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Purpose Previous conceptualizations of cancer survivorship have focused on heterogeneous cancer survivors, with little consideration of the validity of conclusions for homogeneous tumour groups. This paper aims to examine the concept of cancer survivorship in the context of colorectal cancer (CRC). Method Rodgers’ (1989) Evolutionary Method of Concept Analysis guided this study. A systematic search of PUBMED, CINAHL, PsycINFO and The Cochrane Library was conducted in November 2016 to identify studies of CRC survivorship. The Braun and Clarke (2006) framework guided the analysis and interpretation of data extracted from eighty-five publications. Results Similar to general populations of cancer survivors, CRC survivors experience survivorship as an individual, life-changing process, punctuated by uncertainty and a duality of positive and negative outcomes affecting quality of life. However, CRC survivors experience specific concerns arising from the management of their disease. The concept of cancer survivorship has evolved over the past decade as the importance of navigating the healthcare system and its resources, and the constellation of met and unmet needs of cancer survivors are realised. Conclusions The results highlight core similarities between survivorship in the context of CRC and other tumour groups, but underlines issues specific to CRC survivorship. Communication and support are key issues in survivorship care which may detrimentally affect CRC survivors' well-being if they are inadequately addressed. Healthcare professionals (HCP’s) therefore have a duty to ensure cancer survivors’ health, information and supportive care needs are met in the aftermath of treatment. [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]

Summary: Background: Caring for dying patients and their families presents many challenges, and may be negatively affected by nurses’ Fear of Death. This study investigates attitudes of emergency and palliative care nurses towards death and dying. Methods: A mixed methods design including questionnaire and interview, was utilised. This paper reports questionnaire results from the Death Attitude Profile-Revised Scale and coping skills. Results: Twenty-eight emergency nurses and 28 palliative care nurses from two health services participated. Nurses held low to moderate Fear of Death (44%), Death Avoidance (34%), Escape Acceptance (47%) and Approach Acceptance (59%). Emergency nurses reported higher death avoidance and, significantly lower coping skills than palliative care nurses. Both reported high acceptance of the reality of death (Neutral Acceptance 82%), and indicated they coped better with a patient who was dying than with, the patient's family. Conclusions: Nurses generally held positive attitudes towards death and dying. Participants could cope with caring for dying patients, but were significantly less comfortable coping with patients’ family members. Nurses should be aware of the impact their attitude towards death may have on providing supportive nursing care for the dying. [ABSTRACT FROM AUTHOR]

Abstract: Purpose of the research: Breast cancer survival rates are improving with over 60% likely to live 20 years. As 30% diagnoses occur in women over 70 the prevalence of breast cancer survivors living into older age is increasing. The specific needs and experiences of this group have rarely been addressed. This study aimed to explore older women's experience of living with breast cancer alongside other health conditions, and to identify their information and support needs and preferences. Methods and sample: Data were collected from 28 semi-structured qualitative interviews and 2 focus groups (n = 14), with breast cancer survivors aged 70–90, and were analysed using thematic analysis. Key results: These older breast cancer survivors experienced a range of long-term physical problems resulting from treatment, including poor cosmetic results and poor shoulder movements, and bras and prostheses were often unsuitable. Many were keen to preserve their body image ideal irrespective of age. Reconstruction was rarely discussed, but all would have liked this option. Older women wanted to be treated as individuals rather than uniformly as older people, with their personal physical and social needs (including co-morbidities) taken into account. They expressed a preference for information direct from health professionals. Conclusions: Many breast cancer survivors will live into advanced old age with permanent physical and emotional consequences of their treatment. Holistic and personalized assessment of needs becomes increasingly important with age, particularly with comorbidity. Effective rehabilitative care is important to reduce the impact of breast cancer into old age. [Copyright &y& Elsevier]

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]

Abstract: Purpose of the research: There is increasing recognition of the importance of good communication between healthcare professionals and patients facing cancer or end of life. In England, a new national 3-day training programme called ‘Connected’ has been developed and is now mandatory for all cancer and palliative care professionals. This study aimed to explore the attitudes of staff in one region to undertaking this training. Methods and sample: A survey questionnaire was developed through a series of discussions with experts and semi-structured interviews with five healthcare professionals. The questionnaire was distributed to 200 cancer and palliative care staff; 109 were completed and returned. Key results: There were significant differences between doctors’ and nurses’ attitudes to communication skills training, with doctors demonstrating more negative attitudes. More nurses than doctors felt that communication skills training should be mandatory for cancer and palliative care professionals (p ≤ 0.001), whilst more doctors felt that these staff should already be skilled communicators and not require further training (p ≤ 0.001). Nurses also self-rated their communication skills more highly than doctors. Conclusions: The current ‘one size fits all’ approach being taken nationally to advanced communication skills training does not meet the training preferences of all healthcare professionals, and it is recommended that tailoring courses to individuals’ needs should be considered. [Copyright &y& Elsevier]

Background: The concept of ‘positive thinking’ emerged in cancer care in the 1990s. The usefulness of this approach in cancer care is under increasing scrutiny with existing research, definitions and approaches debated. Nurses may wish to judiciously examine the debate in context and consider its relevance in relation to their experience and clinical practice. Purpose: To offer a constructivist perspective on ‘being positive’ we extract data from a constructivist grounded theory study on humour in healthcare interactions in order to identify implications for practice and future research. Methods: We offer three areas for consideration. First, we briefly review the emergence of ‘positive thinking’ within cancer care. Second, we present data from a grounded theory study on humour in healthcare interactions to highlight the prevalence of this discourse in cancer care and its contested domains. We conclude with implications for practice and future research. Findings: Patients actively seek meaningful and therapeutic interactions with healthcare staff and ‘being positive’ may be part of that process. Being positive has multiple meanings at different time-points for different people at different stages of their cancer journey. Patients may become ensnared by positivity through its uncritical acceptance and enactment. Conclusion: Positive thinking does not exist in isolation but as part of a complex, dynamic, multi-faceted patient persona enacted to varying degrees in situated healthcare interactions. Nurses need to be aware of the potential multiplicity of meanings in interactions and be able (and willing) to respond appropriately. [Copyright &y& Elsevier]

