Person-Centered Home Care: Exploring Worker-Client Relationships Using an Intersectional and Critical Disability Framework

Abstract

More research is needed into how “person-centered care” (PCC) manifests in home care (HC) worker-client relationships. Qualitative data were collected at three time points from twelve HC workers and others to better understand how approaches to care shape the pathways of older adult HC clients with chronic conditions in two Canadian health jurisdictions. This paper uses critical disability and intersectionality frameworks to highlight ways in which PCC enables social and instrumental benefits for workers’ and clients. It also exposes difficulties in being flexible and developing interpersonal relationships because of HC policies. Workers also acknowledged risks when trying to prioritize client preferences, sometimes drawing distinctions between reasonable and unreasonable demands. Implications for enhanced training and support for workers around navigating flexibility and boundaries and using a relational approach to PCC are discussed, as are implications for policy-making that protect all parties.

What this paper adds

• • Critique of PCC based on home care worker perspectives

• • Intersectional and critical disability lens applied to explore worker-client relationship in home care settings and narratives about aging with “autonomy.”

Applications of study findings

• • Contribute to the training of home care workers, taking into account both cognitive knowledge (history and definitions) of PCC, but also affective understanding (how PCC in practice aligns with one’s values/beliefs/personal boundaries).

• • Provide theoretical support for policy changes that will support delivery of home care services for workers and clients.

Introduction

Canadian health and home care policies and training materials have been increasingly infused by an emphasis, at least in rhetoric, on person-centered care (PCC). Bolstered by broader shifts toward consumerism and patient choice, this movement aspires to replace medicalized power hierarchies with more holistic, less paternalistic approaches prioritizing the needs and perspectives of persons receiving care. With a growing number of older Canadians expressing a desire to age in place, PCC is now increasingly being employed in non-clinical domestic settings. Aging in place, if appropriately supported with home modifications and care arrangements, has benefits for physical and mental health (Lamas et al., 2021; Lee et al., 2020). The overall aim of this study was to understand how approaches to care shape the pathways of older adult home care clients with chronic and long-term conditions in Nova Scotia and Manitoba (i.e., will clients decline, improve, or maintain over time?). While conducting interviews for this study, and analyzing the data, it became clear that there is a lack of in-depth research exploring how PCC approaches manifest in daily home care realities from the perspective of home care workers (HCWs) (Gustafsson et al., 2021). This paper reflects such an analysis, employing a critical disability and intersectional framework to highlight the instrumental and social benefits of PCC for both workers and clients, but also its risks and tensions.

Person-Centered Care in Home Care Settings

Although precise origins of PCC are difficult to trace, it was initially associated with older adults and health care during the 1980s “culture change” movement in nursing homes (Koren, 2010) and is often attributed to Kitwood’s research about approaches to home care for persons with dementia (1998). Sociological analyses have tied it to the rise of patient consumerism in health care. Widely celebrated as a positive development, Moore et al. (2017) remind us that PCC is easier to define than it is to implement and “has more evangelists than practitioners” (p. 662). Nolan et al. (2004) echo this sentiment and have referred to PCC as an “oft-quoted but ill-defined concept… that may well perpetuate, rather than eliminate poor standards of care for older people” (p. 46).

In general, existing definitions conceptualize PCC practice as involving (i) a holistic (whole-person) focus; (ii) principles such as respect and self-determination, for instance, through offering flexibility and orienting to a person’s comprehensive needs, wishes, and values; (iii) understanding and maintaining personhood and sense of self, through continued social roles, meaningful activities, or personalized environments, and (iv) fostering positive relationships (Brookman et al., 2011; Kogan et al., 2016; McCormack & McCance, 2010).

Home care clients and workers who assist them often interact for years and develop meaningful relationships and “perceived reciprocity”—each party helping the other feel “known” (Lee et al., 2020, p. 136). Moreover, PCC in relationships between paid home care workers (HCWs) and clients has been shown to bolster client autonomy, improve “social connectedness and well-being,” enhance feelings of life satisfaction, and reduce feelings of loneliness—allowing care recipients to remain in their own homes, while simultaneously decreasing their sense of being a burden to their family members (Anker-Hansen et al., 2018; Lee et al., 2020, p. 129).

