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Background: Community-based palliative out-of-hours services operate outside normal working hours. However, little is known about the provision and delivery of such care. Aim: The aim of this study was to describe types of provision and delivery of out-of-hours palliative care services provided by UK hospices. Methods: Survey questionnaires were emailed to 150 adult hospices in the UK. Quantitative data were analysed using SPSS and qualitative data subjected to thematic analysis. Findings: Responding hospices (n=57) provided the following types of support: telephone advice 72% (n=41); care at home 70% (n=40); and rapid response 35% (n=20). There were variations between services regarding referral mechanisms, availability and workforce, and integration with statutory services was limited. Conclusion: Variation in the type of provision and delivery of out-of-hours palliative care services alongside limited integration with statutory care have contributed to inequity of access to community-based palliative care, and potentially suboptimal patient and informal caregiver outcomes. [ABSTRACT FROM AUTHOR]

Background: Globally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services. Methods: A national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n = 150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using descriptive content analysis. Results: Eighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n = 21) and infection control screening (n = 12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff. Conclusions: Survey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided. [ABSTRACT FROM AUTHOR]

Background: In 2009, the EAPC published recommendations on standards and norms for palliative care in Europe, and a decade later, wished to update them to reflect contemporary practice. Aim: To elicit consensus on standards and norms for palliative care in Europe, taking account of developments since 2009. Design: A Delphi technique used three sequential online survey rounds, and a final expert consultation (EAPC Board). The original 2009 questionnaire with 134 statements was updated with 13 new concepts and practices following a scoping of the literature between 2009 and 2020 (total: 147 statements). Setting/participants: One contact of Boards of 52 national European organisations affiliated to the EAPC were invited to participate, with subsequent rounds sent to respondees. The EAPC Board (n = 13) approved final recommendations. Results: In Round 1: 30 organisations (14 organisations × two people, 16 organisations × one person, total n = 44) in 27 countries responded (response rate 58% organisations, 82% countries), Round 2 (n = 40), Round 3 (n = 38). 119 statements reached consensus in Round 1, 9 in Round 2, 7 in Round 3. In total 135/145 statements in five domains (terminology, philosophy, levels, delivery, services) reached consensus (defined as >75% agreement), (122) were original EAPC recommendations with 13 new recommendations included emerging specialisms: neonatal, geriatric and dementia care, and better care practices. Seven statements failed to reach consensus and four were removed as irrelevant or repetition. Conclusions: Most recommendations on standards and norms for palliative care in Europe remain unchanged since 2009. Evolving concepts in palliative care can be used to support advocacy. [ABSTRACT FROM AUTHOR]

Background: Internationally, the demand for the provision of high-quality palliative care is increasing exponentially. Japan is a rapidly ageing society and it is therefore important to understand the current context to develop practice and inform future resource allocation in long-term care facilities (LTCFs). Aim: To describe the broad context of palliative care services, practice, education and policies in LTCFs in Japan. Methods: A process of expert elicitation and documentary review undertaken. The WHO palliative care model for public health was used as an analytical framework. Findings: Several deficits were identified regarding palliative care in Japanese LTCFs: a lack of palliative care strategy and standardised training for staff, and limited information on the use of palliative care medicines, quality improvement tools and frameworks. Conclusion: Such deficits need to be addressed to inform current nursing practice, future training needs for staff, quality care initiatives and decision making for advance care planning and resource allocation to respond to the ever-increasing demand for palliative care in these settings. [ABSTRACT FROM AUTHOR]

Background: Most people spend their last year of life at home, with many wishing to die there, but patients may need access to care after hours. Out-of-hours palliative care is delivered by multi-disciplinary teams including Health Care Assistants (HCA). However, little is known about the role, contribution and impact Health Care Assistants have on out-of-hours palliative care services. The aim of this study is to examine the Health Care Assistant role, contribution and impact on service delivery and patient care in out-of-hours community palliative care provided by hospice organisations. Methods and analysis: A mixed methods exploratory study consisting of four phases. Phase one involves a scoping review to systematically map and identify gaps in policy and literature on the HCA role in out-of-hours palliative care. In phase two, all United Kingdom hospices will be invited to participate in an online census to enable the development of a typology of out-of-hours services and the contribution of the Health Care Assistant. During phase three organisational case studies representing different service types will collect information from Health Care Assistants, patients, caregivers and service managers to gather qualitative and quantitative data about out-of-hours service provision and the Health Care Assistant role. Finally, phase four will synthesize and refine results through online focus groups. Ethics and dissemination: Ethical approval has been obtained for phase two through Ulster University Research Governance Filter Committee, Nursing and Health Research. Findings will be disseminated through practitioner and/or research journals, conferences, and social media. [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: Access to community palliative care 'out-of-hours' – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution. Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care. Design: Scoping review Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement. Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient's and family's physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home. Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers. [ABSTRACT FROM AUTHOR]

