“They kicked me out of hospital twice”: a qualitative study of barriers and facilitators to accessing care for people with an injecting-related infection

Background: Evidence suggests people who inject drugs with an invasive infection are less likely to complete treatment, have poorer treatment outcomes, and are more likely to have a recurrent event. Understanding patient experiences is essential for improving healthcare provision and access.

Methods: This qualitative study explored experiences of people who had been hospitalised with an invasive infection. Between April and June 2023, 20 participants were recruited from SuperMIX, a cohort of people who inject drugs in Melbourne, Victoria. Thematic analysis used iterative, inductive coding, identifying key themes that characterised participants’ barriers and facilitators to treatment.

Results: Participants had been hospitalised with a range of infections, including endocarditis and sepsis. Participants described intersecting internal and external barriers to healthcare engagement resulting in delayed presentation and self-directed discharge. Some considered healthcare providers and settings hostile. Often, participants described presenting to emergency services and not being believed when discussing their symptoms. Health literacy varied markedly, and it was common for patients to treat their symptoms with increased drug use, sometimes unaware of the cause. While family support typically enabled participants to seek or stay in treatment, caring responsibilities precluded others – often mothers – from remaining in hospital. Participants reflected that retention in hospital improved with peer support, specialised addictions teams, and clinicians who understood their need for adequate pain management. Barriers to engaging in follow-up care were cost and/or complexity of care pathways, and limited options that suited participants’ circumstances.

Conclusion: Improving treatment engagement and patient outcomes/experience requires mutual trust between patients and healthcare services. Improving health literacy and management strategies of people experiencing any symptoms could prevent additional harm. Patient models of care for injecting-related infections should consider circumstances that impact patients’ capacity to engage in treatment. Treatment flexibility and accessibility of care are central to such models.

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