- Open Access
“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
BMC Women's Health volume 22, Article number: 218 (2022)
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.
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.
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.
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.
The COVID-19 pandemic has uniquely impacted people living with HIV (PLWH) worldwide [1,2,3,4,5,6,7,8]. PLWH, who are disproportionately impacted by mental health [9,10,11] and substance use disorders [12, 13], may suffer increased psychosocial burdens as a result of the pandemic. Qualitative studies have demonstrated that PLWH have experienced perceived heightened vulnerability to COVID-19 throughout the pandemic [4, 14,15,16,17]. PLWH have also voiced concerns that having COVID-19 may lead to HIV status disclosure  and further stigmatization, particularly for Black/African American patients [4, 15, 18].
Additionally, the COVID-19 pandemic has disproportionately impacted the childcare responsibilities and psychological well-being of women. The burden of unpaid care work has increased among women, exacerbating preexisting gender inequalities . Women have assumed almost twice as much of the childcare responsibilities compared to men  and have suffered more work disruption than men [21,22,23,24]. During the pandemic, women have experienced a higher degree of multifactorial stress when compared to men . Women feel a greater sense of COVID-19 anxiety  and may also experience greater physiological and psychological effects from the pandemic [22, 27, 28]. Moreover, a high degree of comorbidity across mood disorders, anxiety disorders, and substance use disorders has been found among women living with HIV (WLWH) specifically [29,30,31].
Throughout the pandemic, research has focused mostly on gender differences in regard to contracting SARS-CoV-2 and how biological sex may affect COVID-19 outcomes [32,33,34,35,36], with less attention paid to the different social and behavioral consequences emerging between men and women. Several studies have qualitatively examined the effects of the pandemic on peripartum women’s lives, including disruptions to prenatal care, anxiety during pregnancy, and postpartum experiences [37,38,39,40,41,42,43,44,45,46,47,48]. A few studies have discussed the potential impact of the pandemic on the increased risk of mental illness and domestic violence among WLWH [49, 50] and the challenges associated with taking antiretroviral therapy (ART) during the COVID-19 lockdown among WLWH , without conducting an in-depth analysis of the complex intersection of these factors. In this study, we aimed to qualitatively examine how WLWH have been impacted on multiple socioeconomic and health levels throughout the pandemic, including HIV-specific challenges related to retention in HIV care, ART adherence, and perceived COVID-19 vulnerability, as well as general experiences regarding mental health/social isolation, childcare, and financial/employment stability.
We conducted a qualitative study using semi-structured interview guides to facilitate one-on-one interviews with WLWH from June 2020–April 2021. The timeline for data collection allowed for recruitment at two different sites: University of Chicago Medicine (UCM), an academic medical center, and Howard Brown Health (HBH), a federally qualified health center (FQHC) in Chicago. It also allowed for a larger sample size and ensured we reached saturation of themes. Eligible participants included patients who had birth sex and gender identity of female and were living with HIV and received care at either UCM or HBH. Both institutions offer social work, case management, and linkage to behavioral health services and other resources for PLWH. These services were continued or expanded throughout the pandemic for PLWH who needed additional support. Eligibility criteria were confirmed by review of the participant’s electronic medical record (EMR). Research staff called potential participants and informed them of the study. If WLWH were willing to participate, researchers scheduled a time to conduct the interview. Ultimately, twenty-five WLWH consented to participate and were enrolled in the study.
All interviews were conducted via telephone or Zoom by trained research staff in a private and secure location. Participants provided informed consent prior to their participation and verbal permission to audio record their interview. No personally identifiable information (e.g., participant’s name) was collected on the audio recording. WLWH could choose to skip questions or stop their participation at any time, without penalty. Participants received $40 in the form of a Visa gift card, an online code for Amazon, or cash sent through an electronic payment application after completing the interview. Audio recordings were professionally transcribed and uploaded to Dedoose, a qualitative data analysis software, for analysis. This study was approved by the Institutional Review Board at the University of Chicago (approval no. 20-0883) and Howard Brown Health.
Rigor, validity, and reliability
To establish rigor, we developed our interview questions based on two established conceptual frameworks, minimizing the potential effect of research bias inherent in qualitative methodologies (Table 1). Interview questions were designed to capture information related to psychological and social stressors of the pandemic among WLWH. Questions were developed using the HIV and COVID-19 syndemic model  to explore potential social determinants of health among PLWH and the Health Disparity framework  to understand factors related to individual, patient-provider, and healthcare factors. Questions assessed the impact of the pandemic on childcare, financial/employment stability, mental health, and retention in HIV care among WLWH.
During data collection and analysis, researchers met routinely to discuss preliminary findings and make iterative improvements to ensure the main research questions were being addressed adequately within the interview responses. Researcher reflexivity was performed during both data collection and analysis, with the goal of highlighting participants’ viewpoints without any interference from our research team’s subjective interpretations or biases.