Objectives: Treatment escalation plans (TEPs) are vital in communicating a ceiling of care. However, many patients still deteriorate and die without a pre-established ceiling of care for attending clinicians to rely on. We aimed to increase the proportion of suitable patients that have TEPs in place in a rural district general hospital.Methods: We undertook three 'Plan-Do-Study-Act' (PDSA) cycles between 1 December 2016 and 9 June 2017. These cycles aimed to assess the problem, implement a solution and monitor its sustainability. We sampled all acute medical admissions at different time points, focusing on the acute medical unit. We identified patients requiring TEP forms using SupportiveandPalliative Care Indicators Tool. Stakeholders were surveyed during the project, and a process communication map was developed to understand the human interfaces that occur when producing a TEP.Results: We sampled a total of 323 patients (PDSA 1, n=128; PDSA 2, n=95; PDSA 3, n=100). Following implementation of a 'talking to your doctor about treatment' leaflet, the proportion of patients who did not have a TEP but required one fell from 43% (n=38, PDSA 1) to 27% (n=20, PDSA 3) then to 23% (n=77, PDSA 3) (CI 0.6631 to 39.917, p=0.028).Conclusions: This study highlights the challenges of TEP form completion. The impact of our intervention appeared to raise awareness of advanced care planning. The information contained in our leaflet could be distributed in more innovative ways to ensure patients unable to access textual information are able to receive this message. [ABSTRACT FROM AUTHOR]

Background: Integrated palliative care aims at improving coordination of palliative care services around patients' anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking. Aim: To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe. Design: Qualitative group interview design. Setting/participants: A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses (n = 66; 46%) and physicians (n = 50; 35%). Results: The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services. Conclusion: Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated palliative care practices across settings. [ABSTRACT FROM AUTHOR]

Background: Although examining perspectives of patients on integrated palliative care organisation is essential, available literature is largely based on administrative data or healthcare professionals' perspectives. Aim: (1) Providing insight into the composition and quality of care networks of patients receiving palliative care and (2) describing perceived integration between healthcare professionals within these networks and its association with overall satisfaction. Design: Cross-sectional explorative design. Setting/participants: We recruited 157 patients (62% cancer, 25% chronic obstructive pulmonary disease, 13% chronic heart failure, mean age 68 years, 55% female) from 23 integrated palliative care initiatives in Belgium, Germany, the United Kingdom, Hungary and the Netherlands. Results: About 33% reported contact with a palliative care specialist and 48% with a palliative care nurse. Relationships with palliative care specialists were rated significantly higher than other physicians (p < 0.001). Compared to patients with cancer, patients with chronic obstructive pulmonary disease (odds ratio = 0.16, confidence interval (0.04; 0.57)) and chronic heart failure (odds ratio = 0.11, confidence interval (0.01; 0.93)) had significantly lower odds of reporting contact with palliative care specialists and patients with chronic obstructive pulmonary disease (odds ratio = 0.23, confidence interval (0.08; 0.71)) had significantly lower odds of reporting contact with palliative care nurses. Perceptions of main responsible healthcare professionals or caregivers in patient's care networks varied across countries. Perceived integration was significantly associated with overall satisfaction. Conclusion: Palliative care professionals are not always present or recognised as such in patients' care networks. Expert palliative care involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their palliative care network. Patients seem satisfied with care provision as long as continuity of care is provided. [ABSTRACT FROM AUTHOR]

Background: Effective integration between hospices, palliative care services and other local health care services to support patients with palliative care needs is an important international priority. A previous model suggests that integration involves a cumulative stepped process of engagement with other organisations labelled as 'support, supplant or supplement', but the extent to which this model currently applies in the United Kingdom is unknown. We aimed to investigate accounts of hospice integration with local health care providers, using the framework provided by the model, to determine how service users and healthcare professionals perceived palliative care services and the extent of integration experienced. Methods: Longitudinal organisational case study methods were employed using qualitative serial interviews (interval 3 months) with patients and family carers focusing on how services responded to their needs; and group interviews with health professionals. Data were audio-recorded, transcribed verbatim, and analysed by qualitative content analysis and combined across data sources. Results: The study focused on four hospices in northern England, including 34 patients (diagnosis: 17 cancer, 10 COPD, 7 heart failure), 65% female, mean age 66 (range 44-89), 13 family carers of these patients (48% partners), and 23 health care professionals. While some care fell short of expectations, all patients reported high levels of satisfaction and valued continuity of care and efficient information sharing. All hospices supported and supplemented local providers, with three hospices also supplanting local provision by providing in-patient facilities. Conclusion: UK hospices predominantly operate in ways that support and supplement other providers. In addition, some also supplant local services, taking over direct responsibility and funding in-patient care. They all contributed to integration with local services, with greater blurring of boundaries than defined by the original model. Integrated care offers the necessary flexibility to respond to changes in patient needs, however, constraints from funding drivers and a lack of clear responsibilities in the UK can result in shortfalls in optimal service delivery. Integrating hospice care with local healthcare services can help to address demographic changes, predominantly more frail older people, and disease factors, including the needs of those with non-malignant conditions. This model, tested in the UK, could serve as an example for other countries. [ABSTRACT FROM AUTHOR]

