Introduction

The COVID-19 pandemic has severely impacted healthcare providers, causing exhaustion, anxiety, and burnout [1–4]. In the early months of the pandemic, 26% of nurses worked overtime[5]. In 2021, approximately 20% of Canadian healthcare providers (236,000) worked overtime, averaging 8.2 hours/week of paid overtime and 5.8 hours/week of unpaid overtime [6]. Initially, healthcare providers were praised for their courageous care amid the risks, PPE shortages, and treatment uncertainties of COVID-19 [7]. However, as the pandemic continued into 2022, public gratitude diminished because of lockdown fatigue, vaccine conspiracy theories, and disparagement of medical knowledge [8]. Providers faced insults, threats, and increased stress as the pandemic persisted, alongside extended work hours, and changes in care delivery methods [6, 9, 10]. A survey conducted from September to November 2021 revealed that 92% of nurses, 83.7% of physicians, and 83.0% of personal support workers/healthcare aides and other providers felt more stressed at work compared to pre-pandemic times [11].

COVID-19 also presented a crisis for family caregivers [12–17]. Family caregivers are those who provide unpaid care for family, chosen family, friends, or neighbors with mental or physical illness, disabilities, or aging-related frailty. In the community, they handle 90% of care [18, 19], and assist with 15 to 30% of care in congregate care settings [20, 21]. The majority (84%) of family caregivers have a personal family connection to the care recipient, while 16% are not related [22]. The mental and physical health of care recipients deteriorated at an accelerated rate during the pandemic, [23] leading to increased caregiving hours and intensity [24, 25], amplifying the emotional and physical challenges of providing care [26, 27]. Family caregivers faced the dual concern of keeping their vulnerable loved ones and themselves safe from COVID-19, while also experiencing limited access to acute care, primary care, home care, and social care programs. They also had reduced opportunities for social activities and experienced higher levels of sleep disturbances, fatigue, anxiety, depression, and burnout [28, 29].

Family caregivers’ care trajectories have become much longer, more demanding, and intense because of medical advancements, longer life spans, and neoliberal policies to reduce medical care costs but transfer care responsibilities onto family caregivers [30, 31]. Many family caregivers are now taking on medical and nursing tasks that were traditionally performed by regulated health professionals[32, 33]. These tasks include wound care, catheterization, managing medical equipment like pumps, intravenous, clysis, administering injections (including narcotics and anticoagulants), and providing tube feeding and medications [34, 35] In addition to these medical and nursing responsibilities, family caregivers also assist with extended and basic activities of daily living. They also bear the structural burden of care of navigating, negotiating, accessing, and coordinating resources within a siloed healthcare system [36–38].

Despite their essential role in healthcare, family caregivers remain under-engaged and under-supported within the healthcare system [31, 39] and their distress rates are rising [40, 41]. While most American sons or daughters caring for their parents (86%) reported giving care was a positive experience [42], distress rises as the care workload increases. The proportion of distressed caregivers increases dramatically for providing over 20 hours of care per week to a recipient who lives with them, has conditions like dementia, depression, responsive behaviors, or lives with severe disabilities [43]. Employed family caregivers may experience more anxiety. In the 2018 Statistics Canada General Social Survey-Caregiving (GSS-C), one in four Canadians of working age (19 to 70), totaling 5.2 million people, juggled family caregiving and paid employment [44, 45]. The hours dedicated to caregiving by both employed men and women increased by almost 50% between the 2012 and 2018 GSS-C surveys, with women going from 9.5 to 13.8 hours per week and men from 6.9 to 10 hours per week. Increased caregiving hours raise the risk of work-family or family-work conflicts, where the demands or time requirements of work and family responsibilities clash [46, 47] and may contribute to stress and poor mental health [48, 49]. A recent study involving Canadian employees from various industries (automotive, manufacturing, insurance, research and development, health and social services, municipal government), highlighted that the number of hours spent organizing and coordinating healthcare tasks, rather than other family care tasks like housework, was associated with increased family-work conflict [50]. Employed family caregivers who dedicate over 20 hours per week to caregiving are 1.9 times more likely to experience poor work-life balance and twice as likely to leave their jobs compared to those providing less than 10 hours of care per week [45].

