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UBC Theses and Dissertations

Participation amidst precarity : medical research experiences among people who use drugs Jaffe, Kaitlyn


To demonstrate the efficacy of an intervention, randomized controlled trials (RCTs) are considered the “gold standard” of study design. Yet RCTs are challenging to conduct, given the difficulty in recruiting and retaining representative study populations and ensuring external generalizability. These challenges may be amplified in substance use research with people who use drugs (PWUD), who often experience drug-related stigma, socioeconomic marginalization, and criminalization, that can deter them from trial engagement. Given these potential barriers, research has started exploring RCT participant perspectives, with a focus on individual and trial features, such as barriers or incentives to attending follow-ups. However, few studies have investigated features of the broader social and structural context in which clinical knowledge around substance use is produced. Considering this area for further research, I conducted a nested qualitative study with PWUD in a multi-site, pragmatic RCT for opioid use disorder. Using data from 115 interviews across five Canadian cities, I develop three analyses investigating micro-, meso-, and macro-level influences on PWUD trial experiences and processes of knowledge production in experimental substance use research. First, I characterize participants by their experience with treatment and drug cultures to demonstrate how participants’ accumulated experiences shape medication beliefs (e.g., safety, efficacy), as well as stigma and the sourcing of health information. Second, I link sociological concepts around alienation to drug use and research participation in order to investigate participants’ underlying reasons for trial enrollment, including instrumental (e.g., employment opportunities), altruistic (e.g., community benefit), and social (e.g., rebuilding social ties) motivations. Finally, I draw on theoretical linkages between place and health to compare participant experiences across Canada and demonstrate how spaces (e.g., proximity to drugscapes) and interactions within them (e.g., healthcare provider stigma) shape study experiences. I also consider how macro-level forces (e.g., medication coverage) structure treatment contexts, thus impacting the study (e.g., incentivizing enrollment). By applying a sociological lens to RCT processes, this dissertation reveals how contextual features, from drug-related stigma to drug policy, underlie supposedly objective processes of knowledge production. Building on these results, I provide key recommendations for adapting RCT processes to improve the research experiences of marginalized PWUD.

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