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Background Given the globally ageing population, care homes have an important role in delivering palliative and end-of-life care. Advance care planning (ACP) is promoted to improve the quality of end-of-life care in this setting. While many professionals can be involved in ACP, little is known about what influences multi-professional involvement and how multi-professional working impacts the ACP process in the UK. This study investigated multi-professional practice in relation to ACP in nursing homes. Design and methods An ethnography was undertaken in two UK nursing homes using multiple methods of data collection: observations, interviews and document review. Participants included the following: nursing home residents (n  = 6), relatives (n  = 4), nursing home staff (n  = 19), and visiting health and social care professionals (n  = 7). Analysis integrated thematic analysis, mapping of resident ACP trajectories and documentary analysis. Findings This paper suggests that multi-professional and relatives' involvement in ACP was disjointed. Continuity and coordination were disrupted by misalignment of visiting professional and nursing home organisational structures. Findings show a 'knotworking' approach to teamwork and power imbalance between nursing home staff and visiting professionals, such as general practitioners. While residents wished their relatives to be involved in their ACP, this was not formally recognised, and limited support existed to facilitate their involvement. Conclusion The structure and organisation of multi-professional and relatives' involvement in ACP led to fragmentation of the process. This marginalised the voice of both the resident and nursing home staff, thereby limiting ACP as a tool to enhance quality of end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Access to affordable, appropriate housing is one of the key social determinants of health, affecting well-being across the lifecourse. However, beyond a recognition that housing quality is linked to place of death, little is known about the ways in which housing status impacts social, emotional, and practical aspects of dying and bereavement. Method: The Checking Out project is a qualitative study aiming to explore the ways in which socio-economic status impacts people's experiences of, and attitudes towards, death, dying, and bereavement in the United Kingdom. Qualitative interviews were carried out with 14 bereaved individuals with experience of poverty at end of life or in bereavement, and 15 professionals supporting individuals in low-income communities. Interviews were conducted via phone/video call, and data include experiences of end of life and bereavement both before and during the pandemic. Transcripts were examined using thematic analysis. Results: Housing emerged as an important factor affecting people's experiences, with 7 of the 14 bereaved individuals and all except 1 of the professionals discussing housing-related issues. Participants described ways in which unsuitable housing and housing insecurity impacted practical aspects of dying but also emotional and social well-being at end of life. Housing-related issues affected both patients and their families, though families found it difficult to air these concerns when their relative was dying. Conclusion: The paper demonstrates how trusted professionals are able to advocate or address the issues faced by bereaved individuals and suggests implications for policy and practice. A greater awareness of the potential impact of housing status across public services, including healthcare practitioners, welfare support, and housing providers, could better support patients and practitioners to address these issues proactively. Housing providers and policy-makers should be included as key partners in collaborative public health approaches to palliative care. [ABSTRACT FROM AUTHOR]

Background: Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. Methods: The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Results: Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a "void" created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. Conclusion: This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues. [ABSTRACT FROM AUTHOR]

Background: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. Aim: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. Design: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. Setting/participants: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. Results: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59–4.97, p = 0.33; large – aOR 0.65, 95% CI 0.18–2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. Conclusion: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes. [ABSTRACT FROM AUTHOR]

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. Aim: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services. Design: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework. Setting/participants: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. Results: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability : Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion : It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities : Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care : Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning : Sustained funding was often an issue for charitably funded organisations. Conclusions: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience. [ABSTRACT FROM AUTHOR]

Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric palliative care. Anecdotal evidence suggests that it is frequently underdiagnosed and undertreated, resulting in reduced quality of life. The development of a standardised paediatric breakthrough pain assessment, based on healthcare professionals' insights, could improve patient outcomes. This study aimed to explore how healthcare professionals define and assess breakthrough pain in paediatric palliative care and their attitudes towards a validated paediatric breakthrough pain assessment. This was a descriptive qualitative interview study. Semi-structured interviews were conducted with 29 healthcare professionals working in paediatric palliative care across the UK. An inductive thematic analysis was conducted on the data. Five themes were generated: 'the elusive nature of breakthrough pain', 'breakthrough pain assessment', 'positive attitudes towards', 'reservations towards' and 'features to include in' a paediatric breakthrough pain assessment. The definition and assessment of breakthrough pain is inconsistent in paediatric palliative care. There is a clear need for a validated assessment questionnaire to improve assessment, diagnosis and management of breakthrough pain followed by increased healthcare professional education on the concept. [ABSTRACT FROM AUTHOR]

