2
The People Who Receive and Provide Home Health Care

FITTING PEOPLE TO HEALTH CARE IN THEIR HOME ENVIRONMENTS1

About one-sixth of the U.S. gross domestic product is currently being spent on health care—about $7,000 annually per U.S. resident. Almost 90 percent of those expenditures involve people with chronic conditions—treating either their chronic diseases or acute conditions that they develop, said Neil Charness. Chronic diseases, according to a definition adopted by the Centers for Disease Control and Prevention, are “noncommunicable illnesses that are prolonged in duration, do not resolve spontaneously, and are rarely cured completely.” The most costly chronic conditions include heart conditions, cancer, trauma-related disorders, mental disorders, and asthma plus chronic obstructive pulmonary disease (COPD). The percentage of people with chronic conditions increases with age, to the point that more than 90 percent of people older than 85 have one or more chronic conditions.2

The bulk of health care expenditures is spent on hospital care and physician services, Charness observed. “If I were trying to cut costs in this very costly system, I would try to eliminate as much as possible unnecessary visits to hospitals and unnecessary visits with physicians, because those are

1

This section is based on the presentation by Neil Charness, William G. Chase professor of psychology at Florida State University. For more information and for references to the information cited in this presentation, see Chapter 6.

2

Tables and figures illustrating this and other statistics cited here can be found in the papers in Part II.



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2 The People Who Receive and Provide Home Health Care FITTING PEOPLE TO HEALTH CARE IN THEIR HOME ENVIRONMENTS1 About one-sixth of the U.S. gross domestic product is currently being spent on health care—about $7,000 annually per U.S. resident. Almost 90 percent of those expenditures involve people with chronic conditions— treating either their chronic diseases or acute conditions that they develop, said Neil Charness. Chronic diseases, according to a definition adopted by the Centers for Disease Control and Prevention, are “noncommunicable illnesses that are prolonged in duration, do not resolve spontaneously, and are rarely cured completely.” The most costly chronic conditions include heart conditions, cancer, trauma-related disorders, mental disorders, and asthma plus chronic obstructive pulmonary disease (COPD). The percent- age of people with chronic conditions increases with age, to the point that more than 90 percent of people older than 85 have one or more chronic conditions.2 The bulk of health care expenditures is spent on hospital care and physician services, Charness observed. “If I were trying to cut costs in this very costly system, I would try to eliminate as much as possible unnecessary visits to hospitals and unnecessary visits with physicians, because those are 1 This section is based on the presentation by Neil Charness, William G. Chase professor of psychology at Florida State University. For more information and for references to the infor- mation cited in this presentation, see Chapter 6. 2 Tables and figures illustrating this and other statistics cited here can be found in the papers in Part II. 

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10 HUMAN FACTORS IN HOME HEALTH CARE the two biggest slices of the pie.” Home health care has the potential to reduce both of those costs. Assessing Efficacy The efficacy of much of the current health care that takes place in homes is unknown. For example, some assistive devices have high abandon- ment rates. “Something like 30 to 50 percent of people who adopt or are fitted for a hearing aid will put it in a drawer and not use it at some point,” said Charness. Yet many people also express a preference to be treated in their homes. As one measure of this preference, in Canada from 1994 to 2004 the percentage of total deaths that occurred in hospitals declined from 78 to 61 percent. In analyzing home health care technologies and practices, Charness and his colleagues often assess the fit of capabilities and demand. Health care devices, technologies, and practices can make many demands on a person’s capabilities. A videoconferencing system, for example, might have a software interface that a care recipient has to understand in order to use the technology. But users differ greatly along many dimensions, including their age, their education, their health literacy, their technical experience, and their perceptual, cognitive, and psychomotor capabilities. These factors affect outcomes like efficiency, efficacy, and safety. Thus, the outcomes of home health care depend on the fit between a device, technology, or practice and a person’s capabilities. Charness used as an example an older person who has just been diag- nosed with adult-onset diabetes. Such a person might be told to monitor blood sugar levels, inject insulin, and modify diet and exercise. All of these tasks can be difficult for many people. They may not like to use a glucose meter or inject insulin. They may also have unrealistic expectations, thinking that changes in diet or exercise will immediately improve their condition. “If you don’t have appropriate expectations, that can lead to inappropriate adherence to the routine that you have been asked to engage in,” Charness said. The Diversity of Home Health Care users Home health care is an extremely diverse enterprise. It encompasses people with very different illnesses and capabilities, from children with diabetes to young adults with mental illnesses to middle-aged adults who might be taking medication for hypertension to older adults with dementia or renal failure. The home environment also exhibits tremendous diversity. About 27 percent of all the households in the United States have single members, rising from a low of 17 percent for adults under age 20 to as

