Exposing the Backstage: Critical Reflections on a Longitudinal Qualitative Study of Residents' Care Networks in Assisted Living.

In this article, we analyze the research experiences associated with a longitudinal qualitative study of residents' care networks in assisted living. Using data from researcher meetings, field notes, and memos, we critically examine our design and decision making and accompanying methodological implications. We focus on one complete wave of data collection involving 28 residents and 114 care network members in four diverse settings followed for 2 years. We identify study features that make our research innovative, but that also represent significant challenges. They include the focus and topic; settings and participants; scope and design complexity; nature, modes, frequency, and duration of data collection; and analytic approach. Each feature has methodological implications, including benefits and challenges pertaining to recruitment, retention, data collection, quality, and management, research team work, researcher roles, ethics, and dissemination. Our analysis demonstrates the value of our approach and of reflecting on and sharing methodological processes for cumulative knowledge building.

Limiting and Promoting Resident Self-Care in Assisted Living.

OBJECTIVES: Assisted living (AL) residents often manage multiple chronic conditions, functional and/or cognitive decline along with their individual needs and preferences for a full life. Although residents participate in their own care, little is known about their self-care activities and how to support them. This analysis focuses on residents' self-care and theorizing the dynamic, socially embedded process of negotiating self-care. METHODS: We analyze data from a grounded theory study informed by the Convoys of Care model. Participants included 50 focal residents and 169 paid and unpaid convoy members in eight AL homes; each resident convoy was followed up for 2 years. Data collection included participant observation, interviews, and resident record review. RESULTS: To the extent possible, most AL residents were involved in self-care related to activities of daily living, health promotion, and social, emotional, and mental well-being. Residents and care partners engaged in a dynamic process of limiting and promoting self-care activities. Multiple factors influenced self-care, including residents' past self-care behaviors, caregiver fear and availability, and the availability of services and supports. DISCUSSION: Strategies for promoting self-care must involve residents and care partners and include convoy education in collaborative goal-setting, prioritizing care that supports the goals, and putting resources in place to support goal achievement.

Communicative Competence: Responding to Residents' Health Changes in Assisted Living.

BACKGROUND AND OBJECTIVES: Frail and disabled individuals, including assisted living (AL) residents, are embedded in care convoys composed of dynamic networks of formal and informal care partners. Yet, little is known about how care convoys operate over time, especially when health changes occur. Thus, our aim was to provide an in-depth understanding of care convoy communication during times of residents' health changes in AL. RESEARCH DESIGN AND METHODS: Data for this analysis come from a Grounded Theory study that involved 50 residents and their care convoy members (n = 169) from 8 diverse AL communities followed over 2 years. Researchers conducted formal and informal interviewing, participant observation, and record review. RESULTS: We identified "communicative competence" as an explanatory framework in reference to a resident's or care partner's ability, knowledge, and action pertaining to communication and health change. Individual and collective competencies were consequential to timely and appropriate care. Communication involved: identifying; assessing significance; informing, consulting or collaborating with others; and responding to the change. Variability in communication process and properties (e.g., pace and timing; sequencing, timing, content, and mode of communication) depended on multiple factors, including the nature of the change and resident, informal and formal caregiver, convoy, AL community, and regulatory influences. DISCUSSION AND IMPLICATIONS: Formal and informal care partners need support to establish, enhance, and maintain communicative competence in response to health changes. Findings reinforce the need for timely communication, effective systems, and well-documented accessible health care directives and have implications that are applicable to AL and other care settings.

Individualization and the Health Care Mosaic in Assisted Living.

