Background Compensation for participating in reseach has been a fundamental element of the research apparatus despite concerns about its impact on incentivizing participation. Researchers and research ethics boards acknowledge that compensation may prompt structurally vulnerable populations, such as people who use drugs (PWUD), to engage in research primarily out of financial need. Thus, institutional restrictions around compensation have been implemented. This study explores the ethical implications of compensation practices aimed at ‘protecting’ structurally vulnerable people living with HIV (PLHIV) who use drugs within the context of individuals’ lived realities. Methods We draw on five focus groups conducted in 2011 with 25 PLHIV who use drugs and access a community-based HIV care facility in Vancouver, Canada. This analysis focused on participants’ perceptions of research compensation, which became the central point of discussion in each group. Findings Participants viewed research as a transactional process through which they could challenge the underpinnings of bioethics and bargain for compensation. Research compensation was thus critical to attracting participants and positioned as a ‘legitimate’ form of income. Participants’ medicalized identities, specifically living with HIV, were fundamental to justifying compensation. The type of compensation (e.g. gift card, cash) also significantly impacted whether participants’ were fully compensated and, at times, served to exacerbate their structural vulnerability. Conclusion Research compensation is critical in shaping structurally vulnerable populations’ participation and experiences with research and can further marginalize individuals. Practices surrounding research compensation, particularly for drug-using and HIV-positive populations, need to be evaluated to ensure participants are equitably compensated for the expertise they provide.

Background Spotting is an informal practice among people who use drugs (PWUD) where they witness other people using drugs and respond if an overdose occurs. During COVID-19 restrictions, remote spotting (e.g., using a telephone, video call, and/or a social media app) emerged to address physical distancing requirements and reduced access to harm reduction and/or sexually transmitted blood borne infection (STBBI’s) prevention services. We explored spotting implementation issues from the perspectives of spotters and spottees. Methods Research assistants with lived/living expertise of drug use used personal networks and word of mouth to recruit PWUD from Ontario and Nova Scotia who provided or used informal spotting. All participants completed a semi-structured, audio-recorded telephone interview about spotting service design, benefits, challenges, and recommendations. Recordings were transcribed and thematic analysis was used. Results We interviewed 20 individuals between 08/2020–11/2020 who were involved in informal spotting. Spotting was provided on various platforms (e.g., telephone, video calls, and through texts) and locations (e.g. home, car), offered connection and community support, and addressed barriers to the use of supervised consumption sites (e.g., location, stigma, confidentiality, safety, availability, COVID-19 related closures). Spotting calls often began with setting an overdose response plan (i.e., when and who to call). Many participants noted that, due to the criminalization of drug use and fear of arrest, they preferred that roommates/friends/family members be called instead of emergency services in case of an overdose. Both spotters and spottees raised concerns about the timeliness of overdose response, particularly in remote and rural settings. Conclusion Spotting is a novel addition to, but not replacement for, existing harm reduction services. To optimize overdose/COVID-19/STBBI’s prevention services, additional supports (e.g., changes to Good Samaritan Laws) are needed. The criminalization of drug use may limit uptake of formal spotting services.

HIV-associated neurocognitive disorder (HAND) is common, but the lived experience of HAND is not well-understood. In this descriptive qualitative study, we explored how adults with HAND view, manage, and obtain support for cognitive difficulties. We interviewed 25 participants (20% female; median age = 51 years) who were diagnosed with HAND using neuropsychological assessment and a clinical interview. Semistructured interviews, co-developed with community members living with HIV, focused on how cognitive difficulties manifested and progressed, impacted well-being, and were discussed with others. We analyzed interview transcripts using a team-based, thematic approach. Participants described concentration, memory, and multitasking difficulties that fluctuated over time, as well as potential risk factors, management strategies, and psychosocial consequences. They reported they seldom discussed cognitive impairment with health care professionals, and that receiving a HAND diagnosis was validating, informative, yet somewhat disconcerting. Conversations between health care professionals and people living with HIV about HAND may provide opportunities for education, assessment, and support.