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]

Summary: Chronic obstructive pulmonary disease (COPD) is a highly prevalent condition worldwide and is associated with significant mortality. This paper gives an overview of the relevant literature regarding care needs in advanced COPD from the perspective of the patient or carer, and aims to explore the appropriateness of a palliative care approach in this group. Publications revealed that patients with COPD have a high symptom burden that impacts on quality of life and social functioning. Information provision in COPD is often lacking and the implications of diagnosis and prognosis are not routinely discussed. The impact on families and carers is considerable, many patients have significant care requirements which can affect family relationships. Although patients with COPD have regular contact with health services, access to specialist services and palliative care is poor. This paper highlights the need for increased provision for palliative care in COPD, alongside dedicated education and training for health professionals, and continued research to identify the most appropriate ways of delivering this care. [Copyright &y& Elsevier]

Abstract: This paper considers some issues in the provision of adult bereavement support in UK hospices. The paper is based on the findings of a multi-method study conducted in two phases over 30 months (2003–2005) to examine the nature and quality of adult bereavement support in UK hospices from the perspectives of bereaved people and professional and volunteer bereavement workers [Field, Reid, Payne, & Relf (2005). Adult Bereavement Support in Five Hospices in England. Sheffield, UK: Palliative and End-of-Life Care Research Group, University of Sheffield. (Available from Professor Payne)]. It discusses the importance of continuity between pre-bereavement and bereavement support, the integration of bereavement services within hospices and the involvement of volunteers in bereavement support. It then discusses the engagement of UK hospices in the broader development of bereavement support. Although hospices have developed expertise in supporting bereaved people, our research suggests that they have not had a major impact on other health service providers, such as general practitioners and distinct nurses and staff in acute hospital trusts, in this area. [Copyright &y& Elsevier]

Examines the personal attitudes, knowledge and behavior of registered nurses in Great Britain regarding cadaveric donotransplantation. Practice found to be favored by majority of nurses surveyed; Distressing nature of procedure cited by nurses; Favorable reactions of nurses working in renal units to donotransplantation.

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.

Analyzes the organizational issues in palliative care, focusing on data collected from 18 hospices in the North Island of New Zealand. Information on the increase of palliative care services; Details on the organization of health care workers; Four types of hospices examined; Results of the analysis.

Compares psychological morbidity, perceptions of comfort or distress and descriptions of a good death in hospice cancer patients who reported witnessing a fellow patient's death with patients who did not have this experience. Depression of patients witnessing a death; Awareness of dying; Definition of a good death.

Examines the experiences of donor relatives. Emotional reactions to the death and donation; Perceptions of decision-making process; Assessment of the problems that donation has caused the donor relatives; Model of donor relatives' experiences; Totality of relative's organ donation experience; Concerns about donation.

Context: Supplementary support services in palliative care for older people are increasingly common, but with neither recommended tools to measure outcomes nor reviews synthesizing anticipated outcomes. Common clinically focused tools may be less appropriate.Objectives: To identify stakeholder perceptions of key outcomes from supplementary palliative care support services, then map these onto outcome measurement tools to assess relevance and item redundancy.Methods: A scoping review using the design by Arksey and O'Malley. EMBASE, CINAHL, MEDLINE, and PSYCHinfo searched using terms relating to palliative care, qualitative research, and supplementary support interventions. Articles were imported into Endnote™, and Covidence™ was used by two reviewers to assess against inclusion criteria. Included articles were imported into NVivo™ and thematically coded to identify key concepts underpinning outcomes. Each item within contender outcome measurement tools was assessed against each concept.Results: Sixty included articles focused on advance care planning, guided conversations, and volunteer befriending services. Four concepts were identified: enriching relationships; greater autonomy and perceived control; knowing more; and improved mental health. Mapping concepts to contender tool items revealed issues of relevance and redundancy. Some tools had no redundant items but mapped only to two of four outcome themes; others mapped to all concepts, but with many redundant questions. Tools such as ICECAP-Supportive Care Measure and McGill Quality of Life had high relevance and low redundancy.Conclusion: Pertinent outcome concepts for these services and population are not well represented in commonly used outcome measurement tools, and this may have implications in appropriately measuring outcomes. This review and mapping method may have utility in fields where selecting appropriate outcome tools can be challenging. [ABSTRACT FROM AUTHOR]

