The family caregiving career: implications for community-based long-term care practice and policy

Informal (i.e., unpaid) long-term care for disabled older adults is often chronic, but it is only recently that research has considered the longitudinal implications of family caregiving. In particular, investigators have conceptualized caregiving as a "career," and within the caregiving career, a number of diverse trajectories and transitions can occur. Following a summary of these findings, this paper considers how longitudinal caregiving research can influence and potentially address key policy and practice concerns, especially in the delivery and support of community-based long-term care (CBLTC) services. It is suggested that with the refinement of the informal long-term care literature, existing policy and practice to support caregiving families can be similarly advanced.     

Preservation of self in the nursing home: Contradictory practices within two models of care

Researchers have identified several aspects of nursing home care that interfere with residents' preservation of self. This paper examines how different models of care shape residents' opportunities for preserving a sense of self, adult identity, and agency. Using ethnographic data, I analyze staff practices in two facilities that reflect the contrast between the home and hospital models of long-term care. Previous research on long-term care suggests that an informal, “home-like” approach to care creates more opportunities for residents to preserve a sense of self-identity, whereas a formal, “institutional” approach fosters depersonalizing practices that interfere with residents' psychosocial well-being. My research suggests, however, that both approaches can have contradictory effects on residents' preservation of self. I analyzed patterns of objectification and infantilization that emerged in the social interactions between residents and staff members, as well as practices that mitigated these patterns. This study highlights how a larger culture of ageism and stigma surrounding dependency can become embedded in micro-level practices and underscores the challenges of defining and implementing “good” care.     

Dignity in dementia: Person-centered care in community

Drawing on Kitwood's [Ageing Soc. 13 (1993) 51] theory of person-centered care and the interpersonal process of caregiving, this article offers an alternative to the image of the family caregiver as victim through an exploration of the lived experience of caring for a person with dementia in community. Extending care beyond coping, the act of giving care is promoted as a worthy activity and reciprocal social opportunity. Three nonfamily caregiver “portraits” are offered in an arts-informed representational form. The relational processes of caregiving are explored from the vantage point of personal experience and theoretical knowledge. Dignity emerges as the resonant quality, essential value, and guiding principle in an ethic of dementia care. Implications about the direction of research about care and caregiving and research accessibility and usefulness are explored.     

The roles of adult daughters in long-term care facilities: Alternative role manifestations

Our understanding of the roles of family members within long-term care settings remains limited. Existing research conceptualizes the term “role” as a unidimensional concept and views the caregiving role as static. Employing a multidimensional conceptualization of roles, and guided by symbolic interactionism and the conceptual framework of the caregiving career, the purpose of this study was to gain a deeper and more comprehensive understanding of the roles of adult daughters in long-term care facilities from their perspectives. Specific techniques of the grounded theory approach combined with active interviews and personal logs were used as the research design procedures. Five caregiving role manifestations emerged in the women's stories: active monitors, regular visitors, accepting relinquishers, unaccepting relinquishers, and indirect supporters. Several factors explained differences in the role manifestations such as the focus of the support, perceptions of the psychological presence of the parent, and the sense of obligation and pressure to care.     

Predicting supportive behavior of parents and siblings to a family member with intellectual disability living in institutional care

This feasibility study examines whether the theory of planned behavior can predict supportive behavior provided by either parents to their offspring-or adult siblings to their brothers and sisters-with an intellectual disability living in 2 Israeli institutional care facilities. Participants were 67 parents and 63 siblings who were interviewed at baseline regarding their intentions to visit their offspring or sibling in the institutional care facility, to contact the caregiving staff, and to accept visits at home. Parents' and siblings' behavior regarding visitation and supportive behavior was examined after 6 months by caregiving staff. Core findings indicated that subjective norms in siblings and parents predicted frequency of home visits. Perceived behavioral control predicted frequency of contact between siblings and staff. Differences between parents and siblings regarding their supportive behaviors are discussed with respect to social work practice.     

Becoming institutional bodies: Socialization into a long-term care home

This paper reports the findings from a phenomenological study examining the lived experience of moving to a long-term care facility and the process of socialization for new residents into the nursing home culture and environment. Three residents were followed over the first six months after moving to a long-term care facility using a series of in depth interviews and participant observation with residents themselves, staff members and family members. This paper focuses on the five institutional level processes related to socialization into the long-term care environment as they were experienced by the new residents. These included: placing the body, defining the body, focusing on the body, managing the body, and relating to the body. The findings point to the importance of place in the construction of institutional bodies in the long-term care context.     

Spousal motivations of care for demented older adults: A cross-cultural comparison of Greek and American female caregivers

Purpose of the study: This study examines motivations for caregiving in American and Greek female spousal caregivers (FSCGs), and identifies cross-culturally equivalent and culturally specific types of motivations for care of a demented spouse. Design and Methods: Thirty American women and 44 Greek women who were caring for their demented husbands were surveyed about their motivations for caregiving. Results: Greek and American FSCGs were dissimilar in the extent to which they reported being motivated by a desire to maintain family harmony. Greek and American caregivers also differed in how often they cited financial reasons, wanting to please their spouse, being against institutionalization, and giving the best care as motivations for care. Implications: Culturally related differences in caregiving motivations may translate into differences in the extent to which motivations result in adaptive or maladaptive outcome for the caregiver and the care recipient.     

