advancing research in transitional Care: Challenges ...

Literature Review

Advancing Research in Transitional Care: Challenges of Culture, Language and Health Literacy in Asian American and Native Hawaiian Elders Christy Nishita, PhD Colette Browne, DrPH Abstract: Recent federal policy supports an individual’s preference for home and communitybased long-term care, even among nursing home residents. Optimizing transitions from the nursing home to home is a complex undertaking that requires addressing the interrelationships between health literacy and cultural-linguistic factors in the nation’s increasingly diverse older adult population. We look at four Asian American and Pacific Islander elder populations to illustrate that differing health profiles and cultural-linguistic values can affect the type of care and support needed and preferred. A research gap exists that links these factors together for optimal transitional care. The paper presents a conceptual framework and proposes a six-point research agenda that includes family assessments of health literacy abilities, exploring the relationship between culture, health, and decision-making, and the development/adaptation of transition planning tools. Key words: Culture, transitional care, health literacy, aging, Asian American, Native Hawaiian.

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he need to understand the role of health literacy and cultural linguistic challenges in health care is compelling given the nation’s shifting demographic profile in age, ethnicity, and culture. In the United States, older adults are the primary consumers of health care and long-term care services. Together with their families, they are increasingly called upon to make crucial decisions regarding their long-term care arrangements. In hospitals and long-term care nursing facilities, many residents and their families prefer moving to a home or other community-based long-term care setting for their later years.1 This is a complex and often overwhelming decision, and there is limited knowledge on the demands for health literacy skills, including print, oral, and numeracy skills that are required during the transitional care process. We begin with a broad review of our increasingly multicultural society, current long-term care policy directions that support transitions from institutional settings, and evidencebased models in transitional care. Research has yet to focus on how cultural, linguistic, and health literacy factors influence transitional care planning. We profile three Asian

Christy Nishita is a Researcher and Colette Browne is Professor in the University of Hawaii School of Social Work and the Interim Director of the Center on Aging at the University of Hawaii. Please address correspondence to Christy Nishita at University of Hawaii, Center on Aging, 1800 East West Road, Henke Hall 226, Honolulu, Hawai‘i 96822; (808) 352.9777; [email protected]. © Meharry Medical College

Journal of Health Care for the Poor and Underserved 24 (2013): 404–418.

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American (Chinese, Japanese, Filipino) and one Pacific Islander (Native Hawaiian) elder population to illustrate that health profiles and cultural values can influence care needs and preferences. We conclude with suggestions for a future research agenda to investigate relationships between culture, language, and health literacy as they affect health outcomes and transitional care. America’s multicultural aging population. The ethnic and racial diversity of the U.S. is reflected in its older population. In 2050, the nation’s population aged 65 and older will grow to 81 million (up from 37 million in 2005) and 42% will be from racial and ethnic minority groups.2 Racial and ethnic disparities in health have been well described, with data showing that minority Americans suffer disproportionately from a number of ailments and diseases as well as a low health care utilization rate.3 Differences in disease rates, morbidity and mortality patterns, and medication compliance require more study to identify and understand the root causes of these and other problems. Health care providers may contribute to such disparities because of bias, stereotyping, prejudice, and clinical uncertainty.4 Health care systems must become able to identify, understand, and accommodate increasingly diverse populations to assure effectiveness, quality of care, and equity.5 Health reform and long-term care directions. Recent federal health reform initiatives support older adults’ transition from the nursing home to home6 and they do so with chronic, long-term care needs. The Olmstead Decision,7 Money Follows the Person Demonstration projects, and the Community First Choice Option contained in the Affordable Care Act represent a shift in federal policy toward supporting individual rights for home and community-based long-term care. As a group, older adults prefer to remain in their own homes,8 and those who reside in institutional settings would often strongly prefer to return home. Nationally, in the Minimum Dataset 2.0 (a standardized assessment given to all nursing home residents), over 300,000 nursing home residents report a preference to return to the community.9 In 2005, there were an estimated 16,000 certified nursing homes with approximately 1.7 million beds and 1.4 million residents on any given day. These facilities discharged roughly 2.8 million residents over the course of the year.6 Transitional care models. Data are limited on what makes the transition across care settings (whether it is between hospital, nursing facility, or home) optimal. However, a growing body of research has studied the transition from hospital to home, documenting family breakdowns (e.g., conflict, caregiver burden), high rehospitalizations, and low satisfaction with care as just some of the consequences of poor transition planning.10 A growing number of evidence-based transitional care models provide comprehensive in-hospital planning and home follow-up interventions for patients upon discharge.11,12 The Transitional Care Model is an efficacious care delivery model that outlines steps in a comprehensive in-hospital planning and home follow-up process to ensure for highrisk, chronically ill older adults.13 Another evidence-based model, the Care Transitions Model,14 has also been tested in the transition from hospital to home. It is unknown whether this valuable work translates to the needs of nursing home residents. Naylor has argued for this model to be applied to other settings and types of transitions.15 The nursing home faces a number of challenges in ensuring an optimal home placement. In contrast to acute care hospitals, they often have more limited staff and resources,