Strong client-worker relationships can be beneficial for both parties (Butler et al., 2012; Franzosa et al., 2019; Stone, 2000). Although developing close relationships over time can enhance workers’ ability to provide PCC, as they know their clients’ needs and preferences and adapt their tasks accordingly, this closeness, coupled with race, class, and gendered dynamics, can also result in increased emotional labor and other challenges for HCWs (Franzosa et al., 2019).

Theoretical Frameworks: Intersectionality and Critical Disability

Born out of the feminist movement, intersectionality emphasizes how multiple, intersecting social and cultural identities shape vulnerability to exclusion and subordination. In home care, workers often have multiple marginal identities. They are predominately female, often immigrants, and frequently precariously employed. Most lack structural power to negotiate their working or employment conditions and routinely experience racism, sexism, and harassment based on ethnocentrism and misperceptions of cultural incompetency and “low occupational status” (Harman, 2022; Nakaishi et al., 2013; Neysmith, 1996, p. (2). In domestic home care environments, work is “feminized” and interactions are essentially invisible to those outside. Relationships are uniquely intimate and familial—blurring lines between employer/employee in both positive and potentially dangerous ways—especially if HCWs are practicing PCC and putting client needs front and center. Crenshaw (2017), who first coined the term, describes intersectionality as “a lens through which you can see where power comes and collides, where it interlocks and intersects.” How then, to make the invisible visible in home care in order to “see” the power dynamics they describe?

One way of addressing this is to engage a critical disability lens when exploring the unique dynamic between HCWs and clients. Disabled people and disability activists have for decades been vocal about making visible these essential care relationships and the vital work paid caregivers provide. Doing so deliberately disrupts tidy “independent living” narratives and the tendency to frame (dis)ability as an individual deficit or as “unexpected or unfortunate” (Titchkosky et al., 2022, p. 15). As Garland-Thomson (2002) reminds us, (dis)ability is a unique “identity category” because “anyone can enter [it] at any time, and we will all join it if we live long enough” (p. 20).

Critical disability theory conceptualizes disability as a socio-political construction, rejecting medicalized approaches and individualized interventions to prioritize addressing social obstacles and environmental barriers that “disable” certain bodies and minds. By focusing on clients’ autonomy and the “independent living” aspects of the home care model, we inadvertently make invisible the important work and assistance offered by HCWs to older adults who are permanently or temporarily disabled. ¹ This narrative also suggests that those whose care needs increase and who therefore become more dependent on the care and assistance of others over time are necessarily on a negative downward trajectory, as if loss of aspects of one’s independence is always equated with tragedy.

PCC, if examined through critical disability and intersectional frameworks, reveals that the narrative is much more complex and considers not only the background/comfort needs/desires of clients but also those of HCWs providing home care. Ultimately, “person-centered” approaches to care hinge on the relationships developed (in accordance with or deliberately transgressing policies) between clients and paid caregivers. Interestingly, certain researchers (Nolan et al., 2004) have argued in favor of moving away from PCC models of care toward “relational” ones that recognize the importance of autonomy, but also remind us that we, each of us, belong to a “network of social relationships” and are deeply interconnected with and dependent on others (p. 47).

Methods

Manitoba and Nova Scotia provinces were chosen for this study because of their similarities in population size and their differences in how home support was delivered and the cost of the service. All provinces and territories within Canada publicly fund formal home care programs, though services and fees for support vary by jurisdiction. Generally speaking, funded home care includes personal care (e.g., bathing and dressing), and less often (and increasingly being scaled back), help with household tasks (e.g., cleaning, laundry, and meal preparation). Home care programs are often designed to complement not substitute care older adults receive from family or friends (Anker-Hansen et al., 2018).

As part of a larger project exploring home care client trajectories in Manitoba and Nova Scotia, qualitative data were collected from 12 care “constellations” (blinded). Each constellation served, essentially, as a mini case study placing the client at the center, and also triangulating their stories and perspectives with interviews with others explicitly involved in their care (agency coordinators, supervisors, HCWs, and family/friend caregivers where applicable) (Flyvbjerg, 2006). To be eligible for the study, home care clients had to be over the age of 60 years, cognitively well, and receiving home care for at least one month (see Table 1). Case/care coordinators who agreed to participate in the study were asked to identify and send recruitment letters to clients who they felt might be willing to participate and would improve, maintain, or decline over the next 18 months.