Background: Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. Aim: To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. Design: An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. Setting/participants: Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients (n = 19), family carers (n = 23) and health care professionals (n = 33; n = 33 time 1, n = 20 time 2). Results: The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). Conclusions: Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff. [ABSTRACT FROM AUTHOR]

Background: The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children's palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. Methods: Drawing on contemporaneous research on producing evidence-based children's health information, we collaborated with leading children's not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. Results: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. Conclusion: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning. [ABSTRACT FROM AUTHOR]

Background: Healthcare assistants working in hospice at home settings have a pivotal role in supporting people dying at home and their family caregivers. Some healthcare assistants are working alone in patients' homes, which magnifies some of the issues reported for those working closely with other team members. There is a dearth of evidence in terms of education, training and support needs for healthcare assistants when working alone. Aim: To explore the role of newly employed lone working healthcare assistants delivering palliative care in the community, and their support and educational needs. Design: Qualitative exploratory study using semi-structured interviews. Setting/participants: Healthcare assistants (n = 16) employed less than 12 months by a national non-profit hospice and palliative care provider located across the UK. Results: Analysis of interviews identified three main themes: (1) Healthcare assistants have a unique and complex role catering for holistic needs of patients and their family caregivers in the home environment; (2) preparation for the complex role requires focus on experiential learning and specific training to support holistic care provision; (3) lone workers experience loneliness and isolation and identify peer support as a key intervention to support their wellbeing. Conclusions: Given the complexities of their role within community palliative care teams, there are key learning points in relation to healthcare assistant preparation. Education and support networks should be prioritised to reduce isolation and support ongoing learning and development of newly employed healthcare assistants; all of which is vital to ensure safety and quality of care for the growing number of people they support in the community. [ABSTRACT FROM AUTHOR]

Background: The need for end-of-life care in the community increased significantly during the COVID-19 pandemic. Primary care services, including general practitioners and community nurses, had a critical role in providing such care, rapidly changing their working practices to meet demand. Little is known about primary care responses to a major change in place of care towards the end of life, or the implications for future end-of-life care services. Aim: To gather general practitioner and community nurse perspectives on factors that facilitated community end-of-life care during the COVID-19 pandemic, and to use this to develop recommendations to improve future delivery of end-of-life care. Design: Qualitative interview study with thematic analysis, followed by refinement of themes and recommendations in consultation with an expert advisory group. Participants: General practitioners (n = 8) and community nurses (n = 17) working in primary care in the UK. Results: General practitioner and community nurse perspectives on factors critical to sustaining community end-of-life care were identified under three themes: (1) partnership working is key, (2) care planning for end-of-life needs improvement, and (3) importance of the physical presence of primary care professionals. Drawing on participants' experiences and behaviour change theory, recommendations are proposed to improve end-of-life care in primary care. Conclusions: To sustain and embed positive change, an increased policy focus on primary care in end-of-life care is required. Targeted interventions developed during COVID-19, including online team meetings and education, new prescribing systems and unified guidance, could increase capacity and capability of the primary care workforce to deliver community end-of-life care. [ABSTRACT FROM AUTHOR]

