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Background: Palliative care practitioners are increasingly caring for patients and families from diverse cultural backgrounds. There is growing awareness of the influence of culture on many aspects of care in the palliative phase of an illness. However, disparities have been noted in the provision of palliative care to patients from culturally diverse backgrounds and challenges have been reported in meeting their needs and those of their families. Method: A qualitative systematic review of research papers identified through searching four databases. Papers were screened against inclusion criteria within the timeframe of January 2012 to March 2022. Data was extraction from all included studies and methodological quality assessed utilising the Critical Appraisal Skills Programme Tool. Thematic analysis followed Braun and Clarke's framework and the review is reported in line with PRISMA guidelines. Findings: The search yielded 1954 results of which 26 were included for appraisal and review. Four themes were identified: communication and connection, the role of the family in death and dying, the role of education in addressing uncertainty, and institutional and societal factors. The findings highlighted challenges of communication and a fear of acting in a culturally insensitive way, the pivotal role of the family, the need for an individualised approach to care, the universality of needs when approaching end of life and the need for education of practitioners. Conclusion: These findings suggest that healthcare practitioners draw on their existing skills to adapt their practice to meet the needs of patients from culturally diverse backgrounds. However, results also indicate a need for further education and identification of educational approaches best suited to supporting healthcare professionals in practice. [ABSTRACT FROM AUTHOR]

Background: Oral fluid intake decreases in advanced cancer in the dying phase of illness. There is inadequate evidence to support the assessment, and management, of hydration in the dying. Bioelectrical impedance analysis (BIA) is a body composition assessment tool. BIA has the potential to inform clinal management in advanced cancer, by examining the relationships between hydration status and clinical variables. Aim: BIA was used to determine the association between hydration status, symptoms, clinical signs, quality-of-life and survival in advanced cancer, including those who are dying (i.e. in the last week of life). Materials and methods: We conducted a prospective observational study of people with advanced cancer in three centres. Advance consent methodology was used to conduct hydration assessments in the dying. Total body water was estimated using the BIA Impedance index (Height – H (m)2 /Resistance – R (Ohms)). Backward regression was used to identify factors (physical signs, symptoms, quality of life) that predicted H2/R. Participants in the last 7 days of life were further assessed with BIA to assess hydration changes, and its relationship with clinical outcomes. Results: One hundred and twenty-five people participated (males n = 74 (59.2%), females, n = 51 (40.8%)). We used backward regression analysis to describe a statistical model to predict hydration status in advanced cancer. The model demonstrated that 'less hydration' (lower H2/R) was associated with female sex (Beta = -0.39, p < 0.001), increased appetite (Beta = -0.12, p = 0.09), increased dehydration assessment scale score (dry mouth, dry axilla, sunken eyes - Beta = -0.19, p = 0.006), and increased breathlessness (Beta = -0.15, p = 0.03). 'More hydration' (higher H2/R) was associated with oedema (Beta = 0.49, p < 0.001). In dying participants (n = 18, 14.4%), hydration status (H2/R) was not significantly different compared to their baseline measurements (n = 18, M = 49.6, SD = 16.0 vs. M = 51.0, SD = 12.1; t(17) = 0.64, p = 0.53) and was not significantly associated with agitation (rs = -0.85, p = 0.74), pain (rs = 0.31, p = 0.23) or respiratory tract secretions (rs = -0.34, p = 0.19). Conclusions: This is the first study to use bioimpedance to report a model (using clinical factors) to predict hydration status in advanced cancer. Our data demonstrates the feasibility of using an advance consent method to conduct research in dying people. This method can potentially improve the evidence base (and hence, quality of care) for the dying. Future BIA research can involve hydration assessment of cancers (according to type and stage) and associated variables (e.g., stage of illness, ethnicity and gender). Further work can use BIA to identify clinically relevant outcomes for hydration studies and establish a core outcome set to evaluate how hydration affects symptoms and quality-of-life in cancer. Key message: What is already known about this topic? - Oral fluid intake decreases in people with advanced cancer, especially when they approach the dying phase of their illness. - There is inadequate evidence to support hydration assessment and decision making in the dying phase of illness. - It is important to understand which clinical factors are associated with hydration status in advanced cancer, to enable healthcare professionals, to evaluate hydration status and support clinical decision making. - Bioimpedance is a non-invasive technology, which has potential to identify clinically relevant variables for cancer hydration assessment. What this paper adds. - This is the first study to use bioimpedance to report a model (using clinical factors) to predict hydration status in advanced cancer. - The variables with combined significance for predicting hydration status were biological sex, appetite, dry mouth, dry axilla, sunken eyes, breathlessness and oedema. In the dying phase, hydration status did not significantly change compared to baseline, and hydration status was not significantly associated with survival. Implications for practice, theory or policy. - Further work can use bioimpedance to identify clinically relevant outcomes for hydration studies, to establish a core outcome set to evaluate how hydration affects symptoms and quality-of-life in cancer. [ABSTRACT FROM AUTHOR]

Background/aims: Serious adverse event reporting guidelines have largely been developed for pharmaceutical trials. There is evidence that serious adverse events, such as psychological distress, can also occur in non-pharmaceutical trials. Managing serious adverse event reporting and monitoring in palliative care non-pharmaceutical trials can be particularly challenging. This is because patients living with advanced malignant or non-malignant disease have a high risk of hospitalisation and/or death as a result of progression of their disease rather than due to the trial intervention or procedures. This paper presents a number of recommendations for managing serious adverse event reporting that are drawn from two palliative care non-pharmacological trials. Methods: The recommendations were iteratively developed across a number of exemplar trials. This included examining national and international safety reporting guidance, reviewing serious adverse event reporting procedures from other pharmacological and non-pharmacological trials, a review of the literature and collaboration between the ACTION study team and Data Safety Monitoring Committee. These two groups included expertise in oncology, palliative care, statistics and medical ethics and this collaboration led to the development of serious adverse event reporting procedures. Results: The recommendations included; allowing adequate time at the study planning stage to develop serious adverse event reporting procedures, especially in multi-national studies or research naïve settings; reviewing the level of trial oversight required; defining what a serious adverse event is in your trial based on your study population; development and implementation of standard operating procedures and training; refining the reporting procedures during the trial if necessary and publishing serious adverse events in findings papers. Conclusions: There is a need for researchers to share their experiences of managing this challenging aspect of trial conduct. This will ensure that the processes for managing serious adverse event reporting are continually refined and improved so optimising patient safety. Trial registration: ACTION trial registration number: ISRCTN63110516 (date of registration 03/10/2014). Namaste trial registration number: ISRCTN14948133 (date of registration 04/10/2017). [ABSTRACT FROM AUTHOR]

Background: Residential aged care facilities is one of the most common places to deliver of end of life care. A lack of evidence regarding preferred place for end of life care for residents of aged care facilities impacts on delivery of care and prevents assessment of quality of care. This paper reports the preferences, current status of end of life care and enablers and barriers of care being delivered in line with the wishes of residents of participating aged care facilities. Methods: We collaborated with six equally sized aged care facilities from the Greater Newcastle area, New South Wales, Australia. An audit of the quality of end of life care for residents was conducted by retrospective medical record review (n = 234 deceased patients). A retrospective review of emergency department transfers was conducted to determine the rate of transfer and assign avoidable or not. Qualitative focus group and individual interviews were conducted and analysed for barriers and enablers to end of life care being delivered in accordance with residents' wishes. Results: Most residents (96.7%) wished to remain in their residential aged care facility if their health deteriorated in an expected way. Residents of facilities whose model of care integrated nurse practitioners had the lowest rates of emergency department transfers and timelier symptom management at end of life. Family decision making influenced location of death (either supporting or preventing care in place of patient preference). Conclusion(s): To better provide care in accordance with a person's wishes, aged care facilities need to be supported to enable end of life care insitu through integrated care with relevant palliative care providers, education and communication strategies. Family and community health and death literacy interventions should accompany clinical innovation to ensure delivery of care in accordance with residents' preferences. [ABSTRACT FROM AUTHOR]

Background: Non-beneficial treatment is closely tied to inappropriate treatment at the end-of-life. Understanding the interplay between how and why these situations arise in acute care settings according to the various stakeholders is pivotal to informing decision-making and best practice at end-of-life. Aim: To define and understand determinants of non-beneficial and inappropriate treatments for patients with a non-cancer diagnosis, in acute care settings at the end-of-life. Design: Systematic review of peer-reviewed studies focusing on the above and conducted in upper-middle- and high-income countries. A narrative synthesis was undertaken, guided by Realist principles. Data sources: Cochrane; PubMed; Scopus; Embase; CINAHL; and Web of Science. Results: Sixty-six studies (32 qualitative, 28 quantitative, and 6 mixed-methods) were included after screening 4,754 papers. Non-beneficial treatment was largely defined as when the burden of treatment outweighs any benefit to the patient. Inappropriate treatment at the end-of-life was similar to this, but additionally accounted for patient and family preferences. Contexts in which outcomes related to non-beneficial treatment and/or inappropriate treatment occurred were described as veiled by uncertainty, driven by organizational culture, and limited by profiles and characteristics of involved stakeholders. Mechanisms relating to 'Motivation to Address Conflict & Seek Agreement' helped to lessen uncertainty around decision-making. Establishing agreement was reliant on 'Valuing Clear Communication and Sharing of Information'. Reaching consensus was dependent on 'Choices around Timing & Documenting of end-of-life Decisions'. Conclusion: A framework mapping determinants of non-beneficial and inappropriate end-of-life treatment is developed and proposed to be potentially transferable to diverse contexts. Future studies should test and update the framework as an implementation tool. Trial registration: PROSPERO Protocol CRD42021214137. [ABSTRACT FROM AUTHOR]

