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Essentially invisible: risk and personal support workers in the time of COVID‐19

2020; Wiley; Volume: 42; Issue: 8 Linguagem: Inglês

10.1111/1467-9566.13203

1467-9566

Kate Rossiter, Rebecca Godderis,

Climate Change and Health Impacts

This commentary examines the intrinsic social dilemmas that present themselves in the face of pandemics and pandemic planning that are often highlighted through differential patterns of risk across a population. Specifically, we focus on the invisibility of what has become an essential labour force in many healthcare systems around the globe – personal support workers (PSWs). This article is informed by earlier analyses regarding sociality and risk: in 2012, we wrote an article in Sociology of Health and Illness about the gendered dynamics of frontline care-giving in relation to increased risk of infection during the 1918 influenza pandemic. That piece, entitled 'If you have a soul, you will volunteer at once: gendered expectations of duty to care during a pandemic' used newspaper and archival material from Brantford, Ontario a small Canadian city to explore the moral obligations placed upon women to provide frontline care and as a result women were at heightened risk given their increased exposure to disease. Understanding dynamics of care-giving in the 1918 influenza pandemic helped us illuminate gendered patterns of labour propagated through the language of moral responsibility that then became inequitably expressed on and through the bodily dynamics of disease transmission for nurses, other women who were called on to participate in nursing, and the families of these individuals (Godderis and Rossiter 2012). Returning to this analysis in light of COVID-19, and using similar data sources such as newspapers and organisational websites, we argue that the sustained and stubborn invisibility of particular caregivers is an important and telling pattern regarding care-giving and risk. Specifically, we examine the work and conditions of PSWs – a form of labour that did not exist in 1918 – to examine gendered dynamics of risk that have emerged during COVID-19. PSWs, who may be known by a range of titles such as 'healthcare aides' or 'nursing assistants', are common in countries such as Canada, Denmark, Australia, the UK and the United States (Zagrodney and Saks 2017). These healthcare workers engage in a variety of care-related task within personal homes and 'hybrid' healthcare facilities such as long-term care residences and may be hired privately or employed by an organisation (Lilly 2008). As discussed in further detail below, we maintain that ancillary healthcare worker invisibility is deeply tied to larger structural forces that shape the very meaning of who counts in calculations of risk, and whose labour is essential for the system but is so unseen as to not even be factored into these calculations. Indeed, we echo Einboden's (2020) assertion that 'public responses to COVID-19 are reproducing neoliberal rationales about what bodies matter' and that '[t]he virus shows the limits of biomedicine and the fragility of the for-profit orientation of healthcare systems'. (4). PSWs play an essential role in neoliberal healthcare systems that, due to austerity measures, require a large group of low-wage workers to undertake a range of intimate health and social care activities to ensure the wellbeing of communities (Kelly and Bourgeault 2015). Tasks performed by PSWs may include activities of daily life like dressing, bathing and toileting, as well as assistance with walking, medication reminders, light housekeeping and general social support. Some PSWs may also be found in more traditional medical settings, such as hospitals, assisting nurses and doctors with similar types of care tasks and additional clinical care such as taking blood pressures or temperatures (Personal Support Network of Ontario 2020, Ontario Personal Support Workers Association 2020, Zagrodney and Saks 2017), and however, PSWs also form the staffing backbone of many organisations that provide intimate, daily care – in particular, residential spaces such as long-term care facilities (LTCs). Within Canada, there are organisations that provide PSWs with resources and assist them with networking (Personal Support Network of Ontario 2020). Additionally, the Ontario provincial government has established curriculum requirements that PSW training programmes must meet in order to be approved (Kelly and Bourgeault 2015). However, similar to many other countries, Canadian PSWs are unregulated healthcare workers and thus are not certified or registered, nor do they have a governing body that advocates for their status as workers. Zagrodney and Saks (2017) argue that PSW work can be considered part of the precariat – an emerging class of workers that is defined by features such as low wages, job insecurity and short-term employment including work that is often contractually limited, part-time and on-call. Due to the part-time and on-call nature of the work, Kelly and Bourgeault (2015) note that the exact number of PSWs employed in any given country at one time can be difficult to count; however, data collected by the Ontario Ministry of Health and Long-Term Care show that the number of PSWs and similar healthcare aides in the province well exceeds the number of nurses and doctors. Despite this, PSWs hold a low status within the 'healthcare hierarchy' below accredited healthcare workers such as registered practical nurses (Kelly and Bourgeault 2015). Moreover, it is important to note that PSW work is not done by just any 'body'. Personal support and care work is divided along lines of gender, age and race. Internationally, Zagrodney and Saks (2017) and Saks and Allsop (2007) note that PSWs tend to be older, identify as women and are racialised, and similarly in Canada, Kelly and Bourgeault (2015) observe that PSWs are largely women-identified and racialised people and/or immigrants to Canada. In the early spring of 2020, as the world was gripped by the early stages of the COVID-19 pandemic, Canadians, along with others across the global north, bore witness to increasingly horrific and desperate scenes unfolding within LTC facilities meant to house those who have round-the-clock care needs. Residents of such facilities had, in some cases, been left ('abandoned' by one newspaper's assessment – see Bilefsky 2020) by paid caregivers who were too frightened, exhausted or sick to come to work. Staggering rates of COVID-19 inside Canadian LTC facilities were