Occupational Stress Among Home Healthcare Workers: Integrating Worker and Agency-Level Factors

Background/Context

The current healthcare delivery system in the United States relies heavily on the friends and family of the person in failing health to provide most basic care needs and wants. However, collective concern about unmet caregiving needs has spawned community-based organizations that attempt to improve the job quality of care workers of the elderly and infirm. ¹⁶ They provide advocacy and informational clearinghouse functions for both the long-term care workers and other advocates. These organizations, and others like them, educate members and advance political platforms to address the unique concerns of home health aides.

Between 1938 and 1974, all domestic service work was excluded from regulation under the Fair Labor Standards Act (FLSA). ¹⁷ In 1974, the FLSA was amended to include domestic service and provides that employees be compensated for overtime, but paid care work in private homes, paid for by third parties, or done by untrained personnel was exempt from the law under the “Companionship Exemption” and other exemptions outlined in Section 552. As the long-term care industry has expanded rapidly, healthcare employees have increasingly challenged the government to fully acknowledge care work is being done in private homes as legitimate work under the FLSA and not be subject to the “companionship exemption.” ¹⁸ On 17 September 2013, the U.S. Department of Labor extended FLSA protections—including minimum wage and overtime pay—to home care workers nationwide, effective 1 January 2015. Despite these clarifications, an atmosphere of low regulation and noncompliance persists.^19,20

Occupational Stressors

Psychosocial stressors taking place at work are a threat to good health and contribute to the risk of chronic disease. ³³ Conditions such as hypertension, cardiovascular disease, disordered sleep, musculoskeletal injury, anxiety, and depression have been implicated as the evidence mounts.^34–39 Implementing the redesign of work environments and making changes in organizational culture can ameliorate the threat to health that occupational stressors pose.

Most researchers who study occupational stress characterize job strain as a condition in which high demands are placed on the worker in combination with low control over how the job is done, which is additionally moderated by low workplace support.^35,36 In this model, workplace support is defined as the provision of not only socioemotional support but also the information and materials/tools needed to accomplish the work. In another prominent model, job strain is believed to be the result of an imbalance between high effort and low reward.^37–39 Changing economic or institutional conditions is an important source of stress, but connections between elements of the dominant stress models and these structural factors are not well established. However, some models take into account social contexts leading both directly and indirectly to occupational health inequities trace explanatory mechanisms for work-related stressors.^40–43 More recently, Landsbergis et al.^44,45 and Schnall, Dobson and Landsbergis et al. characterize job stress as a component of occupational health disparities in the population.^44,45 Taking into account the new economy (less manufacturing, more service jobs, and more precarity), stress at work is posited as a significant factor in the overall conception of occupational health. These models are applicable since mental and physical health of paid caregivers is impacted by not only conditions resulting from exposures at work but also those social institutions involved in their employment.

The Conceptual Model

This study takes these prominent occupational stress models into account, but defines them in terms of the stress process models,^46,47 the goal being to demonstrate social pathways that connect agency structures to occupational health outcomes in a way that recognizes not only the environs in which stressors arise but also the moderators and mediators of those strains. Ultimately, this qualitative work aims to demonstrate the relationships between work-related stressors and agency-level factors to better articulate stress development over time.^46–48 The conceptual model suggests an expansive view of potential factors related to home care workers’ health (Figure 1). OPEN IN VIEWER

Qualitative Inquiry at Certified Home Healthcare Agencies in Upstate New York

The sampling frame started with all certified home healthcare agencies registered with the New York State (NYS) Department of Health. Nine home healthcare agencies were selected through connection with the NYS Home Care Alliance, an organization that advances home care agency interests statewide. Selection criteria took into account the following factors: geographic coverage of NYS, city or town size, size of agency (measured by the number of home health aides on staff), and relevant organizational structures. Protocols required fifty hours of participant observation at certified home healthcare agencies (n = 9), key informant interviews with agency executives (n = 20), and in-depth interviews with home healthcare workers (n = 25).

Each agency granted several hours of access for participant observation. Participant observation permitted blending with office routines and “shadowing” leading executives. In this way, access was gained to the full range of the day's business, offering a quick window on the agency's functioning and current problems as they arose. In-depth, semistructured interviews were conducted with at least two senior agency executives at each agency. At two agencies, a third agency executive was interviewed. Three home health aides at each agency participated in interviews. At two agencies, only two were interviewed due to scheduling and workers’ availability. Each interviewee provided informed consent. Interviews took place in a confidential, undisturbed office setting, ranging from forty-five minutes to three hours with most lasting an hour and a half. Face-to-face interactions were recorded, transcribed, and stored securely. All persons interviewed received a gift card for $25 in appreciation for the time invested.

