral. Physicians were seen to be authorities in each of these areas and their judgments, though not always agreed with, were taken seriously and influenced the health care decisions made by PLWHA. The authority that comes with professional expertise in each of the areas identified was experienced both positively and negatively by PLWHA. Understanding the expectations of patients in the medical encounter can assist physicians in providing optimal care in the management of HIV/AIDS.