Table 1.

Client Information.

Client	Gender	Age	Time Receiving Home Care	Type of Support	Home Support Hours Per Week
Manitoba client 1	Female	85–89	5 years	Morning and evening personal care. Bath twice a week. Intermittent nursing	9
Manitoba client 2	Male	95+	3 years	Morning and evening personal care. Compression stockings	7
Manitoba client 3	Female	85–89	2 years	Morning and evening personal care. Compression stockings. Light housekeeping	9
Manitoba client 4	Female	65–74	15 years	Morning care (transfer from bed to wheelchair via a sling, dressed/bathed, breakfast, 45 minutes of physiotherapy). Midday and evening (heat and serve, catheter care). Night-time (toileting and transfer to bed). Bath 2 times per week. Nursing care 3 times per week	55
Manitoba client 5	Female	65–69	5 years	Morning and evening personal care. Medication assistance at lunch and supper	10.5
Manitoba client 6	Female	95+	2 years	Morning and evening personal care. Compression stockings. Light housekeeping	9
Nova Scotia client 1	Male	80–84	6 years	Light housekeeping. Bulk meal preparation	3
Nova Scotia client 2	Female	80–84	2 years	Light housekeeping	2
Nova Scotia client 3	Female	60–64	2 years	Personal care. Light housekeeping. Bulk meal preparation. Oxygen services	30
Nova Scotia client 4	Female	75–79	8 years	Morning personal care with shower. Compression stockings	5.5
Nova Scotia client 5	Female	60–64	6 years	Light housekeeping. Home oxygen. Nursing services for approximately 1 month after colon surgery	1
Nova Scotia client 6	Female	60–64	1 year	Personal care and light housekeeping and laundry. Received increased services (not specified) after her surgery, and a hospital bed and sock aid	5

Semi-structured one-on-one interviews were conducted in-person and on Zoom or telephone (due to the COVID-19 pandemic) with members of the care constellation at 3 points in time (2019, 2021, and 2022). Time 1 data were collected prior to COVID-19, while Time 2 and 3 data were collected during the pandemic. All interviews were recorded and transcribed into MS Word for later analysis. Descriptive summaries were written for each interview (N = 136) as well as for each “constellation” (N = 12) at each time point. In this paper, interviews with HCWs were the primary source of data with occasional reference to transcripts of the home care clients’ experiences when themes related to PCC were mentioned. The cumulative number of HCW interviews over 3 points in time was 31 with a total of 17 HCWs interviewed (as on occasion HCWs changed and in one case no HCW gave consent to be interviewed).

The Manitoba study site (Winnipeg) ethics was approved by the University of Manitoba Psychology/Sociology Research Ethics Board #P2018:146 (HS22462). The Nova Scotia study site ethics was approved by Nova Scotia Health Research Ethics Board (#1024409) and Mount Saint Vincent University Research Ethics Board (#2018-209).

Data Analysis

Summaries and/or transcripts were reviewed by team members in each province, and discussed in analysis meetings, where themes were inductively identified and compared among team members, across constellations and between provinces. At Time 1 analysis, person-centered care was identified as one theme that should be further explored, and questions regarding person-centered care were integrated into the Time 2 interview guides.

Other publications emanating from the overall project’s primary aims have centered on policy and home care client perspectives, (blinded). This paper’s analysis is primarily based on interviews with HCWs who provided examples of what PCC meant to them and their work.

Findings

During interviews with HCWs, some brought up the term PCC spontaneously and shared examples relating it to their own practice, while others revealed they had never heard the term. In some cases, the research team deductively identified examples of care (as described by various participants) that aligned with existing definitions of PCC. Several reoccurring themes were derived in this way both from HCWs’ examples as well as from our analysis of the data more broadly, including common sense; fictive kin; and HCW risks. Whether or not HCWs referred to PCC by name, almost all HCW participants spoke about, and often critiqued its principles in ways that aligned well with intersectional and critical disability scholarship and assumptions.

