“Did I get into the twilight zone somehow?”: sexual and gender minority cancer caregiver experiences during COVID
Abstract
Introduction
The COVID-19 pandemic created new challenges for cancer patients and caregivers. Little is known about the confluence of the pandemic and people with multiple marginalized identities, such as those in the Sexual and Gender Minority (SGM) community.
Methods
We conducted a mixed-methods pilot study using semi-structured interviews to elicit experiences of cancer among a diverse population of SGM patients and caregivers and a matched set of cisgender heterosexual (cishet) individuals. Here, we present qualitative findings focused on caregiver experiences as ascertained from the broader study.
Results
We discovered differences between SGM and cishet caregiving experiences, with SGM caregivers reporting less comfort in the cancer center environment; dissatisfaction with patient–provider communication; feeling excluded from their loved ones’ care; and increased social isolation resulting from the caregiver experience. SGM and cishet caregivers described the detrimental impact of the pandemic.
Conclusion
Our data suggest SGM caregivers experience additional burdens to cancer caregiving when compared to cishet peers. Although SGM and cishet caregivers reported challenges stemming from the COVID-19 pandemic, challenges appeared greater and more acute for SGM caregivers. Pandemic-related findings point to overall gaps in SGM cancer caregiver supports that may be remedied by additional research and targeted intervention development.
Keywords: Disparities, Sexual and gender minorities, COVID, Caregivers
Introduction
The COVID-19 pandemic changed cancer care delivery, creating new challenges for informal caregivers who provide day-to-day complex care for cancer patients. Cancer caregiving is stressful, entailing tremendous emotional and physical investment [1, 2]. Cancer caregivers are often tasked with new family, domestic, and/or financial responsibilities, while providing care and support for loved ones experiencing pain and discomfort from cancer treatment [3–6]. Visitation restrictions and shelter in-place orders implemented to reduce COVID transmission posed stressful new challenges for this predominantly lay and unpaid cancer care workforce [7].
Members of the sexual and gender minority (SGM) community—those who identity as lesbian, gay, bisexual, transgender, queer, intersex, or asexual—may face additional stressors as cancer caregivers. The SGM caregiving community is demographically unique when compared to cisgender heterosexual (cishet) caregivers [8]. As partnerships and social support networks are distinctive in the SGM population, SGM caregivers are often younger [9], ‘chosen family’ rather than biological family or a spouse [10]. “Interdependence of stress” is evident between partnered SGM cancer patients and informal caregivers and considerably less pronounced in heterosexual patient/caregiver equivalents [11]. This is a troubling finding given stress’s predictive power in poor health-related quality of life and mortality [12, 13]. Furthermore, SGM caregivers often have multiple minoritized identities [14, 15], as do the patients for whom they provide care, and often reported previous medical experiences that may make navigating healthcare settings on behalf of a loved one more stressful or complicated [16]. Feelings of discomfort and lack of belonging are frequently noted by SGM patients and caregivers in healthcare settings [17, 18].
In this article, we discuss qualitative findings regarding cancer caregiver experiences, derived from a broader mixed-methods pilot study conducted in the Southwestern USA. The study, initiated at the onset of the COVID pandemic, was designed to assess gaps in SGM cancer care and cancer caregiving, comparing the experiences of SGM and cishet patients and caregivers. Overall methods and findings from the broader mixed-methods study with both cancer patients and caregivers have been published previously [19]. Here, we present a deeper analysis of caregivers’ overall experiences of providing care, within the context of the COVID-19 pandemic and consider ways in which the pandemic highlighted caregiver support and navigation challenges for SGM and cishet caregivers.
Methods
As described previously, SGM patients and their primary cancer caregivers, followed by cishet patients and caregivers, were recruited from a cancer center in the Southwestern USA for an ecological theory-informed multi-methods study assessing quality of life and experiences of cancer and survivorship care. All participants were individually consented. In the present paper, we describe cancer caregiver experiences via data collected through semi-structured interviews that lasted an average of 58 minutes and were conducted at the onset of the pandemic (August 2020–August 2021). Interview questions elicited information on the overall caregiving experience, as well as the pandemic’s impact on caregiver experiences (e.g., “How has COVID impacted you and your loved one’s quality of life, treatment, and recovery experience?”). The topic of COVID was the focus of many responses to questions we posed about the “most challenging aspects of caregiving” and “ability to seek support as a caregiver.”