Examining the trajectories of children providing care for adults in rural Kenya: Implications for service delivery

Research on caregiving children tends to be limited to children's caregiving experiences of parents with a specific disease or disability. This has led to a common perception that children's caregiving is a single, uniform and often long-term experience. Whilst this is most certainly the case for many children in economically more advanced countries, this may not hold true in rural Africa, where poverty and AIDS can have significant knock-on effects on entire families and communities. This paper seeks to develop a more complex understanding of children's caring experiences by asking children whom they have cared for over time and explore the different pathways that lead to their caregiving at different stages of their lives. The study reports on qualitative data collected from 48 caregiving children and 10 adults in the Bondo district of western Kenya in 2007. A multi-method approach was adapted, with historical profiles, Photovoice and draw-and-write essays complementing 34 individual interviews and 2 group discussions. A thematic network analysis revealed that children's caregiving was not confined to a single experience. Children were observed to provide care for a number of different family and community members for varying periods of time and intensities. Although their living arrangements and life circumstances often gave them little choice but to care, a social recognition of children's capacity to provide care for fragile adults, helped the children construct an identity, which both children and adults drew on to rationalise children's continued and multiple caring experiences. The study concludes that agencies and community members looking to support caregiving children need to consider their care trajectories — including whom they care for as well as the order, intensity, location and duration of their past and likely future caring responsibilities.     

An exploration of older Hong Kong residents’ willingness to make copayments toward vouchers for community care

Because of its rapidly aging population, Hong Kong faces great challenges in the provision and financing of long-term care (LTC) and needs to explore sustainable funding mechanisms. However, there is a paucity of research on older people’s willingness to pay (WTP) for LTC services in Hong Kong. This study utilizes data collected in Hong Kong in 2011 (N = 536) to investigate older people’s receptivity to this financing mode by assessing their co-payments for a community care service voucher scheme and then testing how potential factors affect respondents’ amount of co-payment. Results show that respondents’ WTP was positively associated with family financial support, financial condition, and positive attitudes toward this novel policy and negatively associated with family caregiving support. Direct and moderating effects of family financial support on WTP were found. The policy-related implications of LTC financing to improve older people’s acceptance of co-payment mechanisms, financial condition, and shared responsibility of care are discussed.     

Use of data to assess performance and promote outcome achievement by public and private child welfare agency staff

Despite the emphasis on evidence-based practice in the literature, little is known about the extent to which child welfare workers routinely use data to assess the effectiveness of their practice, or consider an array of evidence informed practices such as peer record review, supervisory sessions or program evaluation as useful in improving their performance. This study, conducted as a part of the planning phase for a larger research and demonstration project measured frontline staff perceptions in both the public and private sectors in one state regarding these and other outcome-focused activities. Statistically significant differences were noted between public and private agency staff. In addition, the relationship between staff's use of data and their assessment of their own skill and the support provided by their agency for an array of out-of-home care practice activities are described. Implications for building the use of evidence-informed practice in child welfare are discussed.     

Peer violence in adolescent residential care: A qualitative examination of contextual and peer factors

This research examined the way contextual and peer factors influence peer violence in adolescent residential care. One hundred and twenty residents aged 11–21 from 20 residential care facilities participated in 20 focus groups about peer violence in care. The results demonstrated that four, mutually interrelated themes, contributed to explanations of violence amongst residents: 1) residential peer culture; 2) vulnerability at the beginning of institutionalization; 3) deprivation, stigmatization and frustration; and 4) poor relationship with staff. The results are discussed with reference to the existing residential care and prison-based research on bullying and peer violence and a number of research and policy recommendations are provided.     

Pathologizing behavior: Meanings of behaviors in dementia care

Deficit and problem-based approaches to behavior stigmatize persons with dementia and cause great unnecessary suffering. In order to reduce the harm caused to persons misunderstood, it is important to understand the process by which staff attach meaning to behaviors and how those meanings ultimately influence how staff respond to behaviors. To this end, this research sought to examine the perceptions and meanings that staff attach to behaviors, how staff experience these behaviors, and the role that meanings and experiences have in staff actions and responses to specific behaviors. This paper focuses on one sensitizing concept that emerged from our study — pathologizing behavior — that reflects how behaviors become pathologized and problematized in the long-term care context. Conducted as part of a larger interpretive grounded theory study, active interviews were conducted with 48 staff members working in a range of positions in long-term care homes in Ontario, Canada. All staff interpreted and placed residents' behaviors in context through a complex process that started with the process of filtering behavior through the lens of pathology, and guided how staff then assigned meaning to the behaviors, how they characterized behaviors as “challenging”, and ultimately reacted through crisis management. The findings demonstrate the impact biomedical discourses have on meanings attached to behaviors and responses to behaviors and point to the need for alternative discourses that emphasize understanding meanings of actions using multidimensional lenses.     

