key: cord-345737-b4r0jyjo
authors: Phillips, Dominique; Paul, Gillian; Fahy, Majella; Dowling-Hetherington, Linda; Kroll, Thilo; Moloney, Breda; Duffy, Clare; Fealy, Gerard; Lafferty, Attracta
title: The invisible workforce during the COVID-19 pandemic: Family carers at the frontline
date: 2020-05-15
journal: HRB Open Res
DOI: 10.12688/hrbopenres.13059.1
sha: 
doc_id: 345737
cord_uid: b4r0jyjo

This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness. In many cases, family carers are supporting those who are considered most at risk in this pandemic meaning carers must reduce their own risk of infection in order to protect their dependent family members. The temporary reduction of some home care services, as well as school and creche closures, means that family carers are providing increased levels of care with little or no support. At a time when both worlds of work and care have been dramatically transformed, we wish to shed light on those who are currently balancing paid employment with a family caregiving role. We argue that there is much to be learned from the recent work restrictions that could benefit employees, including working family carers, beyond this pandemic. We also wish to build on the potential positives of a transformed society and encourage policy makers and employers to focus on what is currently being implemented, and to identify which measures could be used to create a bedrock of policies and practices that would offer robust and effective support to family carers. It is hoped that family carers will receive greater recognition for the significant role they play in society, providing essential care and alleviating the strain on health and social care systems, both during and post the COVID-19 pandemic.

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The views expressed in this article are those of the authors. Publication in HRB Open Research does not imply endorsement by the Health Research Board of Ireland.

Although acknowledged as 'key care partners' (Department of Health, 2012), family carers are often caring at the invisible level of health and social care systems and are continuing to be 'unseen' throughout the coronavirus disease 2019 (COVID-19) pandemic. Family carers provide essential support to people due to age-related issues, disability, addiction, mental health difficulties and chronic illness. These carers are alleviating pressure on increasingly over-stretched health and social care systems. In Ireland, it is estimated that between 4.1% and 10% of the population provide unpaid care (CSO, 2016a; CSO, 2016b). Figures released by Care Alliance Ireland (2019) suggest that as many as 391,260 people in Ireland are providing care to a dependent relative. The value of informal care in Ireland has been estimated at between €2.1 and €5.5 billion per year (Hanly & Sheerin, 2017), which gives some indication of the significant contribution carers make to society. The role of family carer continues 7 days a week, 365 days a year, regardless of public health and social measures such as school closures, restricted travel and business closures due to the national-health emergency.

As we now work together in a national response to control the transmission of COVID-19, this unpaid family care continues to be the backbone of care provision in the community. In many cases, people in receipt of this care are members of 'high-risk groups' (Health Service Executive, 2020) and are at risk of developing serious illness if they contract COVID-19. As a result, carers are now providing even more support, while also under increased pressure to protect themselves from infection and prevent transmission to the person they care for. This presents many challenges particularly around providing personal care. Carers have had to adapt quickly as this pandemic has unfolded, often without clear guidance or personal protective equipment (PPE). Confinement that has been imposed on many, particularly on older people and those in need of support, may be very distressing, creating incredibly challenging home situations for some family carers. 

In Ireland, the majority of carers (54.6%) are in the labour force (CSO, 2016a) and it has been estimated that as many as 1 in 9 employees were balancing work and care prior to the onset of this pandemic (Family Carers Ireland, 2019). Factors such as an ageing population, more women participating in the workforce and longer working lives mean that we are likely to see an increase in the demand for care and those who balance work and care ( In response to the COVID-19 pandemic, the worlds of both employment and caregiving have been dramatically altered. Family carers are facing unique and unprecedented challenges in addition to the many pressures already associated with balancing work and family care. It is important to take cognisance of the considerable variation in the work-care situations that family carers may be facing. Many family carers are members of the 'sandwich generation' and are caring for both their own children and ageing parents. The challenge of managing these responsibilities alongside paid employment has been exacerbated by school and creche closures and the temporary withdrawal of other services such as respite and home care. Some family carers may be experiencing significant loss of income, and family carers who are considered 'essential workers' may feel conflicted and be concerned about leaving the home to go to work and risk infecting their loved ones. Family carers who may be employers or business owners may also be finding their multiple roles incompatible at this time of increased stress and uncertainty. Given the current suspension of so many of these key services, many carers may now be at an increased risk of employment exit. It is imperative that these individuals receive the appropriate services and financial support. Currently (7 th May 2020), carers who 'voluntarily' leave employment are not entitled to the Pandemic Unemployment Payment (PUP) (€350 weekly) (but may be entitled to apply for another welfare payment, paid at a lower rate than the PUP).