Background: There has been an increase in research on improving end of life (EoL) care for older people with dementia in care homes. Findings consistently demonstrate improvements in practitioner confidence and knowledge, but comparisons are either with usual care or not made. This paper draws on findings from three studies to develop a framework for understanding the essential dimensions of end of life care delivery in long-term care settings for people with dementia. Methods: The data from three studies on EoL care in care homes: (i) EVIDEM EoL, (ii) EPOCH, and (iii) TTT EoL were used to inform the development of the framework. All used mixed method designs and two had an intervention designed to improve how care home staff provided end of life care. The EVIDEM EoL and EPOCH studies tracked the care of older people in care homes over a period of 12 months. The TTT study collected resource use data of care home residents for three months, and surveyed decedents' notes for ten months, Results: Across the three studies, 29 care homes, 528 residents, 205 care home staff, and 44 visiting health care professionals participated. Analysis of showed that end of life interventions for people with dementia were characterised by uncertainty in three key areas; what treatment is the 'right' treatment, who should do what and when, and in which setting EoL care should be delivered and by whom? These uncertainties are conceptualised as Treatment uncertainty, Relational uncertainty and Service uncertainty. This paper proposes an emergent framework to inform the development and evaluation of EoL care interventions in care homes. Conclusion: For people with dementia living and dying in care homes, EoL interventions need to provide strategies that can accommodate or "hold" the inevitable and often unresolvable uncertainties of providing and receiving care in these settings. [ABSTRACT FROM AUTHOR]

Background: A training programme was developed and delivered to a cohort of volunteers who were preparing for a unique role to provide companionship to dying patients in the acute hospital setting. This comprehensive programme aimed to provide an opportunity for participants to fully understand the nature and responsibilities of the role, whilst also allowing sufficient time to assess the qualities and competencies of participants for their ongoing volunteering role. Participants completed reflective diaries throughout the training course to record their ongoing thoughts and feelings. The purpose of this paper is to present a phenomenological analysis of these entries to understand participants' experiences, perceptions and motivations. Method: The wider study was structured into three phases. Phase 1 was the delivery of a 12 week, bespoke training programme; Phase 2 involved a 26 week pilot implementation of the Care of the Dying Volunteer Service and Phase 3 was the research evaluation of the training and implementation which would inform the further development of the training programme. Self-reflection is a common component of End of Life training programmes and volunteers in this study completed a reflective diary after participation in each of the training sessions. A thematic analysis was undertaken to explore and understand the participants' experience, perceptions and motivations in relation to their participation in the training. Results: All 19 volunteers completed the reflective diaries. From a potential 228 diary entries over the 12 week training programme, 178 diary entries were submitted (78 %). The following key themes were identified: Dying Alone and the importance of being present, Personal loss and the reconstruction of meaning, Self-Awareness and Personal growth, Self-preservation and Coping strategies and group unity/cohesion. Conclusions: The participants in this study demonstrated that they were able to use the diaries as an appropriate medium for reflection. Their reflections were also instrumental in the ongoing revision and development of the training programme. Analysis of their entries illustrated that the diaries could provide the opportunity for a reappraisal of their world view and personal philosophy around death and dying. Further research is undoubtedly required, however this paper suggests that self-reflection in this way, supports preparation in honing the appropriate attitudes and qualities required to work in this role. [ABSTRACT FROM AUTHOR]

Background: Countries with formal policies for palliative care, and advanced and integrated practices in this field, such as Portugal, face challenges in achieving excellence in care, particularly in home-based assistance. Issues include care coordination among providers, confusion regarding the roles of each health care professional in the network, and a lack of monitoring and evaluation of actions. Our objective was to analyze the implementation of palliative care in primary health care in Portugal. Methods: We conducted a qualitative, descriptive, and exploratory study in Portugal involving health care professionals with experience in palliative care. The data were collected through semistructured interviews and focus groups between March and October 2023. Eighteen health care professionals participated. We used the Alceste software for lexicographic analysis. The research was authorized by an Ethics Committee. Results: Four classes were identified; classes 1 and 2, comprising 77% of the corpus, addressed the study objectives. Participants highlighted inequitable access, strategic development plans with unattainable short-term goals; and low literacy. They emphasized the importance of legislation, professional training initiatives for generalist palliative care at home, and early referral. Home-based challenges included professionals' lack of exclusive dedication, absence of 24/7 coverage, and unavailability of capable family caregivers. The networks' response to hospital admissions and patient transitions from hospital to home, with access to the specialized team, was also inadequate. Conclusions: Health care professionals aim to increase patients' time spent at home, reduce emergency department visits, and minimize hospitalizations by leveraging the resources of the national palliative care network. In addition to investments to sustain network implementation and legally guaranteed palliative care rights, the country must focus on measurable indicators for evaluating and monitoring actions, providing better guidance in the short, medium, and long term. [ABSTRACT FROM AUTHOR]

Background: French laws governing end-of-life medical practices forbid euthanasia and affirm patients' right to deep and continuous sedation until death. Cultural traditions and disparities in health care provision, as in overseas France, could limit the enforcement of such laws and modify end-of-life medical practices. Aim: This research aims to describe end-of-life medical decisions in overseas France and to compare with those described in mainland France. Methods: A retrospective study of a random sample of adult patients who died between March 2020 and February 2021 was conducted in four overseas French departments. Physicians who certified the deaths were asked to describe end-of-life care and medical decisions in a questionnaire. Results: A total of 1815 deaths were analysed over 8730 questionnaires sent. Withholding treatments was the most frequent decision (41%), treatment for pain or symptoms was intensified for a third of patients, Deep and continuous sedation until death was implemented in 13.3% cases. The use of drugs to deliberately end life was mentioned in 1.3% deaths. At least one decision was made in 61.6% deaths. More decisions that may hasten death were made before predictable deaths. Intensification of pain and symptoms treatment was more frequent in 2022 than in 2010. Deep and continuous sedation was introduced by law in 2016 without prejudice to other decisions. Conclusion: Physicians in overseas France have implemented recent changes in end-of-life laws, including deep and continuous sedation. Comparisons with 2010 mainland France survey show a better implementation of palliative medicine in 2022, with higher proportions of treatment withholding. [ABSTRACT FROM AUTHOR]

Background: Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly. Aims: To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care. Methods: This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions. Results: In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family's burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable. Conclusion: The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults. [ABSTRACT FROM AUTHOR]

Background: This study addresses the issue of shared decision-making (SDM) in a Norwegian home-based palliative care setting. The significance of patient involvement in SDM is widely acknowledged, and many patients want to participate in decisions about care and treatment. Yet, it remains a need for more knowledge regarding the initiators and approaches of SDM in the context of home-based palliative care, particularly from the patients' perspective. The aim of this study is to understand patients' experiences and preferences for SDM in home-based palliative care, seeking to enhance the quality of care and direct the planning of healthcare services. Methods: We used a qualitative explorative design. A hermeneutic approach was employed, and data was collected through in-dept interviews with 13 patients. Results: The study uncovered an overarching theme of "Navigating to reach own decisions," comprising three sub-themes: "To be trapped in life without decisions to act on"; "To surrender to others and let others deal with decisions"; "To continue to be oneself without focusing on disease and decision-making". Conclusions: The findings underscore the need for flexible, person-centered approaches in SDM, tailored to the fluctuating health literacy and changing preferences of patients in palliative care settings. Our study contributes to the understanding of SDM in palliative care by highlighting how patients navigate the balance between autonomy and reliance on HCPs. Future research should explore how healthcare systems, including HCPs' roles in the system, can adapt to the patients' dynamic needs, to ensuring that SDM will remain a supportive and empowering process for patients at all stages of their disease. [ABSTRACT FROM AUTHOR]

Background: Advance care planning is a process of discussion that enables competent adults to express their wishes about end-of-life care through periods of decisional incapacity. Although a number of studies have documented social workers' attitudes toward, knowledge about, and involvement in advance care planning, the information is fragmented. The purpose of this review was to provide a narrative synthesis of evidence on social workers' perspectives and experiences regarding implementation of advance care planning. Methods: Six databases were searched for peer-reviewed research papers from their respective inception through December 2016. All of the resulting studies relevant to both advance care planning and social worker were examined. The findings of relevant studies were synthesized thematically. Results: Thirty-one articles met the eligibility criteria. Six research themes were identified: social workers' attitudes toward advance care planning; social workers' knowledge, education and training regarding advance care planning; social workers' involvement in advance care planning; social workers' perceptions of their roles; ethical issues relevant to advance care planning; and the effect of social work intervention on advance care planning engagement. The findings suggest that there is a consensus among social workers that advance care planning is their duty and responsibility and that social workers play an important role in promoting and implementing advance care planning through an array of activities. Conclusions: This study provides useful knowledge for implementing advance care planning through illustrating social workers' perspectives and experiences. Further studies are warranted to understand the complexity inherent in social workers' involvement in advance care planning for different life-limiting illnesses or within different socio-cultural contexts. [ABSTRACT FROM AUTHOR]