Background Humour is a complex, dynamic phenomenon that mainly occurs in social situations between two or more people. Most humour research reviews rehearsed as opposed to spontaneous humour and rarely review the patients' perspective. Aim We explore patients' perspectives on the use of humour in health care. We discuss the asymmetrical and divergent humour use between patients and clinical nurse specialists and posit nurses' approaches to risk as a contributing factor. Design A constructivist grounded theory collated researcher-provoked (interviews, observation, field notes, pre-and post-interaction audio diaries) and non-researcher-provoked data (naturally occurring interactions) over 18 months. This paper is based upon four patient focus groups. A constant comparison approach to data collection and analyses was applied using interpretative and illustrative frameworks that balanced what was 'known' and 'unknown' about humour. Setting and participants Patients were recruited from four patient-peer groups. Three audio-taped ( n = 20) and one observed focus group interactions ( n = 12) were undertaken at the groups' regular meeting places. Results Patients hold a broad appreciation of humour and recognize it as being evident in subtle and nuanced forms. Patients wish health-care staff to initiate and reciprocate humour. Conclusion A chasm exists between what patients apparently want with regard to humour use in health-care interactions and what actually transpires. Initiating humour involves risk, and risk-taking requires a degree of self-esteem and confidence. Nurses are, arguably, risk-averse and have low self-esteem. Future research could review confidence and self-esteem markers with observed humour use in nurses and their interactions across a range of specialities. [ABSTRACT FROM AUTHOR]

Abstract: Context: Throughout Europe, there are major differences in the stages of development and in the types of service delivery of palliative care. Consensus on standards and norms for palliative care in Europe is needed for advocacy and health policy decision making. Objectives: To provide an empirical basis for a common understanding of palliative care delivery in Europe. Methods: A two-round, online consensus Delphi study was undertaken with a multiprofessional expert panel of board members of national hospice and palliative care associations in Europe. Results: Respondents represented 80% of the member associations of the European Association for Palliative Care, comprising 96 experts and 35 national hospice and palliative care associations from 22 countries. High to very high consensus was found for common values and principles of palliative care (e.g., autonomy, dignity) and the provision of different levels of palliative care. Lower consensus emerged for concepts such as end-of-life care or terminal care, the demand of services and the composition of palliative care teams. The role of social workers was emphasized, but there was ambiguity about the contribution of psychologists. The need for health professionals without specialist palliative care skills to strengthen their contribution to palliative care provision was emphasized. Conclusion: Overall, this study contributed to a higher level of consensus toward the proposed recommendations. Expert comments underlined the need for clearer definitions and specifications of terms and indicated important topics where cultural issues, geographical aspects, and the local health care setting have to be considered in palliative care. [Copyright &y& Elsevier]

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: Older adults receive most of their end-of-life care in the community, but there are few published data to guide researchers on recruitment to studies in primary care. The aim of this study was to compare recruitment of patients and bereaved carers from general practices in areas with different research network support, and identify challenges in obtaining samples representative of those in need of end-of-life care. Methods: Comparative analysis of recruitment from general practices to two face-to-face interview studies concerned with 1) carers' perceptions of transitions between settings for decedents aged over 75 years and 2) the experiences of older patients living with cancer at the end-of-life. Results: 33 (15% of invitees) patients and 118 (25%) carers were interviewed. Carers from disadvantaged areas were under-represented. Recruitment was higher when researchers, rather than research network staff, were in direct contact with general practices. Most practices recruited no more than one carer, despite a seven fold difference in the number of registered patients. The proportion identified as eligible for patient interviews varied by a factor of 38 between practices. Forty-four Primary Care Trusts granted approval to interview carers; two refused. One gave no reason; a second did not believe that general practitioners would be able to identify carers. Conclusion: Obtaining a representative sample of patients or carers in end-of-life research is a resource intensive challenge. Review of the regulatory and organisational barriers to end-of-life researchers in primary care is required. Research support networks provide invaluable assistance, but researchers should ensure that they are alert to the ways in which they may influence study recruitment. [ABSTRACT FROM AUTHOR]

This study aimed to evaluate health professionals’ views about palliative care provision in prisons in the counties of Cumbria and Lancashire in the North West of England. Seventeen prison healthcare staff and nine specialist palliative care staff participated in semi-structured interviews and 16 prison healthcare staff completed a questionnaire designed to measure knowledge, skills and confidence in relation to palliative care. The findings highlighted tensions between the philosophies of care and custody, and the many challenges in providing palliative care in a custodial setting. This paper presents two illustrative case study examples, and suggests ways in which some of these challenges can be overcome in practice. [ABSTRACT FROM PUBLISHER]

