Cumulative Disempowerment: How Families Experience Older Adults' Transitions into Long-Term Residential Care.

Although emerging research links family experiences with long-term residential care (LTRC) transitions to structural features of health care systems, existing scholarship inadvertently tends to represent the transition as an individual problem to which families need to adjust. This secondary qualitative analysis of 55 interviews with 22 family members caring for an older adult engages a critical gerontological lens. A concept of cumulative, structural empowerment informs this analysis of families' experiences across a broad continuum of older adults' moves into LTRC. Leading up to transitions, families have little power over home care services, and family members have little control over their involvement in care provision. Some families respond by making choices to refuse publicly provided service options, therein both resisting and reinforcing broader relations of power. Expectations for family involvement in LTRC placement decisions were incongruent with some families' experiences, reinforcing a sense of powerlessness compounded by the speed with which these decisions needed to be made. A broad temporal analysis of transitions highlights LTRC transitions as a process of cumulative family disempowerment connected to broader formal care structures alongside emphases on aging in place and familialism that characterize LTRC as the option of last resort.

Where would Canadians prefer to die? Variation by situational severity, support for family obligations, and age in a national study.

BACKGROUND: Death at home has been identified as a key quality indicator for Canadian health care systems and is often assumed to reflect the wishes of the entire Canadian public. Although research in other countries has begun to question this assumption, there is a dearth of rigorous evidence of a national scope in Canada. This study addresses this gap and extends it by exploring three factors that moderate preferences for setting of death: situational severity (entailing both symptoms and supports), perceptions of family obligation, and respondent age. METHODS: Two thousand five hundred adult respondents from the general population were recruited using online panels between August 2019 and January 2020. The online survey included three vignettes, representing distinct dying scenarios which increased in severity based on symptom management alongside availability of formal and informal support. Following each vignette respondents rated their preference for each setting of death (home, acute/intensive care, palliative care unit, nursing home) for that scenario. They also provided sociodemographic information and completed a measure of beliefs about family obligations for end-of-life care. RESULTS: Home was the clearly preferred setting only for respondents in the mild severity scenario. As the dying scenario worsened, preferences fell for home death and increased for the other options, such that in the severe scenario, most respondents preferred a palliative care or hospice setting. This pattern was particularly distinct among respondents who also were less supportive of family obligation norms, and for adults 65 years of age and older. CONCLUSIONS: Home is not universally the preferred setting for dying. The public, especially older persons and those expressing lower expectations of families in general, express greater preference for palliative care settings in situations where they might have less family or formal supports accompanied by more severe and uncontrolled symptoms. Findings suggest a) the need for public policy and health system quality indicators to reflect the nuances of public preferences, b) the need for adequate investment in hospices and palliative care settings, and c) continuing efforts to ensure that home-based formal services are available to help people manage symptoms and meet their preferences for setting of death.

Applying the concept of structural empowerment to interactions between families and home-care nurses.

Interpretations of family carer empowerment in much nursing research, and in home-care practice and policy, rarely attend explicitly to families' choice or control about the nature, extent or length of their involvement, or control over the impact on their own health. In this article, structural empowerment is used as an analytic lens to examine home-care nurses' interactions with families in one Western Canadian region. Data were collected from 75 hrs of fieldwork in 59 interactions (18 nurses visiting 16 families) and interviews with 12 nurses and 11 family carers. Generally, nurses prioritized client empowerment, and their practice with families appeared oriented to supporting their role and needs as carers (i.e. rather than as unique individuals beyond the caring role), and reinforcing the caring role through validation and recognition. Although families generally expressed appreciation for these interactions, a structural empowerment lens illustrates how the broad context of home care shapes the interpretation and practice of empowerment in ways that can, paradoxically, be disempowering for families. Opportunities to effectively support family choice and control when a client is being cared for at home are discussed.

Fear, Defensive Strategies and Caring for Cognitively Impaired Family Members.