Double-duty caregivers and the impacts of COVID-19

Double-duty caregivers are those who are employed in the healthcare field and provide unpaid care at home. While some of the double-duty caregiver literature includes unpaid care to dependent children [51–55], we limit our definition of double-duty caregivers to those in family caregiving roles. Catherine Ward-Griffin and colleagues theorized while employed family caregivers experience stress from balancing caregiving, work, and other life roles, double-duty caregivers face unique stress due to blurred boundaries between their professional and personal caregiving responsibilities [56, 57]. Recent work supports this theory [58].

A 2020 study focusing on registered nurses revealed the blurring of boundaries as nurses shifted between their professional and family caregiver roles [59]. They faced the challenge of deciding whether to disclose their professional identity to those caring for the person they themselves were caring for, all while managing their own expectations and those of staff and their families [57]. The study authors also reported that double-duty caregivers learned from their experiences in the health care system, which influenced their practices with patients and family caregivers, as well as their efforts to educate other professionals about the caregiving journey. Another study conducted in 2021 by Bristol and colleagues [60] reported that double-duty caregivers sought inclusion in the care provided, anticipating that their unique insider perspectives would be valued. Similar to the nurses in Ward-Griffin’s original studies [61–63], nurses in Bristol’s study also encountered a struggle between their professional and family caregiver roles. They were taken aback by healthcare professionals’ expectation that they would accept care deficiencies [60]. This struggle intensified when interacting with other professionals who did not always appreciate their perspectives [60]. Similarly, critical care nurses who experienced a family member’s illness also faced challenges in maintaining a balance between their professional persona and ensuring adequate care for their loved ones [64]. Many researchers studying double-duty caregivers propose that the additional emotional and care responsibilities of caring at home and at work leads to increased anxiety [54, 65, 66]. Recognizing the negative effects of the COVID-19 pandemic on family caregivers and healthcare providers, we wondered about the impacts of the COVID-19 pandemic on double-duty caregivers. In our literature search, we found a commentary by a medical student who was a family caregiver on their double-duty caregiver experience and the need for health care providers to be educated to communicate with family caregivers [65]. We found no other research on double-duty caregivers in the pandemic. This is a significant knowledge gap as at least one-third of employed health providers are also family caregivers [44].

Methods

We conducted a sequential mixed-method study involving Canadian double-duty caregivers to capture the complexities of double-duty caregiving during the COVID-19 pandemic and the transition to the endemic phase of the pandemic. The two-phase study approach, beginning with a quantitative survey followed by qualitative interviews, was conducted from April 21, 2022, to December 18, 2022. Given the diverse nature of family caregivers and their experiences, our aim was to gain a comprehensive understanding of their experiences during the COVID-19 pandemic and the shift toward the endemic phase. Endemic status is reached when a significant portion of the global population has been vaccinated or infected, and the virus continues to circulate at lower levels, akin to the seasonal flu [67]. The exact timing of the transition from the COVID-19 pandemic to the endemic phase is uncertain.

Building upon the theory put forth by Ward-Griffin and colleagues [39,40], we hypothesized that greater expectations and blurred boundaries would be associated with higher levels of anxiety, while increased support, awareness of limits, boundary-setting, and making connections would be linked to lower anxiety. We then hypothesized that caregiver health would be strongly associated with anxiety, and that age, gender, boundary blurring, expectations, support, awareness of limits, boundary-setting, connection-making, work hours, caregiving hours, and financial difficulties would also significantly contribute to caregiver anxiety. We also conducted interviews to further understand the experience of double-duty caregiving during the COVID-19 pandemic and its transition into an endemic phase.

To ensure the accuracy and relevance of our survey, our research team designed it and then had four double-duty caregivers from our team conduct a thorough pretest. Subsequently, we obtained approval from the ethics board to proceed with the study.

Results

Participant characteristics

Of the 415 people who completed the survey over half (54.9%) were 35 to 54 years of age and 29.2% were 55 to 64. The majority identified as female (92.5%) and married (77.3%). They identified 47 different occupational roles. Just over a third (34.5%) were nurses, followed by diagnostic imaging specialists (14.7%), social workers/ mental health councillors (7%), radiation therapists/ technologists (5.3%) and physicians (4.6%). Over half lived in urban areas (58.8%) with equal proportions from suburban (20.7%) and rural areas (20.7%). Just over a third (38.1%) had dependent children. At the time of the survey, almost half (42%) reported working in paid employment 40 or more hours weekly and 17.3% were employed 29 hours or less. Over two-thirds (68.9%) estimated their mental health had deteriorated in the past year, and 60.7% indicated that their physical health worsened. A third (34%) rated their health as fair or poor, 40.5% as good, 20.5% as very good, and 4.8% as excellent. See Table 1 Demographics.

