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2 People Involved in Health Care in the Home The health care delivery system is rapidly changing, and individuals are assuming an increasing role in management of their own health. In this environment, individuals and their families are expected to perform a range of health care tasks and interact with a vast array of medical devices and technologies in residential settings. However, the population of people who receive and provide care is very diverse and possesses variable skills, resources, knowledge, and experiences. They also differ on a number of other characteristics, such as age, cultural and ethnic backgrounds, educa- tion, and living arrangements. Management of health care at home presents numerous challenges, especially since the characteristics of individuals who engage in health care tasks and interact with health care systems and technologies vary so greatly. Ensuring that health care in the home is safe, efficient, effective, and respon- sive to individual needs requires identifying potential user groups who will be interacting with home health systems; understanding the capabilities/ limitations, needs, and preferences of these populations; and matching these capabilities, needs, and preferences to the demands generated by health care and health management tasks, technologies, and the environments in which these tasks occur. This chapter provides an overview of users—the people who receive and the people who provide health care in the home. We define the broad populations of interest and describe abilities and characteristics of each group relevant to the tasks that they are expected to perform. We begin by broadly defining and briefly describing three groups of 19

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20 HEALTH CARE COMES HOME TABLE 2-1 Types of People Involved in Health Care in the Home Category Examples Care Recipients Infants Children Adults Elders Informal Caregivers Care recipients themselves Immediate family members Extended family members Friends Neighbors Colleagues Other acquaintances Formal Caregivers Home health aides, personal care attendants, social service aides Nurses Physicians Pharmacists Social workers Physical, occupational, vocational, respiratory, speech- language therapists Dieticians individuals who engage in health care in the home: people who receive care (recipients), people who are informal providers of care (informal caregiv- ers), and people who are formal providers of care (formal caregivers) (see Table 2-1). One distinction between informal and formal caregivers is that informal caregivers are typically not paid for the care provided. In addition, formal caregivers are more likely to have health care training, although it is not always specific to the provision of care in the home. We describe abilities and characteristics of people relevant to the performance of health care tasks that are common across all three groups. We also describe circumstances (e.g., living arrangements) and qualifications (e.g., type of certification) that are unique to each group and how they may influence the performance of health care tasks in the home. The overarching goal is to demonstrate how an understanding of the characteristics and abilities of these people is critical to the design of safe and effective systems of health care in the home. RECIPIENTS OF HEALTH CARE IN THE HOME People involved in health care in the home range from young to old and include people who are well and those with a variety of medical con-

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21 PEOPLE INVOLVED IN HEALTH CARE IN THE HOME ditions, disabilities, and impairments. People who receive care vary in as many characteristics as the population at large, including culture/ethnicity, education, and socioeconomic status, as well as in physical abilities, such as strength and stamina, manual dexterity, visual acuity, cognition, health and technology literacy, and level of skill. Almost everyone is involved in some type of health care activity at home. These activities include disease prevention and health maintenance activities (e.g., regular exercise, health information seeking) and manage- ment of acute ailments (e.g., colds, minor infections, injuries) and chronic diseases (e.g., diabetes, multiple sclerosis) and disabilities (e.g., vision, hearing, mobility or cognitive impairment). Everyone has the potential to become a recipient or provider of health care, and these roles can change over time. One large population of people who receive care at home are those with chronic conditions, such as hypertension, asthma, diabetes, cancer, HIV/AIDS, chronic respiratory disease, neuromuscular disease, dementia, or emotional disorders. Currently, about 60 percent of the adult civilian noninstitutionalized population of the United States has at least one chronic condition, and people with chronic conditions incur approximately 75 per- cent of the nation’s health care expenditures (Centers for Disease Control and Prevention, 2009a). The Centers for Disease Control and Prevention (2009a) defines chronic diseases as “noncommunicable illnesses that are prolonged in duration, do not resolve spontaneously, and are rarely cured completely.” The five most costly chronic conditions in 2006 were heart conditions, cancer, trauma-related disorders, mental disorders, and asthma (Soni, 2009). Although chronic conditions may be acquired at any point in the life course (e.g., those resulting from trauma-related injuries), some are more prevalent in various age groups. Examples are children on ventilators; chil- dren with diabetes or asthma who require insulin or inhaler treatments; adults with sleep apnea who use positive airway pressure equipment; people with renal failure who use home dialysis while waiting for or avoiding costly kidney transplantations; and middle-aged or older people with dia- betes, arthritis, cardiovascular conditions, dementia, or AIDS who follow complex medication regimens. The population of people involved in health care in the home also includes persons with physical, sensory/perceptual, cognitive, and emo- tional disabilities. According to the U.S. Census Bureau (Brault, 2008), approximately 49 million people in the United States over 15 years of age have some form of disability. This includes people who have long-lasting conditions that make it difficult to do routine activities, such as seeing, hearing, learning, remembering, walking, climbing stairs, dressing, bath- ing, leaving the home, or working at a job. The likelihood of having a dis-

