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Migration has become a profound global phenomenon in this century. In Canada, uncoordinated policies, including those related to immigration, resettlement, employment, and government funding for health and social services, present barriers to immigrant women caregivers. The purpose of this paper is to share relevant insights from individual and group interviews with immigrant women family caregivers, service providers and policy influencers, and discuss these in relation to immigration, health and social policy, and programme trends in Canada. The present authors conducted individual interviews with immigrant women family caregivers ( n = 29) in phase 1, followed by two group interviews with women family caregivers ( n = 7), and two group interviews with service providers and policy-makers ( n = 15) in phase 2. Using an inductive approach, the authors employed thematic content data analysis. Immigrant women experienced barriers to health and social services similar to Canadian-born family caregivers, particularly those who have low incomes, jobs with limited flexibility and heavy caregiving demands. These immigrant women family caregivers avoided certain formal services for a variety of reasons, including lack of cultural sensitivity. However, their challenges were compounded by language, immigration and separation from family in the home country. The identified barriers to support reinforce the importance of modifying and expanding policies and programmes affecting immigrant women's ability to care for family members with illnesses or disabilities within the context of Canadian society. Participants recommended changes to policies and programmes to deal with information, transportation, language, attitudinal and network barriers. The various barriers to services and programmes which were experienced by immigrant women caregivers underscore the importance of reviewing policies affecting immigration, caregiving, and access to health and social services. Intersectoral collaboration among agencies is essential to reduce the barriers identified in the present study, and to establish services which are linguistically and culturally appropriate. [ABSTRACT FROM AUTHOR]

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As utilization of home care increases across Canada, questions are emerging concerning the extent to which home care expenses, many of which are not publicly covered, are borne by unpaid caregivers of home care recipients. In this systematic review, we review English-language literature published between 2001 and 2022 exploring the magnitude and sources of home care costs incurred by unpaid caregivers in Canada. Of particular interest were empirical, cost-of-illness studies that describe the implications of these costs across domains of financial risk, including caregivers' income level, employment status, and personal health. Following the screening of 492 studies derived across 6 databases (OVID Medline, CINAHL, PsycINFO, AMED, EconLit, and EMBASE), 24 studies were included in this review. Overall, few studies describe how home care expenses incurred by unpaid caregivers contribute to their financial risk. While some studies characterize the direct costs of caregiving incurred by caregivers, including out-of-pocket expenditure on transportation to medical appointments, respite care, home renovations, supplemental housekeeping, and prescription medications, limited studies attempt to estimate the magnitude of these expenses. Concerning financial risk, the literature is chiefly concerned with indirect costs of caregiving, including consequences on caregivers' employment (foregone wages). Findings from this literature review suggest further work is needed in Canadian context to document costs associated with unpaid home care provision. [ABSTRACT FROM AUTHOR]

Our purpose in this paper is to report on the frustrations and unmet needs of paid, formal caregivers and unpaid, family caregivers who together provide care to adults with disabilities and/or mental health issues. We conducted eight focus group interviews between November 2010 and June 2011 in two large, urban centres and one smaller centre in Western Canada. Four of our focus groups were with family members including adults with disabilities and/or mental health issues, their parents and their siblings, and four were with representatives from agencies providing support and services to adults with disabilities and/or mental health issues and their families. Data were collected from 23 family members and 24 agency representatives who responded to questions about successes and struggles in meeting, and collaborating to meet, care needs of adults with disabilities and/or mental health issues. Each focus group session was digitally recorded and transcribed; field notes were also taken and we thematically analysed data according to family versus agency perspectives of their successes and barriers in care provision and care collaboration. We found that family members desire greater and more effective support in enriching the lives of adults with disabilities and/or mental health issues and in preparing for age-related changes. Agency representatives are keenly aware of the needs and challenges faced by families, yet grapple with being effective collaborators with families of widely varying priorities and styles of care and collaboration. [ABSTRACT FROM AUTHOR]