Most people in high income countries experience dying while receiving healthcare, yet dying has no clear beginning, and contexts influence how dying is conceptualised. This study investigates how UK physicians conceptualise the dying patient. We employed Scoping Study Methodology to obtain medical literature from 2006-2021, and Qualitative Content Analysis to analyse stated and implied meanings of language used, informed by social-materialism. Our findings indicate physicians do not conceive a dichotomous distinction between dying and not dying, but construct conceptions of the dying patient in subjective ways linked to their practice. We argue that the focus of future research should be on exploring practice-based challenges in the workplace to understanding patient dying. Furthermore, pre-Covid-19 literature related dying to chronic illness, but analysis of literature published since the pandemic generated conceptions of dying from acute illness. Researchers should note the ongoing effects of Covid-19 on societal and medical awareness of dying. [ABSTRACT FROM AUTHOR]

Background: Dementia is a life-limiting illness, but the trajectory of dying can be difficult to establish and care at end of life can be variable and problematic. Methods: This UK study was carried out to explore the end-of-life-care experiences of people with dementia from the perspective of their family carers. In-depth interviews were conducted with 40 bereaved family carers of people with dementia. Results: Forty family carers (male n = 9, female n = 31) age range: 18–86 years were interviewed. Issues with poor communication were common. The hard work of caring and issues regarding unpredictability of living and dying with dementia were also commonplace within the study. Only three patients were referred for specialist palliative care support at the end of life, all of whom had a dual diagnosis of dementia and cancer. Conclusion: This qualitative study has identified that there are several gaps in the end-of-life care of people with dementia, and frequently, there is poor communication during the last year of life. The need for high-quality integrated care for people dying with dementia with appropriate support during the last year of life is identified. COVID-19 has disproportionately affected people with dementia, and in the post-pandemic era, there is an urgent need to ensure every person dying with dementia is supported to die in their preferred place and that family members are supported and enabled to be treated as the 'expert' in terms of their knowledge of their relatives' care and preferences. [ABSTRACT FROM AUTHOR]

Aims and objectives To explore hospice, acute care and nursing home nurses' experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support. Background Pain management in end-stage dementia is a fundamental aspect of end-of-life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care. Design A qualitative study using semi-structured interviews and thematic analysis to examine data. Methods Twenty-four registered nurses caring for people dying with advanced dementia were recruited from 10 nursing homes, three hospices and two acute hospitals across a region of the UK. Interviews were conducted between June 2014-September 2015. Results Three core themes were identified: challenges administering analgesia, the nurse-physician relationship, and interactive learning and practice development. Patient-related challenges to pain management were universal across care settings; nurse- and organisation-related barriers differed between settings. A need for interactive learning and practice development, particularly in pharmacology, was identified. Conclusions Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required. Relevance to clinical practice Nurses considered pain management fundamental to end-of-life care provision; however, nurses working in acute care and nursing home settings may be undersupported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology. [ABSTRACT FROM AUTHOR]

Background: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. This study therefore aimed to explore GPs' EoLC educational needs and preferences for learning and evaluation. Methods: A qualitative focus group study was conducted with qualified GPs and GP trainees in the UK. Audio recordings were transcribed and analysed thematically. Expert review of the coding frame and dual coding of transcripts maximised rigour. Results: Twenty-eight GPs (10 fully qualified, 18 trainees) participated in five focus groups. Four major themes emerged: (1) why education is needed, (2) perceived educational needs, (3) learning preferences, and (4) evaluation preferences. EoLC was perceived as emotionally and clinically challenging. Educational needs included: identifying patients for palliative care; responsibilities and teamwork; out-of-hours care; having difficult conversations; symptom management; non-malignant conditions; and paediatric palliative care. Participants preferred learning through experience, working alongside specialist palliative care staff, and discussion of real cases, to didactic methods and e-learning. 360° appraisals and behavioural assessment using videoing or simulated interactions were considered problematic. Self-assessment questionnaires and patient and family outcome measures were acceptable, if used and interpreted correctly. Conclusions: GPs require education and support in EoLC, particularly the management of complex clinical care and counselling. GPs value mentoring, peer-support, and experiential learning alongside EoLC specialists over formal training. [ABSTRACT FROM AUTHOR]

