Home Care Workers’ Experiences of Client Death and Disenfranchised Grief

Abstract

While many types of health care workers experience patient death, home care workers do so under vastly different social and economic circumstances. When a client dies, home care workers often lose both a close relationship and a job. Though research suggests that health care workers’ grief may frequently be disenfranchised, there is no in-depth study of the mechanisms that disenfranchise home care workers’ grief specifically. To address this gap, our study used focus groups and peer interviews between home care workers in New York City. We describe four interrelated grief strategies they employ to navigate social and employer-based “grieving rules.” Our findings suggest that home care workers’ grief is disenfranchised via employer and societal underestimations of their relationships with clients and their losses when clients die, particularly job loss. Building on our findings, we suggest alterations to agency practices and home care systems to improve support for workers.

Keywords

home care workers client death disenfranchised grief job loss support qualitative focus groups peer interviews New York

Personal care attendants and home health aides (collectively referred to as “home care workers” or “aides” in this article) provide the majority of home care services, helping elderly and disabled clients to eat, bathe, and dress, among other functions. They comprise a rapidly growing sector of the U.S. health care workforce (Bureau of Labor Statistics, 2018). Between 2005 and 2015, the number of U.S. home care workers more than doubled to 1.4 million, and is currently estimated to be 2.2 million, including the estimated 800,000 independent providers who are not captured by federal Bureau of Labor Statistics data (PHI, 2017). U.S. home care workers are mostly women of color, often immigrants, who face significant economic disadvantage. Their median annual income, which is influenced by low wages and inconsistent hours, was US$13,800 in 2016, reflecting a 23% poverty rate (PHI, 2017).

Because of the “one-on-one” home-based nature of this work (Stacey, 2011), home care workers are isolated from their peers and supervisors (National Institute for Occupational Safety and Health [NIOSH], 2010). This, in addition to intimate aspects of the work, produce emotional job demands that are unique and complex, including the stress of performing emotional labor (Ayalon, 2012; Delp, Wallace, Geiger-Brown, & Muntaner, 2010; Geiger-Brown, Muntaner, McPhaul, Lipscomb, & Trinkoff, 2007).

This article focuses on a largely unaddressed stressor: the death of clients. The limited literature on this topic suggests that aides can experience instrumental and emotional effects after a client dies. Instrumentally, a client’s death often results in—at least temporarily—the loss of work, take-home pay, and eligibility for health care and other benefits (Delp & Muntaner, 2010). Emotionally, home care workers report particular stresses associated with caring for a client who is close to death (Devlin & McIlfatrick, 2010), especially when the aide–client relationship is a close one (Denham, Meyer, Rathbun, Toborg, & Thornton, 2006).

To our knowledge, only one major study has examined home care workers’ grief after client death. This study surveyed both home care workers (n = 80) and certified nursing assistants (n = 140) and found that they experienced grief symptoms similar to those of family caregivers (Boerner, Burack, Jopp, & Mock, 2015). The authors also learned that agency policies rarely allow aides to stay in contact with clients’ families after a death and that few aides felt they could seek support from their supervisors (Boerner, Gleason, & Barooah, 2016; van Riesenbeck, Boerner, Barooah, & Burack, 2015). The grief and lack of support following a client’s death are thus critical problems that likely reduce job satisfaction, increase burnout and turnover, and compromise home care workers’ health and the care they provide (Boerner, Gleason, & Jopp, 2017).

While little is known about aides’ experiences after client death, there is more literature about hospice and palliative care nurses. These nurses experience significant and complex emotions (including sadness, guilt, anger, and frustration), and stress associated with patient death, but they also derive certain kinds of satisfaction and personal growth from their active engagement with the end of life (Funk, Peters, & Roger, 2017; Harris, 2013; Ingebretsen & Sagbakken, 2016; Kehoe, 2006). These experiences likely stem in part from the extensive emotional and informational support they provide to patients and families of the dying (Hirano et al., 2011; LaValley, 2018). To cope, these nurses rely on social support (mostly from coworkers), humor, and spiritual beliefs and practices (Harris, 2013), as well as various forms of distancing and shielding (Ingebretsen & Sagbakken, 2016; Sandgren, Thulesius, Fridlund, & Petersson, 2006). Nurses who care for the dying struggle with the tension between what they see as their complicated professional role (which requires being “humanly present” while also suppressing emotion) and their personal role (which can lead them to build relationships with patients and thus experience loss and grief at their passing) (Broom et al., 2015; Bruce & Boston, 2008; Funk et al., 2017; Ingebretsen & Sagbakken, 2016, p. 11; Kehoe, 2006).

