Zack Marshall

Peering into the literature: A systematic review of the roles of people who inject drugs in harm reduction initiatives

BACKGROUND People who inject drugs have been central to the development of harm reduction initiatives. Referred to as peer workers, peer helpers, or natural helpers, people with lived experience of drug use leverage their personal knowledge and skills to deliver harm reduction services. Addressing a gap in the literature, this systematic review focuses on the roles of people who inject drugs in harm reduction initiatives, how programs are organized, and obstacles and facilitators to engaging people with lived experience in harm reduction programs, in order to inform practice and future research. METHODS This systematic review included searches for both peer reviewed and gray literature. All titles and abstracts were screened by two reviewers. A structured data extraction tool was developed and utilized to systematically code information concerning peer roles and participation, program characteristics, obstacles, and facilitators. RESULTS On the basis of specific inclusion criteria 164 documents were selected, with 127 peer-reviewed and 37 gray literature references. Data extraction identified key harm reduction program characteristics and forms of participation including 36 peer roles grouped into five categories, as well as obstacles and facilitators at systemic, organizational, and individual levels. CONCLUSIONS Research on harm reduction programs that involve people with lived experience can help us better understand these approaches and demonstrate their value. Current evidence provides good descriptive content but the field lacks agreed-upon approaches to documenting the ways peer workers contribute to harm reduction initiatives. Implications and ten strategies to better support peer involvement in harm reduction programs are identified.

Seeking Safer Sexual Spaces: Queer and Trans Young People Labeled with Intellectual Disabilities and the Paradoxical Risks of Restriction

Young lesbian, gay, bisexual, and transgender (LGBT) people labeled with intellectual disabilities have unique sexual health needs that are not being met. Denial by others of their right to pleasure and the exercise of heightened external control over their sexuality are commonplace. Current research indicates that these youth are at heightened risk for compromised sexual health. This study aimed to explore the ways in which social and environmental conditions influence vulnerability to adverse sexual health outcomes for this population. We used a community-based research approach to conduct qualitative interviews and focus groups with 10 young LGBT people (aged 17–26) labeled with intellectual disabilities. Participants reported multiple limitations on their autonomy that resulted in having sex in places where they did not feel comfortable and were unlikely to practice safer sex. Attempts by authority figures to protect youth through limits on their autonomy may be unintentionally leading to negative sexual health outcomes.

Navigating Risks and Professional Roles: Research with Lesbian, Gay, Bisexual, Trans, and Queer Young People with Intellectual Disabilities:

We examine ethical issues that emerged during a community-based participatory research (CBPR) study in Toronto, Canada, exploring sexual health attitudes and practices among lesbian, gay, bisexual, trans, queer, and questioning (LGBTQ) young people (ages 17–26) labeled with intellectual disabilities. These ethical concerns included: (1) managing the risk of coercion, (2) consent to participate in the study, (3) issues of confidentiality and disclosure, (4) balancing beneficence with self-determination, and (5) role conflict for researcher-practitioners who participate in CBPR projects. Incorporating critical disability perspectives and a heightened awareness of professional role conflict into CBPR practices has the potential to foster development of more inclusive and accessible sexual health initiatives and research environments.

The ethics of community-based research with people who use drugs: results of a scoping review

BackgroundDrug user networks and community-based organizations advocate for greater, meaningful involvement of people with lived experience of drug use in research, programs and services, and policy initiatives. Community-based approaches to research provide an opportunity to engage people who use drugs in all stages of the research process. Conducting community-based participatory research (CBPR) with people who use drugs has its own ethical challenges that are not necessarily acknowledged or supported by institutional ethics review boards. We conducted a scoping review to identify ethical issues in CBPR with people who use drugs that were documented in peer-reviewed and grey literature.MethodsThe search strategy focused on three areas; community-based research, ethical issues, and drug use. Searches of five academic databases were conducted in addition to a grey literature search, hand-searching, and consultation with organizational partners and key stakeholders. Peer reviewed literature and community reports published in English between 1985 and 2013 were included, with initial screening conducted by two reviewers.ResultsThe search strategy produced a total of 874 references. Twenty-five references met the inclusion criteria and were included in our thematic analysis. Five areas were identified as important to the ethics of CBPR with people who use drugs: 1) participant compensation, 2) drug user perspectives on CBPR, 3) peer recruitment and representation in CBPR, 4) capacity building, and 5) participation and inclusion in CBPR.ConclusionsWe critically discuss implications of the emerging research in this field and provide suggestions for future research and practice.