Follow-up care and surveillance are essential components of colorectal cancer survivorship. However, the relative contribution of healthcare experiences to quality of life in cancer survivorship is poorly understood. This study explores associations between colorectal cancer survivors' healthcare experiences and quality of life. Cross-sectional survey study. Participants were recruited from medical oncology and colorectal cancer surgery departments in three hospitals, and twenty-one cancer support centres providing psycho-social care to cancer patients and survivors in Ireland. 304 colorectal cancer survivors between 6 and 60 months post-diagnosis. Participants completed a cross-sectional questionnaire, including the Functional Assessment of Therapy–Colorectal Cancer Survey and the Patient Continuity of Care Questionnaire. Multivariate logistic regression analysis was undertaken to identify associations between quality of life outcomes and healthcare-related variables including continuity of care, access to care, information needs and perceptions of support from health and advocacy services. Most participants (80%) had access to a named healthcare professional and were more frequently satisfied with support received in hospital (95%) compared to primary care (76%) or community (61%) settings. More than two-thirds of participants reported unmet information needs (68%) or social difficulties (66%). 40% reported some dissatisfaction with continuity of care. Greater social difficulty was consistently associated with poorer quality of life in all domains (OR range: 2.9–9.7). Lower satisfaction with continuity of care predicted poorer physical (OR =2.6), social (OR =2.1), functional (OR =2.9) and overall quality of life (OR =2.0). Unmet information needs (OR =2.9) and absence of access to a named nurse (OR =3.8) were associated with lower levels of emotional well-being. Survivors who were living with active malignant disease (OR =3.8), had undergone reversal of a temporary ostomy (OR =4.0) or had accessed advocacy-led cancer support were more likely to experience lower quality of life overall (OR= 2.6). Colorectal cancer survivors relied on oncology professionals for cancer-related support and experienced quality of life issues and unmet needs, which were not addressed by oncology, primary care or advocacy professionals. This study suggests there is scope to optimise the contribution of primary care, community care and advocacy services to cancer survivorship care; these services were often overlooked or provided insufficient support when accessed by survivors. The recurring associations between quality of life outcomes and continuity of care and social difficulties suggest these may be meaningful variables to target in the development of interventions to improve survivors' quality of life in the context of healthcare. [ABSTRACT FROM AUTHOR]

Palliative care (PC) integration is vital, as endorsed by the World Health Organization. Yet, Jordan, a Middle Eastern country with limited resources, faces ongoing challenges despite efforts to improve palliative and home care. Establishing a national PC strategic framework, with government and stakeholder consensus, is essential for ensuring universal access to high-quality palliative care. However, processes for achieving this, particularly in the Middle East, are underreported. This study delineates the process of developing Jordan's National Palliative and Home Care Strategic Framework, reflecting on its five-year impact. Additionally, it identifies barriers to PC progress in Jordan and offers recommendations to stakeholders. We conducted a rapid review and analyzed reports, minutes, meetings, and publications. The sequential framework development involved content and situational analysis, expert review, transparent expert consultation, multistage consensus procedures, and high-level advocacy meetings. The National Palliative and Home Care Strategic Framework encompasses six domains: 1) policy, 2) finance, 3) service delivery, 4) opioid access, 5) capacity building, and 6) information, research, monitoring, and evaluation. Government endorsement in April 2018 ignited national engagement, driving policy, service delivery, workforce development, education, training, and research progress. Nonetheless, workforce shortages, limited opioid access, and inadequate funding persist as barriers. Jordan's collaborative development of the inaugural National Palliative and Home Care Strategic Framework, endorsed by the government and stakeholders, provides a comprehensive roadmap for PC advancement. While it promises improved services, effective solutions to workforce and opioid access issues are crucial for successful implementation. [ABSTRACT FROM AUTHOR]

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]

Context: Trends in symptoms and functional ability are known toward the end of life, but less is understood about quality of life, particularly prospectively following service referral.Objectives: This study compares quality of life trajectories of people with and without cancer, referred to volunteer-provided palliative care services.Methods: A secondary analysis of the ELSA trial (n = 85 people with cancer and n = 72 without cancer) was performed. Quality of life data (WHOQOL-BREF) were collected at baseline (referral), four weeks, eight weeks, and 12 weeks. Sociodemographic data were collected at baseline. We specified a series of joint models to estimate differences on quality of life trajectories between groups adjusting for participants who die earlier in the study.Results: People with cancer had a significantly better quality of life at referral to the volunteer-provided palliative care services than those with nonmalignant disease despite similar demographic characteristics (Cohen d's = 0.37 to 0.45). More people with cancer died during the period of the study. We observed significant differences in quality of life physical and environmental domain trajectories between groups (b = -2.35, CI -4.49, -0.21, and b = -4.11, CI -6.45, -1.76). People with cancer experienced a greater decline in quality of life than those with nonmalignant disease.Conclusion: Referral triggers for those with and without cancer may be different. People with cancer can be expected to have a more rapid decline in quality of life from the point of service referral. This may indicate greater support needs, including from volunteer-provided palliative care services. [ABSTRACT FROM AUTHOR]

Prison populations across the world are increasing. In the United Kingdom, numbers have doubled in the last two decades, and older prisoners now constitute the fastest growing section of the prison population. One key reason for this shifting prisoner demographic is the growing numbers of men convicted of ‘historic’ sexual offences, many of whom are imprisoned for the first time in old age, and housed in prisons not suited to their needs. These demographic changes have profound consequences, including increased demand for health and social care in prison, and rising numbers of anticipated deaths in custody. Using the findings from a recently completed study of palliative care in prison, this paper proposes that older prisoners face a ‘double burden’ when incarcerated. This double burden means that as well as being deprived of their liberty, older people experience additional suffering by not having their health and wellbeing needs met. For some, this double burden includes a ‘de facto life sentence’, whereby because of their advanced age and the likelihood that they will die in prison, they effectively receive a life sentence for a crime that would not normally carry a life sentence. There has been little popular or academic debate concerning the ethical and justice questions that this double burden raises. Drawing on the work of Wacquant and others, the paper proposes that these changes are best understood as unplanned but reasonably foreseeable consequences of neoliberal penal policies. Although the paper focuses on the UK (which by comparison with other European countries has high rates of imprisonment), many of the challenges discussed are emerging in other countries across the world. This paper illustrates starkly how neoliberal policies and discourses have shaped the expansion and composition of the prison population with its consequent implications for health and justice. [ABSTRACT FROM AUTHOR]