Theoretical Orientations: Grief and Disenfranchised Grief

Much has been written on general patterns of grief. Though Elisabeth Kübler-Ross’s five stages of grief—denial, anger, bargaining, depression, and acceptance—still dominate most teaching and training, many aspects of her theory have been challenged, particularly the notion of progressive stages that end in acceptance (Bonanno & Boerner, 2007; Silver & Wortman, 2007; Stroebe, Stroebe, Schut, & Boerner, 2017). Most grief researchers and therapists indicate that the majority of grievers have adequate internal resources and social support to readjust to life after a loved one’s death without needing significant intervention (Zisook & Shear, 2009). However, there are factors that can complicate grief in a minority of individuals and lead to poorer outcomes. Studies suggest that caregivers who are caring under both difficult and rewarding circumstances are at greater risk for complicated grief (Schulz, Boerner, Shear, Zhang, & Gitlin, 2006).

While these general patterns serve as an important backdrop, the concept of disenfranchised grief, first advanced by Doka in 1989 and refined since (2002), carries particular relevance to home care workers. Health care workers’ grief—especially nurses’ grief—is often described as “disenfranchised” (Anderson & Gaugler, 2006; Moss & Moss, 2002) or grief “that is not openly acknowledged, socially validated, or publicly observed” (Doka, 2002, p. 5). Critical to Doka’s formulation is the notion that social context strongly shapes who is allowed to grieve, under what circumstances is the individual allowed to grieve, how the individual grieves, and what types of support the individual receives. He writes, “Disenfranchisement can occur when a society inhibits grief by establishing ‘grieving norms’ that deny grief to persons deemed to have insignificant losses, insignificant relationships, or an insignificant capacity to grieve” (Doka, 2002, p. xiii). For home care workers, these “insignificant losses” include job loss after client death. Furthermore, aide–client relationships may be considered as “insignificant relationships” in comparison to relationships between family members and deceased clients.

In this article, we explore how home care workers navigate the “feeling rules” (Hochschild, 2003) and the tacit “grieving rules” (Doka, 2002) implemented by their employer agencies and society at large. We also discuss how aides’ “insignificant relationships” with clients and “insignificant losses” after client death may deny them forms of support typically accorded to grievers. As we are studying a workforce that has not been examined through this lens before, it is appropriate to use qualitative research methods, including inductive and narrative approaches, to explore the mechanisms that disenfranchise home care workers’ grief.

Method

Setting and Background

We partnered with the 1199 Service Employees International Union’s (1199SEIU) Home Care Industry Education Fund (the Fund), a labor-management fund serving home care workers who are union members. The Fund offers semester-long courses and training opportunities to 15,000 to 20,000 home care workers annually, who work for Licensed Home Care Services Agencies in New York City (NYC). Our Fund partners allowed us to recruit participants from their classes. Given their expertise in working with this population, the Fund also provided input on research design but did not participate in data collection or analysis.

The research we report on in this article was preceded by another qualitative study that took place in the same setting and was led by a member of our team. In the study, which examined home care workers’ conceptualizations of quality of care, several participants shared accounts of client death and described the resulting emotional and instrumental effects (Franzosa, Tsui, & Baron, 2017). This current study was thus developed to (a) more systematically investigate home care workers’ experiences of client death and loss, and (b) gather feedback on two possible interventions to help home care workers prepare for and process client loss. This article reports on the first of these objectives.

Participants and Research Procedures

In recruiting participants through Fund classes, we sought to include English-speaking home care workers from a range of racial/ethnic backgrounds with at least 6 months of home care experience. Our sample of 26 participants were all female, ranged in age from 32 to 60 (M = 48), and had worked in home care for 1 to 25 years (M = 10). Ninety-six percent were foreign-born, with the majority of those from the Caribbean and others from Central America and West Africa. It is worth noting that home care workers who attend Fund classes are more experienced than those who do not (to be eligible to enroll in Fund classes, one must work at least 80 hours/month for six of the last 12 months). In addition, our sample does not include the substantial population of NYC’s home care workforce that speaks Russian, Chinese, and/or Spanish, but not English. Because we wanted to compare experiences of client death with other types of client loss (e.g., client moves into a residential hospital setting), we did not limit our sample only to home care workers who had experienced client death.¹

We chose focus groups as our primary data collection method for three reasons. First, focus groups offer an opportunity to compare the experiences and perceptions of home care workers, to note points of agreement and disagreement, and to assess how workers make sense of their own diverse experiences (Krueger & Casey, 2008). Second, focus groups—which have been used extensively to gather perspectives on ideas and materials—fulfill our second objective regarding intervention feedback. Third, our Fund partners believed that focus groups would be a more comfortable format than individual interviews, because the focus groups in the previous study had been well-attended and data-rich. We sought to recruit five to eight home care workers for each of our four focus groups, intentionally aiming for smaller groups that would elicit more detailed, in-depth information. To accurately reflect the diversity inherent in the English-speaking NYC home care workforce, we did not segment groups. We recruited 26 participants from several semester-long courses in December 2016 and conducted the focus groups in January 2017.

