Caring for our caregivers in a pandemic: challenges, gaps and suggestions for change

View author details View Less
  • 1 University of Ottawa, , Canada
Full Access
Get eTOC alerts
Rights and permissions Cite this article

Unpaid caregivers provide valuable care that saves the Canadian healthcare system billions of dollars every year. Caregiving is highly taxing, often resulting in psychosocial impacts that are associated with negative health outcomes and decreased quality of life for caregivers. These impacts are exacerbated when public health disasters occur, such as pandemics. This article employs a socioecological approach to explore how existing risk factors at the micro, meso and macro levels negatively impacted caregivers in Canada during the COVID-19 pandemic. We use these findings to suggest policy recommendations and advocate for better support for caregivers in the event of future pandemics or other disasters.

Abstract

Unpaid caregivers provide valuable care that saves the Canadian healthcare system billions of dollars every year. Caregiving is highly taxing, often resulting in psychosocial impacts that are associated with negative health outcomes and decreased quality of life for caregivers. These impacts are exacerbated when public health disasters occur, such as pandemics. This article employs a socioecological approach to explore how existing risk factors at the micro, meso and macro levels negatively impacted caregivers in Canada during the COVID-19 pandemic. We use these findings to suggest policy recommendations and advocate for better support for caregivers in the event of future pandemics or other disasters.

Key messages

  • Demands of caregiving often lead to feelings of stress, fatigue and anxiety, which can lead to caregiver burnout.

  • Federal public policy and programmes for caregivers, as currently being delivered, fail to adequately meet the needs of caregivers in the Canadian context.

  • COVID-19 has impacted factors at all three socioecological levels to increase caregiver burden (that is, a negative impact on mental and physical health, a blunting of the creation of social capital, and the initiation of policies that have consequently increased social isolation).

  • With the ageing Canadian population, a continued reliance on informal caregivers to provide the bulk of homecare necessitates government action for appropriate financial and social supports that benefit improved health for caregivers.

Introduction: problem and urgency of action

Caregivers are people who provide unpaid services, typically to family members or friends who need assistance with the completion of activities of daily living because of long-term health conditions, age-related decline and physical and/or cognitive deficits (Hango, 2020). According to a report by the National Institute on Ageing in Canada, informal caregivers save the Canadian healthcare system approximately 30 billion dollars in costs associated with health service provision and institutionalisation (National Seniors Strategy, 2016).

Caregivers increase the likelihood that recipients of care are able to remain in their homes, which positively influences their quality of life (Hango, 2020). The role of caregiving strengthens relationships and commitments between the carer and care receiver, increases carer pride and appreciation, provides a strong sense of purpose in life, and increases tolerance, empathy and compassion. Despite these benefits, caregiving is associated with negative health outcomes related to unmet support needs that lead to decreased quality of life (Pinquart and Sörensen, 2006).

The demands of caregiving often lead to feelings of stress, fatigue and anxiety, which can lead to poor sleep, reduced overall well-being and depression (Piquant and Sörensen, 2006). These factors can place the carer under stress and take a toll on mental, emotional and physical health, leading to caregiver burnout. Hango (2020) showed that lower levels of well-being among Canadian caregivers were associated with a lack of sufficient financial and social support for their activities. Local, provincial and national advocacy groups continue to echo the same message. These negative impacts can be exacerbated when a state of emergency occurs, such as in the event of the COVID-19 pandemic (O’Sullivan et al, 2012).

In this article, we use a socioecological approach to demonstrate factors that disproportionately impacted caregivers during the COVID-19 pandemic in Canada. The socioecological model posits that individual behaviour is affected by three interconnected levels, that is, the macro, meso and micro levels, accounting for the broader systems and policy level, community level, and individual level, respectively. Broad distal determinants (that is, social-structural conditions and systems) can exert contextual effects impacting individual health (Berkman and Krishna, 2014). The dynamic interactions between levels must be considered to adequately address the complexity of this population health issue. We demonstrate the need for government action to address the unmet financial and social support needs of Canadian caregivers, as COVID-19 magnified an existing inequity faced by many caregivers in Canada.

Macro level: upstream factors impacting caregiver health outcomes

At the upstream, macro level, several systemic conditions (determinants of health, cultural norms, policies and so on) exist that contribute to caregiver health outcomes. Known social determinants of caregiver health leading to higher risk of adverse health outcomes include gender (that is, being a woman), ethnicity (that is, being indigenous or an immigrant), socio-economic status (that is, having low education and income, having precarious or no employment, or experiencing poverty) and age (that is, being a younger mother caring for child, unmarried/divorced or an older wife caring for spouse) (Berkman and Krishna, 2014).