Background: Volunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad. Aim: This study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units? Methods: We undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory. Results: Analysis of the interviews revealed three typical characteristics of how hospice volunteers' describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a "teacher". Conclusion: Granting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices. [ABSTRACT FROM AUTHOR]

Background: Developments in digital health have the potential to create new opportunities for healthcare professionals support delivery of palliative care. Globally, many palliative care professionals used digital health innovations to support communication with staff, patients and caregivers, during COVID-19 pandemic. However, there is limited data about the views of palliative care professionals of using digital health to support communication during the pandemic. We aimed to describe how palliative care professionals used technology to support communication (multidisciplinary team working, education and with patients and family caregivers) during the COVID-19 pandemic. Method(s): UK based palliative care healthcare professionals completed an electronic questionnaire to describe their use of digital health, during the COVID-19 pandemic, to support (1) communication within the multidisciplinary team (MDT), (2) education and (3) to support communication with patients and carers. Results: Two hundred and thirty-four palliative care professionals participated. Most (n = 227, 97%) described an increase in their use of digital health, to support communication, since the start of the COVID-19 pandemic. We identified benefits and challenges for digital health communication, which we summarised into themes, including 'a new way of working', 'developing a new approach to learning' and 'impacting care'. Conclusion(s): Since the pandemic, palliative care professionals have increased their use of digital health to support communication in clinical practice. We have identified facilitators and barriers for future practice. Further work should identify the levels of support needed for organisations to ensure that digital health interventions are meaningfully used to help palliative care professionals effectively communicate with patients, caregivers and staff. [ABSTRACT FROM AUTHOR]

Background: Family caregivers are essential in end-of-life care for cancer patients who wish to die at home. The knowledge is still limited regarding family caregivers needs and preferences for support and whether the preferences change during the patient's illness trajectory. Therefore, the aim was to explore family caregivers' preferences for support from home care services over time when caring for a family member with cancer at the end of life who wished to die at home. Methods: A qualitative method was applied according to Grounded Theory. Data was collected longitudinally over the illness trajectory by means of repeated individual interviews (n = 22) with adult family caregivers (n = 11). Sampling, data collection and data analysis were undertaken simultaneously in line with the constant comparative method. Results: The findings are captured in the core category "hold out in duty and love". The categories "having control and readiness for action" and "being involved in care" describe the family caregivers' preferences for being prepared and able to handle procedures, medical treatment and care, and to be involved by the healthcare personnel in the patient's care and decision making. The categories "being seen and confirmed" and "having a respite" describe family caregivers' preferences for support according to their own needs to be able to persevere in the situation. Conclusion: Despite deterioration in the patient's illness and the increasing responsibility family caregiver struggle to hold out and focus on being in the present. Over time together with deterioration in the patient's illness and changes in the situation, they expressed a need for more intense and extensive support from the home care services. To meet the family caregivers' preferences for support a systematic implementation of a person-centred care model and multicomponent psycho- educational interventions performed by nurses can be proposed. Moreover, we suggest developing a tool based on the conceptual model generated in this study to identify and map family caregivers' needs and preferences for support. Such a tool can facilitate communication and ensure person-centred interventions. [ABSTRACT FROM AUTHOR]

Background: Palliative care requires a multidisciplinary team to assist patients and their families to obtain good quality care at the end of life. Typically, community pharmacists have fewer opportunities to provide services for patients with palliative care needs than hospital pharmacists. Moreover, home-based palliative care (HBPC) by pharmacists remains low and there is a lack of research regarding HBPC provided by pharmacists. Therefore, this study sought to understand the views and reflections of community pharmacists in the clinical frontline providing palliative home services. Methods: Purposive sampling was used to recruit six community pharmacists for one-on-one, in-depth, semi-structured interviews and the data were analysed using thematic analysis. Results: Five major themes emerged: [1] Engagement, [2] Challenge, [3] Mission, [4] Career metamorphosis, and [5] Outlook. The pharmacists described how they engaged in HBPC and faced the challenges. They regarded opioid management as a burden. Moreover, some mentioned that reimbursement for palliative home care is low or non-profitable. They suggested building a platform to exchange advice and legislation adjustments so that they could pass on their experiences to less experienced pharmacists in HBPC. Conclusions: The involvement of pharmacists is crucial to provide better palliative care. Although the present study was small and might not fully represent the whole situation, the findings could still inform future education, training, and policy planning to promote pharmacists' participation in palliative care to generalise community palliative care. [ABSTRACT FROM AUTHOR]

Background: Effective cooperation between a pediatric palliative care team (PPCT), primary treating specialists, patients and families is crucial for high quality care of children with complex life-limiting conditions. Several barriers among patients, families and treating specialists have been identified in the context of initializing pediatric palliative care. The aim of the study was to assess the experience with initial pediatric palliative care consultations from perspectives of family caregivers and treating physicians with a special focus on two innovative approaches: attendance of the treating specialist and the opportunity for parents to give feedback on the written report from the consultation. Methods: This was a qualitative study using semi-structured interviews with family caregivers of children with malignant and non-malignant disease and their treating specialists. Framework analysis was used to guide the data collection and data analysis. Results: In total, 12 family caregivers and 17 treating specialists were interviewed. Four main thematic categories were identified: (1) expectations, (2) content and evaluation, (3) respect and support from the team and (4) consultation outcomes. Parents viewed the consultation as a unique opportunity to discuss difficult topics. They perceived the attendance of the treating specialist at the initial consultation as very important for facilitating communication. Treating specialists valued the possibility to learn more about psychosocial issues of the child and the family while attending the initial palliative care consultation. All participants perceived the written report from the consultation as useful for further medical decisions. Family members appreciated the chance to give feedback on the consultation report. Conclusions: Our study identified several clinically relevant issues that can help initialize pediatric palliative care and establish effective collaboration between families and PPCT and treating specialists. Supporting treating specialists in their ability to explain the role of palliative care is important in order to reduce the risk of misunderstanding or unrealistic expectations. Developing more specific expectations seems to be one of the ways to further increase the effectiveness of initial consultations. The results of the study can be especially helpful for the initial phase of implementing pediatric palliative care and initializing the process of setting up a collaborative relationship with palliative care teams in the hospital. [ABSTRACT FROM AUTHOR]

Background: This paper focuses on the sustainability of existing palliative care teams that provide home-based care in a shared care model. For the purposes of this study, following Evashwick and Ory (2003), sustainability is understood and approached as the ability to continue the program over time. Understanding factors that influence the sustainability of teams and ways to mitigate these factors is paramount to improving the longevity and quality of service delivery models of this kind. Methods: Using qualitative data collected in interviews, the aim of this study is twofold: (1) to explore the factors that affect the sustainability of the teams at three different scales, and; (2) based on the results of this study, to propose a set of recommendations that will contribute to the sustainability of PC teams. Results: Sustainability was conceptualized from two angles: internal and external. An overview of external sustainability was provided and the merging of data from all participant groups showed that the sustainability of teams was largely dependent on actors and organizations at the local (community), regional (Local Health Integration Network or LHIN) and provincial scales. The three scales are not self-contained or singular entities but rather are connected. Integration and collaboration within and between scales is necessary, as community capacity will inevitably reach its threshold without support of the province, which provides funding to the LHIN. While the community continues to advocate for the teams, in the long-term, they will need additional supports from the LHIN and province. The province has the authority and capacity to engrain its support for teams through a formal strategy. The recommendations are presented based on scale to better illustrate how actors and organizations could move forward. Conclusions: This study may inform program and policy specific to strategic ways to improve the provision of team-based palliative home care using a shared care model, while simultaneously providing direction for team-based program delivery and sustainability for other jurisdictions. [ABSTRACT FROM AUTHOR]

Background: Palliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke. However published guidance focuses primarily on the end of life, and there is a gap in the evidence about how the palliative care needs of acute stroke patients and families should be addressed. Synthesising data across a programme of related studies, this paper presents an explanatory framework for the integration of palliative and acute stroke care. Methods: Data from a survey (n=191) of patient-reported palliative care needs and interviews (n=53) exploring experiences with patients and family members were explored in group interviews with 29 staff from 3 United Kingdom stroke services. A realist approach to theory building was used, constructed around the mechanisms that characterise integration, their impacts, and mediating, contextual influences. Results: The framework includes two cognitive mechanisms (the legitimacy of palliative care and individual capacity), and behavioural mechanisms (engaging with family; the timing of intervention; working with complexity; and the recognition of dying) through which staff integrate palliative and stroke care. A range of clinical (whether patients are being 'actively treated', and prognostic uncertainty) and service (leadership, specialty status and neurological focus) factors appear to influence how palliative care needs are attended to. Conclusions: Our framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families [ABSTRACT FROM AUTHOR]

