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There has been an increasing acknowledgement in the UK of the importance of recognising frailty as a condition that leaves older people vulnerable to dramatic, sudden changes in health triggered by seemingly small events. In policy, the approach to managing frailty is often an emphasis on staying well with limited consideration to frailty as an end-of-life phase. Meanwhile, discharge from hospital continues to be complex. Overstretched acute hospitals are juxtaposed with community and social services that struggle to keep up with the demand of those being discharged and the labelling of older people as "bed blockers" at the centre of delayed discharges. This paper reports a study underpinned by constructivist grounded theory methodology, with the aim of exploring the experiences and perceptions of stakeholders. Semistructured interviews were conducted with 57 participants including patients, their informal carer(s), community hospital staff, community health professionals, and care home managers. The core category of "the drive to discharge conveyor belt" was derived from data analysis. A significant finding of this study was that of the carer, their burden, and their intrinsic role in facilitating discharge, filling in gaps in services, coordinating services, and enabling the patient to stay at home, with little consideration of their choices or autonomy. The "drive to discharge" impacts older people, their informal carers, and health professional. This study suggests how they may be supported, through an ethical lens. [ABSTRACT FROM AUTHOR]

Current health and social care systems do not always meet the needs of the dying in our communities. As a result, patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care. Birth Doulas have been working with women during pregnancy and after birth for many years, and we are now seeing a new role, that of a Death Doula emerging in the end‐of‐life care space. How Death Doulas work within health and social care systems is not understood and we conducted a systematic review to explore the published literature to explore the role and potential implications for models of care delivery. Following the PRISMA recommendations, we searched the literature in January 2018 via bibliographic databases and the grey literature without search date parameters to capture all published literature. We looked for articles that describe the role/work of a death doula or a death midwife in the context of end‐of‐life care, or death and dying. Our search retrieved 162 unique records of which five papers were included. We analysed the papers in relation to relationship to health service, funding source, number and demand for services, training, licensing and ongoing support, and tasks undertaken. Death Doulas are working with people at the end of life in varied roles that are still little understood, and can be described as similar to that of "an eldest daughter" or to a role that has similarities to specialist palliative care nurses. Death doulas may represent a new direction for personalised care directly controlled by the dying person, an adjunct to existing services, or an unregulated form of care provision without governing oversight. [ABSTRACT FROM AUTHOR]

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 the widespread use of Health Care Support Workers (HCSWs) in providing palliative and end-of-life care, there is little information available about their contributions towards supporting patients who want to be cared for at home or to die at home. Between January and April 2011, a systematic review was conducted to address two questions: (i) What particular tasks/roles do HCSWs perform when caring for people at the end of life and their families to comply with their desire to remain at home?; (ii) What are the challenges and supporting factors that influence HCSWs' ability to provide palliative and end-of-life care in the community? Databases searched for relevant articles published between 1990 until April 2011 included CINAHL, EMBASE, PsychINFO, British Nursing Index, Web of Science, Medline and ASSIA. In total, 1695 papers were identified and their titles and abstracts were read. Ten papers met the eligibility criteria of the study. After the methodological quality of the studies was appraised, nine papers were included in the review. Judgements regarding eligibility and quality were undertaken independently by the authors. The findings indicate that HCSWs invest a great deal of their time on emotional and social support as well as on assisting in the provision of personal care. They are also involved in providing care for the dying, respite care for family members and offer domestic support. Although it is important to acknowledge the many positive aspects that HCSWs provide, the findings suggest three challenges in the HCSWs role: emotional attachment, role ambiguity and inadequate training. Support factors such as informal peer grief-support groups, sense of cohesiveness among HCSWs and task orientation enabled HCSWs to overcome these challenges. To conclude, induction and training programmes, a defined period of preceptorship, appropriate support, supervision and clearly defined role boundaries may be helpful in reducing the challenges identified in HCSWs' roles. [ABSTRACT FROM AUTHOR]

The needs of older lesbian and gay people regarding access and use of aged‐care services remain underresearched. This paper reports the findings of 33 qualitative interviews with older lesbian women and gay men about their perceptions and experiences of residential aged‐care and home‐based aged‐care services in Australia. The focus of this paper is their preparedness for using aged‐care services. The results highlight that participants had a number of concerns related to accessing residential‐care services in particular, including perceptions of a lack of inclusivity and concerns of potential for discrimination and hostility, loss of access to community and partners, decreased autonomy and concerns relating to quality of care and the potential for elder abuse. Participants noted a number of strategies they employed in avoiding residential‐care services, including the use of home‐care services, renovating the home for increased mobility, moving to locations with greater access to outside home‐care services, a preference for lesbian/gay‐specific housing and residential‐care options if available, and the option of voluntary euthanasia to ensure dignity and autonomy. Participants, on the whole, were hopeful that they would never require the use of residential‐care services, with some believing that having current good health or the support of friends could prevent this from happening. The findings suggest that older lesbian and gay people have a variety of concerns with aged‐care and may need additional support and education to improve their perceptions and experiences of services, whether these are needed presently or in the future. [ABSTRACT FROM AUTHOR]

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi‐structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio‐recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations. [ABSTRACT FROM AUTHOR]

With the increased attention and demand on community‐based palliative and end‐of‐life (EOL) care services comes the question of how to ensure their sustainability. Sustainability has three key attributes: acceptability, affordability and adaptability. Having established the acceptability and affordability of the community‐based service, this paper focussed on adaptability, as the remaining issue affecting long‐term sustainability. The aim of this study was to identify components of the palliative and EOL service which require adaptability to ensure long‐term sustainability for the service. A mixed methods approach was used for this study. Semi‐structured interviews were conducted with family members. Semi‐structured focus groups and interviews were held with health professionals. Patient data were included to describe frequency and nature of contacts. The results were analysed using descriptive analysis. The setting was a rural town in Victoria, Australia. Nine family members were interviewed, and 16 health professionals were interviewed or took part in a focus group. Patient data included 121 participants. Four themes were identified: the uniqueness of the patient, workforce issues, collaboration between services and symptom and pain management. All themes indicated that the palliative and EOL service faces challenges which may threaten the sustainability of the service and require adaptability. Families regard palliative and EOL care as special and valued, and appreciate the endeavour, care and support taken to assist their loved one to die with dignity regardless of the location and setting. With sufficient attention paid to the adaptability of the service, community palliative and EOL care service can become more sustainable, thus offering choice and dignity for people approaching the end of life. [ABSTRACT FROM AUTHOR]

The economic burden faced by family caregivers of people at the end of life is well recognised. Financial burden has a significant impact on the provision of family care-giving in the community setting, but has seen limited research attention. A systematic review with realist review synthesis and thematic analysis was undertaken to identify literature relating to the financial costs and impact of family care-giving at the end of life. This paper reports findings relating to previously developed approaches which capture the financial costs and implications of caring for family members receiving palliative/end-of-life care. Seven electronic databases were searched from inception to April 2012, for original research studies relating to the financial impact of care-giving at the end of life. Studies were independently screened to identify those which met the study inclusion criteria, and the methodological quality of included studies was appraised using realist review criteria of relevance and rigour. A descriptive thematic approach was used to synthesise data. Twelve articles met the inclusion criteria for the review. Various approaches to capturing data on the financial costs of care-giving at the end of life were noted; however, no single tool was identified with the sole purpose of exploring these costs. The majority of approaches used structured questionnaires and were administered by personal interview, with most studies using longitudinal designs. Calculation of costs was most often based on recall by patients and family caregivers, in some studies combined with objective measures of resource use. While the studies in this review provide useful data on approaches to capturing costs of care-giving, more work is needed to develop methods which accurately and sensitively capture the financial costs of caring at the end of life. Methodological considerations include study design and method of administration, contextual and cultural relevance, and accuracy of cost estimates. [ABSTRACT FROM AUTHOR]