We then recruited seven of these participants for peer interviews—the intervention modality preferred in our focus groups—in May 2017 (findings are reported in a separate article, Tsui & Franzosa, 2018). We provided a half-day training and then asked participants to interview one another for 30 to 45 minutes about their experiences with client death. By allowing for an adequate amount of time to share in-depth contextualized stories, these interviews generated rich data, as well as recorded audio clips to be used in the development of a training to help home care workers prepare for and process client loss. At the end of the day, the seven participants completed a debrief focus group reflecting on the experience, which provided additional data.

The activities described here were approved by the institutional review board (IRB) at the CUNY Graduate School of Public Health & Health Policy. Participants provided written consent for each of the data collection engagements and completed a permission form documenting how their peer interviews could be used.

Analytic Strategy

Our analytic strategy includes broad and detailed logics. Broadly, we learned about client death experiences using iterative triangulation through three engagements with home care workers: the care quality focus groups from our initial study (reported separately and not included in this analysis), the client loss focus groups, and the peer interviews and debrief focus group (which we are counting as one engagement).

The detailed analysis follows an approach in which we sought to assiduously attend to the emic and dialogic aspects of our data (Charmaz, 2001; Riessman, 2007), in addition to conducting a thematic analysis. We used debrief sessions with moderators and field notes taken during the first two focus groups to modify the guide for the next two focus groups. All four focus groups were then transcribed and analysis team members made notes on key themes, issues, debates, and questions. From these analytic memos, an initial codebook was developed. Further refinement was then made after the peer interviews and debrief focus group. All data were transcribed and coded in Dedoose. Analysis continued via in-depth writing about core themes and via discussion among team members about key findings and outstanding questions.

Findings

Our findings present a complex picture of home care workers’ experience with client death that is deeply emotional but tightly entwined with livelihood concerns. In the subsequent sections, we describe the following themes: relational factors that shape experiences of client death; outcomes and effects of client death; and core strategies to navigate social and employer-based “grieving rules” (following Doka). Finally, we present forms of support described by aides as most essential in their ability to continuously prepare for and process client death.

Relational Factors Shaping Experiences of Death

At the heart of workers’ client death experiences is the loss of the relationship between an aide and a client. Our focus groups and peer interviews suggest that the nature of this relationship (especially when the client is “good to you” [FG²]) powerfully shapes an aide’s experience of death. A majority of the relationships described in our data appeared to be intimate and socially nourishing, which understandably increased the perception of loss when clients passed away. However, participants acknowledged that not all relationships were positive and that could affect the impact of a client’s death. For instance, one participant whose client was “never pleased” and “calling you all kind of name” described her response to this client’s death as less emotional compared with other clients (FG).

The length of the aide–client relationship also contributes to the impact of client loss. Aides report that with a sufficient passing of time, even a client who was difficult to work with initially may come to be perceived as a loss at the time of death. As one participant said, “Relationships grow by spending time with the person. Spiritually, there is something going on between you, so you feel the pain of the person. You feel the hate of the person. You feel the joy of the person” (FG). And the length of the relationship need not necessarily stretch into years to be considered sufficient to create a sense of loss. As one participant said, “Six months can be long term. It depends on the kind of relationship that you have with your client. [. . .] And if you are an hospice aide that works with a client to give them comfort care to see them go and they’re gone, you’re going to miss the person, too” (FG).

Outcomes of Client Death

Emotional and physical effects

Though each death documented in our data was specific and unique, participants’ emotional experiences were quite cohesive. While various levels of emotion were indicated, there were few, if any, instances of aides experiencing client death without significant negative emotional effects. Words commonly used were “hard,” “sad,” “painful,” “depressed,” and many participants mentioned their tears over a client’s death. A less strongly represented perspective was that there could be a mix of emotions (“It was sad and it was happy too, because she was 99 years old” [FG]). In Table 1, we provide examples of the range of emotional experiences.