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Table 1. Demographics, and key caregiving characteristics (n = 415).

https://doi.org/10.1371/journal.pone.0298584.t001

They had been providing unpaid care for a mean of 8.5 years (median 6 years) and almost half (47%) for parents, a quarter (25.3%) for children with special needs, and 13.7% for a spouse. The mean age of the person they cared for was 59.3 years, ranging from an infant born with disabilities to a 100-year-old adult. Most care recipients (84.6%) lived in community homes, with 46% living with the double-duty caregiver and 38.6% living in a separate home. There were equal proportions living in supportive living (7.7%) and long-term care (7.7%). Thus, most (80.7%) reported a travel time of 30 minutes or less to their receiver’s residence. Just over half (54.4%) cared for 20 hours or less, 21.7% for 21 to 40 hours, and 21.2% for 41 or more hours weekly. When we divided participants with complete scores into three prototypical groups using Ward-Griffin’s guidance for Double-duty Caregiver Interface scores, 5.4% were Making it work, 28.7% were Working to manage, and 65.8% were Living on the edge at the time of the survey. Aligned with the high proportions who felt they were Living on the edge, the mean on the Six-Item Anxiety Scale was 50.9 (SD 15.5, Median 50). Scores of ≥41 indicate moderate to severe anxiety. Three-quarters (75.9%) of the double-duty caregivers’ self-rated anxiety was moderate to high.

As we could expect with higher anxiety, the proportions of those Living on the edge (65.8%) were higher in this sample than Ward-Griffin’s 2014 population (53.1%) [56, 57]. The 2022 Making it work(5.4%) and Working to Manage (28.7%) prototype proportions were lower than Ward-Griffin’s [56, 57] 12.5% and 34.4% respectively.

Double-duty caregiver scale factors associated with anxiety

Results from the hierarchical linear regression model testing the associations between the factors in the Double-duty Caregiver Scale are summarized in Table 2. There were no violations of assumptions of normality, linearity, multicollinearity, and homoscedasticity. The total variance explained by the model was 29.4%. Hypothesis one that the Double-duty Caregiver Scale factors would significantly predict anxiety was partially supported. The statistically significant factors (in order of beta values) were Caregiving Interface perceptions (β = .202), supports- personal(β = -.208), Caregiving Interface- consequences (β = .179), knowing limits (β = -.125) and setting limits (β = -.096).

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Table 2. Linear regression results of the double-duty caregiver scale factors.

https://doi.org/10.1371/journal.pone.0298584.t002

Our second regression analysis regressed anxiety on the demographic factors and predictor variables. In Step 1, with the demographic variables of age and gender, the model was significant (F (2, 374) = 6.07, p = .004, R² = .003). In Step 2 with double-duty caregiving variables, the model was also significant (F (7, 371) = 20.35, p = < .001) accounting for 30% of the variance (R² = .300). Younger age, more personal supports, and knowing limits were significant in reducing distress. Both the Caregiving Interface perceptions and consequences of the blurring of boundaries between family caregiving and employment were significant in increasing distress. In Step 3, adding time spent in family care work and employment, perceptions of financial distress from caregiving, and self-rated health significantly improved the model (Δ R².096, F change (4, 367) = 13.52 p = < .001). This final model explained 36.8% of the variance. Hypothesis two that caregiver health would be strongly associated with anxiety, and that age, gender, boundary blurring, expectations, support, awareness of limits, boundary-setting, connection-making, work hours, caregiving hours, and financial difficulties would also significantly contribute to caregiver anxiety was partially supported. Personal supports (standardized β = -.16), knowing limits (standardized β = -.13), younger age (standardized β = -0.11), and fewer weekly employment hours (standardized β = -0.09) and were significant factors in reduced anxiety. Poor health (standardized β = .28), blurring boundaries, both perceptions (standardized β = .19) and consequences (standardized β = .12) were significant factors in increased anxiety (See Table 3). Gender, familial and professional expectations, professional supports, making connections, caregiving hours and financial difficulties were not significant factors in anxiety.