Canada has implemented federal public policy and programmes for caregivers, currently, the Compassionate Care Benefit (CCB) and the Canadian Caregiver Credit (CCC). Unfortunately, they fall short of true support for caregivers. CCB is limited to six weeks’ workplace leave for dying relatives, while CCC is characterised as ‘low value … [benefitting] only 1% of tax filers (mostly high income and male)’ and not deemed beneficial to caregivers’ financial stress (Fast et al, 2018: 6). Additionally, there are inconsistencies across Canadian provinces, which vary in terms of their financial and social support for caregivers. With the emergence of COVID-19, we have seen a further decrease in caregiver quality of life.

In response to the COVID-19 pandemic, Canadian provincial and federal governments coordinated lockdowns in an attempt to ‘flatten the curve’ and reduce the burden on the healthcare system. The shutting down of ‘non-essential’ healthcare services (that is, elective surgeries and homecare/community professional services), travel restrictions (that is, public transportation/border crossings), transitioning to working from home and job loss exposed health inequities for certain caregiver subgroups. In the short term, this not only led to increased risk of infection and exposure, but also exacerbated pre-existing caregiver negative mental and physical health.

Socio-economic conditions have a key role in health inequities faced by the racialised caregiving population during the pandemic. At higher risk are Black Canadians (due to systemic racism), indigenous peoples (due to structural colonialism and discrimination) and recent migrants and refugees. They tend to have lower-paid employment and lose their jobs due to precarious occupations, with no sick leave and health insurance. Essential service workers (service industry or front-line healthcare workers), mostly racialised and/or women, could not work from home during COVID-19; to keep their jobs, they had to physically be at work during the pandemic, increasing their immediate risk of exposure, as well as that of their care receiver. A protective short-term upstream factor has been the Canada Emergency Response Benefit (CERB), introduced by the federal government to help people who stopped working for reasons related to COVID-19. Unfortunately, CERB is time-limited and not accessible to the aforementioned at-risk populations due to several barriers, such as equipment/Internet access, online submission literacy, language barriers, eligibility and migrant status (Hjalmarson, 2020). The cultural norm remains that women are the predominant informal care providers to family and friends; it is usually a dyadic rather than multimember caregiving relationship, meaning that there is little respite for the caregiver. Studies have shown that women tend to report greater caregiver burden when compared to men (Pinquart and Sörensen, 2006). Pandemics are ‘powerful changemakers’ that cause social change and economic transformations at the distal level, affecting many factors along the way – at the meso and micro levels – that exacerbate already-existing negative health outcomes.

Meso level: institutional and community conditions influencing caregiver burden

Meso-level determinants of health include institutional-level factors, such as hospitals, schools, community infrastructure, community capacity and resources. During COVID-19, access to medical care and homecare supports in the community were challenged, service provision was limited, and methods for service delivery largely pivoted to virtual options, particularly during lockdowns. Several economic, financial, environmental and sociocultural factors disproportionately impact caregivers and may be exacerbated during a pandemic. Caregivers who lose paid employment may experience additional financial constraints. The majority of people who require homecare often do not receive enough support to meet their needs from publicly funded services, meaning that caregivers and families would have to compensate by paying out of their own pockets or attempting to meet those needs themselves.

Environmental factors include access and proximity to goods and services. Social capital is tightly connected to environmental factors and is defined as resources made available to an individual through cultivated social connections and relationships; it is essential for building adaptive capacity (Norris et al, 2007). During COVID-19, physical-distancing guidelines acted as a barrier to fostering community connections, impacting social capital. Virtual options for support can have important implications in a pandemic when public health measures deter the gathering of groups of people and restrict movement. For example, caregivers who live in remote and rural areas may be at increased risk of negative health outcomes due to the additional amount of time it may take to access emergency services, though access to virtual options for care may circumvent this issue. Consequently, caregivers who do not have access to technology or the know-how to use it may be at an increased risk of negative health outcomes due to isolation (Yoon et al, 2020). Citywide shutdowns of community centres, recreation complexes and in-person support groups during the pandemic challenged the cultivation and maintenance of supportive relationships, social capital and access to community-level supports, which likely contributed to caregiver burden.