Abstract: Context: Sedation at the end of life, regardless of the nomenclature, is an increasingly debated practice at both clinical and bioethical levels. However, little is known about the characteristics and trends in scientific publications in this field of study. Objectives: This article presents a bibliometric analysis of the scientific publications on continuous sedation until death. Methods: Four electronic databases (MEDLINE, PubMed, Embase, and PsycINFO®) were searched for the indexed material published between 1945 and 2011. This search resulted in bibliographic data of 273 published outputs that were analyzed using bibliometric techniques. Results: Data revealed a trend of increased scientific publication from the early 1990s. Published outputs, diverse in type (comments/letters, articles, reviews, case reports, editorials), were widely distributed across 94 journals of varying scientific disciplines (medicine, nursing, palliative care, law, ethics). Most journals (72.3%) were classified under Medical and Health Sciences, with the Journal of Pain and Symptom Management identified as the major journal in the field covering 12.1% of the total publications. Empirical research articles, mostly of a quantitative design, originated from 17 countries. Although Japan and The Netherlands were found to be the leaders in research article productivity, it was the U.K. and the U.S. that ranked top in terms of the quantity of published outputs. Conclusion: This is the first bibliometric analysis on continuous sedation until death that can be used to inform future studies. Further research is needed to refine controversies on terminology and ethical acceptability of the practice, as well as conditions and modalities of its use. [Copyright &y& Elsevier]

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]

Context: Reliable access to opioid medication is critical to delivering effective pain management, adequate treatment of opioid dependence, and quality palliative care. However, more than 80% of the world population is estimated to be inadequately treated for pain because of difficulties in accessing opioids. Although barriers to opioid access are primarily associated with restrictive laws, regulations, and licensing requirements, a key problem that significantly limits opioid access relates to policy constraints.Objectives: To identify and explore policy barriers to opioid access in 12 Eastern and Central European countries involved in the Access to Opioid Medication in Europe project, funded by the European Community's Seventh Framework (FP7/2007-2013, no. 222994) Programme.Methods: A systematic content analysis of texts retrieved from documents (e.g., protocols of national problem analyses, strategic planning worksheets, and executive summaries) compiled, reviewed, approved, and submitted by either the Access to Opioid Medication in Europe consortium or the national country teams (comprising experts in pain management, harm reduction, and palliative care) between September 2011 and April 2014 was performed.Results: Twenty-five policy barriers were identified (e.g., economic crisis, bureaucratic issues, lack of training initiatives, stigma, and discrimination), classified under four predetermined categories (financial/economic aspects and governmental support, formularies, education and training, and societal attitudes). Key barriers related to issues of funding allocation, affordability, knowledge, and fears associated with opioids.Conclusion: Reducing barriers and improving access to opioids require policy reform at the governmental level with a set of action plans being formulated and concurrently implemented and aimed at different levels of social, education, and economic policy change. [ABSTRACT FROM AUTHOR]

Abstract: Context: In 2011, the World Health Organization (WHO) published the policy guidelines Ensuring Balance in National Controlled Substances Policies—Guidance for Availability and Accessibility of Controlled Medicines, presenting a revised version of the previous guidelines from 2000. Objectives: To describe the consensus process that guided the revision of the guidelines. Methods: A four-stage revision process was undertaken with a panel of 29 international experts from palliative care, public health, and harm reduction: 1) a qualitative inventory of required changes by means of a structured checklist, 2) & 3) a two-round online consensus Delphi process about the draft revision of the guidelines, and 4) a WHO advisory meeting for the discussion of remaining controversies and final issues. Results: The qualitative inventory resulted in a draft revision of the guidelines meeting requirements on different levels, such as a broader focus and more accurate evidence. Operationalization of the guidelines was improved by specifying measures, procedures, and responsibilities. The Delphi procedure provided concrete indications for the rewording of both the guidelines and the associated text. During the advisory meeting, any persistent disagreements were systematically discussed to achieve consensus on the new version of the guidelines. Conclusion: The four-stage multimethod consensus process resulted in a substantial revision to the WHO guidelines. This takes into account the increase in knowledge about opioid medication since the first edition of the guidelines. Disagreement emerging from the process underlines the complexity of preparing guidance because of the delicate balance between need and control. [Copyright &y& Elsevier]

Abstract: Context: Family carers need to be supported in their central role of caring for patients at the end of life, but brief practical tools to assess their support needs have been missing. To address this gap, we developed a brief evidence-based Carer Support Needs Assessment Tool (CSNAT) suitable for everyday practice. Objectives: To assess face, content, and criterion validity of the CSNAT and measure sensitivity to change over time. Methods: Participants were 225 adult carers of patients from six U.K. Hospice Home Care services. Carers were surveyed at baseline and at four-week follow-up using self-completed questionnaires, including CSNAT, standard measures (distress, strain, positive appraisals, preparedness, and global health), help provided with activities of daily living, and patients' symptom levels. Qualitative feedback on CSNAT was sought through 10 pilot carer interviews and professional and carer advisory group input. Results: The CSNAT has good face, content, and criterion validity. CSNAT domains comprehensively covered carer support needs. CSNAT scores showed clear and consistent positive correlations with strain and distress and negative correlations with preparedness for caregiving and global health. There also were clear correlations with help with activities of daily living and some relationships with positive appraisals and symptom burden. The CSNAT's sensitivity to change in relevant domains was similar to other measures. Conclusion: The CSNAT is a valid tool for the direct measurement of carers' support needs. It combines comprehensiveness of content with feasibility of administration and has utility both as a research tool and a tool for everyday palliative care practice. [Copyright &y& Elsevier]