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Table 3. Hierarchical regression analysis predicting anxiety.

https://doi.org/10.1371/journal.pone.0298584.t003

Discussion

First, we hypothesized that greater expectations and blurred boundaries would be associated with higher levels of anxiety, while increased support, awareness of limits, boundary-setting, and making connections would be linked to lower anxiety. It was partially supported. We found that both perceptions and consequences of blurred boundaries (Caregiving Interface) were significantly associated with higher anxiety. Personal supports and knowing and setting limits were significant in reducing anxiety. Second, when examining factors beyond the double-duty caregiving scale, we hypothesized that better caregiver health, younger age, male gender, less boundary blurring, fewer expectations, greater support, more awareness of limits, more connections, fewer weekly work and caregiving hours, and fewer financial difficulties would be predictive of less caregiver anxiety. Hypothesis two was also partially supported. In the final regression model, better health, personal supports, knowing limits, younger age, fewer weekly employment hours and setting limits were significant factors in reduced anxiety. Blurring boundaries, both perceptions and consequences, and financial difficulties from caregiving were significant factors in increased anxiety. Neither familial nor professional expectations nor employment supports, setting limits, and making connections were significant contributors to the model. We now discuss these quantitative results, considering our qualitative findings and the literature.

The qualitative data consistently highlighted the overarching theme of navigation difficulties within health and community systems. Family caregivers often find themselves becoming the de facto navigators in these systems [10,11,49,50]. Before the pandemic (2017), Taylor and Quesnel-Vallée estimated that family caregivers spend a significant portion of their time (15 to 50%) on the structural burden of care, which involves assessing and understanding needs, advocating for care, accessing services, and coordinating various aspects [37]. In their study of double-duty caregivers, St. Amant and colleagues [47] identified similar tasks, such as assessing, advising, advocating, collaborating, coordinating, and consulting associated with the professionalization of family care.

Notably, our study participants wondered how family caregivers coordinate and provide care without formal healthcare training. Similar observations have been made by Valaitis et al. [85] and Funk [86, 87] who reported that health and social care systems are challenging to navigate because of restrictive eligibility criteria, complex application processes, and other gatekeeping mechanisms. Besides complex navigation, family caregivers are expected to understand and manage complex health information and perform intricate medical tasks [31, 88]. Even prior to the pandemic, over half of family caregivers were already performing medical tasks typically handled by licensed healthcare professionals, including wound care, administering fluids and medication, and operating medical equipment such as health monitors and ventilators [17, 31, 89]. There is a pressing need for well-coordinated, integrated health and social care systems that support collaborative partnerships with patients and family caregivers [85, 86].

The quotes about expectations, “It’s just part of who I am,” “Basically the perfect ingredients” and “There is no end to work expectations except to ‘do more’” exemplified the heightened expectations double-duty caregivers experienced at work and at home since the pandemic began in March 2020. They felt a strong sense of responsibility, committing to caregiving both at home and in their professional roles. Professional expectations included increased work demands, lack of resources, and challenges in maintaining work-life balance. Expectations stemmed from cultural values of women and those with medical knowledge being expected to provide care and health providers as self-less, “projected to care like Florence Nightingale”. Some participants highlighted the unfair burden placed on women in healthcare, expecting “Florence Nightingale skills” expecting them to be resilient and manage multiple responsibilities without allowing time for self-care. These pressures intensified during the pandemic, exacerbated by ongoing staff shortages. Balancing employment, family caregiving, and personal life became increasingly challenging, leading to heightened anxiety. Most paid care workers in Canada are women (75% in 2016) [90]. During the COVID-19 pandemic, employment evolved differently for men and women in care occupations. While both men and women in care occupations experienced employment losses, women suffered greater losses than men (62.5%) at the beginning of the pandemic [91]. The gender differences lessened but continued October 2020 to February 2021 with women accounting for 56.4% of the year-over-year employment losses. The authors speculate that gendered care responsibilities may have caused women to stay at home.

