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Background: Understanding the principles and practice of research by health care professionals helps to improve the evidence base for palliative care practice and service delivery. Research is a core competency in palliative care that enables the identification and addressing of problems for patients and their families, establishes best practice and improves ways to manage pain, other symptoms, and concerns. This work was undertaken in the research for all palliative care clinicians (RESPACC) Erasmus+ project. Aim: To identify and develop a set of core research competencies within a structured framework for all members of the multidisciplinary palliative team. Design: A multi-method approach was used including rapid review of literature, Nominal Group Technique, and expert consultation. A quiz to self-assess research competencies outlined within the Framework was produced. Results: The Framework includes 17 competencies organized in 7 domains: The clinical context, Scientific thinking and research design, Ethics and regulatory framework for research, Study and site management, Data management and informatics, Communication and relationships, and Research leadership. In the consultation process 6 of the 17 competencies were considered as required by each individual team member, and 3 to be present within the palliative care team. Conclusion: Using a multi-method approach, the first Palliative Care Research Framework identifying core research competencies for palliative care clinicians has been developed. The aim of the framework was not to transform palliative care clinicians into researchers, but to ensure that clinicians understand the important role of research and its integration into clinical practice. [ABSTRACT FROM AUTHOR]

End-of-life (EOL) care is a crucial public health issue in Hong Kong, and one in which the community social service sector has become increasingly involved, as healthcare policy in the city shifts towards greater emphasis on social relationships in non-medical forms of EOL care. This study used abductive grounded theory methodology to illustrate the dynamics and mechanisms involved in social relationships between dying people (and their families), volunteers, and professionals in community-based social service agencies in Hong Kong. The aims are a) to understand how social relationships influence the experiences of dying people and their families, and b) to engage theoretically with concepts of social capital and compassionate communities to explicate the dynamic and relational processes involved in this phenomenon. Fourteen in-depth interviews with practitioners and two service users affiliated with two community-based EOL care agencies in Hong Kong were conducted. Findings inform a parsimonious three-stage model of social capital development in which relationships between service agency workers and families address a key precondition of social capital through establishing trust, facilitating the accessibility of social capital through cultivating mutuality, and mobilising social capital through collaborating in community EOL care. These processes in turn mitigate community detachment in the EOL experience. [ABSTRACT FROM AUTHOR]

Background: Digital health interventions are becoming increasingly important for adults, children, and young people with cancer and palliative care needs, but there is little research to guide policy and practice. Objectives: To identify recommendations for policy development of digital health interventions in cancer and palliative care. Design: Expert elicitation workshop. Setting: European clinical (cancer and palliative care, adult and pediatric), policy, technical, and research experts attended a one-day workshop in London, England, in October 2022, along with MyPal research consortium members. Methods: As part of the European Commission-funded MyPal project, we elicited experts' views on global, national, and institutional policies within structured facilitated groups, and conducted qualitative analysis on these discussions. Results/Implementation: Thirty-two experts from eight countries attended. Key policy drivers and levers in digital health were highlighted. Global level: global technology regulation, definitions, access to information technology, standardizing citizens' rights and data safety, digital infrastructure and implementation guidance, and incorporation of technology into existing health systems. National level: country-specific policy, compatibility of health apps, access to digital infrastructure including vulnerable groups and settings, development of guidelines, and promoting digital literacy. Institutional level: undertaking a needs assessment of service users and clinicians, identifying best practice guidelines, providing education and training for clinicians on digital health and safe digital data sharing, implementing plans to minimize barriers to accessing digital health care, minimizing bureaucracy, and providing technical support. Conclusions: Developers and regulators of digital health interventions may find the identified recommendations useful in guiding policy making and future research initiatives. MyPal child study Clinical Trial Registration NCT04381221; MyPal adult study Clinical Trial Registration NCT04370457 [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]