Abstract: Background: An emphasis on patient choice in health and social care underpins a growing interest in advance care planning. Few studies have explored the views and experiences of people with advanced lung cancer about discussing their wishes or preferences for end of life care. Evidence suggests that some people may want nurses and other health professionals to initiate discussions about the future. However, there is a lack of evidence about what priority patients facing death give to their preferences and wishes, and how these shape their views about end of life. Objectives: To explore the views and experiences of people affected by lung cancer about discussing preferences and wishes for end of life care and treatment. Design: A qualitative study using semi-structured interviews and constant comparative method of analysis to develop a grounded theory. Settings: One multi-cultural city and one post-industrial town in northern England, UK. Data were collected between 2006 and 2008. Participants: Interviews took place with 25 patients with lung cancer and 19 family members. Method: Qualitative constructivist grounded theory study. Results: The study found that preferences and wishes for future care and treatment were not the main concern of people with cancer; rather, any concerns for the future were about the social aspects of death. A theory ‘maintaining integrity in the face of death’ is proposed. This theory purports that patients with advanced lung cancer and their families focus on acting and talking as ‘normal’ to help them balance living in the present whilst facing death. Participants talked about their experiences of facing death whilst striving to live in the present. Planning for one''s own dying and eventual death was not something that people with lung cancer reported having discussed, except when, out of concern for their families, practical arrangements needed to be made following death. Conclusion: The study suggests that people facing the end of their life primarily focus on living in the present. The findings suggest that nurses need to develop ways of helping people prepare for the ‘social’ rather than just the physical or ‘medicalised’ aspects of death. [Copyright &y& Elsevier]

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]

Stroke tends to result in a range of disabilities which have been shown to benefit from rehabilitation, in particular physiotherapy. Patients tend to have high expectations of the extent of recovery they can achieve through physiotherapy, and subsequently view discharge from physiotherapy before they have achieved that degree of recovery as disappointing and distressing. Current literature suggest that explicit discussion between physiotherapists and patients of the anticipated extent of recovery tends to be avoided during the programme of physiotherapy treatment, making discharge from physiotherapy the point at which potentially differing expectations might be expected to be confronted. This paper explores how the process of discharge is managed and experienced by patients and physiotherapists. It draws on Craib''s (1994) ideas about how disappointment is managed in modern society. A qualitative longitudinal study was conducted with 16 stroke patients and their physiotherapists. These data comprise interview and observational material. The study found that the discharge of stroke patients from physiotherapy is not a point when patients’ expectations and optimism about recovery are confronted. The notion of natural recovery that was raised with patients by physiotherapists at discharge and the information physiotherapists gave about exercise post-discharge had the effect of maintaining patients’ high expectations and hopes about recovery. This has implications for the process of adaptation and adjustment that the patient eventually goes through in order to accommodate their altered abilities and identity. We argue that a number of factors contribute to the denial of disappointment within this interaction and that services need to be developed in ways that enable physiotherapists to engage with the possibility of disappointment about stroke outcome with patients, thereby making a positive contribution to the process of adaptation and adjustment that stroke survivors experience following discharge. [Copyright &y& Elsevier]

The growth in the provision of counselling services in British primary care offers an opportunity for general practitioners (GPs) to refer patients to counsellors following bereavement. This study explores the factors that influence GPs referral decisions. Qualitative interviews were conducted with 50 GPs from two cities in southern UK. The study found that GPs draw on notions of abnormal bereavement in making referral decisions. Indicators of bereavement problems related to: the nature of the death; level of social support; and reaction to the death. GPs views about the types of patients likely to benefit from counselling were further criteria employed in referral decisions. The study indicated that consideration of these factors may discriminate against certain types of patients being referred. Further education in the range of psychological theories of bereavement may assist GPs in understanding their bereaved patients’ experiences and in developing their skills in recognising abnormal reactions and making appropriate referrals. [Copyright &y& Elsevier]

Context: Near the end of life when patients experience refractory symptoms, palliative sedation may be considered as a last treatment. Clinical guidelines have been developed, but they are mainly based on expert opinion or retrospective chart reviews. Therefore, evidence for the clinical aspects of palliative sedation is needed.Objectives: To explore clinical aspects of palliative sedation in recent prospective studies.Methods: Systematic review was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and registered at PROSPERO. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014-December 2019), combining sedation, palliative care, and prospective. Article quality was assessed.Results: Ten prospective articles were included, involving predominantly patients with cancer. Most frequently reported refractory symptoms were delirium (41%-83%), pain (25%-65%), and dyspnea (16%-59%). In some articles, psychological and existential distress were mentioned (16%-59%). Only a few articles specified the tools used to assess symptoms. Level of sedation assessment tools were the Richmond Agitation Sedation Scale, Ramsay Sedation Scale, Glasgow Coma Scale, and Bispectral Index monitoring. The palliative sedation practice shows an underlying need for proportionality in relation to symptom intensity. Midazolam was the main sedative used. Other reported medications were phenobarbital, promethazine, and anesthetic medication-propofol. The only study that reported level of patient's discomfort as a palliative sedation outcome showed a decrease in patient discomfort.Conclusion: Assessment of refractory symptoms should include physical evaluation with standardized tools applied and interviews for psychological and existential evaluation by expert clinicians working in teams. Future research needs to evaluate the effectiveness of palliative sedation for refractory symptom relief. [ABSTRACT FROM AUTHOR]

Context: Palliative medicine (PM) has gained subspecialty recognition in many countries during the past two decades. Jordan is one of the first Arab countries to gain accreditation for the specialty.Objectives: To outline the process undertaken by leaders in palliative care in Jordan to have PM recognized as a subspecialty and the development of a two-year fellowship training program. To contextualize the Jordanian experience with the experience from other countries and assess the need for PM specialty programs in Jordan.Methods: A thorough review of all documentations, letters, correspondence, and proposals exchanged between the palliative care department at King Hussein Cancer Center and the Jordanian Medical Council from 2011 to 2017. An assessment of the number of certified physicians and fellowship posts required to meet the current palliative care needs in Jordan, using population-based need for palliative care.Results: The process of gaining subspecialty status for PM in Jordan was complex, lengthy, and dependent on the collaboration of many officials and health sector organizations working together on a national strategy to achieve it. Ultimately, PM was recognized as a subspecialty in 2017, a two-year fellowship program was accredited by the Jordanian Medical Council in 2018, with a recognized subspecialty board examination, which can be accessed by many medical and surgical specialties. It is estimated that 185-235 full-time equivalent palliative care specialist physicians are needed to meet the demand of patients in Jordan.Conclusion: Key factors enabling accreditation to happen in Jordan were strong leadership, persistence, collaboration with major stakeholders, and seeking out opportunities to promote the specialty. Our experience and lessons learnt are transferable to other countries and may prove beneficial to others aiming to gain subspecialty recognition for PM. [ABSTRACT FROM AUTHOR]