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11 THE PEOPLE WHO RECEIVE AND PROVIDE HOME HEALTH CARE high as about 57 percent for people over age 75. The proportion of people with disabilities increases greatly with age as well. However, because the population of younger people is larger, the absolute numbers of people with disabilities are higher among people ages 21 to 64 than among those over age 64. On average, men tend to become disabled earlier in their lives than do women. Veterans represent an important subset of the disabled population. According to the U.S. Department of Veterans Affairs, about 2.6 million veterans were considered disabled and were being compensated in 2007. The most prevalent types of disabilities are musculoskeletal and mental disorders, including posttraumatic stress syndrome. Hearing problems and diabetes are also fairly common and can have an influence on home health care. The U.S. population is itself exceedingly diverse along many dimen- sions, such as language, financial resources, attitudes, insurance coverage, Internet access, and media exposure. Minority groups are growing as a portion of the population, including the elderly population. Many different languages are spoken at home in the United States—not only English and Spanish but also Slavic languages, Asian languages, and many others. In addition, an estimated 11 million U.S. residents have below basic literacy skills, which limit their ability to perform even relatively simple tasks. Although access to the Internet has been growing for all populations, including the elderly, only about 40 percent of people over age 65 had Inter- net access in 2008. Interestingly, almost 50 percent of them report using a cell phone. Differing minority groups also have different levels of access to the Internet and cell phones. As people get older, their hearing and vision often decline, to the point that medication instructions that younger people can make out easily are difficult for many older people to read. Similarly, medical devices, such as oxygen concentrators, may need both visual and auditory warnings to alert older users to potential hazards when the equipment is failing. The learning rate slows with age, so that it can take an older adult between 50 and 100 percent longer to learn new material. As a result, device designers, for example, need to take learning time into account so that people don’t become frustrated and give up on a device. Finally, attitudes toward health care differ greatly. For example, people generally have to believe that a medication is going to improve their condi- tion to stick to a prescription regimen. The opinions of family and friends can also be an important predictor of someone’s willingness to engage in a particular behavior. Some people comply with societal norms, and some do not. People also differ in their beliefs about their own ability to follow a routine or engage in a behavior.

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12 HUMAN FACTORS IN HOME HEALTH CARE Privacy Concerns As home health care expands, increasing amounts of health care infor- mation will be transmitted to and from the home. For example, vital signs or activity can be monitored through home-based devices, with reminders for people to engage in particular activities. “Aware homes” or robots could serve as health care coaches. Such developments raise concerns about privacy and confidentiality. For example, care recipients may have greater concerns for confidentiality with regard to telemedicine than in face-to-face exchanges with a health care provider. Internet users also express a strong preference for privacy, although their online behavior does not always accord with this preference. More impaired care recipients are more willing to cede some degree of privacy and confidentiality regarding such issues as toileting, medications, movement in the home, cognitive abilities, and driving. But they often are unwilling to share that information with insurance companies or govern- ment agencies. Human Factors Tools Human factors research has produced a number of tools that can be used in the analysis of home health care, Charness said. Focus groups and questionnaires, task analysis, usability testing, and modeling and simula- tion can all contribute to the design and implementation of home health care devices, technologies, and practices. As an example of how these tools might be applied to an older adult with newly diagnosed adult-onset dia- betes, focus groups and questionnaires might uncover a gap in expectations regarding the results of diet and exercise. Task analysis and usability test- ing could lead to better equipment design and instructional materials. And better health instruction earlier in the life span might have led to a lifestyle that prevented adult-onset diabetes. Improving the use of Human Factors Research in Home Health Care Charness had a number of ideas for furthering the use of human factors research in home health care: • Promote usability testing for more home health care devices, includ- ing smart phones, webcams, cognitive training systems, and even videogames that could be used in rehabilitation programs. • Assess home health care efficacy and efficiency through randomized trials. • Examine attitudes to such issues as technology adoption and aban- donment through tools like the Current Population Survey.

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1 THE PEOPLE WHO RECEIVE AND PROVIDE HOME HEALTH CARE • Conduct research on instructional and training principles, espe- cially for older users, disabled users, non-English-speaking users, and users with low health literacy. • Promote secure, high-speed Internet access to all households. • Develop more detailed knowledge about the home, including such features as electrical wiring and access to wireless and broadband communications. This is particularly important in the homes of disadvantaged people, who are less likely to be represented in trials of home health care systems. Responses to Questions Charness was asked how the designers of home health care systems can accommodate the very broad range of users of such systems. He acknowl- edged that “the entire U.S. population, from small children to older adults, are potential home health care users,” which makes the problem of design very difficult. Part of the solution is to have good data on what the differ- ences are. For example, in what ways do women differ from men? How should variations in language or age affect the design of home health care devices? “Chances are, for certain types of devices, you can define who the user population is reasonably narrowly,” he said. Charness also described potential variations in the level of trust that dif- ferent groups may hold toward home health care providers or technologies. These levels of trust can vary by age, ethnicity, or other factors. In some cases, people trust health care devices too much, even when a device is unreliable or needs to be checked. Similarly, the providers of home health care may trust or mistrust different categories of care recipients to different extents. One questioner discussed the use of social networking technologies to advance home health care, both by providing information to care recipients and by allowing recipients with conditions such as depression to connect with each other. Charness pointed out that virtual groups, even if they include large numbers of people living alone, can be large and geographically extended. INFORMAL CAREGIVERS: FAMILY, FRIENDS, OTHERS Many of the people who provide home health care are not paid profes- sionals but family members, friends, and other lay providers, said Richard Schulz. Most people will play this role at one time or another in their life, but estimating the prevalence of informal caregiving is complicated by the 3 This section is based on the presentation by Richard Schulz, professor of psychiatry and director of the University Center for Social and Urban Research at the University of Pittsburgh. For more information and for references to the information cited in this presentation, see Chapter 7.