Support for family caregivers is a core function of palliative care. However, there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions. In order to help redress this situation, identification of suitable instruments to examine the caregiving experience and the effectiveness of interventions is required. A systematic literature review was undertaken incorporating representatives of the European Association for Palliative Care’s International Palliative Care Family Caregiver Research Collaboration and Family Carer Taskforce. The aim of the review was to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement). Fourteen of the 62 instruments targeted satisfaction with service delivery and less than half were developed specifically for the palliative care context. In approximately 25% of articles psychometric data were not reported. Where psychometric results were reported, validity data were reported in less than half (42%) of these cases. While a considerable variety of instruments have been administered to family caregivers, the validity of some of these requires further consideration. We recommend that others be judicious before developing new instruments for this population. [ABSTRACT FROM AUTHOR]

The challenges associated with patient-based research in palliative care are well documented. This paper focuses on the ethical challenges and discusses them in the context of a pilot study to explore the palliative-care needs of patients with moderate and severe chronic obstructive pulmonary disease. The main ethical challenge encountered related to problems surrounding the use of terminology, specifically the terms 'palliative care' and 'chronic obstructive pulmonary disease'. The approving ethics committee specified that these terms be removed from all patient materials in order to protect patients from undue distress. The impact of this ethical advice on patients' ability to give fully informed consent is discussed. This paper highlights a requirement for appropriately resourced and well-managed studies in palliative care, and identifies a need for the development of appropriate strategies in order to ensure the informed participation of patients with non-cancer diagnoses in palliative-care research. [ABSTRACT FROM AUTHOR]

The aims of this qualitative study were to identify patients' and family members' experiences of acute stroke and their preferences for end-of-life care. Twenty-eight purposely sampled patients with an acute stroke who had high (n=13) and low (n=15) disability were selected from 191 sequential cases admitted to two general hospitals in north-east England. In addition, 25 family members of other stroke patients were recruited. Views about current stroke services and preferences for end-of-life care were elicited in semi-structured interviews. Communication between patients and family members and healthcare professionals was consistently highlighted as central to a positive experience of stroke care. Honesty and clarity of information was required, even where prognoses were bleak or uncertain. Patients and family members appeared to attach as much importance to the style of communication as to the substance of the transfer of information. Where decisions had been made to shift the focus of care from active to more passive support, families, and where possible patients, still wished to be included in ongoing dialogue with professionals. Where patients were thought to be dying, family members were keen to ensure that the death was peaceful and dignified. Families reported few opportunities for engagement in any form of choice over place or style of end-of-life care. No family member reported being offered the possibility of the patient dying at home. Uncertainty about prognosis is inevitable in clinical practice, and this can be difficult for patients and families. Our findings demonstrate the importance of improving communication between patient, family and health professionals for seriously ill patients with stroke in UK hospitals. [ABSTRACT FROM AUTHOR]

Introduction: Distress is an important problem in palliative care. However, current models of clinical practice emphasise symptom-focused assessment of need, raising problems with integrating complex, and potentially conflicting, assessments of experience. An alternative perspective views distress as the result of the disruptive impact of illness on people's efforts to continue living their daily lives. We explored whether this account of distress may offer new insights into models of clinical care. Subjects and methods: Qualitative, phenomenographic analysis of interviews with a purposive sample of 19 adults with advanced cancer (eight men, 11 at high risk of depression) to explore experiences of distress in the context of on-going efforts of daily living. Results: Distress resulted from threats to aspects of themselves which mattered most to people. By achieving a balance between these disruptive effects and individual supportive capacity, most people were able to maintain continuity of daily life. Distress was identified by some as a productive emotion driving change. However, exhaustion undermined this self-capacity leading to fracturing of daily life, profound distress, and the need for external help to restore daily living. This is summarised in our self-integrity model (SIM). Conclusions: Understanding distress in the context of the effort of daily life, rather than individual symptoms, may support a holistic assessment of need; the assessment process itself acting as a support for self-agency. A clinical trial of symptom-based versus SIM-informed assessment of need could support development of an individual-focused, holistic assessment of need. [ABSTRACT FROM AUTHOR]

Bereavement support services are recognised as an integral part of hospices and palliative care services. Exploratory surveys on the nature of such services have been conducted in recent years in several countries, including the USA, UK and Australia. The purpose of this paper is to compare the main findings of these surveys and to offer preliminary suggestions on how to improve this component of care both within and across these three countries. Through this comparison, a number of common aspects of service delivery were highlighted. Common difficulties were also found, including low numbers of paid staff, variations in specialist training, insufficient levels of funding, and the lack of the use of validated bereavement assessment tools. Bereavement support is an important aspect of hospice and palliative care service delivery. In all countries, further research and policy development is required to address the common difficulties. [ABSTRACT FROM AUTHOR]