It is important to acknowledge that employers may not be aware of those who have caring responsibilities among their workforce. Research suggests that employees may be reluctant to identify themselves as carers due to perceived stigma or fear of negative career consequences (Tehan & Thompson, 2013).

This may be a source of great stress for some employees as they try to maintain the same workload with the additional strain of an increased 'care load'. As this pandemic continues, employers and line managers, who have a responsibility to look after the wellbeing of employees, need to be understanding and find ways of sensitively opening discussions around care responsibilities and managing workloads.

Family carers themselves may be developing strategies such as making informal arrangements with line managers, taking parental leave, carers leave, sick leave or annual leave to help reconcile work and care. The state together with employers may need to consider how best to ensure that these employees are not unintentionally penalised, financially or otherwise, while providing this essential frontline service in the community. This seems reasonable considering the billions of Euros family carers save the state through the provision of unpaid care (Hanly & Sheerin, 2017).

It is worth noting that recent work restrictions may not be an inherently negative experience for all. In fact, for some working family carers, there may be benefits associated with working from home, which may be enabling them to reconcile work and care more effectively. For example, working from home cuts down on commute times, allowing carers to spend more time with the person they care for. This applies particularly to carers who predominantly provide supervision and companionship to their relative, and whose assistance is required for just a few hours a day. Working and caring from home may also mean that care responsibilities can be more easily shared with other household members, helping to alleviate the pres- Flexible working has been identified as one of the most effective strategies for assisting family carers in reconciling their caregiving and working responsibilities (Eurocarers, 2017). However, working from home will not fully mitigate the increased strain that carers are under as they attempt to reconcile work and care during this pandemic. Without the appropriate supports, the provision of PPE equipment and the continuation and reinstatement of home care services, family carers are carrying an unacceptably heavy burden which is likely to have detrimental consequences for their physical, mental and financial wellbeing. Moreover, even when current restrictions are loosened and many people return to more familiar ways of working, some members of our community will continue to be at risk and will need to restrict their physical interactions with others for months to come. When non-essential workplaces begin to reopen, some groups of employees, such as family carers, may be reluctant to return to their place of work and risk carrying the virus home to their family. It is likely that COVID-19 will be a significant issue for working family carers for some time.

Despite the undisputed and varied challenges associated with this global health crisis, we also have a unique opportunity to maximise on learnings from the ways in which our home and work lives have been dramatically transformed. In the space of just a few weeks, remote working and working from home have become more normalised and ubiquitous than we could have ever previously imagined. Some employers have explored remote working for the first time and in many ways they have had to be more flexible than ever before. Therefore, the COVID-19 pandemic can offer us new insights, as many jobs which were previously not considered conducive to remote working have now had to rapidly become so. Similarly, lessons learned from COVID-19 may also help to inform the implementation of the EU's Directive on Work-Life Balance for Parents and Carers. This Directive, which was adopted in June 2019, sets out minimum requirements related to parents and carers including the introduction of a minimum of 5 days of carers' leave each year for working family carers and the right to request flexible working arrangements for the purpose of providing care. Learning from the widespread implementation of flexible work arrangements may help to make workplace policies more accessible and responsive to employees' needs in the future. If utilized effectively, the lessons from this global pandemic could help to foster carerfriendly workplaces and lead to more equitable work conditions that are likely to benefit all employees regardless of their care responsibilities.

