Values and Social Epidemiologic Research
In: Rethinking Social Epidemiology, S. 43-65
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In: Rethinking Social Epidemiology, S. 43-65
In: Health & social work: a journal of the National Association of Social Workers, Band 46, Heft 1, S. 22-32
ISSN: 1545-6854
Social workers have been critical in the response to HIV from its inception, in HIV prevention, support, and advocacy for stigmatized populations including gay, bisexual, and other men who have sex with men (GBM). Recently, social workers have been tasked with working in an era of increasingly biomedicalized HIV prevention, including pre-exposure prophylaxis (PrEP), a safe and highly effective new prevention technology. However, disparities in PrEP access due to structural barriers, including lack of health insurance coverage, and complex decision-making pathways and processes of engagement present substantial challenges for PrEP implementation. Ensuring equitable access to resources and supporting informed decision making are paramount to social work values, yet scant published literature has considered PrEP social work intervention. This article draws on qualitative data from 29 GBM respondents to highlight gaps in PrEP decision-making support and access that may be amenable to social work intervention. Authors describe opportunities for individual, interpersonal, organizational, and structural social work interventions to address multilevel gaps in PrEP implementation. Findings illuminate the complexity of individual experiences and social discourses regarding PrEP and their impact on GBM and raise important issues for social workers to consider in working with GBM clients, service providers, and administrators.
In: Body & society, Band 22, Heft 2, S. 82-107
ISSN: 1460-3632
The global response to managing the spread of HIV has recently undergone a significant shift with the advent of 'treatment as prevention', a strategy which presumes that scaling-up testing and treatment for people living with HIV will produce a broader preventative benefit. Treatment as prevention includes an array of diagnostic, technological and policy developments that are creating new understandings of how HIV circulates in bodies and spaces. Drawing on the work of Michel Foucault, we contextualize these developments by linking them to systems of governance and discursive subjectivation. The goal of this article is to problematize the growing importance of viral suppression in the management of HIV and the use of related surveillance technologies. For people living with HIV, we demonstrate how treatment-as-prevention's emphasis on individual and collective viral load is transforming the performative dimensions of embodied risk, affect, subjectivity and sex.
This paper explores the expulsion of an activist from the 2010 International AIDS conference and juxtaposes it with Bill Clinton's plenary talk from the same conference. These two events dramatize the complex and competing discourses circulating within the global AIDS movement. In particular, they illustrate the ways in which governments, NGOs, Big Pharma, medical researchers, and funders constitute a global bureaucratic matrix that promotes new 'truths' about the epidemic. Namely, that the battle will be fought and won through programmatic (economic, biomedical, technological, and pharmacological) interventions. These new 'truths' and affiliated practises render dissent and advocacy a threat to this programmatic rationality, and serve to silence the global AIDS movement's earlier calls for critical resistance and action. Drawing on Foucauldian "biopower" the paper offers a re-articulation of international HIV programs and institutions, and reads the techniques of HIV and AIDS governance, polemically, as a form of "biofascism."
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In: Policing and society: an international journal of research and policy, Band 34, Heft 4, S. 290-304
ISSN: 1477-2728
In: Substance use & misuse: an international interdisciplinary forum, Band 55, Heft 8, S. 1378-1381
ISSN: 1532-2491
In: Journal of empirical research on human research ethics: JERHRE ; an international journal, Band 7, Heft 1, S. 17-27
ISSN: 1556-2654
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.
In: http://www.health-policy-systems.com/content/10/1/36
Abstract 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.
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In: Journal of the International AIDS Society, Band 21, Heft 11
ISSN: 1758-2652
AbstractIntroductionNotwithstanding the efficacy of oral pre‐exposure prophylaxis (PrEP) in clinical trials, a number of obstacles exist to achieving population‐level impact among gay, bisexual and other men who have sex with men (GBM). However, few studies have explored the subjective experiences of GBM PrEP users and non‐users in the community, outside of clinical trials. The objectives of this study were to explore GBM's experiences of considering, accessing and using (or not using) PrEP, and to understand emerging sexual health, social and community issues among GBM in the PrEP era.MethodsFrom October 2015 to March 2016, we purposively sampled PrEP‐naïve and PrEP‐experienced GBM from community organizations and health centres in Toronto, Canada. In‐depth, 45‐ to 90‐minute semi‐structured interviews explored PrEP perspectives and decision‐making, access, initiation, use over time, sexual practices and psychosocial considerations. Interviews were recorded, transcribed verbatim, uploaded into NVIVO, reviewed using thematic analysis and then contrasted with the PrEP cascade.ResultsParticipants included PrEP users (n = 15) and non‐users (n = 14) (mean age = 36.7 years; SD = 8.2), largely gay‐identified (86.2%), cisgender male (89.7%) and white (79.3%). Themes indicate not only correspondences, but also limitations of the PrEP cascade by complicating a user/non‐user binary and challenging the unilateral presupposition that HIV risk perception leads to PrEP acceptance. Findings further call into question assumptions of a linear stage progression and retention in care as a universal endpoint, instead revealing alternate trajectories of seasonal or intermittent PrEP use and, for some, an end goal of terminating PrEP. GBM's narratives also revealed potent psychological/affective experiences of untethering sex from HIV anxiety; multifaceted PrEP stigma; and challenges to sexual norms and practices that complicate existing behavioural prevention strategies and sexual and social relationships.ConclusionsAn expanded PrEP cascade should consider alternate trajectories of use based on dynamic relationships and behavioural risks that may call for seasonal or intermittent use; systemic barriers in access to and sustaining PrEP; and multiple end goals including PrEP maintenance and discontinuation. Incorporating GBM's lived experiences, evolving preferences, and psychosocial and community‐level challenges into PrEP implementation models, rather than a circumscribed biomedical approach, may more effectively support HIV prevention and GBM's broader sexual and psychological health.