Understanding how informal care impacts formal care utilisation for home‐based end‐of‐life patients is an important policy‐ and practice‐relevant question. This paper aims to assess the relationship between informal and formal home care among home‐based end‐of‐life patients and how this relationship has changed over the last decade and over the end‐of‐life trajectory. We focus on informal care provided by family members or friends, and three types of home‐based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home‐based end‐of‐life care programme in Ontario, Canada from 2005 to 2016, we build a two‐part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home‐based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home‐based end‐of‐life patients. Decision‐makers need to take into account the relationship between informal care and different types of formal services when introducing future policies. [ABSTRACT FROM AUTHOR]

Abstract: The ‘good death’ is one objective of palliative care, with many ‘good death’ viewpoints and research findings reflecting the urban voice. Rural areas are distinct and need special consideration. This scoping review identified and charted current research knowledge on the ‘good’ rural death through the perspectives of rural residents, including rural patients with a life‐limiting illness, to identify evidence and gaps in the literature for future studies. A comprehensive literature search of English language articles (no date filter applied) was conducted in 2016 (2 January to 14 February) using five library databases. Reference lists of included articles, recent issues of eight relevant journals and three grey literature databases were also hand‐searched. Twenty articles (for 17 studies and one systematic review) were identified after a two‐phase screening process by two reviewers, using pre‐determined inclusion criteria. Data from each study were extracted and charted, analysed using a thematic analysis of the included articles' content, and with a quantitative analysis of the scoping review. These papers revealed data collected from rural patients with a life‐limiting illness and family caregivers, rural healthcare providers, the wider rural community, rural community leaders and rural health administrators and policy makers. Rural locations were heterogeneous. Residents from developed and developing countries believe a ‘good death’ is one that is peaceful, free of pain and without suffering; however, this is subjective and priorities are based on personal, cultural, social and religious perspectives. Currently, there is insufficient data to generalise rural residents' perspectives and what it means for them to die well. Given the extreme importance of a ‘good death’, there is a need for further studies to elicit rural patient and family caregiver perspectives. [ABSTRACT FROM AUTHOR]

Pediatric palliative care (PPC) programs are essential in encompassing not only the affected children but also their family system and the healthcare and educational professionals involved. Despite the field's significance, there is a notable scarcity in current literature, which underscores the pressing need for further research into the attributes of PPC programs that effectively enhance the quality of life (QoL) for pediatric patients. This study particularly emphasizes the pivotal role of schools as key community resources within this framework, highlighting the crucial aspect of educational integration in PPC. Through a systematic review of relevant literature and applying stringent inclusion and exclusion criteria, we identified pertinent studies across various databases. Of these, 30 articles met our criteria and were subject to a thorough qualitative analysis. Our findings indicate that while PPC programs may vary in their methodologies, they consistently share certain core elements that significantly boost the QoL for pediatric patients. These include a holistic approach that addresses the physical, emotional, psychosocial, and spiritual facets of care; encourages the active involvement of the patient in decision-making processes; and ensures timely access to PPC services. Importantly, our analysis identified the critical role of educational settings in enhancing QoL, shedding light on the vital need for educational inclusion and the integration of schools into the broader spectrum of PPC services. The distinct individual perceptions of QoL and the varied international practices in PPC underscore the imperative to tailor successful strategies to specific local contexts, thereby fostering the global well-being of pediatric palliative care patients. [ABSTRACT FROM AUTHOR]

This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Māori, Pacific Island and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end-of-life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Māori, Pacific Island and Chinese elders. For Māori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide 'hands-on' care. The role of family in decision-making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in 'hands-on' palliative care and decision-making requires care staff to relinquish their role as 'expert provider'. Counter to the prioritisation of autonomy in Western health-care, collective decision-making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end-of-life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision. [ABSTRACT FROM AUTHOR]

Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. The present study addressed the following questions: (1) What are the lived experiences of people living with MND? (2) What are people's experiences of services? and (3) Can improvements to care be identified? A qualitative research design was adopted using semi-structured interviews. The topic guide was developed from existing literature. The study was based in three boroughs in London, UK. People living with MND and professionals were drawn from a database at King's College Hospital, and additionally, through‘snowball’ sampling. Nine people with MND, five carers/family members and 15 professionals took part in the interviews. These interviews were audio-taped, transcribed and checked for accuracy against the original recordings. Themes within the interviews were coded and grouped. The analysis was facilitated with the NVIVO computer software package. The findings are presented within three substantive groups: (1) the impact of MND on people's lives (the physical impacts of the illness, including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including methods of coping with the illness); (2) experiences of services (accessing service entitlements, information sources, professionals’ attitudes and approaches, and professionals’ knowledge and understanding of MND); and (3) suggestions for service change (better information and communication, including information on service entitlements; improved knowledge amongst professionals about MND; and some suggestions for service restructuring). This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs. The paper concludes with methodological considerations, the implications of the findings for practitioners and policy makers, and suggestions for further research. [ABSTRACT FROM AUTHOR]

This article investigates the challenges faced by those trying to develop ‘culturally competent’ palliative care for South Asian cancer patients in Luton, UK. It discusses the findings of a phenomenological study of service providers’ attitudes to and experiences of caring for South Asian patients. Ten semi-structured in-depth interviews were carried out with a range of staff who work in home and community-based palliative care settings, including nurses, community liaison personnel and representatives of non-statutory organisations. The authors begin by considering how these service providers construct ideas of cultural difference and how these relate to philosophies of palliative care. They then examine attempts to deal with cultural diversity in everyday practice, focusing in particular on the social context of care in the home. The paper considers the ways in which staff attempt to incorporate the cultural needs of patients, family, kin and community. Rather than criticising current working practices, the authors highlight the complexity of delivering culturally competent services from the perspective of those working directly with patients. In doing so, they contribute to ongoing debates about the development of anti-discriminatory practice in health and social care. [ABSTRACT FROM AUTHOR]

This paper reports an evaluation of a 3-year pilot community care project to extend ‘hospice standards’ of palliative care to nursing home residents in Nottingham. The evaluation involved two questionnaire surveys of all matrons of nursing homes with registered palliative care beds (39 and 43 matrons, respectively) and 35 interviews with a sample of local stakeholders selected to give a range of views regarding the project’s impact. The interview sample included nursing home matrons (10) and care staff (7); nursing home residents and their relatives (4); community nurses (3); members of the Health Authority and Social Services (6); and local palliative care experts (5). Other sources of data included referral forms, evaluation of training sessions and a reflective account given by the project coordinator. The analysis used descriptive statistics to summarize the quantitative data and an iterative procedure to generate themes from the qualitative data. The overall perception of the project’s impact was that it had helped to overcome the barriers that exist between NHS services and the independent sector. By providing assistance with individual care and access to specialist advice, equipment and training, the project was thought to have decreased the isolation experienced by staff and residents and improved equity of access to specialist palliative care for nursing home residents. Although it was widely agreed that the nursing home is an appropriate setting for palliative care, concern was expressed about the quality of care that can be given with mostly unqualified care staff. Ongoing needs for training and liaison between nursing homes and specialist palliative care services were identified. [ABSTRACT FROM AUTHOR]