Sociocultural factors play an important role in influencing caregiver burden. For caregivers with younger children, COVID-19 has led to more responsibility for managing homeschooling and childcare while working from home. These impacts tend to be gendered, with the brunt of the caregiving role falling on women, who may also experience additional fears related to job loss, financial consequences and virus transmission (Kent et al, 2020). In multicultural countries, such as Canada, the community’s cultural beliefs and attitudes can influence how caregivers interpret their role. In some Latin American and Asian cultures, there is an embedded sense of duty in terms of caring for family members (Sutter et al, 2016). In cultures that place a higher value on caregiving roles, caregivers may be less likely to ask for external help and support, which puts them at higher risk of experiencing stress related to this role (Sutter et al, 2016).

Micro level: downstream individual factors influencing caregiver health inequities

A pandemic can be conceptualised as a chronic, unpredictable stressor because it has no specific end date, disrupting daily routines and increasing caregiver responsibility. ‘Caregiver burden’ is a commonly acknowledged problem with regards to the continuity of care in the community and includes the physical, psychological, emotional and financial toll that the role of caregiving has on the well-being of caregivers. At the micro level, fear associated with virus transmission, extended periods of isolation and reduced or altered social engagement are likely to have lasting impacts on the well-being of caregivers (Prime et al, 2020).

Pandemics pose serious threats to the ‘caregiver–care recipient dyad’; if caregivers become sick, they may be unable to meet the demands of their role, resulting in negative implications for both the caregiver and the recipient of care (Gallagher-Thompson et al, 2020). Additionally, if a caregiver becomes mildly sick or is an asymptomatic carrier of the virus, they may continue to fulfil their role, putting the recipient of care at an increased risk of illness. Fear associated with virus transmission also has the potential to impact a caregiver’s ability to complete instrumental activities of daily living for both themselves and the recipient of care, such as grocery shopping, obtaining medication and running other community errands.

Another consideration that may disproportionately impact caregivers are the social-distancing measures widely implemented during the pandemic, leading to increased isolation. Lack of intimate face-to-face interaction during the pandemic may impact mental health and well-being, compounding caregiver burden. Socially isolated caregivers are more likely to participate in detrimental health behaviours, including smoking, consuming alcohol and engaging in a sedentary lifestyle (Berkman and Krishna, 2014). Low social interaction and participation in self-care behaviours, paired with higher caregiver burden, can worsen the overall health of caregivers. Social engagement supports positive mental health; protective factors for caregivers include increased social support, help-seeking behaviour, social engagement, meaningful relationships and access to community resources (Berkman and Krishna, 2014).

Recommendations: how can we move forward?

In the Canadian context, the federal government should increase financial and social support for caregivers as part of improving home and community care, aligning with the Government of Canada’s Common Statement of Principles on Shared Health Priorities (2017). Recommendations for moving forward include the following fiscal investments:

  • At the individual caregiver level, providing adequate, accessible tax breaks and financial subsidies for all caregivers, particularly known vulnerable subgroups, to alleviate unmet financial needs (Fast et al, 2018).

  • Increasing funding for community-level social supports that aim to reduce caregiver burden in an effort to improve quality of life and well-being for caregivers, care recipients and their communities, enhancing unmet social supports.

Macro-level policy options include:

  • Working with the provincial/territorial labour sector to develop policies that create positive workplace environments for caregivers. This will reduce stress and allow flexibility for caregivers to deal with their caregiving responsibilities.

  • Working with key provincial/territorial healthcare systems to harmonise caregiver social supports, screening, access to training and appropriate funding allocations for homecare services that support caregiving and care receiving.

Concluding thoughts and the need for change

This is an issue of social justice, not only for care receivers to maintain their human right to live in dignity at home and in the community, but also for the caregivers, who bear the unjust division of labour, unpaid work and diminished health without necessary supports. The Canadian Caregiver Coalition stresses that an individual has a right to provide care to their dependants without risking impoverishment or dependency. Canadian caregivers provide 70 to 75 per cent of homecare, averaging about 19 hours a week, while also juggling employment, family and social lives. The estimated market value of unpaid care by caregivers is CA$25 billion per year. With the current pandemic and overtime, deteriorating health conditions and increasing care-receiver needs will require additional caregiver labour. Without proper supports in place, this will negatively impact caregiver health, family, social life, employment and financial security. Current caregiver financial and social supports are fragmented, disorganised and inadequate, penalising vulnerable subgroups (that is, women, the elderly, migrants, refugees and those with low socio-economic status), despite their economic contribution to the health sector. With the ageing Canadian population, a continued reliance on informal caregivers to provide the bulk of homecare necessitates government action for appropriate supports that benefit improved health for caregivers and reduce inevitable, costly stress on healthcare systems.