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]

The global COVID-19 pandemic is likely to have a major impact on the experience of death, dying, and bereavement. This study aimed to review and synthesize learning from previous literature focused on the impact on grief and bereavement during other infectious disease outbreaks. We conducted a rapid scoping review according to the principles of the Joanna Briggs Institute and analyzed qualitative data using thematic synthesis. From the 218 identified articles, 6 were included in the analysis. They were four qualitative studies, one observational study, and a systematic review. Studies were conducted in West Africa, Haiti, and Singapore. No research studies have focused on outcomes and support for bereaved people during a pandemic. Studies have tended to focus on survivors who are those who had the illness and recovered, recognizing that some of these individuals will also be bereaved people. Previous pandemics appear to cause multiple losses both directly related to death itself and also in terms of disruption to social norms, rituals, and mourning practices. This affects the ability for an individual to connect with the deceased both before and after the death, potentially increasing the risk of complicated grief. In view of the limited research, specific learning from the current COVID-19 crisis and the impact on the bereaved would be pertinent. Current focus should include innovative ways to promote connection and adapt rituals while maintaining respect. Strong leadership and coordination between different bereavement organisations is essential to providing successful postbereavement support. [ABSTRACT FROM AUTHOR]

To examine how relatives evaluate the quality of communication with the treating physician of a dying resident in long-term care facilities (LTCFs) and to assess its differences between countries. A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. Relatives of residents who died during the previous 3 months were sent a questionnaire. 761 relatives of deceased residents in 241 LTCFs in Belgium, England, Finland, Italy, the Netherlands, and Poland. The Family Perception of Physician-Family Communication (FPPFC) scale (ratings from 0 to 3, where 3 means the highest quality) was used to retrospectively assess how the quality of end-of-life communication with treating physicians was perceived by relatives. We applied multilevel linear and logistic regression models to assess differences between countries and LTCF types. The FPPFC score was the lowest in Finland (1.4 ± 0.8) and the highest in Italy (2.2 ± 0.7). In LTCFs served by general practitioners, the FPPFC score differed between countries, but did not in LTCFs with on-site physicians. Most relatives reported that they were well informed about a resident's general condition (from 50.8% in Finland to 90.6% in Italy) and felt listened to (from 53.1% in Finland to 84.9% in Italy) and understood by the physician (from 56.7% in Finland to 85.8% in Italy). In most countries, relatives assessed the worst communication as being about the resident's wishes for medical treatment at the end of life, with the lowest rate of satisfied relatives in Finland (37.6%). The relatives' perception of the quality of end-of-life communication with physicians differs between countries. However, in all countries, physicians' communication needs to be improved, especially regarding resident's wishes for medical care at the end of life. Training in end-of-life communication to physicians providing care for LTCF residents is recommended. [ABSTRACT FROM AUTHOR]

Context: To provide high-quality palliative care to nursing home residents, staff need to understand the basic principles of palliative care.Objectives: To evaluate the extent of agreement with the basic principles of palliative care of nurses and care assistants working in nursing homes in five European countries and to identify correlates.Methods: This is a cross-sectional study in 214 homes in Belgium, England, Italy, the Netherlands, and Poland. Agreement with basic principles of palliative care was measured with the Rotterdam MOVE2PC. We calculated percentages and odds ratios of agreement and an overall score between 0 (no agreement) and 5 (total agreement).Results: Most staff in all countries agreed that palliative care involves more than pain treatment (58% Poland to 82% Belgium) and includes spiritual care (62% Italy to 76% Belgium) and care for family or relatives (56% Italy to 92% Belgium). Between 51% (the Netherlands) and 64% (Belgium) correctly disagreed that palliative care should start in the last week of life and 24% (Belgium) to 53% (Poland) agreed that palliative care and intensive life-prolonging treatment can be combined. The overall agreement score ranged between 1.82 (Italy) and 3.36 (England). Older staff (0.26; 95% confidence interval [CI]: 0.09-0.43, P = 0.003), nurses (0.59; 95% CI: 0.43-0.75, P < 0.001), and staff who had undertaken palliative care training scored higher (0.21; 95% CI: 0.08-0.34, P = 0.002).Conclusions: The level of agreement of nursing home staff with basic principles of palliative care was only moderate and differed between countries. Efforts to improve the understanding of basic palliative care are needed. [ABSTRACT FROM AUTHOR]