This study explores the palliative care capacity of social workers in Flanders. First, it examines the frequency with which social workers in Flanders are currently performing palliative care tasks. Second, this study assesses their attitudes and competencies regarding the performance of these tasks. Third, as contextual factors also influence this performance, this study explores the level of appreciation experienced by social workers in Flanders. To achieve these objectives, a mixed-methods explanatory sequential design was used. Quantitative data were collected by distributing electronic survey questionnaires on QUALTRICS© to a theoretical sample of social workers in Flemish hospitals, community health clinics, nursing homes, home care, and health insurance services. A total of 499 social workers completed the survey in April and May 2021, of whom 352 met the eligibility criteria and were retained for analysis. Qualitative data were collected based on online focus groups between June and September 2021, in which a total of 24 social workers discussed the main survey results. Transcripts from the focus groups were analysed by using the framework method. The results indicate that the current palliative care capacity of responding social workers in Flanders is limited to tasks related to client assessment and referral, while their potential role extends beyond these tasks. With an expanded role, social workers would be better able to address the social dimensions of care, engage in politicising work, and, in turn, contribute to a holistic and multidimensional approach to palliative care. However, this study illustrates the need to increase the competencies and actual involvement of social workers in tasks associated with this expanded role. [ABSTRACT FROM AUTHOR]

Lesbian, gay, bisexual, transgender and gender diverse people, and queer people (LGBTQ people) are at increased risk of some chronic diseases and cancers. NSW Health palliative care health policy prioritises equitable access to quality care, however, little is known about community members' perspectives on palliative care. This study aimed to understand LGBTQ community views and preferences in palliative care in NSW. A community survey and follow‐up interviews with LGBTQ people in NSW were conducted in mid‐2020. A total of 419 people responded to the survey, with 222 completing it. Six semi‐structured phone interviews were conducted with participants who volunteered for follow‐up. The sample included LGBTQ people with varied levels of experience in palliative care. Thematic analysis was conducted on survey and interview data, to identify perceived barriers and enablers, and situate these factors in the socio‐ecological model of health. Some perceived barriers from community members related to considering whether to be 'out' (i.e., making one's sexual orientation and gender known to services), knowledge and attitudes of staff, concern about potential substandard care or mistreatment (particularly for transgender health), decision making, biological family as a source of tension, and loneliness and isolation. Perceived enablers related to developing and distributing inclusive palliative care information, engaging with community(ies), fostering inclusive and non‐discriminatory service delivery, ensuring respectful approaches to person‐centred care, and staff training on and awareness building of LGBTQ needs and issues. Most of the participants who had experienced palliative care recounted positive interactions, however, we identified that LGBTQ people require better access to knowledgeable and supportive services. Palliative care information should be inclusive and services respectful and welcoming. Particular consideration should be given to how services respond to and engage with people from diverse population groups. These insights can support ongoing policy and service development activities to further enhance palliative care. [ABSTRACT FROM AUTHOR]

Access to high‐quality and safe evidence‐based palliative care (PC) is important to ensure good end‐of‐life care for older people in residential aged care homes (RACHs). However, many barriers to providing PC in RACHs are frequently cited. The Quality End‐of‐Life Care (QEoLC) Project was a multicomponent intervention that included training, evidence‐based tools and tele‐mentoring, aiming to equip healthcare professionals and careworkers in RACHs with knowledge, skills and confidence in providing PC to residents. This study aims to understand: (1) the experiences of healthcare professionals, careworkers, care managers, planners/implementers who participated in the implementation of the QEoLC Project; and (2) the barriers and facilitators to the implementation. Staff from two RACHs in New South Wales, Australia were recruited between September to November 2021. Semi‐structured interviews and thematic data analysis were used. Fifteen participants (seven health professionals [includes one nurse, two clinical educators, three workplace trainers, one clinical manager/nurse], three careworkers and five managers) were interviewed. Most RACH participants agreed that the QEoLC Project increased their awareness of PC and provided them with the skills/confidence to openly discuss death and dying. Participants perceived that the components of the QEoLC Project had the following benefits for residents: more appropriate use of medications, initiation of timely pain management and discussions with families regarding end‐of‐life care preferences. Key facilitators for implementation were the role of champions, the role of the steering committee, regular clinical meetings to discuss at‐risk residents and mentoring. Implementation barriers included: high staff turnover, COVID‐19 pandemic, time constraints, perceived absence of executive sponsorship, lack of practical support and systems‐related barriers. The findings underline the need for strong leadership, supportive organisational culture and commitment to the implementation of processes for improving the quality of end‐of‐life care. Furthermore, the results highlight the need for codesigning the intervention with RACHs, provision of dedicated staff/resources to support implementation, and integration of project tools with existing systems for achieving effective implementation outcomes. [ABSTRACT FROM AUTHOR]

Non‐kin carers provide vital resources for older people living alone with increasing care needs, especially if they cannot rely on the support of family members. However, this kind of commitment presents numerous challenges throughout the care trajectory and beyond. To explore these aspects in more depth, a qualitative study was designed including a retrospective interpretation of interview data with non‐kin carers (n = 15) and additional in‐depth interviews (n = 8) with people who had cared for an older person living alone with no family nearby. Analyses of the verbatim transcriptions followed coding procedures and were supported by MaxQDA software. Our findings demonstrate that non‐kin carers had to negotiate personal boundaries continuously over the end‐of‐life trajectory to deal with the increasing complexity of care demands and overburdening situations. Following the older person's death, non‐kin carers were involved in funeral arrangements and settled practical or legal matters when no family members were available or had little inclination to contribute. The findings highlight that non‐kin carers make a great effort to safeguard the interests and needs of older people living alone, ensuring their autonomy and dignity towards the end of life and beyond. However, the burdens experienced require future research to better understand the support needs of non‐kin carers providing end‐of‐life care for an older person living alone. [ABSTRACT FROM AUTHOR]

Previous studies on palliative care have assessed the phenomenon of Information Concealment (IC), confirmed its relevance and emphasised the need to have a scale for its assessment. The aim of this study was to design and validate such an instrument. The sample comprised 150 palliative caregivers (23 men and 127 women). The dimensionality of the items of the Information Concealment Scale for Caregivers (ECOI) was assessed using Exploratory Factor Analysis and an optimal implementation of parallel analysis. Reliability and criterion validity were analysed using sample data. The ECOI comprises three factors: Concealment or dissimulation about the disease, misrepresentation of the real situation and control of the information. The scale has excellent reliability and shows criterion validity. Therefore, the ECOI is a reliable and valid instrument to objectively measure IC among Spanish caregivers in palliative care settings. [ABSTRACT FROM AUTHOR]

Within the context of an ageing population and the added challenges posed by COVID‐19, the need to optimise palliative care management in the community – the setting where a significant proportion of people prefer to die – cannot be underestimated. To date, there has been a dearth of research exploring community palliative care delivery during the pandemic. This study aimed to explore the impact of and response to COVID‐19 for hospice community services in Aotearoa/New Zealand. Eighteen structured interviews were conducted (10 February–18 August 2021) with healthcare professionals from sixteen purposively sampled community hospices from New Zealand regions according to the number of COVID‐19‐positive patients per 100,000 inhabitants (low, medium and high) with oversampling of high prevalence areas. Two overarching themes emerged 'challenges' and 'adaptations'. Each theme had several subthemes related to service delivery in communication, visiting, allied health team collaboration and volunteer services. Adaptations involved adjusting official health advice to the local context, increased use of telehealth, reducing infection risk during in‐home visits through triaging of cases, division of the workforce into teams and repurposing volunteers' services. Despite these adaptations, challenges remained, including increased workload pressures for staff and an absence of the human touch for patients and families. Implications for hospice practice and recommendations for future research are discussed. Governments must acknowledge the essential contribution of hospice to the COVID‐19 pandemic and ensure that these services are incorporated into the healthcare system response. [ABSTRACT FROM AUTHOR]