Purpose: This study aims to explore the prevalence of CRC survivorship issues and their impact on survivors' quality of life (QoL). Methods: This study utilised a mixed methods sequential explanatory design. Adult CRC survivors between 6- and 60-months post-diagnosis (n = 304) were purposively recruited from three hospitals and twenty-one cancer support centres in Ireland. QoL was evaluated using the EuroQol and FACT-C questionnaires and results compared to population norms. 22 survey participants took part in semi-structured interviews exploring the impact of survivorship issues on their daily lives. Results: While CRC survivors reported QoL outcomes comparable to or better than normative populations, 54% were dissatisfied with their QoL. The most common survivorship issues reported included negative body image (74%), fatigue (68%), sexual dysfunction (66%) and sleep disturbance (59%). Thematic analysis of the qualitative data illustrated survivors' attempts to live with the impact of cancer and its treatment (loss, fear, impact) and striving to contextualise, reframe and understand the consequences of cancer and its treatment (control, vigilance, benefit). Within these themes, the cross-domain impact of less prevalent symptoms including bowel dysfunction (28–57%) and peripheral neuropathy (47%) were widely discussed. Conclusions: Although cancer survivors report positive QoL outcomes, many experience distressing physical, psychological and social effects. The findings suggest less common and difficult to manage symptoms are the greatest source of distress and unmet need. Support and information must be tailored to address survivors' individual needs and preferences for support, informed by holistic person-centred assessment. [ABSTRACT FROM AUTHOR]

Background: A primary caregiver shares the illness experience of the patient and undertakes vital care work, alongside managing the patient's emotions, and is actively involved in care process without being paid. When faced with the palliative care patient's needs, caregivers are affected on multiple levels (physical, psychological and socio-economic), thereby experiencing a moderate or severe burden of care. Aim: To identify assessment instruments for the burden of care for family caregivers that are suitable to be used in clinical practice. Method: A narrative review was conducted using an electronic search in Pubmed, PsychINFO, CINAHL of articles published in English between 2009–2019, using the search terms: 'caregiver/family, caregiver/carer and burden and palliative care/hospice/end of life'. An assessment grid was developed to appraise the clinical use of identified instruments. Results: Of the 568 articles identified, 40 quantitative studies were selected using 31 instruments to measure the caregiver burden of cancer, noncancer and terminally ill patients. Most instruments 23 (74.11%) evaluate the psycho-emotional and, 22 (70.96%) the social domain, 12 instruments (38.7%) focused on the physical domain, three (9.67%) on the spiritual field and six instruments (19.35%) on economic aspects. For the multidimensional instruments, the assessment grid scored highest for the Burden Scale for Family Caregiver (BSFC). Conclusion: The BSFC is the tool that seems to meet the most requirements, being potentially the most useful tool in clinical practice. [ABSTRACT FROM AUTHOR]

The article discusses the European Pal_Cycles Project and transitions in advanced cancer care, which may be precipitated by changes in settings of care, management of care, or goals of care. Consistent communication with patients and families needs to include invitations to participate in advance care planning conversations and goals-of-care discussions. The outcome of the project can be challenging because of disparities in the development of palliative care across European countries.

Background: The number of older people dying in long-term care facilities is increasing; however, care at the end of life can be suboptimal. Interventions to improve palliative care delivery within these settings have been shown to be effective in improving care, but little is known about their implementation. Aim: The aim of this study was to describe the nature of implementation strategies and to identify facilitators and/or barriers to implementing palliative care interventions in long-term care facilities. Design: Scoping review with a thematic synthesis, following the ENTREQ guidelines. Data sources: Published literature was identified from electronic databases, including MEDLINE, EMBASE, PsycINFO and CINAHL. Controlled, non-controlled and qualitative studies and evaluations of interventions to improve palliative care in long-term care facilities were included. Studies that met the inclusion criteria were sourced and data extracted on the study characteristics, the implementation of the intervention, and facilitators and/or barriers to implementation. Results: The review identified 8902 abstracts, from which 61 studies were included in the review. A matrix of implementation was developed with four implementation strategies (facilitation, education/training, internal engagement and external engagement) and three implementation stages (conditions to introduce the intervention, embedding the intervention within day-to-day practice and sustaining ongoing change). Conclusion: Incorporating an implementation strategy into the development and delivery of an intervention is integral in embedding change in practice. The review has shown that the four implementation strategies identified varied considerably across interventions; however, similar facilitators and barriers were encountered across the studies identified. Further research is needed to understand the extent to which different implementation strategies can facilitate the uptake of palliative care interventions in long-term care facilities. [ABSTRACT FROM AUTHOR]

The article focuses on social isolation and disruption to normal cancer services has caused by the Covid-19 is using digital technologies to collect electronic patient-reported outcomes (ePROs) can improve communication. Topics include the identification of unmet needs or symptoms that may otherwise be under-reported, the use of ePROs encourages the active participation of patients their condition, and the potential of using digital platforms to improve palliative care continues to grow.

