The developing role of children's nurses in community palliative care

This article addresses some of the contemporary issues in relation to providing palliative care for children in Ireland, particularly focusing on the creation of the specialist palliative care nursing outreach posts. The recent publication of an Irish national policy on palliative care for children with life-limiting illness is welcome news for paediatric nurses in Ireland. Children are valued members of society and have a right to receive quality health care and support appropriate to meet both children and the families' precise needs. However, community services for children with life-limiting illnesses remain inadequate, with many parents and families struggling to provide palliative care for children in the home. Currently, community nurses, who are not always registered children's nurses, are providing palliative care for children at the end of life. These nurses may not fully understand the specific needs of critically or chronically ill children and their families. In addition, there are no specific palliative care educational programmes in Ireland with regard to end-of-life care for children. The challenges of providing palliative care to children and their families in relation to symptom control, controversial ethical and legal issues, and emotional and practical support, mean that advanced knowledge is required in order to progress the agenda and thus provide excellence in children's palliative care in Ireland. It is important that the agenda is moved forward so that children and their families requiring palliative care and nursing support do not suffer from a lack of professional provision for their needs.     

Reviewing a new model for delivering short-term specialist palliative care at home

The transition period between inpatient and community care is often a time of anxiety for patients receiving palliative care and their families. The team at Michael Sobell House designed and implemented a new community palliative care nursing service in order to ease the difficulties associated with moving between these settings. The new model offered short-term support for nurses trained in specialist palliative care who provide hands-on care, psychological support, night nursing or advice and support. The service supplemented existing community teams in order to offer a quick response to patient need. The service was evaluated at the end of the first year using two methods: an audit examining the first year's activity; and a questionnaire to health professionals who had used the service. Insight into the origins of referrals, the tasks performed by the outreach nurses and the aims of each patient episode were gained. Healthcare professionals' feedback was positive and gave some areas for suggested improvement. Reflections included issues relating to collaborative working between services, gaining a greater understanding of the problems associated with facilitating a home death and exploring potential areas of service expansion.     

Impact of the Powys Macmillan GP clinical facilitator project: views of health-care professionals

The UK charity, Macmillan Cancer Relief, commissioned a 3-year pilot project employing 12 GP clinical facilitators (GPCFs). The aim was to raise the standard of generalist palliative care, provide extended clinical palliative care and provide a coordinated framework for commissioning specialist palliative and cancer care in Powys, rural Wales. As part of the comprehensive evaluation, surveys of GPCFs, GPs, district nurses and community hospital nurses were undertaken in order to record changes in palliative care activity, specialist palliative care services and training needs. Services providing 24-hour nursing and social services were perceived as in need of development. Referrals to Macmillan nurses increased by 40% and GPs reported that time spent on palliative care increased, on average, from a quarter of a day to half a day per week, although district nurses reported a reduction in palliative care activity. The majority of nurses thought that the GPCF's contribution was important. The use of local palliative care guidelines increased significantly among district nurses by the end of the project.     

Palliative care services in England: a survey of district nurses' views

Good access to health and social services is essential to enable palliative care patients to remain and die at home. This article reports on a survey of perceptions of availability of such services by district nursing teams (651 respondents) across eight cancer networks in England. Only just over half of respondents thought GP home visits and specialist palliative care assessment were always available. Many district nurses reported, at best, only sometimes being able to access inpatient palliative care beds, respite care, Marie Curie/night sitting services or social work assessment. Wide variation in access to all services was reported between cancer networks. Equitable provision of services is essential if more patients are to be cared for and die at home, but our results indicate considerable room for improvement. Primary care trusts, cancer networks and strategic health authorities must work together to ensure minimum standards of access nationally if the recommendations of the NICE guidance on supportive and palliative care are to be achieved.     

Nurses and palliation in the community: the current discourse

A core component of community nursing practice in Australia is the provision of palliative care, however this area of practice has been minimally researched. We, therefore, undertook a broader review of the contemporary literature in community nursing; palliative nursing; and community nursing palliative care. Literature was searched electronically in OVID, CINAHL and nursing databases and manually in relevant journals. Findings revealed community and palliative care nursing to be both complex and challenging. Community and palliative nurses ideals for care are compromised by competing practice demands. Changing health systems and philosophical views, limited resources and the perceived 'visibility/invisibility' polarity are identified as major job stressors. Therapeutic use of 'self' and interpersonal communication are recognized as contributing to job satisfaction. Community nurses providing palliative care is as an under researched area yet it is a role that arguably requires critical understanding and recognition. Further research is needed into the relationship between emotional well-being and professional satisfaction for community and palliative care nurses providing palliation.     