Person-Centered Care as using “Common Sense”

HCWs noted that existing policies or institutionalized practices (such as task sheets) that regulate designated tasks and client-worker relationships discourage the sort of closeness and respect typically associated with PCC. These policies were viewed as disregarding what they consider to be “common sense” conscientious responses to clients’ physical and emotional needs. As such, to provide PCC, HCWs recounted needing to use their own judgment in the moment, including bending rules to help clients. As part of this process, many HCWs invoked implicit ideas of themselves as “caring” in contrast to both “uncaring” others (i.e., those who adhered more closely to the rules and policies imposed, and/or who lacked “common sense”) and “uncaring” systems. One HCW said:

“I just try to do the tasks, but I’ll take somebody’s garbage out and it’s not on the list but I do it because I look at it this way, I’m walking by the garbage bin, and I figure, would I want this person to fall taking the garbage out when I’m walking by it anyway? Because she’s told me that some people have said, one [worker said], ‘well, it’s not on my task sheet.’... But I figure, you have to use your common sense. This job is a lot of common sense, too...”

Another worker articulated:

“Well, I mean, they give us tasks sheets of...what we can do… Our AM care, washing them up, doing this doing that… If I go and blow dry the lady’s hair after I give her a bath, you know, like that’s not allowed… You’re not to put a braid in there or a ponytail. But a lot of those things only take 5 s to do, and sometimes you just do it. I mean, to follow all the rules would be almost next to impossible.”

The vast majority of examples of PCC described by worker-participants in this study revealed this tension: to be truly person-centered, workers trusted their own common sense above agency policies and relied on their own judgment and careful rule breaking/bending to meet principles of client-centered care.

Due to the geographic dispersion of worksites, HCWs in our study were rarely observed by supervisors. For the most part, workers appreciated this as it allowed them to make decisions in the moment based on client requests and needs and their own instincts. However, the complex, highly skilled decision-making that informs these actions beyond task sheet checklists can go undocumented and hence contribute to the “invisibility” as articulated by intersectional feminist theory. Likewise, framing this work as “common sense” or instinctual can mask the vital skills (and emotional and mental labor) involved in these decisions. Though workers were clearly aware of the risks associated with rule breaking/bending they also expressed pride when defining themselves against uncaring systems and others.

Despite larger-scale invisibility, moments of deliberate rule-bending and actions of care that go above and beyond task lists are often noticed and deeply appreciated by clients and families. For instance, four clients in our study explicitly stated how much these actions meant to them. One client after praising their HCWs indicated: “…they [HCWs] tell me, ‘oh we’re not supposed to get close to our clients’, which is actually, I feel impossible…” Several clients also noted that they felt protective of their workers who were bending rules in order to connect with and assist them. In one case, a client was so fearful that their worker would be reprimanded if they disclosed some of the rule-bending that took place, that they requested we not share specific examples in project publications or presentations.

Person-Centered Care as Fictive “Kinning”

HCWs routinely enter clients’ domestic space and perform practical tasks that are “feminized” and traditionally associated with family members, including help with personal care. Engaging in these often-intimate tasks, workers and clients can develop close relationships. Whereas in the previous section, HCWs’ comments oriented around the idea of going beyond the task list to address holistic need, here HCWs also associated PCC with achieving the equivalent of “fictive kin” (Karner, 1998) relationships with clients. When asked about their approach to home care, for instance, one HCW said they picture clients as if they are their parents and treat them accordingly. Another HCW (who referred to themself as a “social chameleon”) described PCC as

“…being who they need you to be rather than a care worker. Like that’s such a general vague term. A care worker is someone who showers you, end of story - but to some people I’m like a granddaughter. I go and they get a hug and a kiss and ‘how are you, oh how is papa doing’ and sometimes I’m a friend who shows up with [coffee] and we gossip about the goings on… I love rules but I also break a few of them…”

Clients also described examples of workers who would for instance show up for a shift with treats for them or greet them after they had returned from a lengthy hospital stay.

