“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

Abstract

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.

Patient and stakeholder perspectives on impacts of the COVID-19 pandemic on HIV and mental health care delivery in South Africa

“…While increased structural barriers to accessing treatment (e.g., longer wait times) negatively impacted participant perceptions of care, reduced privacy during care interactions was described as the primary challenge negatively affecting the quality and breadth of clinical consultation. Broadly, findings align with those of qualitative studies conducted in other settings, which have identified both new and increased barriers for PWH during the pandemic 14–17,19,20 and differ from prior qualitative work in South Africa, which was conducted within a program for highly adherent PWH. 13

Figure 1.Conceptual map of themes.

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“…Moreover, PWH have described numerous pandemic-related challenges with their HIV care in other settings, including Ghana, Hong Kong, Pakistan, Uganda, the United States, and the United Kingdom. [14][15][16][17][18][19][20] These include increased personal challenges, such as increased economic struggle and mental health symptoms, and increased systems barriers, such as structural barriers to accessing services (e.g., cancellations) and reduced privacy.…”

Investigation into the psychological impact of the COVID-19 pandemic for people living with HIV

“…8,27 These findings also counter previous studies reporting disproportionate mental health impact on PLWH. [4][5][6][7][8][9][10] Although our findings may be influenced by the demographics of our cohort (predominantly male, educated, economically stable and white), it is important that future work clarifies the psychological impact of pandemics on PLWH, as it will inform future pandemic policy and support. Our findings found that, despite a small sample size, a higher proportion of women, POC and those self-reporting economic instability reported dysfunctional pandemicrelated anxiety.…”

“…The detrimental impact on the mental health of PLWH during the pandemic has been reported in multiple settings. [3][4][5][6][7][8][9][10] There are many potential drivers of this. From a health perspective, PLWH have voiced concerns about being at greater risk of serious illness and death from COVID-19, 4,11 worry about access to healthcare services 12,13 and a heightened fear of HIV-status disclosure during the pandemic.…”

Stress, Support, and Length of Diagnosis Among Women Living with HIV/AIDS in the Southern USA, During the COVID-19 Pandemic

“…Other studies reported that emotional distress caused by the pandemic affected adherence and retention, especially among newly diagnosed PLWH. [28][29][30] Long-term survivors, or individuals who have lived with HIV for several years, are at higher risk of multiple comorbidities 31,32 , more severe premature aging and cognitive dysfunction when living with HIV for longer than 10 yearsindependent of age in years. 27 Among those living with HIV for longer than 10 years, higher levels of HIV stigma, and social isolation 31,32 were reported, as well.…”