Palliative care in non-malignant disease: a pragmatic response

With increasing requests for palliative care provision for all patients regardless of diagnosis, professionals within specialist palliative care services and palliative care nurse specialists need to consider how they will respond. Current palliative care is considered inequitable as the majority of palliative care services do not include those with non-malignant disease. This article examines a number of issues concerning the extension of palliative care to this patient population. It considers the needs of non-cancer patients, palliative care responsibilities, resource implications, professional knowledge and responsibilities, and possible action. Recommendations include the need for further research to explore these patients' needs and the role of specialist palliative care services. Suggestions regarding how Macmillan nurses could respond to the increased demand for palliative care services are offered. Within the current financial climate, the only realistic response for the Macmillan nurse is to act as a consultant working in collaboration with other health professionals outside the palliative care specialty.     

Weaving the seamless web of care: an analysis of parents' perceptions of their needs following discharge of their child from hospital

Changes in children's nursing services in the United Kingdom in recent years have focused on the need for adequate and efficient services to be provided in the interests of the child. Early discharge is now the norm and children are often sent home in an earlier recovery stage than adults with comparable conditions. Whilst the contributions of paediatric community nursing services have gone some way to providing specialist nursing care for children and their families in their own homes, the majority of children are discharged home without such support being available. This may place an overwhelming responsibility of caring for a recovering child onto parents. The purpose of the qualitative research reported in this paper was to identify any gaps in nursing services for acutely sick children and their families following discharge, and to suggest ways to improve integration and communication between hospital and primary care to facilitate a 'seamless web of care' for families. Families were surveyed following discharge (n=164) and interviews carried out with those experiencing problems (n=20). General practitioners were also surveyed for their opinion as key contributors of primary care. Findings revealed the isolation felt by parents following discharge, with their need for information about a child's illness and expected recovery, and for reassurance and specific advice through some means of support, which was clearly not being met. The perceived benefit of continuity of care was a common theme, with both parents and professionals acknowledging the importance of closer liaison between hospital and primary health care services. This study is valuable in providing preliminary qualitative information regarding the gaps in children's nursing services and how these can be overcome by using our present resources more imaginatively, in order to ensure the delivery of cost-effective and quality health care services in the best interests of local need.     

Roles, service knowledge and priorities in the provision of palliative care: a postal survey of London GPs

OBJECTIVES: To explore general practitioners' (GPs) current involvement in and attitudes towards the provision of palliative care in primary care. METHODS: Postal survey of 356 London-based GPs, assessing attitudes towards palliative care provision, district nursing and specialist palliative care services, and priorities for future service development. RESULTS: Currently, 65% of GPs were providing palliative care to patients on their list; 72% agreed or strongly agreed palliative care was a central part of their role; and 27% wanted to hand care over to specialists. Most GPs (66%) disagreed with the statement that 'palliative care is mainly district nursing (DN) work'. Many were unaware of out-of-hours DN and specialist palliative care services. Multi-variable analysis found four GP characteristics--larger practice size, more years experience as a GP, receipt of palliative care education, and current provision of palliative care--were associated with agreement that palliative care was central to a GP's role. CONCLUSION: A minority of NHS GPs in London would rather have no involvement in palliative care in primary care. Knowledge of current services for palliative care is generally poor among GPs. These findings highlight potential gaps in services, particularly in small practices. Specialists will need to consider these factors in working with GPs to develop primary palliative care and to enable greater access to specialist palliative care.     

Recruitment into palliative care research studies: a common challenge

Abstract

This project explores the use of analogue videophones between rural palliative care nurses and their more remote general nursing colleagues caring for palliative care patients in surrounding communities. The videophones were easily transported and were most often used when the general nurses were visiting patients' homes where they plugged the videophones into the telephone line. This supplemented the specialist palliative care visits. The nurses completed questionnaires to document their experience. The major advantages cited by the palliative care nurses were that vision enhanced their communication with the patients and travelling time was saved, while the remote nurses believed that access to palliative care expertise was improved. The major disadvantages were the limitations of the equipment available and dropout during calls, while technophobic nursing staff and the high turnover of remote staff made it difficult to develop expertise in using these phones. Videophones are useful in extending the outreach of palliative care nurses.     

Rural palliative care needs: a survey of primary care professionals in Powys, Wales

The county of Powys in rural Wales has a population of about 125,000 people and no district general hospitals. In 1999, 12 Macmillan general practitioner clinical facilitators were appointed as part of a pilot project aiming to provide a coordinated framework for the commissioning of specialist cancer and palliative care services, extended clinical care to cancer and non-cancer patients, and an educational intervention to raise the standards of generalist palliative care. A survey of facilitators, general practitioners, district nurses and community hospital nurses was undertaken early in the project. Palliative care formed a small but significant part of respondents' workload. Specialist palliative care services were seen as helpful but distant from the patients. Pain and symptom control were seen to be problematic in patients with diagnoses other than cancer. Services that provided 24-hour nursing care at home were thought to be in need of development by most respondents.     