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1 HUMAN FACTORS IN HOME HEALTH CARE absence of a standard definition for either a family or an informal caregiver. Other countries have formal definitions of what it means to be a family caregiver, and those definitions are used to shape policy, but no such defini- tion exists in the United States. “Getting a handle on this problem requires, to some extent, that we achieve consensus and apply a good definition of what we mean by family caregiving,” Schulz said. The largest category of people receiving informal home health care consists of adults with chronic health problems or disabilities, and their providers tend to be middle-aged and older parents and spouses. The sec- ond largest category is children with chronic health problems or disabilities. An estimated 22 percent of households with children fall into this category, and their caregivers are typically young to middle-aged parents and some- times grandparents. A large group about which relatively little is known is people who are discharged from hospitals. Roughly 40 million hospital discharges occur each year, and these individuals generally are cared for by adults of all ages. This group overlaps with the other two, but they have different kinds of needs for home health care. After hospitalization, needs tend to be more acute, and informal caregivers can be required to provide highly specialized and technical assistance. There are interesting subgroups within these larger populations, Schulz observed. For example, about 2.5 million grandparents in the United States provide care to children. In another reversal of expectations, about 1.5 mil- lion children provide health-related care to their parents. These two situa- tions present very different challenges, even though both groups would be characterized as family caregivers. Roles and Responsibilities of Caregivers Given that much caregiving is provided to older individuals, a typical caregiver is likely to be female, middle-aged, and somewhat more educated than the population at large, often with at least some college education. Although they typically spend more than 20 hours per week providing this care, informal caregivers also may be employed in other jobs full or part time. They typically have been providing care for about four years, although of course some caregivers have quite different experiences and characteristics. Among the adult recipients of care, approximately 80 percent are age 50 or older and have mostly age-related disabilities. Another relatively large group consists of adults ages 18 to 49, often with mental illness. War veterans with chronic diseases and disabilities are a smaller group that can have lifelong and very intensive needs. The most common disabilities occurring in children are learning dis- abilities; attention deficit disorders; other mental, emotional, and behavioral

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1 THE PEOPLE WHO RECEIVE AND PROVIDE HOME HEALTH CARE problems; intellectual disabilities; developmental disabilities; asthma; speech or language problems; and diseases such as cancer and diabetes. These prob- lems tend to vary with the age of the child. Speech problems are common early in life but tend to recede later, and learning disabilities are more likely to arise later in childhood. The most common forms of care provided by informal caregivers are assistance with activities of daily living (ADLs) or instrumental activities of daily living (IADLs),4 medication management, and care coordination, which involves figuring out what kind of care is needed, where to find care, and how to arrange for care. Informal caregivers also may need to negotiate among family members. “This is particularly an issue with elderly caregiving,” said Schulz, “where adult children may have different opinions about what should be done, and the primary caregiver plays the role of negotiating and settling disputes within families.” Informal caregivers pro- vide companionship and emotional support. In some cases, they perform very complex medical and nursing tasks, such as infusion therapies or tube feeding. Care coordination can be particularly challenging. Even seasoned health professionals who need to coordinate care for a parent or sibling can find it extremely difficult to access complex and fragmented health and social service delivery systems. In response to this difficulty, some systems have been organized that provide essentially one-stop shopping for caregivers looking to coordinate care. Schulz cited as examples Child’s Way and the Program of All-Inclusive Care for the Elderly (PACE). PACE, a Medicare program for older adults and people over age 55 liv- ing with disabilities, provides community-based care and services through local centers to people who otherwise need nursing home level of care. “At least from my limited perspective, [these systems] have been very success- ful in achieving that goal.” But these two programs have strict eligibility criteria and are not widely used. All of the tasks undertaken by informal caregivers are amenable to training. A small industry has taken shape in the United States focused on how to teach caregivers to provide home care services. A variety of technology-based strategies are also available, such as telehealth—that is, the delivery of health-related services and information via telecommunica- tions technologies—or computer-based communication systems, that enable a caregiver to be in touch with a professional provider who can guide them through issues that they are facing. 4 Activitiesof daily living are activities performed for self-care, work, or leisure, such as eating, bathing, or grooming. Instrumental activities of daily living are activities that allow an individual to live independently in a community, such as preparing meals, shopping, or using the telephone.