Purpose: To explore the perspectives of people anticipated to be in their last year of life, family carers, volunteers and staff on the impacts of receiving a volunteer-provided befriending service. Patient participants received up to 12 weeks of a volunteer-provided befriending intervention. Typically, this involved one visit per week from a trained volunteer. Such services complement usual care and are hoped to enhance quality of life.Methods: Multiple case study design (n = 8). Cases were end-of-life befriending services in home and community settings including UK-based hospices (n = 6), an acute hospital (n = 1) and a charity providing support to those with substance abuse issues (n = 1). Data collection incorporated qualitative thematic interviews, observation and documentary analysis. Framework analysis facilitated within and across case pattern matching.Results: Eighty-four people participated across eight sites (cases), including patients (n = 23), carers (n = 3), volunteers (n = 24) and staff (n = 34). Interview data are reported here. Two main forms of input were described-'being there' and 'doing for'. 'Being there' encapsulated the importance of companionship and the relational dynamic between volunteer and patient. 'Doing for' described the process of meeting social needs such as being able to leave the house with the volunteer. These had impacts on wellbeing with people describing feeling less lonely, isolated, depressed and/or anxious.Conclusion: Impacts from volunteer befriending or neighbour services may be achieved through volunteers taking a more practical/goal-based orientation to their role and/or taking a more relational and emotional orientation. Training of volunteers must equip them to be aware of these differing elements of the role and sensitive to when they may create most impact.Trial Registration: ISRCTN12929812. [ABSTRACT FROM AUTHOR]

The article offers information on Digitization and the patient–professional relationship in palliative care. It mentions natural language processing, virtual and augmented reality, automated image interpretation using artificial intelligence, interventional and rehabilitative robotics, and predictive analytics using artificial intelligence.

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]

Current demographic, policy and management changes are a challenge to hospices to develop their volunteering practices. The study upon which this paper is based aimed to explore good practice in volunteer involvement and identify ways of improving care through developing volunteering. The project consisted of a narrative literature review; a survey of volunteer managers; and organisational case studies selected through purposive diversity sampling criteria. A total of 205 staff, volunteers, patients and relatives were interviewed across 11 sites in England in 2012. This article focuses on one of the findings - the place that volunteers occupy between the hospice and the community beyond its walls. External changes and pressures in society were impacting on volunteer management, but were viewed as requiring a careful balancing act to retain the 'spirit' of the hospice philosophy. Honouring the developmental history of the hospice was vital to many respondents, but viewed less positively by those who wished to modernise. Hospices tend to be somewhat secluded organisations in Britain, and external links and networks were mostly within the end-of-life care arena, with few referring to the wider volunteering and community fields. Volunteers were seen as an informal and symbolic 'link' to the local community, both in terms of their 'normalising' roles in the hospice and as providing a two-way flow of information with the external environment where knowledge of hospice activities remains poor. The diversity of the community is not fully represented among hospice volunteers. A few hospices had deliberately tried to forge stronger interfaces with their localities, but these ventures were often controversial. The evidence suggests that there is substantial scope for hospices to develop the strategic aspects of volunteering through greater community engagement and involvement and by increasing diversity and exploiting volunteers' 'boundary' position more systematically to educate, recruit and raise awareness. [ABSTRACT FROM AUTHOR]

Background: The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care Aim: To systematically examine the application of the Delphi technique for the development of best practice guidelines in palliative care Design: A methodological systematic review was undertaken using the databases PubMed, CINAHL, Web of Science, Academic Search Complete and EMBASE. Data sources: Original articles (English language) were included when reporting on empirical studies that had used the Delphi technique to develop guidance for good clinical practice in palliative care. Data extraction included a quality appraisal on the rigour in conduct of the studies and the quality of reporting Results: A total of 30 empirical studies (1997-2015) were considered for full-text analysis. Considerable differences were identified regarding the rigour of the design and the reporting of essential process and outcome parameters. Furthermore, discrepancies regarding the use of terms for describing the method were observed, for example, concerning the understanding of a 'round' or a 'modified Delphi study' Conclusion: Substantial variation was found concerning the quality of the study conduct and the transparency of reporting of Delphi studies used for the development of best practice guidance in palliative care. Since credibility of the resulting recommendations depends on the rigorous use of the Delphi technique, there is a need for consistency and quality both in the conduct and reporting of studies. To allow a critical appraisal of the methodology and the resulting guidance, a reporting standard for Conducting and REporting of DElphi Studies (CREDES) is proposed. [ABSTRACT FROM AUTHOR]

The author reflects on the development of international leadership in palliative care and considers challenges and opportunities for establishing sustainable leadership networks. She highlights examples of diversified palliative care that have adapted to sociocultural context including the Jordanian Palliative and Home Care Strategic Framework and the European Association for Palliative Care. She calls for collaboration between international organizations to ensure growth of palliative care.