Table 1.

Quotes Indicating Range of Emotional Distress Following Client Death.

Less emotional distress	Greater emotional distress
• “We have to try to move on [after a client’s death] but it’s hard.” (PI) • “I missed her a lot.” (PI) • Not being able to accept the client’s death “took a mental toll.” (FG)	• “After she passed away, I was so confused. Everything—I forgot what I got to do, and my life is different now.” (PI) • “Everything just came tumbling down when she died. It affect me in a way that I never realized it would.” (PI) • “It was like a part of me died.” (FG)

Even when a death was seemingly a “good death” (at home, with family present, peaceful), it could still be difficult for the aide and require substantial emotional labor. One participant illustrated this well:

Leaving that home that day, oh my God, it was heartbreaking. I turned and when I say goodbye to the family members, I couldn’t look at them. I couldn’t look at them because the tears were just—the tears were flowing. [. . .] I couldn’t control it. [. . .] I left that compound in tears and for days—for months. Even now, I still remember her. (PI)

These immediate emotional responses led, in turn, to a range of physical and emotional outcomes. Most proximally linked were certain physical and social effects, such as increased blood pressure, sleeplessness, and lack of desire to socialize. As one participant described to wide agreement, “I couldn’t sleep, my blood pressure start to go up because I had stress, because of lack of sleep, and just too much on my mind at once” (FG).

Longer term effects experienced by aides could also be related directly to the death event itself. A few participants blamed themselves for their role in their client’s death. One discussed feeling guilty and anxious and alluded to how this event hindered her ability to return to work, noting, “I’m feeling so guilty, so bad, oh my God . . . I didn’t want to come back to work. I don’t know if I do the right thing or the wrong” (FG). Client death could also prompt anxieties about other clients passing away. The aforementioned participant concluded her story by saying, “I didn’t work like for like six months . . . because I feel like if I’m going to another case, that’s going to happen again.”

Financial effects

Importantly, for many aides, the loss of a client induced concerns about the timing and type (temporary versus permanent) of their next assignment. As a direct extension, many feared not having enough client hours to pay their bills and maintain their health insurance. One participant lamented,

When a client die, do not tell yourself that you’re going to get a job the next day or the next week . . . You lost insurance because if you’re not working your insurance is cut . . . And sometimes when a client die, you might have to go and sign up with another agency because the agency that you’re with, they don’t have a permanent job to put you in. You get frustrated because they might send you to this job today for two hours and then another job for another two hours or another four, but you’re taking it because, you know, you have bills to pay. (PI)

Aides also described an inherent tension in balancing financial security and emotional health. Several talked about needing to take time off after a client death, even if they could not afford it. “I know you have bills to pay,” explained one participant, “But sometimes for your health, you have to take like a break sometimes to really help yourself to really cope with passing of a client” (PI). The time frame of their breaks varied from days to months, either because aides were still grieving or feared their next client would also die. As one participant who took 8 months off explained,

When she die, it was so . . . emotional . . . it did take a toll on me. I couldn’t go back to work. It [was] not that I couldn’t get a job; I just couldn’t go back to work.” (PI)

Positive effects

As has been documented among nurses, for many aides, the death of a client could also confer significant life lessons and a sense of meaning and satisfaction with their role in the dying process. Uniquely though, some aides expressed how positive letters or phone calls from a deceased client’s family following a death could provide important forms of recognition at their agencies. One participant described how a client’s sister advocated for her: “The sister, she’ll always tell me, [. . .] I’m so thankful for what you did for my sister. [. . .] She did call my supervisor³ and told her, you know, give me the best job she has” (FG).

Core Grief Strategies and Their Limits

Aides appeared to navigate client death using four core interrelated strategies: relying on personal strength, considering boundary-setting, requesting (but expecting few) agency supports, and seeking emotional connection. Some of these strategies dovetail logically, such as expecting few agency supports and relying on personal strength, whereas others can be in conflict, like considering boundary-setting and seeking emotional connection. Not all participants used all strategies, though many described using all or most. All strategies pivot around aides’ keen awareness of subtle agency-driven grieving rules indicating how they should feel and behave.

Relying on personal strength

Aides constructed a compelling picture of their self-sufficiency and professionalism when coping with client death. They felt a professional responsibility to be strong yet compassionate for both their clients and the clients’ families throughout the dying process. “This is what we are trained for,” one participant said.