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Race/ethnic diversity and transitional care

leaving older adults and families with fewer potential resources. Transitions from the nursing home are also likely to involve the coordination of social service agencies to provide long-term care each with their own eligibility, funding requirements and resources, geographic areas, and availability. The coordination of these services are often challenging because medical providers and social service agencies have limited understanding of each other’s roles and processes.16 As the elder population and their families grow increasingly ethnically and culturally diverse, transitional care models will also have to be sensitive and accommodate cultural-linguistic and health literacy factors, preferences, and challenges. Age, culture, language, and health literacy. Healthy People 2010 defines health literacy as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate decisions. Although low health literacy may be found in all populations, those groups most at-risk include the elderly, ethnic minority, immigrant, low-income, and those with chronic mental and/or physical issues.17 Unfortunately, this is the group that has the greatest need for health care and clear health care information but the least ability to read, comprehend, and use information needed for optimal well-being.18 Two instruments have been used frequently in health literacy interventions that focus on assessment of reading and numeracy skills. The Test of Functional Health Literacy in Adults (TOFHLA) assesses how well patients not only comprehend, but also act or function in health care situations. The test includes an assessment of both reading comprehension and numeracy comprehension. The original TOFHLA, while comprehensive, can be time consuming to both administer and score; therefore, a shortened version of this test was developed and is now available.19 The TOFLA has been used in complex health literacy interventions targeting adults with heart failure20 and type 2 diabetes21 as well as older adults (aged 65 and older) with chronic disease.22 Second, the Rapid Estimate of Adult Literacy in Medicine (REALM) screening instrument is a word recognition test commonly used in health care settings.23 The tool contains 22 common medical terms for body parts and illnesses that are arranged in order of difficulty. Patients are asked to pronounce each word in the list. The REALM has been employed in a colorectal cancer screening study for male veterans (aged 50 years and older),24 an intervention for adults with type 2 diabetes,25 and a large-sample cross-sectional study on older adults and health disparities.26 Although these tests can be very helpful, they have limited usefulness in measuring functional literacy in the health care setting and in the transitions of care that are common in long-term care. Limited research has focused on health literacy and long-term care issues in aging, and even less on cultural, linguistic, and health literacy issues and factors among older adults. A slow but consistent increase in the numbers of studies on aging and health literacy have begun and are now focusing on specific health issues (e.g., Alzheimer’s disease, heart disease and stroke, and the role of technology as a strategy for promoting health literacy).27 Researchers are also examining the ways that cultural and linguistic factors may shape health literacy abilities, decision-making, health disparities, and health outcomes.28,29,30 An improved understanding of cultural beliefs and attitudes can improve practitioners’ responsiveness and interaction with patients and will translate to better health care.5 Culture and language have been found to contribute to low health