Background: Being a mentor in any setting brings challenges in addition to recognised benefits. Working in a low-income country confers specific challenges including logistical and communication issues. The need to adequately support UK-based international health volunteers prior to, during and after their trip is recognised at government level. Whilst the need to support mentors is recognised little is known about their support needs. This study aims to explore the lived experience of mentorship in a low-income country and gain insight into mentors' support and information needs and the barriers and facilitators to mentoring. Methods: Purposive sampling was used to recruit UK-employed, palliative care clinicians: four consultants, two specialty trainees, and two nurses, who were mentors with an international palliative care project. Semi-structured telephone interviews were recorded and analysed using interpretive phenomenological analysis. Results: Participants became mentors to help others. Uncertainty about their achievements constituted a significant challenge. This study highlights the need to prepare mentors before their in-country visits by exploring motivation, describing the reality of international volunteering and ensuring realistic expectations. Post-trip debriefing is important for reducing uncertainty around trip outcomes and maximising transferable impacts. Challenges to mentoring were logistical, related to the concept of mentorship and cultural. Facilitators included shared passion, mentor credibility and serendipity. Conclusion: Awareness of the support needs of mentors and the facilitators and challenges to mentoring can improve mentor preparation and support. This may minimise potential negative emotional impact of being a mentor, maximise positive personal and professional impacts and improve in-country project impact. [ABSTRACT FROM AUTHOR]

Background: The Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale. It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research. Aim: To explore German- and English-speaking patients’ views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire. Methods: Bi-national (United Kingdom/Germany) cognitive interview study using ‘think aloud’ and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus. Setting/participants: Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community. Results: A total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. ‘mouth problems’) and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding ‘felt good about yourself’) and discussing them from both languages’ perspectives resulted in wider consideration of the items’ meaning, enabling more detailed refinement. Conclusion: Cognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages – to our knowledge the first such approach in palliative care – benefited the refinement. Psychometric validation of the refined Integrated Palliative care Outcome Scale is now underway. [ABSTRACT FROM AUTHOR]

Background: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. Aim: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia. [ABSTRACT FROM AUTHOR]

Aims and objectives To evaluate the introduction of Advanced Nurse Practitioners in a specialist, multi-professional palliative care context. The objective is to explore the core domains and competencies of the advanced nurse practitioner role in a multi-professional palliative care context. Background New models of health care and service delivery are emerging alongside expanded levels of autonomy, skills and decision-making for nurses and midwives. This has resulted in some confusion in the health service community internationally about the professional role and scope of the advanced nurse practitioner. Design A qualitative evaluation study (n = 21). Methods Three phases of data collection were conducted over 10 months . Twenty-one participants took part from a specialist palliative care unit in one health board in a UK region spanning ANPs ( n = 2) multi-professional staff ( n = 14) and patients/carers ( n = 5). Data collection methods included individual and focus group interviews with key stakeholders and observation of the advanced nurse practitioners at work and their reflexive diaries. Results The findings of this evaluation demonstrate that if the advanced nurse practitioner role can flourish it has the potential to shape 'new identities', re-construct the boundaries of nursing roles and emphasise the relationship based elements of excellent nursing work. Conclusions The advanced nurse practitioner has the potential to enhance specialist palliative care service delivery through fluid role boundaries. The context in which advanced nurse practitioner roles are developed is important as acceptance of the role is linked to the co-construction of a different nursing identity. Our findings support the need to define, defend and name the work of advanced nursing roles. Relevance to clinical practice The advanced nurse practitioner roles were regarded as providing a unique contribution to service delivery and were characterised by fluid role boundaries which crossed the traditional disciplinary boundaries between nursing and medicine. [ABSTRACT FROM AUTHOR]