Transcripts were examined using thematic analysis. A preliminary codebook was developed to organize data into common themes related to experiences and perspectives of WLWH during the pandemic. This codebook underwent several iterative revisions based on emergence of themes during interviews. The finalized codebook was applied by the primary coder to an excerpt of transcripts, and the secondary coders coded a subset of the excerpts selected at random until all coders (N = 3) achieved an interrater reliability of Cohen’s kappa score ≥ 0.80, which indicates substantial agreement between coders on assessing themes . The research team was composed of two Infectious Diseases physicians, a research assistant professor, and three research assistants. Interviews were conducted by a graduate medical student, an undergraduate student, and a clinical research coordinator. The primary coder had extensive experience with conducting qualitative research studies and analyzing qualitative data. All coders who performed data analysis were trained and supported by qualitative research experts. Most divergences occurred due to omission, and upon review and revision by all coders, were quickly rectified to 100% agreement. Codes were then applied to all transcripts and were reviewed by all analysts for consensus.
The research team performed constant comparison by coding each transcript iteratively. We met often to discuss initial codes and to assess trends in coding and potential themes across transcripts. Dedoose was used to identify key themes based on clustering of code application. We ensured that each theme was distinct and had enough supporting data to be considered significant to our findings. Saturation of themes was determined when there was a high prevalence of code clustering and no emergence of new themes. The primary analyst organized the prevalent themes across interviews and presented the findings to the research team for consensus. Relevant quotations were selected to highlight each significant theme.
Of the total 25 WLWH interviewed, 18 (72.0%) identified as Black/African American; the median age was 39 (range 23–62); and 5 (20.0%) had been diagnosed with COVID-19 prior to their interview (Table 2). Each participant had varying experiences and reactions to the COVID-19 pandemic, but commonalities emerged among WLWH. Four significant themes were elicited and organized into HIV-related experiences during the pandemic (Disruptions to HIV Care; Perceived Heightened Vulnerability to COVID-19) and social/psychological stressors during the pandemic (Childcare and Financial/Employment Strains; Mental Health Concerns). Representative quotations were included to demonstrate the impact of these themes among WLWH.
HIV-related experiences: disruptions to HIV care; perceived heightened vulnerability to COVID-19
Disruptions to HIV care
16 participants reported that the COVID-19 pandemic had disrupted their HIV care (e.g., appointment cancellations, loss of provider, or ART non-adherence). Some participants cited telehealth and prescription delivery as facilitators to retention in care or ART adherence and did not experience any notable changes related to their HIV care. However, many women detailed how the pandemic resulted in HIV care physicians cancelling their appointments and challenges related to ART adherence:
“I just got denied on my prescription refill, for the first time throughout this whole pandemic. So, I called…to get an appointment, and my doctor has no appointments for the foreseeable future.” (ID 21)
“Before, everything [HIV care] was perfect. Everything was fine before. Since the pandemic, I have lost my specialist, so I have to find another one. He’s no longer there. And let’s see, it’s been harder with the visits.” (ID 17)
“Not for the better [how the pandemic has impacted retention in HIV care]. Because, like I said, since the corona’s been going on, my numbers [HIV viral load] have gone back up.” (ID 16)
Participants also mentioned avoiding their in-person HIV care appointments due to fear of getting COVID-19:
“I’m really afraid, really, to go in and out of hospitals now. So, I cancelled my appointment.” (ID 10)
Additionally, one woman described how the stress of the pandemic led to inconsistencies in her ART regimen:
“I did forget once to take my medicine, with everything that going’s on. It’s just been a lot. It’s been a lot for me to process, and a lot to deal with, trying to get into a new routine of things. So, sometimes, I just say, ‘Forget it [taking ART].’” (ID 17)
Conversely, one woman stated that the pandemic had forced her to prioritize her HIV care. Similarly, another woman credited the COVID-19 pandemic for her decision to seek treatment for her symptoms, which ultimately led to her HIV diagnosis and subsequent linkage to care:
“It [HIV care] had changed because I’m talking to myself, ‘Don’t you dare miss a dose. Don’t you dare, take it. Go take your medicine. Go eat. Go make sure. You gotta keep your levels up.’ I’m constantly talking to myself.” (ID 11)
“Maybe COVID contributed to me finding about this [HIV diagnosis], and not letting this get any further than what it was, and to the point where now I am in - I’m on a treatment program.” (ID 23)
Perceived heightened vulnerability to COVID-19