One topic rarely addressed in the literature on older adults and interpersonal violence is the violence that can be experienced by family carers in relationship with a person living with cognitive impairment. This violence tends to remain hidden and is rarely framed as intimate partner violence. We examine how situations of intimidation and violence invoked fear in family carers and how they interpreted and reacted to these circum- stances. Interview and diary data were collected from family members who had previously or were currently experiencing some form of aggression in caring for someone with cognitive impairment or dementia. Drawing on discussions of fear and applying the analytic lens of defensive strategies, we explore how these carers responded to situations of intimidation and violence.

The Emotional Labor of Personal Grief in Palliative Care: Balancing Caring and Professional Identities.

The paid provision of care for dying persons and their families blends commodified emotion work and attachments to two often-conflicting role identities: the caring person and the professional. We explore how health care employees interpret personal grief related to patient death, drawing on interviews with 12 health care aides and 13 nurses. Data were analyzed collaboratively using an interpretively embedded thematic coding approach and constant comparison. Participant accounts of preventing, postponing, suppressing, and coping with grief revealed implicit meanings about the nature of grief and the appropriateness of grief display. Employees often struggled to find the time and space to deal with grief, and faced normative constraints on grief expression at work. Findings illustrate the complex ways health care employees negotiate and maintain both caring and professional identities in the context of cultural and material constraints. Implications of emotional labor for discourse and practice in health care settings are discussed.

What family caregivers learn when providing care at the end of life: a qualitative secondary analysis of multiple datasets.

OBJECTIVE: Although growing numbers of family members provide end-of-life care for dying persons, caregivers frequently report lacking essential information, knowledge, and skills. This analysis explicates what family members learn during the process of providing end-of-life care. METHOD: Four qualitative interview studies of family caregivers to those at the end of life (n = 156) formed the basis of a secondary data analysis. RESULTS: Thematic and cross-comparative analyses found three general kinds of learning that were described-knowledge about: (1) the situation and the illness (including what to expect), (2) how to provide care, and (3) how to access help. Learning gaps, preferences, and potential inequities were identified. Further, in some instances, participant talk about "learning" appears to reflect a meaning-making process that helps them accept their situation, as suggested by the phrase "I have had to learn." SIGNIFICANCE OF RESULTS: Findings can inform the development of individualized educational programs and interventions for family caregivers.

Legitimising and rationalising in talk about satisfaction with formal healthcare among bereaved family members.

While there is a fair amount of knowledge regarding substantive features of end of life care that family members desire and appreciate, we lack full understanding of the process whereby family members formulate care evaluations. In this article we draw on an analysis of interview data from 24 bereaved family members to explicate how they interpret their experiences and formulate evaluations of end of life care services. Most participants wove between expressing and legitimising dissatisfaction, and qualifying or diffusing it. This occurred through processes of comparisons against prior care experiences and expectations, personalising (drawing on personal situations and knowledge), collectivising (drawing on conversations with and observations of others) and attempting to understand causes for their negative care experiences and to attribute responsibility. The findings suggest that dissatisfaction might be diffused even where care is experienced negatively, primarily through the acknowledgement of mitigating circumstances. To a lesser extent, some participants attributed responsibility to the 'system' (policy and decision-makers) and individual staff members. The findings are discussed in relation to the theoretical understanding of satisfaction and evaluation processes and how satisfaction data might inform improvements to care quality.

"Uncivilized children" or "victims of dementia": Interpretations of aggression in older assisted living tenants.

This study explores interpretations of interpersonal aggression involving older adults, through an analysis of semi-structured interview data from 13 assisted living (AL) tenants and 19 AL service and/or care workers. Differing relations (tenant-tenant and tenant-worker) shape the kinds of tenant actions experienced as problematic and/or aggressive. Tenants and workers invoke communal living, aging, and dementia as explanatory frames, in part to mitigate victimization experiences through normalization and neutralization. This was more prominent among workers, who are less able to enact empowering responses as they sought to keep working in difficult circumstances. Structural constraints, and the power and social hierarchies that contribute to victimization, generate interpretive responses that obscure fulsome and contextualized understandings of the problem while further reinforcing oppressive discourses including a sense of the inevitability of aggression in older adults-especially those living with dementia.