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literacy4,31,32 and to variations in the contextual definitions of disease, disability, and preferred treatments.33 Other researchers note that culture and linguistic literacy, while potentially linked to low literacy, are distinct, each requiring its own assessments and interventions.34 There is still less study on cultural and linguistic factors and health literacy in the older population, with the result that we have yet to develop a conceptual framework linking aging, health literacy, culture, and language. Here we argue for a more critical understanding of an older adult and family’s culture and care preferences, health literacy, and subsequent comprehension of care is critical in ensuring and promoting capacity for decision-making and engagement in optimal transitional care planning. Nursing home residents returning home face complicated health literacy challenges and decisions regarding who will provide care, where this care will be provided, and how it will be paid for. Families find it difficult to understand the meaning and difference between long-term care supports (e.g., home health aide, day care and day health programs, foster homes, assisted living) and funding sources (e.g., Medicare, Medicaid) in order to make a complex, often overwhelming decision. A health literacy measure must be adapted to employ in health care situations common to the older adult population, particularly transitional care and long-term care. Although such difficulties may be universal, we focus here on Asian American (AA) and Native Hawaiian and Other Pacific Island (NHOPI) elders. These populations are growing at a rate that exceeds all other populations, and they remain some of the most unstudied U.S. populations.35 For these and other reasons discussed below, AA and NHOPI elders are important targets in researching the influence of culture on transitional care. Importance of examining transitional long-term care in AA and NHOPI elders. A lack of information on the role of culture in transitional care is critical for Asian American (AA) and NHOPI older adults. One major reason is the rapid increase nationally of these populations, with the Asian population increasing by 43% and Native Hawaiians and other Pacific Islanders increasing by 35% from 2000 to 2010.36 Second, there are wide social and health disparities within AA and NHOPI elder populations. Some Asian Americans, notably Chinese and Japanese elders, have the highest life expectancy (85.8 years) of any ethnic group in the United States.37 Notwithstanding these longevity figures, a number of negative factors threaten their health including language and cultural barriers. In contrast, NHOPI elder populations have some of the shortest life expectancies in the nation and some of the earliest disability rates, a result of numerous factors including lack of access to health care and health information.38 Third, cultural values prevalent in many AA and NHOPI populations emphasize a family-centeredness, respect the role of elders in the family, and a preference for culturally-informed services and programs.39,40 Taken together, these trends and distinct health profiles suggest that more AA and NHOPI elders will be transitioning home with cultural linguistic and health literacy challenges that will affect their transition’s success. A focus on Hawaii’s AA and NHOPI population. Hawaii, the nation’s 50th state, is also its most ethnically and culturally diverse. The state’s population comprises 39% Asians, 10% Native Hawaiians and other Pacific Islanders, and 24% who are mixed (two or more races).41 Its multi-cultural older adult population creates additional demands among health care providers that will be faced by providers in other states in the very near future. Compared with the United States as a whole, Hawaii has a much higher

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percentage of Asian American older adults (58% vs. 3.4%) and NHOPI older adults (5.5% vs. 0.1%) and a smaller percentage of White (26% vs. 80%) and Black (0.4% vs. 8.4%) older adults (U.S. Census, 2011).36,41 Immigration plays a key role in the numbers of Asian Americans in the U.S. In Hawaii, there are fewer native-born (77.2% vs. 89.9%) and more foreign-born (22.8% vs. 10.1%) older adults than in the continental U.S.42 In this section, we provide a brief review of the health profile, health status, and cultural values of four major AA and NHOPI ethnic groups in Hawaii: Chinese, Filipino, Japanese, and Native Hawaiian older adults. The health profile, socio-economic factors and health literacy levels, and cultural preferences of each ethnic group has implications for the health care system as a whole and in particular, health care professionals working in transitional care. In Figure 1, we present these concepts and their interrelationships. In this figure, we note that four factors influence the transitional care planning process. First, health in late life can determine the types of care and long-term care supports needed. Second, social supports refers to the availability and quality of help from family and other informal caregivers to older adults. Third, individual characteristics that cannot be modified, including one’s race/ethnicity influences one’s cultural preferences for types of care and its methods of delivery. Like other researchers, we believe it is important to note that cultural values are neither fixed nor one dimensional, and are instead themselves influenced by age, gender, level of acculturation and/or colonization, and other variables.43,44 As Mui and Shibusawa40 suggest, when working with Asian

Individual Characteristics –Race/Ethnicity –Age –Gender Family and Social Supports Health Conditions in Late Life

Cultural Norms and Preferences

Opportunities Over Life Course

Education

Income/Poverty

Health Literacy Skills

Numeracy Skills Oral Skills

Context: Transitional Care Planning

Print Skills

Transitional Care Experience/Outcomes

Figure 1. Interrelationships between culture, health literacy, and transitional care.