Fictive familial relationships have the potential to be beneficial for both parties, yet such examples also violate agency policies designed to prevent workers and clients from getting “too close.” As one HCW expressed:

“The Home Care Attendant will do whatever is on the task sheet, but sometimes they [the clients] aren’t asking for all the tasks to be completed. Instead, they just want you to listen. And it makes a big difference, you can see that they feel better. Some people talk about their life, children, and families. And ask about me too. But you’re not supposed to share too much about yourself.”

Indeed, agencies often even deliberately schedule different workers for visits to the same home so clients don’t become accustomed to seeing the same person too regularly. Although the HCW cited above refers to breaking agency rules about personal sharing, they also expressed some ambivalence about such policies, acknowledging why they are in place:

“(if you get) too close to the client... they can start to take advantage… ask you to do things that we’re not really supposed to do, or maybe we don’t really want to do… if you’re a true care worker at heart, you’re not going to be able to say I can’t do that for you. It’s very hard to say that.”

Though some workers viewed existing relationship guidelines as beneficial, others resisted them and lamented that clients they care deeply about were not offered the emotional care and connection they needed. In one instance a client was asked to stop their friendship with a neighbor who had become their HCW—both parties felt that this situation was regrettable, but due to staffing shortages in the region, options were limited. In another case, one former worker had been disciplined before our study began. The client had needed a household appliance and the worker took it upon themself to help the client acquire one from a community donation program. The family/friend caregiver in this client’s life recounted the story:

“... [the employee’s agency] found out exactly kind of how close she was getting, and she’s no longer able to work with her, which I don’t think is right because, what does a caregiver do? They’re supposed to be there to help them. But I guess there is, kind of a boundary that she can’t go over - or basically get in, do what you need to do and, and that’s it, and get out. Which personally, I don’t think that’s right. I mean ... I’m the same type of person. If I see somebody struggling or whatever and if I can ... help them, then I’m gonna help them.”

As an indication of the positive impact of close relationships for clients, one client who has limited mobility and various ailments, described themself as “heavy set.” When they first began receiving home care services, they had difficulty overcoming their “shyness” and around showering. They described one worker who was particularly attentive to their feelings and fears and helped them immensely by talking through things beforehand and reassuring them. Over time and through their relationship, this client found bathing easier and by the third year of our study, they were comfortable enough to request an additional shower each week.

Overall, this analysis indicated how worker-client relationships were much more nuanced than simple employee-employer “by the book” transactions, and involved (often invisible and highly skilled) emotional labor to building connection while navigating around or beyond policies hindering this aspect of PCC.

Risks and Challenges of Person-Centered Care Approaches for Workers

Workers are often left on their own to navigate balancing person-centered care approaches with policies and task sheets that do not necessarily align with PCC principles. While some workers appreciated the autonomy that accompanies this relative dispersal and invisibility, they also expressed there was the potential for workers to be “taken advantage” of by clients who made unreasonable, unsafe, or unjust demands. Several HCWs shared that the line between providing PCC and being taken advantage of was particularly difficult to draw with clients who were outspoken advocates for themselves and their needs.

One client in our study (who was referred to as being “aggressive and confrontational” and “her way or the highway” by the agency supervisor) put the HCW involved in their care in a difficult position. This client was scheduled to receive personal care/bathing at 8 a.m. several mornings a week. Often when the HCW arrived, this client would still be asleep and would express that they did not want to rush to get in the bath and first needed to eat breakfast with the HCW. The worker involved in this situation felt torn. It was clear that this client likely needed companionship and connection in the morning before getting in the shower. At the same time, even if the HCW wanted to offer this more “personalized” approach to morning care, taking this extra (non-allocated) time would have a negative impact on their schedule and other clients for the rest of the day. This HCW reported finding these visits stressful as a result. In this example, what might from one perspective be considered self-advocacy and a desire for relational connection could also be interpreted as “manipulative” and “confrontational” because of systemic constraints.

Another example from the data highlights how dissonance can emerge in understandings of the meanings of PCC. For instance, a HCW interpreted comments from one of their clients to be “extremely rude and racist” but was told by that client’s case coordinator that the program’s person-centered approach dictated that “difficult clients” needed to be offered grace and understanding and that care still needed to be provided despite the environment feeling hostile to this worker.