Background: Approximately 600,000 people die in the UK annually, usually after months or years of increasing debility. Many patients with advanced conditions are not identified for appropriate support before they die because they are not seen as having "palliative" care needs. General practice information technology systems can improve care by identifying patients with deteriorating health so that their healthcare needs can be reviewed more systematically and effectively. The aim was to develop and test a computerised search of primary care records in routine clinical practice as a tool to improve patient identification for a palliative care approach. Methods: An iterative process of search design and testing followed by implementation and extended testing of the search output in clinical practice. A three-phase feasibility study: developing a computerised search, determining its ability to identify patients with deteriorating health from any advanced condition, and assessing how primary care clinicians use the results to improve patient care. The setting was twelve primary care teams in two Health Boards in Scotland. Results: The search identified 0.6-1.7 % of patients in each practice who were not already on the palliative care register. Primary care clinicians judged that 30-60 % of these patients were at risk of dying or deterioration over the next 6-12 months. The most common action taken by GPs was to start an electronic anticipatory care plan. Conclusions: It is possible to significantly improve the identification of patients for palliative care needs assessment using a computerised search however barriers remain to GPs' finding it acceptable. Time-efficient systems were important as was a generic tool for anticipatory care planning not linked to 'palliative' care. [ABSTRACT FROM AUTHOR]

Aims and objectives To explore and critically examine stakeholders' views and perceptions concerning the nurse-led Palliative Care Discharge Service in an acute hospital setting and to inform sustainability, service development and future service configuration. Background The drive in policy and practice is to enable individuals to achieve their preferred place of care during their last days of life. However, most people in UK die in acute hospital settings against their wishes. To facilitate individuals' preferred place of care, a large acute hospital in northeast England implemented a pilot project to establish a nurse-led Macmillan Palliative Care Discharge Facilitator Service. Design A pluralistic evaluation design using qualitative methods was used to seek stakeholders' views and perceptions of this service. Methods In total, 12 participants (five bereaved carers and seven health professionals) participated in the evaluation. Semi-structured interviews were conducted with bereaved carers who used this service for their relatives. A focus group and an individual interview were undertaken with health professionals who had used the service since its inception. Individual interviews were also conducted with the Discharge Facilitator and service manager. Analysis of all data was guided by Framework Analysis. Results Four key themes emerged relating to the role of the Discharge Facilitator Service: achieving preferred place of care; the Discharge Facilitator as the 'conduit' between hospital and community settings; delays in hospital discharge and stakeholders' perceptions of the way forward for the service. Conclusion The Discharge Facilitator Service acted as a reliable resource and support for facilitating the fast-tracking of end-of-life patients to their preferred place of care. Relevance to clinical practice Future planning for hospital-based palliative care discharge facilitating services need to consider incorporating strategies that include: increased profile of the service, expansion of service provision and the Discharge Facilitator's earlier involvement in the discharge process. [ABSTRACT FROM AUTHOR]

The article analyzes experience of senior medical and nursing staff on Advance Care Planning in relation to children and young people with life-limiting illnesses in the Paediatric Intensive Care Unit. The study results found recognition of an illness as life-limiting, Advance Care Planning as a multi-disciplinary process and pros and cons associated with Advance Care Planning.

The article cites a study which examines reported practice of Great Britain, Belgian and Dutch physicians and nurses. The study data was collected using qualitative case studies through interviews. British respondents reported a continuum of practice from the provision of low doses of sedatives to control terminal restlessness to rarely encountered deep sedation.

Background Family carers play an essential role in providing end-of-life care to their relatives but have been found to experience uncertainty and a lack of confidence in fulfilling their caregiving roles, prompting recent calls for educational or information based resources to be developed for carers. Methods We carried out four focus groups with Clinical Nurse Specialists, healthcare assistants, former and current carers at a hospice in the UK, to explore the information and support needs of family carers. Results Our findings support previous research by highlighting a number of care situations where carers experience uncertainty and could seemingly benefit from greater information or instruction. Three main themes were identified which reflected carer experiences and needs in relation to potential information giving or educational interventions. These have been described as the knowledge and competence of carers; the preparedness of carers and low levels of carer identification with, and confidence in their roles as 'carers', which influences help seeking behaviours; and in turn how potential supportive interventions might be received by carers. Conclusions Family carers experience multiple needs for information and education, but meeting these needs remains a challenge. Our results suggest three domains which could underpin this type of intervention: developing knowledge and competence; facilitating preparedness; supporting role recognition and confidence building. We recommend an integrated information giving approach which addresses these domains by combining a resource pack for carers with a more explicit acknowledging role for health professionals. Together these could provide key information and also build confidence amongst family carers to ask for further support and advice as needed. [ABSTRACT FROM AUTHOR]