Every year tens of thousands of older Canadians travel to the southern United States (US) to live there seasonally during the winter months to enjoy a warmer climate—a practice known as international retirement migration. Several factors facilitate participation in this transnational mobility, including having the financial resources needed to live abroad. For those managing chronic or acute health conditions, traveling with a caregiver (typically a spouse) is another important facilitator. In this qualitative analysis, we explore the transnational systems of support that Canadian international retirement migrant spousal caregivers draw upon to enable them to provide care while in the US. We report on the findings of ten semi‐structured dyad interviews (n = 20 participants) conducted with Canadian international retirement migrants living seasonally in Yuma, Arizona. The dyads consisted of spouses, one of whom had defined care needs and the other of whom provided informal care. Through thematic analysis of these interviews, we identified three types of transnational support systems that spousal caregivers draw on: relational, community‐based and practical. While aspects of these support systems have been documented in other informal care‐giving studies, this analysis demonstrates their copresence in the transnational care‐giving context associated with international retirement migration. Overall, this analysis highlights the benefits of close social relations enjoyed by international retirement migrants providing informal care to mitigate the lack of access to their established support networks at home. [ABSTRACT FROM AUTHOR]

The COVID‐19 pandemic has greatly affected the delivery of cancer care. Due to social restrictions and reductions in health service contact, it is expected that the burdens experienced by informal carers have risen. This study provides an analysis of cancer carer's experiences and needs as a consequence of the pandemic. An online mixed method design was used. The survey included open‐ended responses to explore carer's experiences and measures of health status (EQ‐5D‐5L), Quality of Life (WHOQoL‐BREF) and impact of COVID‐19. Open‐ended responses were analysed thematically according to Miles and Huberman techniques and quantitative data were analysed descriptively. One hundred and ninety‐six cancer carers participated in the online survey. Mixed method analysis demonstrated that carers were experiencing major difficulties. Of these n = 142/72.4% experienced challenges related to anxiety and depression; 35.2% rated these problems as slight with 25% rating these as moderate and 11.2% as severe. Qualitative analysis identified significant and sustained negative impacts of the pandemic on psychological health, social isolation, finance and access to health services with carers requiring urgent information and support. Carer's challenges have deepened throughout the COVID‐19 pandemic. There is an urgent need to develop innovative ways to provide support for carers to provide palliative and supportive care at home now and during recovery from the pandemic. Due to the need for infection control meaningful development and integration of urgent digital technology might be the most feasible solution. [ABSTRACT FROM AUTHOR]

Informal caregivers, mainly family members and friends, provide supportive and palliative care for people with amyotrophic lateral sclerosis (ALS) during their terminal disease course. Informal caregiving for people with ALS continues towards palliative care and end‐of‐life care with the progression of the disease. In this study, we provide a theoretical understanding of informal caregiving in ALS utilising 23 semi‐structured interviews conducted with informal caregivers of people with ALS (pwALS) in Switzerland. Due to the expected death of the care recipient, our grounded theory approach outlines informal caregivers' caregiving work as an effort to secure a balance amongst different caregiving activities, which feed into the final stage of providing palliative care. Overall, our theoretical understanding of ALS informal caregiving work encompasses the core category 'holding the balance' and four secondary categories: 'Organising support', 'being present', 'managing everyday life' and 'keeping up with ALS'. The core category of holding the balance underlines the significance of ensuring care and normalcy even as disease progresses and until the end of life. For the informal caregivers, this balancing act is the key element of care provision to pwALS and therefore guides decisions surrounding caregiving. On this understanding, those caregivers that succeed in holding the balance can provide care at home until death. The balance is heavily influenced by contextual factors of caregiving, for example relating to personal characteristics of the caregiver, or activities of caregiving where the goal is to ensure the quality of life of the pwALS. As there is a heterogeneity of speed and subtype of progression of ALS, our work accounts for multiple caregiving trajectories. [ABSTRACT FROM AUTHOR]

There are potential benefits associated with advance care planning (ACP), and general practitioners (GPs) are well placed to coordinate ACP initiatives with their patients. Few studies have reported on the uptake of different forms of advance care plan conducted by GPs and how this affects patients' place of death. The primary aims of the study were to examine uptake of verbal (conversations regarding care preferences) and written (documented care preferences) advance care plans and their associated factors from the perspective of Australian GPs. The secondary aim was to determine the impact of different types of advance care plans on place of death. Sixty‐one GPs from three Australian states used a validated clinic‐based data collection process to report on care provided for decedents in the last year of life, including provision of services, place of death, and uptake of ACP. We found that 58 (27.9%), 91 (43.7%) and 59 (28.4%) reported decedents had no advance care plans, verbal plans or written plans, respectively. There were increased uptake of both verbal plans (relative risk ratio [RRR] = 13.10, 95% confidence interval [CI]: 2.18–77.34) and written plans (RRR = 10.61, 95% CI: 1.72–65.57) if GPs foresaw the death for >90 days versus <7 days. Palliative care training history for GPs predicted uptake of verbal plans (RRR = 5.83, 95% CI: 1.46–31.93). Patients with verbal plans versus no plans were more likely to die at a private residence (odds ratio = 4.97, 95% CI: 1.32–18.63). Our findings suggest that expectation of death for at least three months prior to the event (where clinically possible) and palliative care training for GPs improve the uptake of ACP in general practice. Larger pragmatic trials are required to determine the impact of ACP on patients' place of death. [ABSTRACT FROM AUTHOR]

In addition to palliative care delivery at home or in hospital, palliative day care centres occupy an in‐between position in palliative care. In palliative day care centres, multidisciplinary teams provide holistic care and support for people with (chronic) life‐limiting conditions, or clients, in a homely surrounding, allowing them to remain living at home while attending a specialist palliative care service. This study aims to evaluate palliative day care centres from a user perspective. We conducted a full‐population cross‐sectional survey of clients (N = 86) and their family caregivers (N = 63) in all five palliative day care centres in Flanders, Belgium from January until December 2019. We used validated instruments supplemented with self‐developed items to measure participants' reasons for use, support provided, unmet support needs and added value to other (palliative) care services across palliative care domains, i.e., physical, psychological, social and spiritual care. Response rate was 77% for clients and 81% for family caregivers. The most often indicated reasons for use were that the client needs social contacts (clients: 73%, caregivers: 65%), to enable the client to live at home as long as possible (resp. 58%, 55%) and to reduce the family caregiver's mental burden (resp. 42%, 65%). Three out of four family caregivers felt better able to combine daily activities with caring for the client (77%) and felt better able to perform their family care‐giving tasks (77%) because the client attends the palliative day care centre. Thirty‐six per cent of clients had received support for social needs exclusively in the palliative day care centre and not from any professionals outside palliative day care. Palliative day care centres seem to be of added value for those care domains to which often less attention is paid in other settings, particularly social and emotional support, both for clients and family caregivers. [ABSTRACT FROM AUTHOR]