Informal caregivers' leisure time and stress

This article explores the disruption informal caregiving creates in the caregiver's family life and the relationship between leisure and stress caused by caregiving. The study finds that the caregiving setting, caregiver's sociodemographic characteristics, and economic variables (i.e., wage rate, nonwage income, and Medicaid coverage) significantly affect the caregiver's leisure. Additionally, reducing leisure leads to emotional and physical stress and less satisfaction with life overall. The article concludes with implications for public policy. Her research interests include long-term health care and medical service utilization for minority populations. She holds a doctorate from Northwestern University. He has published extensively in the areas of health services research and nonprofit organizations. His doctorate is from the University of Virginia.     

Dynamic modelling of long-term care decisions

This paper describes and analyzes research on the dynamics of long-term care and the policy relevance of identifying the sources of persistence in caregiving arrangements (including the effect of dynamics on parameter estimates, implications for family welfare, parent welfare, child welfare, and cost of government programs). We discuss sources and causes of observed persistence in caregiving arrangements including inertia/state dependence (confounded by unobserved heterogeneity) and costs of changing caregivers. We comment on causes of dynamics including learning/human capital accumulation; burnout; and game-playing. We suggest how to deal with endogenous geography; dynamics in discrete and continuous choices; and equilibrium issues (multiple equilibria, dynamic equilibria). We also present an overview of commonly used longitudinal data sets and evaluate their relative advantages/disadvantages. We also discuss other data issues related to noisy measures of wealth and family structure. Finally, we suggest some methods to handle econometric problems such as endogeneous geography.     

Caregivers as comptrollers: women and long-term care and cost containment

The emphasis on cost containment that was the hallmark of the Reagan Administration and the shifting of the burden for long-term care onto the informal sector have had a particularly negative impact on women. Women through caregiving are used to help control the public cost of long-term care. This unwritten policy is unlikely to be successful because of a number of factors: (1) the economic condition of women; (2) the lack of available and affordable community services; and (3) the types of social relationships we now have.     

The silent impact of ageist communication in long term care facilities: Elders' perspectives on quality of life and coping strategies

Communication is an essential component of any caregiving relationship. This is especially the case for institutionalized elders who need to maintain strong and empowering social bonds with caregivers. Previous studies have shown that communication can be a powerful transmitter of age-based stereotypes and as such, can lead to psychological disengagement and lowered self-esteem. In light of these results supporting the postulates of Communication Accommodation Theory, the main goal of the current study is to gain a better understanding of the role and impact of communication in the context of a caregiving relationship. Precisely, this study explored the extent to which institutionalized elders perceive daily communication with caregivers as being ageist, as well as the impact of such perceptions on quality of life in the facility and coping strategies used by elders. To do so, a total of 33 in depth and semi-structured interviews were conducted with elders living in long-term care facilities in the province of Quebec. Results of qualitative and quantitative data analyses suggest that communication with caregivers is indeed perceived as ageist by the majority of elders and that such perceptions diminish the perceived quality of life in the facility; furthermore, most elders seem to cope with ageism by accommodating caregivers, a strategy that may ironically reinforce patterns of ageist communication.     

Culture Change in Skilled Nursing: An Exploratory Comparison of a Traditional Home to a New Model

Abstract

The culture change movement has pushed for reform for more than two decades to align policy, the long-term care industry, and resident preferences with regard to care. Evidence from research indicates that culture change has the potential to improve quality in nursing homes. There is no one-size-fits-all way to implement culture change; however, there are key elements and associated concepts and models. A common thread is that they run counter to the medical model, typically found in nursing homes, where care is provided in a hospital-like setting according to the schedules and routines of physicians and staff with little resident input. This qualitative study looks for evidence of culture change in a traditional model of care compared to a newer culture change model, by describing the differences in practices associated with the medical model, person-centered care, and person-directed care between the two settings. Our results indicate that there is evidence of person-directed care in one model of culture change—the Green House home—but not in the traditional nursing home. Future studies should examine other culture change models to compare the differences in the utilization of person-directed care. This information will help to clarify the definitions and concepts of culture change, along with developing best practices for future culture change models.     

Formal and informal care: discontinuities in a continuum

Informal caregiving by family, friends, neighbors, and self-help groups is being given greater attention as human-service policy seeks to establish a continuum of care knitting together professional efforts and informal helping. However, there are many contradictions in assumptions and perspectives about who should handle problems and in what way. Alternative modes of interaction are outlined to indicate the variety of relationships that have developed in response to differences in assumptions about care. Collaboration between formal and informal helping efforts requires that the informal sector be able to influence professional and organizational expectations regarding responsibility, authority, and credibility.