Research literature has highlighted unusual phenomena occurring at the end of life. Palliative-care professionals often feel ill-prepared in managing these and in talking to patients and family members about them. This study aimed to explore the meanings and interpretations ascribed to these phenomena by palliative-care professionals. Eight participants were interviewed, and interpretative phenomenological analysis used to identify themes within their accounts. Four themes emerged from the analysis: (1) Who are we to say what's out there?: a connection with something beyond what can be seen; (2) It opened up conversations: the experience of talking about unusual experiences; (3) It knocked me sideways: managing the emotional impact of these experiences; and (4) The fact that she was so accepting made it easier: the value of acceptance in relation to unusual experiences. These findings are discussed within the context of existing literature and implications for palliative-care professionals are discussed. [ABSTRACT FROM AUTHOR]

Aims To explore if and how information about a transition to a palliative care approach was communicated to patients recently discharged from hospital and who fulfilled standardized criteria for palliative care need. Background Palliative care philosophy and, more recently, UK palliative care policy, endorse a context of 'open' awareness, where all parties openly acknowledge that the patient's death is approaching. The perceived benefits of making the patient aware of their prognosis encompass a variety of planning activities, which mean that death, when it occurs, is arguably more in keeping with the wishes of the patient. Design A qualitative inductive interview study conducted in 2010-2011. Methods Fifteen semi-structured interviews were conducted with 15 patients and 3 family carers. All patients were identified as having palliative care needs according to standardized criteria, 3-6 months after discharge from hospital. A thematic analysis was undertaken. Findings Contrary to the professed ideal of 'open' awareness, some participants were only partially aware and others wholly unaware that they were likely to be approaching the end-of-life. Those identified as unaware were over 85. Participants displayed a reluctance to acquire knowledge which would require them to face the imminence of death. Conclusion Philosophy and policy aside, people do not always conform to the autonomy paradigm of a self-directed life followed by a self-directed death. [ABSTRACT FROM AUTHOR]

Aim To explore the impact of being a family carer to patients with stage 5 chronic kidney disease managed without dialysis. Background Increasing numbers of patients with renal disease worldwide are making the decision not to embark on dialysis. This group has significant physical and psychological symptom burdens similar to or greater than those in advanced cancer patients. Little is known about the impact on family carers. Design Exploratory, qualitative design. Methods The study was undertaken with 19 carers caring for patients managed in a Renal Supportive Care Service in the UK between 2006-2008. Sixty-one semi-structured interviews and detailed field notes inform the analysis. Findings 'Caring from diagnosis to death' was the overarching theme illustrated by three sub-themes: (i) Caregiver's plight - making sense of the disease and potential deterioration; (ii) Having to care indefinitely; and (iii) Avoiding talk of death. 'Caring from diagnosis to death' coincides with an original concept analysis of renal supportive care, which is considered an adjunct to the management of patients with renal disease at all stages of their illness. Conclusion There is a clear need for further research internationally and theory-based nursing interventions to support carers of patients managed without dialysis. The development of a holistic, integrated care pathway based on carer perspectives, which includes identification of information needs related to original diagnosis, associated comorbidities, treatment options, prognosis, and assistance in developing strategies to manage communication with patients as the end of life approaches, is required. [ABSTRACT FROM AUTHOR]

The article discusses a study that investigated the experiences of health care practitioners working in palliative care and established issues related to end-of-life care for people with dementia. It identified 4 themes and noted that, despite good practice in this area, there are ongoing barriers to timely and appropriate transitions to palliative care for people with dementia and their families. Some recommendations for policy and practice development are included.