Not that we’re not human being[s]. We’re gonna feel that way because you are with the client for a very long time. But at the same time, we have to be strong for the client because . . . as their health care worker, we cannot allow their family member or the patient to see that we are falling apart. (PI)

Aides also described relying on their own personal strength to “move on.” One participant highlighted the financial pressures entwined with this narrative of strength: “You have to have strength . . . inner strength. Because I know that life has to go on and we have bills to take care of” (PI). “Nothing really leave you but you make a choice,” said another participant. “So I make sure I work, I work, I work” (FG). In fact, work was a common distraction technique that allowed aides to demonstrate strength by dedicating themselves to caring for a new client.

These intentional steps to manage coping on their own did not always work, however. One participant made the decision to take on a new client immediately (likely due to financial need), but in retrospect, felt that staying on the job isolated her in her grief: “I started working right away, trying to, you know, not focus on it. And it was too soon; I wish someone was there to talk to” (FG). Aides also acknowledged that they didn’t always have the practical tools or resources needed to follow their own professional advice. One participant, after speaking eloquently about the importance of preparing for client death and being “strong,” concluded that, “It’s difficult to prepare yourself . . . but, as I say, you have to do it. But how? That’s a question I’m asking myself and I don’t think I can come up with the answer” (PI).

Considering boundary-setting

After experiencing a client death, aides would often try to protect themselves by setting, or attempting to set, emotional boundaries with new patients and their families, as agency policy dictated. One participant described a philosophy that she and other aides tried to adopt:

You have to defend yourself, you have to not let yourself get too close to that patient because they [the agency staff] tell you not to. And if you don’t want to hurt yourself in that way, try to find ways not to get very close to them because you never know what might happen . . . it’s better for me . . . to not get so close but to treat them the way that they’re supposed to be treated. (FG)

However, this approach was incongruous with aides’ philosophy on patient care, which relied on developing compassionate and intimate relationships with their clients. “The agency, the first thing they tell us, ‘They’re not your family. They are your patient,’” said one participant, at the same time noting, “but we are human beings. We have a heart” (FG). In one focus group, participants were skeptical of aides they knew who avoided close relationships with their clients and who “move on real quickly” after their clients die.

Expecting few agency supports, though sometimes requesting them

Aides strongly articulated that their employer agencies do not provide meaningful support related to the emotional impact of a client’s death or to the resulting job loss. One participant noted that, “The supervisors are not there to really—when the patient dies—to really call you up and see how you’re doing. So my advice to [other aides] is to find other ways of coping” (PI).

Compounding aides’ grief at times was failure on the part of agencies to recognize aides’ relationships with their client and acknowledge their multifaceted losses after a client’s death. This is illustrated by one participant’s attempts to ask her coordinator for help. Instead of offering sympathy, she felt the coordinator blamed her for getting too close to her client:

I worked with [a little girl] for eight years and she passed away. [. . .] I did tell the job, the supervisor, that that case was a hard case and could I get some time off? And they said, “Well, you’re not supposed to have a relationship with your patient.” I didn’t say anything to them, because they said, “It’s a job. You can’t come in and think it’s a relationship.” (FG)

Many aides also lamented the absence of adequate training on how to prepare for client death and navigate its emotional effects. Of the few who reported receiving training, one participant described being grateful that her supervisor sent her to a hospice class after her first client died: “That’s helped a lot to me” (FG). Another participant who had trained as a certified nursing assistant felt the course had helped her understand the five stages of grief, and “when you have come to terms and you’re ready to move on” (PI). However, other aides expressed that this kind of minimal training was “not enough.”

In a few cases, aides received some support from their agency, though these instances were rare and often dependent upon aides’ relationship and standing with their supervisor. Though agency policies sometimes limited aides’ contact with clients’ families after a death, one participant talked about a circumstance in which workers might be able to attend a client’s funeral (though several noted this would not be considered paid time):

You have to be with the client for a long time. And the client is talking about you, you know, how much you help and how much you do this, so understand that there’s a kind of relationship between you and the client. Then they [the agency] would say, “Would you like to go to the funeral?” (PI)

Sympathetic coordinators could also help aides to process a client’s death. In one case, a coordinator assuaged an aide’s guilt about calling an ambulance for a dying client who did not want to go to the hospital. However, the aide was still so affected by the experience that she took several months off work to recover. Other aides felt that coordinators were sometimes helpful in assigning them to new cases quickly after a death but noted again that it was dependent upon their relationship and standing with the coordinator. For instance, aides had to establish themselves as “good workers” to receive this treatment. In these cases, when “they get a client in . . . the coordinators are going to be looking out for you” (FG). However, some participants who were not ready to go back to work felt it was “insulting” when a coordinator called with a new case without acknowledging the previous client’s death (FG).