Cette étude explore les interprétations de l'agression interpersonnelle impliquant des adultes plus âgés, à travers une analyse des données d'entretiens semi-structurés de 13 locataires de résidences assistées (RA) et de 19 travailleurs de services et/ou de soins RA. Des relations différentes (locataire-locataire et locataire-travailleur) façonnent les types d'actions des locataires vécues comme problématiques et/ou agressives. Les locataires et les travailleurs invoquent la vie en communauté, le vieillissement et la démence comme cadres explicatifs, en partie pour atténuer les expériences de victimisation par la normalisation et la neutralisation. Ce phénomène est plus marqué chez les travailleurs, qui sont moins à même d'adopter des réponses autonomisantes lorsqu'ils cherchent à continuer à travailler dans des circonstances difficiles. Les contraintes structurelles, ainsi que le pouvoir et les hiérarchies sociales qui contribuent à la victimisation, génèrent des réponses interprétatives qui obscurcissent les compréhensions complètes et contextualisées du problème tout en renforçant les discours oppressifs, y compris le sentiment de l'inévitabilité de l'agression chez les personnes âgées - en particulier celles qui vivent avec la démence.

Articulating the role of relationships in access to home care nursing at the end of life.

In this article, we draw on data collected from two samples of home care nurses to examine how relationships between nurses and family caregivers intersected with access to palliative home care nursing services. Participants referred to relationships as important for their practical benefits and for access to care: good relationships enhanced the nurse's ability to assess clients and families and fostered the family's trust in the nurse's care. Although emphasizing the need to build and maintain relationships (often requiring time), participants simultaneously referred to beliefs about the need to control the personal emotions invoked in relationships so as to ensure appropriate access for clients and families. Future research should further explore how the organizational and resource context, and the culture of palliative care, shape nurses' beliefs about relationships in their practice, the nature and types of relationships that can develop, and both client and family caregivers' access to care.

An exploration of empowerment discourse within home-care nurses' accounts of practice.

In this study, we explore how client and family caregiver 'empowerment' is interpreted by home-care nurses talking about their practice with palliative (and to a lesser extent, non-palliative) clients and families. We draw on secondary analysis of qualitative data collected through in-person interviews with 27 home-care nurses from a western Canadian health authority. First, we illustrate how the practice ideal of empowerment, in the sense of 'respecting autonomy and choices', can be understood as reflecting home-care nurses' needs to mitigate the emotional impact of feeling unable to effectively help palliative clients/families. Then, we illustrate how the practice ideal of empowerment, in the sense of 'promoting independence', can be understood to accomplish the need to shift responsibility for particular care tasks to clients and family members. Lastly, home-care nurses, talk about 'promoting choices' is also investigated. 'Choice' was framed narrowly with respect to allowing palliative clients and families to determine visit time and frequency. Findings are discussed in relation to the concept of 'responsibilization'.

Stories of violence and dementia in mainstream news media: Applying a citizenship perspective.

In this article, we analyze how mainstream news media frames violence in relation to dementia and the consequences of different frames for people living with dementia and their carers. Conceptually, the goal is to bring literature on citizenship and aggression into dialog with each other. Empirically, a total of 141 regional and national English-language mainstream Canadian news media articles (2008-2019) with a focus on dementia, violence, and aggression were analyzed. Analytically, we examine how different actors are portrayed as victims or perpetrators; how their histories (identities, belonging, and exclusion) are told; how dementia is used to explain events; and what types of expert knowledge and authorities are introduced to make sense of stories of violence in relationships of care. Our analysis points to the implications of media narratives for people with dementia as well as carers and researchers seeking to address stigma and call for change.

Aggression and Older Adults: News Media Coverage across Care Settings and Relationships.

