The Work Caregivers Do

This chapter discusses the type of work caregivers do. Among the medical procedures that caregivers do that are mentioned in the chapter are: intravenous therapies (IVs), total parenteral nutrition (TPN), gastrostomy tubes (G-tubes) and nasogastric tubes (NG-tubes), urinary catheters, external catheters, intermittent catheters, wound care, ostomy, bowel management programs, respiratory procedures, tracheostomy, and positive-pressure ventilators. The chapter discusses caregiver insights and the dilemmas they face in having to provide skilled care. In general, many of the medical procedures are not only difficult to master but also cause trepidation because of the possible complications that can result if the caregiver makes a mistake. Several caregivers who gave IVs said they worried about contaminating the IV site or shooting air in the line. In hospitals, problems with medication administration are a leading cause of death, and so are infections that occur when a wound is not correctly dressed or an IV carefully accessed. Yet family caregivers are asked to do these activities on a routine basis — over a period of months or even years. The worry about complications is well founded, as they can have deleterious consequences. Coupled with issues of anxiety and fear of causing harm to the care recipient are issues of manual dexterity and “getting the feel” of the procedures. Not only do caregivers have to overcome fear, get the feel of procedures, and make sure they are done correctly, but they also have to get past the personal discomfort they may have regarding the intimate nature of the work they are asked to do.

Who Pays?

This chapter talks about the different medical care programs available in the United States. Medicare and Medicaid were both created in 1965 and are administered by the U.S. Department of Health and Human Services. Medicare is a federally funded program, while Medicaid is funded by both the federal and state governments. Unlike Medicare, Medicaid is managed by individual states based on federal guidelines that stipulate the services that must be provided to specific groups of poor individuals. Medicare has historically been a driving force in U.S. health policy due to its conversion of typical fee-for-service medical reimbursements into a standardized prospective payment system. The differences in state regulations and mandates, as well as specific policy guidelines, mean that private insurance has significant variation. In regard to home health care, home visits are limited and home health agencies must get approval for the number of visits they make. These limitations have significant impacts on care recipients, and they structure the work processes for caregivers and nurses alike. The chapter also talks about the system's complexity and the disparities in coverage among various payer sources. The fragmented nature of payer sources greatly affects patients and caregivers, who often negotiate systems with limited knowledge. A large problem for people interviewed in this book was that they didn't know about waivers and other services that were available to them and didn't apply for them when they could have. Caregivers often found out about waivers from acquaintances, family members, or others. Currently, the multiple-payer system promotes confusion, additional stress, and uncertainty.

Introduction

This chapter gives a brief introduction of the significance of the work of caregivers and what it's like to work as a caregiver. It talks about the debate over home health care. The “home care is best” view casts the home as a place of rest and healing, and emphasizes the patient's comfort and the caregiver's love and concern. This view, however, downplays the costs associated with caregiving. There are issues with balancing work and family care, and many caregivers experienced sleeplessness and anxiety. Though most caregivers developed a “you do what you have to do” attitude and were able to figure out a way to perform the tasks, it was not a simple process. The chapter also discusses how caregivers are primarily forced laborers. “Home care for all” downplays caregiver labor and does not consider unmet caregiver needs or the particular nuisances of the home health situation. It discusses how workplace scholars have generally confined their analyses of medical labor to paid wage labor. By recognizing only those who are compensated, scholars allow capitalism to define work processes and to determine who it is that we consider as workers. This began a dichotomous division of labor whereby unpaid work in the “private sphere” was seen as personal and emotional, and paid work in the “public sphere” was seen as rational and productive. The separate-spheres construct not only fails to recognize the enormous contributions made in the private sphere, but also ideologically places “love” in the home and “labor” in paid jobs.

Work Shifts

This chapter takes a closer look at caregiver/nurse interactions. It includes an analysis of the identities and emotional labor of home health nurses. As professionals who possess valuable disciplinary knowledge, how do they feel about transferring their skills to lay caregivers? Nurses' orientation to the labor and the effects on interactions with caregivers are key features in the labor transfer. Nurses were able to gradually transfer the skilled labor through strategies such as “gently encouraging” or “forcefully 'pushing' ”caregivers to learn, and “if the caring work appeared too difficult or technical, nurses simplified or 'downplayed' these aspects, or they would insist that the caregiver was 'smart enough' to learn.” Nurses often stated that the goal was to make patients and families “independent” in their care. Nurses thus draw heavily on the ability of home care to provide holistic nursing practices. Nurses' focus on patients' physical and emotional health refutes a vision of nurses as purely “ideological workers” — an image that implies an insensitive and coercive nature in the transfer of skills. The relationship between nurses and caregivers is critical for nurses, who identify heavily with the education component of their profession.