Contributions

All authors conceived and designed the argument, equally contributed to the drafting of the manuscript, and read and approved the final submission. Dina Idriss-Wheeler had final responsibility to submit on behalf of the team.

Conflicts of interest

The authors declare that there is no conflict of interest.

References

  • Berkman, L.F. and Krishna, A. (2014) Social network epidemiology, in L. Berkman, I. Kawachi and M. M. Glymour. (eds) Social Epidemiology, 2nd edn, New York: Oxford University Press, ch 7.

    • Search Google Scholar
    • Export Citation
  • Fast, J., Eales, J. and Keating, N. (2018) Informal caregiving: what are the financial costs for caregivers? CRDCN Synthesis Series.

  • Gallagher-Thompson, D., Choryan Bilbrey, A., Apesoa-Varano, E.C., Ghatak, R., Kim, K.K. and Cothran, F. (2020) Conceptual framework to guide intervention research across the trajectory of dementia caregiving, The Gerontologist, 60(Supplement 1): S2940, doi: 10.1093/geront/gnz157.

    • Search Google Scholar
    • Export Citation
  • Government of Canada (2017) A common statement of principles on shared health priorities, https://www.canada.ca/content/dam/hc-sc/documents/corporate/transparency_229055456/health-agreements/principles-shared-health-priorities.pdf.

    • Search Google Scholar
    • Export Citation
  • Hango, D. (2020) Support received by caregivers in Canada, Statistics Canada, https://www150.statcan.gc.ca/n1/en/catalogue/75-006-X202000100001.

    • Search Google Scholar
    • Export Citation
  • Hjalmarson, E. (2020) Canada’s emergency response benefit does nothing for migrant workers. The conversation, 6 May, http://theconversation.com/canadas-emergency-response-benefit-does-nothing-for-migrant-workers-136358.

    • Search Google Scholar
    • Export Citation
  • Kent, E.E., Ornstein, K.A. and Dionne-Odom, J.N. (2020) The family caregiving crisis meets an actual pandemic, Journal of Pain and Symptom Management, 60(1): e669, doi: 10.1016/j.jpainsymman.2020.04.006.

    • Search Google Scholar
    • Export Citation
  • National Seniors Strategy (2016) An Evidence-informed National Seniors Strategy for Canada, 2nd edn, http://www.nationalseniorsstrategy.ca/wp-content/uploads/2015/01/National-Seniors-Strategy-Second-Edition.pdf.

    • Search Google Scholar
    • Export Citation
  • Norris, S.S.P., Pfefferbaum, B., Wyche, K.F. and Pfefferbaum, R.L. (2007) Community resilience as a metaphor, theory, set of capacities, and strategy for disaster readiness, American Journal of Community Psychology, 41(1–2): 12750, doi: 10.1007/s10464-007-9156-6.

    • Search Google Scholar
    • Export Citation
  • O’Sullivan, T., Ghazzawi, A., Stanek, A. and Lemyre, L. (2012) ‘We don’t have a back-up plan’: an exploration of family contingency planning for emergencies following stroke, Social Work in Health Care, 51(6): 53151, doi: 10.1080/00981389.2012.681539.

    • Search Google Scholar
    • Export Citation
  • Pinquart, M. and Sorensen, S. (2006) Gender differences in caregiver stressors, social resources, and health: an updated meta-analysis, The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 61(1): 3345, doi: 10.1093/geronb/61.1.p33.

    • Search Google Scholar
    • Export Citation
  • Prime, H., Wade, M. and Browne, D.T. (2020) Risk and resilience in family well-being during the COVID-19 pandemic, American Psychologist, 75(5): 63143, doi: 10.1037/amp0000660.

    • Search Google Scholar
    • Export Citation
  • Sutter, M., Perrin, P.B., Peralta, S.V., Stolfi, M.E., Morelli, E., Peña Obeso, L.A. and Arango-Lasprilla, J.C. (2016) Beyond strain: personal strengths and mental health of Mexican and Argentinean dementia caregivers, Journal of Transcultural Nursing, 27(4): 37684, doi: 10.1177/1043659615573081.

    • Search Google Scholar
    • Export Citation
  • Yoon, H., Jang, Y., Vaughan, P.W. and Garcia, M. (2020) Older adults’ Internet use for health information: digital divide by race/ethnicity and socioeconomic status, Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 39(1): 10510, doi: 10.1177/0733464818770772.