After an anxious wait following a prolonged gestation, the Department of Health's (DH) End of Life Care Strategy for England was delivered on July 16 2008. As is common at all births, there were many congratulatory statements in the press and claims of a bright, new future. Does this strategy really represent the birth of a new age — one in which a 'good death' will be available to all in England? in this short commentary, I offer my reflection on what this strategy promises and what challenges tie ahead, and what the new policy may mean for cancer nurses. [ABSTRACT FROM AUTHOR]

Concerns remain that health and social care services often fail people dying of chronic illnesses other than those with cancer. British government policy aims to improve end-of-life care and to enable people to make choices about place of care near the end of life, with the assumption that home is often the preferred option. However, some elderly people may lack suitable social networks, family carers and other resources to remain at home. Community hospitals offer a potentially accessible resource for local provision of end-of-life care. They have the advantage of being located within easy reach for family members, are staffed by local people and in most of them, general practitioners can maintain continuity of care. This paper examines patients’ and family carers’ experiences of end-of-life care in community hospitals. In-depth organisational case studies were conducted in six community hospitals in the south of England. Interviews were undertaken with elderly patients dying of cancer and other advanced conditions ( n = 18) and their family carers ( n = 11). Qualitative analysis of transcribed interviews were undertaken, using the principles of grounded theory. Patients and family carers valued the flexibility, local nature (which facilitated visiting) and personal care afforded to them. Most participants regarded community hospitals as preferable to larger district general hospitals. Our research reveals that these participants regarded community hospitals as acceptable places for end-of-life care. Finally, we discuss the implications of our findings for improving end-of-life care. [ABSTRACT FROM AUTHOR]

Objectives: To understand the knowledge, skills and confidence of doctors, nurses and other healthcare workers in delivering end-of-life care in community hospitals. Research design: A cross-sectional questionnaire survey was carried out to evaluate doctors', nurses' and other staff's self-reported knowledge and confidence in delivering general aspects of end-of-life care in six community hospitals in the South West and South East of England. Approximately 900 hours of non-participant observation was conducted. Participants: Staff associated with community hospitals were invited to complete a questionnaire and 346 questionnaires were distributed, with 125 returned (response rate 36%). The sample consisted of: medical staff (n = 31), nursing staff (n = 44), health care assistants (n = 22) and other professional workers (n = 28). Results: Staff reported having knowledge, skills and confidence in symptom control but had less expertise in psychological, spiritual and bereavement care. End-of-life care needs to be delivered by a multidisciplinary team. Our findings indicate that further education is required in psychosocial care. [ABSTRACT FROM AUTHOR]

Background: Few studies shed light on what motivates or discourages patients, carers and professionals for participating in user involvement activities. Aim: To identify motivational factors that affect the engagement of service users and professionals with user-involvement activities. Methods: As part of a larger scoping study of user involvement in palliative care, 51 semistructured interviews were conducted with service users, palliative care professionals and experts to explore experiences of user-involvement initiatives. Four user-involvement programmes were also observed. Data were analysed using a thematic analysis technique. A subsequent consultation meeting with 48 service users and professionals discussed the preliminary findings. Results: User involvement has been predominantly developed through a 'top-down' professional agenda. A few highly motivated individuals, both service users and palliative care professionals, are extremely influential in starting and maintaining user involvement. Reported benefits include personal satisfaction and status but barriers are tokenism and time pressures. [ABSTRACT FROM AUTHOR]

The objective of this study was to explore the attitudes of older people and primary care professionals towards communication of diagnosis, prognosis and symptoms in heart failure. Forty-four interviews were conducted with people aged > 60 years with heart failure (New York Heart Association III–IV) recruited from general practices in the UK. Ten focus groups were held with primary care professionals involved in heart failure management. Data were analysed thematically with the aid of the NUD*IST computer program. Participants reported problems with communication, including not being given enough information about their condition, or being given complex information that they did not understand. Many understood little about heart failure and the causes of, and ways to manage, their symptoms. Few participants had had discussions about the prognosis with any health professional, and this was confirmed in professional accounts. Difficulties with terminology were frequently reported: a diagnosis of ‘heart failure’ was rarely communicated to patients to avoid causing anxiety. Educational needs were identified by most primary care professionals in relation to heart failure management and specifically in relation to communication. In conclusion, communication was identified as being inadequate within primary care from both the patient and professional perspectives. These findings point to a need for an educational intervention tailored specifically to the need to improve the communication skills of primary care professionals in chronic heart failure. [ABSTRACT FROM AUTHOR]

Background The new General Medical Services contract in England means many GPs have transferred out-of hours work to their primary care organization, with implications for continuity of palliative care in community hospitals. Aim To examine existing arrangements for out-of-hours medical cover in community hospitals, focusing on palliative care. Methods Telephone survey of community hospital managers/ senior nurses across England and Wales. Results Interviews (n=62) revealed nursing staff were satisfied with existing out-of-hours care. Concern was expressed about the future of out-of-hours medical care from GPs as new services will cover larger areas, meaning unknown doctors may attend, taking longer to arrive. Conclusion Arrangements for out-of-hours medical cover in community hospitals are in transition, threatening the continuity of care for dying patients. [ABSTRACT FROM AUTHOR]