Background: Research studies demonstrate that palliative care can improve patient outcomes such as quality of life, symptom burden and patient satisfaction with care (Gomes B, et al. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013(6):CD00776) (World Health Organization. Palliative Care. Published 2020.). While 76% of patients who need palliative care live in limited-resource countries, access to high quality palliative services in these countries is minimal (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care (2nd ed). 2020.). In 2014 the Worldwide Hospice Palliative Care Alliance, with strong endorsement by the WHO, released the Palliative Care Toolkit to provide a training and implementation toolkit for empowering community members to deliver palliative care in resource poor settings (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care at the End of Life. Geneva, Switzerland 2014.). They encouraged researchers and public health practitioners to conduct rigorous evaluation of the toolkit in diverse settings and contexts. To address this need, we will conduct a pilot randomized controlled trial (RCT) to examine implementation and explore potential effect of an intervention based upon the Palliative Care Toolkit, as adapted and used by community health workers (CHWs) working with a cancer center in Kolkata, India to deliver home-based palliative care for rural patients. Methods: Utilizing a randomized controlled trial design, intervention patients (n = 45) receive home-based palliative services (Pal-Care) delivered by community health workers (CHWs), with comparison against a control group of patients (n = 45) who receive usual cancer-center-based palliative services. Primary outcome measures include evaluation of CHW training outcomes, roles and responsibilities of the CHWS and how they assist patients, trial recruitment, stakeholder perceptions of the intervention, and fidelity to study protocol. Secondary outcomes measure patient self-report of health-related quality of life, symptom burden, palliative needs and patient care experience, outcomes The RE-AIM framework guides our evaluation plan to measure the reach, effectiveness, adoption, implementation and maintenance of the Pal-Care intervention (Gaglio B, et al. The RE-AIM framework: a systematic review of use over time. Am J Public Health. 2013;103(6):e38?46.). Data will be analyzed in SAS. All measures will be evaluated overall and by patient age, gender and cancer type and by CHW caseload. Discussion: Pal-Care is a RCT funded by the NCI to explore utilization of CHWs to deliver a home-based palliative care intervention built upon the WHO Palliative Care toolkit (PCT), as compared to a usual care control group. The long-term goal of this research is to develop an effective and sustainable model for delivering home-based palliative care for cancer patients in underserved areas. Trial registration (TRN): ClinicalTrials.gov ID# NCT04972630. [ABSTRACT FROM AUTHOR]

Background: Patients suffering from chronic and life-threatening diseases receive inadequate palliative care in low-income countries, eventually leading to poor quality of life for these patients. Little is known about the experience of delivering palliative care in a low-resource country such as Ghana in comparison to higher-income countries. This study, therefore, aimed to assess the roles and challenges of nurses providing palliative care services for patients with cancer and life-limiting conditions at tertiary Hospitals in Ghana. Methods: Thirty oncology nurses at a tertiary Hospital in Ghana participated. All nurses were providing end-of-life care to patients with cancer. A qualitative exploratory-descriptive design and a semi-structured interview guide developed by the researchers were used. Interviews lasted on average forty minutes to 1 h were audio-recorded, and transcribed verbatim. Content analysis was carried out to generate themes and sub-themes. Findings: Participants were between the ages of 25 and 40 years. A higher percentage of females (n = 17, 57%) participated in the study than males (n = 13, 43%). Two main themes were generated which were the delivery of palliative care and the provision of home care services. The current roles of nurses were centered around pain management, home care services, spiritual needs, and psychological care. Challenges that hindered the implementation of palliative care included distress over expected and unexpected patient mortality, difficulty delivering bad news to patients and families, and frustration with health system resource shortages that negatively impacted patient care. Conclusion: Palliative care is one of the essential services provided for patients with life-limiting conditions, and nurses play an active role in the provision of this care. Further research is needed to determine the most effective ways to deliver this care, particularly in developing nations like Ghana. [ABSTRACT FROM AUTHOR]

Background: To improve transmural palliative care for older adults acutely admitted to hospital, the PalliSupport intervention, comprising an educational programme and transmural palliative care pathway, was developed. This care pathway involves timely identification of palliative care needs, advance care planning, multidisciplinary team meetings, warm handover, and follow-up home visits. With this study, we evaluate changes in patient-related outcomes and transmural collaboration after implementation of the care pathway. Methods: We conducted a before-after study, in which we compared 1) unplanned hospital admission and death at place of preference and 2) transmural collaboration before implementation, up to six months, and six to 18 months after implementation. Data from palliative care team consultations were collected between February 2017 and February 2020 in a teaching hospital in the Netherlands. Results: The palliative care team held 711 first-time consultations. The number of consultation, as well as the number of consultations for patients with non-malignant diseases, and consultations for advance care planning increased after implementation. The implementation of the pathway had no statistically significant effect on unplanned hospitalization but associated positively with death at place of preference more than six months after implementation (during/shortly after adjusted OR: 2.12; 95% CI: 0.84–5.35; p-value: 0.11, long term after adjusted OR: 3.14; 95% CI: 1.49–6.62; p-value: 0.003). Effects on transmural collaboration showed that there were more warm handovers during/shortly after implementation, but not on long term. Primary care professionals attended multidisciplinary team meetings more often during and shortly after implementation, but did not more than six months after implementation. Conclusions: The pathway did not affect unplanned hospital admissions, but more patients died at their place of preference after implementation. Implementation of the pathway increased attention to- and awareness for in-hospital palliative care, but did not improve transmural collaboration on long-term. For some patients, the hospital admissions might helped in facilitating death at place of preference. [ABSTRACT FROM AUTHOR]

Background: Providing care for ageing and vulnerable people with intellectual disability (ID) is challenging, and professionals working in ID care often have limited experience in palliative care. The current study provides insight into palliative care practices in ID care services and competencies of professionals and identifies ways to improve palliative care for people with ID. Methods: For this study ten services in the Netherlands were recruited that provide care for people with mild to profound ID. Professionals in each of these services conducted a self-assessment of their palliative care policies and practices based on nine core element of palliative care described in the Dutch Quality Framework for Palliative Care. The self-assessment included a medical file review of a total of 100 people with ID who died non-suddenly. In addition, 424 professionals from the services returned a digital questionnaire on palliative care competencies and training needs. Results: The self-assessments showed that individual care plans were recorded for people with ID and that multidisciplinary teams provided physical, psychological, social and spiritual care. However, other core elements of palliative care, such as cooperation with other organisations and expertise in palliative care, were less present in ID care services. Only half of the services collaborated with regional organisations in palliative care, and most services listed no requirements for the palliative care skills of their professionals. The questionnaire showed that almost 10% of the professionals reported that they were not at all competent in providing palliative care, and 74% felt that they needed training in palliative care. Reported areas for improvement in the provision of palliative care were increasing the quality of palliative care, improving the expertise of professionals and identifying palliative care needs earlier. Conclusions: To improve palliative care in ID care services changes are required both in competencies of professionals, and organisational policies and practices. Services should enhance awareness about palliative care for people with ID, strengthen collaboration with palliative care services, and offer training or support for professionals in assessing and meeting the needs of people with ID at the end of life. [ABSTRACT FROM AUTHOR]

Background: Psychological distress is common in patients with cancer; interfering with physical and psychological wellbeing, and hindering management of physical symptoms. Our aim was to systematically review published evidence on non-pharmacological interventions for cancer-related psychological distress, at all stages of the disease. Methods: We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The review was registered on PROSPERO (CRD42022311729). Searches were made using eight online databases to identify studies meeting our inclusion criteria. Data were collected on outcome measures, modes of delivery, resources and evidence of efficacy. A meta-analysis was planned if data allowed. Quality was assessed using the Mixed Methods Appraisal Tool (MMAT). Results: Fifty-nine studies with 17,628 participants were included. One third of studies included mindfulness, talking or group therapies. Half of all studies reported statistically significant improvements in distress. Statistically significant intervention effects on distress were most prevalent for mindfulness techniques. Four of these mindfulness studies had moderate effect sizes (d = -0.71[95% CI: -1.04, -0.37] p < 0.001) (d = -0.60 [95% CI: -3.44, -0.89] p < 0.001) (d = -0.77 [CI: -0.146, -1.954] p < 0.01) (d = -0.69 [CI: -0.18, -1.19] p = 0.008) and one had a large effect size (d = -1.03 [95% CI: -1.51, -0.54] p < 0.001). Heterogeneity of studies precluded meta-analysis. Study quality was variable and some had a high risk of bias. Conclusions: The majority of studies using a mindfulness intervention in this review are efficacious at alleviating distress. Mindfulness—including brief, self-administered interventions—merits further investigation, using adequately powered, high-quality studies. Systematic review registration: This systematic review is registered on PROSPERO, number CRD42022311729. [ABSTRACT FROM AUTHOR]