Lung cancer, caring for the caregivers. A qualitative study of providing pro-active social support targeted to the carers of patients with lung cancer

INTRODUCTION: Carers of patients with lung cancer often have a short time to access the support they require. The Macmillan Carers Project (MCP) was set up to provide non-clinical social support targeted in the community to the carers of patients with lung cancer and this study describes its evaluation. METHODS: Prospective case study using interviews with the carers, project workers and health and social care professionals to obtain qualitative data for thematic analysis. 81 patients' carers received support from the MCP; 20 carers, 2 MCP workers and their manager and 10 other professionals (chest consultant physician, lung cancer clinical nurse specialist, GP, four Macmillan nurses, hospice social worker and two community social workers) were interviewed. RESULTS: Patients were predominantly male (62%), mean age 71 years and carers were predominantly female (70%) mean age 63 years. Carers identified the MCP as providing emotional support, more time, practical help, financial advice, information and back-up for a myriad of problems. Although there was some overlap with other services, the MCP was valued by carers and professionals as filling a gap in social care. CONCLUSIONS: The unique aspect of this study was support targeted to the carers of a single cancer site (lung) rather than generic cancer support. As lung cancer may progress rapidly, patients and their carers have a short time to gather new information, access services and adjust to their new circumstances and roles. By focusing on the needs of carers from the time of lung cancer diagnosis, we have shown that the MCP was a valued additional service, well received by carers, patients and professionals.     

Self-reported competence in long term care provision for adult cancer survivors: A cross sectional survey of nursing and allied health care professionals

BackgroundCancer survival is increasing as patients live longer with a cancer diagnosis. This success has implications for health service provision in that increasing numbers of adults who have received cancer therapy are requiring monitoring and long-term health care by a wide range of practitioners. Given these recent trends there is a need to explore staff perceptions and confidence in managing the consequences of cancer diagnosis and treatment in cancer survivors to enhance an integrated cancer service delivery.ObjectiveThis study examines the self-reported perceptions of competence in nurses and professionals allied to medicine providing survivorship services caring for adults after cancer treatment in both secondary and primary care.DesignA cross sectional survey of the adult cancer workforce using a self-assessment tool for assessing confidence in providing long-term cancer patient management. This study was a health service evaluation.SettingThe study was conducted within the United Kingdom.ParticipantsRespondents were 618 health care professionals of these 368 were specialist adult cancer nurses in oncology and the community setting and 250 cancer allied health professionals.MethodThe survey tool was developed with experts in cancer management, nurses professionals allied to medicine such as physiotherapists and dieticians, educationalists, patient groups as well as health service managers. Competence was assessed in 4 domains clinical practice, symptom management, care co-ordination and proactive management. Perceptions of training needs were also ascertained. Data were collected using an Internet survey distributed through cancer services, community settings and professional institutions.ResultsIn total 618 practitioners who responded were providing services for adults’ 1-year post cancer therapy. Practitioners felt confident in managing psychosocial care and communicating with patients. Deficits in self-reported confidence were found in long-term medications management, care planning, long-term and complex symptom management, for those providing dimensions of care coordination and proactive care. Differences in confidence were seen between practitioner groups. Community nurses felt less skilled in managing adult cancer patients long-term.ConclusionsNurses and allied health professionals self-reported confidence, in managing all areas of care for adult cancer survivors, is variable with deficits in important areas of practice. Despite this being a small proportion of practitioners who are working in cancer care, those responding had perceived gaps in knowledge and educational needs. In providing cancer aftercare there is a requisite shift to proactive care, supported self-management and collaborative management if patient's long-term consequences of cancer and its treatment are to be addressed.Implications for practiceIf health care providers are to transform cancer survivor services then investment is required in education and capability planning across nurses, allied health professionals in both the hospital and the community setting.     

Modernising cancer and palliative care education in the UK: insights from one Cancer Network.

This article reports on a scoping study into cancer education provision in one UK Cancer Network. A range of professionals (nurses, allied health professionals (AHPs), health care support workers and educationalists) were invited to participate in focus group or individual interviews, or to return questionnaires regarding their perceptions of training needs and current opportunities. This yielded data from a total of 94 participants. In addition, curriculum documents from local universities were subjected to thematic analysis. Findings from the relevant section of The National Cancer Patient Survey were also considered to provide insight into the expressed needs of local service users. Most cancer and palliative care education was directed towards nurses employed in specialist oncology settings. Some groups appeared to be poorly served (including community nurses, senior nurses and AHPs). No evidence could be found of inter-professional cancer or palliative care education within the university sector. Curriculum content did not appear to reflect the ethnic diversity or socio-economic deprivation that characterised the local heath economy. Further research is needed to determine how best to ensure that continuing professional education reflects the needs of all practitioners involved in cancer and palliative care.     