Measuring the quality of life in family caregivers of people in palliative care is essential to document the impact of care on the caregiver. This study aimed to adapt and validate a Latin American‐Spanish version of the QOLLTI‐F scale in family caregivers of palliative care patients. This study was conducted between May and November 2019 in Medellin, Colombia. We develop three phases: translation and semantic adaptation (n = 17), face and content validity (n = 21), construct validity, internal consistency (n = 208) and test–retest reliability (n = 35). Main family caregivers of stage‐IV cancer patients receiving palliative treatment, participated. In the translation and semantic adaptation, some items were adjusted following the caregivers' recommendations. In face validity, Fleiss' Kappa was over 0.65 for family caregivers. In content validity, Fleiss' Kappa ranged from 0.54 to 1 for experts. In construct validity, the original version seven‐factor structure did not show appropriate model fit indices. The data revealed instead a new 3‐factor structure related to (1) impact of care‐giving, (2) social and healthcare interactions and (3) meaning of life. Cronbach's alpha was 0.83 for the overall scale. Test–retest reliability was 0.87 between measurements 1 and 2. This study found that The Latin American‐Spanish version of the QOLLTI‐F scale is an understandable, useful, and relevant tool for family caregivers of people with cancer receiving palliative care. Future research is needed to confirm the factor structure identified in this study. [ABSTRACT FROM AUTHOR]

Project ECHO (Extension for Community Healthcare Outcomes) uses videoconferencing technology to support and train healthcare professionals (HCPs) remotely. A 4‐month fortnightly ECHO programme was developed and implemented to enhance palliative care provision by primary care therapists. Teaching and case‐based discussions were facilitated by palliative care specialists. A mixed‐methods cohort study was used to evaluate the project. ECHO participants completed pre‐ and post‐programme questionnaires regarding their knowledge and skills across key palliative care domains. Focus groups were held before programme commencement to explore participants' attitudes and experiences of palliative care and after programme conclusion to explore their experiences of ECHO. Twenty‐six primary care HCPs commenced the ECHO programme. Mean scores in self‐rated confidence in knowledge and skill improved significantly (p <.002) following the programme. Twenty‐one primary care HCPs completed the post‐ECHO surveys and scores of self‐rated confidence in knowledge and skills were significantly higher than pre‐ECHO scores. Ninety‐five percent of participants (n = 19) reported ECHO met their learning needs and was an effective format to enhance clinical knowledge. Eighty‐five percent of participants (n = 17) would recommend ECHO to their colleagues. Project ECHO improved palliative care knowledge and skills of primary care HCPs in Ireland, with potential to address the growing need for integrated palliative care services. [ABSTRACT FROM AUTHOR]

A generalist–specialist model of palliative care is well established as a framework for the provision of community care in resource‐rich countries. However, evidence is lacking regarding how the model is experienced by family carers and the extent to which access to both generalist and specialist palliative care is equitable. A cross‐sectional postal survey was undertaken to explore bereaved family's experiences of generalist palliative care and its intersection with hospice services in the last 3 months of life. A modified version of the Views of Informal Carers—Evaluation of Services survey was sent to 4,778 bereaved family. Data were collected between February 2017 and October 2018. Chi‐square was utilised to identify factors that impacted on experiences of generalist palliative care; analysis of free text data comprising 45,823 words was undertaken using a directed content analysis approach. Eight hundred and twenty‐six questionnaires were returned (response rate = 21%). Seventy per cent of people (n = 579) spent some time at home in the last 3 months prior to death. People who received support from hospice were more likely to receive support from multiple other services. Those who received no community services were less likely to feel supported by their general practitioner, less likely to spend the last 2 days of life or die at home. Feeling supported had a strong association with services working well together, being involved in decision‐making and being aware of the poor prognosis. The provision of palliative care is complicated by a lack of integration with specialist palliative care and may be the basis of continuing inequities in the provision of community care at the end of life. The assumption at a policy level that "generalists" are willing and able to play a key role in palliative care provision needs to be further challenged. [ABSTRACT FROM AUTHOR]

We have little knowledge of differences in end‐of‐life care between home settings and residential aged care facilities (RACFs) where people spend most of their last year of life. This study aimed to compare end‐of‐life care between home settings and RACFs from the perspective of Australian general practitioners (GPs). A descriptive study was conducted with 62 GPs from Western Australia, Queensland and Victoria. Participants were asked to provide reports on end‐of‐life care of decedents in their practice using a validated clinic‐based data collection process developed by our team between September 2018 and August 2019. Of the 213 reported expected deaths, 66.2% mainly lived at home in the last year of life. People living at home were more likely to die at a younger age (median 77 vs. 88, p < 0.001), to be male (51.1% vs. 33.3%, p = 0.01) and to die of cancer (53.9% vs. 4.2%, p < 0.001) compared to those in RACFs. There were no significant differences between the two patient groups for seven out of the eight assessed symptoms, except nausea. GPs' perceived roles in caring for patients and levels of their involvement in provision of common palliative care services were comparable between the two groups. The usual accommodation setting was most frequently considered the preferred place of death in both groups. However, more home residents ended up dying in hospital compared to RACF residents. There were significantly higher frequencies of end‐of‐life discussions (ORs ranged 5.46–9.82 for all topic comparisons) with GPs associated with people living at home versus RACFs. One opportunity for improved care is through promoting greater involvement of GPs in end‐of‐life discussions with RACF residents and staff. In general, more Australians could potentially remain at home until death if provided with greater access to essential specialist palliative care services and supportive services in home settings. [ABSTRACT FROM AUTHOR]

Informal care plays an important role in the care of care‐recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non‐primary caregivers. Moreover, little is known about the provision of informal care in the context of home‐based palliative care. The purpose of this study was to examine the provision of primary and non‐primary informal care‐giving and their respective determinants. Primary caregivers assume the main responsibility for care, while non‐primary caregivers are those other than the primary caregiver who provide care‐giving. A longitudinal, prospective cohort design was conducted and data were drawn from two palliative care programs in Canada between November 2013 and August 2017. A total of 273 caregivers of home‐based palliative care cancer care‐recipients were interviewed biweekly until the care recipient died. The outcomes were the propensity and intensity of informal care‐giving. Regression analysis with instrumental variables was used. About 90% of primary caregivers were spouses and children, while 53% of non‐primary caregivers were others rather than spouses and children. The average number of hours of primary and non‐primary informal care‐giving reported for each 2‐week interview period was 83 hr and 23 hr, respectively. Hours of home‐based personal support workers decreased the intensity of primary care‐giving and the likelihood of non‐primary care‐giving. Home‐based nursing visits increased the propensity of non‐primary care‐giving. The primary care‐giving and non‐primary care‐giving complement each other. Care recipients living alone received less primary informal care‐giving. Employed primary caregivers decreased their provision of primary care‐giving, but promoted the involvement of non‐primary care‐giving. Our study has clinical practices and policy implications. Suitable and targeted interventions are encouraged to make sure the provision of primary and non‐primary care‐giving, to balance the work of the primary caregivers and their care‐giving responsibility, and to effectively arrange the formal home‐based palliative care services. [ABSTRACT FROM AUTHOR]

Little has been said about the disruptive impact that the inability to eat and to participate in mealtimes has for patients with a life‐threatening illness and their families. The aim of the current study is to overcome this gap and shed light on how food and eating practices are experienced by families at the end‐of‐life. An ethnographic research was developed in two Portuguese palliative care units: participant observation was conducted during 10 months and in‐depth interviews were carried out with 10 patients with a life‐threatening illness, 20 family members and 20 palliative care professionals. Food is not only a matter of nutrition in a biological sense, but also an act of giving care to patients with a life‐threatening illness. The findings suggest that food and eating practices affect the processes of relationality and of doing family at the end‐of‐life in Portugal. Attention is particularly paid to gender differences. The study supports recent sociological research which understands the dying process as a relational experience and intends to develop sociological knowledge on the materialities of care. [ABSTRACT FROM AUTHOR]