Background: New Zealand recently introduced law permitting terminally ill people to request and receive assisted dying (AD) in specified circumstances. Given the nature and complexity of this new health service, research is vital to determine how AD is operating in practice. Objective: To identify research priorities regarding the implementation and delivery of AD in New Zealand. Methods: Using an adapted research prioritisation methodology, the researchers identified 15 potential AD research topics. A mixed-methods survey of health professionals was undertaken where respondents were asked to rate the 15 topics according to the relative importance for research to be conducted on each issue. Respondents could also suggest additional research areas, and were invited to participate in a follow-up interview. Results: One hundred and nineteen respondents completed the survey. 31% had some experience with AD. The highest rated research topic was the 'effectiveness of safeguards in the Act to protect people'; the lowest rated topic was research into the 'experiences of non-provider (e.g., administrative, cleaning) staff where assisted dying is being provided'. Respondents suggested 49 other research topics. Twenty-six interviews were conducted. Thematic analysis of interview data and open-ended survey questions was undertaken. Six research themes were identified: general factors related to the wider health system; the experiences of health care providers at the bedside; medico-legal issues; the impact of AD; experiences on the day of dying; and the overall effectiveness of the AD system. Key issues for stakeholders included safety of the AD service; ensuring access to AD; achieving equity for 'structurally disadvantaged' groups; and ensuring the well-being of patients, families/whānau, providers and non-providers. Conclusions: Based on early experiences of the implementation of the AD service, health professionals provide important insights into what research should be prioritised post-legalisation of AD. These findings can be used to shape the research agenda so that research may inform law, policy and best practice. [ABSTRACT FROM AUTHOR]

Background: Up to half of adults with advanced cancer report anxiety or depression symptoms, which can cause avoidance of future planning. We present a study protocol for an innovative, remotely-delivered, acceptance-based, multi-modal palliative care intervention that addresses advance care planning (ACP) and unmet psychological needs commonly experienced by adults with metastatic cancer. Methods: A two-armed, prospective randomized controlled trial (RCT) randomizes 240 adults with Stage IV (and select Stage III) solid tumor cancer who report moderate to high anxiety or depression symptoms to either the multi-modal intervention or usual care. The intervention comprises five weekly two-hour group sessions (plus a booster session one month later) delivered via video conferencing, with online self-paced modules and check-ins completed between the group sessions. Intervention content is based on Acceptance and Commitment Therapy (ACT), an acceptance, mindfulness, and values-based model. Participants are recruited from a network of community cancer care clinics, with group sessions led by the network's oncology clinical social workers. Participants are assessed at baseline, mid-intervention, post-intervention, and 2-month follow-up. The primary outcome is ACP completion; secondary outcomes include anxiety and depression symptoms, fear of dying, and sense of life meaning. Relationships between anxiety/depression symptoms and ACP will be evaluated cross-sectionally and longitudinally and theory-based putative mediators will be examined. Discussion: Among adults with advanced cancer in community oncology settings, this RCT will provide evidence regarding the efficacy of the group ACT intervention on ACP and psychosocial outcomes as well as examine the relationship between ACP and anxiety/ depression symptoms. This trial aims to advance palliative care science and inform clinical practice. Trial Registration: Clinicaltrials.gov NCT04773639 on February 26, 2021. [ABSTRACT FROM AUTHOR]

Background: Palliative care provision for persons experiencing homelessness is often poor. A threefold consultation service intervention was expected to increase knowledge of palliative care and multidisciplinary collaboration, and improve palliative care for this population. This intervention comprised: 1) consultation of social service professionals by palliative care specialists and vice versa; 2) multidisciplinary meetings with these professionals; and 3) training and education of these professionals. We aimed to evaluate the implementation process and its barriers and facilitators of this service implemented within social services and healthcare organizations in three Dutch regions. Methods: A process evaluation using structured questionnaires among consultants, semi-structured individual and group interviews among professionals involved, and (research) diaries. Qualitative data were analysed using thematic analysis. The process evaluation was structured using the Reach, Adoption, Implementation and Maintenance dimensions of the RE-AIM framework. Results: All three regions adopted all three activities of the intervention, with differences between the three regions in the start, timing and frequency. During the 21-month implementation period there were 34 consultations, 22 multidisciplinary meetings and 9 training sessions. The professionals reached were mainly social service professionals. Facilitators for adoption of the service were a perceived need for improving palliative care provision and previous acquaintance with other professionals involved, while professionals' limited skills in recognizing, discussing and prioritizing palliative care hindered adoption. Implementation was facilitated by a consultant's expertise in advising professionals and working with persons experiencing homelessness, and hindered by COVID-19 circumstances, staff shortages and lack of knowledge of palliative care in social service facilities. Embedding the service in regular, properly funded meetings was expected to facilitate maintenance, while the limited number of persons involved in this small-scale service was expected to be an obstacle. Conclusions: A threefold intervention aimed at improving palliative care for persons experiencing homelessness is evaluated as being most usable when tailored to specific regions, with bedside and telephone consultations and a combination of palliative care consultants and teams of social service professionals. It is recommended to further implement this region-tailored intervention with palliative care consultants in the lead, and to raise awareness and to remove fear of palliative care provision. [ABSTRACT FROM AUTHOR]

Background: Those experiencing socioeconomic deprivation have poorer quality of health throughout their life course which can result in poorer quality of death – with decreased access to palliative care services, greater use of acute care, and reduced access to preferred place of care compared with patients from less deprived populations. Aim: To summarise the current global evidence from developed countries on end-of-life experience for those living with socio-economic deprivation. Design: Integrative review in accordance with PRISMA. A thorough search of major databases from 2010–2020, using clear definitions of end-of-life care and well-established proxy indicators of socio-economic deprivation. Empirical research describing experience of adult patients in the last year of life care were included. Results: Forty studies were included from a total of 3508 after screening and selection. These were deemed to be of high quality; from a wide range of countries with varying healthcare systems; and encompassed all palliative care settings for patients with malignant and non-malignant diagnoses. Three global themes were identified: 1) multi-dimensional symptom burden, 2) preferences and planning and 3) health and social care interactions at the end of life. Conclusions: Current models of healthcare services are not meeting the needs of those experiencing socioeconomic deprivation at the end-of-life. Further work is needed to understand the disparity in care, particularly around ensuring patients voices are heard and can influence service development and delivery. [ABSTRACT FROM AUTHOR]

Background: There has been a global increase in the number of people who are dying of old age. This development implies a need for good palliative care among older persons at the end of life. Here nursing homes have an important role to play. However, the principles of palliative care have not been sufficiently applied in nursing homes, and there is a need to increase the implementation of palliative care in these settings. Therefore the project named Implementation of Knowledge-Based Palliative Care in Nursing Homes (the KUPA project, to use its Swedish acronym) was started as a contribution to filling this knowledge gap. The aim of the present study was to investigate the professionals' experiences of readiness for change to knowledge-based palliative care at nursing homes after the educational intervention within the KUPA project. Methods: The focus group method was used to interview 39 health-care professionals with the aid of semistructured questions based on the Organizational Readiness for Change theoretical framework. Six focus groups were formed at six nursing homes in two counties in southern Sweden. The groups included different types of professionals: assistant nurses, nurses, occupational therapists, physiotherapists and social workers. The analysis was conducted with an abductive approach and included deductive and inductive content analysis. Results: The analysis revealed one overarching theme: hopeful readiness for change in palliative care despite remaining barriers. The main categories were increased knowledge facilitating development, enhanced team spirit, uncertainty about future plans connected with hopeful readiness and remaining organizational barriers. Conclusions: This study adds knowledge and understanding concerning professionals' readiness for change palliative care in nursing homes and shows how ready nursing home settings undertake these changes in practice. The Organizational Readiness for Change theory proved suitable for application in nursing homes to assess the professionals' experiences and to evaluate educational interventions regardless of the organization's readiness for change. Trial registration: ClinicalTrials NCT02708498, first registration 15/03/2016. [ABSTRACT FROM AUTHOR]

Background: In Ghana, prostate cancer is more prevalent than all other cancers, with a mortality rate of 75% partly due to late presentation to the health care facilities. Limited health services provision across the country and shortages of skilled nurses place a significant demand on family caregivers who are often ill-equipped for the caring role, resulting in many challenges. As they are expected to provide complex care at home with little resources, information, and support, the healthcare system rarely addresses the challenging needs of these family caregivers. This study explored the challenges encountered by family caregivers of people with prostate cancer. Methods: We conducted interviews using a descriptive phenomenological approach. Twelve family caregivers of prostate cancer patients were selected through a purposive sampling technique at the Cape Coast Teaching Hospital. All interviews were recorded, transcribed, and analysed using Colaizzi's (1978) data analysis approach. Results: Three main themes were identified as critical challenges: education and training needs, resources and caregiver-nurse relationship issues. Under the three main themes emerged seven sub-themes that collectively hindered the family caregiver's ability to meet the care demands. Sub-themes that emerged were; lack of preparedness towards the caring role, lack of knowledge about condition/ treatment, misconception about the condition, lack of accommodation facilities, financial constraints, poor communication, and poor staff attitude. Conclusion: Caregiving is associated with significant challenges that hinder the family caregiver's ability to care for the patient effectively, further diminishing the caregiver's quality of life and patient care. Therefore, healthcare professionals, especially nurses, should consider these challenges family caregivers face and take measures to obviate them through education, preparation and support. [ABSTRACT FROM AUTHOR]