The article discusses a research exploring the views and expectations about living and dying among care home residents and how their views are affected by their experience in the care home. Study reveals that people living in care homes are not different from the rest of the population and the deaths of other residents do not shape their views and priorities for end-of-life care. The findings can help introduce, discuss and tailor existing frameworks and programmes of end-of-life care.

Introduction: Since April 2009, indicators for the UK Quality and Outcomes Framework pilot have been developed and piloted across a nationally representative sample of practices. In October 2009 a single palliative care indicator was piloted for 6 months that looked at, ‘the percentage of patients on the palliative care register who have a preferred place to receive end-of-life care documented in the records’.Aim: The aim of this study was to gain the views and experiences of general practice staff on whether the inclusion of a single incentivized indicator to record the preferred place to receive end-of-life care would improve the quality of palliative care. Any issues arising from its implementation in a pay-for-performance scheme were also explored.Methods: Interviews took place with 57 members of staff in 24 practices: 21 GPs, 16 practice managers, 12 nurses and eight others (mostly information technology experts).Results: The indicator was not deemed appropriate for incentivization due to concerns about incentivizing an isolated, single issue within a multi-faceted, multi-disciplinary and complex topic. Palliative care was seen to be too sensitive and patient specific to be amenable to population-level quality measurement. In implementation, the indicator would pose potential harm to patients who may be asked about their end-of-life care at an inappropriate time and by a member of staff who may not be best placed to address this sensitive topic.Conclusions: The most appropriate time to ask a patient about end-of-life care is subjective and patient specific and therefore does not lend itself to an inflexible single indicator. Focusing on one isolated question simplifies and distracts from a multi-faceted and complex issue and may lead to patient harm. [ABSTRACT FROM PUBLISHER]

Objective: To examine and compare doctors’ and nurses’ views and experiences regarding outcome measurement in palliative care, including patient-reported outcome measures (PROMs).Methods: A web-based survey developed through expert review and piloting was conducted in Europe and Africa with palliative care professionals working in clinical care, audit and research.Results: The overall participation rate was 42% (663/1592) and the overall completion rate was 59% (392/663). Of these respondents, 196 were doctors (51% male, mean 47 years) and 104 were nurses (84% female, mean 45 years). Doctors’ most common reported reasons for not using tools were time constraints followed by lack of training. For nurses, it was lack of training followed by time constraints. Provision of information and guidance influenced willingness to use measures. For those that used tools, most reported favourable outcome measurement experiences. Both prioritized brief PROMs, and measures that included physical and psychological domains. For clinical purposes, the main advantage for doctors was assessment/screening, and clinical decision making for nurses. For research, doctors were most influenced by a measure’s comparability with national/international literature followed by its validation in palliative care. For nurses, validation in palliative care was followed by tool access.Conclusion: Overall these respondents shared similar views and experiences, and both were influenced by similar factors. Multidisciplinary outcome measurement education and training is feasible and required. Multidimensional and brief PROMs that include physical and psychological domains need to be prioritized, and access to freely available, validated and translated tools is needed to ensure cross-national comparisons and coordination of international research. [ABSTRACT FROM PUBLISHER]

Background: the need for access to high-quality palliative care at the end of life is becoming of increasing public health concern. The majority of deaths in the UK occur in acute hospitals, and older people are particularly likely to die in this setting. However, little is known about the barriers to palliative care provision for older people within acute hospitals.Objective: to explore the perspectives of health professionals regarding barriers to optimal palliative care for older people in acute hospitals.Methods: fifty-eight health professionals participated in eight focus groups and four semi-structured interviews.Results: participants identified various barriers to palliative care provision for older people, including attitudinal differences to the care of older people, a focus on curative treatments within hospitals and a lack of resources. Participants also reported differing understandings of whose responsibility it was to provide palliative care for older people, and uncertainly over the roles of specialist and generalist palliative care providers in acute hospitals.Conclusions: numerous barriers exist to the provision of high-quality palliative care for older people within acute hospital settings. Additional research is now required to further explore age-related issues contributing to poor access to palliative care. [ABSTRACT FROM PUBLISHER]