An individual and psychological emphasis has influenced practice and research on bereavement following informal care provision in the context of life‐limiting illness. Consideration of the potential for bereavement to be shaped by intersecting social and structural inequities is needed; and should include an understanding of interactions with government institutions and social policy. This qualitative study employed interpretive description to explore the way in which palliative care workers and welfare sector workers perceive and approach experiences and needs of bereaved carers receiving government income support or housing assistance in Western Sydney, an area associated with recognised socioeconomic disadvantage. A total of 21 palliative care workers within a public health service and welfare workers from two government social welfare services participated in in‐depth interviews. Data were analysed using framework analysis. Participants highlighted social welfare policy and related interactions that may impact bereavement, potentially related to financial, housing and employment precariousness. Personal, interpersonal and structural factors perceived to shape the navigation of welfare needs were explored, alongside needed professional and structural changes envisioned by workers. With limited forms of capital, vulnerably positioned carers may encounter difficulties that heighten their precariousness in bereavement. Transactional organisational cultures alongside health and welfare agencies that function in a siloed manner appear to contribute to structural burden for carers, following death due to life‐limiting illness. Palliative care and welfare workers also associated elements of their work with bereaved carers with their own experiences of helplessness, frustration and distress. Findings point to a need for the development of interagency strategies in addition to policy underpinned by more nuanced understandings of vulnerability in bereavement, post‐caring. [ABSTRACT FROM AUTHOR]

The objective of this study was to understand the conceptualisation and development of a novel way of providing end‐of‐life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. A participatory action research design enabled a situational analysis, together with change processes. The study setting was a hospice in the South of England, and its network of wider associates in the local health economy. Participants were purposively sampled to provide relevant information. Data collection (2017–2018) included documents (e.g., meeting minutes) and interviews (individual and group) with external (e.g., GPs) and internal (e.g., staff, managers, volunteers, patients, family carers) stakeholders. These were followed by action cycles conducted by a core action group which explored issues related to family and young carers, the relationship between the main and Cottage Hospices and workforce engagement with the change process. Iterative, inductive, thematic analysis was followed by axial coding facilitated within NVivo. Twenty‐six individual and eight follow‐up interviews, two group interviews and five discrete action cycles were completed. At the core was a focus on disruption of the norm of professionally provided and mediated care, with three main themes: imagining the future of Cottage Hospice (growing demand, a home‐like space, innovative roles for families and volunteers); developing the role of family caregivers (making agreements, meeting needs, social inclusion and the 'unknown' expectations) and quality and safety issues (negative perceptions, personalised care and volunteer roles). Change was viewed as both a threat and an opportunity. Cottage Hospice represents the possibility of a truly new way of meeting the needs of dying people and their families, and could act as a template for progressive service developments elsewhere. [ABSTRACT FROM AUTHOR]

The Institute of Medicine reports lesbian, gay, bisexual and transgender (LGBT) individuals having the highest rates of tobacco, alcohol and drug use leading to elevated cancer risks. Due to fear of discrimination and lack of healthcare practitioner education, LGBT patients may be more likely to present with advanced stages of cancer resulting in suboptimal palliative care. The purpose of this scoping review is to explore what is known from the existing literature about the barriers to providing culturally competent cancer‐related palliative care to LGBT patients. This review will use the five‐stage framework for conducting a scoping review developed by Arksey and O'Malley. The PubMed, Scopus, PsychINFO and Cochrane electronic databases were searched resulting in 1,442 citations. Eligibility criteria consisted of all peer‐reviewed journal articles in the English language between 2007 and 2020 resulting in 10 manuscripts. Barriers to palliative cancer care for the LGBT include discrimination, criminalisation, persecution, fear, distress, social isolation, disenfranchised grief, bereavement, tacit acknowledgment, homophobia and mistrust of healthcare providers. Limited healthcare‐specific knowledge by both providers and patients, poor preparation of legal aspects of advanced care planning and end‐of‐life care were underprovided to LGBT persons. As a result of these barriers, palliative care is likely to be provided for LGBT patients with cancer in a deficient manner, perpetuating marginalisation and healthcare inequities. Minimal research investigates these barriers and healthcare curriculums do not provide practitioners skills for administering culturally sensitive palliative care to LGBT patients. [ABSTRACT FROM AUTHOR]

The study objective was to explore the characteristics of rural general practice which exemplify optimal end‐of‐life (EOL) care from the perspective of people diagnosed with cancer, their informal carers and general practitioners (GPs); and the extent to which consumers perceived that actual EOL care addressed these characteristics. Semi‐structured telephone interviews were conducted with six people diagnosed with cancer, three informal carers and four GPs in rural and regional Australia. Using a social constructionist approach, thematic analysis was undertaken. Seven characteristics were perceived to be essential for optimal EOL care: (1) commitment and availability, (2) building of therapeutic relationships, (3) effective communication, (4) psychosocial support, (5) proficient symptom management, (6) care coordination and (7) recognition of the needs of carers. Most GPs consistently addressed these characteristics. Comprehensive EOL care that meets the needs of people dying with cancer is not beyond the resources of rural and regional GPs and communities. [ABSTRACT FROM AUTHOR]

In New Zealand, as in other industrialised societies, an ageing population has led to an increased need for palliative care services. A cross‐sectional postal survey of bereaved carers was conducted in order to describe both bereaved carer experience of existing services in the last 3 months of life, and to identify factors associated with overall satisfaction with care. A self‐complete questionnaire, using a modified version of the Views of Informal Carers – Evaluation of Services (VOICES) instrument was sent to 4,778 bereaved carers for registered deceased adult (>18yrs) patients in one district health board (DHB) for the period between November 2015 and December 2016. Eight hundred and twenty‐six completed questionnaires were returned (response rate = 21%). The majority of respondents (83.8%) rated their overall satisfaction with care (taking all care during the last 3 months into account), as high. However, satisfaction varied by care setting. Overall satisfaction with care in hospice was significantly higher compared to other settings. Additionally, patients who died in hospice were more likely to be diagnosed with cancer and under 65 years of age. The factors associated with overall satisfaction with care in the last 2 days of life were: caregiver perceptions of treatment with dignity and respect; adequate privacy; sufficient pain relief and decisions in line with the patient's wishes. A more in‐depth exploration is required to understand the quality of, and satisfaction with, care in different settings as well as the factors that contribute to high/low satisfaction with care at the end‐of‐life. [ABSTRACT FROM AUTHOR]

Community health workers (CHWs) have been effectively utilised in resource‐limited settings to combat a growing demand for health access that cannot be met by the current workforce. The purpose of this study was to evaluate a CHW training programme in Malawi that integrated technology into rehabilitation care delivery. This was a retrospective cross‐sectional study of a training programme conducted in December 2018. The participants were a convenience sample of all active home‐based palliative care CHWs at St. Gabriel's Hospital (n = 60). The data collected included the following: a written pre‐ and post‐knowledge test, skills competency checklist and a post‐training programme survey. Descriptive frequencies described skill competency and quantitative responses from the post‐training programme survey. Paired t test (α = 0.05) analysis determined the significance of knowledge acquisition. Themes in the narrative responses in the post‐training survey were identified. Both training programme groups showed significantly greater knowledge on the post‐test (M = 9.50, SD = 0.861; M = 9.43, SD = 0.971) compared to the pre‐test (M = 7.97, SD = 1.351; M = 7.90, SD = 1.900); t(29) = 6.565, p <.001; t(29) = 4.104, p <.001 for Group 1 and Group 2, respectively. All participants demonstrated skill competency in 100% of the skills. All participants responded that the training programme helped them review skills and understand how to use technology 'A lot' on a Likert scale (no, a little, some, a lot). Facilitators of their work included training programmes, phones, communication with the hospital and collaboration amongst CHWs. Barriers included transportation needs, lack of patient care supplies and lack of caregiver compliance. Overall, utilisation of their knowledge and skills from the training programmes helped their patients make improvements in mobility and function that are meaningful to their quality of life in the village. This study highlights the importance of assessing programmes in low‐resource settings with a focus on feasibility and developing local capacity. [ABSTRACT FROM AUTHOR]