This study examines the gender differences in Chinese-Canadian family caregivers providing care to elderly Chinese care receivers. A random sample of 339 Chinese-Canadian caregivers for elderly care receivers completed a telephone survey. Most of the Chinese family caregivers were females. No major gender differences were reported in the amount and types of caregiving tasks. The level of caregiving burden and predictors were generally similar for both gender groups. Contrary to common belief that sons and daughters-in-law are the key family caregivers in the Chinese culture, the daughters played a more important role in family caregiving. In addition to providing support and services to Chinese female caregivers, strategies to enhance Chinese males' involvement in family caregiving are needed and discussed in the paper. [ABSTRACT FROM AUTHOR]

This paper reviews the literature to identify barriers experienced by Canadian cancer patients and families when trying to arrange for or achieve a home death. A comprehensive literature search was performed across several databases to locate relevant studies. Barriers were defined as amendable determinants which may be changed with appropriate resources and policies. Four major barriers were identified: inadequacy of support services, insufficiency of family caregivers, inadequacy of home locations and sizes, and discontinuity of care by family physicians. [ABSTRACT FROM AUTHOR]

There is a global need to understand how the quality of home care for persons living with dementia is perceived by their most frequent formal caregivers, personal support workers (PSW), especially given the expected rise in the prevalence of dementia. The aim of this study was to explore the perceptions of PSW regarding what constitutes quality home care for persons with dementia. Qualitative content analysis was undertaken to interpret semi‐structured interviews with PSW (N = 15). Study findings indicate that quality home care is perceived to be (1) person‐centered; (2) provided by PSW with dementia‐specific education and training; (3) facilitated by specific PSW experiences, abilities and characteristics; (4) enhanced by accessible information, services and education for persons with dementia and their caregivers; (5) provided by an inclusive dementia care team; and (6) facilitated by organisational supports and respect. However, findings also indicated differences in what PSW perceive as quality home care versus what they are experiencing when providing care for persons with dementia. Participants advocated for increased supports to them through ongoing dementia‐specific education and training, increased teamwork among care providers, increased wages, sufficient and qualified staffing, and increased exchange of client information. The findings highlight the importance of exploring front‐line workers' perspectives and how they can help revise current healthcare policies and inform future policy development. [ABSTRACT FROM AUTHOR]

Abstract: The recent growth of the home care sector combined with societal and demographic changes have given rise to concerns about the adequacy of the supply of family and friend caregivers. Potential caregivers face competing time pressures that pull them in the direction of the labour market on one hand, and towards unpaid caregiving duties on the other. This paper examines the influence of unpaid caregiving on the labour supply of a cohort of working-aged caregivers in Canada, with particular emphasis on caregiving intensity. Results suggest that caregivers are heterogeneous in both their caregiving inputs and associated labour market responses, thereby underscoring the importance of controlling for caregiving intensity when measuring labour supply. The negative influence of primary caregiving on labour supply appears to be at the level of labour force participation, rather than on hours of work or wages. [Copyright &y& Elsevier]

Purpose: This paper reports on Canadian research that examined the cost effectiveness of home care for seniors as a substitute for long-term institutional services. Design and Methods: Two Canadian cities were included in the research: Victoria, British Columbia, and Winnipeg, Manitoba. The research computes the costs of formal care and informal care in both settings and ensures comparable groups of clients in both settings by comparing individuals at the same level of care. Results: The results reveal that costs were significantly lower far community clients than far facility clients, regardless of whether costs only to the government were taken into account or whether both formal and informal costs were taken into account. When informal caregiver time is valued at either minimum wage or replacement wage, there was a substantial jump in the average annual costs for both community and facility clients relative to when informal caregiver time was valued at zero. Implications: Nevertheless, the results reveal that home care is significantly less costly than residential care even when informal caregiver time is valued at replacement wage. [ABSTRACT FROM AUTHOR]

Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end‐of‐life at home. Data were collected from in‐depth interviews (n = 25), observations of agency home care visits (n = 9) and analyses of policy and home care agency documents (n = 12). Employing a critical feminist lens, a gender‐based analysis revealed that structural discourses emphasizing an artificial divide between public and private spheres constructed end‐of‐life at home as private and apolitical. Associated with care of home and family, women were most impacted by these public/private discourses underpinning neoliberal values of cost‐efficiency. Findings suggest that a critical perspective is needed to assist policy makers and healthcare providers to view how caregiver experiences are shaped by structures that control the availability of resources. Thus, instead of focusing on caregivers' deficits, interventions should be directed at the social, political and economic conditions that shape gendered experiences. [ABSTRACT FROM AUTHOR]