Background:The Institute of Medicine report ‘From Cancer Patient to Cancer Survivor’ has drawn widespread attention to the experiences of cancer survivors. Research examining the symptom experiences of survivors are proliferative within the literature but limited by samples which include multiple tumor groups and varying inclusion criteria. This cross-sectional quantitative study seeks to examine pain and quality of life (QoL) in the context of colorectal cancer (CRC) survivorship, as defined by the Institute of Medicine. Material and methods:A purposive sample of CRC survivors (n = 252) attending hospitals and cancer support centers in the Republic of Ireland were recruited between September 2014 and January 2016. Self-rated health (SRH), QoL and pain were assessed in the sample using the EuroQOL questionnaire, the Functional Assessment of Therapy-Colorectal (FACT-C) questionnaire, and symptom experience items. Results:One hundred participants (40%) indicated they had pain on the day of the survey or in the past week. Of those with pain, many also experienced a lack of energy (95%), bowel dysfunction (74%), sleep disturbance (76%) or interference with their ability to enjoy life (75%). Pain was associated with younger age, female gender, current chemotherapy treatment, and previous radiotherapy treatment. Although participants reported positive QoL scores, statistical analysis revealed pain was linked to significantly poorer SRH and overall QoL, and poorer physical, emotional, functional, social/family and CRC-specific wellbeing, compared to those who did not indicate pain. Discussion:Pain was experienced by almost two fifths of CRC survivors up to five years after treatment and was associated with poorer SRH and QoL. In light of these findings, healthcare professionals must endeavor to manage cancer survivors’ needs in a manner which is cognizant of the burden of pain and in the context of other symptoms and morbidities experienced by long-term cancer survivors. [ABSTRACT FROM PUBLISHER]

Background The initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians' use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population. Methods/design This two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage. Discussion This study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care. [ABSTRACT FROM AUTHOR]

Introduction Dying in the preferred place of death is considered to be one of indicators of quality of end-of-life care. Research into health care professionals' knowledge of patients' preferences for place of death is therefore important. The aim of this study was to assess the difference between health care professionals and the general public in their views on where do people not want to die. Methods Secondary analysis of data from a representative survey of the general population and a convenience sample of health care professionals in the Czech Republic. Respondents from the general population were asked where they would not like to die and health care professionals were asked where they think the general population does not want to die. Sample consisted of 1095 respondents from the general population and 1006 health care professionals. Health care professionals were physicians (73.3%) and nurses (26.6%). Results Long-term care facilities and hospitals were identified as the most undesirable settings for place of death. A significant difference in views on hospices was identified: 6% of health professionals compared to 42.2% of the general population (P < 0.001) indicated a preference for people to not die in hospice. Discussion The most unwanted settings for place of death were places where most people die. More research is needed to understand the factors influencing preferences and should feed into policy making. Better promotion of hospice care should be developed to communicate to the general public the differences between hospices and other institutions. [ABSTRACT FROM AUTHOR]

Background This study explored whether scores indicating depression on Patient Health Questionnaire 9 and patient reports of thoughts of self-harm were prognostic factors for survival in advanced cancer. Method Patients with advanced cancer were recruited into the study from palliative care day units and invited to complete measures for depression which included Patient Health Questionnaire 9, and Edinburgh Depression Scale at recruitment, and at 8, 16 and 24 weeks. Results 629 patients were recruited into the study; 139 (22%) died during 6 months follow up and 235 patients (37.4%) died during the study period. The age range of patients recruited was 21-94 years-mean age 66 years and 67% of patients recruited were female. The overall median survival of patients recruited was 37.1 weeks (95% CI 36.0, 39.9 weeks) (range 0-116 weeks). The estimated median survival time of patients whose baseline PHQ9≥9 was 36 weeks with 95% confidence interval of (31, 39) and for patients whose baseline PHQ9<9 was 39 weeks (95% CI 37, 45)-baseline PHQ9 alone was predictive of death. The median survival times were 37.9 weeks for patients who did not indicate thoughts of self-harm and 34.7 weeks for patients who reported thoughts of self-harm at baseline suggesting that risk of death was 1.4 times higher among patients who reported thoughts of self-harm. Limitations Patients were recruited only from within palliative day care units and assessments were made only by validated tools and not by clinical interviews. Conclusions In this large longitudinal study, moderate to severe depression as measured by PHQ9 and patient reports of thoughts of self-harm were associated with earlier mortality. This paper supports the need for supporting patients psychologically at the end of life and specifically in treating depression in this patient group. [ABSTRACT FROM AUTHOR]