In addition to HIV care difficulties, 23 participants reported perceived heightened vulnerability to or fear of COVID-19. Seventeen participants directly expressed their concern that living with HIV made them more susceptible to either contracting and/or experiencing worse health outcomes from COVID-19 compared to those not living with HIV:
“I did have a lot of health scare at the beginning because I thought, because I’m immunocompromised that I would get sick.” (ID 21)
“It [HIV] made my fear [of COVID-19] more significant, because my status is not under control.” (ID 13)
“I knew for sure that I would get it [COVID-19]. I just knew for sure. I said, ‘I’m gonna get it because I’m fighting this thing [HIV]. It’s [COVID-19] gonna grab me. It’s gonna knock my immune system down.’…I thought for sure, I would be a person that caught it. No doubt, I really thought that.” (ID 11)
“I think I have to take more precautions because…I’m already vulnerable because my immune system is not that of an average person. It is already compromised. It’s already fighting against something [HIV]. So, with that being said, I think that makes me more vulnerable [to COVID-19].” (ID 17)
Although most participants expressed a high level of concern at some point during the pandemic, 5 participants described extreme fear of death and fatalistic thoughts related to acquiring COVID-19:
“I feel very kind of worried, not kind, very worried about getting it [COVID-19] by touching the wrong thing or you know, just making a mistake. And then, I could probably die. And I feel like I’m more at risk than other people, like even if I’m undetectable, I just feel like I would die.” (ID 18)
I’m big scared [of COVID-19], you know? I was just talking about that. I was like, ‘If I get it, I think I’d die.’ Because you know, that affects our immune system, and by me having HIV I’m already fighting that off, you know?” (ID 20)
“Those were the thoughts that kept entering my mind that I needed to get that ready [put affairs in order] because I most definitely was on my way out of here [going to die]. Because I’m thinking if I catch it [COVID-19], I’m not gonna live.” (ID 11)
Social/psychological stressors—childcare and financial/employment strains; mental health concerns
Childcare and financial/employment strains
Of the 18 women who mentioned their children during the interview, 6 assumed additional childcare responsibilities during the pandemic. Some mothers had adult children who no longer lived at home or required care, but many women described how they took on the role of helping their young children navigate the transition from in-person schooling to virtual/remote learning:
“I’m homeschooling my son because he’s unable to go in. We had the online learning that we were going through, but I have a child with special needs, so he needs more attention than that. So, I’m impacted in that way and I’m not able to go back to work.” (ID 9)
“Yeah, I was on [in charge of] childcare. I had to take my son out of daycare and then do home activities with him so that he can keep up when he does go back to school.” (ID 16)
Of the total 25 women interviewed, 11 reported experiencing increased financial strains as a result of the pandemic. However, most women stated that the pandemic had no impact on their financial stability, with one woman even mentioning that she had recently purchased a home because she had finally achieved sufficient financial security. 13 participants stated that the pandemic impacted their employment situation. Some women reported being able to work from home, which they considered a privilege during the tumultuous economic climate. Other participants reported losing their jobs, being forced to reduce their paid work hours, or increasing their amount of unpaid labor at home, further exacerbating their financial issues:
“I’m not employed at the time, but as far as financial, yes it [the pandemic] has [impacted finances]. Got behind on my rent and I caught up a little bit, but I’m not quite where I need to be.” (ID 8)
“But as far as income, yeah, my income is decreased because I can’t work every day. And so, now I’m, you know, it’s just basically surviving off of unemployment, which sucks.” (ID 24)
“Well, for a moment there, I wasn’t working. There was no help for me. Nobody’s said, ‘Well, you can come over here, here’s food over here, here’s somebody to help you with your light and gas bill. Well, here’s somebody to help you with your rent or whatever.’ There was no services…We just sick and we don’t have anything. We just don’t have it. And with a lot of the medications [ART], you have to eat.” (ID 11)
One woman noted how being unemployed served as a major stressor for her psychosocial health:
“I lost my job…And it felt like I was going crazy to get – my phone got cut off. You know? So, a lot of little things I’ve been through, to struggle with.” (ID 20)
Mental health concerns
Some women reported that the pandemic either had no effect on their mental health or a positive effect by presenting more time to reflect on and resolve issues. However, 16 participants reported increased anxiety and depression and other forms of psychological distress. Additionally, 17 women reported experiencing negative effects from social isolation at some point during the pandemic.