Reporting of sex and gender in randomized controlled trials in Canada: a cross-sectional methods study

BackgroundAccurate reporting on sex and gender in health research is integral to ensuring that health interventions are safe and effective. In Canada and internationally, governments, research organizations, journal editors, and health agencies have called for more inclusive research, provision of sex-disaggregated data, and the integration of sex and gender analysis throughout the research process. Sex and gender analysis is generally defined as an approach for considering how and why different subpopulations (e.g., of diverse genders, ages, and social locations) may experience health conditions and interventions in different or similar ways.The objective of this study was to assess the extent and nature of reporting about sex and/or gender, including whether sex and gender analysis (SGA) was carried out in a sample of Canadian randomized controlled trials (RCTs) with human participants.MethodsWe searched MEDLINE from 01 January 2013 to 23 July 2014 using a validated filter for identification of RCTs, combined with terms related to Canada. Two reviewers screened the search results to identify the first 100 RCTs that were either identified in the trial publication as funded by a Canadian organization or which had a first or last author based in Canada. Data were independently extracted by two people from 10% of the RCTs during an initial training period; once agreement was reached on this sample, the remainder of the data extraction was completed by one person and verified by a second.ResultsThe search yielded 1433 records. We screened 256 records to identify 100 RCTs which met our eligibility criteria. The median sample size of the RCTs was 107 participants (range 12–6085). While 98% of studies described the demographic composition of their participants by sex, only 6% conducted a subgroup analysis across sex and 4% reported sex-disaggregated data. No article defined “sex” and/or “gender.” No publication carried out a comprehensive sex and gender analysis.ConclusionsFindings highlight poor uptake of sex and gender considerations in the Canadian RCT context and underscore the need for better articulated guidance on sex and gender analysis to improve reporting of evidence, inform policy development, and guide future research.

HIV Point-of-Care Testing in Canadian Settings: A Scoping Review

Background HIV point-of-care testing (POCT) was approved for use in Canada in 2005 and provides important public health benefits by providing rapid screening results rather than sending a blood sample to a laboratory and waiting on test results. Access to test results soon after testing (or during the same visit) is believed to increase the likelihood that individuals will receive their results and improve access to confirmatory testing and linkages to care. This paper reviews the literature on the utilization of HIV POCT across Canadian provinces. Methods We searched OVID Medline, Embase, EBM Reviews, PsycINFO, CINAHL, and 20 electronic grey literature databases. All empirical studies investigating HIV POCT programs in Canada published in French or English were included. Results Searches of academic databases identified a total of 6,091 records. After removing duplicates and screening for eligibility, 27 records were included. Ten studies are peer-reviewed articles, and 17 are grey literature reports. HIV POCT in Canada is both feasible and accepted by Canadians. It is preferred to conventional HIV testing (ranging from 81.1 to 97%), and users are highly satisfied with the testing process (ranging between 96 and 100%). Conclusion The majority of studies demonstrate that HIV POCT is feasible, preferred, and accepted by diverse populations in Canada. Losses to follow-up and linkage rates are also good. However, more research is needed to understand how best to scale up HIV POCT in contexts that currently have very limited or no access to testing.

Harnessing the Power of Community-Based Participatory Research: Examining Knowledge, Action, and Consciousness in the PROUD Study

Community-based participatory research (CBPR) is an approach to research that recognizes the specific knowledge and abilities that individuals from diverse backgrounds bring to the generation of new knowledge for the purpose of social action aimed at improving public health and health equity. In this article, the authors apply Gaventa and Cornwalls dimensions of participatory research to the analysis of 12 semistructured interviews with members of our Community Advisory Committee for the Participatory Research in Ottawa: Understanding Drugs (PROUD) study. This process-to-outcomes framework may help projects more systematically explore their experiences in relation to common CBPR principles and lead to greater conceptual clarity.

Tobacco control recommendations identified by LGBT Atlantans in a community-based participatory research project.