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 ...
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In: Critical policy studies, Band 18, Heft 2, S. 227-246
ISSN: 1946-018X
In: Journal of empirical research on human research ethics: JERHRE ; an international journal, Band 5, Heft 2, S. 35-46
ISSN: 1556-2654
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.
Sexual health education in schools is a controversial topic. In 2015 an updated version of the sex education program was introduced to schools in the Province of Ontario, Canada. The curriculum received strong criticism from some parents and lobby groups. Similar objections led to the Ontario Liberal government withdrawing the previous sex education program update in 2010. Public debates about the appropriateness of the new curriculum are primarily concerned with the extent to which parents were consulted. Absent from these discussions are the opinions of the curriculum's target group: students. What do young people have to say about their sexual health education, and how can this information be used to provide more effective programs in schools? In this article we draw on the findings of the Toronto Teen Survey (TTS) (N = 1,216) to discuss youth responses to questions about their experience with sexual health education and the relevance of this information for school-based sexual health education (SBSE). Considering that TTS youth identified schools as their primary source of sexual health education, the survey findings have value for SBSE. In discussing the TTS data in the context of the updated Ontario sexual health curriculum, we provide a youth perspective on the revised sexual health education program that was implemented in the fall of 2015.
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In: The British journal of social work, Band 51, Heft 3, S. 888-906
ISSN: 1468-263X
Abstract
Participatory research, or the practice of involving 'peers' with lived experience, has become popular in social work. Peer engagement is lauded for: 'democratising' the research process; providing 'capacity building' and facilitating opportunities to co-produce knowledge. Yet, these claims are rarely evaluated by empirical investigations into the socio-material work conditions of peer researchers. Here we present findings of a study that examined the experiences of peer researchers, focusing on payment inequities and social workers' roles in advocating for economic justice. Together with peer research assistants, we conducted a participatory constructivist grounded theory study, interviewing peers (total n = 34) who were compensated to work on studies focused on the following: racialised communities, communities of people who use drugs, consumer/psychiatric survivor/ex-patient and mad communities and trans/non-binary communities. Our findings highlight divergent compensation practices in peer research work. Whilst some peers were satisfied with their treatment on research teams and payment received, others discussed challenges associated with precarious short-term casual work and managing formal income alongside state social assistance such as disability support. We conclude that in some cases, the peer role is characterised by precarious working conditions which compound rather than challenge injustice within the research enterprise, and we discuss implications for social work.
In: Journal of racial and ethnic health disparities: an official journal of the Cobb-NMA Health Institute
ISSN: 2196-8837
Abstract
Background
Amid persistent disparities in Covid-19 vaccination and burgeoning research on vaccine hesitancy (VH), we conducted a scoping review to identify multilevel determinants of Covid-19 VH and under-vaccination among marginalized populations in the U.S. and Canada.
Methods
Using the scoping review methodology developed by the Joanna Briggs Institute, we designed a search string and explored 7 databases to identify peer-reviewed articles published from January 1, 2020–October 25, 2022. We combine frequency analysis and narrative synthesis to describe factors influencing Covid-19 VH and under-vaccination among marginalized populations.
Results
The search captured 11,374 non-duplicated records, scoped to 103 peer-reviewed articles. Among 14 marginalized populations identified, African American/Black, Latinx, LGBTQ+, American Indian/Indigenous, people with disabilities, and justice-involved people were the predominant focus. Thirty-two factors emerged as influencing Covid-19 VH, with structural racism/stigma and institutional mistrust (structural)(n = 71) most prevalent, followed by vaccine safety (vaccine-specific)(n = 62), side effects (vaccine-specific)(n = 50), trust in individual healthcare provider (social/community)(n = 38), and perceived risk of infection (individual)(n = 33). Structural factors predominated across populations, including structural racism/stigma and institutional mistrust, barriers to Covid-19 vaccine access due to limited supply/availability, distance/lack of transportation, no/low paid sick days, low internet/digital technology access, and lack of culturally- and linguistically-appropriate information.
Discussion
We identified multilevel and complex drivers of Covid-19 under-vaccination among marginalized populations. Distinguishing vaccine-specific, individual, and social/community factors that may fuel decisional ambivalence, more appropriately defined as VH, from structural racism/structural stigma and systemic/institutional barriers to vaccination access may better support evidence-informed interventions to promote equity in access to vaccines and informed decision-making among marginalized populations.