Women described how their anxiety began to manifest physically, with one stating:
“I think a couple of days, I was like, ‘I might need some medication for this’…because I think I went really two weeks straight with high anxiety…I even got so bad one day, I thought I couldn’t breathe…I thought I was having trouble breathing. And I had to talk myself off the mountain.” (ID 11)
A few participants noted how being at home and isolated from others led to increased depressive symptoms. One participant even described how the social isolation resulted in hospitalization:
“I would say so [mental health has been impacted by the pandemic]. More down than usual. And been at home more. So, it causes my depression to be a little heightened.” (ID 13)
“It [the pandemic] takes a toll on your psyche. Um, feeling you know, you get cabin fever or get a little stir-crazy because you feel like the walls are closing in and people who have anxiety being left alone with their thoughts with nothing else to do, mental health is definitely an issue.” (ID 24)
“It’s made me a little bit more depressed…Like I said, it [the pandemic] made me go into a depression. I had to go to the psych part of the hospital. Because once I was just in the house just constantly thinking and thinking, I just thought about that, and it just drives me up the wall.” (ID 16)
The interplay of different factors impacting the mental health of participants—HIV status, perceived heightened vulnerability to COVID-19, and social stressors—was summarized by one woman:
“It’s my mental health with the anxiety of, I don’t want it [COVID-19], I don’t need it due to a weakened immune system already. I feel like anything and everything can just automatically can attach to me because I already have health issues. I don’t need any more. So, yeah, when I hear more numbers are going up, when I hear more people are dying, when I hear them things, yeah, it affects a little bit of my mental health.” (ID 7)
Our study is unique in its overarching goal to qualitatively examine the multifactorial impacts of the COVID-19 pandemic on WLWH in the following areas: retention in HIV care, ART adherence, social/psychological stressors, mental health/social isolation, financial/employment stability, and childcare. Prior studies have focused on how the pandemic has affected WLWH’s mental health and safety [49, 50] or their HIV care , but we present comprehensive findings on several facets of socioeconomic, mental, and physical wellness that were affected by the pandemic. These data were collected over the course of 10 months from a large academic center and an FQHC in Chicago, demonstrating a lasting understanding of WLWH’s vantage points, including times of both peak COVID-19 incidence and relative stability. As a result, our findings can contribute to the existing literature surrounding the experiences of WLWH during the pandemic.
In our analysis, WLWH reported many commonalities during the COVID-19 pandemic that were related specifically to their HIV status. Many of the women in our study experienced disruptions to their HIV care, leading to fear of attending visits, cancelled appointments, or ART non-adherence, which has been seen in other studies of PLWH during the pandemic [2, 16, 51, 55,56,57,58,59]. WLWH also reported a high degree of perceived increased vulnerability to COVID-19, particularly at the beginning of the pandemic. Women assumed that having HIV would lead to a poor outcome should they get COVID-19, and some participants reported extreme beliefs that they would die from COVID-19. This concern has been voiced by PLWH in other studies as well [4, 15, 60, 61].
In terms of social stressors, a significant number of WLWH in our study reported increased financial/employment strains and childcare responsibilities as a result of the pandemic. Many women in our study were forced to reduce their paid work hours or lost their jobs completely, limiting their ability to pay rent and other bills. We have seen that women not living with HIV have experienced an exacerbation of existing gender disparities throughout the pandemic, including unequal division of childcare work even if men increased their pre-pandemic household contributions, as well as more transitions to unemployment or reduced work hours among women in general [20, 23, 59, 62,63,64,65,66,67,68]. Several WLWH undertook additional childcare tasks and reported being responsible for facilitating their children’s remote learning and/or taking care of their kids during the day while childcare centers were closed. These financial impacts, in combination with unanticipated unpaid additional labor at home, were reported to negatively affect the mental health of our participants.
Although PLWH and the general population have experienced psychological distress throughout the pandemic, psychiatric disorders remain prevalent for women and WLWH in particular. Many of our participants reported increased depression or anxiety and negative effects from social isolation due to the pandemic. There has been an excess of suicides among women but not men as a result of the psychological burden of COVID-19 within certain regions of the world . This gender difference in psychological responses to the pandemic is likely due to the heavier toll that COVID-19 has had on women and the lack of sociocultural support rather than gender-based differences in resilience .
These comorbidities, in addition to the social challenges imposed by the pandemic, likely complicate clinicians’ ability to provide coordinated HIV care to WLWH. Examining these factors together, the intersectionality of HIV status, gender, finances/employment, and mental health becomes critically important. During the pandemic, women who spent long hours on childcare or housework duties were more likely to report psychological distress; adapting their work patterns further increased this distress . Similarly, WLWH are more likely to experience depression if they are unemployed, have a financial burden, or suffer from a common opportunistic infection [71, 72]. Our qualitative analysis highlights the importance of creating psychosocial interventions that acknowledge how gender-based inequities may contribute to the mental and emotional distress experienced by WLWH. Higher stress, fewer active coping strategies, and less perceived social support have been associated with greater anxiety and depression symptoms among low-income and minority WLWH . This disparity is particularly relevant for our analysis, as a majority of the participants were Black/African American women who lived in low-income and medically underserved areas on the south side of Chicago.
The women in our analysis expressed how the pandemic had impacted their childcare responsibilities, mental health, and perceived vulnerability to COVID-19. Some studies have suggested focusing on intervention strategies that build resilience and alleviate the psychosocial burdens of stigma and depression among WLWH, particularly for those who are marginalized . Based on our findings, we recommend healthcare systems adopt strategies to better support WLWH throughout the pandemic and potential future crises. Efforts should include childcare assistance, access to affordable and quality mental health services, social support groups with other WLWH, and provision of educational materials by trusted HIV care providers to mitigate unfounded concerns of susceptibility to COVID-19.