Interviews were digitally recorded and transcribed. A small coding team (comprised of 2 individuals) conducted thematic analysis using Dedoose [20], meeting with the larger team (comprised of an additional 4 individuals) for iterative analysis of codes, comparing and contrasting codes, grouping similar content into broader themes, and linkages at individual, dyadic, and cross-dyadic levels. Recurring themes were highlighted and are presented as follows. A description of the codes used and their definitions can be found in Table 1. The study was reviewed and approved by the UNM-HRRC IRB [#20-385].
Table 1.
Summary of qualitative codes
| Code | Sub-Code(s) | Description(s) |
|---|---|---|
| Caregiver roles |
Health care support Emotional support Advocacy |
The role(s) the caregiver had during their loved one’s cancer experience |
| Cancer clinic |
Current Future |
Environment of the cancer center presently and desired future environment |
| Caregiver support |
Physical needs Quality of life Social support Lack of general support |
Various aspects of support for caregivers or the lack thereof |
| COVID-19 cancer |
Cancer during COVID pandemic Cancer outside of the COVID pandemic |
Impact that the pandemic had on treatment and/or follow-up care Diagnosis/treatment/recovery outside the confines of the pandemic |
| COVID-19 general | None | Impact of the pandemic on daily life including social support |
| Future interventions | Interventions for SGM Caregivers | Suggestions for targeted interventions for SGM caregivers |
Results
We interviewed 16 caregivers (8 SGM, 8 Cishet). Mean age was 71.5 years, 87.5% identified as white, and 44% had completed their education with a college degree or less, with the remainder holding a graduate/professional degree. Sexual and gender identity as well as other demographic data were collected with a quantitative survey in REDCap. The survey was administered to all participants prior to their interview.
Differing experiences of SGM and cishet caregivers
At the start of cancer treatment, SGM caregivers described more discomfort and concern than did their cishet caregiver counterparts. Many SGM caregivers indicated some level of medical distrust and/or trauma from previous experiences that continued to influence their interactions with the healthcare system when they became a caregiver for a loved one. One woman told us, “I remember during the ‘80 s when the AIDS epidemic was happening and I had many friends pass away at that time. Everybody was afraid. It was kind of a mini-pandemic like this. People were afraid to touch anybody or be with anybody and ostracized people.” (Cisgender, Lesbian Caregiver). Another explained, “During AIDS, they wanted to put gay people in camps. That’s what these people…want to do….So, yeah, I’m always looking over my shoulder.” (Cisgender, Gay Caregiver).
Such experiences prompted a number of SGM caregivers to fear disclosure of their SGM status when they entered the cancer caregiving realm: “The fact that it’s a system you’re not familiar with. I think I felt a kind of vulnerability for both of us, we were just kind of scared.” (Cisgender, Bisexual Caregiver). Self-identifying as a member of the SGM community to a medical professional is sometimes perceived as a delicate balance of sharing relevant information and avoiding potential stigmatization. The wife of a lesbian patient reported feeling excluded from the initial visit and decision-making process: “I didn’t feel seen. I kept trying to connect with the doctor. in a way that was sort of like validate me; acknowledge me…It made me angry….I shouldn’t have had to work harder than anybody else in that room to say, ‘Hey, look at me. Hey, pay attention to me.’” (Cisgender, Lesbian Caregiver).
Concerns about discrimination and lack of trust compounded distress. One caregiver, who accompanied her wife discussed how they felt when negotiating challenging relationships with care team members, “…At some point, I did feel maybe he [the oncologist] was treating us so meanly…because we were lesbians.” (Cisgender, Lesbian Caregiver). The challenges inherent in this core cancer care relationship catalyzed additional fears when the surgeon she and her partner had established a trusting relationship with informed them that he might not be the one to do the needed procedure: “…at the beginning of COVID, he said, “They told all the doctors that they could be pulled to the emergency room at any time. He said he might not be able to be the one doing the surgery, and we sure didn’t want anybody else.” (Cisgender, Lesbian Caregiver).