Seeking emotional connection

Because home care work can be isolating, aides also turned to family, friends, health professionals, and others to process their experience with client death. One participant described how important it was to ask for support from a range of sources and that you need

support from your family. Support from members of your church that you go to. Support from other aides that you are very close with . . . because you definitely need somebody to talk to, someone who you can confide in. You know? And they will help. You can’t do this alone. (PI)

Beyond emotional connection, one participant recalled having to rely on her family financially for an extended period of time after losing a client.

Isolation compounded by an absence of emotional connection (whether sought after or not) is difficult. As one participant said, “If somebody dies in [your] family, you have all the family members. You cry together, you know. That family support is there . . . but when a client dies, it’s you. It’s you alone” (FG). Aides who did not have close family to rely on could strongly feel the absence of that support. “It was difficult for me, because I didn’t have no support to help me through that and at that time I live alone, I’m not married or anything before and it was very hard on me” (FG). In addition, clients’ and aides’ own family members sometimes did not recognize the emotional bond aides felt with their clients. “[My husband] didn’t understand,” said one aide. “He was saying things like, it’s just a client. She die. So what?” (PI).

Supporting Home Care Workers After a Client Death

Though helpful, the four strategies described above left large gaps in home care workers’ ability to effectively cope with client death. In this section, we describe participants’ suggestions for helping to address these gaps. Recognizing the complex experience of home care labor, these suggestions include both emotional and financial supports that could improve aides’ ability to successfully navigate client death (see Table 2).

Table 2.

Emotional and Financial Support Requested by Home Care Workers.

Emotional	Financial
• Call/Check in from coordinator • Time off/Time on • Counseling/Mental health benefits • Contact with client’s family/Closure • Training	• Paid time off (both bereavement leave and to attend counseling) • Consistent scheduling; placement on a new permanent or temporary case

One of the main recommendations that participants provided for coordinators was to acknowledge client loss and the disruption it can create for an aide. Some suggested a phone call or check-in from a coordinator, while one participant proposed the idea of assigning a point person at the agency who could guide aides through the transition. “The person would ask you, is there anything I can do? And they [. . .] tell you exactly what they could do to help you” and “reassure you that even though the client dies, you’ll get a job” (PI).

Consistent scheduling after a client loss was aides’ primary financial concern. Participants did acknowledge that coordinators often tried to find them new cases when clients passed away, because they “know it is not you. It is the patient that passed. It is easy for them to relocate you and give you another case” (FG). However, some aides were not quickly reassigned or were only assigned to “floating” or temporary cases, which could be an added source of stress.

Aides also desired the option of paid time off, to allow them to process difficult deaths without the added worry of financial instability. As one participant noted, “[Giving] you two days or three days with pay” would help mitigate the “emotional impact” (PI). However, some thought the likelihood of their agencies supporting such a policy was slim, with one participant bluntly noting, “[the agency] doesn’t want to pay for it [bereavement time]” (FG).

Regarding emotional concerns, aides expressed a strong desire for their agencies to provide counseling or referrals to mental health services, either in-person or over the phone. One participant discussed how this would be beneficial, especially for those who lack social support:

You could vent it, talk about it, they could give you, here is where you could find some form of relief . . . And that would be good for people who don’t have like a lot of interaction with other people. (PI)

Aides also requested that agencies provide more practical training opportunities on how to prepare for client death and navigate its emotional effects. One participant commented, “They need to teach us like how to prepare for the dying. [. . .] You don’t really expect what you really gonna care about for that person” (FG). Notably, aides made it clear that these supports would only be useful if they did not result in a loss of income or create scheduling problems with a coordinator.

In closing, we should note a core underlying tension among participants’ responses: whether they wanted or needed to take on a new client shortly after a client’s death because of emotional and/or financial reasons. Some aides wanted to return to work immediately whereas others could not or did not want to. However, we found that those who financially needed—but emotionally could not or did not want—to return to work immediately appear to have the greatest need for additional supports.

Discussion and Implications

In this article, we confirm and build upon the existing research demonstrating that client death can have negative effects on the lives of home care workers (Boerner et al., 2015; Boerner et al., 2017; Delp et al., 2010) and that several types of support are needed to reduce these effects (Boerner et al., 2016; Gleason, Boerner, & Barooah, 2016). In examining aides’ grief strategies, we found some that were similar to those of nurses working with end-of-life clients (e.g., seeking emotional connection and attempting to set boundaries) and others that were largely distinct—specifically, the general lack of employer support in the postloss period and the need to rely primarily on one’s own personal strength to cope with grief. Furthermore, our findings suggest that home care workers’ grief is doubly disenfranchised: When clients die, aides are wrongly perceived as having both insufficient losses and insufficient relationships to justify their grief and merit support. We outline our findings below.

