"I know my body better than anyone else": a qualitative study of perspectives of people with lived experience on antimicrobial treatment decisions for injection drug use-associated infections.

Background: People who inject drugs (PWID) are at risk for severe bacterial and fungal infections including skin and soft tissue infections, endocarditis, and osteomyelitis. PWID have high rates of self-directed discharge and are often not offered outpatient antimicrobial therapies, despite studies showing their efficacy and safety in PWID. This study fills a gap in knowledge of patient and community partner perspectives on treatment and discharge decision making for injection drug use (IDU)-associated infections. Methods: We conducted semi-structured interviews with patients (n = 10) hospitalized with IDU-associated infections and community partners (n = 6) in the Portland, Maine region. Community partners include peer support workers at syringe services programs (SSPs) and outreach specialists working with PWID. We transcribed and thematically analyzed interviews to explore perspectives on three domains: perspectives on long-term hospitalization, outpatient treatment options, and patient involvement in decision making. Results: Participants noted that stigma and inadequate pain management created poor hospitalization experiences that contributed to self-directed discharge. On the other hand, patients reported hospitalization provided opportunities to connect to substance use disorder (SUD) treatment and protect them from outside substance use triggers. Many patients expressed interest in outpatient antimicrobial treatment options conditional upon perceived efficacy of the treatment, perceived ability to complete treatment, and available resources and social support. Finally, both patients and community partners emphasized the importance of autonomy and inclusion in medical decision making. Although some participants acknowledged their SUD, withdrawal symptoms, or undertreated pain might interfere with decision making, they felt these medical conditions were not justification for health care professionals withholding treatment options. They recommended open communication to build trust and reduce harms. Conclusion: Patients with IDU-associated infections desire autonomy, respect, and patient-centered care from healthcare workers, and may self-discharge when needs or preferences are not met. Involving patients in treatment decisions and offering outpatient antimicrobial options may result in better outcomes. However, patient involvement in decision making may be complicated by many contextual factors unique to each patient, suggesting a need for shared decision making to meet the needs of hospitalized patients with IDU-associated infections.

'I feel like they're actually listening to me': a pilot study of a hospital discharge decision-making conversation guide for patients with injection drug use-associated infections.

Background: The prevalence of injection drug use (IDU)-associated infections and associated hospitalizations has been increasing for nearly two decades. Due to issues ranging from ongoing substance use to peripherally inserted central catheter safety, many clinicians find discharge decision-making challenging. Typically, clinicians advise patients to remain hospitalized for several weeks for intravenous antimicrobial treatment; however, some patients may desire other antimicrobial treatment options. A structured conversation guide, delivered by infectious disease physicians, intended to inform hospital discharge decisions has the potential to enhance patient participation in decisions. We developed a conversation guide in order to: (1) investigate its feasibility and acceptability and (2) examine experiences, outcomes, and lessons learned from use of the guide. Methods: We interviewed physicians after they each piloted the conversation guide with two patients. We interviewed patients immediately after the conversation and again 4-6 weeks later. Two analysts indexed transcriptions and used the framework method to identify and organize relevant information. We conducted retrospective chart review to corroborate and contextualize qualitative data. Results: Eight patients and four infectious disease physicians piloted the conversation guide. All patients (N = 8) completed antimicrobial treatment. Nearly all participants believed the conversation guide was important for incorporating patient values and preferences. Patients reported an increased sense of autonomy, but felt post-discharge needs could be better addressed. Physician participants identified the guide's long length and inclusion of pain management as areas for improvement. Conclusions: A novel conversation guide to inform hospital discharge decision-making for patients with IDU-associated infections was feasible, acceptable, and fostered the incorporation of patient preferences and values into decisions. While we identified areas for improvement, overall participants believed that this novel conversation guide helped to improve patient care and autonomy.

Health care professional perspectives on discharging hospitalized patients with injection drug use-associated infections.

Background: Patients with injection drug use (IDU)-associated infections traditionally experience prolonged hospitalizations, which often result in negative experiences and bad outcomes. Harm reduction approaches that value patient autonomy and shared decision-making regarding outpatient treatment options may improve outcomes. We sought to identify health care professionals (HCPs) perspectives on the barriers to offering four different options to hospitalized people who use drugs (PWUD): long-term hospitalization, oral antibiotics, long-acting antibiotics at an infusion center, and outpatient parenteral antibiotics. Methods: We recruited HCPs (n = 19) from a single tertiary care center in Portland, Maine. We interviewed HCPs involved with discharge decision-making and other HCPs involved in the specialized care of PWUD. Semi-structured interviews elicited lead HCP values, preferences, and concerns about presenting outpatient antimicrobial treatment options to PWUD, while support HCPs provided contextual information. We used the iterative categorization approach to code and thematically analyze transcripts. Results: HCPs were willing to present outpatient treatment options for patients with IDU-associated infections, yet several factors contributed to reluctance. First, insufficient resources, such as transportation, may make these options impractical. However, HCPs may be unaware of existing community resources or viable treatment options. They also may believe the hospital protects patients, and that discharging patients into the community exposes them to structural harms. Some HCPs are concerned that patients with substance use disorder will not make 'good' decisions regarding outpatient antimicrobial options. Finally, there is uncertainty about how responsibility for offering outpatient treatment is shared across changing care teams. Conclusion: HCPs perceive many barriers to offering outpatient care for people with IDU-associated infections, but with appropriate interventions to address their concerns, may be open to considering more options. This study provides important insights and contextual information that can help inform specific harm reduction interventions aimed at improving care of people with IDU-associated infections.

Patients' and caregivers' experiences of hospitalization under COVID-19 visitation restrictions.

