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Understanding the temporal trends in the place of death among patients in receipt of home‐based palliative care can help direct health policies and planning of health resources. This paper aims to assess the temporal trends in place of death and its determinants over the past decade for patients receiving home‐based palliative care. This paper also examines the impact of early referral to home‐based palliative care services on patient's place of death. Survey data collected in a home‐based end‐of‐life care program in Toronto, Canada from 2005 to 2015 were analysed using a multivariate logistic model. The results suggest that the place of death for patients in receipt of home‐based palliative care has changed over time, with more patients dying at home over 2006–2015 when compared to 2005. Also, early referral to home‐based palliative care services may not increase a patient's likelihood of home death. Understanding the temporal shifts of place of death and the associated factors is essential for effective improvements in home‐based palliative care programs and the development of end‐of‐life care policies. [ABSTRACT FROM AUTHOR]

Hoarded homes can pose a threat to public safety, with heightened risks of fire hazards, pest infestations and noxious odours in both the home and neighbouring dwellings. Communities across North America are responding to these public safety concerns through a harm reduction approach. This descriptive study explores the implementation and outcomes of the City of Vancouver's approach involving a partnership between fire prevention and public health. Data were collected from the team's 2016–2018 case tracking systems, consisting of health records and team intervention record, as well as notes taken from case briefing meetings. Study objectives included describing the intervention model, providing descriptive statistics on clients and their clutter volume, the interventions undertaken, and exploring predictors of clutter volume and case outcome through exploratory analyses. The sample included 82 cases involving severely hoarded conditions or more moderate hoarding conditions paired with additional client vulnerabilities (e.g. health conditions, frailty). Results from paired samples t‐tests and regression analysis, suggest the Hoarding Action Response Team's (HART) model of a community‐based intervention for hoarding was associated with clutter reduction and tenancy preservation. HART successfully maintained engagement with most clients, and most cases were closed within six home visits. Despite these successes, the team dealt with several barriers including client avoidance and limited resources. This paper provides guidance for communities who are working to develop a coordinated response to problems associated with hoarding and begins to establish expectations for what can be achieved through a community‐based hoarding intervention model. [ABSTRACT FROM AUTHOR]

Despite efforts to acknowledge diversity among unpaid caregivers, Canadian research, advocacy, practice, and policy tend to be based in and to reproduce dominant social and institutional expectations and assumptions about who provides unpaid support and why, and what this support looks like. The objective of thtudinal, qualitative research study. In that study, qualitative case study interviews were conducted with twelve home care clients, their identified family or friend caregiver, home care aide, case coordinator, and agency supervisor (129 interviews in total). Case study profiles compiled over time generated deeper information about the availability and capacity of informal sources of support for these clients, which prompted abductive analysis in relation to dominant assumptions typically made about caregivers in research, policy, and practice. Specifically, only one case (participant) had a caregiver whose profile closely matched dominant conceptualizations. In the remaining eleven cases, we found situations wherein: (a) caregivers grappled with physical or mental health challenges limiting their participation in care (sometimes meaning the client is themselves a caregiver, or the caregiver is also receiving home care services); (b) caregivers facing burnout sought to delimit their participation in care; (c) caregivers' participation was limited by older adults' reluctance to accept their help; (d) caregivers were largely unavailable, unreliable, or peripheral; or (e) client's unpaid support networks were diffuse without a clearly central or identifiable "caregiver." Findings are used to nuance and problematize widely held assumptions about caregivers, particularly their availability and capacity. Discussion highlights the need for research, policy, and programs related to unpaid caregiving to better reflect the lived realities of this support for older adults and often overlooked sources of diversity in caregiver circumstances and roles. [ABSTRACT FROM AUTHOR]

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]

This paper reports qualitative findings from a pilot study that explored the lesbian, gay, bisexual, transgender and queer ( LGBTQ) education needs of home-care service providers working in one large, urban Canadian city. The pilot study builds upon research that has documented barriers to health services for diversely situated LGBTQ people, which function to limit access to good-quality healthcare. LGBTQ activists, organisations and allies have underscored the need for health provider education related to the unique health and service experiences of sexual and gender minority communities. However, the home-care sector is generally overlooked in this important body of research literature. We used purposeful convenience sampling to conduct four focus groups and two individual interviews with a total of 15 professionally diverse home-care service providers. Data collection was carried out from January 2011 to July 2012 and data were analysed using grounded theory methods towards the identification of the overarching theme, 'provider education' and it had two sub-themes: (i) experiences of LGBTQ education; and (ii) recommendations for LGBTQ education. The study findings raise important questions about limited and uneven access to adequate LGBTQ education for home-care service providers, suggest important policy implications for the education and health sectors, and point to the need for anti-oppression principles in the development of education initiatives. [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]

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]