RESPACC was an Erasmus + funded project to develop a framework of core research competencies for palliative care (PC) clinicians and supporting education materials (http://www.studiipaliative.ro/projects/research-respacc/). The supporting materials included a self-assessment quiz to guide PC multidisciplinary team members on areas of research understanding that needed further development. The objective was to pilot the self-assessment quiz developed based on the research competency framework for PC clinical teams and test it for face validity and clarity. Methods: A pilot observational study was conducted to test the self-assessment quiz for face validity and clarity. The self-assessment quiz was developed between May-November 2021. It was structured to include questions about each of the competencies in the seven domains of the framework, using the examples. Items within the quiz were responded on a 5-points ordinal scale, with participants identifying their perceived competency as: Novice, Advanced Beginner, Competent, Proficient, Expert (each clearly defined). The quiz was developed in English and then translated into the national languages of partners (Greek, Romanian, Spanish). The quiz was piloted with Romanian PC professionals attending the National Palliative Care Conference. Questions about clarity of the quiz, suggestions for improvements were asked together with some demographic data about participants. Results: Multidisciplinary PC clinicians participated in the pilot testing (18 physicians, 4 nurses, 2 psychologists and 1 physiotherapist). Most (n=15) had less than one year of experience in PC. Participants identified themselves as: Novice (n=5), Advanced beginner (n=9), Competent (n=5), Proficient (n=3), Expert (n=3). All respondents answered all question without difficulties and considered the quiz to be clearly written, well structured and adequate. Conclusions: The self-assessment quiz is easy to use, and may be useful in helping members of PC teams assess their competencies and identify their research education needs. [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]

Background: Place of death represents an important indicator for end-of-life care policy making and is related to the quality of life of patients and their families. The aim of the paper is to analyse the place of death in the Czech Republic and Slovakia in 2011. Research questions were focused on factors influencing the place of death and specifically the likelihood of dying at home. Methods: Whole population data from death certificates for all deaths in the Czech Republic and Slovakia in 2011 were used for bivariate and multivariate analyses. Separate analysis using binary logistic regression was conducted for subpopulation of patients who died from chronic conditions. Results: The majority of population in both countries died in hospitals (58.4% the Czech Republic, 54.8% Slovakia), less than one-third died at home. In case of chronic conditions, death at home was significantly associated with underlying cause of death (cancer and heart failure), being male, age (older than 85, Slovakia only) and higher education (the Czech Republic only). Cancer and heart failure patients had higher chances to die at home than other chronic conditions. Conclusions: Czech and Slovak patients with chronic conditions are more likely to die in hospitals than in some other European Union member countries. This finding should be addressed by policy makers in promoting home hospice care services and education in palliative care for staff in nursing homes and other end-of-life settings. [ABSTRACT FROM AUTHOR]

Abstract: Context: A number of research projects have been conducted that aim to gather data on the international development of palliative care. These data are important for policy makers and palliative care advocates. Objectives: The aim of this article was to provide a critical comparative analysis of methodological approaches used to assess the development and status of palliative care services and infrastructure at an international level. Methods: A selective literature review that focused on the methodological features of eight identified reports was undertaken. Results: Reviewed reports were found to differ in adopted methodologies and provided uneven amounts of methodological information. Five major methodological limitations were identified (lack of theory, use of experts as source of information, grey literature, difficulties in ranking, and the problematic nature of data on service provision). A set of recommendations on how to deal with these issues in future research is provided. Conclusion: Measuring the international development of palliative care is a difficult and challenging task. The results of this study could be used to improve the validity of future research in this field. [Copyright &y& Elsevier]

Objective: Literature reviews suggest limited evidence of efficacy of antidepressant medication in patients with advanced cancer. This study was carried out to observe the longitudinal effect of antidepressant medication in a cohort of advanced cancer patients.Method: Patients were recruited from hospice day care settings and followed up longitudinally by series of measures for depression for 6 months or until death.Results: Six hundred and twenty nine patients recruited. One hundred and fifty six patients in total (25%) were receiving antidepressant medication for a median of 9.5 weeks (range 0–36 weeks) and a mean of 12.2 weeks. There was no significant difference in scores on depression measures over time for patients receiving antidepressant medication.Conclusions: Antidepressant medication for advanced cancer patients appeared to have little impact on depression scores. We postulate the holistic approaches within hospice day care may in themselves be interventions for depression thereby masking effect of pharmacological treatment. Further research should explore multi-intervention models for management of depression in advanced cancer. [ABSTRACT FROM AUTHOR]

