"This is our last stop": Negotiating end-of-life transitions in assisted living.

Where people die has important implications for end-of-life (EOL) care. Assisted living (AL) increasingly is becoming a site of EOL care and a place where people die. AL residents are moving in older and sicker and with more complex care needs, yet AL remains largely a non-medical care setting that subscribes to a social rather than medical model of care. The aims of this paper are to add to the limited knowledge of how EOL is perceived, experienced, and managed in AL and to learn how individual, facility, and community factors influence these perceptions and experiences. Using qualitative methods and a grounded theory approach to study eight diverse AL settings, we present a preliminary model for how EOL care transitions are negotiated in AL that depicts the range of multilevel intersecting factors that shape EOL processes and events in AL. Facilities developed what we refer to as an EOL presence, which varied across and within settings depending on multiple influences, including, notably, the dying trajectories and care arrangements of residents at EOL, the prevalence of death and dying in a facility, and the attitudes and responses of individuals and facilities toward EOL processes and events, including how deaths were communicated and formally acknowledged and the impact of death and dying on the residents and staff. Our findings indicate that in the majority of cases, EOL care must be supported by collaborative arrangements of care partners and that hospice care is a critical component.

Social relations and resident health in assisted living: an application of the convoy model.

PURPOSE: This article, based on analysis of data from a mixed methods study, builds on a growing body of assisted living (AL) research focusing on the link between residents' social relationships and health. A key aim of this analysis, which uses the social convoy model as a conceptual and methodological framework, was to examine the relative importance of coresident relationships and other network ties to residents' subjective well-being. DESIGN AND METHODS: We analyzed data from structured face-to-face interviews and social network mapping conducted with 192 AL residents in 9 AL facilities in Georgia. RESULTS: Having a higher proportion of family ties in one's network was the single most important predictor of well-being, whereas possessing some ties to coresidents and nonfamily members outside AL also had a positive effect. Findings showed that relationships among coresidents generally were important although not emotionally close. Having more close ties was associated with lower well-being, suggesting that not all close ties are beneficial. The majority (84%) of residents' closet ties were with family members. IMPLICATIONS: Findings illuminate the crucial role families play in residents' overall health and well-being and demonstrate the importance of helping residents develop and maintain a range of network ties, including "weak" ties with coresidents and nonfamily outside AL.

Relational Autonomy in Assisted Living: A Focus on Diverse Care Settings for Older Adults.

Consistent with Western cultural values, the traditional liberal theory of autonomy, which places emphasis on self-determination, liberty of choice, and freedom from interference by others, has been a leading principle in health care discourse for several decades. In context to aging, chronic illness, disability, and long-term care, increasingly there has been a call for a relational conception of autonomy that acknowledges issues of dependency, interdependence, and care relationships. Although autonomy is a core philosophy of assisted living (AL) and a growing number of studies focus on this issue, theory development in this area is lagging and little research has considered race, class, or cultural differences, despite the growing diversity of AL. We present a conceptual model of autonomy in AL based on over a decade of research conducted in diverse facility settings. This relational model provides an important conceptual lens for understanding the dynamic linkages between varieties of factors at multiple levels of social structure that shape residents' ability to maintain a sense of autonomy in this often socially challenging care environment. Social and institutional change, which is ongoing, as well as the multiple and ever-changing cultural contexts within which residents are embedded, are important factors that shape residents' experiences over time and impact resident-facility fit and residents' ability to age in place.

Strangers and friends: residents' social careers in assisted living.

OBJECTIVES: This study examines coresident relationships in assisted living (AL) and identifies factors influencing relationships. METHODS: We draw on qualitative data collected from 2008 to 2009 from three AL communities varying in size, location, and resident characteristics. Data collection methods included participant observation, and informal and formal, in-depth interviews with residents, administrators, and AL staff. Data analysis was guided by principles of grounded theory method, an iterative approach that seeks to discover core categories, processes, and patterns and link these together to construct theory. RESULTS: The dynamic, evolutionary nature of relationships and the individual patterns that comprise residents' overall experiences with coresidents are captured by our core category, "negotiating social careers in AL." Across facilities, relationships ranged from stranger to friend. Neighboring was a common way of relating and often involved social support, but was not universal. We offer a conceptual model explaining the multilevel factors influencing residents' relationships and social careers. DISCUSSION: Our explanatory framework reveals the dynamic and variable nature of coresident relationships and raises additional questions about social career variability, trajectories, and transitions. We discuss implications for practice including the need for useable spaces, thoughtful activity programming, and the promotion of neighboring through staff and family involvement.

Pathways to Assisted Living: The Influence of Race and Class.