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22 HEALTH CARE COMES HOME ability and the likelihood the individual will need assistance increase with age, particularly after age 65 (Brault, 2008). Figure 2-1 illustrates how the percentage of people with disabilities increases with age, rising from 10 percent of 15-24-year-olds to 70 percent of those over age 80. As the population ages in coming decades, the number of people with disabilities may increase, although there is some evidence that disability rates may be declining (Freedman et al., 2007). Individuals with disabilities represent a significant population of people who engage in or receive care at home. The population of people with disabilities includes large numbers of veterans who have served in U.S. military forces during conflicts including and since World War II. Approximately 2.6 million veterans were receiving disability compensation benefits in September 2007 (Economic Systems Inc., 2008). The types of disability observed in veteran populations tend to differ from those in the civilian population. Veterans’ disabilities are often musculoskeletal disorders (45 percent) and mental disorders that include posttraumatic stress disorder (15 percent). A high percentage of veterans have multiple disabilities (Economic Systems Inc., 2008), such as co-occurring musculoskeletal and hearing problems. These prevalent types of disability have implications for home health care system design. Health care device manufacturers must design for ease 80 70 60 50 Percentage 40 Any disability Severe disability 30 Needs assistance 20 10 0 <15 15-24 25-44 45-54 55-64 65-69 70-74 75-79 80+ Age Range (years) FIGURE 2-1 Percentage of disability prevalence and needs for assistance by age, Figure 2-1.eps 2005. SOURCE: Brault (2008).

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23 PEOPLE INVOLVED IN HEALTH CARE IN THE HOME of manipulation (e.g., they must permit one-handed operation of devices similar to requirements for keyboard use in Section 508 of the Rehabilita- tion Act) and delivery of instruction through text rather than (or in addition to) voice (Charness, 2010). Similarly, for veteran populations, vision rather than hearing should often be the preferred channel for providing informa- tion about system states and warnings. The large numbers of veterans who experience cognitive problems due to head trauma or to multiple traumas, such as limb amputation coupled with head trauma, must also be recog- nized. These individuals may find it particularly difficult to interact with a variety of technologies and devices. They are also likely to need assistance with routine activities as well as emotional support for many years, given that many acquired these disabilities as young adults. It is important to recognize that disability is associated with health care disparities. Data from the 2006 National Health Interview Survey show that disability and disability coupled with gender were predictive of lack of access to health care. Specifically, people with disabilities were two to three times less likely than those without disabilities to have access to health care. In addition, women with disabilities had less access to health care than either women without disabilities or men with disabilities (Smith, 2008). CAREGIVERS People who provide care to ill or disabled individuals in the home can be broadly categorized as either informal (e.g., family) or formal (e.g., pro- fessional) caregivers. Informal caregivers include individuals providing their own care as well as people who provide health-related assistance to indi- viduals to whom they are related or otherwise associated. Informal caregiv- ers typically do not receive financial compensation for the care they provide and are predominantly relatives, but they may include individuals’ friends, neighbors, or members of volunteer organizations. Informal caregivers are also referred to as family caregivers, lay caregivers, or simply family and friends who provide assistance by virtue of kinship, friendship, or altruism.1 In contrast, formal caregivers (sometimes referred to as professional caregivers2) have often had formal health care training and have some level of service delivery skill and education. However, some formal care- givers who provide care in the home have no formal health care training. Formal caregivers include physicians and physician assistants, nurses, nurse 1 Inplaces where research cited is specifically referring to family members who provide care, the term family caregiver is used. 2 The committee decided to use the term formal caregivers in recognition of the fact that some family members or other informal providers of care are also professionals.