Another client’s house was deemed a “hoarding situation” by some of their care workers, several of whom said they did not feel safe in the house because of the clutter. Other workers, however, argued that while the environment was not pleasant to work in, it did not prove a safety hazard, and they believed that a true person-centered approach to care would not judge the client for these lifestyle choices.

Overall, HCWs were left more or less on their own to decide how to navigate these situations. Some workers applied person-centered language to their decision-making process as they found creative ways to connect with and understand the unique needs of clients that others deemed difficult. Other workers expressed a desire for stricter limits on what was acceptable or not for clients to request and struggled to balance their own needs and well-being with systemic and scheduling restrictions while providing quality care. It is interesting to note that many clients and family caregivers in this study also routinely referred to HCWs as “girls.” Our research team noted this during the analysis phase and was troubled by this trend. Not only does it seem to further feminize work conducted by HCWs and insinuate these interactions are based more on servitude than mutual respect but also seems to indicate that even those on the “inside” of some of these relationships, who understand first-hand the complexities of these interactions, undermine the valuable skills HCWs bring to the home care.

The COVID-19 pandemic, which was declared part-way through this study, revealed the detrimental impacts that can occur when person-centered values and relational approaches to care are overshadowed by emergency policies. At the start of the pandemic, several home care related policy changes were hurriedly put into place in both provinces. Though these policies were intended to protect clients and workers, data from this study indicate that they were not only contrary to person-centeredness, but made life especially difficult for the most vulnerable workers and clients with multiple-marginalities (e.g., those who were severely disabled and living below the poverty line).

On the surface, some of these policies appear to make sense if the sole priority was to limit the spread of contagion and/or to preserve system costs. However, for many clients, their “non-essential” services that were cut off for months starting in March 2020 (like meal prep, house cleaning, etc.) were a lifeline and lack of access resulted in devastating instrumental and social consequences.

Many of these policies were also confusing for HCWs and ran contrary to their PCC practices. For example, one HCW found face shield policies dangerous (e.g., since they fog up and can hit clients when doing personal care). They also noted that they were frightening for clients and hindered their ability to hear the worker. When they brought this forward to their agency, they were told to “get your job done and get out… no conversation, there’s no nothing.” For this HCW, such policies seemed to profoundly contradict what they had learned in school about the importance of “companionship” especially during a time when many clients seemed desperate for human interactions. They expressed feeling that client needs and their own values and perspectives about what made work meaningful were not considered.

Discussion

This exploration of the theme PCC and associated sub-themes furthers our understanding of how workers interpret the need for “common sense” caring responses to client needs. At times, these responses require judicious, effortful, and skillful rule-bending to overcome institutional or policy-related barriers to flexibility, as well as barriers to developing close relationships and respect (and “fictive kin”-like bonds) between workers and clients. This task flexibility, as well as kin-like bonds, was typically associated with PCC, even if some acknowledged there were also risks or challenges inherent in this.

Interpreting aspects of PCC as “common sense” can be a way for workers to justify going above and beyond task lists for their clients to fortify relationships while simultaneously defining themselves against “uncaring” others, policies, or systems. Yet in some cases and with some clients establishing boundaries and setting limits becomes “yet another issue that the home care worker has to handle, or bear the consequences in the form of demands eating into their personal time or being seen by superiors as unprofessional” (Neysmith, 2012, p. 5, p.5).

Though home care work is often precarious, poorly paid, and demanding both physically and emotionally, many workers remain because they find the work—and the connections they forge with clients—rewarding (Franzosa et al., 2019; Herdman, 2002; Neysmith & Aronson, 1996) and the work meaningful (Nolan, 2004). The concept of “fictive kin” (Baldassar et al., 2017; Lee et al., 2020) can be used to critically examine how workers (primarily immigrants whose close family members are overseas) sometimes form familial-type relationships with the older clients they care for. Due to problematic bio-medical views on aging and disability (that frame lack of “improvement” or increased dependence on others as tragedy) HCWs’ work is often assumed not to be a stimulating or meaningful career choice (Nolan, 2004).