On-the-Job Training

This chapter talks about the different teaching strategies nurses employ to train caregivers, and the different ways in which caregivers learn in training. Nurses develop strategies based on caregivers' and care recipients' readiness and different levels of knowledge. One of the first things they report doing when making initial contact is to find out what the expectations are, and manage them. Another strategy nurses say they use, especially if someone is hesitant or has anxiety, is to give emotional reassurance, including “lots of praise,” positive reinforcement, and encouragement. In terms of hands-on work, all nurses state that the general process is to demonstrate to the caregiver and/or care recipient exactly what they are going to do, allow them to watch and ask questions, and then observe a return demonstration. It is evident that there is a great deal of variability in how home health nurses convey information. While some of this may be due to agency policies or norms, nurses have different teaching philosophies and styles and are often given much leeway as to how they transmit information. The fragmented nature of the system means that caregivers may experience vast differences in communication processes and in the training they receive. The chapter discusses how caregivers train in three different conditions: caregivers who received prolonged training in rehabilitation facilities and hospitals, caregivers who received some training in hospitals, and caregivers who received little or no training in hospitals.

“You Do What You Gotta Do”

This chapter examines the complexity of caregivers' feelings about the labor they perform; it probes their emotions and their identities. How do they frame and make sense of the labor they perform? How are their perspectives tied to their identities? These questions are asked within the framework of prior studies of emotion work and emotional labor and Erickson and Stacey's theory of emotion practice, which advocates considering both macro- and microprocesses, as well as context, in examining the emotional labor of both paid and unpaid workers. Nurses have multifaceted forms of emotional labor and are skilled “emotional jugglers” who are able to adapt to the situation at hand without experiencing negative impacts on their identity. The chapter also take insights from Lopez's organized emotional care, which demonstrates how structural supports have been instrumental in reducing the emotional burdens of paid care workers in institutional settings. The analyses of emotion and identity for caregivers and nurses alike are seen within the context of the mutual labor process that is enacted — a labor process that transfers professional skills from paid to unpaid workers.

Conclusion

This chapter proposes how positive change can be made for families who are enacting skilled medical labor. Caregivers' journeys with care recipients reflect varied experiences in interactions with medical professionals and in the training they receive. Though many caregivers experience feelings of anxiety and worry, they say they “do what they have to do” to provide care for those they love. It is the relationship with the care recipient that motivates their labor, and despite some ambivalent feelings, many have strong feelings against institutionalization. Positive change can be made for families who are enacting skilled medical labor and improve the work process for caregivers, care recipients, and nurses alike through robust national policies that support family care work are in order. Home support would also increase the confidence of caregivers and reduce emotional burdens by having credentialed nurses and health care professionals make regular home visits and providing more in-home support are essential. Adequate work leave policies for families should also be in place. The financial needs of caregivers should be considered, including their loss of jobs and income. The existing policies have been fragmented, state driven, targeted only to certain care recipients and their caregivers, and highly dependent on complicated Medicaid waivers. It is time to recognize and compensate caregivers for the work they do and to make sure that care recipients also have adequate support.

Integrating Care Work with Life

This chapter discusses what it's like for caregivers to work at home in contrast to work done by nurses in the hospital. Homes, by their very nature, lack the resources and support of a hospital, and often geography — the physical separation between the home and the hospital — places obstacles in the coordination of care. Unlike bureaucratic settings, which have standard work shifts, care work at home takes place over a twenty-four-hour period and caregivers' schedules are completely different from the schedules of the organizations they depend on for resources, such as delivery companies, vendors, or pharmacies. As is evident from contrasting the bustle of a busy hospital with the atmosphere in many homes, the division of labor and the people who do it are entirely different. In the hospital, nurses work in shifts to provide patient care. At home, there are far fewer people available, and they are in deeply embedded, preestablished familial roles and relationships, as well as existing patterns of housework and childcare. Because home is oriented toward relationships, “private” activities, and provisioning, rather than toward bureaucratic standards, compliance with medical regimens can also be more difficult. Whether or not caregivers received training in the hospital or rehabilitation, most said they were still very anxious, sometimes even overwhelmed and frightened, the first time they had to perform procedures by themselves at home. Caregivers dealt not only with the medical procedures, however, but also with their feelings about the care recipient's overall health and prognosis, and whether the recipient would be able to adapt to new regimens.