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24 HEALTH CARE COMES HOME practitioners, social workers, physical, occupational and speech therapists, pharmacists, and home health aides. Both informal and formal caregivers are also quite heterogeneous, vary- ing widely in their skills, abilities, and attitudes. CHARACTERISTICS AND ABILITIES The person component of the home-based health care equation is com- plex, and understanding people’s abilities and characteristics is critical to the design and selection of safe, efficient, and effective care devices (Scherer et al., 2007) as well as the overall care system for the home. Performance of health care tasks places a variety of physical, cognitive, sensory/perceptual and emotional demands on people, whether they are caring for themselves BOX 2-1 The Lopez Family Ricardo Lopez, an 82-year-old retired teacher of Cuban descent, takes care of his wife Dolores, who in her mid-70s was diagnosed with Alzheimer’s disease, approximately 7 years ago. The couple lives in a small one-bedroom apartment in Florida, within walking distance of a small local grocery store and pharmacy. Ricardo speaks both English and Spanish, and Dolores used to speak Spanish. Two years ago, she stopped talking and is now only able to make sounds whenever she gets emotional. This is very difficult for Ricardo to deal with, as he feels he has lost the ability to communicate with his wife; he misses her voice and their long talks. Dolores also shows other signs of mental and physical deterioration, and she depends on Ricardo to help her with all activities of daily living, such as feeding herself, bathing, dressing, and getting into and out of the bed or chair. Ricardo is consumed with all aspects of Dolores’s care and often neglects his own personal needs. He does not go to the doctor on a regular basis, because he does not have time or someone to take care of Dolores in his absence. He is in overall good health, but he has to monitor his blood pressure and diet. Ricardo recently accepted the advice of a community social worker to have Dolores attend a day care program three times a week, which gives him some respite. Although getting her ready in the morning is very challenging, he does it because he feels that Dolores needs to be stimulated by engaging in social activities. She was a pianist and enjoys being around people and music.

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25 PEOPLE INVOLVED IN HEALTH CARE IN THE HOME or fulfilling the caregiver role. These demands can vary in complexity and the level of skill required. Health care tasks may also involve some type of equipment or technology, which presents its own set of demands, and may be performed in various environments that generate additional demands. (The family vignette in Box 2-1 illustrates some of this complexity.) Cognitive abilities (e.g., memory, reasoning) and physical and motor functioning (which often decline with age) impact a person’s ability to read and comprehend medication instructions, access medications, com- ply with medication regimens, and use technologies and assistive devices. Physical capabilities affect whether a caregiver can safely assist with such tasks as patient lifting and bathing. Sensory/perceptual capabilities deter- mine whether someone can read the display on a medical device, such as an infusion pump, or hear an alarm, such as on an apnea monitor. Other During the time that Dolores is at day care, Ricardo can go to the grocery store and pharmacy and do household chores. Although he has no formal training, he says, he does his best to keep the house clean. He tries to organize all of his errands and tasks to be done before the weekend, because on Saturday and Sunday he does not have any help. He spends most of that time preparing the week’s meals for Dolores, with the idea that if he keeps her healthy, he can minimize the chances of her being hospitalized. Last summer Dolores was hospitalized for almost a month for prob- lems with her digestive system. This was very stressful for Ricardo, as he had to travel to and from the hospital and often had to stay with Dolores overnight. He is thankful to have the support of friends and some of Dolores’s family members, such as her sisters and a niece. They don’t visit often, but they do send home-cooked meals to help him. Ricardo and Dolores do not have any children together, but Ricardo has a 58-year-old son who was recently hospitalized due to complica- tions with a diabetic ulcer. Ricardo feels guilty that he is unable to visit his son as much as he would like, and he calls him every day to check up on him. Ricardo’s son recently gave him a computer, and Ricardo has learned how to look up information and keep in contact with old friends who live in Spain and Mexico. At night he spends a few hours chatting online and keeping up with the news. For him, this is time he dedicates to himself, and he wishes he could learn more about how to use the computer. SOURCE: Client at the University of Miami Miller School of Medicine.