Mechanistic and transactional approaches to home care service provision are antithetical to PCC; indeed, as disability justice advocates and scholars have emphasized, such approaches also do not align with the daily realities of these relationships, which involve affective relations (Fritsch, 2010). Framing care relationships between HCWs and clients as “intimate care assemblages” (Fritsch, 2010, p. 3) instead of traditional employee-employer transactions helps problematize capitalist ideals associated with independent living models and self-sufficiency in home care, that obscure our inter-relatedness and humanity. Nolan et al. (2004) have taken a similar stance while arguing that PCC is misguided, based on problematic bio-medical models and skewed narratives of “heroic” or “successful” aging that equate autonomy with well-being (46). Like many disability activists, Nolan et al. also argue in favor of recognizing the inter-dependence of care work, and taking into account not only a client’s personality and needs but also the values of the workers and others involved in the client’s care. They argue for a culture of mutual respect and interconnectedness.

Findings acknowledge that more work needs to be done “behind the scenes” and to provide training and support for workers and agency staff on navigating flexibility and boundaries within a more nuanced and relational conceptualization of PCC. Whereas most home care/support workers and personal support worker post-secondary training programs stress the importance of PCC as a key component of curriculum, workers are often unprepared for the ways in which their own lives may become intertwined with those of their clients. Nor are they prepared for complex situations that arise in practice that require them to rely on their own values and beliefs when determining if and how to “bend” rules to better meet their clients’ needs. It thus seems vital that future training for HCWs takes a relational approach and considers not only the needs and well-being of clients but of workers—taking into account their constrained service context and workload. Specifically, learning objectives for post-secondary courses that train HCWs would do well not only to focus on cognitive learning outcomes (where students would be expected to “define” and “describe” terms like “PCC”) but also to consider the affective learning domain (i.e., students would be given time and space to discuss their own values and beliefs—when and why might they find it necessary to bend rules in the name of improved client care? What are their personal boundaries and limits when it comes to attending to “demanding” clients? How much responsibility are they willing to shoulder themselves before approaching supervisors to request guidance or advocate for system change?). How might they apply practical wisdom when deciding whether to bend rules to meet client needs (as many felt the impulse to do during the COVID-19 pandemic when policies and practices being imposed seemed to contradict what they had been taught about PCC)?

Strengths and Limitations

A unique aspect of our study was the collection of rich data from multiple interviewees within multiple care constellations. Following participants and analyzing dynamics within care constellations over a two-year period, including the COVID-19 pandemic, allows us to offer insights into how changing circumstances (such as physical or mental health; family caregiver availability; and policy-level changes in home care delivery) may affect PCC and HCW-client relationships.

Our study also has limitations. The theoretical framework did not drive the methods utilized. For example, intersectional feminism supports our analytical approach to assess the importance of the contexts in which clients and HCWs find themselves, but we are restricted by the study not collecting demographic data from HCW participants, nor asking more targeted questions about power dynamics at play in PCC. Additionally, the study only focused on publicly funded home care in two Canadian provinces—potentially limiting the transferability of the results to other jurisdictional and privately arranged contexts.

Conclusion

While the impetus behind PCC—to provide holistic and collaborative instead of hierarchical care, where decisions account for client’s needs and desires—is to be celebrated, issues arise when this is implemented in home care practice. There needs to be a deeper understanding amongst policy makers, and those training HCWs, of the real complexity of worker-client relationships in home care settings.

Much attention has been paid to home care in recent years. Typically, these narratives focus on our aging population, and older adults’ desire to age in place and remain “independent” as long as possible. Viewed through an intersectional feminist and critical disability lens, home care programs exist precisely because many individuals are not able to remain fully independent; most of us become temporarily or permanently disabled as we age and require help from others to survive. Idealization of “autonomy” further obscures the important (and precarious) work done by highly skilled individuals (mostly women, many of whom are racialized and precariously employed) to meet the needs of these clients.

ORCID iDs

Grace Warner https://orcid.org/0000-0001-9865-865X

Janice Keefe https://orcid.org/0000-0003-3073-8535