BACKGROUND: During the COVID-19 pandemic, hospitals did not allow caregiver visitation. Little is known about how caregivers' absence affected patients' care. OBJECTIVE: This study aimed to describe visitation restrictions' impact on patients and their caregivers experiences. DESIGN: We used a sequential explanatory mixed-methods study design. First, we randomly selected 200 adult patients with cancer or heart failure hospitalized before (n = 100) and during visitor restrictions (n = 100) and abstracted data from the electronic medical record on communication between medical teams and caregivers and the topics discussed. Results from the quantitative analysis guided our thematic analysis of semi-structured interviews conducted with a subsample of patients hospitalized during visitor restrictions and their caregivers to understand the impact of visitor restrictions on their experiences. RESULTS: Compared to prerestrictions, caregivers under visitation restrictions communicated less frequently with the medical team (29% vs. 37% of hospitalized days; p = .04), fewer received discharge counseling (37% vs. 52%; p = .04), and disproportionately more had no contact with the medical team (36% vs. 17%; p < .01). Video conferencing was documented for caregivers of only five patients. Qualitative analysis revealed that both caregivers and patients experienced emotional distress, increased conflict, and decreased perception of quality of care because of visitation restrictions. CONCLUSIONS: Hospital visitor restrictions significantly reduced caregivers' communication with patients' medical team, causing caregivers and patients emotional distress. Protocols that facilitate communication between caregivers and care teams may benefit caregivers who cannot be physically present at care facilities, including distance caregivers.

The impact of the COVID-19 pandemic on people who inject drugs accessing harm reduction services in an rural American state.

BACKGROUND: The impact of public health policies during the COVID-19 pandemic on people who inject drugs (PWID) has varied across regions. In other countries, recent research has shown that PWID access to harm reduction services, despite rapid adaptations, has been negatively impacted. Our study describes these impacts in a rural state. METHODS: We conducted semi-structured interviews with PWID, community partners, and healthcare providers in the rural state of Maine (USA). We explored how changes made during the pandemic impacted access to harm reduction services, including basic services (i.e., shelter), syringe service programs, safe drug supply, low barrier treatment, and peer support. Interviews were analyzed using the framework method to apply Penchansky's model of access, with Saurman's modification, which includes six dimensions of access-accessibility, availability, acceptability, affordability, accommodation, awareness. RESULTS: We interviewed thirty-six stakeholders (N = 9 community partners, N = 9 healthcare providers, N = 18 PWID). Policies such as mobile outreach expansion, mail delivery of equipment, and relaxed telemedicine regulations facilitated accessibility to syringe service programs and low barrier buprenorphine treatment. Public health policies, such as social distancing and screening policies, reduced contact, which subsequently reduced acceptability and awareness of many services. Elimination of the one-for-one needle exchange in some areas increased, acceptability (i.e., perception of service), and affordability for PWID. However, some areas actually began enforcing a one-for-one needle exchange policy, which reduced affordability, acceptability, and awareness of services. CONCLUSIONS: Changes resulting from the COVID-19 pandemic have impacted all dimensions of access to harm reduction services among PWID. While some barriers to harm reduction services were unavoidable during the pandemic, we found that specific policy decisions mitigated service barriers, while other policies exacerbated them. Relaxing needle exchange policies were particularly helpful in facilitating access to harm reduction services by giving community organizations flexibility to adapt to the evolving needs of PWID. These results can inform policies and service delivery to optimally mitigate the negative impacts on PWID during, and beyond, the pandemic.

"Doing Good" in U.S. Cancer Genomics? Valuation practices across the boundaries of research and care in rural community oncology.

Genomic Tumour Testing (GTT) is an emerging site of "experimental care" in oncology [Cambrosio, Alberto, Peter Keating, Etienne Vignola-Gagné, Sylvain Besle, and Pascale Bourret. 2018a. "Extending Experimentation: Oncology's Fading Boundary Bbetween Research and Care." New Genetics and Society 37 (3): 207-226. doi: 10.1080/14636778.2018.1487281]. Few efforts to implement GTT have reached community oncology practices or patients living in rural communities within the US. Drawing on interdisciplinary research on a state-wide cancer genomics initiative in the rural US state of Maine, this paper explores the valuation practices within community oncologist and cancer stakeholders accounts of "doing good" within genomic science and care. We contribute to STS literatures on the bio-economy by highlighting the affective dimensions of strategies for managing economic and non-economic values. Clinician and stakeholders negotiated de-economizing and capitalizing modes of doing good as they built local genomic platforms "for Maine." These situated modes of doing good and feeling good via cancer genomics shaped how they navigated the ethical ambiguities of US biomedical markets across the boundaries of research and care.

Hazards from physical attributes of the home environment among patients on outpatient parenteral antimicrobial therapy.

BACKGROUND: Outpatient parenteral antimicrobial therapy (OPAT) requires that patients and their caregivers administer antimicrobial medications in the home via venous catheters. Hazards from physical attributes of the home environment may impede safe performance of OPAT tasks. METHODS: We performed a qualitative study, including semistructured telephone interviews and contextual inquiries, of patients performing OPAT tasks inside the home. Eligible participants were discharged from 2 academic medical centers in Baltimore, Maryland, on OPAT. We coded interview transcripts and contextual inquiry forms based on a model of healthcare work systems. RESULTS: Twenty-nine patients underwent semistructured telephone interviews, and 14 patients underwent contextual inquiry. We identified hazards including bathing, animal or pets, extremes in temperature, household clutter, indoor soil and food exposures, outdoor soil, and travel. Patients often developed strategies to mitigate these hazards. DISCUSSION: Multiple hazards related to the home environment could have led to harm, and in the absence of specific guidance, patients developed strategies to mitigate these hazards. CONCLUSIONS: Educational interventions to improve OPAT should incorporate an understanding of hazards that may occur in the home environment.