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elders, it is key not only to assess the extent to which values guide behaviors but also to understand the specific characteristics of the values the elders deem important. Finally, opportunities for education and income levels in adulthood have a strong association with health literacy levels. A low health literacy level can limit one’s participation in the transition planning process, which may demand the reading and completion of forms, medication dosages and dispensing information, and oral discharge instructions. Figure 1 represents an initial step toward exploring the complex interrelationships that impact the transitional care process. The discussion that follows of the four racial/ethnic groups in Hawaii illustrates the health, health literacy, socio-economic, and cultural factors that can influence long-term care preferences and transitional care. Chinese Americans. Numbering approximately 3.6 million, Americans of Chinese descent are the largest subgroup of Asian Americans and the second largest group of immigrants to the U.S.40 In Hawaii, 23% of the older adult population (60 years old or older) is Chinese and their life expectancy at birth is 86.1 years.45 Years of productive life lost, an indicator of premature mortality before age 70, is lowest among Chinese (1.3 years) in comparison to White, Filipino, Japanese, and Native Hawaiian elders in Hawaii.45 Thus, Chinese in Hawaii have relatively healthy, long lives, which may influence their plans and choices in the transitional care process. Socio-economically, it was estimated* that 66% of Chinese in Hawaii completed more than a high school education, 23% lived below or near poverty, and 21% had a low health literacy level. The latter was based on a self-reported item, “How confident are you filling out medical forms by yourself?”46 These data suggest that a proportion of Chinese in Hawaii (21%) have poor health literacy and may need support in the transition planning process. Confucianism has influenced a number of cultural values and beliefs; among them, the importance of the family, harmony, deference to authority, and filial piety (xiao). The latter is often the specific obligation of the son to care for aging parents. Li—the proper way—dictates emotional restraint with strangers and the importance of face—the avoidance of shame to oneself or one’s family. The concept of ying/yang—the general laws of opposing forces—suggests that illness can result in an inbalance from these forces. Non-Western health practices are often employed and health problems may be ignored so as to not bring shame to the family.47 These values suggest that in familistic cultures, families need to play a key role in the transition planning process. In order to avoid feelings of shame, transitional care plans need to maximize dignity and independence in long-term care arrangements. Filipino Americans. Filipino elders who reside in the United States increased from 1.4 million in 1990 to 3.09 million in 2008, more than doubling in numbers.48 In Hawaii, Filipinos (14.7%) are the third largest racial/ethnic groups. Older Filipinos in Hawaii have a life expectancy of 80.9 years in 2000. In comparison to Whites, Hawaiians, and Japanese, Filipinos have the highest rates of hypertension and high cholesterol.45 These health conditions may influence the transition planning process and the types of care needed. To provide a socio-economic context for Filipinos in Hawaii, 57% of adults

* In the 2008 Hawaii Health Survey, Chinese lacked a sufficient sample size to be analyzed independently. Chinese were included in an Other Asian/Pacific Islander Group, of which 80% were Chinese.

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completed more than high school, 59% lived at or near poverty, and 24% had a low health literacy level.49 The economic situation among Filipinos in Hawaii may influence the long-term care options available to elders. Studies have found that, like other recent immigrant groups, families work two and three jobs, and it is this work profile that presents barriers to families’ abilities to care for an elder who is moving home.50 The literature on Filipino Americans is consistent in descriptions of its cultural value—utang na loob (reciprocal obligation), hiya (shame), amor propio (self esteem) and pakikisama (getting along with others). Pakikisama ensures that relationships will run smoothly, even at the expense of self, and conflict is strongly discouraged. This can contribute to a reluctance to seek extended family support in difficult caregiving situations, and even greater reluctance to seek formal services from people regarded as strangers. These factors may complicate transitional care plans that include formal sources of care. In addition, although Catholicism plays a key role in many Filipino American lives, at least one study found families reluctant to use church-related elder services, stating churches “had their own problems.”51 Japanese Americans. The 2000 Census identified nearly 800,000 U.S. residents to be of Japanese descent, with about 52% residing in California and 41% in Hawaii. Japanese Americans have the longest life expectancy in the United States, longer than their counterparts in Japan. In 2000, Japanese in Hawaii had a life expectancy of 82.8 years.45 They have the lowest rates of asthma and heart attack but the highest rate of high cholesterol in comparison to other major ethnic groups in Hawaii (White, Filipino, and Hawaiian).45 Their health profile can influence health care utilization and transition planning needs in late life. Socio-economically, 72% of adults (18 years and older) completed more than high school, 17% lived below or near poverty, and 14% had low health literacy levels.46 Relatively few Japanese have health literacy challenges, indicating that the majority of Japanese may successfully participate in the transition planning process. From a cultural perspective, all immigrant groups can face challenges and difficulties but historically Japanese Americans endured a specific trauma in the relocation camps during World War II. Culturally (like Chinese Americans) many of their values are influenced by Confucianism. The Japanese concept of filial piety stresses the importance of ancestors and filial obligations to family eldercare, which may result in the family taking a prominent caregiving role post-transition from the nursing home. Native Hawaiians. In contrast to these groups who immigrated to the United States, Native Hawaiians (kanaka maoli) are the indigenous people of the islands of Hawai’i who were colonized by the US in the late 1880s. Numbering about 1.3 million nationally, there are approximately 62,868 Native Hawaiians aged 55 over living in U.S., of which 60% reside in Hawai’i. They constitute the largest group within the NHOPI category.48 Their health and social profile is distressingly similar to other native colonized populations—American Indian and Alaska Native.52 Disability and poverty rates are slightly higher among Native Hawaiians, and they have higher rates of morbidity from heart disease, diabetes and several cancers than other ethnic groups in Hawaii.53 Native Hawaiians are also more likely to smoke daily, be morbidly obese, and require special equipment due to health problems than other ethnic groups in Hawaii.45 The population is younger than the general population in part due to shorter life expectancies—about 74 years versus 86 for Chinese Americans.45 The high prevalence of chronic

