"Even if I'm undetectable, I just feel like I would die": a qualitative study to understand the psychological and socioeconomic impacts of the COVID-19 pandemic on women living with HIV (WLWH) in Chicago, IL.

BACKGROUND: The COVID-19 pandemic has affected the health and well-being of people worldwide, yet few studies have qualitatively examined its cumulative effects on ciswomen living with HIV (WLWH). We aimed to explore how the pandemic has impacted WLWH, including challenges related to HIV care, employment, finances, and childcare. We also investigated how HIV status and different psychosocial stressors affected their mental health. METHODS: We performed 25 semi-structured qualitative interviews with WLWH regarding the ways in which COVID-19 impacted their social determinants of health and physical well-being during the pandemic. 19 WLWH who received care at the University of Chicago Medicine (UCM) and 6 women who received care at Howard Brown Health, a federally qualified health center (FQHC) in Chicago, were interviewed remotely from June 2020 to April 2021. All interviews were audio recorded and transcribed. Interviews were thematically analyzed for commonalities regarding HIV-specific and general experiences of WLWH during the pandemic. RESULTS: The majority of participants reported COVID-19 impacted their HIV care, such as appointment cancellations and difficulties adhering to antiretroviral therapy. In addition to HIV care obstacles, almost all participants described perceived heightened vulnerability to or fear of COVID-19. The pandemic also affected the socioeconomic well-being of participants, with reported financial strains and employment disruptions. Some mothers took on additional childcare responsibilities, such as homeschooling. Increased mental health concerns and negative psychological effects from the social isolation associated with the pandemic were also experienced by most participants. CONCLUSIONS: We gained invaluable insight into how WLWH were challenged by and adapted to the COVID-19 pandemic, including its destabilizing effects on their HIV care and mental health. Women described how they undertook additional childcare responsibilities during the pandemic and how their HIV status compounded their concerns (e.g., perceived heightened vulnerability to COVID-19). Strategies to better support WLWH in maintaining their overall health throughout the pandemic include childcare assistance, access to affordable mental health services, support groups, and education from HIV care providers. These findings have significant implications for examining future health crises through the perspective of potential gender inequalities.

"When you have an immune disease like HIV and there is a pandemic, you still have to pay your bills": COVID-19-related challenges among people living with HIV and lessons for care delivery.

COVID-19 has disrupted routine medical care and increased psychosocial and economic stressors on a global scale, yet the full impact on people living with HIV (PLWH) and the HIV continuum of care remains unknown. As the pandemic continues to pose a significant threat to PLWH and their care, this research qualitatively aimed to elicit COVID-19-related challenges and perspectives of PLWH during the early phase of the pandemic and to identify lessons learned and impactful strategies for facilitating HIV care. We recruited 32 PLWH who receive care at a large academic medical center for semi-structured remote interviews to assess psychological/structural stressors experienced during the pandemic and to discern strategies for improving care. Most participants identified as Black (91%) and heterosexual (56%). Overall, PLWH reported exacerbated mental health stressors (e.g., anxiety, depression, substance use). Most participants cited no issues with antiretroviral therapy (ART) adherence or retention in care, yet five participants reported appointment cancellations or physician inaccessibility. Participants provided specific feedback for facilitating continued engagement in care during the pandemic, including telemedicine and education/patient empowerment. By seeking participant-provided solutions, this study centered on PLWH's experiences and emphasized proactive HIV care strategies for prioritizing patient empowerment and healthcare adaptability during a rapidly evolving pandemic.

"That same stigma...that same hatred and negativity:" a qualitative study to understand stigma and medical mistrust experienced by people living with HIV diagnosed with COVID-19.

BACKGROUND: The COVID-19 and HIV epidemics have exacerbated existing inequities among vulnerable groups and severely impacted communities of color. People living with HIV (PLWH), who may already face stigma or discrimination, are at risk of experiencing further stigma as a result of COVID-19, which can result in medical mistrust. METHODS: We performed qualitative interviews between June and August 2020 among 32 PLWH, including 10 individuals diagnosed with COVID-19. A majority of participants perceived themselves as having an increased risk of contracting COVID-19 due to their HIV status. RESULTS: Of those who tested positive for COVID-19, the majority regarded their HIV diagnosis as having a more profound impact on their lives but found similarities between COVID-19 stigma and HIV-related stigma. Many participants also expressed mistrust. CONCLUSIONS: These results can be used to better understand the perspectives of PLWH during the COVID-19 pandemic and have important implications for potential COVID-19 vaccine hesitancy and future health crises.

Patient and Public Involvement Refines the Design of ProtOeus: A Proposed Phase II Trial of Proton Beam Therapy in Oesophageal Cancer.

BACKGROUND: Neoadjuvant chemoradiotherapy for oesophageal cancer significantly improves overall survival but is associated with severe post-operative complications. Proton beam therapy may reduce these toxicities by sparing normal tissues compared with standard radiotherapy. ProtOeus is a proposed randomised phase II study of neoadjuvant chemoradiotherapy in oesophageal cancer that compares proton beam therapy to standard radiotherapy techniques. As proton beam therapy services are often centralised in academic centres in major cities, proton beam therapy trials raise distinct challenges including patient acceptance of travelling for proton beam therapy, coordination of treatments with local centres and ensuring equity of access for patients. METHODS: Focus groups were held early in the trial development process to establish patients' views on the trial proposal. Topics discussed include perception of proton beam therapy, patient acceptability of the trial pathway and design, patient-facing materials, and common clinical scenarios. Focus groups were led by the investigators and facilitated by patient involvement teams from the institutions who are involved in this research. Responses for each topic were analysed, and fed back to the trial's development group. RESULTS: Three focus groups were held in separate locations in the UK (Manchester, Cardiff, Wigan). Proton beam therapy was perceived as superior to standard radiotherapy making the trial attractive. Patients felt strongly that travel costs should be reimbursed to ensure equity of access to proton beam therapy. They were very supportive of a shorter treatment schedule and felt that toxicity reduction was the most important endpoint. DISCUSSION AND CONCLUSIONS: Incorporating patient views early in the trial development process resulted in significant trial design refinements including travel/accommodation provisions, choice of primary endpoint, randomisation ratio and fractionation schedule. Focus groups are a reproducible and efficient method of incorporating the patient and public voice into research.