1. Introduction

Long COVID is defined as the persistence of symptoms three or more months after infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2/COVID-19) occurring in a “continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems” [1]. Estimates suggest that a number of cases are increasing with at least 10% of COVID-19 infections leading to Long COVID, and over 400 million individuals worldwide affected [2]. With over 200 symptoms associated with Long COVID—including brain fog, fatigue, and shortness of breath—scientific knowledge about this illness is still developing. In many cases, medical action is trailing behind patient-led research initiated to fill gaps in care [3].

Beyond the medical research exploring causes, symptoms, and treatments—a growing body of research is documenting the economic and social implications of this relatively new health condition. A number of studies estimate the macrolevel impact of Long COVID on labor force participation, pension contributions, and health system demand [4]. Public health research documents negative changes in health-related quality of life for people with Long COVID (PwLC), particularly in terms of fatigue, concentration difficulties, and dyspnea, which impact PwLC’s ability to perform usual activities and contribute to anxiety [5, 6]. One review found that most studies with PwLC reported some degree of social and family-life impairment, long absence periods off work, and loss of employment (5). Research further documents the struggles PwLC face accessing healthcare, due to a lack of appropriate health services, and medical gaslighting–defined as when a healthcare professional dismisses or invalidates a patient’s concerns or symptoms without explanation [7]. Gaps in information and services related to Long COVID have in turn placed responsibility for advocacy and research with PwLC, as well as created ample opportunities for the proliferation of misinformation and unverified treatments [8].

To date, only a handful of studies have considered the effects of Long COVID on caregiving (defined here as the unpaid care work provided in the home or community by family and friends). While there is a growing literature on caregiver experiences during the initial years of the pandemic, little of this considers the long-term and ongoing effects on caregivers and people with disabilities [9]. Kwon estimates the costs of Long COVID in terms of unpaid care work in the UK to be £2.6–£7.0 billion due to the reduced ability of those with Long COVID to take on caregiving tasks [10]. In a qualitative study documenting individual lived experience, Harrison and colleagues (2024) briefly explore the relationships between experiences of patienthood and parenthood among PwLC. Such nascent research points to the effects of Long COVID on caregiving within households in terms of reduced capacity of PwLC to undertake care tasks and increased needs for caregiving for PwLC. We seek to contribute to this limited but growing field of study through qualitative analysis of interviews with PwLC and caregivers living in British Columbia (BC), Canada, exploring how Long COVID affected their care-related labor.

We apply a feminist critical disability studies perspective, which conceptualizes disability as more than a medical diagnosis of impairments, but as the result of complex interactions between physical or mental differences, social understandings of them, and institutional and physical structures [11]. This perspective challenges the positioning of disabilities as a personal tragedy or responsibility and instead seeks to understand the systems that stigmatize certain kinds of bodies [12]. Critical disability scholarship documents how disability is generally framed as a personal or family problem to be dealt with in the private sphere and, if it is addressed in broader society, such support is positioned as charity not justice. For example, Mauldin et al. note that during the first 2 years of the COVID-19 pandemic, people with disabilities were seen as less deserving of protection from infection and care if they got sick, with high rates of both incidents and deaths in congregated living arrangements for people with disabilities [13]. In addition to documenting such structural violence, critical disability studies situate disability in the contexts of rights and exclusions, revealing discriminatory attitudes and practices directed at people with disabilities, and opportunities to transform them [14].

A key source of stigma toward people with disabilities relates to their dependence on both formal and informal care [15]. Those living with disability often have unique care needs, compared to those of the general population, and are consequently positioned as a burden on others and the health system, or as recipients of charity. Analysis that focuses on economic and health systems costs of a particular health condition can reinforce this positioning of disability, as do neoliberal norms that celebrate self-sufficiency and individualized gains [12]. Critical disability scholars illustrate the contradictions embedded in such ableist ideals given that we all benefit directly from care (particularly as children, when we are ill, and as we age) and indirectly in terms of the care provided to others (i.e., one parent’s childcare work enables the other parent to engage in paid employment or recreation) [16].