matched by heartbreaking and maddening accounts of residents left to fend for themselves, starving, traumatised and covered in faeces (Henriques et al. 2020). These scenes pointed, rightly, to underlying labour conditions within such facilities that were at the breaking point prior to the assault of the pandemic and which could not bear the strain of additional complication and risk. Conditions regarding the work of LTC nurses and PSWs came briefly into focus within public discourse when widely circulated Canadian news sources delved into the inherent structural problems with these roles (Keung and Miller 2020). The COVID-19 crisis pushed the stories of worker burn-out (CBC Radio 2020), grief, fear and exhaustion (CBC News 2020, Grant 2020, Frketich 2020) and increased risk (Rinaldo and Jones 2020, Stacey 2020) into the public eye. However, given rapid news cycles and an abundance of news, coverage moved on, and the astonishing impact of COVID-19 in LTC only fleetingly illuminated these troubling dynamics of intimate care and risk. At the same moment, a smaller, more personal drama was playing out in the life of one of the authors of this commentary, Kate Rossiter (KR), that began to illuminate for the authors how dynamics of risk in the COVID-19 pandemic were being unevenly distributed. Alongside full-time work and mothering two small children, KR also provides care for a parent with early-onset Alzheimer's. By her own request, this parent lives in a LTC facility, with as much independence as possible. This means that KR's mother's daily tasks are supported by a myriad of nurses and PSWs. All of the PSWs who provide this care are racialised women. Like so many other facilities across the country, KR's mother's home experienced a COVID-19 outbreak, and KR and her family were forced to remove her mom from her home and provide care themselves during this period. Fortunately, this home was able to get the outbreak under control relatively quickly and institute new infection control procedures, which allowed for KR's mother to return to her home. These procedures included a regimen of near isolation in order to keep other members of the facility safe. This has included a ban on family and friends visiting – a limit that remains in place at the time of writing. Curiously, however, at this early stage of the pandemic, PSWs did not seem to be accounted for in the infection control procedures and thus in the organisation's calculus of risk. Considered essential workers, PSWs continued to move in and out of the facility, travelling between suites within the LTC, in some cases between different LTC facilities, and with the outside world. PSWs perform work that remains physical, exhausting and may be considered some of the most risky in terms of the spread of infection because of its intimate nature that demands very close contact between healthcare worker and patient. In comparison, nurses and doctors that work within LTCs almost always only work in a single facility, and their health status is carefully monitored. Moreover, many of these healthcare professionals are themselves involved in decision-making in relation to the infection control procedures and, as a result, the conditions of their work and their lives are used to create the model that is the basis for new procedures. Given this invisibility of PSWs, KR and her brother joked that in order to see their mother all they needed to do was call themselves her PSW – a joke cruelly underscoring the lack of professional regulation and standardisation for these healthcare workers. In other words, while KR and her family were factored into the calculation of risk within the institutional space and positioned as risky bodies–bodies that might act as vectors of disease and contamination – PSWs remained discursively risk-less further underscoring a kind of social and symbolic invisibility. Thus, despite the brief focus on the oppressive and precarious conditions of labour circumstances for PSWs within national news stories, the author's direct experiences made it clear that these healthcare workers remained like ghosts in the machine of long-term care, inhabiting a simultaneous space of both essentiality and invisibility. To better understand the nexus of risk, invisibility and essentiality, we turn to consider both the meaning and the role of invisibility vis-a-vis care-giving work deemed 'essential'. Invisibility as we are construing it here speaks to the ways in which PSWs are positioned as workers whose risk in terms of disease transmission is less worthy of consideration and collective protection from undue risk. While doctors, nurses, and first responders are generally lauded as heros (Einboden 2020) and these professionals working conditions are used as the basis for deciding on proper infection control procedures, such as access to adequate personal professional equipment, there was only fleeting public attention paid to PSWs. Given what we have observed during the COVID-19 pandemic, PSW invisibility in this sense is noticeable and important to take note of in a few ways. First, many PSWs are permitted to come and go from care facilities with little by way of either protection or vetting for exposure or symptoms. In some places, PSWs may be screened for symptoms and provided a mask upon entering a workplace, but at many others they simply move in and out of the space – this holds particularly true for private PSWs hired by family members to provide focused or individualised care over and above what the facility may offer. This lack of attention gives PSWs a ghost-like feel; while others (friends, family members) are left outside the space of the institution, PSWs come and go, as if their bodies are somehow less risky – less risky in terms of bringing infection into the facility and less at risk of becoming infected themselves. As such, it seems PSWs are generally less worthy of social consideration when we think about who requires protection. They are, in this sense, an 'absent presence' – a presence which is, on one hand, necessary for the provision of care, and on the other hand, they are left absent from social configurations of risk assessment and concomitant professional protection. This lack of collective attention is further illuminated by ongoing public concern for other professional groups whose work involves prolonged, close contact with potentially risky populations. Consider, for example, the (rightful) public outcries regarding teacher safety as schools across the globe struggle with reopening plans following COVID-19 shutdowns. The