The job loss resulting from a client’s death is an important and unique circumstance of home care workers’ postloss experience. As noted in our introduction, poverty and financial precarity are common among many home care workers, and periodic losses of pay (and perhaps health coverage) following a client’s death contribute to this precarity. Our data also suggest that emotional effects can amplify the financial effects of a client death, making aides’ experience of grief more dynamic and intricate than others may easily see or understand. Though the interrelated financial and emotional losses may appear “insignificant” (per Doka) in the eyes of coordinators, family members, and society, when considered through the lens of home care workers’ experience, their significance is deeply apparent.

The disenfranchisement that stems from the aide–client relationship being perceived as “insignificant” has been demonstrated among other types of heath care workers, particularly nurses (Anderson & Gaugler, 2006; Funk et al., 2017; Moss & Moss, 2002; Wilson & Kirshbaum, 2011). Institution-based nurses cite great pressure to suppress grief, but they can also draw upon humor and others forms of social support with coworkers (Funk et al., 2017; Harris, 2013). These nurses may benefit from clearly defined roles, and formal and informal opportunities for socially endorsed mourning, such as hospital-based memorial services, conversations with other workers, and employee assistance programs, though they also frequently cite a desire for stronger supervision and organizational support (Bruce & Boston, 2008; Ingebretsen & Sagbakken, 2016; Renzenbrink, 2003). Indeed, recent autoethnographic research on legal assisted death in Canada speaks of the sadness and distress that health care workers sometimes experience after these events (Beuthin, 2018). If such outcomes are possible in planned deaths involving a supportive health care team, then it is not surprising that these might be amplified for isolated home care workers who receive limited training and support.

Provider-patient relationships may go largely unrecognized for many types of health care workers, but our findings suggest that for aides, this lack of recognition is particularly difficult because of the intimate, one-on-one nature of aide–client relationships. As our data show, agencies and coordinators actively discourage these relationships, and aides have little contact with other members of a client’s care team. Even when workers do have contact with care team members, the literature suggests that these interactions are likely to underestimate home care worker–client relationships, as in a U.K. study of community nurses working with home care workers, who viewed aides’ job as primarily providing physical care (Devlin & McIlfatrick, 2010). Clients’ family members and aides’ own family sometimes recognized these relationships, though often did not.

Unlike institution-based workers, home care workers may only occasionally have an opportunity to participate in socially endorsed mourning, particularly funeral ceremonies. There are structural reasons for this—like agency policies (Boerner et al., 2016) and the coordinator-led process of facilitating funeral attendance—but also logistical reasons, because home care workers may no longer be in touch with a client’s family members when a funeral is planned or may be invited but unavailable to attend due to new job responsibilities.

In our analysis, we found that some home care workers sought to enfranchise their grief by cultivating supportive relationships (with their own or with client’s family members, with their friends, or with their coworkers who took classes through the Fund) in which they could talk about home care work and losses and in which their relationship with the deceased client was recognized. However, as often as not, home care workers in our study seemed unable to find or cultivate such relationships and therefore, kept quiet about their experiences, attempting to move on through distraction and other techniques. When home care workers did ask for supports that would allow them to grieve a client’s death in ways that felt necessary and appropriate, these supports were typically denied. Thus, the responsibility of enfranchising grief fell solely on individual home care workers who struggled to cope with the emotional effects of client death while trying to make the most optimal financial decisions possible.

In reviewing our findings, we were struck by the important role that coordinators play in the lives of home care workers—a role that, if appropriately empowered, might help to address the interrelated financial and emotional effects of client death. Coordinators functioned as a source from which home care workers sought (a) emotional support in terms of the recognition of their loss(es), and (b) financial support in the form of paid time off and/or swift placement on a new case. Due to the many ways in which home care workers are socially disenfranchised, their cultivation of relationships with coordinators is a complex process and appears to depend upon their ability to present themselves as “good workers.” Previous research has detailed the difficulty that some aides have in reaching their coordinators by phone, which may preclude communication and relationship building (Franzosa et al., 2017).