This paper highlights some of the challenges encountered when recruiting older people with heart failure into longitudinal, community-based research. It draws on the experience gained in a study to provide insights into the palliative care needs of older people with heart failure and the timing and need for service interventions. Five hundred and forty-two people with heart failure (New York Heart Association (NYHA) stages II–IV) and 213 of their informal carers were recruited from primary care practices in four areas of the UK. Ethical issues arising around gate-keeping, terminology and participant burden are discussed along with challenges faced during the recruitment process. Strategies to increase general practitioner and patient recruitment are provided. The paper concludes that prospective longitudinal studies are of particular relevance to chronic illness, and the complexity of setting up such research must be acknowledged and appropriately resourced. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to explore the experiences of patients with severe heart failure and identify their needs for palliative care. Method: A qualitative design was chosen. Semistructured interviews were used for data collection and patients were interviewed in their homes. The sample consisted of 20 patients with a confirmed diagnosis of heart failure. Patients were between 60 and 83 years. Results: Patients reported difficulties in walking, extreme fatigue and problems managing daily activities. Having to rely on family, friends and neighbours was common, causing feelings of being a burden, loneliness and isolation. Patients talked about dying as well as their fears and frustrations in living with heart failure. Barriers to accessing information and social services were identified. None of these patients had been referred to specialist palliative care services. Conclusions: Patients' experiences were similar to those of patients living with advanced cancer and yet they received little support. Comprehensive routine assessment of the palliative care needs of patients living with severe heart failure is recommended. [ABSTRACT FROM AUTHOR]

Background. Nursing research generally, and palliative care research in particular, has been criticized for generating numerous small scale, often qualitative and/or evaluative studies, from which it is difficult to draw generalizations. Aims. Our aim in this study was to conduct a synthesis of three evaluative studies of palliative care services in the United Kingdom (UK), to ascertain patients’ reported expectations and experiences of specialist care. We also demonstrate how secondary data analysis and synthesis can identify commonalities and differences between services. Methods. Secondary qualitative data analysis was conducted on interview data gathered from 37 patients during three evaluation studies of specialist palliative care services. All studies used formative evaluation methodology. Findings. Four themes were identified: (1) knowledge and information about services, (2) meeting practical and psychosocial needs, (3) lack of control, and (4) family atmosphere. Data are presented to illustrate the presence or absence of these themes in patients’ accounts of their expectations and experiences of each service. Study limitations. Data were collected at different times between 1998 and 2000, and interviews were conducted by different researchers. Conclusions. Synthesizing findings from small scale qualitative studies offers the possibility of demonstrating their applicability beyond local and specific contexts. It is imperative to listen to the experiences of patients and carers as a basis for developing interventions and guidelines for services. The methods proposed in this paper offer the potential for these voices of experience to be heard more widely. [ABSTRACT FROM AUTHOR]

Presents a study that aimed to provide an evidence base of the strategies for and the effectiveness of the transfer of patient/client information between hospital and community settings for elderly people with physical illness. Background on the Health Services Research; Information on the method of systematic review; Several strategies for across discipline searching.

This paper seeks to explore the tension between professionalization and volunteerism in health care. It focuses on the role of volunteers who provide bereavement support services within hospices and palliative care services. The paper draws on evidence from a study of hospice bereavement volunteers conducted in New Zealand. Interviews with 34 co-ordinators, and questionnaires completed by 121 volunteers, from 26 hospices, provided data about the role played by bereavement support volunteers. Differences in the perspectives of co-ordinators and volunteers highlight the tensions between a professionalizing ethos and lay understandings of bereavement. Broader social factors, including the restricted social diversity among volunteers, the perceived value of the lived experience of loss relative to other sources of knowledge, cultural patterns of grief and mourning and asymmetrical power relationships between paid professionals and volunteers, affect how bereavement support services are planned and implemented. This paper proposes that a better conceptual understanding of the role of volunteers in helping others deal with loss and grief is needed. [ABSTRACT FROM AUTHOR]