Interview instruments were informed by leading stress models.^13,14,46,47 Questions relating to work demand, autonomy on the job, workplace support, and efforts versus reward were augmented by discussions of how stressful work conditions develop over time within the context of the social structure of the agency. Focused coding techniques were used to analyze field notes and transcriptions for themes for the development of a detailed analysis for all notes and transcriptions.^49,50 More attention was paid to connections that might improve knowledge about occupational stressors ⁵¹ within the context of home healthcare provision. The qualitative protocols for this study were performed with approval from the Institutional Review Board.

Descriptive Characteristics of Home Health Aides (n = 25)

Only one aide was male, the remaining twenty-four were females. Among the female aides, thirteen were white, five were black, five were Latina, and two were of mixed ethnicity. Five were immigrants from Latin America and Europe, while those remaining were born in the United States. Fourteen were married or partnered, four were divorced, one was separated, and seven indicated only that they were single. Aides were from twenty-seven to seventy-eight years of age, with an average age of 48 (M = 48.36, SD = 12.7589). The median age was forty-nine. Pay ranged from $10.75 to $18.75 with most pay rates falling between $10 and $14 per hour. Experienced aides comprised the majority of this sample. Pseudonyms have replaced real names.

Home Healthcare Workers’ Perspectives

Home healthcare workers’ responses contained rich occupational histories and offered an open-ended opportunity for participants to express how job strain or effort/reward imbalance was developing, especially as they fully characterized the work conditions they were currently experiencing. From observation, workers seemed quite forthcoming about their varied work-related health experiences. They characterized how they build their skills over time, how they interact on the home healthcare team, and how they relate to the agency. Aides also shed light on their deeper contexts, describing their encounters with death and explaining how they build trust in the client/patients.

Several home care workers indicated that they had been injured on the job. Workers also spoke of flat wages and lack of benefits even when they had been working in the same agency for years. Workers identified instances of inadequate training and social isolation as problematic. In addition to an overall experience of racism, workers explained specifics about discrimination they experienced on the job. When workers discussed staying healthy at work, they generally gravitated toward high psychosocial strains involving patient/client's family members, grief from a patient/client's death, financial strain, extensive time in traffic, and transportation or childcare hassles resulting from erratic schedules.

As has been demonstrated in prior research, aides pursue health improvement with the clients over time, by working jointly on health goals, seeking to maximize autonomy and quality of life during an extended illness, permanent disability, or journey unto death. The aide learns the preferences of the patient in order to honor his or her dignity, to allow for expression of their unique personality, and to provide the best comfort possible while care is being delivered. Aides routinely cope with difficult personalities and challenging conditions in the home as they build trust and create bonds with their clients. Findings related to the nature of home healthcare work were consistent with the extant literature which already characterizes this work as physically and emotionally hazardous.^1–4

Home health aides are eager to share about the meaningfulness of their work, and given the strong attention that this theme has had in the literature, it is not surprising to hear workers say they love their work and they do not do it for the money. ²⁴ Similar to descriptions in Clare L. Stacey's “The Caring Self: The Work Experiences of Home Health Aides,” ⁹ these workers describe emotional labor, defined here as the “the management of one's feelings and expressions based on the emotional requirements of a job.” ⁵² Additionally, some seem to feel very highly rewarded by fictive kinship relationships, although this is balanced by realistic limitations to these relationships because those bonds fade, nearly instantly when the patient's life ends.

We get to know them. I know them, their kids, their grandkids, their great grand kids, their pet, their grandkids’ pets, their grandkid's sports. We get to know them on a detail. They say I have changed their lives. One patient, who is by herself, calls me her “we.” She says, “When you are with me, we are a ‘we’ and I am not an ‘I’ anymore. Some people have somebody, but I don't. So when you are here, I feel like I am not alone. There is a ‘we.’” (Jane)

Home Health Aides’ Insights About Agency-Level Factors

Agency Leaders’ Perspectives

Themes from examining the home health aides’ voice and the agency leaders’ perspectives overlapped. Most of the agency leaders had been trained as nurses and then rose through the ranks of home care organizations because their talent for administration became apparent. From this training, they seemed uniquely observant and empathetic toward their staff, even down to the level of the home health aide. They are quite aware of the aides’ daily circumstances on the ground. On the other hand, these leaders identified more readily with their registered nurses than with the home health aides. In some cases, they carried authoritarian and condescending attitudes toward the home health aides, believing that the home health aides have it easy while the nurses do the “real work.” There is also carryover language from former stigmatizing attitudes (i.e., referring to home health aides as “girls”). Agency leaders for this study comprised the agency's top management. In every case, this was the director and her second most powerful manager in the organization. Some additional insight provided by managers of clinical operations or the chief financial officer also informed the study.