    • Search Google Scholar
    • Export Citation
  • Berkman, L.F. and Krishna, A. (2014) Social network epidemiology, in L. Berkman, I. Kawachi and M. M. Glymour. (eds) Social Epidemiology, 2nd edn, New York: Oxford University Press, ch 7.

    • Search Google Scholar
    • Export Citation
  • Fast, J., Eales, J. and Keating, N. (2018) Informal caregiving: what are the financial costs for caregivers? CRDCN Synthesis Series.

  • Gallagher-Thompson, D., Choryan Bilbrey, A., Apesoa-Varano, E.C., Ghatak, R., Kim, K.K. and Cothran, F. (2020) Conceptual framework to guide intervention research across the trajectory of dementia caregiving, The Gerontologist, 60(Supplement 1): S2940, doi: 10.1093/geront/gnz157.

    • Search Google Scholar
    • Export Citation
  • Government of Canada (2017) A common statement of principles on shared health priorities, https://www.canada.ca/content/dam/hc-sc/documents/corporate/transparency_229055456/health-agreements/principles-shared-health-priorities.pdf.

    • Search Google Scholar
    • Export Citation
  • Hango, D. (2020) Support received by caregivers in Canada, Statistics Canada, https://www150.statcan.gc.ca/n1/en/catalogue/75-006-X202000100001.

    • Search Google Scholar
    • Export Citation
  • Hjalmarson, E. (2020) Canada’s emergency response benefit does nothing for migrant workers. The conversation, 6 May, http://theconversation.com/canadas-emergency-response-benefit-does-nothing-for-migrant-workers-136358.

    • Search Google Scholar
    • Export Citation
  • Kent, E.E., Ornstein, K.A. and Dionne-Odom, J.N. (2020) The family caregiving crisis meets an actual pandemic, Journal of Pain and Symptom Management, 60(1): e669, doi: 10.1016/j.jpainsymman.2020.04.006.

    • Search Google Scholar
    • Export Citation
  • National Seniors Strategy (2016) An Evidence-informed National Seniors Strategy for Canada, 2nd edn, http://www.nationalseniorsstrategy.ca/wp-content/uploads/2015/01/National-Seniors-Strategy-Second-Edition.pdf.

    • Search Google Scholar
    • Export Citation
  • Norris, S.S.P., Pfefferbaum, B., Wyche, K.F. and Pfefferbaum, R.L. (2007) Community resilience as a metaphor, theory, set of capacities, and strategy for disaster readiness, American Journal of Community Psychology, 41(1–2): 12750, doi: 10.1007/s10464-007-9156-6.

    • Search Google Scholar
    • Export Citation
  • O’Sullivan, T., Ghazzawi, A., Stanek, A. and Lemyre, L. (2012) ‘We don’t have a back-up plan’: an exploration of family contingency planning for emergencies following stroke, Social Work in Health Care, 51(6): 53151, doi: 10.1080/00981389.2012.681539.

    • Search Google Scholar
    • Export Citation
  • Pinquart, M. and Sorensen, S. (2006) Gender differences in caregiver stressors, social resources, and health: an updated meta-analysis, The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 61(1): 3345, doi: 10.1093/geronb/61.1.p33.

    • Search Google Scholar
    • Export Citation
  • Prime, H., Wade, M. and Browne, D.T. (2020) Risk and resilience in family well-being during the COVID-19 pandemic, American Psychologist, 75(5): 63143, doi: 10.1037/amp0000660.

    • Search Google Scholar
    • Export Citation
  • Sutter, M., Perrin, P.B., Peralta, S.V., Stolfi, M.E., Morelli, E., Peña Obeso, L.A. and Arango-Lasprilla, J.C. (2016) Beyond strain: personal strengths and mental health of Mexican and Argentinean dementia caregivers, Journal of Transcultural Nursing, 27(4): 37684, doi: 10.1177/1043659615573081.

    • Search Google Scholar
    • Export Citation
  • Yoon, H., Jang, Y., Vaughan, P.W. and Garcia, M. (2020) Older adults’ Internet use for health information: digital divide by race/ethnicity and socioeconomic status, Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 39(1): 10510, doi: 10.1177/0733464818770772.

    • Search Google Scholar
    • Export Citation

Content Metrics

May 2022 onwards Past Year Past 30 Days
Abstract Views 5 5 5
Full Text Views 49 49 49
PDF Downloads 47 47 47

Altmetrics

Dimensions