Moral distress occurs when one knows a morally correct action to take but feels powerless to act the way one believes is right. Moral distress has been studied in many contexts but there remains a gap in our understanding of the phenomenon as it manifests outside of hospital‐based settings. The aim of this study was to explore the nature of the moral distress experience among community‐based health and social care professionals working with older adults and their caregivers. Using a qualitative constructionist design, we interviewed 24 participants from a single health authority in southwestern Ontario, Canada. Participants were both urban and rurally based. Data were collected in the winter and summer of 2020 and analysed using Braun and Clarke's thematic analysis strategy. Three factors: reluctant clients, human resource shortages and system challenges, contributed to the creation of perceived morally precarious care plans, resulting in symptoms of moral distress. Study participants described frustration, guilt, anger, and grief at not being able to act consistently with their core values and provide the amount and/or quality of care their clients and unpaid caregivers deserved. We consider possible reasons for our finding that community service providers did not always respond to the consequences of moral distress symptoms in a manner similar to those in acute care contexts. Our findings suggest that study participants may have been able to cultivate moral resilience in the face of moral distress through the positive reframing of adversity and therefore maintain their overall sense of moral integrity. [ABSTRACT FROM AUTHOR]

Clinical reasoning (CR) is the cognitive process that therapists use to plan, direct, perform and reflect on client care. Linked to intervention efficiency and quality, CR is a core competency that occurs within an institutional context (legal, regulatory, administrative and organisational elements). Because this context can shape how community therapists think about their clients' care, its involvement in their CR could have a major impact on the interventions delivered. However, little is known about this involvement. Our study thus aimed to describe the elements of the institutional context involved in community therapists' CR. From March 2012 to June 2014, we conducted an institutional ethnography (IE) inquiry in three Health and Social Services Centres in Québec (Canada). We observed participants and conducted semi‐structured interviews with 10 occupational therapists. We also interviewed 12 secondary key informants (colleagues and managers) and collected administrative documents (n = 50). We analysed data using the IE process. Of the 13 elements of the institutional context identified, we found that four are almost constantly involved in participants' CR. These four elements, that is, institutional procedures, organisation's basket of services, occupational therapists' mandate and wait times for their services, restrictively shape CR. Specifically, occupational therapists restrict their representation of the client's situation and exploration of potential solutions to what is possible within the bounds of these four elements. In light of such restrictions on the way they think about their clients' care, therapists should pay close attention to the elements of their own institutional context and how they are involved in their CR. Because of its potentially important impact on the future of professions (e.g. further restrictions on professionals' role, reduced contribution to population health and well‐being), this involvement of the institutional context in CR concerns all professionals, be they clinicians, educators, researchers or regulatory college officers. [ABSTRACT FROM AUTHOR]

In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00CDN = $1.00USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference ( P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of costs borne by different stakeholders. [ABSTRACT FROM AUTHOR]

This exploratory quasi-experimental evaluation assessed the effectiveness of the use of a concrete discussion guide to promote organisation-wide application of a partnering approach to engage older home-care clients with chronic disease/disabilities as care partners. A post-test-only design with an independent pre-test sample was used to compare selected outcomes with those of standard in-home care. The theoretically informed discussion guide portrayed how to go about the process of empowering partnering by using language and open-ended conversational leads to construct partnering, partnering effort and health as a resource for everyday living through social interaction. The discussion guide was provided to all providers for use with all clients in one home-care programme in Ontario, Canada and this organisation was compared with a similar but geographically distanced organisation, also in Ontario. Seven hundred and ninety-one randomly selected clients (mean age = 72.5 years) receiving 3+ months of in-home care for chronic conditions/disabilities from the two home-care programmes between September 2007 and May 2010 completed a researcher-administered questionnaire at either baseline, 1 year or 2 years. Instruments included the Client's Partnering Experience, Health-Promoting Partnering Effort, a modified version of Locus of Authority in Decision-Making, the Medical Outcomes Survey Self-Rated Health Scale, Health and Social Services Utilization and a modified Functional Independence Measure. Analysis of covariance revealed that the use of the concrete discussion guide to promote organisation-wide application of a partnering approach achieved significantly greater client partnering experience and health-promoting partnering effort over time than did the usual approach to in-home-care interactions. Using the discussion guide enhanced client/provider partnering, hence, interdependence, contributing positively to promoting clients' health as a resource for everyday living. [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]

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]

Increasingly, jurisdictions are adopting universal assessment procedures and information technology to aid in healthcare data collection and care planning. Before their potential can be realised, a better understanding is needed of how these systems can best be used to support clinical practice. We investigated the decision-making process and information needs of home-care case managers in Ontario, Canada, prior to the widespread use of universal assessment, with a view of determining how universal assessment and information technology could best support this work. Three focus groups and two individual interviews were conducted; questioning focused on decision-making in the post-acute care of individuals recovering from a hip fracture. We found that case managers’ decisional process was one of a clinician–broker, combining clinical expertise and information about local services to support patient goals within the context of limited resources. This process represented expert decision-making, and the case managers valued their ability to carry out non-standardised interviews and override system directives when they noted that data may be misleading. Clear information needs were found in four areas: services available outside of their regions, patient medical information, patient pre-morbid functional status and partner/spouse health and functional status. Implications for the use of universal assessment are discussed. Recommendations are made for further research to determine the impact of universal assessment and information technology on the process and outcome of home-care case manager decision-making. [ABSTRACT FROM AUTHOR]