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26 HEALTH CARE COMES HOME characteristics and abilities, such as education, language/communication proficiency, health status, health literacy, health self-efficacy, knowledge of specific health conditions and treatments, culture, autonomy, social partici- pation, personality, motivation, attitudes/beliefs, and trust are all important to the performance of health care tasks. In addition to the personal capa- bilities mentioned above, relevant attributes also include caregivers’ skill level, technology literacy, attitude toward care recipients, coping ability, and ability to manage their workload. Cognitive abilities influence a person’s ability to process, comprehend, and integrate health information and to decide on and execute the appro- priate response. For some user groups, the complex cognitive demands associated with current health care tasks and equipment/technologies may exceed user capabilities. Normal aging is associated with declines in “fluid abilities such as reasoning, attentional capacity and working memory” (Fisk et al., 2009). However, cognitive declines are possible at all ages as a result of illness, head trauma, the side effects of medication, or the complications of stress, learning disabilities, or developmental disabilities. In addition, cognitive abilities may wax and wane over time due to the effects of fatigue, pain, drugs, or disease progression. Care recipients (and even caregivers to the extent that fatigue and their own health challenges affect them) can be competent at times and impaired at others. Physical impairments may affect mobility and gross motor movements, such as shifting the body from one posture or location to another, and declines in strength and stamina are common among people with dimin- ished health. Limitations in manual dexterity may affect a person’s ability to operate controls on equipment or open medication containers. Older adults often have slower walking speeds, and they may experience negative changes to the vestibular system that make balance less stable, increasing the risk of injury when caring for themselves (e.g., dressing, walking on uneven surfaces) or caring for others (e.g., helping a spouse move onto or off a bed or toilet) (Charness, 2010). Aging is often accompanied by decreases in ability to execute precise movements, which may make it dif- ficult for older people to use small controls or use input devices, such as a keyboard, mouse, or touch screen. Chronic conditions, such as arthritis, may affect one’s ability to execute movements precisely, operate controls, open containers, or grasp objects. These limitations are even more pro- nounced for people who have limb tremor or movement initiation disorders (e.g., Parkinson’s disease). Sensory/perceptual skills, critical to many tasks, are limited in many people. Recent data from the National Health Interview Survey indicate that, among adults ages 18 and older, about 15 percent have hearing impairments, 11 percent have some type of visual impairment, and 3.3 per- cent have combined vision and hearing impairments (U.S. Department of

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27 PEOPLE INVOLVED IN HEALTH CARE IN THE HOME Percentage FIGURE 2-2 The prevalence of sensory impairments among people ages 70 and over, United States, 1999-2006.Figure 2-2.eps SOURCE: Dillon et al. (2010). with 1 vector label bitmap low resolution Health and Human Services, 2009). These impairments, as well as addi- tional impairments in balance and loss of feeling in feet, are more prevalent in older adults age 70 and over (see Figure 2-2). Declines in sensory abilities such as vision may make it difficult for people to read labels on medication containers or on controls of devices, and auditory declines may make alarm sensing and communication problematic. Language and communications skills can have a profound impact on ability to access and implement care requirements and live independently at home. For many reasons, including the rise in non-English speakers,3 many people may not easily express themselves well, comprehend com- plex instructions, or be able to use a health care device when provided with written instructions. It is estimated that 93 million U.S. adults have English literacy skills that are categorized as “basic” and “below basic.” Rates of low literacy are higher among populations of lower socioeconomic status, older adults, and minorities (Kutner et al., 2006). Furthermore, for significant numbers of Americans, English language–only health care materials are inadequate. People with mental health problems are prone to 3 Data from the 2000 U.S. census indicate that nearly 47 million people—or about 1 in 5 U.S. residents ages 5 and older—regularly speak a foreign language at home, representing an increase of 15 million people since 1990.