Background The background literature suggests that recruiting patients with advanced cancer from hospice day care to participate in a research study may be challenging. Aim This paper describes such challenges and considers whether those faced by researchers in this study reflect those recorded in the literature. Method Six hundred and twenty-six patients with advanced cancer from hospice day care units in the north-west region of England were recruited as part of a multi-centre mixed methods study to determine the prevalence, aetiology, and natural history of depression and demoralization. Results A number of challenges were reported (i) data collection sometimes presented researchers with ethical dilemmas, although the ability to respond appeared to be influenced by disciplinary background and training, (ii) emotional impact of the research may force researchers to face a variety of emotional responses, and (iii) dilemmas relating to the setting and maintenance of role boundaries included determining the level of emotional connection required to establish relationships of trust between researchers and participants, and imbalances in power and status. Discussion Many of the challenges faced by researchers to recruit patients with advanced cancer from hospice day care to participate in this research study were similar to those described in the literature. Conclusion Most researchers reported that the overall experience was positive, although a number of moral and ethical dilemmas required ongoing reflection and continuing support and supervision to resolve. It is hoped that other researchers engaging in similar forms of research in the future can learn from the challenges that have been identified. [ABSTRACT FROM AUTHOR]

Access to palliative care has been advocated as a human right by international associations, based on the right to the highest attainable standard of physical and mental health. It has been argued that failure to provide palliative care for patients facing severe pain could constitute cruel, inhuman, or degrading treatment. Yet the governments of many countries throughout the world have still not acknowledged a human right to access palliative care for all those who need it. The European Association for Palliative Care (EAPC), the International Association for Hospice and Palliative Care (IAHPC), and Human Rights Watch (HRW) discussed this at the EAPC congress in 2011 and formulated the Lisbon Challenge: Governments must: (1) put in place health policies that address the needs of patients with life-limiting or terminal illnesses; (2) ensure access to essential medicines, including controlled medications, to all who need them; (3) ensure that health care workers receive adequate training on palliative care and pain management at undergraduate levels; and (4) facilitate and promote the implementation of palliative care services as part of available health services. [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: Recent end of life care policy prioritises patient choice over place of care and in particular promotes dying at home. This policy is predicated on the assumption that there are family carers able and willing to provide care for the dying person. Through the accounts of bereaved family members, the 'Unpacking the home' study aims to gain an in-depth understanding of 'home' and the issues faced by family members caring for a dying older person at home; it also aims to examine the way the home is transformed in the process of providing end of life care, and offer a critical analysis of policies that aim to increase home deaths. This paper presents the protocol for this study. Methods/design: A cross-sectional qualitative study has been designed to achieve the study aims. In-depth interviews will be conducted in the north and south of England with 50 bereaved family carers to elicit their accounts of witnessing the dying in the home of an older person (50+ years). All interviews will be subjected to thematic analysis, and narrative analysis will be undertaken on a subset of 30 interview transcripts. A final phase of integration and policy analysis will be conducted towards the end of the study. User involvement is integral to this study, with service users actively engaged at every stage. Discussion: This study will seek to take a qualitative approach by explicitly recognising that family carers are central to the experience of dying at home for older people, and they have needs that may be amenable to support and anticipatory planning. The strengths of this study, which include its interdisciplinary and participatory approach, and in-depth data collection and analysis methods, will be explored. The limitations and challenges of this research will also be considered. This study seeks to make recommendations that will ensure that family carers receive appropriate and adequate support in caring for their loved ones at the end of life. [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]

The Liverpool Care Pathway (LCP) for the dying patient is an integrated care pathway that was developed to assist non-specialist palliative care staff care for dying patients in acute clinical areas. The LCP has generated numerous debates among health professionals regarding its strengths and weaknesses. The complexity of patient needs at the end-of-life cannot be underestimated and the LCP provides the foundations of quality evidence-based care patients require, particularly in the final phase of dying. Nevertheless, not all health professionals are in agreement as to the advantages of using integrated care pathways in clinical practice. Despite the attention that has surrounded the LCP there is limited evidence to suggest that it improves end-of-life care. This article examines the evidence in relation to the LCP as a tool to improve palliative care for dying patients and their families in non-specialized palliative care practice [ABSTRACT FROM AUTHOR]