Feminist scholar, Tronto argues that the traditional gender script in our society has embedded caring as women’s work [92]. She suggests women are expected to care for their families, neighbors, and friends, and that they do so by doing the direct work of caring. Tronto has long charged that culturally, care is undervalued, invisible, underpaid, and without adequate support [93–96]. She contends traditionally we have viewed care as the private work of families, rather than a public responsibility. Care roles and responsibilities are unequal and unbalanced. Privileged groups and men can absolve themselves of the responsibility for care. The result is a lack of support for both paid care workers and unpaid family carers who are primary women.

Notably, in June 2020 as they called for papers about the impact of the COVID-19 pandemic, Tronto and Fine suggested the pandemic had highlighted the importance of care and the need for greater public support for care workers and family carers [97]. By 2022 however, they were more pessimistic, suggesting a return to the pre-COVID cultural status quo [10]. They argued we should culturally recognize care as a social justice issue; then emphasized the importance of transforming toward a caring society based on democratic care practice, where all voices and perspectives are included and heard. With the ongoing shortage of health care providers and the importance of work-life balance to well-being, there is an urgent need to reflect on traditional expectations of care and to move forward with a new ethic of caring that is grounded in justice, equity, and diversity, thereby creating a more inclusive and equitable culture of care that values the well-being of the people providing care.

Personal but not professional supports or using professional connections to obtain care were significant factors in reducing double-duty caregiver’s anxiety. In the interviews, the double-duty caregivers leveraged their knowledge and expertise as health professionals to navigate the health care system and access support and care for the people they cared for. In fact, they marveled at how family caregivers, without their healthcare knowledge, managed. Even by using their healthcare experience to access supports, personal and professional support resources varied significantly. Family caregivers and their care situations are diverse and change along the care trajectory [98–101]. Health providers should take a proactive approach in assessing double-duty caregivers’ skills, knowledge, and needs and offer all family caregivers the guidance, education, and resources needed to support them in their roles. Policy makers and researchers could engage double-duty caregivers to co-design better systems to support family caregivers and the people they care for.

Caregiving roles at home need to be acknowledged and supported with health system workplace policies. Participants described ad hoc situations that depended upon immediate leadership. Several of the double-duty caregivers we interviewed were circumspect about revealing their caregiving role to colleagues or leadership at work. In the interviews, two cited preferring to be private for not revealing they were family caregivers at home. Others were concerned their caregiving responsibilities might be perceived as distraction or that it might affect their ability to meet work demands. Comments in the survey and interviews also highlighted the lack of workplace policies to support family caregivers. All the double-duty caregivers in the interviews were aware of employee assistance programs, but only one reported it helped.

Flexible work schedules, especially flexibility to manage the care-receiver’s appointments or crisis were valued. A recent review reported that because of the 1993 United States Family Medical Leave Act to support work-life balance, some American employers are offering paid emergency adult care days plus subsidized in-home adult care to accommodate the unpredictable nature of adult caregiving (41.25% of the workplaces in the review) [102]. However, the lower cost support groups, counseling and workshops were more frequently offered. Many of our participants noted employers or leadership were unable or unwilling to provide flexible work arrangements. Survey and interview respondents commonly reported being forced to take holidays or sick days to accommodate their caregiving. Interview respondents stressed it was difficult to get regular in-home staff during the pandemic and staffing shortages continue to make arranging alternative care challenging. Researchers report that immediate managers or leaders play a critical role in recognizing employee stress and deciding how to allocate support or caregiving policies [70–72]. Whether employees ask for supports or leaders apply caregiver support policies depends on the workplace culture [72]. Caregiving employees are more likely supported in workplace cultures that view work-life balance or caregiver-friendly workplace polices as an important to their business practices [72].

Survey and interview participants were particularly disturbed by the inequity related to differences in pay scales in hospitals, home care, and long-term care for providers with the same qualifications or staff hired temporarily through agencies and exclusions for certain groups of healthcare workers for pandemic payments. They attributed some of the difficulty getting home care and home care staffing shortages to higher pay scales in acute care than in long-term care and then in-home care. In their 2013 policy brief, Ward-Griffin and colleagues recommended enhancing community and home care system supports for family caregivers juggling employment and caregiving. The research on caregiver-friendly workplace policies is also relevant to health care systems [103, 104]. Since 2013, the landscape family caregivers navigate is increasingly challenging, marked by prolonged and demanding care trajectories because of advancements in medicine, longer lifespans, and cost-cutting measures that shift care responsibilities onto families [4, 50, 58]. These caregivers now shoulder not only personal care and extended activities of daily living, but also medical and nursing duties traditionally done by regulated health professionals. In our siloed health and social care systems, they are the de facto care coordinators finding, negotiating for, and coordinating resources [38, 105].