While the full implications of the pandemic may take some time to determine, further research is warranted to ascertain the immediate and long-term impacts on family carers. For example, how will the cumulative burden from caregiving, economic strain, pressures on physical and mental health, and living with very stringent public health restrictions impact family carers' resilience and ability to cope? Also, how will the pandemic impact young carers, their health and wellbeing, and their future career prospects? In particular, there is a need to understand the longitudinal impact, and the differential impact on working family carers. Are family carers more vulnerable to job losses as a consequence of the pandemic, and therefore have no choice but to become full-time carers to their loved ones? How will the pandemic affect certain groups of carers, such as the self-employed or female family carers in the labour market? Further research is required to ascertain the mitigating and positive factors emerging from the current situation in order to minimise potential inequalities and protect carers' capacity to continue to provide essential care.

Throughout this pandemic, communities and families have worked together to provide key support to those who are most in need. As a society, we have pulled together to slow the spread of the virus and protect our most vulnerable citizens. As a consequence, previously invisible levels of health and social care delivery, including the contribution of family carers, may now become more widely acknowledged and recognised. By viewing this pandemic as an opportunity to inspire positive change, we may help to foster more caring workplaces, communities and society as a whole.

The CAREWELL project is a four-year research project being undertaken by UCD, in partnership with Family Carers Ireland, to promote health and wellness among family carers in the workplace. The HRB-funded project also aims to examine strategies that enable family carers to combine caregiving responsibilities with work. For more information, please email CAREWELL@ucd.ie and visit the website www.carewellproject.com.

The letter is not solely concerned with working family carers. The first part addresses the challenges for family carers generally during COVID-19. Since mid-February when the first public health advice was issued by government to 'protect yourself' against the COVID-19 by regular handwashing, good respiratory hygiene and not touching the face, family carers have been at the frontline of the national emergency. This Open Letter draws attention to the additional care load of, the increased pressures on and many challenges unfurled before family carers as a result of COVID-19. Insights from studies on the experiences of family carers of caring during COVID-19 and the profound impact that it is having are only beginning to emerge. The Open Letter refers to the survey undertaken by Family Carers Ireland examining the family carers' experiences of caring in Ireland during the COVID-19 pandemic (which has since been published). The findings from this survey indicate the significant impact of caring through COVID-19 for family carers (Family Carers Ireland, 2020 ) and reinforce the rationale of this Open Letter to make family caring more visible and to make a case for protecting the physical, emotional and financial wellbeing of family carers in order to sustain care arrangements.

One point to be addressed in this first part of the letter is as follows. While it specifically highlights young carers as a particularly vulnerable group, there is no specific reference to older family carers. The only reference to older people is in relation to 'cocooning', and the potential to lead to the need for increased 1 reference to older people is in relation to 'cocooning', and the potential to lead to the need for increased support and care by this group. While this is an important point, concerns have been raised that the discourse around older people during the COVID-19 crisis has been dominated by messages of frailty and vulnerability (e.g. O'Shea, 2020 ). As data released by TILDA during COVID-19 has shown, 31% of over 70s provide help and care for their spouses, relatives (not including grandchildren), neighbours or friends (McGarrigle ., 2020 ). If this letter were to emphasise the significant contribution that older et al people make to society through their caregiving role, it could go some way to helping to rebalance this narrative and highlight the significant contribution that older people make to society in Ireland. Highlighting the contribution that older people make may also draw attention to the particular needs of and challenges facing older family carers, who have remained invisible throughout COVID-19, to the people they are providing care and support to, as well as other family members playing a secondary caregiving role who themselves may be working.