Cishet caregivers described these initial experiences differently. One described accompanying her husband at his first appointment as “a surprisingly pleasant experience…that was the time they had a cellist playing in the lobby. I thought, ‘Wow, this is really something.’” (Cisgender, Heterosexual Caregiver #7). Concerns tended to center on differing opinions and treatment rather than provider communication and inclusion. In one such ordeal, a caregiver for his wife explained, “As tough as that [the chemotherapy] was on her, the staff were just great. We were so pleased. Not only that, but the physical surroundings of the cancer center are just so pleasant, so beautiful and quiet and everyone seemed caring.” (Cisgender, Heterosexual Caregiver #4).
General caregiving experiences during COVID-19
Even though we saw explicit differences in the concerns and experiences of cancer caregiving, the pandemic had an equalizing effect on caregivers, creating new challenges for both SGM and cishet caregivers. One caregiver described her incredulity: “This cancer thing has turned our lives upside down. Things that were so quote-unquote normal, first of all, they don’t exist anymore—not in that same shape. Secondarily, with the pandemic on top of it, it’s just like, ‘Did I get into the Twilight Zone somehow?’” (Cisgender, Lesbian Caregiver). The same caregiver described the double impact of a cancer diagnosis and the pandemic on social isolation: “Part of it is the pandemic with restaurants being closed, theaters. Everything is closed. Even if you want to go out, where is there to go? Nowhere. Our normality had been changed. [Cancer] just added to it, significantly.” (Cisgender, Lesbian Caregiver). Closure of spaces, such as those described, that are comfortable for minoritized communities, are commonly known as “third-spaces” and have historically played a critical role in the formation of support systems for SGM individuals. Therefore, their loss was felt intensely by SGM caregivers.
All caregivers expressed concerns and frustration stemming from strict COVID protocols to obtain necessary medical care. One SGM caregiver told us, “I couldn’t even go into—there was no waiting room or nothing. I literally dropped her off at the curb and picked her up there as well. Even from the surgery, there was a place where I would pick her up after her surgery.” (Cisgender, Lesbian Caregiver). Another described: Because of the pandemic, I was not allowed in. My job was to get him there and to pick him up and bring him home, until he was able to actually drive himself. I did talk to him afterward, to find out what happened, what did the doctor say, but I was not in the room for the experience.” (Transgender, Queer Caregiver). A third feared her loved one would forgo treatment: “…right at the same time that they closed the hospitals and started all the new rules at the hospital….she could have no family, nobody… She said she wasn’t going to have the surgery.” (Cisgender, Lesbian Caregiver). Cishet caregivers experienced similar barriers to care, as one caregiver spoke of an emergency situation, saying, “What was really bad was when I had to take him to the emergency room and drop him off at the door. That was terrible.” (Cisgender, Heterosexual Caregiver #7).
COVID-19 & changes in caregiver roles
Caregivers described varying reactions to the ways in which the pandemic created social isolation. One caregiver explained being unable to take advantage of the respite offered by other family members: “They would’ve come, but then by the time I needed help the COVID stuff was in place and they couldn’t come and help.” (Cisgender, Lesbian Caregiver). For another, positive changes resulted from intense closeness during their loved one’s cancer- and pandemic-related care, deepening their relationship: “You have the range of human emotion in that intense environment, and it’s just a very humanizing experience. Maybe it put the pandemic in perspective.” (Cisgender, Bisexual Caregiver).
COVID-19 influences on cancer treatment
Beyond the removal of caregivers from cancer centers and decision-making meetings, the COVID-19 pandemic affected cancer care delivery. One person explained: “She had to get her COVID test. Even though we have both been vaccinated she still has to do that and then the quarantine until the day of the operation. It’s getting harder and harder to get out to the doctors.” (Cisgender, Heterosexual Caregiver #6). Another described pandemic alterations to their loved one’s treatment plan after being discharged from the hospital, necessitating intensive in-home care: “He came right home…They didn’t want to send him to rehab because of the pandemic. They sent him home when they probably wouldn’t have. That required a lot from me…but it was just a lot for me to be the major caregiver at that time.” (Cisgender, Heterosexual Caregiver #7).
COVID-19 barriers to caregiver health
Like the patients themselves, caregivers were impacted by lack of access to healthcare. One said: “I didn’t have any care. I got one appointment with a rheumatologist. I might have seen her twice, but then COVID happened, and nobody got to see any doctor, at least I didn’t.” (Cisgender, Heterosexual Caregiver #8). Another feared seeking treatment after an injury lest they expose their loved one to COVID: “I hurt myself. I probably tore a ligament in my hip, but between COVID…I just didn’t feel like I could expose myself because of [patient name] to go to the doctor, so I limped around for three months.” (Cisgender, Lesbian Caregiver).