Agency leaders tended to have the ability to break down the stressors and also to see them systemically. They understood that workers faced emotional labor from being so close to serious illness and death on a regular basis. They also observed that aides have to cope with difficult patients, harsh workplace hierarchies, and work ethics issues. Some workers lack discipline, while others overwork and “try to do it all.” Agency leaders note difficulties in getting some aides to adopt new technologies. Leaders understood that aides face difficulties with basic hassles like keeping a car on the road and coping with financial strain, the result of erratic work hours assigned week by week.

The biggest stressors I have seen over the last few years are that the young girls coming on board have made some choices. And now they are single moms. They are trying to juggle too many things at once. They are trying to juggle a full time job, they are trying to go to school at night, and they have three or four kids. If they don't have a babysitter in place, it can be very stressful. (Betty)

Agency leaders were not centrally focused upon the experience of racism nor the problems of care burdens outside of work. Stories of discrimination tended to focus on agency policy and practices to avoid it. Agency leaders were more apt than aides to identify patterns of cumulative disadvantage from a variety of sources of stress. Programs reminiscent of social services are often implemented internally at the certified home healthcare agency to help shore up the “social problems” the aide may be facing. This combats the crises that crop up, especially those that keep workers at home rather than on the road to the homes.

We do understand how much the financial component can put people into a tailspin, so we all donate money out of our paychecks for an employee assistance fund. They fill out a form. It's handled properly. Usually it might be a fire or something serious. It's a way of getting people back on their feet. (Rose)

Wide-ranging themes flowed from the semi-structured interviews. Agency leaders were able to summarize that their aides were disadvantaged economically, educationally, and frequently stigmatized by internal staff, client/patients, and the general public. From observation, agency leaders seemed quite forthcoming with stories of racial discrimination and sexual harassment they did not tolerate.

About half of the agency leaders were fully aware and sympathetic about aides’ struggles, but the other half pushed back. They believed that the aides were not rushed in their day, could easily accomplish their work, and were provided with ample tools for doing their job and that they loved their work very much. This idea that they “loved their work” was a source of inspiration for their leader. The leaders felt that aides had autonomy at the client/patient's home, in the driving around between home visits, and in their highly flexible schedules. Managers, they said, provided adequate support in tangible and intangible ways. Multiple efforts had been made, most reported, to create opportunities to show aides appreciation, with dinners, prizes, notices up on bulletin boards.

Most agency leaders did believe that aides were underpaid and underappreciated, but a few did not endorse that the aides were experiencing an effort–reward imbalance because they were gratified and satisfied to be helping people, they “love their jobs,” and they “would do it for free.” Finally, some agency leaders endorsed the idea that the home health aides’ work was highly regulated, so any agency characteristics or differences in management style were not likely to have effect on the aides’ lives. Perhaps most ironically, the agency leaders did not always equate the struggles and hassles aides experience in their working lives with any actions that could be taken. Leaders were resigned that pay structures were forever embedded in reimbursement rates and did not generally envision solutions for increasing pay rates, even though they feared staying competitive with other employers.

These are the stressors starting at the policy level. It may be intended or unintended. The pressure to control costs means that you have to give up control of the aides in this community. The work is off-loaded from the certified home healthcare agency to the licensed agency and they are going to pay aides less in the licensed agency. At the same time, the work may even be de-skilled if they can get away with it. (Jessica)

Policy to “Make the Road” Better for Home Healthcare Workers

FLSA acknowledges that care work is being done in private homes as legitimate work. This work is no longer subject to the “companionship exemption.” ¹⁷ In 2013, the U.S. Department of Labor extended FLSA protections—including minimum wage and overtime pay—to home care workers nationwide, effective 1 January 2015.

When workers highly suited to care work select into the occupation, home healthcare work can be seen as a bright spot in the more dismal world of low-wage work, since workers find so much fulfillment, engagement and meaning in their work. But, injury can be disastrous, especially for immigrants and people of color.^56,57 Furthermore, considering the physically and emotionally exhausting nature of the work, their low pay rates are a persistent barrier.