Background: A previous review on compassion in healthcare (1988-2014) identified several empirical studies and their limitations. Given the large influx and the disparate nature of the topic within the healthcare literature over the past 5 years, the objective of this study was to provide an update to our original scoping review to provide a current and comprehensive map of the literature to guide future research and to identify gaps and limitations that remain unaddressed. Methods: Eight electronic databases along with the grey literature were searched to identify empirical studies published between 2015 and 2020. Of focus were studies that aimed to explore compassion within the clinical setting, or interventions or educational programs for improving compassion, sampling clinicians and/or patient populations. Following title and abstract review, two reviewers independently screened full-text articles, and performed data extraction. Utilizing a narrative synthesis approach, data were mapped onto the categories, themes, and subthemes that were identified in the original review. Newly identified categories were discussed among the team until consensus was achieved. Results: Of the 14,166 number of records identified, 5263 remained after removal of duplicates, and 50 articles were included in the final review. Studies were predominantly conducted in the UK and were qualitative in design. In contrast to the original review, a larger number of studies sampled solely patients (n = 12), and the remainder focused on clinicians (n = 27) or a mix of clinicians and other (e.g. patients and/or family members) (n = 11). Forty-six studies explored perspectives on the nature of compassion or compassionate behaviours, traversing six themes: nature of compassion, development of compassion, interpersonal factors related to compassion, action and practical compassion, barriers and enablers of compassion, and outcomes of compassion. Four studies reported on the category of educational or clinical interventions, a notable decrease compared to the 10 studies identified in the original review. Conclusions: Since the original scoping review on compassion in healthcare, while a greater number of studies incorporated patient perspectives, clinical or educational interventions appeared to be limited. More efficacious and evidence-based interventions or training programs tailored towards improving compassion for patients in healthcare is required. [ABSTRACT FROM AUTHOR]

Background: The role of the resource nurse aims at bridging the gap between the specialist nurses and the nurses who work in non-specialist wards. The role is established internationally and used in a wide area of clinical settings. The resource nurse is promoting evidence-based practice. Patients with life limiting conditions including cancer and other chronic diseases will likely need palliative care during the trajectory of illness. Due to the complexity of palliative care, both interprofessional help and cooperation between levels of healthcare are considered necessary. Aim: The aim of this study was to explore the perceptions and experiences related to the role of the resource nurse in palliative care in the setting of home health care services and hospitals in Norway, from the perspectives of the resource nurses and the ward nurses. Design: The study has an explorative design with a qualitative approach. Methods: Eight individual interviews were conducted. Audiotaped interview material was transcribed verbatim and the data were analysed using systematic text condensation. The encoded data material provided the basis for writing analytical texts that in turn resulted in meaningful descriptions of the different categories. Results: Four resource nurses and four ward nurses participated in individual interviews. Analysis of the data yielded three categories: 1. Expectations of better competence in the ward. 2. Expectations of better cooperation between professions and different levels of healthcare services. 3. Improvements and hindrances. Conclusion: The resource nurse role is underutilized due to heavy workload and inefficient organization of care. Improvements such as sufficient time resources, support from the ward nurse and cooperation with staff nurses, the resource nurses' role could contribute to increased competence and cooperation interprofessionally and between levels of healthcare. [ABSTRACT FROM AUTHOR]

Background: Due to developing demographic changes, including an aging society and the increasing prevalence of non-communicable diseases, Palliative Care is increasingly highlighted as a universal healthcare need. The need for Palliative Care in Armenia is set against the context of an underdeveloped healthcare system. Further, the absence of palliative medicine within medical education, particularly undergraduate education in Armenia presents a major barrier to improving care. This research aimed to assess the perception of young Armenian physicians' understanding of Palliative Care, its perceived status in Armenia and the experience and influence of any engaged Palliative Care education. Methods: Twenty Armenian first-year residents with different specializations were interviewed July and September 2016 regarding: understanding/knowledge, experiences, perceived competence, and expectations of Palliative Care and Palliative Care education. The transcripts from these semi-structured interviews were analyzed using Qualitative Content Analysis. Results: Participants perceived that Armenia's health care system lacked sufficient Palliative Care and Palliative Care education. Although elements of Palliative Care were included in different specialty teaching, this provided just a partial understanding of typical Palliative Care patients/symptoms, approaches to holistic care, and crucially key communication skills. Challenges noted by participants in caring for Palliative Care patients included emotional difficulties, communication of diagnosis/prognosis, uninformed patients and concerns for patients, families, and physicians. Self-confidence in caring for patients with incurable illness varied. Participants hoped for increasing availability and accessibility of Palliative Care, and extension of clinical education in Palliative Care at all levels (undergraduate, postgraduate, specialization). Conclusions: Absence of training has resulted in misconceptions and ignorance of common concepts and practices in Palliative Care. Palliative Care education needs to be systematically developed and integrated into clinical training within Armenia. This research may provide a rallying call for changes within the core curricula in Armenia and may also encourage collaborative development in associated countries of the Caucasus region. [ABSTRACT FROM AUTHOR]

Background: Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. Objectives: To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care. Methods: A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research. Results: Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. Conclusions: The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas. [ABSTRACT FROM AUTHOR]

Background: The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to receive palliative care in the home. The objective of this paper is to summarize the quality and primary outcomes measured within the palliative care in the home literature. This will synthesize the current state of the literature and inform future work. Methods: A scoping review was completed using PRISMA guidelines. PubMed, Embase, CINAHL, Web of Science, Cochrane Library, EconLit, PsycINFO, Centre for Reviews and Dissemination, Database of Abstracts of Reviews of Effects, and National Health Service Economic Evaluation Database were searched from inception to August 2016. Inclusion criteria included: 1) care was provided in the “home of the patient” as defined by the study, 2) outcomes were reported, and 3) reported original data. Thematic component analysis was completed to categorize interventions. Results: Fifty-three studies formed the final data set. The literature varied extensively. Five themes were identified: accessibility of healthcare, caregiver support, individualized patient centered care, multidisciplinary care provision, and quality improvement. Primary outcomes were resource use, symptom burden, quality of life, satisfaction, caregiver distress, place of death, cost analysis, or described experiences. The majority of studies were of moderate or unclear quality. Conclusions: There is robust literature of varying quality, assessing different components of palliative care in the home interventions, and measuring different outcomes. To be meaningful to patients, these interventions need to be consistently evaluated with outcomes that matter to patients. Future research could focus on reaching a consensus for outcomes to evaluate palliative care in the home interventions. [ABSTRACT FROM AUTHOR]

Objectives: Research suggests palliative care to be translated and integrated in non-specialized palliative care services throughout the palliative care continuum across populations and settings. A need has been identified to build on the existing research literature in order to design strong knowledge translation strategies that can be evaluated in future research. The aim was to map strategies for knowledge translation of a palliative approach to care into non-specialized palliative care services for adult patients. The objectives were to explore the primary research activities, the specific type of knowledge translation strategies used, the research designs and study settings for such evaluations along with the major results thereof, and to identify major research gaps in this area. Methods: A scoping review was performed to map the volume and characteristics of research literature (project registered in PROSPERO #2018 CRD42018100663). The ten-year period 2010 to 2019 was searched in six major databases for original articles published in English in which the knowledge translation of a palliative approach for adult patients was evaluated in non-specialized palliative healthcare settings, and all type of empirical data-based research designs. We excluded non-English, non-empirical articles, non-evaluation of knowledge translations, specialized palliative care settings, and other types of publications (i.e. non-original articles). Results: Most of the 183 included articles focused on patients with cancer who were dying in hospitals and in high income countries. Only 13 articles focused on early palliative care. A palette of different strategies was used to implement palliative care in non-specialist palliative settings; no strategy was identified as outstanding. The majority of the articles had unspecified essential components of the research designs. Conclusion: Previous suggestions for utilization of implementation science for knowledge translation of a palliative approach to care into non-specialized palliative care services are confirmed, and established knowledge translation theories can strengthen the field. To advance this specific field of knowledge, meticulously detailed reporting of studies is required as related to research designs, clarifications of contextual influences and mechanisms at work. Specific systematic reviews and meta-syntheses in the field are merited. [ABSTRACT FROM AUTHOR]

Background: Children's palliative and end of life care is underpinned internationally by a commitment to provide care and support in the family's preferred place, which may include home, hospital or hospice. Limited evidence on models of best practice for the provision of children's end of life care at home is available. This realist evaluation of a novel, home-based end of life care service explored what works for whom, how, in what circumstances and why. Methods: Adopting principles of realist evaluation, an initial programme theory (IPT) was developed from multiple data sources including a scoping review, service documentation review, audit of service data, and qualitative data gathered from stakeholder (n = 6) and family interviews (n = 10). Three families who had used the service were identified as case studies and interviews with professionals involved in their care (n = 20) were conducted to test the IPT. The findings informed the revised CMOs illustrating the contexts and mechanisms which underpin how and why the service works and for whom. Results: CMO configurations were identified explaining how and why the service works for families across five core components: anticipatory approach to care planning and delivery, advance care planning, service responsiveness and flexibility, 24/7 nurse-led service with 24-h medical support, and partnership working. Key mechanisms include establishing trusting relationships, building skills and parent confidence to deliver care, early advance care planning discussions with clear documentation, providing a single point of contact for families, workforce planning and resources to deliver the service as intended, effective communication and leadership within and between providers of the service, and use of joint policies and procedures. Recommendations for future development and expansion of the service are also discussed. Conclusions: The findings highlight core components making this service a success and areas of challenge which continue to be addressed as the service develops. With increasing demand for home-based end of life care for children these components provide a structure which can help to guide service development to meet the needs of these families in other regions to ensure that children and families receive good quality care in their place of choice. [ABSTRACT FROM AUTHOR]