This study has a few limitations. Participants were recruited from hospital/clinic sites (UCM, HBH), so our results may not transfer to WLWH who are not engaged in care. Nevertheless, we still saw a high degree of negative impacts of the pandemic among our study participants, and it is likely that those who are less engaged in the healthcare system may have similar or even more pronounced socioeconomic or psychological distress compared to the women in our analysis. The vast majority of interviews were conducted before vaccines were widely available and may not be transferable to later stages of the pandemic. However, we saw similarities in responses throughout the entire study period (June 2020–April 2021), indicating that these are enduring struggles and not initial reactions limited to the first few months of the pandemic. Public schools within Chicago remained in remote learning for the entire 2020–2021 school year, so even when the initial lockdown phase of the pandemic was over, the impacts on WLWH with children were pronounced. Additional research should seek to identify long-term effects of the COVID-19 pandemic on WLWH, particularly the potential psychosocial and economic ramifications among minority women. Future studies should also examine healthy coping mechanisms used by WLWH that may build resilience throughout the pandemic and during future crises.
We gained invaluable insight into how WLWH were challenged by and adapted to the COVID-19 pandemic, including its disruptive effects to their HIV care and mental health. During a period of elevated concern related to COVID-19 and its unique effects on women’s psychosocial and behavioral wellness, those living with HIV have the compounded burden of perceived heightened vulnerability and routine health management. Healthcare systems should utilize strategies and interventions that include childcare assistance, mental health services, support groups, and education from trusted HIV care providers to better support WLWH in social and clinical networks and to mitigate potential gender inequalities that may linger after the pandemic or even reoccur during future health crises.
Availability of data and materials
There is no contact available to request the data from this study. Data contain protected health information (PHI) and cannot be shared due to confidentiality concerns, as patients may be identifiable.
Coronavirus disease 2019
Human immunodeficiency virus
People living with HIV
Women living with HIV
Severe acute respiratory syndrome coronavirus 2
University of Chicago Medicine
Howard Brown Health
Tamuzi JL, Ayele BT, Shumba CS, Adetokunboh OO, Uwimana-Nicol J, Haile ZT, et al. Implications of COVID-19 in high burden countries for HIV/TB: a systematic review of evidence. BMC Infect Dis. 2020;20(1):744.
Rhodes SD, Mann-Jackson L, Alonzo J, Garcia M, Tanner AE, Smart BD, et al. A rapid qualitative assessment of the impact of the COVID-19 pandemic on a racially/ethnically diverse sample of gay, bisexual, and other men who have sex with men living with HIV in the US South. AIDS Behav. 2021;25(1):58–67.
Kuman Tunçel Ö, Pullukçu H, Erdem HA, Kurtaran B, Taşbakan SE, Taşbakan M. COVID-19-related anxiety in people living with HIV: an online cross-sectional study. Turk J Med Sci. 2020;50(8):1792–800.
Nitpolprasert C, Anand T, Phanuphak N, Reiss P, Ananworanich J, Peay HL. A qualitative study of the impact of coronavirus disease (COVID-19) on psychological and financial wellbeing and engagement in care among men who have sex with men living with HIV in Thailand. HIV Med. 2021.
Khan MS, Rego S, Rajal JB, Bond V, Fatima RK, Isani AK, et al. Mitigating the impact of COVID-19 on tuberculosis and HIV services: a cross-sectional survey of 669 health professionals in 64 low and middle-income countries. PLoS ONE. 2021;16(2): e0244936.
Wagner GJ, Wagner Z, Gizaw M, Saya U, MacCarthy S, Mukasa B, et al. Increased depression during COVID-19 lockdown associated with food insecurity and antiretroviral non-adherence among people living with HIV in Uganda. AIDS Behav. 2021:1–9.
Marbaniang I, Sangle S, Nimkar S, Zarekar K, Salvi S, Chavan A, et al. The burden of anxiety among people living with HIV during the COVID-19 pandemic in Pune, India. BMC Public Health. 2020;20(1):1598.
Gatechompol S, Avihingsanon A, Putcharoen O, Ruxrungtham K, Kuritzkes DR. COVID-19 and HIV infection co-pandemics and their impact: a review of the literature. AIDS Res Ther. 2021;18(1):28.
Do AN, Rosenberg ES, Sullivan PS, Beer L, Strine TW, Schulden JD, et al. Excess burden of depression among HIV-infected persons receiving medical care in the united states: data from the medical monitoring project and the behavioral risk factor surveillance system. PLoS ONE. 2014;9(3): e92842.
O’Cleirigh C, Magidson JF, Skeer MR, Mayer KH, Safren SA. Prevalence of psychiatric and substance abuse symptomatology among HIV-infected gay and bisexual men in HIV primary care. Psychosomatics. 2015;56(5):470–8.