Objectives: There is a need to improve the assessment of emotional functioning (EF). In the international Advance Care Planning: an Innovative Palliative Care Intervention to Improve Quality of Life in Cancer Patients - a Multi-Centre Cluster Randomized Clinical Trial (ACTION) trial involving patients with advanced cancer, EF was assessed by a customized 10-item short form (EF10). The EF10 is based on the European Organisation for Research and Treatment of Cancer (EORTC) EF item bank and has the potential for greater precision than the common EORTC Quality of Life Questionnaire Core 30 four-item scale (EF4). We assessed the relative validity (RV) of EF10 compared with EF4.Methods: Patients from Belgium, Denmark, Italy, the Netherlands, Slovenia, and the United Kingdom completed EF10 and EF4, and provided data on generic quality of life, coping, self-efficacy, and personal characteristics. Based on clinical and sociodemographic variables and questionnaire responses, 53 "known groups" that were expected to differ were formed, for example, females versus males. The EF10 and EF4 were first independently compared within this known group, for example, the EF10 score of females vs the EF10 score of males. When these differences were significant, the RV was calculated for the comparison of the EF10 with the EF4.Results: A total of 1028 patients (57% lung, 43% colorectal cancer) participated. Forty-five of the 53 known-groups comparisons were significantly different and were used for calculating the RV. In 41 of 45 (91%) comparisons, the RV was more than 1, meaning that EF10 had a higher RV than EF4. The mean RV of EF10 compared with that of EF4 was 1.41, indicating superior statistical power of EF10 to detect differences in EF.Conclusions: Compared with EF4, EF10 shows superior power, allowing a 20% to 34% smaller sample size without reducing power, when used as a primary outcome measure. [ABSTRACT FROM AUTHOR]

Context: Thousands of family members worldwide are annually involved in assisted dying. Family participation in assisted dying has rarely been investigated and families' needs typically are not considered in assisted dying legislation and clinical guidelines.Objectives: To explore family caregivers' reflections on experiences of assisted suicide in Switzerland.Methods: A cross-sectional qualitative interview study conducted in the Italian- and French-speaking regions of Switzerland. Interpretation and analysis were performed using qualitative content analysis.Results: Twenty-eight close relatives and family carers of 18 patients who died by assisted suicide in Switzerland were interviewed. Family members perceived their involvement in assisted suicide as characterized by five phases; 1) contemplation, 2) gaining acceptance, 3) gaining permission, 4) organization, and 5) aftermath. Families can participate in these phases at diverse levels and with varying degrees of involvement. Important triggers for families and patients for transition between phases include patients' experiences of their life-threatening illnesses and related treatments, their increasing awareness of approaching death, and family member recognition of their loved one's unbearable suffering. Participating in assisted suicide created further demanding tasks for families in addition to their role of caregivers.Conclusion: Families appeared to be involved in the preparation of assisted suicide along with patients, irrespective of their personal values regarding assisted dying. Support for family members is essential if they are involved in tasks preparatory to assisted suicide. Clinical guidelines and policies concerning assisted dying should acknowledge and address family needs. [ABSTRACT FROM AUTHOR]

The 22 countries of WHO's Eastern Mediterranean Region are experiencing an increase in the burden of non-communicable diseases (NCDs), including cancer. Of the six WHO regions, the Eastern Mediterranean Region is projected to have the greatest increase in cancer incidence in the next 15 years. Furthermore, most cancers are diagnosed at a late stage, resulting in a lower cancer survival rate than in the European Region and the Region of the Americas. With increasing numbers of deaths from cancer, palliative care should be available to relieve suffering in patients with advanced disease and at the end of life. However, in the Eastern Mediterranean Region, the palliative care available is variable and inconsistent. Several barriers exist to the development and expansion of palliative care delivery in this region, including the absence of palliative care in national policies, little partnership working, insufficient palliative care education for health-care professionals and volunteers, poor public awareness, and gaps in access to essential pain-relief medicines. In this Review, we explore data and evidence from published literature, WHO meeting reports, cancer control mission reports, and the WHO global NCD country capacity survey to identify the status of palliative care in the Eastern Mediterranean Region, including the challenges and opportunities for development. [ABSTRACT FROM AUTHOR]

Public Health England (2013) survey data indicates that while the place of death is geographically uneven across England, given a choice, many older people nearing end of life would prefer to die at home. There is, however, a growing critique that policies designed to support home death fail to understand the needs and preferences of older people and the impact on family carers. Such policies also make assumption about within whose home the home death takes place. Hence, there are major gaps in our understanding of firstly, where and how care work undertaken by family members within domestic settings takes place; and secondly, how it can create tensions between home and care that fundamentally disrupt the physical and socio-emotional meaning of home for family carers, impacting on their sense of home post-death. This can have consequences for their own well-being. In this paper we draw on interview data from our 'Unpacking the Home' study to elicit an in-depth understanding of how facilitating a home death can create an ambiguity of place for family carers, where the issues faced by them in caring for a dying older person at home, and the home death itself, can fundamentally reshape the meaning and sense of home. [ABSTRACT FROM AUTHOR]

Context Overregulation of controlled medicines is one of the factors contributing to limited access to opioid medicines. Objectives The purpose of this study was to identify legal barriers to access to opioid medicines in 12 Eastern European countries participating in the Access to Opioid Medication in Europa project, using a quick scan method. Methods A quick scan method to identify legal barriers was developed focusing on eight different categories of barriers. Key experts in 12 European countries were requested to send relevant legislation. Legislation was quick scanned using World Health Organization guidelines. Overly restrictive provisions and provisions that contain stigmatizing language and incorrect definitions were identified. The selected provisions were scored into two categories: 1) barrier and 2) uncertain, and reviewed by two authors. A barrier was recorded if both authors agreed the selected provision to be a barrier (Category 1). Results National legislation was obtained from 11 of 12 countries. All 11 countries showed legal barriers in the areas of prescribing (most frequently observed barrier). Ten countries showed barriers in the areas of dispensing and showed stigmatizing language and incorrect use of definitions in their legislation. Most barriers were identified in the legislation of Bulgaria, Greece, Lithuania, Serbia, and Slovenia. The Cypriot legislation showed the fewest total number of barriers. Conclusion The selected countries have in common as main barriers prescribing and dispensing restrictions, the use of stigmatizing language, and incorrect use of definitions. The practical impact of these barriers identified using a quick scan method needs to be validated by other means. [ABSTRACT FROM AUTHOR]