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1 HUMAN FACTORS IN HOME HEALTH CARE The Ability to Provide Care Caregiving can have adverse effects on individual providers and under- mine their ability to provide care. A large research literature links the stress of caregiving to a variety of physical and psychological stress conditions. Physiological indicators, such as stress hormones, neurotransmitters, cardio- vascular measures, and metabolic measures, all show a worsening on aver- age for caregivers, although the effects tend to be relatively small. Health habits, such as sleep, diet, self-care, and medical adherence, also suffer, although, again, the effects are not large. However, several methodological issues in these studies may cause the relationship between caregiving and health effects to be underestimated. For example, recent work suggests that the effects of caregiving in terms of both health and economic costs may not show up until later, after a person is no longer in that role. The evidence of effects on mental health is stronger, according to Schulz. Depression, anxiety, stress, and other mental conditions are associ- ated with taking on and moving through the caregiving role. However, it can be difficult to unravel cause and effect in these studies. What is needed, said Schulz, are prospective studies in which people are tracked as they move into and out of the caregiving role. Caregiving tends to evolve over time, from assistance with instrumental activities of daily living to more intensive forms of caregiving. For elderly caregiving, the progression can continue into some kind of institutional placement and then death. When caregivers are followed prospectively through this progression, strong evidence emerges that the middle phase, in which caregiving responsibilities are very intense, produces the most profound health-related effects. There is some evidence of increased risk of mortality in this population of caregivers. Institutional placement does not relieve many of these stressors, in part because caregivers remain involved in providing care. Death, paradoxically, does provide relief. Caregivers can recover quite well after the death of the person that they have been caring for, even if it has been an intensive caregiving experience. Laboratory studies have demonstrated that exposure to stress can reduce executive functioning, prospective memory, working memory, speed of processing, and other mental capabilities. This raises the question of how stress in caregivers affects their performance. “I’m not aware of any literature that has directly tested this, but my best guess would be that those effects would be profound, particularly with older individuals where reserve capacities are limited due to aging,” said Schulz. Depression, which is highly prevalent among caregivers, can also have major effects on motivation, performance, and functioning. Depression can erode informal support and isolate the individual from valuable sources of

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1 THE PEOPLE WHO RECEIVE AND PROVIDE HOME HEALTH CARE information that is needed for caregiving. There is even some evidence that severe depression is associated with elder abuse. Sociodemographic factors also play into the effects of home health care on caregivers. Informal caregivers tend to have lower socioeconomic status, and this status might be affected by the caregiving experience itself. Evi- dence indicates that some caregivers leave the workforce in order to provide care, which may have long-term consequences with respect to pensions and other kinds of economic indicators, particularly for women. Older caregivers are more subject to developmental declines, such as hearing loss, visual impairment, and decreasing strength and mobility. “Lifting an individual who weighs 200 pounds out of a bed or out of a chair, when you weigh 90 pounds, is a potentially formidable task,” said Schulz. Declines in cognitive function also affect the ability to acquire skills and provide complex care. Assessments of family members caring for some- one at home often uncover disability and cognitive declines in the person providing the care. Furthermore, these declines tend to be more similar than dissimilar in the providers and the recipients of care. People tend to select each other based on disability, Schulz observed. They also have similar life- style and environmental exposures. “If they have been married for 40 years, they have been doing the same things, eating the same foods, so they end up with the same disabilities.” The Mismatch Between Demand and Capability The need and demand for home health care are going to increase dra- matically in the future. The aging of the baby boom generation, increased survival of infants and children with disabilities, an increase in such dis- abling health conditions as obesity and diabetes, and new populations of disabled people, such as veterans of recent wars, are all going to increase the need for home health care. Meanwhile, fewer children of baby boomers to provide care, fragmented and geographically dispersed families, the high costs of formal care, and a lack of appropriately prepared health care pro- viders create a dire picture on the supply side. Schulz had several ideas for easing the mismatch between demand and capability: • Identify the stressors in the caregiving experience. Studies should differentiate among such factors as the functional disability of the care recipient, the care demands, the coordination of care, and the suffering of the care recipient. Policy should then be based on an in-depth understanding of the caregiving experience. • Coordinate formal and informal health care. The task demands of informal care should be known in order to assess the capacity

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18 HUMAN FACTORS IN HOME HEALTH CARE of caregivers. Caregiver performance and recipient status should be monitored, and training and tools should be provided to health and social service providers. • Adopt a standard definition of caregiving. This definition could be used to assess the prevalence of informal caregiving and its public health burden in terms of what kinds of care are being provided, for how long, and at what cost. This definition should be applied consistently in national surveys, such as the decennial census, Schulz said. • Fast-track technology options. Emerging technologies could be very useful in training care providers, monitoring caregivers and recipi- ents, and enhancing functioning and autonomy. More emphasis needs to be placed on implementation as opposed to developmental research, and privacy concerns need to be addressed. Many people in America today are unprepared to provide or to receive care, said Schulz. Two-thirds of U.S. adults expect to be a caregiver in the future, but most admit to being unprepared. “We need campaigns to educate adults about the likelihood of their becoming caregivers, the likelihood of their being care recipients, and how to plan for those eventualities,” said Schulz. Responses to Questions Schulz observed that assessing the need for home health care should be a factor in the ongoing debate over health care reforms. Many medical societies have advocated that when a person comes to a clinic for treatment, health care providers should assess the family members who are involved with care of that individual in the home. But these efforts are currently splintered, poorly funded, and in need of coordination. A person’s needs for home health care also vary over time. In the early stages of a disability or disease, preventive activities may be important. Later in a caregiving experience, technologies that make individuals more independent can have a big impact. Today, human factors research tends to focus on the later and more intensive caregiving period and slight the early-stage opportunities for prevention, along with the transitions that occur toward the end of the caregiving experience. In response to a question about remote caregiving, Schulz observed that this is likely to become more important given the geographic dispersal of families. A large private-sector market is emerging to facilitate remote caregiving—for example, by facilitating communication via computer and video. These activities are likely to increase, which will raise questions about how to do them best. For example, an ideal system might be triangu- lar among the care recipient, the family, and the health care team.