Such discussions overlap with feminist care economy and ethics of care literature which posits that care is essential to the functioning of social, economic, and political systems [17]. This literature documents how care provision—whether formal or informal, paid or unpaid—is generally devalued and feminized within neoliberal capitalist economies [18]. Paid care providers, 80% of whom are women globally, are often exploited and underpaid, and informal caregivers (those who care for others voluntarily in the private sphere) are expected to do so at their own costs, with little recognition or support [19]. When states decrease or refuse to invest in social programs, like health, child, or elder care, they download care responsibility onto individuals (most often women) who incur costs, such as lost employment and opportunities, as well as increase caregivers’ risk of isolation and poor mental health. During the first few months of the COVID-19 pandemic, unpaid care work increased exponentially due to school and childcare closures, as well as reduced social and health services, forcing unprecedented numbers of women out of employment, with little to no support from the state [20]. In Canada, where this study was conducted, unpaid caregivers provide 75% of healthcare, but are rarely recognized in health systems policy or analysis [21]. Feminist care economy and ethics of care literature center the contributions of caregivers to health, social, and economic systems.

However, feminist scholarship on care has also been critiqued for rendering the experiences of people needing care—such as people with disabilities—invisible and/or positioning them as care burdens without recognizing how such terminology can contribute to stigmatization and disempowerment [22]. Critical disability scholarship further challenges conceptualizations of care as an inherent “good,” and the tendency in some literature to present people with disabilities as passive care burdens. Disability scholars note that care providers can exercise substantial, potentially coercive and violent, power over those with disabilities. This “dark side of care” needs to be recognized as does the importance of the autonomy to people with disabilities [23].

Davy engages with these tensions through a relational approach to care and disability, pointing out that critical disability and feminist scholarship both recognize the inherent condition of human interdependence and the universal need for care [11]. Many people with disabilities are also caregivers, with disability particularly intersecting with social positions related to parenthood. Through relational concepts of the self, feminist disability scholars normalize dependency and vulnerability as necessary features of being human, while also recognizing the importance of individual autonomy to projects for empowerment [11]. A relational understanding of the lived experience of disability and care includes recognizing that people with disablities and their caregivers are often rendered invisible and/or vulnerable, but for different but related reasons, as well as acknowledging care as a vehicle of empowerment for both those giving and receiving. From this perspective, caregiver and care receiver are interdependent and mutually supportive, countering the discourse of negative dependency created by broader norms and social policies [25]. Here, we adopt this critical relational approach, including both PwLC and caregivers in our research to explore lived experiences of Long COVID and caregiving. Our aim is to document how Long COVID is affecting caregiving in the home to inform supportive health and care policy responses.

2. Materials and Methods

This study was conducted in BC, Canada, in 2023. At the time, about one in nine (11.7%) of the Canadian adult population reported experiencing Long COVID, representing 3.5 million Canadians [24]. Ethical approval for this study was provided by Simon Fraser University Research Ethics Board (File # 30001542), and all research was conducted in accordance with the Declaration of Helsinki.

We interviewed 30 PwLC and nine caregivers of PwLC between March 29, 2023, and July 11, 2023. We recruited participants through the BC COVID Long-Haulers Facebook group, Family Caregivers of BC mailing list, and the Reach BC platform which connects researchers with interested research participants. All participants provided written informed consent. Interested participants first completed a screening survey in which they provided demographic information which was in turn used to maximize representation across priority characteristics such as gender and age (see Table 1 for demographics of participants). All respondents were based in BC, Canada. The interviews were conducted virtually by one or two authors.

The recordings from the interviews were imported into NVivo and analyzed using reflexive thematic analysis [26]. Two authors first reviewed the transcripts to identify candidate codes. They then compared these and mapped them into agreed-upon themes (Table 2). Themes were shared with all the authors to refine and define clearly. Two authors then each coded the same five transcripts and compared their coding, further refining the themes and codes. They then each coded the remaining transcripts, frequently consulting with each other and the other authors to ensure consistency and rigor. We shared our analysis with research participants through two virtual workshops, during which time we invited feedback and discussion to deepen our understanding of the lived experience of Long COVID.

People with disabilities have rightly critiqued researchers and others for claiming to speak for them and using research with them to advance their own careers [16]. While one of the authors is a PwLC, the rest do not live with Long COVID and are able-bodied. We recognize that our knowledge of Long COVID and ability to envision transformative change is limited by our privilege and so have sought to center the experiences of the PwLC who participated in this research. We further recognize the power relationship inherent in the research process as we interrupt the lived experiences of those who are not only living with Long COVID, but in many cases experience other inequities related to economic status, gender, race, and other social locations. We have attempted to address this power imbalance by having many of the interviews conducted by the author with Long COVID, sharing preliminary findings through workshops and events to invite input from PwLC and their caregivers, and by continuing to reflect on our own positionality.

