“I Just Need Proper Treatment”: Being Hospitalized for Endocarditis among Individuals Who Inject Drugs Being Hospitalized for Endocarditis

Background Rates of hospitalization for injection drug use-associated infective endocarditis (IDU-IE) are increasing. Much is known about the poor outcomes of patients with IDU-IE; less is known about the patient experience during hospitalization. Objective To explore the experience of being hospitalized for endocarditis among individuals who inject drugs, providing a foundation on which to develop strategies to improve care for these patients. Design Qualitative interviews with hospitalized patients undergoing cardiothoracic surgery with a history of injection drug use between February 2021 and May 2022 at the Hospital of the University of Pennsylvania. Participants Cardiothoracic surgery patients with a documented history of injection drug use and the ability to speak English were recruited during their hospital stay. Approach Thematic analysis of interviews guided by phenomenology and harm reduction theory was used to identify recurrent themes. Interviews were digitally recorded and transcribed and analyzed using NVIVO software. Key Results Interviews from 13 participants resulted in four major themes around Hospital Experience: (1) Kindness as an Antidote to Dehumanizing Treatment; (2) Relationships with the Care Team; (3) Withdrawal and Pain Management; and (4) Anticipating and Experiencing the Transition out the Hospital. Participants recounted long histories of dehumanizing care during previous hospitalizations, noted the value of open, sincere, and non-judgmental communication with clinical teams, expressed overall satisfaction with the management of their symptoms during the current hospitalization, reported self-discharging during previous hospitalizations due to undertreated pain and withdrawal, and noted significant challenges around discharge planning and execution. Conclusions Participants noted structural (e.g., discharge planning) and interpersonal (e.g., stigma from care team) barriers to quality hospital care. They also noted that expressions of kindness from hospital staff were meaningful and comforting. Patients with IDU-IE face multi-dimensional challenges in the hospital. Their perspectives can meaningfully inform programs and initiatives to improve their outcomes and support recovery.