Volunteers occupy a specific space in the delivery of palliative care (PC), addressing specific aspects of care and providing a link between professional healthcare providers and informal care. Engaging and empowering these volunteers can be an important strategy to deliver more integrated and comprehensive PC. Insights into current actual volunteer involvement and collaboration across different healthcare services providing generalist and specialist PC is lacking. This study aims to describe volunteers' involvement in the organisation of PC, collaboration with professionals and how they evaluate this. A cross‐sectional postal survey of volunteers was conducted between June and November 2018 using a written questionnaire. A two‐step disproportionately stratified cluster randomised sample of 2,273 registered volunteers was taken from different strata of healthcare organisations providing care for people with serious illnesses in the Flemish healthcare system (Belgium). Overall response was 35% (15%–60% for individual strata). About 67% of volunteers were often to always informed about the organisation of patient care and 48% felt the organisation often to always takes their opinion into account, while a minority report having decision rights (18%) or autonomy (24%). For some, their organisation failed to inform (17%), consult (27%), take into account their opinion (21%), give them decision rights (20%) or autonomy (16%) over certain aspects of patient care provision often enough. Overall, volunteer–professional collaboration was low, and mostly limited to information sharing. Dedicated PC volunteers collaborated extensively with nurses, often involving task coordination (46%). Ambiguity regarding tasks, agreements and/or rules (15%) and lack of information exchange (14%) were the most cited barriers to volunteer–professional collaboration. Many volunteers were open to stronger involvement in the organisation of care in PC services. Collaboration with professionals seemed lacking in width and depth. Particularly, nursing home volunteers indicated a desire and large potential for more involved and collaborative roles in PC provision. [ABSTRACT FROM AUTHOR]

'Death Doulas' have emerged as a relatively new role supporting dying people and their family members; however there is a lack of clarity around how the role is enacted, and around the death doula role within health and social care systems. This study aimed to explore the ambiguity of the role of death doulas in end‐of‐life care including the skills, training and experience of death doulas; how the role is communicated to the community; and the relationships to palliative care providers and other health professionals. People identifying as death doulas were invited to participate in an online survey between April and June 2018. Ethical approval was obtained. A descriptive cross‐sectional study was conducted, and purposive sampling was used to survey death doulas registered with death doula training organisations, newsletters and email distribution lists. Questions were based on the researchers' previous findings about the role. One hundred and ninety completed or partially completed surveys were received. Results showed diversity within, and some commonalities across the sample in terms of: training, experience and skills; Death doulas have emerged not only as a response to the overwhelming demands on families and carers, but also demands placed on health care professionals (including palliative care) at the end‐of‐life. They have identified gaps in health and social care provision, perhaps taking on tasks that health professionals don't have responsibility for. However, the roles and scope of practice of death doulas is not clear‐cut even within their cohort, which can then make it hard for patients and families when choosing a death doula, especially as a lack of regulation and standardised training means that doulas are working without oversight, and often in isolation. [ABSTRACT FROM AUTHOR]

Ageing populations increasingly face chronic and terminal illnesses, emphasising the importance of palliative care and quality of life for terminally ill people. Facing resource constraints in professional healthcare, some governments expect informal caregivers like volunteers to assume a greater share of care provision. We know volunteers are present in palliative care and perform many roles, ranging from administration to providing companionship. However, we do not know how involved they are in the organisation of care and how healthcare organisations appraise their involvement. To address this, we provide an extensive description of the involvement of volunteers who provide direct patient palliative care across the Flemish healthcare system in Belgium. We conducted a cross‐sectional postal survey of 342 healthcare organisations in Flanders and Brussels in 2016, including full‐population samples of palliative care units, palliative day care centres, palliative home‐care teams, medical oncology departments, sitting services, community home‐care services, and a random sample of nursing homes. Volunteer involvement was measured using Sallnow and Paul's power‐sharing model, which describes five hierarchical levels of engagement, ranging from being informed about the organisation of care to autonomy over certain aspects of care provision. Response was obtained for 254 (79%) organisations. Volunteers were often informed about and consulted regarding the organisation of care, but healthcare organisations did not wish for more autonomous forms of volunteer involvement. Three clusters of volunteer involvement were found: "strong involvement" (31.5%), "restricted involvement" (44%), and "uninvolved" (24.5%). Degree of involvement was found to be positively associated with volunteer training (p < 0.001) and performance of practical (p < 0.001) and psychosocial care tasks (p < 0.001). Dedicated palliative care services displayed a strong degree of volunteer involvement, contrary to generalist palliative care services, suggesting volunteers have a more important position in dedicated palliative care services. A link is found between volunteer involvement, training, and task performance. [ABSTRACT FROM AUTHOR]

Abstract: We carried out a scoping review to identify key priorities and challenges relevant to rural Indigenous palliative care stated in existing literature. Our scoping review activities followed Arskey and O'Malley's principles for conducting a scoping review. We included peer‐reviewed literature from MEDLINE, CINAHL and EMBASE that included a discussion of Indigenous populations, palliative care, and rural settings, and did not use date limits. The literature search was conducted in April 2016, and the retrieved literature was screened for relevance and appropriateness April 2016–March of 2017. In addition to the academic literature, a scan of the grey literature was conducted in March 2017. The retrieved grey literature was screened for relevance and reviewed by a team from a provincial health authority serving Indigenous peoples to ensure relevance in a rural BC setting. Once reviewed for relevance and appropriateness, we added four reports to supplement our analysis. Ultimately, 44 peer‐reviewed articles and 4 pieces of grey literature met our inclusion criteria and were included in the review. Our analysis revealed several challenges and priorities relevant to rural Indigenous palliative care. Key challenges included: (i) environmental and contextual issues; (ii) institutional barriers; and (iii) interpersonal dynamics challenging client/clinician interactions. Priorities included: (i) family connections throughout the dying process; (ii) building local capacity for palliative care to provide more relevant and culturally appropriate care; and (iii) flexibility and multi‐sectoral partnerships to address the complexity of day‐to‐day needs for patients/families. These findings point to several areas for change and action that can improve the relevance, access and comprehensiveness of palliative care programming for rural Indigenous communities in Canada and elsewhere. Taking into account of the diversity and unique strengths of each Indigenous community will be vital in developing sustainable and meaningful change. [ABSTRACT FROM AUTHOR]