Background: To analyze how seven Canadian hospice palliative care (HPC) centres and one national surveillance dataset compare with respect to the collection of forty data elements. Research and service delivery implications of the findings are discussed. Methods: The data sources consisted of data element names and their definitions collected in a computer based format from seven HPC centres and one surveillance dataset. The data elements were structured into five themes: demographic, patient death, support, contact or informal caregiver; program/consultations/service request, and clinical. Each theme contains a number of data elements with a total of 40 elements included in the analysis. Comparative analysis was done on the data elements to compare their names and definitions. Results: Much variation exists in data collection around HPC delivery. Such variation prevents any timely and meaningful comparison of service and care delivery across HPC centres. Patient death data, service/program data and clinical data is particularly varied. Conclusion: Developing a common minimum data set is a logical starting point to help overcome data variations between care centres. Greater coordination is needed between care centres and the development of national standards and policies. Moving towards electronic data collection would help facilitate common policy and practice norms. [ABSTRACT FROM AUTHOR]

Background: Research indicating that people increasingly prefer to die at home suggests that palliative care is likely to play a more prominent role in the future of Canada's health care system. Unfortunately, at a time when research evidence should be informing policy and service delivery, little is known about health service utilization by Canadians at the end of life. One existing mechanism that can help address this gap is provincial administrative health data. The purpose of this study was to explore the potential of administrative health data to identify characteristics of palliative care users, patterns of formal service utilization and predictors of palliative care use. Methods: Bivariate and multivariate analyses were used to examine data from the Capital Health Region, British Columbia Linked Health Databases for the period 1992/93 to 1998/99. The databases examined include continuing care, physician claims, hospital separations, and vital statistics. As the name implies, these databases can be linked at the individual level using unique identifiers so that health services utilization can be tracked across sectors. Results: General patterns of service use among palliative care patients suggest that general practitioner and medical specialist visits have decreased over time and the utilization of hospital beds has increased. Utilization of community-based services (i.e. home support and home nursing care) shows an overall pattern of decline. However, when compared to non-palliative care patients, palliative care patients spent fewer nights in hospital, used fewer hours of home support, and had a greater number of home nursing care visits. Conclusions: Administrative health databases can provide valuable information for examining service utilization patterns over time. However, given that decisions surrounding the designation of palliative care include factors beyond the scope of administrative databases (such as quality of life, personal preferences, social support), these databases should only be seen as one source of information to inform service delivery and policy decision making. [ABSTRACT FROM AUTHOR]

Background: Recently immigrated and ethnic minority patients in Ontario, Canada are more likely to receive aggressive life-prolonging treatment at the end of life in comparison to other patients. To explore this finding further, this survey-based observational study aimed to evaluate satisfaction with the quality of end-of-life care for patients from diverse ethnocultural backgrounds. Methods: The End-of-Life Satisfaction Survey was used to measure satisfaction with the quality of inpatient end-of-life care from the perspective of next-of-kin of recently deceased patients at Sunnybrook Health Sciences Centre in Toronto, Ontario (between March 2012 to May 2019). The primary outcome was the global rating of satisfaction. Associations with patient ethnicity, patient religion, level of religiosity/spirituality, language/communication barriers, and location of death were assessed using univariable and multivariable modified Poisson regression. Secondary outcomes included differences in satisfaction and rates of dying in intensive care units (ICU) among patient population subgroups, and identification of high priority areas for quality-of-care improvement. Results: There were 1,543 respondents. Patient ethnicities included Caucasian (68.2%), Mediterranean (10.5%), East Asian (7.6%), South Asian (3.5%), Southeast Asian (2.1%) and Middle Eastern (2.0%); religious affiliations included Christianity (66.6%), Judaism (12.3%) and Islam (2.1%), among others. Location of death was most commonly in ICU (38.4%), hospital wards (37.0%) or long-term care (20.0%). The mean(SD) rating of satisfaction score was 8.30(2.09) of 10. After adjusting for other covariates, satisfaction with quality of end-of-life care was higher among patients dying in ICU versus other locations (relative risk [RR] 1.51, 95%CI 1.05-2.19, p=0.028), lower among those who experienced language/communication barriers (RR 0.49 95%CI 0.23-1.06, p=0.069), and lower for Muslim patients versus other religious affiliations (RR 0.46, 95%CI 0.21-1.02, p=0.056). Survey items identified as highest priority areas for quality-of-care improvement included communication and information giving; illness management; and healthcare provider characteristics such as emotional support, doctor availability and time spent with patient/family. Conclusion: Satisfaction with quality-of-care at the end of life was higher among patients dying in ICU and lower among Muslim patients or when there were communication barriers between families and healthcare providers. These findings highlight the importance of measuring and improving end-of-life care across the ethnocultural spectrum. [ABSTRACT FROM AUTHOR]

Background: To be able to provide high-quality palliative care, there need to be a number of organizational structures available in the nursing homes. It is unclear to what extent such structures are actually present in nursing homes in Europe. We aim to examine structural indicators for quality of palliative care in nursing homes in Europe and to evaluate the differences in terms of availability of and access to palliative care, infrastructure for residents and families, multidisciplinary meetings and quality improvement initiatives. Methods: A PACE cross-sectional study (2015) of nursing homes in Belgium, England, Finland, Italy, the Netherlands and Poland. Nursing homes (N = 322) were selected in each country via proportional stratified random sampling. Nursing home administrators (N = 305) filled in structured questionnaires on nursing home characteristics. Organization of palliative care was measured using 13 of the previously defined IMPACT structural indicators for quality of palliative care covering four domains: availability of and access to palliative care, infrastructure for residents and families, multidisciplinary meetings and quality improvement initiatives. We calculated structural indicator scores for each country and computed differences in indicator scores between the six countries. Pearson's Chi-square test was used to compute the p-value of each difference. Results: The availability of specialist palliative care teams in nursing homes was limited (6.1–48.7%). In Finland, Poland and Italy, specialist advice was also less often available (35.6–46.9%). Up to 49% of the nursing homes did not provide a dedicated contact person who maintained regular contact with the resident and relatives. The 24/7 availability of opioids for all nursing home residents was low in Poland (37.5%). Conclusions: This study found a large heterogeneity between countries in the organization of palliative care in nursing homes, although a common challenge is ensuring sufficient structural access to specialist palliative care services. Policymakers and health and palliative care organizations can use these structural indicators to identify areas for improvement in the organization of palliative care. [ABSTRACT FROM AUTHOR]

Background: With a growing world population, a longer life expectancy, and more deaths due to chronic diseases, the need for palliative care is increasing. Palliative care aims to alleviate suffering and to promote well-being for patients with progressive, incurable disease or injury. E-Health entails using of information and communication technology for healthcare provision. It is unclear to how patients experience use of eHealth technology within palliative care. Methods: The aim of this study was to describe patients' experiences of eHealth in palliative care. A systematic integrative review was performed using six databases: Cinahl Complete; MEDLINE; PubMed; Psychology and Behavioral Sciences Collection; Nursing and Allied Health; and PsycINFO. Twelve studies met the inclusion criteria of adult patients in palliative care, English language, published 2014–2019: comprising 397 patients. Six studies were from European countries, four from North America, one from South America and one from Oceania. Seven were feasibility or pilot studies. Results: The findings are synthesized in the main theme: E-health applications – promoting communication on patients' and families' terms, and three sub- themes: usability and feasibility of eHealth applications; symptom control and individualized care; and use of eHealth applications increased sense of security and patient safety. Patients' experiences were that eHealth promoted individualized care, sense of security, better symptom management and participation in care. Communication was facilitated by the inherent flexibility provided by technology. Conclusions: E-Health applications seem promising in promoting equal, individualized care, and may be a tool to endorse accessibility and patient participation in palliative care settings. Indications are that eHealth communication resulted in patients and families receiving more information, which contributed to experiences of patient safety and feelings of security. At organizational and societal levels, eHealth may contribute to sustainable development and more efficient use of resources. [ABSTRACT FROM AUTHOR]