3. Results

4. Discussion

A number of studies have noted the importance of qualitative research on Long COVID which documents experiences of patienthood from a critical perspective [27, 28]. We have advanced this area of research to include experiences of caregiving, recognizing that a better understanding of caregivers’ experiences (considering caregivers provide the majority of healthcare support) is instrumental in developing effective policies and interventions [9]. In doing so, we add to the sparse literature on care and Long COVID, moving beyond accounts of health system costs and reduced labor force participation to document the lived experiences of PwLC and caregivers. Their accounts describe profound effects of Long COVID on caregiving in the household. While many of these effects—such as other household members filling care gaps and facilitating access to medical services—are similar to those experienced among those with disabling health conditions in general, the novel nature of Long COVID also creates unique effects on household caregiving. PwLC particularly note how brain fog and exhaustion negatively affected their ability to complete household care tasks, self-care, and childcare. This resulted in a shift in mental load related to caregiving. Lack of information about Long COVID creates a particularly heavy burden on PwLC and caregivers left to find this information themselves, while medical gaslighting and lack of awareness about Long COVID generates demand for emotional labor.

Feminist disability studies highlight how experiences of disability interact with the gendered nature of caregiving. In Canada, women typically do two to three times more care work within households. This work costs time, has financial implications, and can negatively impact mental and physical health, but it does not have to. Health and social policies can protect both caregivers and the people they care for from such negative implications [29]. As most of the participating PwLC were women (23 out of 30), in the parental age range, their narratives highlighted how, due to feelings of responsibilities as mothers, they pushed themselves, often at the cost of their own health, to provide care. Shifting abilities in turn shaped their roles and visions of their own identities as parents. A number also notes how men in their households were often required to take on more caregiving work than they were accustomed to. Some men caregivers, for the first time, negotiated a challenging balance between work and family responsibilities. Experiences of disability in the household created opportunities to renegotiate care roles, with men caregivers taking on new tasks. However, overall lack of supportive health and care systems meant such changes resulted in a sharing of burdens as opposed to benefits.

Feminist disability studies provides an alternative framing to ableist approaches to disability and caregiving. It emphasizes the universal and relational nature of care giving and receiving, highlighting how autonomy can be exercised through care relationships—as opposed to care giving and receiving being disempowering. The experiences included here not only document the care provided by PwLC to other household members, but also how those otherwise considered dependents, such as children, took on new care tasks to support PwLC–creating close household networks of care. None of the accounts suggest this was easy, and much of it included sacrifice, highlighting how care challenges were linked to social and economic contexts—as well as physical impairments—which caregivers and receivers sought to overcome or circumvent. Parents with Long COVID felt guilt not only because of inability to complete childcare tasks, but also because of social norms that individualize responsibility for childcare. A caregiver had to change jobs because of the need for flexible work arrangements that enabled them to be home to support their partner. A youth gave up work, not because their parent was sick, but because there was a lack of transit options. These examples illustrate that whether caregiving and receiving are empowering or disempowering depends largely on policy choices, health systems, and social norms. PwLC and caregivers demonstrated remarkable aptitude in negotiating and resisting these. In particular, it was through caring for others—through Long COVID advocacy and community building—that participants sourced strength, demonstrating the radical power of care described in feminist disability studies literature [25].

Still, reduced ability to care for themselves and others led to feelings of guilt and frustration among PwLC and feelings of burnout among caregivers. Other research with PwLC has documented impacts related to anxiety and depression, loneliness, and self-hatred [30]. Feelings of poor self-esteem, as in this study, have been related to reliance on other people for care and their own reduced ability to complete care tasks for themselves and others [31]. Feminist and critical disability study lenses expose how such feelings are not only an individual experience but are constructed by social norms and policy structures that reward individual autonomy and make the universal experience of receiving care something to be ashamed of [16]. In what Calico terms the current “DIY” society, care responsibilities are individualized, with caregivers left to figure out “solutions” on their own and blame themselves if they cannot, regardless of the degree of state support or neglect for care infrastructure [29]. Ableist attitudes toward people with impairments, lack of public understanding (and therefore dismissal) of Long COVID, and inadequate health services and information further negatively affected both PwLC and caregiver wellbeing and contributed to burnout. These findings align with previous research that indicates ableism is not only disempowering, but can have direct negative health impacts on people with impairments [32]. Here, we find these effects extend to caregivers.