Kendall CE, Wong J, Taljaard M, Glazier RH, Hogg W, Younger J, et al. A cross-sectional, population-based study measuring comorbidity among people living with HIV in Ontario. BMC Public Health. 2014;14:161.
Green TC, Kershaw T, Lin H, Heimer R, Goulet JL, Kraemer KL, et al. Patterns of drug use and abuse among aging adults with and without HIV: a latent class analysis of a US Veteran cohort. Drug Alcohol Depend. 2010;110(3):208–20.
Bing EG, Burnam MA, Longshore D, Fleishman JA, Sherbourne CD, London AS, et al. Psychiatric disorders and drug use among human immunodeficiency virus-infected adults in the United States. Arch Gen Psychiatry. 2001;58(8):721–8.
Krier S, Bozich C, Pompa R, Friedman MR. Assessing HIV-related stigma in healthcare settings in the era of the COVID-19 Pandemic, Pittsburgh, Pennsylvania. AIDS Behav. 2020;24(9):2483–5.
Hall A, Joseph O, Devlin S, Kerman J, Schmitt J, Ridgway JP, et al. 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. BMC Infect Dis. 2021;21(1):1066.
Ogueji IA. People newly diagnosed with HIV during the COVID-19 pandemic: a focus group study on the associated early biopsychosocial reactions. J HIV/AIDS Soc Serv. 2021;20(3):209–27.
Joseph OL, Hall A, Devlin SA, Kerman J, Schmitt J, McNulty MC, et al. 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. AIDS Care. 2022:1–8.
Nydegger LA, Hill MJ. Examining COVID-19 and HIV: the impact of intersectional stigma on short- and long-term health outcomes among African Americans. Int Soc Work. 2020;63(5):655–9.
Power K. The COVID-19 pandemic has increased the care burden of women and families. Sustain Sci Pract Policy. 2020;16(1):67–73.
Sevilla A, Smith S. Baby steps: the gender division of childcare during the COVID-19 pandemic. Oxford Rev Econ Policy. 2020:graa027.
Carli LL. Women, gender equality and COVID-19. Gend Manag Int J. 2020;35(7/8):647–55.
Chang W-H. Understanding the COVID-19 pandemic from a gender perspective. Taiwan J Obstet Gynecol. 2020;59(6):801–7.
Czymara CS, Langenkamp A, Cano T. Cause for concerns: gender inequality in experiencing the COVID-19 lockdown in Germany. Eur Soc. 2021;23(sup1):S68–81.
Herten-Crabb A, Wenham C. I was facilitating everybody else’s life. And mine had just ground to a halt: the COVID-19 pandemic and its impact on women in the UK. medRxiv. 2021:2021.03.12.21253136.
Connor J, Madhavan S, Mokashi M, Amanuel H, Johnson NR, Pace LE, et al. Health risks and outcomes that disproportionately affect women during the Covid-19 pandemic: a review. Soc Sci Med. 2020;266: 113364.
Maaravi Y, Heller B. Not all worries were created equal: the case of COVID-19 anxiety. Public Health. 2020;185:243–5.
Brooks SK, Webster RK, Smith LE, Woodland L, Wessely S, Greenberg N, et al. The psychological impact of quarantine and how to reduce it: rapid review of the evidence. Lancet. 2020;395(10227):912–20.
Taylor S. The psychology of pandemics: preparing for the next global outbreak of infectious disease. Newcastle upon Tyne: Cambridge Scholars Publishing; 2019. xvi, 158-xvi, p.
Cook JA, Burke-Miller JK, Steigman PJ, Schwartz RM, Hessol NA, Milam J, et al. Prevalence, comorbidity, and correlates of psychiatric and substance use disorders and associations with HIV risk behaviors in a multisite cohort of women living with HIV. AIDS Behav. 2018;22(10):3141–54.
Malee KM, Mellins CA, Huo Y, Tassiopoulos K, Smith R, Sirois PA, et al. Prevalence, incidence, and persistence of psychiatric and substance use disorders among mothers living with HIV. J Acquir Immune Defic Syndr. 2014;65(5):526–34.
Ogueji IA. Experiences and predictors of psychological distress in pregnant women living with HIV. Br J Health Psychol. 2021;26(3):882–901.
Bwire GM. Coronavirus: why men are more vulnerable to Covid-19 than women? SN Compr Clin Med. 2020;2(7):874–6.
Carrillo-Vega MF, Salinas-Escudero G, García-Peña C, Gutiérrez-Robledo LM, Parra-Rodríguez L. Early estimation of the risk factors for hospitalization and mortality by COVID-19 in Mexico. PLoS ONE. 2020;15(9): e0238905.
Giagulli VA, Guastamacchia E, Magrone T, Jirillo E, Lisco G, De Pergola G, et al. Worse progression of COVID-19 in men: is testosterone a key factor? Andrology. 2021;9(1):53–64.
