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To examine the role of trained health and personal care assistants in supporting district nurses and family carers in providing palliative and end of life care in the community. In the UK, there is a policy directive to improve end of life care and to enable greater numbers of people to die at home. This places considerable demands on community nursing services and family carers. In response to this, the Complex and Palliative Continuing Care Service employing generic health and personal care assistants was developed as part of the Marie Curie Delivering Choice Programme in one city in the UK. This paper draws on findings from an independent evaluation of the scheme. The wider evaluation used a formative evaluation methodology. This paper draws on in-depth interviews with a range of stakeholders ( n = 17), in-depth interviews with bereaved carers ( n = 6) and an analysis of documentation. Stakeholders and bereaved carers perceived that the health and personal care assistants made a vital contribution to community palliative care. Careful recruitment, specific training, case management by district nursing with allocation of specific tasks and close ongoing communication were key features which stakeholders indentified. Family carers welcomed the way assistants developed relationships and became familiar and able to meet the care needs of patients. There were some problems reported which related to capacity, work flow and the need for extensive written care plans. Employing health care assistants under the supervision of district nurses appears to support patients and family at home during end of life care and contribute to good quality nursing care. The needs for community-based palliative and end of life care will increase rapidly over the course of the next 20 years, placing pressure on community nursing services and family carers. [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]

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]

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]

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]