Healthcare policy reforms enacted through the 1990s explicitly endorsed expanded community care and enhanced equitable access to care. We examine end-of-life home-care service utilization during this time period. We are interested in trends in and predictors of utilization influencing receipt of service or total service use. This is a population-based, retrospective study of home-care utilization by adults 50 years of age and older in British Columbia, Canada, who died in the last 6 months of each year from 1991 to 2000 ( n = 98 327). Data were drawn from the British Columbia Linked Health Data resource; we examined both receipt and extent of care, using logistic and standard regression models. Independent variables included year of death, age, gender, area of residence and income quintile. Year of death was not significantly associated with receipt of home care in general. However, the odds of receiving home support services declined significantly over time, while annual home support hours increased. In contrast, receipt of home nursing increased, while annual home nursing visits did not change. Social factors frequently emerged as significant predictors of both receipt and extent of care. However, we found only limited evidence for interactions between these factors and year of death acting as determinants of receipt or extent of service. Results suggest that end-of-life home care services did not expand, but instead were reallocated and intensified over the 1990s. As well, there was little evidence to suggest enhanced equity in access to care. [ABSTRACT FROM AUTHOR]

The purpose of this study was to examine gender differences in spousal caregiving at the end of life. The primary research question was to determine gender differences in caregiver strain among spousal caregivers. Secondary research questions investigated included (i) the presence of gender differences among spousal caregivers in the duration of care provided; (ii) gender differences among spousal caregivers in formal service use and unmet service needs; and (iii) whether support to care recipients in activities of daily living varied according to the gender of the spousal caregiver. The study was conducted over a 2-year period (2000–2002) in south-central Ontario, Canada. The study sample included 283 informal spousal caregivers (198 females, 85 males) each of whom were caring for a terminally ill spouse at the time they participated in a cross-sectional telephone survey. The analysis showed that females reported a significantly greater level of caregiving strain than males ( t = –2.12, d.f. = 281, P = 0.035). When considering source of support in activities of daily living for the care recipient, differential assistance was noted on the basis of caregiver gender. Female caregivers had almost twice the odds of providing support in toileting-related tasks than male caregivers (odds ratio (OR) = 1.98, 95% confidence interval (CI) = 1.01–3.85, P = 0.044), while male caregivers had approximately twice the odds of providing support in mobility-related tasks (OR = 0.41, 95% CI = 0.21–0.81, P = 0.011). Care recipients who had a female caregiver had lower odds of receiving support from family and friends in tasks associated with personal care (OR = 0.17, 95% CI = 0.05–0.53, P = 0.002). To address gender differences in caregiving, a realistic home-based palliative care approach must take into account the importance of informal caregivers. [ABSTRACT FROM AUTHOR]

The present quantitative study evaluates the degree to which socioeconomic status (SES), as opposed to perceived need, determines utilisation of publicly funded home care in Ontario, Canada. The Registered Persons Data Base of the Ontario Health Insurance Plan was used to identify the age, sex and place of residence for all Ontarians who had coverage for the complete calendar year 1998. Utilisation was characterised in two dimensions: (1) propensity − the probability that an individual received service, which was estimated using a multinomial logit equation; and (2) intensity − the amount of service received, conditional on receipt. Short- and long-term service intensity were modelled separately using ordinary least squares regression. Age, sex and co-morbidity were the best predictors ( P < 0.0001) of whether or not an individual received publicly funded home care as well as how much care was received, with sicker individuals having increased utilisation. The propensity and intensity of service receipt increased with lower SES ( P < 0.0001), and decreased with the proportion of recent immigrants in the region ( P < 0.0001), after controlling for age, sex and co-morbidity. Although the allocation of publicly funded home care service was primarily based on perceived need rather than ability to pay, barriers to utilisation for those from areas with a high proportion of recent immigrants were identified. Future research is needed to assess whether the current mix and level of publicly funded resources are indeed sufficient to offset the added costs associated with the provision of high-quality home care. [ABSTRACT FROM AUTHOR]

Amidst projections of the increased care demands and expectations for home care, policy in this area demands urgent attention. Home care is inherently complex as it challenges us to deliberate fundamental issues of responsibility for care, and the limits of care for people in their most immediate contexts and needs. This research takes the form of a critical policy analysis of the interaction of the context, process and content of policy proposals in home care in a regional health system in one Canadian province. The method of study includes thematic and comparative analyses of perspectives derived from policy documents, and interviews with policy actors (decision-makers, healthcare providers, public advocates) regarding their perspectives of policy problems and processes. The content and process of policy in home care interact in important ways with political, economic, social and historical contexts. This critical analysis revealed that the emerging policy agenda in regional home care is one of medicalisation, which stands in contrast to the principles of primary health care, and potentially leads to further marginalisation of the most vulnerable. This contrast is characterised by tensions between the fundamental values of equity and efficiency, choice and universality, and public vis-à-vis individual responsibility for the provision of care. [ABSTRACT FROM AUTHOR]