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28 HEALTH CARE COMES HOME communication and language deficits, since, as a result of their conditions, they may have difficulties with memory, understanding, reasoning, talking, swallowing, and/or may have altered social skills and reduced nonverbal skills. Whether barriers such as weak language or cognitive skills can be surmounted by instructional materials that make greater use of symbols, diagrams, or video is not yet well understood (e.g., Morrell and Park, 1993). The average age of the U.S. population is increasing because of rela- tively low birth rates coupled with declining death rates. Population projec- tions indicate that by 2020, there will be an estimated 55 million people ages 65 and older and 6.6 million people ages 85 and older (Administration on Aging, 2009). Older adults are more likely to have some type of disability. In addi- tion, older adults experience increased activity limitations as they age as a result of chronic health conditions (see Figure 2-3). The older population is predominantly female (although this phenomenon is expected to be less 30 Senility or dementia Lung Diabetes 25 Vision Hearing Heart or other circulatory 20 Arthritis or other musculoskeletal Percentage 15 10 5 0 65-74 75-84 85+ Age Range (years) FIGURE 2-3 Older adults with limitations in activities. Figure 2-3.eps SOURCE: Centers for Disease Control and Prevention (2009b).

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29 PEOPLE INVOLVED IN HEALTH CARE IN THE HOME pronounced in the future), and many of these women are likely to live alone.4 Older adults as a whole have low health literacy, and the current cohort of elders is less likely to be familiar with computers and the Internet (Jones and Fox, 2009). Generally, older adults are less comfortable about adopting new technologies than are younger adults and have lower com- puter self-efficacy and less comfort with computers than other age groups (Nair, Lee, and Czaja, 2005; Czaja et al., 2006). Educational achievement has increased over the past 70 years in the United States. The percentage of the population ages 25 and older that has completed 4 years of high school has risen from less than 40 percent in 1940 to nearly 90 percent in 2003. The proportion of the population that has completed 4 or more years of college has increased sixfold from 5 to over 30 percent (Stoops, 2004). Higher educational attainment is generally associated with higher income, better health, and greater longevity. These educational increases bode well for the ability of future generations to cope with complex health care regimens and equipment. However, it is important to recognize that educational disparities exist in all age groups. Attitudinal variables also affect a person’s performance of health care tasks. General attitudes toward health and health care have a strong influence on willingness to seek care and adherence to treatment proto- cols. Beliefs in one’s ability to successfully carry out health care protocols and beliefs about the effectiveness of these protocols have a strong impact on treatment adherence and willingness to adopt behavioral changes. Trust is another important consideration. In today’s world, this includes trust that one will have access to needed care, trust in caregivers, and trust in health care technologies. The distinction between distrust and overtrust should be recognized. Distrust, which can evolve from a number of attitudes includ- ing lack of confidence in knowledge or skills or concerns about privacy, can lead to the rejection of advice, use of an aid, or piece of technology. Conversely, overtrust can lead to complacency and failure to question or recognize malfunctions or misreadings under the presumption that equip- ment is working properly. Ethnicity/Culture Marked changes in the ethnic composition of the United States have occurred and are expected to continue over the coming decades. Overall, the Hispanic population is expected to double in size from 2000 to 2050, and the Asian population is projected to increase by 79 percent. Other ethnic minority groups, such as blacks and American Indians, will also 4 In 2005, among people ages 85 and older, only 15 percent of women but 57 percent of men lived with their spouse (U.S. Census Bureau, 2007).

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50 HEALTH CARE COMES HOME Given extensive autonomy and independence, it is paradoxical that health professionals who practice in the home often struggle with a lack of professional identity (Humphrey and Milone-Nuzzo, 2009). Unlike their colleagues in other settings, most professionals who practice in the home do not have active professional organizations. Few professional organizations impose certification exams or standards for employment that are specific to the home environment. For health care professionals in other settings, pro- fessional organizations serve as a mechanism for career development and advancement, along with commensurate salary increases. These benefits are largely unavailable for professionals working in the home environment. Lack of formal credentialing, in combination with logistical challenges associated with supervision in the home, raises the potential for quality of care to be compromised. Occupational Hazards The home is, in many ways, more challenging as a workplace than formal ambulatory or institutional health care environments designed and constructed for health care delivery. The physical environment is much more varied and may include logistical or physical impediments, and even hazards, for the administration of health care. Health professionals may encounter distractions, hazardous household conditions, physical discom- fort from carrying equipment, heavy lifting, travel requirements, and even violence in neighborhoods and homes (Markkanen et al., 2007). Although environmental issues are broadly relevant to everyone involved in health care in the home (and are discussed in detail in Chapter 6), several issues are unique to health care professionals. Health care profes- sionals who practice in the home are more susceptible to a range of injuries and hazards because, unlike medical facilities, the home environment is more variable and generally not designed for the delivery of health care services. For example, although such tasks as lifting, pushing, and pulling are often performed by health care professionals, in the home they have less human assistance, usually no ergonomically designed equipment, and the environment is typically less appropriate (e.g., small spaces, crowded rooms) than in institutional health care facilities. Consequently, tasks may be performed in awkward positions or involve more strain and exertion— and may thereby result in injury. Formal caregivers whose jobs involve substantial time on personal care tasks, such as transferring, bathing, and dressing, have been found to incur among the highest rates of musculo- skeletal injuries (Orr, 1997; Pohjonen, Punakallio, and Louhevaara, 1998; Galinsky, Waters, and Malit, 2001). Health care professionals who practice in the home work primarily out of their cars or use public transportation and have no formal work-