Discussion
Results presented here, a subset of a broader mixed-methods study conducted within the context of the COVID-19 pandemic, document adverse effects of pandemic-related policies, and realities of an unpaid caregiving workforce. Themes drawn from caregiver interviews corroborate findings from previous studies in which caregivers reported heightened caregiving stresses due to their inabilities to perform complex supportive caretaking roles within the context of care visits [21], engage in shared cancer care decision-making, and seek help for their own healthcare utilization due to concerns of contracting COVID-19 while providing care for someone who was immunocompromised due to cancer [6, 7, 22–24].
Beyond this, our results highlight the needs of minoritized SGM cancer caregivers both within and beyond perturbations, like the COVID-19 pandemic. Compared to their cishet peers, SGM caregivers we interviewed expressed more trepidation entering the cancer center, concerns about their loved one’s cancer care, reported incidents of stigma and discrimination, and felt more isolated.
Previous studies have documented the importance of third-places, spaces where people can gather and socialize outside of the home or work setting, for members of the SGM population. These spaces hold heightened importance for the historically marginalized SGM community because they foster a sense of community and oftentimes replace the biological family support that is lacking as a result of familial rejection after ‘coming out’ [25]. A recent article on SGM experiences during the pandemic highlighted the unique role that third-spaces hold for SGM individuals and documented notable mental health declines for SGM individuals during the pandemic [26]. Additionally, a recent review article suggested that the isolation, fear, and stress of the pandemic mirrored some of the experiences that SGM individuals had during the HIV/AIDS epidemic [27]. These prior experiences and deepened awareness of a worldwide health crisis likely shaped how caregivers of SGM patients approached living in lockdown, seeking medical care and trying to retain their self-identities. Such disruptions likely influenced caregivers’ increased isolation and awareness of lack of adequate support.
Adverse caregiving experiences exacerbated by pandemic-related stress emphasize the need to address multi-level factors in SGM cancer caregiver support. Based on SGM caregiver experiences, we propose (1) staff and oncology provider training in SGM cultural competence; (2) cancer center antidiscrimination policies and environmental modifications to encourage SGM patient and caregiver safety and belonging; and (3) patient and caregiver-focused resources to address the double burden of cancer and anti-SGM sentiment during care seeking [11, 19, 28].
The limitations of this study include the somewhat small and homogenous sample of SGM and cishet caregivers resulting from our inability to recruit diverse patient/caregiver populations due to pandemic lockdown and overburdened cancer care delivery system. As a consequence, study participants were predominately white and middle class. We suggest that caregiver concerns described in this paper are likely more pronounced in gender diverse, transgender populations, as well as those with multiple minoritized statuses as racial/ethnic minorities, rural residents, and/or non-English speakers [29]. Even so, our findings indicate a need to improve specific supports for SGM caregivers, enhance multimodal forms of patient/caregiver/provider communication, and support all caregivers during the continued exacerbation of challenges the pandemic has posed.
Acknowledgements
This research used services provided by the Behavioral Measurement and Population Science Shared Resource and the Biostatistics Shared Resource, facilities supported by the State of New Mexico and a University of New Mexico Comprehensive Cancer Center NCI-funded grant, P30CA118100. We also wish to acknowledge Ellen Burgess for her role in recruitment and data collection.
Author contributions
MK conceived and designed the study. MK and SAJ collected and analyzed the data. KJ, LAB, and ND supported the analysis and interpretation of results. SAJ, MK, KJ and AWFP wrote the main manuscript text. All authors reviewed and edited the final manuscript.
Funding
This work was supported by an American Cancer Society Institutional Research Grant ACS-IRG 17-178-22 and the UNM Comprehensive Cancer Center Support Grant under Grant NCI P30CA118100.
Data availability
The data that support the findings of this study are available upon reasonable request from the corresponding author [SAJ]. The data are not publicly available due to efforts to protect participant privacy.
Declarations
Conflict of interest
The authors report there are no competing interests to declare.
Footnotes
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The data that support the findings of this study are available upon reasonable request from the corresponding author [SAJ]. The data are not publicly available due to efforts to protect participant privacy.