issue of teacher safety, unlike PSW safety, is highly visible within public discourse and thus receives social consideration and concern. Arguably, this kind of professional visibility aids in the fight for scarce public resources. Second, limited professional organisation and its resulting invisibility of PSWs as a legitimate healthcare profession heightens risk of infectious transmission and potentially obscures the relationship of PSWs to infectious conditions. While there are some groups within Canada, such as the Personal Support Network of Ontario (2020), that help to organise and provide resources for PSWs, there is no overarching body that represents and advocates on behalf of all those who perform personal support work. Conversely, other high-risk healthcare professions including dentists, dental hygienists and nurses are, from the outset, afforded more professional protections given the social legitimacy and professional regulation of their jobs. Unions and regulatory bodies fight on behalf of their membership, setting standards for pay, decrying especially risky working conditions and demanding access to, for example, adequate personal protective equipment (e.g. see The Canadian Dental Hygienists Association 2020). With no such organisation to provide organised forms of support, PSWs are often left to make their own decisions in this regard, or even to provide their own PPE in private care-giving arrangements. Further, while nurses and dental professionals spend shorter periods of time with patients during which the use of PPE is helpful and manageable, PSWs often spend hours with a patient, tending to the most intimate forms of bodily care, and using PPE may not be manageable in the same way. Finally, many PSWs face other forms of precarity that limit their ability or desire to push back against risky labour conditions thus rendering them even more voiceless in the face of problematic work conditions. Chief among these in Canada is migration status – many PSWs do not have permanent residency and thus face deportation if work ends. These intersecting sites of vulnerability limit the ability to self-advocate or create safer boundaries to mitigate against workplace risk (Skodic 2020). Thus, both the social position and the structure of this labour makes PSW work particularly risky while at the same time almost entirely invisible in calculations of risk. This lack of collective attention is clearly no accident. PSWs are considered essential service providers – that they move in and out of institutions makes as much sense as any other essential worker moving in and out of their respective workspace. However, we argue that the level of PSW invisibility is not only professionally different, but indeed, critical to the maintenance of PSWs as an underpaid, under-supported and potentially exploited labour group. Einboden (2020) notes that these dynamics are tied to labour market needs that pre-date the COVID-19 crisis: 'The imposition of a business model on national healthcare services mean that they are now run "lean," with limited human resources, lack of adequate space, inadequate laboratory services, limited personal protective equipment, and outstanding equipment orders that have been ignored for months or even years'. (4). Lack of resources, however, does not mean that the labour itself is not essential – thus this kind of social and discursive invisibility regarding risk is what allows PSW labour to remain both essential and inadequately protected or supported on multiple fronts. Invisibility, in other words, is key to essential work continuing in the face of COVID-19 given government decisions to limit healthcare budgets and impose austerity measures for years prior to the COVID-19 crisis. This risk bears out in patterns of COVID-19 infection. The brunt of the COVID-19 pandemic thus far in many Western nations has been born by those inside LTC facilities – crucially this includes both residents and staff. While infection rates change daily, healthcare workers globally have faced higher rates of illness than the general population. When this category is further broken down, it appears as though ancillary healthcare workers bear the greatest burden of morbidity and mortality. For example, the Canadian Federation of Nurses Unions (2020) keeps an updated 'in memoriam' page for healthcare workers who have died of COVID-19 in Canada and, as of the last update the union made on 14 July 2020, 14 of these 16 are PSWs and unregulated ancillary healthcare workers. The burden of these losses is further underscored by the invisibility of this excess risk. For example, within Canada, the Alberta Federation of Labour has ranked what are considered the most risky forms of work in terms of COVID-19, and, despite this excess mortality, this organisation has failed to even recognise PSW as their own category of 'work' within this list (Hall 2020). In 2012, we argued that women's work during the 1918 influenza pandemic was deemed essential but that the relationship between essential care work and heightened risk was obscured. In light of COVID-19, we assert that PSW care work – a role that is primarily filled by racialised women – occupies a similarly essential, and yet even less socially visible, role in 2020. This invisibility, we argue, is in fact imperative as a means of keeping this essential labour pool under-supported and readily available, and in the same moment, obscures PSWs as potentially 'risky' bodies: bodies at risk to both transmit and acquire infection. Based on this analysis, we argue that one of the central question thus remains: how do we resituate the value and benefit of care work done by gendered and raced bodies – particularly the type of work that is deeply tied to intimate forms of bodily care? Re-imagining the social valuation of this kind of work is crucial. Zagrodney and Saks (2017) argue that 'Given [PSW's] central role in healthcare delivery and service integration, they are therefore pivotal globally to wellbeing – not least in relation to the growing ageing population, which increasingly has multiple chronic conditions' (33). If this is, indeed, a critical and essential pool of labour for an ageing population and others in need of assistance, it is our collective ethical imperative to consider the ties of intimate bodily care to risk and precarity, and to make visible a form of social invisibility that has mortal consequences for caregiver and recipient alike. The data that supports the findings of this study are available in the supplementary material of this article.