This study focuses on understanding the experiences of bereaved South Asian family caregivers living in Canada. Findings suggest that South Asian caregivers face several challenges and that there is a need for a more culturally sensitive palliative approach to care. / The South Asian population faces several challenges when receiving palliative care, including language barriers, unawareness of resources, and poor cultural awareness among health care providers (HCP). However, little is known about the needs of South Asian family caregivers in Canada. The purpose of this study is to understand the experience of bereaved South Asian informal caregivers, who cared for a family member in their last year of life. An interpretive descriptive design was used. Eleven participants were recruited by referral through a community hospice and a community health centre. Participants were South Asian informal caregivers and at least two months bereaved. Audio-recorded one-on-one interviews were conducted followed by a thematic analysis of the transcripts. Five themes were identified to describe the experience of bereaved South Asian informal caregivers: transforming perceptions of life and death, the influence of culture on the experience; the challenges of being a caregiver; coping with the challenges of care-giving; and getting support. Caregivers expressed feeling a sense of duty to their family members and were reluctant to utilize long-term care homes or hospices. The perceived hierarchy of HCP roles also affected their experience. In reflecting on their experiences, caregivers had a deeper appreciation for life and were more willing to talk about death and dying. The experience of South Asian family caregivers is complex with several underlying cultural influences. This study has important implications in improving the delivery of culturally sensitive palliative care and developing supports that address the challenges experienced by caregivers in the South Asian community. / Thesis / Master of Science (MSc) / The South Asian community faces many challenges when receiving palliative care, including language barriers and health care providers (HCP) who do not understand the South Asian culture. However, little is known about the needs and experiences of South Asian family caregivers. In this study, South Asian caregivers of family members who recently died described their experience of being a family caregiver. Caregivers had a strong sense of duty to their family members and were against moving their family members into long-term care homes or hospices. Their understanding and views of HCPs’ roles affected their experiences. Caregivers also had more appreciation for life and wanted to talk about their wishes for their own death with their family members. The findings of this study can help improve the delivery of palliative care for the South Asian community and can help HCPs better support their South Asian patients and families.

Background. The consensus among Canadians with regards to end-of-life preferences is that with adequate support the majority prefer to live and die at home. Purpose. To compare quality indicator (QI) rates for home care clients receiving palliative and end-of-life care prior to and after the onset of the COVID-19 pandemic. Methods. A retrospective population-based cohort design was used. Sixteen QIs informed by existing literature and a preliminary set of QIs recently evaluated by a modified Delphi panel were compared. Data were obtained from the over 280-item interRAI PC instrument for Ontario home care clients for two separate cohorts: the pre-COVID (January 14th, 2019 to March 16th, 2020) and COVID cohort (March 17th, 2020 to May 18th, 2021). A propensity score analysis was used to match on 21 covariates, resulting in a sample size of 2479 unique interRAI PC assessments per cohort. Alternative propensity score methods were explored as part of a sensitivity analysis. Results. After matching the pre-COVID and COVID cohorts (using nearest neighbour matching), five of the 16 QIs had statistically-significant differences in the QI rates. The two alternative propensity score methods produced slightly different results with fewer statistically-significant differences between the cohorts. However, in examining the effect sizes, the results of all propensity score methods were found to be not clinically meaningful. High rates of the prevalence of shortness of breath with activity, no advance directives, and fatigue were observed in both cohorts and across all three propensity score methods. Discussion. This study is the first to examine differences in QI rates for home care clients receiving palliative and end-of-life care before and during COVID in Ontario. Key limitations in interpreting the results include a limited understanding of the typical variation in QI rates over time and reliance on the comparison of a single proportion (the QI) in judging potential differences in quality. Importantly, a strength of this study was that these QIs focused on outcomes of care and were mainly symptom-focused as aspects of high-quality care valued by home care clients and families and in contrast to previous studies focusing on structure and processes of care. These QIs also indicated how frequently quality concerns may be occurring for those receiving palliative and end-of-life home care. Conclusion. It appears that QI rates did not change over the course of the pandemic in this population. Future work should be directed to understanding the temporal variation in these QI rates, risk-adjusting the QI rates for further comparison among jurisdictions, provinces, and countries and in creating benchmarks to project acceptable rates of different QIs. / Thesis / Master of Science in Nursing (MSN)

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No / Fatigue is a complex symptom commonly experienced by people with life-limiting illnesses. It has been identified in patients with, for example, cancer, heart failure, respiratory conditions, acquired immunodeficiency syndrome and renal failure. It is often rated by patients as having a greater effect on quality of life than pain. This article will explore the manifestations and consequences of fatigue. It will propose a minimum standard for its assessment and management and describe the implementation and evaluation of an audit, conducted in a hospice environment, designed to evaluate achievement of this standard. Although this audit was carried out in a hospice setting, the aim of the article is also to raise awareness of fatigue in all healthcare settings and to improve the assessment of this debilitating symptom.

No / Depression in patients receiving palliative and end-of-life care is difficult to distinguish from grief and sadness. However, there are some important distinctions and it is a clinical condition that is treatable and should not be considered a necessary or normal part of the dying process. This article examines the nature of depression and describes the stress vulnerability model of depression, linking it to recent developments in the neurobiology of depression. It also discusses how to distinguish depression from other symptoms that patients may be experiencing.

No / This article presents a review of key issues around caring for people in the last hours and days of life. The aim is that community nurses will be able to support patients and families, and to provide and explain decisions and interventions to promote comfort and dignity based on current evidence.

No / Laura Middleton-Green, lecturer and researcher in palliative and end of life care, writes about how attitudes to death influence care of the dying.

Yes / The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.

No / Complete : FC 16. We aimed to develop a complex intervention to improve end of life care (EOLC) for people with advanced dementia and their carers. We collected data from 4 sources: literature review; qualitative data from health and social care professionals, carers and people with early dementia; quantitative data from people with advanced dementia and their carers; review of UK health and social care policy documents. Method and results: To develop the intervention we synthesised these data. 49 emerging statements were considered in workshops with health and social care professionals across UK to achieve consensus using the RAND Appropriateness Method (RAM) to develop components of the intervention. 1. Prior to workshops we sent invitees the RAM form consisting of 49 statements and asked them to rate these on a scale of 1-9 for appropriateness. 2. At the workshops statements rated as ‘uncertain’ or ‘inappropriate’ were discussed and all 49 items were rated again. 3. Analysis resulted in the retention of 29 statements rated as appropriate. 4. Post workshop attendees were sent the RAM form and asked to rate 29 statements for necessity. All 29 statements were rated as necessary and retained then mapped onto impact theories (Grol 2007) comprised of individual, social interaction, organisational or political/ economic context, and categorised as enablers and barriers for an intervention. Three core intervention components emerged: 1. Integrated systems and approaches to the delivery of careoperational plan 2. Education, training and support for health and social care professionals and carers - utilisation plan 3. Political and economic context dependent on reimbursement and contracting through CCG commissioning. Discussion: The next phase is to pilot components 1 and 2 of the intervention in a naturalistic experiment in one inner city and one suburban locality at different stages of development for services for EOLC for people with dementia and their carers.

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