Abstract: Context: Numerous attempts have been made to describe and define sedation in end-of-life care over time. However, confusion and inconsistency in the use of terms and definitions persevere in the literature, making interpretation, comparison, and extrapolation of many studies and case analyses problematic. Objectives: This evidence review aims to address and account for the conceptual debate over the terminology and definitions ascribed to sedation at the end of life over time. Methods: Six electronic databases (MEDLINE, PubMed, Embase, AMED, CINAHL, and PsycINFO) and two high-impact journals (New England Journal of Medicine and the British Medical Journal) were searched for indexed materials published between 1945 and 2011. This search resulted in bibliographic data of 328 published outputs. Terms and definitions were manually scanned, coded, and linguistically analyzed by means of term description criteria and discourse analysis. Results: The review shows that terminology has evolved from simple to complex terms with definitions varying in length, comprising different aspects of sedation such as indications for use, pharmacology, patient symptomatology, target population, time of initiation, and ethical considerations, in combinations of a minimum of two or more of these aspects. Conclusion: There is a pressing need to resolve the conceptual confusion that currently exists in the literature to bring clarity to the dialogue and build a base of commonality on which to design research and enhance the practice of sedation in end-of-life care. [Copyright &y& Elsevier]

Background: Family carers provide strong support for many older adults, often enabling older adults to remain at home. Little is known about the care recipients' perspectives of the role and contributions of family carers, particularly when hospital admissions occur as part of end of life care. Aim: This paper explores the meanings of family caring for care recipients by drawing on older adults' perspectives about the impact of hospital admission on established family caring relationships. Design: Exploratory semi-structured qualitative interviews. Key findings reported in this paper emerged from within the inductive research design. Setting: Interviews were conducted in older adults' place of residence in northwest England between June 2009 and July 2010. Participants: Participants were 27 older adults living with heart failure (n = 13) or lung cancer (n = 14), aged 69-89 years (mean 79 4.3 years) and considered by their health professionals to be in their last year of life. In 12 of the interviews, a family carer was also present and made contributions. Findings: For community-dwelling older adults, family carers are conceptualised as 'conductors'; making strong contributions to maintaining the rhythm of good care throughout the illness trajectory. Following older adults' hospital admission, family carers find themselves in the role of 'second fiddle', their ability to work with the individual and to make or influence decisions vastly reduced. Despite this, carers continue to invest considerable effort in maintaining continuity in the carer relationship to maximise the individual's wellbeing by identifying needs, filling gaps in provision and advocating on patients' behalf. Family carers act flexibly to provide continuity, support and take responsibility for older adults' wellbeing across settings. Conclusions: Nurses and family carers working together, and greater appreciation of the contribution and role of family carers by health professionals may contribute to improving the quality and continuity of care for older adults. [ABSTRACT FROM AUTHOR]

Abstract: Context: The End of Life Care Strategy for England highlights effective communication between patients and professionals as key to facilitating patient involvement in advance care planning. The strategy emphasizes that, currently, communication in patients with noncancer life-limiting conditions is likely to be inadequate, and research has identified that patients with chronic obstructive pulmonary disease and heart failure have a poor understanding of their condition. Objectives: To identify existing interventions of patient-professional communication developed for life-limiting conditions and explore the applicability of interventions developed within a cancer framework to other diagnostic groups. Methods: A comprehensive literature review of studies describing communication interventions for patients receiving end-of-life care was undertaken. Ten electronic databases were searched. Inclusion criteria were all English language studies relating to patient-professional communication interventions for patients with life-limiting conditions receiving end-of-life care. Results: Of the 755 articles initially identified, 16 met the inclusion criteria. Three core themes emerged from the synthesis of the literature: using education to enhance professional communication skills, using communication to improve patient understanding, and using communication skills to facilitate advance care planning. Conclusion: Although limited, evidence relating to the development and evaluation of communication interventions for patients with life-limiting illnesses would suggest that a successful intervention should include combined components of training, patient discussion, and education. In a context of limited resources and an increasing number of patients living and dying with chronic life-limiting conditions, the need for appropriate and effective communication strategies should be seen as a priority for both research and policy. [Copyright &y& Elsevier]

Abstract: We report patients, family members and health professionals’ experiences of Chronic Obstructive Pulmonary Disease (COPD) in Barnsley, northern England. A widespread belief that having “bad lungs” is part of normal ageing shapes everyday experience in this former mining town. People with COPD, and their families, link its cause to the areas industrial past and are sceptical of a medical orthodoxy that attributes cause to smoking. They doubt doctors’ objectivity. Encouraging uptake of care, promoting smoking cessation, and developing care planning would be enhanced by engaging with the significance of place in the social narrative of health evident in this town. [Copyright &y& Elsevier]

Context: Providing care that is shaped around the needs of patients, carers, and families is a challenge in the last months of life, as moves between home and institutions may be frequent. Despite this, there have been few studies of end-of-life transitions in the U.K.Objectives: To explore older adults' experiences as they move between places of care at the end of life.Methods: In-depth qualitative interviews and thematic analysis of the data were performed. Thirty adults aged between 69 and 93 years took part. All were judged by their physicians to be in the last year of life, diagnosed with heart failure (13), lung cancer (14), and stroke (3). Sixteen participants were from the lowest socioeconomic groups.Results: Four themes were identified from the data relating to 1) the prioritization of institutional processes, 2) support across settings, 3) being heard, and 4) dignity. As they moved between different settings, much of the care received by older adults was characterized by inflexibility and a failure of professional carers to listen. Liaison between and within services was not always effective, and community support after a hospital admission was perceived to be, on occasions, absent, inappropriate, or excessive.Conclusion: Qualitative study of transitions provides valuable insights into end-of-life care, even in countries where there are few financial barriers to services. This study has highlighted a need for continued attention to basic aspects of care and communication between professionals and with patients. [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]