Background: While hospitals remain the most common place of death in many western countries, specialised palliative care (SPC) at home is an alternative to improve the quality of life for patients with incurable cancer. We evaluated the cost-effectiveness of a systematic fast-track transition process from oncological treatment to SPC enriched with a psychological intervention at home for patients with incurable cancer and their caregivers. Methods: A full economic evaluation with a time horizon of six months was performed from a societal perspective within a randomised controlled trial, the DOMUS trial (Clinicaltrials.gov: NCT01885637). The primary outcome of the health economic analysis was a incremental cost-effectiveness ratio (ICER), which is obtained by comparing costs required per gain in Quality-Adjusted Life Years (QALY). The costs included primary and secondary healthcare costs, cost of intervention and informal care from caregivers. Public transfers were analysed in seperate analysis. QALYs were measured using EORTC QLQ-C30 for patients and SF-36 for caregivers. Bootstrap simulations were performed to obtain the ICER estimate. Results: In total, 321 patients (162 in intervention group, 159 in control group) and 235 caregivers (126 in intervention group, 109 in control group) completed the study. The intervention resulted in significantly higher QALYs for patients when compared to usual care (p-value = 0.026), while being more expensive as well. In the 6 months observation period, the average incremental cost of intervention compared to usual care was €2015 per patient (p value < 0.000). The mean incremental gain was 0.01678 QALY (p-value = 0.026). Thereby, the ICER was €118,292/QALY when adjusting for baseline costs and quality of life. For the caregivers, we found no significant differences in QALYs between the intervention and control group (p-value = 0.630). At a willingness to pay of €80,000 per QALY, the probability that the intervention is cost-effective lies at 15% in the base case scenario. Conclusion: This model of fast-track SPC enriched with a psychological intervention yields better QALYs than usual care with a large increase in costs. Trial registration: The trial was prospectively registered 25.6.2013. Clinicaltrials.gov Identifier: NCT01885637. [ABSTRACT FROM AUTHOR]

Background: Difficulties in prognostication are common deterrents to palliative care among dementia patients. This study aimed to evaluate the effectiveness of palliative care in reducing the extent of utilization of medical services and the potential risk factors of mortality among dementia patients receiving palliative care. Methods: We surveyed dementia patients involved in a palliative care program at a long-term care facility in Taipei, Taiwan. We enrolled 57 patients with advanced dementia (clinical dementia rating ≥ 5 or functional assessment staging test stage 7b). We then compared the extent of their utilization of medical services before and after the provision of palliative care. Based on multivariable logistic regression, we identified potential risk factors before and after the provision of palliative care associated with 6-month mortality. Results: The utilization of medical services was significantly lower among dementia patients after the provision of palliative care than before, including visits to medical departments (p < 0.001), medications prescribed (p < 0.001), frequency of hospitalization (p < 0.001), and visits to the emergency room (p < 0.001). Moreover, patients dying within 6 months after the palliative care program had a slightly but not significantly higher number of admissions before receiving hospice care (p = 0.058) on univariate analysis. However, no significant differences were observed in multivariate analysis. Conclusions: The provision of palliative care to dementia patients reduces the extent of utilization of medical services. However, further studies with larger patient cohorts are required to stratify the potential risk factors of mortality in this patient group. [ABSTRACT FROM AUTHOR]

Background: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children's to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory. Methods: A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements. Results: Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making. Conclusions: The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition. [ABSTRACT FROM AUTHOR]

Background: Evaluation of palliative care services is crucial in order to ensure high quality care and to plan future services in light of growing demand. There is also an acknowledgement of the need to better understand patient experiences as part of the paradigm shift from paternalistic professional and passive patient to a more collaborative partnership. However, while clinical decision-making is well-developed, the science of the delivery of care is relatively novel for most clinicians. We therefore introduce the Trajectory Touchpoint Technique (TTT), a systematic methodology designed using service delivery models and theories, for capturing the voices of palliative care service users. Methods: We used design science research as our overarching methodology to build our Trajectory Touchpoint Technique. We also incorporated a range of kernel theories and service design models from the wider social sciences. We developed and tested our Trajectory Touchpoint Technique with palliative care patients and their families (n = 239) in collaboration with different hospices and hospital-based palliative care providers (n = 8). Results: The Trajectory Touchpoint Technique is user-friendly, enables systematic data collection and analysis, and incorporates all tangible and intangible dimensions of palliative care important to the service user. These dimensions often go beyond clinical care to encompass wider aspects that are important to the people who use the service. Our collaborating organisations have already begun to make changes to their service delivery based on our results. Conclusions: The Trajectory Touchpoint Technique overcomes several limitations of other palliative care evaluation methods, while being more comprehensive. The new technique incorporates physical, psychosocial, and spiritual aspects of palliative care, and is user-friendly for inpatients, outpatients, families, and the bereaved. The new technique has been tested with people who have a range of illnesses, in a variety of locations, among people with learning disabilities and low levels of literacy, and with children as well as adults. The Trajectory Touchpoint Technique has already uncovered many previously unrecognised opportunities for service improvement, demonstrating its ability to shape palliative care services to better meet the needs of patients and their families. [ABSTRACT FROM AUTHOR]

Background: Many deaths in Norway occur in medical wards organized to provide curative treatment. Still, medical departments are obliged to meet the needs of patients at the end of life. Here, we analyse the electronic patient record regarding documentation of the transition from curative to palliative care (i.e. the 'turning point'). Considering the consequences of these decisions for patients, they have received surprisingly little attention from researchers. This study aims to investigate how the patient record denotes reasons for the shift from curative treatment to palliation and how texts involve voices of the patient and their families. Methods: The study comprised excerpts from electronic patient records retrieved from medical wards in three urban hospitals in Norway. We executed a retrospective analysis of anonymized extracts from 16 electronic patient records, searching for documentation on the transition from curative to palliative care. Results: In the development of the turning point, the texts usually shift from statements about the patient's clinical status and technical findings to displaying uncertainty and openness to negotiation with different textual voices. This shift may represent a need to align or harmonize the attitudes of colleagues, family, and patient towards the turning-point decision. The patient's voice is mostly absent or reported only briefly when, in their notes, nurses gave an account of the patient's opinion. None of the physicians' notes provided a detailed account of patient attitudes, wishes, and experiences. Conclusion: In this article, we have analysed textual representations of patient transitions from curative to end-of-life care. The 'reality' behind the text has not been our concern. As the only documentation left, the patient record is an adequate basis for considering how patients are estimated and cared for in their last days of life. [ABSTRACT FROM AUTHOR]

Background: In Switzerland as in many countries, steady trend is observed in nursing homes to promote writing of advanced directives (ADs). Implementation of ADs reflects the rise in public concern for the persons' right to self-determination and informed decision. The issue of end-of-life conditions is particularly acute in situations with dementia. This article investigates how ADs interventions in nursing homes strive simultaneously to behave in line with the principles of care ethics and with the intention to respond to legally binding instructions. Healthcare to dying residents with dementia in nursing homes is interpreted in light of the Regulation theory. Methods: Nursing home palliative care reference nurses were contacted through questionnaire. One hundred twenty-one addresses were reached, 69 responses were collected, giving a response rate of 57%. In order to deepen the understanding, 10 semi-directive interviews were conducted in 10 different nursing facilities with 12 palliative nurses. Results: Presently, Swiss nursing homes are lacking a model of AD suitable to people with dementia. The study sheds light on dissimilarities in the purpose assigned to ADs' procedure in the different facilities. Discrepancies in end-of-life care practices reveal more the influence of structural and organisational devices specific to each setting than conflicting views on end-of-life care principles. We analyse the interpretation of the Law and its implementation in the participating NHs as compromises that could be accounted for as a form of social regulation. Conclusion: Dementia accentuates the uncertainty inherent to end-of-life trajectories. The implementation of standardised procedures aimed at collecting the wishes of the person deprived of his or her discernment is source of dissonances with regard to the multiple interests involved in these care situations. In this context, the drafting of ADs during end-of-life care in NH correspond to new normative constraints requiring new collective regulation actions. [ABSTRACT FROM AUTHOR]

Background: Volunteers play a significant role in supporting hospice and palliative care in Africa, but little is known about the types of volunteers, their motivations and roles in service delivery. Methods: Palliative care experts from 30 African countries were invited to participate in an online survey, conducted in English and French, that consisted of 58 questions on: socio-demographics, the activities, motivation and coordination of volunteers, and an appraisal of recent developments in volunteering. The questionnaire was pre-tested in Uganda. Quantitative data was analysed descriptively with SPSS v22; answers on open-ended questions were analysed using content analysis. Results: Twenty-five respondents from 21 countries replied to the questionnaire. The typical volunteer was reported to be a female aged between 30 and 50 years. Volunteer roles included, among others: direct patient assistance, providing psychosocial / spiritual support, and assisting patients' families. Respondents considered altruism, civic engagement and personal gain (for a professional career) as volunteers' most significant motivational drivers. One in two respondents noted that recruiting volunteers is easy, and cooperation with the communities was often mentioned as helpful. Trainings mostly occurred before the first assignment, with topics covering the palliative care concept, care, psychosocial support and team work. Half of respondents described recent overall volunteering developments as positive, while the other half described problems primarily with financing and motivation. Most volunteers received transportation allowances or bicycles; some received monetary compensation. Conclusions: The findings show a wide range of volunteering in palliative care. We identified volunteers as typically 30–50 years old, non-professional females, motivated by altruism, a sense of civic engagement and personal gain. Palliative care services benefit from volunteers who take on high workloads and are close to the patients. The main challenges for volunteer programmes are funding and the long-term motivation of volunteers. [ABSTRACT FROM AUTHOR]

Background: Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers -knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization. This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families. Methods: A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis. Results: Four themes were identified: awareness of palliative care, collaboration and communication in palliative care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients' openness to their own needs). Conclusions: To optimize palliative care services utilization, awareness of palliative care, and healthcare professionals' communication and emotion management skills should be enhanced. Additionally, a cultural shift, concerning attitudes and beliefs towards palliative care, should be encouraged. [ABSTRACT FROM AUTHOR]