The second part of this letter focuses on working family carers (who we are informed make up more than half of all family carers, and as many 1 in 9 of all employees), the dramatic transformations in both formal work and informal caregiving as a result of COVID-19, and the unique challenges facing those combining working and caring. The Open Letter points to the evidence showing the benefits of enabling family carers to remain at work, and highlights the role and responsibilities of employers and the state in supporting working family carers and helping to moderate the additional stresses and strains that they are currently under. The Open Letter acknowledges the likelihood of increased employment exit for family carers as a result of measures such as the withdrawal of services, and the financial implications of this. Importantly, the letter stresses the considerable variations in work-care situations of family carers. As well as 'voluntary' exit from working, the authors may therefore wish to examine the drift into family caregiving during COVID-19 for some other workers who have lost jobs, either temporarily or permanently, or have experienced reduced working hours due to unprecedented closure of workplaces. As well as suddenly finding themselves in unchartered territory of family caring, returning to jobs or re-entering the labour market made be more complicated for workers who have taken on 'new' caregiving roles during the pandemic.

The authors note the benefits associated with working from home for some working family carers, such as increased time availability as a result of shorter commuting times. It would be useful to note findings from research such as that from the European Foundation for the Improvement of Living and Working Conditions (2020) which has shown that working from home does not always result in decreased working times, and for remote working to be sustainable, challenges such as overtime working need to be addressed, an issue that is especially pertinent for those combining work and caring. Time is really important to family carers, and in addition to considering how to make extra time available to family carers through workplace measures, it could be worth considering how certain issues around time could potentially be addressed through the reconfiguration of health and social care services (McDonald l., et a 2019) . Time taken up in this sphere has knock-on effects for working time. Technology may have a role to play in this regard.

Given recent evidence of the heavily gendered nature of caring and unpaid work in Ireland (Russell ., et al 2019 ), the gendered impact of the COVID-19 outbreak (Wenham ., 2020 ) and concerns that et al COVID-19 is fuelling gender inequalities, it would also be interesting to consider working family caring though a gender lens, and encourage policy makers and employers to take a gender informed approach to policy and practice changes aimed at supporting working family carers. A work-related issue facing women predominantly, but not exclusively, that has been highlighted by the COVID-19 pandemic is the combining of formal and informal caregiving roles, referred to as double-duty or triple-duty caregiving. Research conducted in the US before the pandemic found that relative to their counterparts without family caregiving roles, women with combined formal and informal caregiving roles reported poorer Research conducted in the US before the pandemic found that relative to their counterparts without family caregiving roles, women with combined formal and informal caregiving roles reported poorer psychosocial wellbeing (De Pasquale ., 2016 ), and it is likely that this has been exacerbated by et al COVID-19. Yet, jobs of workers with formal caregiving roles are unlikely to be amenable to remote working.

This Open Letter on family carers caring through COVID-19 is to be welcomed. As COVID-19 restrictions are eased, the authors have shown that there are many lessons to be learned and research questions that remain to be answered. It ends on a hopeful note that as Ireland emerges from the pandemic the contribution of family carers will be acknowledged and recognised.

Caring Through COVID-19: Life in Lockdown. Reference Source 2. O'Shea D: Principles in the COVID-world

PubMed Abstract Publisher Full Text

Are all factual statements correct, and are statements and arguments made adequately supported by citations? Yes

Where applicable, are recommendations and next steps explained clearly for others to follow? YesNo competing interests were disclosed.

Reviewer Expertise: Social policy, family care, health and social care, ageing and older people.

This is a timely and important article/open letter that sets out clearly and concisely the evidence on informal (unpaid) care provision in families with a specific focus on caring during the COVID-19 pandemic. The authors are right to highlight the experiences and needs of family carers in the way that they have in this article and I am happy to fully endorse its indexing in HRB Open Research. The article is clearly expressed, is on an important topic with clear evidence to back up the claims and dialogue.

Where applicable, are recommendations and next steps explained clearly for others to follow? Yes No competing interests were disclosed.

Reviewer Expertise: Informal caring, young caring, vulnerable and marginalised people, participatory research and research ethics.I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.