Abstract: Surveys indicate that many Australians would prefer to die at home, but relatively few do. Recognising that patients and their families may not have the support they need to enable end‐of‐life care at home, a consortium of care providers developed, and received funding to trial, the Palliative Care Home Support Program (PCHSP) across seven health districts in New South Wales, Australia. The programme aimed to supplement end‐of‐life care in the home provided by existing multidisciplinary community palliative care teams, with specialist supportive community care workers (CCWs). An evaluation of the service was undertaken, focussing on the self‐reported impact of the service on family carers (FCs), with triangulation of findings from community palliative care teams and CCWs. Service evaluation data were obtained through postal surveys and/or qualitative interviews with FCs, community palliative care teams and CCWs. FCs also reported the experience of their loved one based on 10 items drawn from the Quality of Death and Dying Questionnaire (QODD). Thematic analysis of surveys and interviews found that the support provided by CCWs was valued by FCs for: enabling choice (i.e. to realise end‐of‐life care in the home); providing practical assistance (“hands‐on”); and for emotional support and reassurance. This was corroborated by community palliative care teams and CCWs. Responses by FCs on the QODD items indicated that in the last week of life, effective control of symptoms was occurring and quality of life was being maintained. This study suggests that satisfactory outcomes for patients and their families who wish to have end‐of‐life care in the home can be enabled with the additional support of specially trained CCWs. A notable benefit of the PCHSP model, which provided specific palliative care vocational training to an existing community care workforce, was a relatively rapid increase in the palliative care workforce across the state. [ABSTRACT FROM AUTHOR]

The prevalence of dementia will continue to increase with the ageing of the population. Many people living with dementia will reach a stage where surrogate decision-makers-mostly family carers-will need to make a range of decisions on their behalf. The aim of this study was to learn from surrogate decision-makers how they can be most effectively supported in this role. The study employed a qualitative design using semi-structured face-to-face or telephone interviews with a purposive sample of 34 surrogate decision-makers of people living with dementia. Transcripts of participant interviews were reviewed using a thematic approach to analysis. Four main themes were identified from this analysis: needing greater community awareness of dementia and its impact; intervening early in cognitive decline; relying on health professionals for ongoing support; and seeking and using support from wherever is relevant for each person. Based on this analysis and a review of the literature, we propose a wholistic set of recommendations for the support of surrogate decision-makers. Healthcare professionals need to help family carers understand the likely trajectory of dementia, including the significance of surrogate decision-making. They can support the person living with dementia and their surrogates to undertake advance care planning and they can act as empathic guides during this process. Health and community care organisations need to provide a 'key worker' model wherever possible so that the person living with dementia and their surrogate decision-maker do not have to seek support from multiple staff members or organisations. Carer support programmes can routinely include information and resources about surrogate decision-making. Community and government organisations can help people prepare for the possibility of becoming surrogate decision-makers by promoting a greater public awareness and understanding of both dementia and advance care planning. [ABSTRACT FROM AUTHOR]

With health system restructuring in Canada and a general preference by care recipients and their families to receive palliative care at home, attention to home-based palliative care continues to increase. A multidisciplinary team of health professionals is the most common delivery model for home-based palliative care in Canada. However, little is known about the changing temporal trends in the propensity and intensity of home-based palliative care. The purpose of this study was to assess the propensity to use home-based palliative care services, and once used, the intensity of that use for three main service categories: physician visits, nurse visits and care by personal support workers ( PSWs) over the last decade. Three prospective cohort data sets were used to track changes in service use over the period 2005 to 2015. Service use for each category was assessed using a two-part model, and a Heckit regression was performed to assess the presence of selectivity bias. Service propensity was modelled using multivariate logistic regression analysis and service intensity was modelled using log-transformed ordinary least squares regression analysis. Both the propensity and intensity to use home-based physician visits and PSWs increased over the last decade, while service propensity and the intensity of nurse visits decreased. Meanwhile, there was a general tendency for service propensity and intensity to increase as the end of life approached. These findings demonstrate temporal changes towards increased use of home-based palliative care, and a shift to substitute care away from nursing to less expensive forms of care, specifically PSWs. These findings may provide a general idea of the types of services that are used more intensely and require more resources from multidisciplinary teams, as increased use of home-based palliative care has placed dramatic pressures on the budgets of local home and community care organisations. [ABSTRACT FROM AUTHOR]

With the future focus on palliative and end-of-life care provision in the community, the role of the general practice team and their relationship with specialist palliative care providers is key to responding effectively to the projected increase in palliative care need. Studies have highlighted the potential to improve co-ordination and minimise fragmentation of care for people living with palliative care need through a partnership between generalist services and specialist palliative care. However, to date, the exact nature of this partnership approach has not been well defined and debate exists about how to make such partnerships work successfully. The aim of this study was to explore how general practice and specialist palliative care team (SPCT) members view their relationship in terms of partnership working. Five focus group discussions with general practices and SPCT members ( n = 35) were conducted in 2012 in two different regions of New Zealand and analysed using a general inductive approach. The findings indicate that participants' understanding of partnership working was informed by their identity as a generalist or specialist, their existing rules of engagement and the approach they took towards sustaining the partnership. Considerable commitment to partnership working was shown by all participating teams. However, their working relationship was based primarily on trust and personal liaison, with limited formal systems in place to enable partnership working. Tensions between the cultures of 'generalism' and 'specialism' also provided challenges for those endeavouring to meet palliative care need collaboratively in the community. Further research is required to better understand the factors associated with successful partnership working between general practices and specialist palliative care in order to develop robust strategies to support a more sustainable model of community palliative care. [ABSTRACT FROM AUTHOR]

This study explored low-income older adults' willingness to (i) complete advance directives, legal documents, whereby an individual designates decision-makers in the event that they cannot make their own decisions about end-of-life treatment preferences, and (ii) the role of social support and other predictors that impact their willingness. This study was conducted as part of a larger study exploring behaviours of advance care planning among low-income older adults. Out of a total of 255 participants from the original study, this study included 204 participants who did not complete an advance directive for data analysis. A cross-sectional study using probability random sampling stratified by ethnicity was used. Older adults residing in two supportive housing facilities or who were members of a senior centre in San Diego, California, USA, were interviewed in person between December 2010 and April 2011. Hierarchical logistic regression analysis revealed that the majority of participants (72.1%) were willing to complete advance directives and the factors significantly predicting willingness to complete included self-rated health, attitudes towards advance decision-making and social support. Participants with a poorer health status ( OR = 1.43, 95% CI = 1.07-1.90) were more willing to complete advance directives. Conversely, participants with higher positive attitudes ( OR = 1.18, 95% CI = 1.00-1.39) and greater social support ( OR = 1.07, 95% CI = 1.00-1.15) were also more willing to complete advance directives. The findings suggest the importance of ongoing support from healthcare professionals in end-of-life care planning. Healthcare professionals can be a source of support assisting older adults in planning end-of-life care. Initiating ongoing communication regarding personal value and preference for end-of-life care, providing relevant information and evaluating willingness to complete as well as assisting in the actual completion of advance directives will be necessary. [ABSTRACT FROM AUTHOR]

Organisational culture has been shown to impact on resident outcomes in residential aged care ( RAC). This is particularly important given the growing number of residents with high palliative care needs. The study described herein (conducted from January 2013 to March 2014) examined survey results from a convenience sample of 46 managers, alongside interviews with a purposively selected sample of 23 bereaved family members in order to explore the perceptions of organisational culture within New Zealand RAC facilities in one large urban District Health Board. Results of the Organisational Culture Assessment Instrument ( OCAI) completed by managers indicated a preference for a 'Clan' and the structured 'Hierarchy' culture. Bereaved family interviews emphasised both positive and negative aspects of communication, leadership and teamwork, and relationship with residents. Study results from both managers' OCAI survey scores and next of kin interviews indicate that while the RAC facilities are culturally oriented towards providing quality care for residents, they may face barriers to adopting organisational processes supportive of this goal. [ABSTRACT FROM AUTHOR]

Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers ( n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years ( SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting. [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]