Background: Dementia is common, particularly among older adults, and is one of the major causes of dependency later in life. We sought to provide an overview and comparison of key services related to dementia care as the disease progresses in three large Canadian healthcare centres.Methods: We identified family physicians, geriatric specialists, and dementia case managers from three major population centres in Canada with universal healthcare coverage. Using a standardized longitudinal dementia case vignette, participants were interviewed on services they would provide at each stage of the disease. We used principles of content analysis to generate codes and identify themes; appropriate time frames from the vignette fitting the necessary provision of services were derived from the Canadian consensus statement and determined in consultation with clinical experts. Proportions of participants that identified dementia-related care services were analyzed at each time point of the vignette using chi-square tests.Results: Thirty-four healthcare providers from Calgary (Alberta), Edmonton (Alberta), and Ottawa (Ontario) participated. Review of our data identified seven overarching themes of dementia-related care services. Services provided in the community setting include future planning and related services, educational and social support services, and home care and respite services. Although all providers consistently identified educational and social support services (e.g. the Alzheimer Society) within the appropriate time frame, the provision of other services was variable. The proportion of providers reporting potential access of future planning services was significantly different across the three sites (Calgary, 91.7 %; Edmonton; 58.3 %; and Ottawa, 30.0 %), p = 0.012. Also, the proportion of providers that identified day program services were significantly different across the three sites (Calgary, 100.0 %; Edmonton, 91.7 %; and Ottawa, 60.0 %), p = 0.023 according to a chi-square test.Conclusions: We found important types of variability in service delivery among different regions in Canada for a typical patient with dementia and their family caregiver. Health systems can be calibrated by aligning services from different settings to appropriate time points in the vignette, which illustrates the dynamic course of service delivery and opportunities for improvement throughout the disease trajectory. [ABSTRACT FROM AUTHOR]

Using data from Statistic Canada's General Social Survey Cycle 21 ( GSS 2007), this study explores whether differences exist in the impacts of care-giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end-of-life ( EOL) care ( n = 471); (ii) those providing long-term care (more than 2 years) for someone with a chronic condition or long-term illness ( n = 2722); and (iii) those providing short-term care (less than 2 years) for someone with a chronic condition or long-term illness ( n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care-giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of 'fair or poor' self-assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care-giving, more so than both short-term and long-term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care-giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long-term or short-term caregivers. This provides the evidence for the assertion that EOL care-giving is the most intense type of care-giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short-term and long-term caregivers. [ABSTRACT FROM AUTHOR]

Background: Health system restructuring coupled with the preference of patients to be cared for at home has altered the setting for the provision of palliative care. Accordingly, there has been emphasis on the provision of home-based palliative care by multidisciplinary teams of health care providers. Evidence suggests that these teams are better able to identify and deal with the needs of patients and their family members. Currently there is a lack of literature examining the predictors of palliative care service use for various professional service categories. Objective: The purpose of this study was to examine the predictors of the propensity and intensity of five main health service categories in the last three months of life for home-based palliative care patients. Design: This was a prospective cohort study. The predictors of service use were assessed using a two-part model, which treats the decision to use a service (propensity) and the amount of service use (intensity) as two distinct processes. Propensity was modeled using a logistic regression and intensity was modeled using ordinary least squares regression. Results: The results indicate that each service category emerged with a different set of predictor variables. Common predictors of health service use across service categories were patient age and functional status. The results suggest that a consistent set of predictors across service categories does not exist, and thus the determinants of access to each service category are unique. Conclusion: These findings will help case managers, health administrators, and policy decision makers better allocate human resources to palliative patients. [ABSTRACT FROM AUTHOR]