BACKGROUND AND OBJECTIVES: Assisted living (AL) is a popular residential long-term care option for frail older adults in the United States. Most residents have multiple comorbidities and considerable health care needs, but little is known about their health care arrangements, particularly over time. Our goal is to understand how health care is managed and experienced in AL by residents and their care network members. RESEARCH DESIGN AND METHODS: This grounded theory analysis focuses on the delivery of health care in AL. Qualitative data were gathered from 28 residents and 114 of their care network members followed over a 2-year period in 4 diverse settings as part of the larger study, "Convoys of Care: Developing Collaborative Care Partnerships in Assisted Living." RESULTS: Findings show that health care in AL involves routine, acute, rehabilitative, and end-of-life care, is provided by residents, formal and informal caregivers, and occurs on- and off-site. Our conceptual model derived from grounded theory analysis, "individualizing health care," reflects the variability found in care arrangements over time and the multiple, multilevel factors we identified related to residents and caregivers (e.g., age, health), care networks (e.g., size, composition), residences (e.g., ownership), and community and regulatory contexts. This variability leads to individualization and a mosaic of health care among AL residents and communities. DISCUSSION AND IMPLICATIONS: Our consideration of health care and emphasis on care networks draw attention to the importance of communication and need for collaboration within care networks as key avenues for improving care for this and other frail populations.

Maneuvering Together, Apart, and at Odds: Residents' Care Convoys in Assisted Living.

Objectives: Frail and disabled individuals such as assisted living residents are embedded in "care convoys" comprised of paid and unpaid caregivers. We sought to learn how care convoys are configured and function in assisted living and understand how and why they vary and with what resident and caregiver outcomes. Method: We analyzed data from a qualitative study involving formal in-depth interviews, participant observation and informal interviewing, and record review. We prospectively studied 28 residents and 114 care convoy members drawn from four diverse assisted living communities over 2 years. Results: Care convoys involved family and friends who operated individually or shared responsibility, assisted living staff, and multiple external care workers. Residents and convoy members engaged in processes of "maneuvering together, apart, and at odds" as they negotiated the care landscape routinely and during health crises. Based on consensus levels, and the quality of collaboration and communication, we identified three main convoy types: cohesive, fragmented, and discordant. Discussion: Care convoys clearly shape care experiences and outcomes. Identifying strategies for establishing effective communication and collaboration practices and promoting convoy member consensus, particularly over time, is essential to the creation and maintenance of successful and supportive care partnerships.

Contours of "here": Phenomenology of space for assisted living residents approaching end of life.

Informed by theory from environmental gerontology, this study investigates how assisted living residents who are approaching end of life navigate and experience space. Since its development, environmental gerontology has moved beyond the concept of person-environment fit to encompass aspects of place attachment and place integration, processes by which inhabited impersonal space becomes a place of individual personal meaning and this person-place relationship evolves with changing needs. Our study is a secondary data analysis of in-depth interviews completed with the first 15 residents (mean age 88, range 65-103; 8 white and 7 black) recruited from four diverse assisted living communities in metropolitan Atlanta. Using interpretative phenomenological analysis, we identify five overarching themes within and across assisted living communities and their subthemes. Findings show that participants experience a neutral theme of shrinking space, negative themes of confinement and vulnerability, and positive themes of safety and intimacy. Results dovetail with other phenomenologically based environmental gerontology research from community-dwelling populations that indicate behavioral changes to accommodate aging and health decline. Findings have implications for interventions to improve place integration in AL and enhance residents' quality of life at end of life, including developing strategies to promote small meaningful journeys within context of shrinking life space.

Couples' Social Careers in Assisted Living: Reconciling Individual and Shared Situations.

PURPOSE OF THE STUDY: Despite important connections between relationships, health, and well-being, little is known about later-life couples' daily lives and experiences, especially those who are frail. Our aim was to advance knowledge by gaining an in-depth understanding of married and unmarried couples' intimate and social relationships in assisted living (AL) and by generating an explanatory theory. DESIGN AND METHODS: Using Grounded Theory Methods, we build on past research and analyze qualitative data from a 3-year mixed-methods study set in eight diverse AL settings located in the state of Georgia. Data collection included participant observation and informal and formal interviews yielding information on 29 couples, 26 married and 3 unmarried. RESULTS: Defined by their relationships with one another and those around them, couples' experiences were variable and involved a process of reconciling individual and shared situations. Analysis affirms and expands an existing typology of couples in AL. Our conceptual model illustrates the multilevel factors influencing the reconciliation process and leading to variation. Findings highlight the strengths and burdens of late-life couplehood and have implications for understanding these intimate ties beyond AL. IMPLICATIONS: Intimate and social relationships remain significant in later life. Strategies aimed at supporting couples should focus on individual and shared situations, particularly as couples' experience physical and cognitive decline across time.