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51 PEOPLE INVOLVED IN HEALTH CARE IN THE HOME station (Markkanen et al., 2007). Most agencies provide “trunk kits” to professional staff that include extra supplies, protective equipment, and other items in order to reduce the need to return to the office to retrieve something necessary to complete an expected or unexpected visit. Because they repeatedly get into and out of the car (or other vehicle), often carry- ing equipment and supplies, these individuals are at risk for discomfort in and injury to the neck, lower back, shoulders, and hips (Sitzman, Pett, and Bloswick, 2002; Askew and Walker, 2008). The average home health care bag was found to weigh approximately 20 pounds in one study (Lee et al., 2006). Another study found that 60 percent of home care nurses experience discomfort from transporting their nursing bag (Sitzman, 2005). In addition to their bags, health professionals often must transport medical devices and technologies and various supplies, as well as paperwork, teaching materials, references such as a drug compendium, and anything else needed for an efficient and effective visit. Although these professionals are encouraged to complete all documentation in the home during the visit, this is not always possible and can necessitate writing, making phone calls, and using other technology in the uncomfortable conditions of an automobile. Occupational hazards associated with provision of health care in the home extend well beyond physical stresses. For example, a report by the National Institute for Occupational Safety and Health details a broad range of issues that may be encountered in the delivery of health care in the home. In addition to musculoskeletal disorders, caregivers are exposed to blood- borne pathogens and needlestick injuries, various chemicals, unsanitary environments, violence and firearms, animals, weather-related hazards such as ice-covered sidewalks, and vehicular injuries related to long commutes to the worksite (Centers for Disease Control and Prevention, 2010). COMMUNICATION BETWEEN FORMAL AND INFORMAL CAREGIVERS The ability of professional caregivers to engage with family members, understand their strengths, respect their cultural norms and values, and foster their competence as informal caregivers is a critical dimension of practice. Because the typical home health care visit is one hour or less (Madigan, 2007), it is incumbent upon home health care professionals to be skilled at preparing family members to function effectively in their absence. Teaching is such an important aspect of providing home care that Medicare considers teaching as a skilled service—one that can be done only by a licensed health care professional. Despite the practical importance of establishing a productive partnership with care recipients and their informal caregivers, most formal caregivers are exposed to limited, if any, formal educational curriculum addressing effective strategies to include families in