Introduction: Social-structural inequities impede access to, and retention in, HIV care among structurally vulnerable people living with HIV (PLHIV) who use drugs. The resulting disparities in HIV-related outcomes among PLHIV who use drugs pose barriers to the optimization of HIV treatment as prevention (TasP) initiatives. We undertook this study to examine engagement with, and impacts of, an integrated HIV care services model tailored to the needs of PLHIV who use drugs in Vancouver, Canada – a setting with a community-wide TasP initiative. Methods: We conducted qualitative interviews with 30 PLHIV who use drugs recruited from the Dr. Peter Centre, an HIV care facility operating under an integrated services model and harm reduction approach. We employed novel analytical techniques to analyse participants’ service trajectories within this facility to understand how this HIV service environment influences access to, and retention in, HIV care among structurally vulnerable PLHIV who use drugs. Results: Our findings demonstrate that participants’ structural vulnerability shaped their engagement with the HIV care facility that provided access to resources that facilitated retention in HIV care and antiretroviral treatment adherence. Additionally, the integrated service environment helped reduce burdens associated with living in extreme poverty by meeting participants’ subsistence (e.g. food, shelter) needs. Moreover, access to multiple supports created a structured environment in which participants could develop routine service use patterns and have prolonged engagement with supportive care services. Our findings demonstrate that low-barrier service models can mitigate social and structural barriers to HIV care and complement TasP initiatives for PLHIV who use drugs. Conclusions: These findings highlight the critical role of integrated service models in promoting access to health and support services for structurally vulnerable PLHIV. Complementing structural interventions with integrated service models that are tailored to the needs of structurally vulnerable PLHIV who use drugs will be pursuant to the goals of TasP.

BackgroundCommunity-based HIV, harm reduction, and addiction research increasingly involve members of affected communities as Peer Research Associates (PRAs)—individuals with common experiences to the participant population (e.g. people who use drugs, people living with HIV [PLHIV]). However, there is a paucity of literature detailing the operationalization of PRA hiring and thus limited understanding regarding how affected communities can be meaningfully involved through low-barrier engagement in paid positions within community-based participatory research (CBPR) projects. We aim to address this gap by describing a low-threshold PRA hiring process.ResultsIn 2012, the BC Centre for Excellence in HIV/AIDS and the Dr. Peter AIDS Foundation collaborated to develop a mixed-method CBPR project evaluating the effectiveness of the Dr. Peter Centre (DPC)—an integrative HIV care facility in Vancouver, Canada. A primary objective of the study was to assess the impact of DPC services among clients who have a history of illicit drug use. In keeping with CBPR principles, affected populations, community-based organizations, and key stakeholders guided the development and dissemination of a low-barrier PRA hiring process to meaningfully engage affected communities (e.g. PLHIV who have a history of illicit drug use) in all aspects of the research project.The hiring model was implemented in a number of stages, including (1) the establishment of a hiring team; (2) the development and dissemination of the job posting; (3) interviewing applicants; and (4) the selection of participants. The hiring model presented in this paper demonstrates the benefits of hiring vulnerable PLHIV who use drugs as PRAs in community-based research.ConclusionsThe provision of low-barrier access to meaningful research employment described herein attempts to engage affected communities beyond tokenistic involvement in research. Our hiring model was successful at engaging five PRAs over a 2-year period and fostered opportunities for future paid employment or volunteer opportunities through ongoing collaboration between PRAs and a diverse range of stakeholders working in HIV/AIDS and addictions. Additionally, this model has the potential to be used across a range of studies and community-based settings interested in meaningfully engaging communities in all stages of the research process.Electronic supplementary materialThe online version of this article (doi:10.1186/s12954-016-0116-z) contains supplementary material, which is available to authorized users.