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health conditions suggests that this subgroup will require long-term care for a greater number of years and have a higher level of care needs. Among Native Hawaiians in Hawaii (18years and older), 52% have more than a high school education, 31% are below or near poverty, and 16% have low health literacy.49 In comparison with other race/ethnic groups discussed in this paper, few Native Hawaiians have low health literacy, suggesting that this group has greater capacity to understand and participate in the written, numeracy, and oral demands involved in the transition planning process. Native Hawaiians have larger average family and household sizes and elders are more likely to live with and have responsibilities for grandchildren. Given that elders are especially vulnerable to health risks, many Native Hawaiians need long-term care services. However, children and spouses are the most likely to provide care, as services of paid caregivers are seldom used.54 A number of cultural values remain strong among Native Hawaiians that impact eldercare. Examples include the respect for elders (kupuna) and family centeredness (ohana), the place of spirituality in all things, and respect for the land (aina). Recent studies of kupuna and their caregivers found that spirituality plays a key role in family and community relationships; there is limited knowledge on the health profiles of kupuna and their corresponding shorter life expectancies and risk factors; and family caregivers appear to rarely use formal community-based services.45,55 Taken together, health and social disparities and values highlight the need for culturally responsive health care services to improve health care access and outcomes.39,56 Implications and proposed topics for a future research agenda. These four groups share both similarities and differences in eldercare and cultural values. All cultures hold expectations for caregiving at home by the extended family.51,57,58,59, However, each are also unique and have traditional ways to define health needs and problems, heal illnesses, and manage disabilities. If cultural differences in elder and family long-term care preferences and expectations are ignored, research indicates that poor health outcomes can result.55,60,61 In short, evidence suggests that one’s health profile and cultural values influences both preferences for the setting and delivery of long-term care and decision-making in transitional care. We propose a more critical understanding and appreciation of the role of culture in such planning. Optimal transitional care is not possible when cultural linguistic factors are unrecognized that negatively impact health literacy. Still, research on the role of culture and health literacy in the nursing home to home transition is lacking. Given the country’s shifting racial demographics and current federal policy directions, increasing numbers of nursing home residents from diverse backgrounds will be given the opportunity to transition to a home or community-based setting. Health clinicians and other professionals must understand the influence of culture and language on health literacy and preferences for care,62,63 and residents and their families must be health literate so that they are able to make informed decisions in long-term transitional care. We propose six areas of continued study to further our understanding of age and the role of health literacy, culture, and language in the transition from nursing home to home. Advancing this research agenda offers promise to improve health care access, equity, and quality care, while also ensuring that long-term supports and services reflect the cultural values and preferences of a culturally diverse elder population. These areas are in alignment with the U.S. Department of Health and Human Services Plan for