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1 THE PEOPLE WHO RECEIVE AND PROVIDE HOME HEALTH CARE When asked about the motivations of caregivers, Schulz replied that many caregivers provide care not because they want to but because they have to. Their reasons for providing care may vary, and data show that these reasons can make a difference. For example, people who are forced into the role tend to do worse than people who perform it voluntarily. New technologies offer considerable potential for enhancing the func- tioning and capabilities of older persons. Many such technologies are ready to be deployed but have not yet been implemented on a large scale. Federal agencies need to devote more attention to the translation of technologies into the community and into homes. One-stop care coordination can make a huge difference to care pro- viders and recipients. But services and care providers tend to be fragmented, making it difficult to achieve such coordination. The basic problem, said Schulz, is cost. Programs like PACE do a good job, but they are expensive to implement on a wide scale. “There must be a middle ground somewhere. Maybe it requires a radical reorganization of the health care system in order to achieve. But the current system is clearly not sustainable.” FORMAL CAREGIVERS5 Paula Milone-Nuzzo defined formal caregivers as clinicians and trained individuals who receive compensation to provide intermittent or continu- ous in-home services. These services can be provided by a traditional home care agency, a community or social service agency, or for-profit providers. The vast majority of in-home formal caregiving is provided by person- nel from traditional home-visiting programs, such as home care, hospice, and maternal/child health services. The remainder is provided by diverse community-based organizations, such as PACE, area aging programs, and organizations that support independent living by persons with physical, cognitive, psychiatric, and developmental disabilities. Even though formal caregivers are paid employees, they can develop deep and significant relationships with care recipients, Milone-Nuzzo said. As a result, they can experience the same psychological and physical impact of caregiving as informal caregivers. It is impossible to discuss formal home health care deliverers without also discussing Medicare and Medicaid, said Milone-Nuzzo. Together, Medicare and Medicaid represent by far the largest funder of home care services, and they influence how other organizations pay for them. 5 This section is based on the presentations by Paula Milone-Nuzzo, dean of the School of Nursing at the Pennsylvania State University, and Carolyn Humphrey, an independent con- sultant specializing in administrative and management operations, regulatory compliance, and education for home health care nurses.

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20 HUMAN FACTORS IN HOME HEALTH CARE Reimbursement rules, set by both government agencies and insurance companies, dictate the parameters of care. Similarly, the paperwork bur- den that accompanies something as simple as an admission to a home care agency strongly affects professional caregivers. The Centers for Medicare & Medicaid Services, the federal agency that administers Medicare and Medicaid, has many new and ongoing initiatives under way that support best practices in the provision of Medicare services. It also has initiated a new focus on comparative effectiveness research. Characteristics of Formal Caregivers Formal caregivers can be divided into two categories: (1) professionals include nurses, physicians, therapists (including physical therapists, speech and language therapists, and occupational therapists), dieticians, and social workers; and (2) direct-care workers include home health aides, home- makers, companions, and patient care attendants. Typically, formal pro- viders work in interdisciplinary teams of professionals and direct-care workers to assist care recipients to achieve their health and daily living goals. While physicians generally have the formal responsibility for ordering home care services, home care nurses or physical therapists often develop the plan of care, based on their knowledge and expertise, and send it to the physician for approval. Other professional caregivers and direct-care workers become part of the team as needed. Other providers that are important to the home care delivery system include medical equipment providers, oxygen providers, and organizations that provide medical supplies; for-profit organizations that provide house- keeping, personal care, rehabilitation, and companion care; and community- based programs such as Meals on Wheels, care management programs, and well-baby care. The organizations that provide these kinds of services often offer a discrete service to particular age groups. For example, oxygen pro- viders very often offer just oxygen. For-profit care tends to be focused on meeting unmet needs for care recipients who can afford to pay privately. The largest group of professional home care employees is made up of registered nurses and licensed practical nurses, representing 21 percent of all home care employees and more than 80 percent of professional home care workers. In contrast, speech and language therapists, physical therapists, occupational therapists, social workers, and dieticians together represent just 5 percent of all home care employees. Physicians should also be included in a list of professional home caregivers, although the number of people who provide these services is unknown. Fewer than 1,000 physicians belong to the National Association for Physicians in Home Care, and only about 1,500 are in the American Academy of Physicians in Home Care. Furthermore, these proxy measures