This article examines how race and class influence decisions to move to assisted living facilities. Qualitative methods were used to study moving decisions of residents in 10 assisted living facilities varying in size and location, as well as race and socioeconomic status of residents. Data were derived from in-depth interviews with 60 residents, 43 family members and friends, and 12 administrators. Grounded theory analysis identified three types of residents based on their decision-making control: proactive, compliant, and passive/resistant. Only proactive residents (less than a quarter of residents) had primary control. Findings show that control of decision making for elders who are moving to assisted living is influenced by class, though not directly by race. The impact of class primarily related to assisted-living placement options and strategies available to forestall moves. Factors influencing the decision-making process were similar for Black and White elders of comparable socioeconomic status.

"I get along with most of them": direct care workers' relationships with residents' families in assisted living.

PURPOSE: The purpose of this article was to explore staff-family relationships in assisted living facilities (ALFs) as they are experienced by care staff and perceived by administrators. We identify factors that influence relationships and explore how interactions with residents' families affect care staff's caregiving experiences. DESIGN AND METHODS: The data are drawn from a statewide study involving 45 ALFs in Georgia. Using grounded theory methods, we analyze qualitative data from in-depth interviews with 41 care staff and 43 administrators, and survey data from 370 care staff. RESULTS: Care workers characterized their relationships with most family members as "good" or "pretty good" and aspired to develop relationships that offered personal and professional affirmation. The presence or absence of affirmation was central to understanding how these relationships influenced care staffs' on-the-job experiences. Community, facility, and individual factors influenced the development of relationships and corresponding experiences. Insofar as interactions with family members were rewarding or frustrating, relationships exerted positive or negative influences on workers' caregiving experiences. IMPLICATIONS: Findings suggest the need to create environments -- through policy and practice -- where both parties are empathetic of one another and view themselves as partners. Doing so would have positive outcomes for care workers, family members, and residents.

"They Are the Reason I Come to Work": The Meaning of Resident-Staff Relationships in Assisted Living.

This article aims to provide understanding of how direct care workers (DCWs) in assisted living facilities (ALFs) interpret their relationships with residents and to identify factors that influence the development, maintenance, quality, and meaning of these relationships. Qualitative methods were used to study two ALFs (35 and 75 beds) sequentially over seven months. Researchers conducted in-depth interviews with 5 administrative staff and 38 DCWs and conducted 243 hours of participant observation during a total of 99 visits. Data were analyzed using a grounded theory approach. Results showed that the emotional aspect of caregiving provides meaning to DCWs through both the satisfaction inherent in relationships and through the effect of relationships on care outcomes. Within the context of the wider community and society, multiple individual- and facility-level factors influence DCW strategies to create and manage relationships and carry out care tasks and ultimately find meaning in their work. These meanings affect their job satisfaction and retention.

Managing decline in assisted living: the key to aging in place.

OBJECTIVE: This study investigates the process of aging in place in assisted living facilities (ALFs) and seeks to gain an in-depth understanding of the factors influencing this phenomenon in a variety of ALF contexts. METHODS: Qualitative methods were used to study five ALFs for 1 year. Data collection methods included participant observation; informal and in-depth interviewing of providers, residents, and residents' families; and review of resident and facility records. Analysis was conducted using the grounded theory approach. RESULTS: The ability of residents to remain in assisted living was principally a function of the "fit" between the capacity of both residents and facilities to manage decline. Multiple community, facility, and resident factors influenced the capacity to manage decline, and resident-facility fit was both an outcome and an influence on the decline management process. Resident and facility risk also was an intervening factor and a consequence of decline management. DISCUSSION: Findings point out the complexity of aging in place in ALFs and the need for a coordinated effort by facilities, residents, and families in the management of resident decline. Findings further highlight the necessity of residents being well informed about both their own needs and the capacity of a facility to meet them.

Assessing the effectiveness of a walking program on physical function of residents living in an assisted living facility.

The purpose of this study was to assess the effectiveness of a resident-led walking program at an assisted living facility (ALF). Seventeen women (mean age 80, range 62-99) agreed to participate in a "walking club." Pre and post measurements included the Tinetti Performance-Oriented Assessment of Mobility Problems in Elderly Patients, the Functional Reach Test, and the Barthel Index to measure independence in activities of daily living (ADLs). Participants set their own goals for walking distance and frequency, with the assistance of the lead researcher if requested. Distances ranged from 75 ft to over 1 mile. At the end of the 9-week intervention, there was a significant increase in all of the pre-test measurements. In addition, post-test assessment included individual interviews with participants about their experiences with the physical activity program. Four positive themes about the walking program emerged: (a) as a pleasurable activity, (b) as a way to manage current health problems, (c) as a way to continue life-long activity, and (d) because of perceived physical and psychological benefits from the activity. The participants planned to continue the walking program. The results of this pilot study suggest that a walking program can be instituted in an assisted living facility with minimal staff effort and significant benefit to residents.