Capuano A, Rossi F, Paolisso G. Covid-19 kills more men than women: an overview of possible reasons. Front Cardiovasc Med. 2020;7:131.
Rozenberg S, Vandromme J, Martin C. Are we equal in adversity? Does Covid-19 affect women and men differently? Maturitas. 2020;138:62–8.
Mizrak Sahin B, Kabakci EN. The experiences of pregnant women during the COVID-19 pandemic in Turkey: a qualitative study. Women Birth. 2021;34(2):162–9.
Freitas-Jesus JV, Rodrigues L, Surita FG. The experience of women infected by the COVID-19 during pregnancy in Brazil: a qualitative study protocol. Reprod Health. 2020;17(1):108.
Kumari A, Ranjan P, Sharma KA, Sahu A, Bharti J, Zangmo R, et al. Impact of COVID-19 on psychosocial functioning of peripartum women: a qualitative study comprising focus group discussions and in-depth interviews. Int J Gynaecol Obstet. 2021;152(3):321–7.
Onchonga D, Alfatafta H, Ngetich E, Makunda W. Health-seeking behaviour among pregnant women during the COVID-19 pandemic: a qualitative study. Heliyon. 2021;7(9): e07972.
Aydin R, Aktaş S. An investigation of women’s pregnancy experiences during the COVID-19 pandemic: a qualitative study. Int J Clin Pract. 2021;75(9): e14418.
Mortazavi F, Ghardashi F. The lived experiences of pregnant women during COVID-19 pandemic: a descriptive phenomenological study. BMC Pregnancy Childbirth. 2021;21(1):193.
Rice K, Williams S. Women’s postpartum experiences in Canada during the COVID-19 pandemic: a qualitative study. CMAJ Open. 2021;9(2):E556–62.
Preis H, Mahaffey B, Heiselman C, Lobel M. Vulnerability and resilience to pandemic-related stress among U.S. women pregnant at the start of the COVID-19 pandemic. Soc Sci Med. 2020;266:113348.
Gur RE, White LK, Waller R, Barzilay R, Moore TM, Kornfield S, et al. The disproportionate burden of the COVID-19 pandemic among pregnant black women. Psychiatry Res. 2020;293: 113475.
Corbett GA, Milne SJ, Hehir MP, Lindow SW, O’Connell MP. Health anxiety and behavioural changes of pregnant women during the COVID-19 pandemic. Eur J Obstet Gynecol Reprod Biol. 2020;249:96–7.
Durankuş F, Aksu E. Effects of the COVID-19 pandemic on anxiety and depressive symptoms in pregnant women: a preliminary study. J Matern Fetal Neonatal Med. 2020:1–7.
Lebel C, MacKinnon A, Bagshawe M, Tomfohr-Madsen L, Giesbrecht G. Elevated depression and anxiety symptoms among pregnant individuals during the COVID-19 pandemic. J Affect Disord. 2020;277:5–13.
Joska JA, Andersen L, Rabie S, Marais A, Ndwandwa ES, Wilson P, et al. COVID-19: increased risk to the mental health and safety of women living with HIV in South Africa. AIDS Behav. 2020;24(10):2751–3.
Closson K, Lee M, Gibbs A, Kaida A. When home is not a safe place: impacts of social distancing directives on women living with HIV. AIDS Behav. 2020;24(11):3017–9.
Nyashanu M, Chireshe R, Mushawa F, Ekpenyong MS. Exploring the challenges of women taking antiretroviral treatment during the COVID-19 pandemic lockdown in peri-urban Harare. Zimbabwe Int J Gynaecol Obstet. 2021;154(2):220–6.
Shiau S, Krause KD, Valera P, Swaminathan S, Halkitis PN. The burden of COVID-19 in people living with HIV: a syndemic perspective. AIDS Behav. 2020;24(8):2244–9.
Kilbourne AM, Switzer G, Hyman K, Crowley-Matoka M, Fine MJ. Advancing health disparities research within the health care system: a conceptual framework. Am J Public Health. 2006;96(12):2113–21.
McHugh ML. Interrater reliability: the kappa statistic. Biochem Med (Zagreb). 2012;22(3):276–82.
Linnemayr S, Jennings Mayo-Wilson L, Saya U, Wagner Z, MacCarthy S, Walukaga S, et al. HIV care experiences during the COVID-19 pandemic: mixed-methods telephone interviews with clinic-enrolled HIV-infected adults in Uganda. AIDS Behav. 2021;25(1):28–39.
Jaafari Z, Eybpoosh S, Sharifi H, Karamouzian M. Exploration of the impact of coronavirus disease 2019 on people living with HIV in Kerman, Iran: a qualitative study. J Assoc Nurses AIDS Care. 9000.
Sun S, Hou J, Chen Y, Lu Y, Brown L, Operario D. Challenges to HIV care and psychological health during the COVID-19 pandemic among people living with HIV in China. AIDS Behav. 2020;24(10):2764–5.