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21 THE PEOPLE WHO RECEIVE AND PROVIDE HOME HEALTH CARE of physicians who provide home care also include physician assistants, nurse practitioners, and home care administrators, “so we really didn’t get a good number for the number of physicians who are practicing in home care,” said Milone-Nuzzo. The competencies of professional home care workers are defined both by the scope of practice, which varies from state to state and from one pro- fessional discipline to another, and by health care regulations. For example, the responsibilities of a licensed practical nurse differ from the responsibili- ties of a registered nurse in home care. While the complexity of care has increased over the years, the educa- tional preparation of professional nurses has remained relatively stable. In 2000, 60 percent of the nurses practicing in home care had either a bacca- laureate or an associate’s degree. Nursing has multiple entries into practice, and home care is the most autonomous setting for practice. These factors lead to a lower level of education and professional development among home care providers than in most clinical care settings. “There may be an impact on patient outcomes,” Milone-Nuzzo said. The use of advanced-practice nurses6 in home care has lagged behind their involvement in other practice settings. The reasons for this disparity include a lack of well-defined roles for them in home care, restrictive reimbursement mechanisms, and regulatory challenges pertaining to the scope of practice. In addition, only a few research programs have looked at the use of advanced-practice nurses in home care. Direct-care workers, who represent a large proportion of the home care workforce, include home health aides, companions, homemakers, and personal-care attendants. Their responsibilities include personal care, housekeeping, companionship, and assistance with activities of daily living. In 2006, approximately 42 percent of the estimated 3 million direct-care workers in the United States cared for individuals in their homes. “Being knowledgeable, skilled, and culturally competent is just as important for the direct-care worker group as it is for the professional care worker group.” In traditional home care systems, direct-care workers are supervised by professional caregivers in the home setting. A plan of care is defined by the professional, and regular supervisory sessions provide a way to determine the quality of care that is being provided. But consumer-driven models of care are also common in the direct-care workforce. These models, often supported by states, use direct-care workers who are employed by the recipi- ent of care, with payment to the worker made directly by the program or through reimbursement of the care recipient. While these direct-care workers 6 Advanced-practice nurses are nurses with master’s degrees who are qualified, and often licensed or certified, to practice in such roles as nurse practitioner, nurse anesthetist, nurse midwife, and other specialties.

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22 HUMAN FACTORS IN HOME HEALTH CARE may have some supervision and direction from a home care professional, they typically do not have the amount of supervision or regular contact with a health care professional required by traditional home care agencies. A third group of home care providers consists of people hired by individuals in the home to do health care. They are the least supervised of all the direct-care workers. Sometimes referred to as occupants of the gray zone of direct-care workers, they often work off the books, are hired without background checks, and arrive with unknown skill levels. They are not eligible for workers’ compensation if they should get hurt and very often do not pay Social Security. “It’s a market that is highly unregulated,” said Milone-Nuzzo. Direct-care workers, even those in formal home care agencies, often receive little formal training before beginning employment. Home health aides who work in Medicare- and Medicaid-certified home care agencies are required to have a minimum of 75 hours of training, including class- room content and clinical experience, and they are required to pass a test. Aides are allowed to work up to four months before getting that training. Subject areas covered in the training include communication skills, reading and recording vital signs, infection control, assistance with bodily functions and changes in bodily functions, mobility transfers, and basic nutrition. Homemakers and companions require no formal training. As the overall population ages, so do the populations of nurses and other professional caregivers. Approximately 50 percent of the registered nurse workforce will reach retirement age in the next 15 years. At the same time, the number of physical therapists and occupational therapists who graduated in 2003 and 2004 was significantly smaller than the number who graduated in 1998 and 1999. Primary care physicians are another group of providers currently experiencing shortages that are expected to become more severe in the future. Cultural values can have an impact on the quality of care provided. Income and socioeconomic status are variables that affect how professional caregivers interact with care recipients. The caregiver and the care recipi- ent are often not of the same culture or socioeconomic status. Direct-care workers tend to have a high school diploma or less education. Half are nonwhite, and most are married with children; 20 percent live below the poverty line; and almost half are on public assistance. Potential differences in culture and socioeconomic status require cultural competence of both the provider and the recipient of care. Challenges for Formal Caregivers Carolyn Humphrey elaborated on the challenges facing formal care- givers, who have great responsibility and great autonomy in their work.

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2 THE PEOPLE WHO RECEIVE AND PROVIDE HOME HEALTH CARE They generally work alone and cannot easily consult with colleagues. They may be the only person who sees a care recipient. Or, in other situations, such as a newborn coming home with complex needs, they may be part of a team of nurses, physicians, therapists, and aides working together. Formal home care providers experience several issues associated with reimbursement policies. Most reimbursement structures pay either by the visit or by the hour but do not pay for interactions with other professionals, which can further increase the isolation of home care providers. Also, if a medical device is not approved by Medicare, then it will not be reimbursed by either the government or insurance companies. This can also be an issue when a device needs to be tailored to an individual. If the needed device is not reimbursed, then recipients often just do without. “They will get the one that maybe doesn’t fit them best,” said Humphrey. “That’s a very big human factors issue.” Professional organizations serving home care providers are minuscule. The nurses’ association under the National Association for Home Care has only about 100 members. Home health care recently lost its ability to be certified by the American Nurses Credentialing Center because not enough people were being encouraged to be credentialed. According to Humphrey, “There is no financial incentive, surely not by insurance companies and not by the federal government, to have that kind of qualification.” Likewise, the American Physical Therapy Association and the Occupational Therapy Association have special interest groups for home care, but they are small work committees that look at specific home care issues. The American Speech-Language-Hearing Association does not have such a group. Education in home health care is lacking in most of the curricula of pro- fessional disciplines. As a result, such care providers as doctors or discharge planners often have little idea of what it is like to provide care in the home. “That can result in some unrealistic expectations, unrealistic orders for treat- ments, [or] things that aren’t applicable to the home environment.” There are no federal ergonomic guidelines for home care. Yet the trans- port of equipment and supplies is a responsibility that causes many injuries for home care providers. About two-thirds of U.S. adults are overweight or obese, yet home care providers often need to move these individuals by themselves. Assistive devices are often recommended, but their use is usu- ally assessed relative to the needs of the recipient, not the care provider. Professional care providers often have a mobile office, performing clinical documentation in the home, the employee’s car, or the employee’s home. Human factors issues, such as noise, distractions, and poor light can be critical in such settings. Formal home providers also encounter violence in neighborhoods and homes. Caregivers can be targets of attack, or they can be bystanders during other instances of violence.