Objective: To measure patients' perceptions of patient centredness and the relation of these perceptions to outcomes. Design: Observational study using questionnaires. Setting: Three general practices. Participants: 865 consecutive patients attending the practices. Main outcome measures: Patients' enablement, satisfaction, and burden of symptoms. Results: Factor analysis identified five components. These were communication and partnership (a sympathetic doctor interested in patients' worries and expectations and who discusses and agrees the problem and treatment, Cronbach's =0.96); personal relationship (a doctor who knows the patient and their emotional needs, =0.89); health promotion (=0.87); positive approach (being definite about the problem and when it would settle, =0.84); and interest in effect on patient's life (=0.89). Satisfaction was related to communication and partnership (adjusted =19.1; 95% confidence interval 17.7 to 20.7) and a positive approach (4.28; 2.96 to 5.60). Enablement was greater with interest in the effect on life (0.55; 0.25 to 0.86), health promotion (0.57; 0.30 to 0.85), and a positive approach (0.82; 0.52 to 1.11). A positive approach was also associated with reduced symptom burden at one month (=0.25; 0.41 to 0.10). Referrals were fewer if patients felt they had a personal relationship with their doctor (odds ratio 0.70; 0.54 to 0.90). Conclusions: Components of patients' perceptions can be measured reliably and predict different outcomes. If doctors don't provide a positive, patient centred approach patients will be less satisfied, less enabled, and may have greater symptom burden and higher rates of referral. [ABSTRACT FROM AUTHOR]

‘Scraps’: hidden nursing information and its influence on the delivery of care What nurses commonly describe as ‘scraps’ are defined as the personalized recordings of information that is routinely made on any available piece of paper (hence scraps) or in small notebooks. The use of scraps is common in practice and has been noted in research from across the globe. Drawing on an empirical study it is argued that scraps are a unique combination of personal and professional knowledge that informs the delivery of care. The overall aim of the study was to discover how nurses define and communicate information about patients and the delivery of care to each other on an elderly care unit. The processes by which information was constructed and the organizational structure and interactions that influenced this were also identified. The research design was an ethnographic one that involved: observations of formal nursing end of shift reports (23 handovers) and informal interactions between nurses (146 hours); interviews (n + 34) with registered nurses, student nurses and nursing auxiliaries; and analysis of written records. Data were collected from five acute elderly care wards at a district general hospital in the south of England. A grounded theory analysis was undertaken which revealed that scraps may have a significant role in the communication of information and the delivery of care. Therefore a categorization of scraps within three main themes was undertaken. First, the analysis revealed the processes involved in the construction of scraps. Second, the content and role of scraps in influencing the delivery of care was exposed. Finally, the potentially confidential nature of scraps and consequent problems of storage and disposal was recognized. The findings are discussed in relation to a suggested model of the interrelationship between paperwork, scraps, handovers and the delivery of nursing care. It is concluded that scraps are significant... [ABSTRACT FROM AUTHOR]

Evaluates the impact of stroke on informal carers' quality of life. Factors which help carers cope with their caring role; Evaluation of health service provision for stroke carers; Variation in results of interventions directed at improving carer outcomes despite satisfaction of carer with health services.

Background The provision of institutional long-term care for older people varies across Europe reflecting different models of health care delivery. Care for dying residents requires integration of palliative care into current care work, but little is known internationally of the different ways in which palliative care is being implemented in the care home setting. Objectives To identify and classify, using a new typology, the variety of different strategic, operational, and organizational activities related to palliative care implementation in care homes across Europe. Design and methods We undertook a mapping exercise in 29 European countries, using 2 methods of data collection: (1) a survey of country informants, and (2) a review of data from publically available secondary data sources and published research. Through a descriptive and thematic analysis of the survey data, we identified factors that contribute to the development and implementation of palliative care into care homes at different structural levels. From these data, a typology of palliative care implementation for the care home sector was developed and applied to the countries surveyed. Results We identified 3 levels of palliative care implementation in care homes: macro (national/regional policy, legislation, financial and regulatory drivers), meso (implementation activities, such as education, tools/frameworks, service models, and research), and micro (palliative care service delivery). This typology was applied to data collected from 29 European countries and demonstrates the diversity of palliative care implementation activity across Europe with respect to the scope, type of development, and means of provision. We found that macro and meso factors at 2 levels shape palliative care implementation and provision in care homes at the micro organizational level. Conclusions Implementation at the meso and micro levels is supported by macro-level engagement, but can happen with limited macro strategic drivers. Ensuring the delivery of consistent and high-quality palliative care in care homes is supported by implementation activity at these 3 levels. Understanding where each country is in terms of activity at these 3 levels (macro, meso, and micro) will allow strategic focus on future implementation work in each country. [ABSTRACT FROM AUTHOR]

The article offers an analysis on the value of the narrative research as a form of inquiry in palliative care nursing. It provides a discussion on the concept of narrative research and its association to the patients' lives. The author states that narrative researches give practitioners deeper insights into a patient's experience. It points out that the value of narratives in palliative care nursing is that it serves as a channel to improve education and training in patient care.

The article reports that palliative care research has emerged more strongly in recent years and is increasingly associated with university-based schools of nursing in Great Britain, for example, at the universities of Southampton, Manchester and Sheffield to name just a few. In British universities, the national and international quality of research and scholarship is periodically measured during an extensive procedure call the Research Assessment Exercise (RAE). Sadly in RAE terms the quality of nursing research remains bottom for all research assessed at British universities.