Systematic, in-depth exploration of news media coverage of aggression and older adults remains sparse, with little attention to how and why particular frames manifest in coverage across differing settings and relationships. Frame analysis was used to analyze 141 English-language Canadian news media articles published between 2008 and 2019. Existing coverage tended towards stigmatizing, fear-inducing, and biomedical framings of aggression, yet also reflected and reinforced ambiguity, most notably around key differences between settings and relations of care. Mainstream news coverage reflects tensions in public understandings of aggression and older adults (e.g., as a medical or criminal issue), reinforced in particular ways because of the nature of news reporting. More nuanced coverage would advance understanding of differences among settings, relationships, and types of actions, and of the need for multifaceted prevention and policy responses based on these differences.

Interviewing family caregivers: implications of the caregiving context for the research interview.

Family caregiving tends to involve strong and often competing emotional experiences. Most of our knowledge of caregiving stems from interview research, much of it cross-sectional in nature. In this article we explore the implications of interviews as a research method for understanding caregiving. Specifically, we address difficulties in interpreting participants' talk about caregiving when this talk is simultaneously an articulation of experience and an attempt to cope with that experience. Either uncritically accepting accounts as reflective of experience, without considering the role of coping, or making assumptions about the success of caregiver coping in this context, might be erroneous. Our own experiences of interviewing family caregivers in different research projects will be drawn upon as examples. We conclude by questioning the ability to draw conclusions about caregiving and/or caregiver coping based solely on interview research, and call for greater integration of observational and longitudinal methods in family caregiving research.

Palliative family caregivers' accounts of health care experiences: the importance of "security".

OBJECTIVE: When providing care for a loved one with a terminal illness, family members often look to health care providers for guidance and expertise. The objective of this study is to explore family caregiver accounts of their experiences within the health care system and with individual providers. METHODS: A thematic analysis of secondary qualitative data was performed. Data are from a subsample of bereaved and current family caregivers (N = 31) in a prior study of coping in end-of-life cancer situations. Data from these participants referring to experiences with health care providers was thematically coded and the concept of "security" was used as an analytic lens to facilitate conceptual development and exploration. RESULTS: Considered together, the findings can be viewed as manifestations of a need and desire for security in palliative family caregiving. Specifically, family caregivers' accounts illustrate the importance of feeling secure that health care services will be provided by competent professionals; feeling secure in their timely access to needed care, services, and information; and feeling secure in their own identity and self-worth as a caregiver and individual. In addition, the findings suggest a conceptualization of security that extends beyond trust in individuals to include a generalized sense of institutional trust in the health care system. SIGNIFICANCE OF RESULTS: The concept of security moves beyond description of individual satisfaction or dissatisfaction with health care to identify a common, foundational need underlying such evaluations. Further empirical research is needed that explicitly focuses on caregivers' experiences of security and insecurity in the domains identified in this article. This will contribute to theory building as well as assist in identifying the causes and consequences of security.

Carers as System Navigators: Exploring Sources, Processes and Outcomes of Structural Burden.

BACKGROUND AND OBJECTIVES: Structural features of formal care systems influence the amount, difficulty, and complexity of what carers do as they interface with those systems. In this study, we explored how carers navigate health and social care systems, and their experiences of structural burden related to features such as complexity and fragmentation. RESEARCH DESIGN AND METHODS: This qualitative descriptive inquiry drew on data from in-person interviews with 32 carers of older adults, which were analyzed first using inductive thematic analysis and then using structural burden as a conceptual lens. RESULTS: Participant accounts revealed how navigating formal systems on behalf of older adult family members can exact considerable demands on carers in terms of time investment and emotional energy. In this way, care systems exacerbate the stress and structural burden experienced by carers, even when formal services alleviate other forms of carer burden. DISCUSSION AND IMPLICATIONS: Our findings contribute to knowledge of how the structural context of formal services shapes carer experiences and outcomes. To promote equity and prevent burden, system navigation work should be considered as a public, structural issue, rather than an individual-level problem of skills and learning.

Responding the "Wrong Way": The Emotion Work of Caring for a Family Member With Dementia.