In a scenario, however, in which coordinators are trained to understand the financial and emotional effects of client death, and are empowered or incentivized to assist, they might provide basic emotional support by phone, where they can acknowledge the importance of the aide–client relationship and help to enfranchise aides’ grief. (The meaning of this small gesture in addressing home care worker grief has been recognized previously; Gleason et al., 2016). More ambitiously, coordinators might be empowered to use what they learn about home care workers’ experiences and needs to develop a postloss plan that offers basic informational, financial (paid time off and/or swift assignment to a new case), and emotional (referral to counseling or other services) support.⁴ This approach would help to address broader forms of social disenfranchisement.

There are at least two important barriers to such an approach that would need to be addressed. First, this approach requires ample funding, training, and support for coordinators to perform these added functions. Such resources are scarce in the current U.S. health care funding and policy environment, and middle managers like agency coordinators are already being asked to do more with fewer resources and supports for themselves (Nisbet, 2017). Aides and coordinators thus suffer from mounting stressors due to diminished resources and increasing administrative complexity as a result of managed care (Franzosa et al., 2017; Nisbet, 2017; Nisbet & Morgan, 2017). Second, in this environment of financial strain and the growth of for-profit agencies, a lack of response to aides’ needs may not always be an oversight. For example, the feeling and grieving rules established by agencies may intentionally reduce the ability of home care workers to demand grief-related support. In addition, agencies may benefit financially by prioritizing their own need for labor market flexibility to meet consumer demand over aides’ needs for support and postloss flexibility. Such practices are part of a much larger and historic trend toward labor flexibilization in the United States and elsewhere (Harvey, 1991, 2007).

Limitations

This study has some limitations. Though we believe the iterative approach to triangulation that we used has lent credibility to this small pilot study’s findings, there are multiple forms of diversity within this workforce locally and nationally that we were not able to examine in our sample. A more comprehensive study might seek saturation across a range of racial/ethnic/language groups, as well as different home care specialties (e.g., workers and/or agencies who specialize in hospice care vs. not) and state-level models for structuring and financing home care. In addition, our sample of home care workers are unique in that all are union members and thus have greater supports and better benefits than the much larger population of nonunionized home care workers (and yet, still struggle with the complex stresses of client death; PHI, 2017).⁵ Finally, as this was exploratory qualitative research, we were unable to meaningfully describe the frequency with which home care workers experience client death across the forms of diversity mentioned above. These data would provide an important foundation for future interventions, programs, and policy changes that might improve support for home care workers.

Conclusion

This study contributes an in-depth picture of the experience of client death for home care workers in NYC and the ways in which their grief is disenfranchised. Drawing on workers’ voices and perspectives, we suggest alterations to agency practices and home care systems to improve support for workers. We argue that aides’ grief is disenfranchised via incorrect employer and societal perceptions of the significance of their relationships with clients and their losses when clients die. Improved support systems are essential to the health of workers and the well-being of their clients, as the American older adult population continues its disproportionate growth and the home care workforce grows alongside it.

Footnotes

Acknowledgements

The authors thank the 26 home health aides who generously shared their expertise and experiences for this study. They are also grateful to Faith Wiggins, Frances Sadler, Lourdes Rivera, and Rachael Samuel at the 1199SEIU Home Care Industry Education Fund for their support and for making this research possible, as well as to Andrew Viñales who helped to lead the peer interviewing workshop, and to Kathrin Boerner and CUNY’s Faculty Fellowship Publication Program for valuable feedback on this article.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the CUNY Graduate School of Public Health & Health Policy Dean’s Mentoring Grant.

Notes

Author Biographies

Emma K. Tsui, is an assistant professor in the Department of Community Health at Social Sciences at the City University of New York (CUNY) Graduate School of Public Health and Health Policy. Dr. Tsui conducts qualitative and ethnographic research that illuminates the interplay of social forces shaping the health and well-being of low-income workers.

Emily Franzosa, is a public health researcher focusing on job quality and the health of low-wage workers. She received her DrPH from the CUNY Graduate School of Public Health and Health Policy/CUNY Graduate Center, where her work explored how the structure of home care jobs affects worker well-being and care quality.

Kristen A. Cribbs, is a public health practitioner with expertise in aging and health. She has worked across sectors on policy, programmatic, and research initiatives to improve older adult health and is currently a doctor of public health candidate at the CUNY Graduate School of Public Health and Health Policy.

Sherry Baron, is a professor of Occupational and Environmental Health at the Barry Commoner Center for Health and the Environment and Queens College and at the Graduate School of Public Health and Health Policy, CUNY. Dr. Baron studies the health and safety of low-income and immigrant workers and has focused on developing intervention programs for home care workers.

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