Summary: The burden of cancer in Asia is high; 6·1 million new cases were diagnosed in the continent in 2008, which accounted for 48% of new cases worldwide. Deaths from cancer are expected to continue to rise because of ageing populations and modifiable risk factors such as tobacco and alcohol use, diet, and obesity. Most patients who are diagnosed with cancer in Asia have advanced disease that is not amenable to curative treatment, which means that they are likely to have pain and other symptoms and psychosocial concerns. These burdens vary with the economic and political situation of the different countries and are affected by such factors as an absence of screening programmes, insufficient cancer diagnostic and treatment services (especially in sparsely populated and rural areas), legal restrictions on access to drugs to relieve pain, and a medical culture in which quality-of-life considerations are undervalued in relation to imperatives to treat. These issues could be ameliorated by increased investment in cancer screening, removal of restrictions on prescription of opioids, and improvements in medical education to increase recognition of treatment futility. Supportive, palliative, and end-of-life care offer the potential to enhance quality of life, improve pain control, and reduce suffering for patients with cancer and their families, and to give patients a dignified death. All patients should have access to such care—in resource-rich regions these services should be integrated into oncology services, whereas in resource-poor regions they should be the main focus of treatment. The form of care should depend on the economic circumstances within and across countries, and recommendations are made across four resource classifications (basic to maximal) to take account of the diversity of settings in Asia. [ABSTRACT FROM AUTHOR]

Reports on the improvement in the Supportive and Palliative Care for Adults with cancer by the National Institute for Clinical Excellence(NICE). Recommendations for service configurations by NICE guidelines; Role of NICE guidelines in the Supportive and Palliative Care for Adults with cancer; Role of people, organizations, care homes, primary care services in the experience of people with cancer.

Abstract: This study explored the prevalence and burden of symptoms in a community-based sample of patients aged >60 with symptomatic heart failure. Five hundred forty-two patients were recruited from UK general practices. Participants completed the Kansas City Cardiomyopathy Questionnaire every 3 months for 2 years. Data are presented at baseline alongside findings from in-depth interviews with patients and focus groups with primary care professionals. Over half the participants experienced breathlessness and/or fatigue daily. Factors identified as predictive of symptom prevalence and burden were as follows: being female; being staged at New York Heart Association Class III or IV; having symptoms of depression; and having two or more comorbidities. Interviews identified other symptoms, including chest pain, nausea, sleep disruption, and confusion. Participants felt that symptoms restricted activities of daily living. Health professionals reported symptom control as being a concern of patients and identified their own educational needs in this area. Findings suggest that symptom prevalence and burden for this population is high. Primary care professionals should offer comprehensive assessment and treatment of symptoms. [Copyright &y& Elsevier]

The number of older people dying in long-term care facilities (LTCFs) is increasing globally, but care quality may be variable. A framework was developed drawing on empirical research findings from the Palliative Care for Older People (PACE) study and a scoping review of literature on the implementation of palliative care interventions in LTCFs. The PACE study mapped palliative care in LTCFs in Europe, evaluated quality of end-of-life care and quality of dying in a cross-sectional study of deceased residents of LTCFs in 6 countries, and undertook a cluster-randomized control trial that evaluated the impact of the PACE Steps to Success intervention in 7 countries. Working with the European Association for Palliative Care, a white paper was written that outlined recommendations for the implementation of interventions to improve palliative and end-of-life care for all older adults with serious illness, regardless of diagnosis, living in LTCFs. The goal of the article is to present these key domains and recommendations. Transparent expert consultation. International experts in LTCFs. Eighteen (of 20 invited) international experts from 15 countries participated in a 1-day face-to-face Transparent Expert Consultation (TEC) workshop in Bern, Switzerland, and 21 (of 28 invited) completed a follow-up online survey. The TEC study used (1) a face-to-face workshop to discuss a scoping review and initial recommendations and (2) an online survey. Thirty recommendations about implementing palliative care for older people in LTCFs were refined during the TEC workshop and, of these, 20 were selected following the survey. These 20 recommendations cover domains at micro (within organizations), meso (across organizations), and macro (at national or regional) levels addressed in 3 phases: establishing conditions for action, embedding in everyday practice, and sustaining ongoing change. We developed a framework of 20 recommendations to guide implementation of improvements in palliative care in LTCFs. [ABSTRACT FROM AUTHOR]

Abstract: Narrative methods have played a minor role in research with dying patients to date, and deserve to be more widely understood. This article illustrates the utility and value of these methods through the narrative analysis of semi-structured interview data gathered in a series of interviews with two terminally ill cancer patients and their spouses. The methods and findings associated with these two case studies are outlined and discussed. The authors'' contention is that an analytical focus on the naturalistic storytelling of patients and informal carers can throw new light on individuals'' perceived illness states and symptoms, care-related needs, behaviors, and desires. In addition, the juxtaposition of two cases that share a number of markers of risk and need at the end of life illustrates how the narrative analysis of patients'' experiential accounts can assist in uncovering important distinctions between cases that are of relevance to care management. [Copyright &y& Elsevier]