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52 HEALTH CARE COMES HOME health decision making, prepare them to facilitate use of medical or adap- tive technologies, or evaluate and support family caregivers’ needs related to care provision (Reinhard et al., 2008; Yaffe and Jacobs, 2008). The partnership between care recipients, families, and health care pro- viders is not always positive. For example, family members of hospitalized patients often receive insufficient information and perceive lack of respect from hospital-based health professionals (Azoulay et al., 2000; Heyland et al., 2002; Teno et al., 2004). One study of home health care recipients found that communication between clinicians and informal caregivers was not adequate around the discharge process (the termination of home health services). Nearly 40 percent of these informal caregivers reported learning that the home care services would end around the time of the last visit by the formal care- giver (Levine et al., 2006). This gave the family no time to prepare for the transition. Cultural competence is important, as professional caregivers and care recipients are often from different backgrounds and may differ in expecta- tions and preferences. The health care professional must respect, acknowl- edge, and address care recipients’ and families’ preferences and beliefs so as to effectively garner their support in adhering to their treatments (Lowe and Archibald, 2009; Teal and Street, 2009). An exemplary effort to further best practices for health care profes- sionals to support informal caregivers is a partnership—funded by the John A. Hartford Foundation and the Jacob and Valeria Langeloth Foundation, among the AARP Foundation, the American Journal of Nursing, the Council on Social Work Education, the Family Caregiver Alliance, and the Rutgers Center for State Health Policy—to advance competencies in this area spe- cifically for nurses and social workers (Kelly, Reinhard, and Brooks-Danso, 2008). The effort outlines nursing and social work–specific competencies in six domains: (1) cultural competence and appreciation for diversity in people’s attitudes and values; (2) communication—respect and compassion for both care recipients and their family caregivers; (3) assessment of family knowledge, skills, and needs; (4) intervention planning and implementa- tion; (5) education; and (6) interdisciplinary teamwork (Damron-Rodriguez, 2008). This model could serve for other professional groups, including direct-care workers, physicians, and pharmacists. Communication is important between caregivers in the home and primary care providers. Caregivers would like to have more regular com- munication with the care recipient’s primary care provider (Fairchild et al., 2002). Given the complex health conditions of many people receiving health care in the home, coordination of health care services across settings and providers of care is important (Bodenheimer, 2008). Such coordination may be possible with developments in communications systems, medical

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53 PEOPLE INVOLVED IN HEALTH CARE IN THE HOME technologies, and training. As we detail in the next chapters, human factors can play an increasingly important role in ensuring that systems, technolo- gies, and training are all accessible to and usable by diverse populations. REFERENCES Abendroth, M., and Flannery, J. (2006). Predicting the risk of compassion fatigue: A study of hospice nurses. Journal of Hospice and Palliative Nursing, 8(6), 346-356. Administration on Aging. (2009). A profile of older Americans. Available: http://www.aoa. gov/AoARoot/Aging_Statistics/Profile/2009/2.aspx [July 2010]. Andrews, M. (2010, September 13). House calls ready to go national. Los Angeles Times. Available: http://articles.latimes.com/2010/sep/13/health/la-he-house-calls-20100913 [April 2011]. Anthony, A., and Milone-Nuzzo, P. (2005). Factors attracting and keeping nurses in home care. Home Healthcare Nurse, 23(6), 372-377. Askew, R., and Walker, J.T. (2008). Ergonomics for home care providers. Home Healthcare Nurse, 26(7), 412-417. Azoulay, E., Chevret, S., Leleu G., Pochard, F., Barboteu, M., Adrie, C., Canoui, P., Le Gall, J.R., and Schlemmer, B. (2000). Half the families of intensive care unit patients experi- experi- ence inadequate communication with physicians. Critical Care Medicine, 28, 3044-3049. Baker, D.W., Gazmararian, J.A., Williams, M.V., Scott, T., Parker, R.M., Green, D., Ren, J., and Peel, J. (2002). Functional health literacy and the risk of hospital admission among Medicare managed care enrollees. American Journal of Public Health, 92, 1278-1283. Beach, S.R., Schulz, R., Williamson, G.M., Miller, L.S., Weiner, M.F., and Lance, C.E. (2005). Risk factors for potentially harmful informal caregiver behavior. Journal of the American Geriatrics Society, 53(2), 255-261. Belle, S.H., Burgio, L., Burns, R., et al. (2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: A randomized, controlled trial. Annals of Internal Medicine, 145(10), 727-738. Bodenheimer T. (2008). Coordinating care: A perilous journey through the health care system. New England Journal of Medicine, 358, 1064-1071. Brault, M.W. (2008). Americans with disabilities: 2005 household economic reports, current population reports. Washington, DC: U.S. Census Bureau. Available: http://www.census. gov/prod/2008pubs/p70-117.pdf [April 2011]. Brooten, D., Kumar, S., Brown, L., et al. (1986). A randomized clinical trial of early discharge and home follow-up of very low birthweight infants. New England Journal of Medicine, 315, 934-939. Brooten, D., Youngblut, J.M., Brown, L., et al. (2001). A randomized trial of nurse specialist home care for women with high risk pregnancies: Outcomes and costs. American Journal of Managed Care, 7, 793-803. Brooten, D., Naylor, M.D., York, R., et al. (2002). Lessons learned from testing the quality cost model of advanced practice nursing (APN) transitional care. Journal of Nursing Scholarship, 334, 369-375. Bureau of Labor Statistics. (2007). Nonfatal occupational injuries and illnesses requiring days away from work. Washington, DC: Author. Bureau of Labor Statistics. (2010a). May 2009 national occupational employment and wage estimates United States, 2010. Available: http://www.bls.gov/oes/current/oes_nat.htm [March 31, 2011]. Bureau of Labor Statistics. (2010b). Occupational handbook, 2010-2011 edition. Available: http://www.bls.gov/oco [March 31, 2011].