Disability scholars and activists argue that ‘care’ is a complex form of oppression and reject it as a term and concept. I explore the possibility of salvaging care from its oppressive medical and charitable legacies through a discussion of personal assistance. While not arguing for a return to terming personal assistance ‘care’, I argue care can be made accessible in policies and discussions of attendant services and in more general discussions related to care. Like the built environment, care requires ‘retrofitting’ as in updating existing structures to fully include disability perspectives. This requires redefining care as a complex tension. Accessibility also evokes the sense of ‘at hand’; keeping care at hand in policy discussions allows us to consider transformative feminist conceptualizations of care and captures intricate relationships between attendants and disabled people, including people with intellectual disabilities. Most importantly, accessible versions of care always acknowledge the oppressive legacies and coercive potentials of care. [ABSTRACT FROM PUBLISHER]

Although both family care and home support are considered essential components of home-based health-care, the experiences of family caregivers who have a relative in receipt of home support services are not well understood. Little is known about what aspects of home support services assist family caregivers or hinder them in their caregiving. This study examines family member’s experiences of the home support services received by their elderly relatives. Based on a previous Canadian study of contributions in family caregiving, we developed a conceptual model for understanding multiple contributions in caregiving. The present study used this conceptual model to guide the analysis of data from in-depth interviews with family caregivers ( N = 52), completed August 2007–April 2008, who have or had an older relative in receipt of home support services in British Columbia, Canada, in the previous 12 months. Verbatim transcripts were read, re-read and independently coded by three members of the research team to identify common themes. Themes relating to direct care (care provided directly to the elderly person) and assistive care (care provided to one caregiver by another) were identified. In discussing the direct care provided by workers, family members emphasised dissatisfaction with instrumental assistance provided by home support workers while also stressing the importance of affective assistance. In commenting about assistive care there were three key themes: caring together, care management, and quality assurance and monitoring. In conclusion, the important role of home support in providing relief for caregivers is highlighted and implications for caregiver policy are discussed. [ABSTRACT FROM AUTHOR]

One common myth about ethno-cultural minority family caregivers is that they do not use formal services. This study examined the intention of using home support and long-term care facilities by a random sample of 339 Chinese-Canadian family caregivers, using a modified version of the Andersen-Newman service utilization model. Filial piety, caregiving burden, care receivers, and health conditions are the common predictors identified. Filial obligation is most likely manifested through facilitating the care receivers to make use of the services needed, particularly for caregivers who reported a high level of caregiving burden. [ABSTRACT FROM AUTHOR]

In many Western welfare jurisdictions, publicly provided home care is being eroded and its provision increasingly individualized. These shifts are of a particular significance for older women, a group for whom supportive home care has been an important buttress against the social and physical jeopardies of old age. A longitudinal, qualitative study of such women in Ontario, Canada, spanned the implementation of managed competition in home care and a period of rapid privatization and service rationing. Study participants experienced cuts and, stemming from increasingly precarious employment conditions in the home care workforce, inconsistent care providers. These changes generated distress, insecurity, and isolation in participants' lives. This article explores how their complaints about insufficient care were silenced: by fear, hopelessness, and the cultural injunction to put a stoic and selfless face on the limitations of old age. Their accounts reveal how large material and discursive shifts and state restructuring come to penetrate identity, feeling, and speech. This examination of the silencing of complaint at home care's front lines reveals the cumulative effects of rationing; it also illuminates how, if heard, service users' voices can inform collective struggles to resist the degradation of home care and reposition older people in relation to the state. [ABSTRACT FROM AUTHOR]

Identifies the type of care provided by family caregivers of the terminally ill. Impact of the demands on the family caregiver; Interview of family caregivers from two community-nursing agencies in an urban region of the province of Ontario; Numbers of caregivers providing assistance in specific functional activities such as bathing, mobility, dressing and undressing.

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. [ABSTRACT FROM AUTHOR]

The authors comment on the lack of support for young caregivers in Canada. They describe the rising number of young caregivers in the country, as well as factors behind the increasing demand for family caregivers, including the aging of the Canadian population. They also discuss the prevalence of unpaid care among young caregivers and the risks they face when unsupported.