Breaching Trust: A Qualitative Study of Healthcare Experiences of People Who Use Drugs in a Rural Setting

Abstract

Background: Increased drug use has disproportionately impacted rural areas across the U.S. People who use drugs are at risk of overdose and other medical complications, including infectious diseases. Understanding barriers to healthcare access for this often stigmatized population is key to reducing morbidity and mortality, particularly in rural settings where resources may be limited. Methods: We conducted 20 semi-structured interviews with people who use drugs, including 17 who inject drugs, in rural southern Illinois between June 2018 and February 2019. Interviews were analyzed using a modified grounded theory approach where themes are coded and organized as they emerge from the data. Results: Participants reported breaches of trust by healthcare providers, often involving law enforcement and Emergency Medical Services, that dissuaded them from accessing medical care. Participants described experiences of mistreatment in emergency departments, with one account of forced catheterization. They further recounted disclosures of protected health information by healthcare providers, including communicating drug test results to law enforcement and sharing details of counseling sessions with community members without consent. Participants also described a hesitancy common among people who use drugs to call emergency medical services for an overdose due to fear of arrest. Conclusion: Breaches of trust by healthcare providers in rural communities discouraged people who use drugs from accessing medical care until absolutely necessary, if at all. These experiences may worsen healthcare outcomes and further stigmatize this marginalized community. Structural changes including reforming and clarifying law enforcement's role in Emergency Departments as well as instituting diversion policies during arrests may help rebuild trust in these communities. Other possible areas for intervention include stigma training and harm reduction education for emergency medicine providers, as well as developing and implementing referral systems between Emergency Departments and local harm reduction providers and medically assisted drug treatment programs.

Perspectives About Emergency Department Care Encounters Among Adults With Opioid Use Disorder

“… 13 , 14 The treatment gap between people with OUD and those engaged in treatment 15 , 16 is associated with stigma, limited patient knowledge about and motivation for treatment, socioeconomic barriers to treatment, and racial and ethnic disparities in access to treatment. 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 These patient-related factors should be considered when designing interventions to engage patients in the ED. We aimed to explore patients’ perspectives on receiving OUD-related care in the ED to inform future implementation efforts to promote OUD treatment initiation and improve patient-centered care in the ED for those with OUD.…”

Rural and Urban Differences in Overdose Response and Prevention Among Persons Who Inject Drugs

“…Both New York and Illinois have enacted Good Samaritan Laws (GSL) that offer legal protection to people who call 911 or seek medical attention related to an opiate overdose (54). While these laws have been associated with reductions in opioid related mortality (55), our data as well as others (56,57), suggests that participants are either unaware of GSL or that distrust and fear of police remain a barrier to overdose response despite GSL. These ndings suggest interventions are needed to further support PWID in both locations to use Naloxone and call 911 when witnessing an overdose.…”

PrEP Care Continuum Engagement Among Persons Who Inject Drugs: Rural and Urban Differences in Stigma and Social Infrastructure

“…Drug use stigma permeated almost all interactions for participants in Illinois who were concerned about community members knowing their whereabouts [ 81 ]. Participants could avoid local care by traveling elsewhere, thus mitigating stigma, but most participants did not have the means to go out of town.…”

“…In addition to stigma due to sexualities, stigma due to drug use and HIV operated as barriers to willingness to take PrEP. Stigma was more pronounced in the rural setting due to the small town sociability patterns where everyone knew each other’s activities and whereabouts and where participants faced discrimination from community members, healthcare providers, and law enforcement [ 79 , 81 ]. In NYC, collective memories and trauma [ 103 , 111 ] associated with HIV evoked a sense of fear among participants, but at the same time these memories humanized people with HIV, thus mitigating HIV stigma.…”

“…The NYC SSP was a fixed location in Manhattan and as such offered various peer groups, computers, phone service, internet access, and food, in addition to other services. In Illinois, the authors partnered with an existing research project, Ending Transmission of HIV, HCV, and Overdose in Rural Communities of People Who Inject Drugs (ETHIC) who they had been working with for three years [ 28 , 79 , 81 , 82 ]. As such, the study staff in Illinois had strong community ties as they had been working with the PWID population and the SSP.…”