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57 PEOPLE INVOLVED IN HEALTH CARE IN THE HOME Montgomery, R.J.V., Holley, L., Deichert, J., and Kosloski, K. (2005). A profile of home care workers from the 2000 census: How it changes what we know. Gerontologist, 45(5), 593-600. Morrell, R.W., and Park, D.C. (1993). The effects of age, illustrations, and task variables on the performance of procedural assembly tasks. Psychology and Aging, 8(3), 389-399. Nair, S.N., Lee, C.C., and Czaja, S.J. (2005). Older adults and attitudes towards computers: Have they changed with recent advances in technology? Proceedings of the 49th Annual Meeting of the Human Factors and Ergonomics Society (pp. 154-157), Orlando, FL. National Alliance for Caregiving and American Association of Retired Persons. (2004). Care- giving in the U.S. 2004. Washington, DC: Author. National Alliance for Caregiving and American Association of Retired Persons. (2009). Caregiving in the U.S. 2009. Available: http://www.caregiving.org/data/Caregiving_in_ the_US_2009_full_report.pdf [March 31, 2011]. National Family Caregivers Association and Family Caregiver Alliance. (2006). Prevalence, hours and economic value of family caregiving, updated state-by-state analysis of 2004 national estimates. Kensington, MD: Author. Naylor, M.D., Brooten, D., Campbell, R., Jacobsen, B.S., Mezey, M.D., Pauly, M.V., and Schwartz, J.S. (1999). Comprehensive discharge planning and home follow-up of hospi- talized elders. Journal of the American Medical Association, 281(7), 613. Newsom, J.T., and Schulz, R. (1998). Caregiving from the recipient’s perspective: Negative reactions to being helped. Health Psychology, 17(2), 172-181. Orr, G.B. (1997). Ergonomics programs for health care organizations. Occupational Medicine, 12(4), 687-700. Ortman, J., and Guarneri, C. (2009). United States population projections: 2000 to 2050. Washington, DC: U.S. Census Bureau. Available: http://www.census.gov/population/ www/projections/analytical-document09.pdf. Paraprofessional Healthcare Institute. (2005). Role of training in improving recruitment and retention of direct care workers in long-term care. Bronx, NY: Author. Paraprofessional Healthcare Institute. (2010). Direct-care workers at a glance. Available: http://phinational.org/policy/about-the-workforce/at-a-glance/ [March 31, 2011]. Parsons, S.K., Simmons, W.P., Penn, K., and Furlough, M. (2003). Determinants of satisfac- tion and turnover among nursing assistants. The results of a statewide survey. Journal of Gerontological Nursing, 29(3), 51-58. Pinquart, M., and Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology & Aging, 18(2), 250-267. Pinquart, M., and Sörensen, S. (2007). Correlates of physical health of informal caregivers: A meta-analysis. Journals of Gerontology Series B: Psychological Sciences & Social Sci- ences, 62B(2), 126-137. Pohjonen, T., Punakallio, A., and Louhevaara, V. (1998). Participatory ergonomics for reduc- ing load and strain in home care work. International Journal of Industrial Ergonomics, 21, 345-352. Reinhard, S., Brooks-Danso, A., Kelly, K., and Mason, D.J. (2008). How are you doing? American Journal of Nursing, 108(9 Suppl), 4-5. Riggs, J.A. (2003-2004). A family caregiver policy agenda for the twenty-first century. Gen- erations, 27(4), 68-73. Roth, D.L., Perkins, M., Wadley, V.G., Temple, E.M., and Haley, W.E. (2009). Family caregiv- ing and emotional strain: Associations with quality of life in a large national sample of middle-aged and older adults. Quality of Life Research, 18(6), 679-688.

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