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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]

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]

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]