Setting limits and knowing limits were both significant factors in reducing double-duty caregiver distress. In the survey responses and interviews, participants reported trying to maintain a clear boundary between their personal and professional lives. However, setting limits became increasing more difficult as employment and/or caregiving demands increased. Increased time spent caring at work and at home reduced double-duty caregivers’ family, social, and self-care. They had fewer opportunities for activities that bring joy in life such as connecting with family and friends or engaging in exercise or personally meaningful activities. Thus, it is not surprising that blurring boundaries, both perceptions and consequences were significant factors in increased anxiety. As we could expect with higher anxiety, the proportions of those Living on the edge (65.8%) were higher in this sample than Ward-Griffin’s 2014 [56, 57] population (53.1%). The 2022 Making it work (5.4%) and Working to Manage (28.7%) prototype proportions were lower than Ward-Griffin’s [56, 57], 12.5% and 34.4% respectively. Notably, 60.7% perceived their physical health declined in the last year and 68.9% reported their medical health worsened. It is critical to improve the working conditions for double-duty caregivers and working caregivers.

The strain on the healthcare workforce and system was building long before COVID-19 began. In 1995, Celia Davies pointed out the unsustainable workload for nurses, management’s struggle to cope, and a disconnect in leadership [106]. Adding to these challenges, from 2005 to 2018 front-line healthcare providers have experienced increased job insecurity and fewer support systems as governments tried to reduce or contain health care costs [107]. Currently, Canada is facing an unprecedented shortage of health care professionals [108]. The health and social services sector vacancy rate was 5.7% in November 2022, down from a multi-year high of 6.6% in September 2022 [109]. Burnout from the COVID-19 pandemic and demand from treatment postponed during the pandemic contributed, but an aging workforce, increased demands from an older population, providers overwhelmed by non-medical demands, and younger professionals who are working fewer hours to achieve a better work-life balance contribute to the provider shortage that is not expected to ease for at least 6 years [108].

Based on their research, Ward-Griffin and colleagues [110] called on health care administrators, human resource managers, researchers, policy makers, health provider associations, and union officials to work collaboratively to enhance workplace supports and human resource policies that recognize and support double-duty caregivers and create caregiver-friendly workplaces. They invited national, provincial, and territorial professional associations from across Canada to lobby governments to institute caregiver rights that recognize the value of family caregivers’ unpaid labor. Very little has been done. The Canadian Centre for Caregiving Excellence charges the patchwork of provincial, territorial, and federal caregiving policies is failing [4]. The health and social care systems that family caregivers, healthcare providers and care recipients rely on for support have been overextended after years of under-funding, and now because of the impacts of the COVID-19-pandemic.

By 2046, a striking 20% of Canadian—the aging baby boomers and their echo boomer children—will be 65 years or older [111]. Despite the dedicated efforts of healthcare staff, Canada’s health and continuing care systems are unprepared for the mounting demand. We do not have 10 years to make the changes that the system needs. Next year, the baby boomers turn 75. If we persist with the status quo, the operating costs of continuing care will double by 2032 [112, 113]. Innovative solutions are imperative in tackling this looming care crisis head-on.

Conclusion

The shortage of healthcare workforce should prioritize the concern of double-duty caregivers. The COVID-19 pandemic has shed light on various care issues, but attention has waned. Family caregiving, which was previously invisible, remained unnoticed during the pandemic as well. Double-duty caregiving was even more invisible. However, the care needs of the Canadian population are increasing as the proportion of older adults increase. Given that family caregivers form the largest care workforce, that includes the subset know as double-duty caregivers, it is crucial for health systems involved in care to prioritize their double-duty caregiver workforce and family caregivers’ well-being. Researchers, policymakers, administrators, human resource managers, health provider associations, and citizens need to reevaluate the ethics and equity surrounding caregiving and double-duty caregiving.

Supporting information

Acknowledgments

Thank you to the survey and interview participants who gave generously of their time.