Background: Lesbian, gay, bisexual, and transgender (LGBT) people are increasingly aware that disproportionately high smoking rates severely impact the health of their communities. Motivated to make a change, a group of LGBT community members, policymakers, and researchers from Atlanta carried out a community-based participatory research (CBPR) project.Objectives: This formative research study sought to identify recommendations for culturally relevant smoking prevention and cessation interventions that could improve the health of Atlanta’s LGBT communities.Methods: Data presented here come from four focus groups with 36 participants and a community meeting with 30 participants.Results: Among study participants, the most favored interventions were providing LGBT-specific cessation programs, raising awareness about LGBT smoking rates, and getting community venues to go smoke-free. Participants also suggested providing reduced-cost cessation products for low-income individuals, using LGBT “role models” to promote cessation, and ensuring that interventions reach all parts of the community.Conclusions: Findings reinforce insights from community-based research with other marginalized groups. Similarities include the importance of tailoring cessation programs for specific communities, the need to acknowledge differences within communities, and the significance of community spaces in shaping discussions of cessation. Further, this study highlights the need for heightened awareness. The Atlanta LGBT community is largely unaware that high smoking rates affect its health, and is unlikely to take collective action to address this problem until it is understood.

Expanding conceptualizations of harm reduction: results from a qualitative community-based participatory research study with people who inject drugs

BackgroundThe perspectives of people who use drugs are critical in understanding why people choose to reduce harm in relation to drug use, what practices are considered or preferred in conceptualizations of harm reduction, and which environmental factors interfere with or support the use of harm reduction strategies. This study explores how people who inject drugs (PWID) think about harm reduction and considers the critical imperative of equity in health and social services delivery for this community.MethodsThis community-based participatory research study was conducted in a Canadian urban centre. Using a peer-based recruitment and interviewing strategy, semi-structured qualitative interviews were conducted by and with PWID. The Vidaview Life Story Board, an innovative tool where interviewers and participant co-construct a visual “life-scape” using a board, markers, and customized picture magnets, was used to facilitate the interviews. The topics explored included injection drug use and harm reduction histories, facilitators and barriers to using harm reduction strategies, and suggestions for improving services and supports.ResultsTwenty-three interviews with PWID (14 men and 9 women) were analysed, with a median age of 50. Results highlighted an expanded conceptualization of harm reduction from the perspectives of PWID, including motivations for adopting harm reduction strategies and a description of harm reduction practices that went beyond conventional health-focused concerns. The most common personal practices that PWID used included working toward moderation, employing various cognitive strategies, and engaging in community activities. The importance of social or peer support and improving self-efficacy was also evident. Further, there was a call for less rigid eligibility criteria and procedures in health and social services, and the need to more adequately address the stigmatization of drug users.ConclusionsThese findings demonstrated that PWID incorporate many personal harm reduction practices in their daily lives to improve their well-being, and these practices highlight the importance of agency, self-care, and community building. Health and social services are needed to better support these practices because the many socio-structural barriers this community faces often interfere with harm reduction efforts. Finally, “one size does not fit all” when it comes to harm reduction, and more personalized or de-medicalized conceptualizations are recommended.

Clinical ethics issues in HIV care in Canada: an institutional ethnographic study

BackgroundThis is a study involving three HIV clinics in the Canadian provinces of Newfoundland and Labrador, and Manitoba. We sought to identify ethical issues involving health care providers and clinic clients in these settings, and to gain an understanding of how different ethical issues are managed by these groups.MethodsWe used an institutional ethnographic method to investigate ethical issues in HIV clinics. Our researcher conducted in-depth semi-structured interviews, compiled participant observation notes, and studied health records in order to document ethical issues in the clinics, and to understand how health care providers and clinic clients manage and resolve these issues.ResultsWe found that health care providers and clinic clients have developed work processes for managing ethical issues of various types: conflicts between client-autonomy and public health priorities (“treatment as prevention”), difficulties associated with the criminalization of nondisclosure of HIV positive status, challenges with non-adherence to HIV treatment, the protection of confidentiality, barriers to treatment access, and negative social determinants of health and well-being.ConclusionsSome ethical issues resulted from structural disadvantages experienced by clinic clients. The most striking findings in our study were the negative social determinants of health and well-being experienced by some clinic clients – such as experiences of violence and trauma, poverty, racism, colonization, homelessness, and other factors affecting well-being such as problematic substance use. These negative determinants were at the root of other ethical issues, and are themselves of ethical concern.