The quality of life of the person confronting the end stages of their life may be severely compromised without the support of family caregivers. Indeed, most people requiring palliative care would not be able to fulfill their preferences, such as care at home, without significant family caregiver input. As a consequence, health services are mandated to support the family alongside the person diagnosed with a life-threatening illness. In short, palliative care is supposed to be family centred. However, the quality and type of support made available to family caregivers has been questioned. The purpose of this review is to outline a succinct and empirically informed account of family caregiving within the context of palliative care and to propose an agenda for the future. The appraisal is underpinned by several systematic reviews, and other seminal publications from the last decade. [ABSTRACT FROM AUTHOR]

Objective: The aim of this paper is to present and critically appraise the evidence for the use of mindfulness-based interventions in cancer care. Methods: Systematic review methods were used. A thorough search of relevant major and specialised electronic databases was made and unpublished and ongoing work was also identified. Both qualitative and quantitative studies were eligible for inclusion. Information about aims, design, participant sample, measures, findings and intervention details were extracted from each study. Results: Thirteen research papers and four conference abstracts published since 2007 were identified which met the criteria, reporting five different types of mindfulness intervention. The 13 papers composed of three randomised control trials, two non-randomised control trials, five pre and post-test designs and two qualitative studies. Studies report significant improvements in anxiety, depression, stress, sexual difficulties, physiological arousal and immune function or subjective benefits across all interventions. Methodological limitations were identified. Diversity in study designs and interventions makes comparisons between studies difficult. Some mindfulness interventions may have a place in acute treatment and palliative care. Conclusion: Mindfulness approaches are a promising intervention in cancer care, potentially across the cancer trajectory. Further qualitative research and research into different styles of mindfulness delivery are recommended. Copyright © 2010 John Wiley & Sons, Ltd. [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]

This article draws on a four-year evaluation that assessed the delivery of support services by 15 British hospices and social agencies to family carers of terminally ill people. It aims to examine the politics of evaluation research. Three main arguments are posited: first, that evaluation research is distinguishable from ‘quick and dirty’ evaluations, which are insufficiently resourced and not implemented properly; second, what constitutes a contribution to knowledge and particularly what constitutes ‘new’ knowledge is inherently political; third, drawing on dramaturgy theory, the article presents findings from the study that illustrate how service providers draw selectively in various ways on knowledge, to present their work favourably to their audiences. Finally, the article concludes that such knowledge manipulation raises questions about whose voices are heard within organizations, and the politics involved in the writing of grant applications, in the processes of tendering for the funding of local services. [ABSTRACT FROM PUBLISHER]

The changes within children's palliative care services in the UK over the last decade highlight the importance of respite provision. This article reports on an evaluation of a children's hospice in northern England that was undertaken to elicit the views of 24 service users on their experiences of respite care in the hospice: parents, children and young people, siblings, guardians and family carers. Data were collected using in-depth interviews, transcribed and submitted to framework analysis. The findings demonstrate the tensions that parents in need of respite care feel as a result of the power unconsciously exercised by staff. Redistribution of resources and reordering of priorities are recommended to prevent the inadvertent impact upon families. [ABSTRACT FROM AUTHOR]

Background: despite a mortality rate of approximately 30% in acute stroke, little is known about the palliative care needs of this group of patients. Design: prospective study of 191 acute stroke patients admitted to hospital in England. Biographical, medical and strokerelated data were collected. Participants completed the Sheffield Profile for Assessment and Referral to Care (SPARC), a screening tool for referral to specialist palliative care. Findings: over 50% reported moderate to significant fatigue-related problems. Approximately 50% reported symptom-related problems (e.g. pain) or psychological distress (e.g. anxiety). Approximately 25% had concerns about death or dying, and 66% had concerns about dependence and disability. Over 50% were worried about the impact of stroke on family members. There were significant main effects of dependence (Barthel Index) (F1,123 = 12.640 P = 0.001) and age (F4,123 = 3.022 P = 0.020), and a significant three-factor interaction between dependence, age and co-morbidities (F9,123 = 2.199 P = 0.026) in predicting total SPARC scores. Conclusions: acute stroke patients have a high prevalence of palliative care needs. Acute stroke services should use the SPARC for needs assessment. Priority for assessment should be given to patients with a score of <15/20 on the Barthel Index, a tool already used in most stroke services. [ABSTRACT FROM AUTHOR]