Hochstatter KR, Akhtar WZ, Dietz S, Pe-Romashko K, Gustafson DH, Shah DV, et al. Potential Influences of the COVID-19 pandemic on drug use and HIV care among people living with HIV and substance use disorders: experience from a pilot mHealth intervention. AIDS Behav. 2021;25(2):354–9.
Fodor É, Gregor A, Koltai J, Kováts E. The impact of COVID-19 on the gender division of childcare work in Hungary. Eur Soc. 2021;23(sup1):S95–110.
van der Vegt I, Kleinberg B, editors. Women worry about family, men about the economy: gender differences in emotional responses to COVID-19. Cham: Springer; 2020.
Karjadi T, Maria S, Yunihastuti E, Widhani A, Kurniati N, Imran D. Knowledge, attitude, behavior, and socioeconomic conditions of people living with HIV in Indonesia during the COVID-19 pandemic: a cross-sectional study. HIV/AIDS Res Palliative Care. 2021;13:1045–54.
Reichelt M, Makovi K, Sargsyan A. The impact of COVID-19 on gender inequality in the labor market and gender-role attitudes. Eur Soc. 2021;23(sup1):S228–45.
Hipp L, Bünning M. Parenthood as a driver of increased gender inequality during COVID-19? Exploratory evidence from Germany. Eur Soc. 2021;23(sup1):S658–73.
Farré L, Fawaz Y, González L, Graves J. Gender inequality in paid and unpaid work during Covid-19 times. Rev Income Wealth. n/a(n/a).
Ahinkorah BO, Hagan JE Jr, Ameyaw EK, Seidu A-A, Schack T. COVID-19 pandemic worsening gender inequalities for women and girls in Sub-Saharan Africa. Front Glob Womens Health. 2021;2:686984.
Landivar LC, Ruppanner L, Scarborough WJ, Collins C. Early signs indicate that COVID-19 is exacerbating gender inequality in the labor force. Socius. 2020;6:2378023120947997.
Collins C, Landivar LC, Ruppanner L, Scarborough WJ. COVID-19 and the gender gap in work hours. Gend Work Organ. 2021;28(S1):101–12.
Xue B, McMunn A. Gender differences in unpaid care work and psychological distress in the UK Covid-19 lockdown. PLoS ONE. 2021;16(3): e0247959.
Nomura S, Kawashima T, Yoneoka D, Tanoue Y, Eguchi A, Gilmour S, et al. Trends in suicide in Japan by gender during the COVID-19 pandemic, up to September 2020. Psychiatry Res. 2021;295: 113622.
Laufer A, Shechory BM. Gender differences in the reaction to COVID-19. Women Health. 2021;61(8):800–10.
Yousuf A, Musa R, Isa MLM, Arifin SRM. Anxiety and depression among women living with HIV: prevalence and correlations. Clin Pract Epidemiol Ment Health. 2020;16:59–66.
Benoit AC, Light L, Burchell AN, Gardner S, Rourke SB, Wobeser W, et al. Demographic and clinical factors correlating with high levels of psychological distress in HIV-positive women living in Ontario, Canada. AIDS Care. 2014;26(6):694–701.
Catz SL, Gore-Felton C, McClure JB. Psychological distress among minority and low-income women living with HIV. Behav Med. 2002;28(2):53–60.
Fletcher FE, Sherwood NR, Rice WS, Yigit I, Ross SN, Wilson TE, et al. Resilience and HIV treatment outcomes among women living with HIV in the United States: a mixed-methods analysis. AIDS Patient Care STDS. 2020;34(8):356–66.
We thank the study participants for their contributions to understanding how women living with HIV were impacted by the COVID-19 pandemic.
This study was supported by the National Institutes of Health grant 1K23MH121190-01 (PI: Jessica Ridgway) and the National Institutes of Mental Health grant 5R03MH121226-02 (PI: Jessica Ridgway). Moira McNulty was supported by the National Institute of Mental Health (K23MH118969). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The funder did not participate in designing the study, collecting, analyzing, or interpreting data, writing the manuscript, or submitting for publication.
Ethics approval and consent to participate
Approval for this analysis was obtained from the University of Chicago Institutional Review Board and Howard Brown Health Institutional Review Board. We created a consent form that explained the nature of the study and the risks and benefits involved. The consent form was approved by our ethics committee and each participant reviewed it. We obtained informed consent prior to each interview. All participants provided verbal permission to record their interview. All methods were carried out in accordance with relevant guidelines and regulations.
Consent to publish
Not applicable, no identifying information is included.
The authors have no relevant financial or non-financial interests to disclose.
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
About this article
Cite this article
Devlin, S.A., Johnson, A.K., McNulty, M.C. et al. “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. BMC Women's Health 22, 218 (2022). https://doi.org/10.1186/s12905-022-01812-z
- Women living with HIV
- Gender disparities