BACKGROUND AND OBJECTIVES: Although it is generally acknowledged that the changing behaviors of some people living with dementia can be emotionally exhausting for family members, there has been little research on how carers actually interpret and manage their emotional responses when interacting with persons with dementia in context and over time. Applying the concept of emotion work, this analysis examines when and where carers feel they are responding "the right way" to their kin and when and where they resist normative emotions around family care. RESEARCH DESIGN AND METHODS: Semi-structured qualitative interviews (N = 20) and diaries (N = 11) were conducted with, and collected from, family carers in Manitoba, Canada to explore how they negotiate their emotions and emotional displays when caring for a family member whose behaviors are changing. RESULTS: Carers expressed feelings of frustration, anger, and resentment and identified putting on a positive attitude, putting the person with dementia first, protecting the person with dementia, and avoiding conflict and arguing as the "right way" to respond to these feelings. They identified challenges responding the "right way," however, in relation to household chores, and situations that also involved isolation, fear, verbal aggression, and fatigue. DISCUSSION AND IMPLICATIONS: Programs and policies must recognize the complex emotion work of family carers. There is a need for more nuanced education materials, support with household tasks, inclusion of carers' emotional needs in transition planning, and support for carers to exit the caring role when necessary.

Caring about dying persons and their families: Interpretation, practice and emotional labour.

The importance of emotional support for dying persons and their families has been well established, yet we know less about how care workers understand emotional processes related to death and dying, or how these understandings are connected to care practices and emotional labour at the end of life. The aim of this study was to explore how healthcare workers interpret and respond to emotional needs of dying persons and their families. Qualitative data were collected between 2013 and 2014 through in-depth, in-person interviews with 14 nurses and 12 healthcare aides in one Western Canadian city. Transcripts were analysed using an inductive, interpretive thematic coding approach and the analytic lens of emotional labour. Dominant interpretive frames of a "good death" informed participants' emotionally supportive practice. This included guiding patients and families to "open up" about their emotions to activate the grief process. There was concern that incomplete grieving would result in anger being directed towards care staff. The goal of promoting emotional sharing informed the work of "caring about." Although palliative philosophies opened up moral and professional space for "caring about" in the context of organisational norms which often discouraged these practices, the tension between the two, and the lack of time for this work, may encourage surface expressions rather than authentic emotional care.

Defining community boundaries in health promotion research.

PURPOSE: A means for integrating subjective experience in the operationalization of community boundaries is described and examined, and a community typology incorporating both psychosocial and structural resources is developed and applied. DESIGN: Small-area sense of belonging was used to delineate broader community boundaries, which were compared with administrative boundaries. Community differences on participation and health were analyzed by using analysis of variance and post hoc tests. SETTING: Data were from face-to-face interviews with residents of a relatively disadvantaged area of a medium-sized Canadian city. SUBJECTS: A sample of 910 individuals was drawn from a population listing of those aged 35 to 65 years in the project area (44% response rate). MEASURES: Measures include sense of belonging; income; community participation; and mental, physical, and perceived health. RESULTS: Data revealed the similarity of community boundaries based on sense of belonging with administrative boundaries. The communities differed significantly in income, community activities attended, and two health measures. The typology indicated the community rich in both income and sense of belonging had higher participation and health than did communities low in both or with mixed resources. CONCLUSIONS: Psychosocial indicators can be used to delineate community boundaries, which may be similar to administrative boundaries. A typology including both psychosocial and structural components can be a helpful preliminary step in interpreting area differences.

Who wants to be involved? Decision-making preferences among residents of long-term care facilities.

While the benefits of participating in care or medical decision making are widely reported, research on decision-making participation preferences usually reveals some portion of individuals who do not want to be involved. Data collected through structured, in-person interviews with 100 residents of six long-term care (LTC) facilities in Victoria, British Columbia, were used to examine participation preferences with respect to four types of care decisions (bedtimes, medication choice, room transfer, and advance directives), as well as predictors of these preferences. Residents with higher levels of formal education, a greater number of chronic conditions, and greater confidence about the worth of their input tend to prefer more active involvement in decision making. This research also suggests that predictors of preference for independent control over decision making (active involvement) differ from predictors of preference for joint or shared decision making. Implications for the empowerment of LTC facility residents and the meaning of decision-making involvement in these environments are discussed.