Grounded Theory Methodology (GTM) is a widely cited research approach based upon symbolic interaction with a focus on interaction, action and processes. Relatively recently, Discursive Psychology; a language-based interaction research approach also based on symbolic interaction, emerged. At present Discursive Psychology is principally cited in the social sciences literature. Given Discursive Psychology's symbolic interaction foundations, what relevance does this approach have for evolving GTM? A number of methodological challenges were posed by a study looking at humour in Clinical Nurse Specialist–patient interactions. This paper will use the phenomenon of spontaneous humour in healthcare interactions to illustrate the potential for a new form of GTM drawing on discursive approaches; Discursive GTM. First, the challenges presented by a study looking at spontaneous humour in Clinical Nurse Specialist–patient interactions are presented. Second, the research approach adopted to meet these challenges – Discursive GTM (DGTM) – is explicated and the results of the study are outlined. Third, the different GTM approaches and Discursive Psychology are compared and contrasted in relation to the DGTM approach adopted. Finally, the challenges and tensions of using DGTM as well as the opportunities afforded by the use of naturally occurring data are reviewed. The authors contend that a DGTM approach may be appropriate in analyzing certain phenomena. In particular, we highlight the potential contribution of naturally occurring data as an adjunct to researcher-elicited data. Thus, when exploring particular phenomena, a DGTM approach may address the potentially under-developed symbolic interaction tenet of language. [Copyright &y& Elsevier]

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]

An introduction is presented in which the editor discusses various articles within the issue on topics including psychosocial palliative care standards; integration of palliative care, physiotherapy and respiratory medicine; and realist-based synthesis of integrated care in dementia.

Hospice trustees are volunteers who are vital to the governance and management of independent, charitable hospices, yet little is known about their roles and concerns. This paper presents some findings from a qualitative study which explored the views and perspectives of hospice trustees in the UK. Twenty hospice trustees took part in semi-structured telephone interviews, which were analysed using an iterative thematic approach. Nine themes emerged from the analysis, and were grouped into two major categories. One theme, 'becoming a trustee', is presented in this paper to illustrate trustees' concerns about the challenges they face in adapting to change. The pace of change currently facing hospices in the UK is an issue of particular concern to trustees, presenting ongoing challenges for this group of volunteers. The study also raises wider questions about how hospices wish to position themselves in the future. [ABSTRACT FROM AUTHOR]

This paper examines the question of why patients decline treatment for cancer. Though small in number, patients with cancer who refuse treatment pose a problem for physicians and other health professionals managing their care. From the medical perspective such a decision appears irrational, and research has been conducted to try to identify features of patients and their situation that predispose this outcome. Research has also examined communication strategies used by doctors to influence patient decision making. The identification of these features supports an individualist perspective on this issue, even in the literature that seeks to comprehend the patient's point of view. Making use of a narrative perspective involving illustrative cases drawn from published research, this paper proposes that such decisions need to be understood in terms of patients' relationship to medicine, something that is changing with respect to medicine's weakened authority and the growth of a consumerist ethos. Second, the emergence in society of competing ideologies provides the possibility for alternative value sets in which the meaning of life can be assessed. This means that what seems an individual act of defiance is actually one of the highest social degree. To see treatment refusal in this way has implications for the mismatch between professional and patient preferences. [ABSTRACT FROM AUTHOR]

Objectives. As people face cancer and the end of life, the social, cultural and therapeutic role of food takes on an increasing significance. As part of a larger study involving older Chinese people resident in the UK, we investigated their beliefs about the influence of food on cancer and its role in supportive cancer care. Design. A two-phase qualitative research study involved older Chinese people identified via Chinese community groups. In phase one, 46 older Chinese people participated in seven focus group discussions. In phase two, semi-structured interviews were conducted in Cantonese or Mandarin with 46 different older Chinese people to elicit their understandings of the role of food in health and illness generally and specifically for those with cancer. Results. The analyses revealed four main themes: (1) food as 'therapeutic'; (2) food as 'risky'; (3) food as supportive and comforting; and (4) beliefs about the lack of culturally appropriate and acceptable food in hospitals. Expectations about the lack of Chinese food and the poor quality and perceived unsuitability of 'western' food were regarded as major concerns in relation to hospital admission. Discussion. Understanding the perceived cultural and therapeutic significance of food and its functions in social exchange is one important aspect of promoting supportive and end-of-life cancer care for minority communities. These views helped explain the diversity and salience of food use in illness for older Chinese people resident in the UK. [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]