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2 HUMAN FACTORS IN HOME HEALTH CARE Many technologies, such as clinical documentation systems, affect for- mal caregivers directly. For example, many home care providers have point- of-care devices, such as laptops or tablet devices, that they use in their care and their documentation of care. But many times these devices have been created by simply putting traditional paperwork in electronic format, so the care provider is just checking off forms and doing repetitive work. The same can be true for various medical devices, including both new devices and older ones that a provider or recipient already owns. In addition, every device has environmental parameters that must be considered. For example, Humphrey pointed out that temperatures in indi- vidual homes may vary from 60 to 120 degrees. This can be an issue not only for the operation of devices but also for the caregivers themselves. Telemedicine and remote monitoring of care recipients in their homes similarly raise many human factors issues. Many home care providers say that they left jobs in institutions because they did not have enough manual dexterity to perform particular tasks. Care providers both in institutions and in homes can also be very anxious that they will lose their jobs if tech- nology becomes too efficient. “There are some built-in issues about not wanting the devices to work.” Humphrey offered some suggestions related to formal home care pro- viders. In the area of policy, she suggested the following: • Better entries into practice for nurses at the baccalaureate level. • An improved role for direct-care workers. • Involvement by the Food and Drug Administration with manufac- turers and formal caregivers on medical devices used in the home. • Involvement by the Occupational Safety and Health Administra- tion in issuing home care guidelines. • Raising consciousness of human factors issues in the home health care community and among the recipients of care. • Exploring formal relationships between home health care providers and nursing education. • Communication between home health care technology manufacturers and human factors engineers. In the area of research, she suggested the following: • Effective strategies to educate formal caregivers on ways to improve care delivery and outcomes. • Human factors and home health care research in the field to opti- mize shared goals. • Human factors approaches for vulnerable care recipients and formal caregivers.

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2 THE PEOPLE WHO RECEIVE AND PROVIDE HOME HEALTH CARE Responses to Questions Humphrey identified the technologies used by home care providers as the number-one issue needing attention. “The point-of-care devices that they use are very unfriendly to the user.” For example, six different glucose monitors can have six different plugs, she observed. Improving such tech- nologies would save time, improve the accuracy of the data gathered, improve the care plans developed from those data, and enhance the moni- toring and reporting of home health care. When asked what she saw as the most important issue affecting formal home care providers, Milone-Nuzzo replied that it is the amount of educa- tion required for nurses in home care. Humphrey added that web-based education models hold considerable promise for delivering ongoing profes- sional education for working providers. In addition, continuing education done online and/or on demand could provide home care workers with information that they need when they need it. Care coordination is another critical factor, said Humphrey. Home care providers have often done this coordination, even when they were not reimbursed for it. But it can be very difficult to find enough time, given today’s reimbursement policies, to perform coordination tasks. DISCuSSION Margaret Quinn, professor in the Department of Work Environment at the University of Massachusetts–Lowell, began the discussion by review- ing some of the most important points to emerge from the session and the connections among those points. Many factors are contributing to rapid increases in the provision of home health care. Elderly populations in the United States are increasing rapidly, although the populations that traditionally have provided care are undergoing almost no increase. The 30 percent of people who need home care but are not elders have important needs that can differ from those of the elderly population. The home is not consistently or systematically considered as a care or work environment, which can have important human factors implications. Meanwhile, public opinion is disconnected from this confluence of factors, with many adults unprepared to deliver care and believing that they will not need care. Quinn noted that informal caregivers are often limited in their ability to provide care, partly because of a lack of training and social support. Home caregiving disproportionately affects women, racial and ethnic minorities, and those with low incomes, often at the peak of their own ability to earn wages outside the home. There also are significant psychological and health impacts on informal caregivers, such as musculoskeletal strains caused by lifting and ambulation. “I heard a nurse recently highlight that if in