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.

Managing the care needs of low-income board-and-care home residents: a process of negotiating risks.

Small, low-income board-and-care homes play a critical role in the long-term care system, serving a variety of at-risk groups, including chronically mentally ill individuals, frail elders, and developmentally disabled adults. Unfortunately, the supply of homes available to serve these populations is decreasing. The purpose of this study, based on an in-depth ethnographic case study of one small (13-bed) African American-owned and -operated home in metropolitan Atlanta, was to understand how and why some homes continue to operate despite significant challenges. Grounded theory analysis showed that the survival of this home and residents' ability to remain in it involved a basic social process conceptualized as Negotiating Risks. This survival process often put participants at risk of losing their means of subsistence. Community support emerged as an important protective factor. Findings have implications for community interventions to increase these homes' survival and improve resident care.

"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.

Convoys of care: theorizing intersections of formal and informal care.

Although most care to frail elders is provided informally, much of this care is paired with formal care services. Yet, common approaches to conceptualizing the formal-informal intersection often are static, do not consider self-care, and typically do not account for multi-level influences. In response, we introduce the "convoy of care" model as an alternative way to conceptualize the intersection and to theorize connections between care convoy properties and caregiver and recipient outcomes. The model draws on Kahn and Antonucci's (1980) convoy model of social relations, expanding it to include both formal and informal care providers and also incorporates theoretical and conceptual threads from life course, feminist gerontology, social ecology, and symbolic interactionist perspectives. This article synthesizes theoretical and empirical knowledge and demonstrates the convoy of care model in an increasingly popular long-term care setting, assisted living. We conceptualize care convoys as dynamic, evolving, person- and family-specific, and influenced by a host of multi-level factors. Care convoys have implications for older adults' quality of care and ability to age in place, for job satisfaction and retention among formal caregivers, and for informal caregiver burden. The model moves beyond existing conceptual work to provide a comprehensive, multi-level, multi-factor framework that can be used to inform future research, including research in other care settings, and to spark further theoretical development.

Coming together and pulling apart: Exploring the influence of functional status on co-resident relationships in assisted living.

Social relationships can have considerable influence on physical and mental well-being in later life, particularly for those in long-term care settings such as assisted living (AL). Research set in AL suggests that other residents are among the most available social contacts and that co-resident relationships can affect life satisfaction, quality of life, and well-being. Functional status is a major factor influencing relationships, yet AL research has not studied in-depth or systematically considered the role it plays in residents' relationships. This study examines the influences of physical and mental function on co-resident relationships in AL and identifies the factors shaping the influence of functional status. We present an analysis of qualitative data collected over a one-year period in two distinct AL settings. Data collection included: participant observation, informal interviews, and formal in-depth interviews with staff, residents, administrators and visitors, as well as surveys with residents. Grounded theory methods guided our data collection and analysis. Our analysis identified the core category, "coming together and pulling apart", which signifies that functional status is multi-directional, fluid, and operates in different ways in various situations and across time. Key facility- (e.g., admission and retention practices, staff intervention) and resident-level (e.g., personal and situational characteristics) factors shape the influence of functional status on co-resident relationships. Based on our findings, we suggest strategies for promoting positive relationships among residents in AL, including the need to educate staff, families, and residents.

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.

"Meds Are a Real Tricky Area": Examining Medication Management and Regulation in Assisted Living.

Medication management is among the most commonly cited reasons for moving to assisted living and is closely associated with resident quality of care and life. Yet the issue has received little research attention. Using data from the statewide study, "Job Satisfaction and Retention of Direct Care Staff in Assisted Living," this article examines medication management policies and practices across 45 facilities in Georgia. Guided by principles of Grounded Theory Method, we analyzed qualitative data from surveys with 370 direct care workers (DCWs) and in-depth interviews with 41 DCWs and 44 administrators. Our analysis showed that medication managers vary widely in their backgrounds, positions, and training, largely based on home size and resources. Despite identifying common dimensions of the medication management process, we found variation in procedures and regulatory compliance based on facility, staff, and resident factors. Our findings relate to and extend existing work and have practice and research implications.

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.

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.

"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.

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.