Caregivers’ descriptions of burnout and related feelings of apathy and frustration signal possible determinants of the negative aspects of care. Research with formal healthcare work has demonstrated how burnout can lead to decreased quality of care of patients and even abuse [30]. In the formal health system, paid care providers have the option of leaving work if overwhelmed by burnout, and at times are forced to resign. Such options rarely exist for family caregivers, with PwLC noting how the long (and generally unknown) duration of their illness contributes to caregiver burnout. Acknowledging the effects of burnout on caregivers, and therefore the quality and safety of care provision, is a crucial first step toward supportive policies and interventions that center the experiences of caregivers.

Exacerbating this dynamic, caregivers noted how new and expanded caregiving responsibilities reduced their ability to prioritize their emotional wellbeing. Additional time devoted to care work necessarily reduces time for other activities such as hobbies, exercise, and rest. This can compound the stress experienced by caregivers, as hobbies and other social activities have been found to support resilience and reduce stress during especially challenging periods. These connections have been drawn particularly for the mental wellbeing of youth and young adults. Given that many participants in this study described the impacts of Long COVID on parenting and the downstream impacts on children, support programs might explore ways to engage caregivers and children of PwLC in activities that promote relaxation and community connection.

PwLC and caregivers provided numerous recommendations on how to better resource households affected by Long COVID. Respondents spoke of how they could benefit from support with housework and daily tasks. Caregivers noted flexible work arrangements and options to work from home facilitated more efficient management of care and employment tasks—something PwLC have also noted can facilitate their return to work [33]. Financial assistance could also reduce the need to engage in paid labor, enabling adequate time for unpaid care work. Numerous studies have documented the inadequacy of both the caregiver and disability benefit programs in Canada [34]. Hossain et al. call for multilevel interventions across the health and social policy sectors, based on the expertise of PwLC and caregivers [27]. For example, social policy might provide increased in-home care support, labor accommodations can allow flexible work arrangements for PwLC and caregivers, and public health organizations can create public awareness campaigns about Long COVID to reduce stigma and gaslighting.

This study was conducted with a limited group of respondents in a particular place and time, and therefore is not meant to be generalizable or conclusive, seeking instead to document the lived experience of these PwLC and caregivers. In particular, our recruitment method may have biased results in that PwLC and caregivers already connected to peer supports, such as Long-Haulers groups and caregiver associations, were most likely to participate. Effort needs to be made to reach PwLC and caregivers who are not connected to existing supports as it can be assumed their needs may be greater. In addition, intersectional analysis that considers race, socio-economic status, and other social positions is needed to better understand the diverse experiences of PwLC and their caregivers. As Long COVID continues to be a public health crisis, further research is needed that centers PwLC and informal/unpaid caregivers who continue to provide the majority of care to PwLC. In particular, health systems research is needed to develop evidence-informed practice to support the wellbeing of PwLC and their caregivers.

5. Conclusion

This article demonstrates the trade-offs that PwLC and caregivers make in the home to accommodate the impacts of this illness on their daily lives. The negative effects of Long COVID on caregiving have cascading effects on the wellbeing of PwLC and caregivers that transcend physical requirements to emotional and relational. Findings point to the need for supportive social policies in terms of workplace flexibility and the provision of in-home care services. They further demonstrate the urgent need for a multipronged approach, including accessible and reliable information on Long COVID, financial support, as well as increased knowledge among health professionals and the general public. Looking upstream, a feminist critical disability perspective highlights the need to challenge ableist assumptions and policies, recognizing our health and social systems as determinants of wellbeing for people with disabilities and chronic conditions like Long COVID. Investments in improving healthcare access, awareness, and financial support for PwLC will also directly aid their caregivers. Similarly, improved recognition and support for caregivers (whether they be people living with disabilities or caring for those with disabilities) is crucial to addressing the widespread effects of Long COVID.

Disclosure

The funders made no contributions to the research or preparation of the manuscript.

Conflicts of Interest

The authors declare no conflicts of interest.

Author Contributions

Kayli Jamieson and Kaylee A. Byers conducted the primary research for this article. Julia Smith and Alice Mũrage analyzed the data. All authors contributed to the paper conceptualization. Julia Smith wrote the first draft, with the other authors contributing to subsequent drafts. All authors approved the final version to be published.

Funding

This research was supported by funding from Michael Smith Health Research BC and Post-COVID-19 Interdisciplinary Clinical Care Network.