“They kicked me out of hospital twice”: barriers and facilitators accessing care with an injecting-related infection

Background: Injecting-related bacterial infections are increasing in many countries. Life threatening systemic infections, such as endocarditis, often require extensive treatment time in hospital and long courses of antibiotics. There is evidence that 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.

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

Results: Ten participants had been hospitalised with infective endocarditis. Other infections included sepsis, complicated skin and soft tissue infections, septic arthritis, deep abscess, and pneumonia. 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 (ambulance or hospital) and not being believed when discussing the presence or severity of 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 their retention in hospital improved with support from peer workers, specialised addictions teams, and other clinicians who understood their need for early and adequate pain management. Barriers to engaging in follow-up care were the cost or logistical complexity of care pathways, as well as limited options that suited participants’ circumstances. For example, few participants described being offered hospital in the home for ongoing intravenous antibiotic therapy.

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