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AA and NHOPI health, specifically: improving data collection in AA and NHOPI communities, aligning the health care workforce with needs of the AA and NHOPI communities, and improving health conditions and access to health care services for Native Hawaiians and Pacific Islanders.64 Taken together, these six areas argue for the need for further development and refinement of a conceptual framework that explores the interaction and interrelationships between advanced age, culture, language, and health literacy in transitional care. 1. Family assessment of health literacy abilities. The family provides much of longterm care for older adults, and yet we know little about the family’s capacity to obtain and understand health care directions. Research can make a significant contribution by investigating and assessing family [long-term care] health literacy that can result in tailored interventions, taking into account subgroups within AA and NHOPI populations and their variations in history of immigration, colonization, cultural values and care preferences, acculturation and other variables that may promote or compromise quality of care.65,66 2. Measurement issues in health literacy in ethnic minority elders. Research has yet to determine how to measure potential variations in health literacy in specific ethnic minority and immigrant elder populations. This methodological shortcoming suggests that a needed first step is to develop a comprehensive method for the assessment of cultural-linguistic and conceptual knowledge of key long-term care concepts that can be used with those populations and with those who may also have low heath literacy. This may include a review of existing measures to may need to be adapted for ethnic minority elders. 3. Culture, health literacy, and decision-making. Research should seek to uncover the contextual understanding of the relationship between culture, health literacy, and the ways that together they influence decision-making in the nursing home to home transition. There is evidence of care preferences among ethnic and cultural groups67,68,69 that influence individual and family decision-making. Sufficient understanding of the ways in which older adults and their families make decisions and maneuver long-term care services and supports can lead to intervention studies aimed at improving spoken and written literacy. 4. Adaptation or development of transition planning tools. Transition or discharge planning tools rarely pay attention to ways to support the long-term care decision making abilities of low literate and/or culturally diverse older adults.70 Existing health care literacy tools that appear to address culture often focus only on the translation of information to non-English speaking adults. As previously noted, ethnic/cultural influences on health and health care are rarely restricted to English literacy alone; instead, they are reflected in cultural-linguistic variations in the contextual definitions of disease and disability preferred treatments, and preferred modes of educational instruction.53,71 Recently, the Agency for Healthcare Research and Quality published the Health Literacy Toolkit, a good first step in ensuring patient centeredness and cultural competence in health care.72 5. Congruency between health care workers and elder/family transitional care knowledge needs and preferences. The lack of information on ways that ethnic/cultural influences impact transitional care can lead to transitional care planners making culturally-based

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assumptions as to what the individual and his/her family want or need. A reliance on nursing home staff ’s judgment and assumptions of resident preference may be incongruent with residents’ actual preferences to return to the community and also incongruent between resident and family preferences.1 An adaptation of a health literacy tool to support the nursing home-to-home transition is one suggestion that may assist nursing home staff assess, better understand, and help prepare elders and families for a return home and assist in elder and family decision-making. 6. Impact of long-term care literacy on elders and family health status and quality of life. Outcome research should explore the effectiveness (both quality and cost) of designing and delivering of culturally informed and adapted transition tools and on health and quality of life of older adults and family members in a variety of settings. In particular, does more culturally appropriate and health literacy sensitive transition planning lead to better outcomes in the community; fewer unnecessary rehospitalizations, less family burden and stress, more satisfaction with care? These questions may have special relevance to populations with a strong family-centeredness and respect for elders in the family that may be similar to Asian American and NHOPIs, the focus of this paper. Outcome research can build on the client centered approach of transitional care models and focus on being responsive to potential ethnic /cultural influences and increased awareness of different levels of an individual’s and family’s health literacy.

Conclusion Health transitions place huge demands on elders and families to understand the complex long-term care system, regardless of setting (home, nursing home, community-based program). To respond to the nation’s changing demographics, research is needed to uncover the interrelationships between age, culture, language, health literacy, and longterm care transitional care. In this article, we discussed four Asian and Pacific Islander groups: Chinese, Filipino, Japanese and Native Hawaiian older adults. Future research is needed to define the contributions and interrelationships among cultural-linguistic factors, health literacy, and health profiles as they affect long term needs, preferences, and ultimately care transition itself. Clinicians and policymakers will benefit from a better understanding of the needs of an increasingly diverse older adult population in order to ensure successful transitions across care settings.