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2 HUMAN FACTORS IN HOME HEALTH CARE [another industry] a worker is asked to lift a 200-pound object, they say, ‘Sure, I’ll go do that right away.’ They go get a forklift, and they drive it over and they move it.” The health and well-being of the informal caregiver and the care recipient are linked, Quinn said. With regard to formal caregivers, home health care is the fastest grow- ing segment of health care and one of the fastest growing industries in the United States. Personal and home care aides and home health aides are among the top 10 fastest growing jobs in the United States. However, short- ages and high turnover in the workforce, especially among aides, are creat- ing a crisis of care, leading to reduced care quality and increased costs. The heterogeneity of the home health care workforce has several human factors consequences. The direct-care workforce in home health care is rela- tively invisible. Many formal caregivers are not prepared for health care crises, such as pandemic flu, and many do not have health insurance. Little formal research has been done on formal caregivers and the human factors involved in their health and safety. Although many human factors issues are similar for formal and informal caregivers, there are differences that are not well understood. Quinn offered some suggestions in the areas of practice, research, policy, and education and training. In the area of practice, she suggested the following: • Create systems to coordinate formal and informal caregiving. • Expand and update the availability and quality of training to account for new technologies, procedures, and complexity. • Broaden the skill base of paraprofessionals. • Adopt a standard definition of home caregivers, especially for informal caregiving. Regarding research, she suggested the following: • Identify the full range of human factors stressors for care recipients and informal and formal caregivers. • Identify the extent to which the health and safety of care recipients and of caregivers are linked in order to develop comprehensive solutions for quality care. • Evaluate human factors risks and prioritize interventions. • Identify, develop, implement, and evaluate interventions with the input of care recipients and caregivers, including studies that com- pare home settings with institutional ones. • Fast-track technology options emphasizing usability for care recipi- ents and caregivers.

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2 THE PEOPLE WHO RECEIVE AND PROVIDE HOME HEALTH CARE • Identify effective methods to recruit and retain the home health care workforce. In the area of policy, she suggested the following: • Evaluate federal and state programs that affect home health care and identify the role that human factors play in supporting agen- cies’ programs related to home health care. • Coordinate programs across jurisdictions and settings. • Provide health care services for caregivers as well as care recipients. • Encourage efforts to provide improved social support for informal caregivers. • Preserve and enhance meaningful, dignified, caring relationships. In the areas of education and training, she suggested the following: • Improve the education and training of formal caregivers, including nurses, physicians, other clinicians, paraprofessionals in agencies, and paraprofessionals hired privately. • Improve training for informal caregivers. • Prepare all of society for caregiving, including young people. In the discussion that followed Quinn’s remarks, Humphrey elaborated on the difficulties involved in point-of-care documentation systems. There has been a lack of clinical input into the design and deployment of these technologies, she said. Many decisions are framed by reimbursement poli- cies rather than focusing on the needs of caregivers. From her perspective, the findings of human factors research have not had much of an influence on these systems. For example, the systems are not “smart,” in that they do not cue the user easily, point out things that were missed, or notify the user of conflicts. As a result, other people laboriously need to check a caregiver’s documentation to make sure nothing has been missed. Several presenters described issues involving the coordination of care. Schulz observed that the Department of Veterans Affairs has conducted several experiments to coordinate care but that they have mostly been on a small scale. Milone-Nuzzo pointed out that health care reform could lead to new policies on care coordination and that the National Academies of Practice are preparing a paper on the subject. Humphrey said that the Centers for Medicare & Medicaid Services are also working on the issue and is developing a communication system to be used during transitions in care. Milone-Nuzzo observed that caregivers who are in a home on a day- to-day basis are in the best position to identify threats to a care recipient’s

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28 HUMAN FACTORS IN HOME HEALTH CARE safety. She has been involved in research on smart homes (discussed in Chapter 3), and this research needs to take into account the experiences of direct-care workers, and especially paraprofessionals like home health aides, companions, and homemakers who are in homes for longer periods of time than are nurses, therapists, or dieticians. As part of an exchange on the educational requirements for nurses, Milone-Nuzzo observed that research has demonstrated that health out- comes improve as the education of nurses increases. “I say this in the most kind and gentle way: we need to increase the education [level] of nurses,” she remarked. Humphrey pointed out that other caregiver disciplines, such as physical therapists, are increasing their educational requirements. A lack of attention to both education and certification will have a negative impact on home health care, she said. In response to a question about whether human factors research con- siders the positive aspects of systems, Charness observed that this research looks to optimize not only efficiency and safety but also comfort. Schulz added that there is a positive side to informal family caregiving “in that individuals do report positive benefits.” Quinn reported on a survey with which she has been involved of 1,200 home health care nurses working with AIDS patients, in which a majority responded that they are satisfied with their work. The nurses particularly cited the autonomy of their work and the relationships they formed. “When they can have meaningful ongo- ing relationships, . . . that is the most rewarding to them, and that’s why they are doing it.” Committee chair David Wegman asked whether distinguishing between formal and informal caregivers is the proper frame of reference or whether a distinction between more and less intense levels of involvement may be preferable. Milone-Nuzzo agreed that there is a great deal of overlap between formal and informal caregivers, especially in terms of the rela- tionships that develop, the physical tasks involved, and the use of medical equipment. Yet distinguishing between these two groups does offer a “lens to begin the conversation.” Schulz added that informal caregivers also rely on formal caregivers for various services, creating a back-and-forth dynamic between the two groups. Humphrey pointed to some of the com- plications in the distinction. For example, a home health aide could work for a Medicare-certified agency during the week and for a private-duty agency on the weekends, providing care in different environments to dif- ferent individuals.