Notes 1. Nishita CM, Wilber KH, Matsumoto S, et al. Transitioning residents from nursing facilities to community living: who wants to leave? J Am Geriatr Soc. 2008 Jan; 56(1): 1–7. 2. Grayson GK, Velkoff VA. The next four decades; the older population in the United States: 2010 to 2050. Washington, DC: Current Population Reports, P25-1138/U.S. Census Bureau, 2010. Available at: http://www.census.gov/prod/2010pubs/p25–1138 .pdf. 3. Agency for Healthcare Research and Quality. National healthcare disparities report 2009. Washington, DC: U.S. Agency for Healthcare Research and Quality, 2010 Mar. Available at: http://www.ahrq.gov/qual/nhdr09/nhdr09.pdf.

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4. Smedley BD, Stith AY, Nelson AR, (Eds.). Unequal treatment: confronting racial/ ethnic disparities in health care. Washington, DC: National Academies Press, 2002. 5. U.S. Department of Health and Human Services/Office of Minority Health. Think cultural health: advancing health equity at every point of contact. Washington, DC: U.S. Department of Health and Human Services/Office of Minority Health, 2011. Available at: https://www.thinkculturalhealth.hhs.gov/ 6. Alecxih L. Nursing home use by “oldest old” sharply declines: a report presented to the national press club. Washington, DC: The Lewin Group, 2006. Available at: http:// www.lewin.com/content/publications/NursingHomeUseTrendsPaperRev.pdf. 7. Williams L. Long-term care after Olmstead v. L.C.: will the potential of the ADA’s integration mandate be achieved? J Contemp Health Law Policy. 2000 Winter; 17(1): 205–39. 8. American Association of Retired People. Fixing to stay: a national survey on housing and home modification issues. Washington, DC: American Association of Retired People, 2000 May. Available at: http://assets.aarp.org/rgcenter/il/home_mod.pdf. 9. Centers for Medicare and Medicaid Services. Minimum data set: first quarter. (Q1a report) Washington, DC: Centers for Medicare and Medicaid Services, 2010. Available at: http://cms.hhs.gov/apps/mds/mds_notemp/q1a_start_container.asp. 10. Naylor M, Keating SA. Transitional care. Am J Nurs. 2008 Sep;108(9 Suppl): 58–63. 11. Coleman EA, Smith JD, Frank JC et al. Preparing patients and caregivers to participate in care delivery across settings: the care transitions intervention. J Am Geriatr Soc. 2004 Nov; 52(11): 1817–25. 12. Naylor MD, Sochalski JA. Scaling up: bringing the transitional care model into the mainstream. Issue Brief (Commonw Fund). 2010 Nov; 103:1–12. 13. Naylor MD, Brooten DA, Campbell RL, et al. Transitional care of older adults hospitalized with heart failure: a randomized controlled trial. J Am Geriatr Soc. 2004 May; 52(5):675–84. 14. Coleman EA, Parry C, Chalmers S, et al. The care transitions intervention: results of a randomized controlled trial. Arch Intern Med. 2006 Sep; 166(17): 1822–8. 15. Naylor MD. Nursing intervention research and quality of care: influencing the future of healthcare. Nurs Res. 2003 Nov–Dec; 52(6):380–5. 16. California Health Care Foundation. Navigating care transitions in California: two models for change. Oakland, CA: Issue Brief/California Health Care Foundation, 2008 Sep. Available at: http://www.caretransitions.org/documents/CA_Two_Models .pdf. 17. U.S. Department of Health and Human Services/Office of Disease Prevention and Health Promotion. Healthy People, 2010. Washington, DC: U.S. Department of Health and Human Services/Office of Disease Prevention and Health Promotion, 2010. 18. Health literacy: report of the Council on Scientific Affairs. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. JAMA. 1999 Feb; 281(6): 552–7. 19. Davis TC, Long SW, Jackson RH, et al. Rapid estimate of adult literacy in medicine: a shortened screening instrument. Fam Med. 1993 Jun; 25(6):391–5. 20. DeWalt DA, Malone RM, Bryant ME, et al. A heart failure self-management program for patients of all literacy levels: a randomized, controlled trial. BMC Health Serv Res. 2006 Mar 13; 6:30. 21. Seligman HK, Wang FF, Palacios JL, et al. Physician notification of their diabetes patients’ limited health literacy: a randomized, controlled trial. J Gen Intern Med. 2005 Nov; 20(11): 1001–7.

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