Exploring bereavement care in inpatient settings

This paper compares the attitudes and practices of health professionals to the provision of family-centred bereavement care in different Australian inpatient settings: palliative care services, acute care and long stay residential aged care settings. Semi-structured interviews (88) were conducted with doctors, nurses, pastoral carers and allied health staff. Comprehensive bereavement care was not being provided or resourced in the acute and aged care hospitals to the same level as that provided in palliative care services. Residential care provided continuity of care and good support for grieving relatives and other residents. A structured bereavement program is needed in all inpatient settings with palliative care patients, along with resource and education support for health professionals.     

A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer

Aims. This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home‐based palliative and end‐of‐life care to people with advanced cancer. Background. Modern hospice care has led to increases in home‐based palliative care services, with informal caregivers assuming responsibility for the majority of care. In response, health policy emphasises the provision of palliative care services in which both the patient and carer receive adequate support throughout illness and death. While the emotional needs of carers have been extensively researched, their practical needs with respect to the provision of physical care are yet to receive systematic attention. Design. Systematic review. Methods. Eligible articles were identified via electronic searches of research and evidence‐based databases, hand‐searching of academic journals and searches of non‐academic grey literature websites. Quality of research was assessed via accepted guidelines for reviewing non‐randomised, observational and qualitative literature. Data were synthesised by comparing and contrasting the findings to identify prominent themes. Results. Research consistently highlights this lack of practical support, often related to inadequate information exchange. These deficits typically manifest in relatives adopting a ‘trial and error’ approach to palliative care. Informal carers request a greater quantity of practically‐focussed information, improvements in quality and increased methods of dissemination. Conclusion. Synthesis of the literature suggests that home‐based palliative care services have been insufficiently focussed on assisting informal caregivers acquire practical nursing skills. Relevance to clinical practice. Enhanced access to professional advice represents a potentially effective method of increasing carers’ confidence in their ability to undertake practical aspects of home‐based care. Evidence suggests that nurses and other health providers may better assist home‐based carers by providing the information and skills‐training necessary to facilitate this. This may necessitate the involvement of carers in the design and testing of new educational interventions.     

The specialist palliative care nurse: a qualitative study of the patients' perspective

BACKGROUND: Relatively little is known about patients' perceptions of the work and role of the specialist palliative care nurse. Understanding the patients' perspective can help to evaluate services, improve quality of care, and identify misunderstandings. OBJECTIVES: To explore the experiences of those who said that they had a 'terminal illness', focusing on patients' perceptions of the work and role of these nurses. DESIGN: Qualitative study with narrative interviews. SETTING: England and Wales. PARTICIPANTS: Forty-one people recruited through those working in hospices, community nurses, general practitioners, support groups, a national newspaper, and a conference on palliative care. Twenty-five people talked about the work of specialist palliative care nurses. METHOD: Interviews were fully transcribed; followed by a thematic analysis with constant comparison. RESULTS: Patients valued the nurses' work, particularly their advice on practical matters, information given about their disease, emotional support, advice on symptoms, and help with communication. They were glad that help was readily available. However, some patients who had been referred to the service did not realise that specialist palliative care nurses may be involved at a relatively early stage in a person's illness, and sometimes felt distressed by an early referral. One woman felt she had not had the emotional support she needed and another knew of women who had been upset because these nurses had discussed topics such as place of death 'too early'. However, people recognised the difficulties nurses faced in their work. CONCLUSIONS: Although our study differs from other studies, particularly in the way people were recruited, our findings support previous studies that have shown that specialist palliative care nurses are highly valued by those who have a terminal illness. It is important for people to understand that these nurses may be involved from the time of diagnosis and that roles have changed.     

End of life care: a discursive analysis of specialist palliative care nursing

AIM: The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. BACKGROUND: Contemporary specialist palliative care in the United Kingdom can be said to have two main client groups: the majority are people with a diagnosis of cancer, and a minority are those with a number of other chronic illnesses. From the evidence to date, patients dying from chronic, non-malignant disease experience a considerable number of unmet needs in terms of symptom control and psychosocial support. Although debates in the literature over the last decade have challenged the focus of specialist palliative care services on patients with a cancer diagnosis, only a minority of those with other chronic illnesses receive specialist palliative care services. DISCUSSION: Current models of specialist palliative care may not be the most appropriate for addressing the complex problems experienced by the many patients with a non-cancer diagnosis. We suggest that care should be structured around patient problems, viewing specialist palliative care as a service for those with complex end of life symptoms or problems. A role for innovative nurse-led care is proposed. CONCLUSION: Reframing the approach to specialist palliative care in the United Kingdom will require great effort on the part of all health and social care professionals, not least nurses. Critical and creative thinking are prerequisites to the development of new models of working. We suggest that a more coherent approach to research and education is required, in particular strategies that explore how patients and nurses can work together in exploring experiences of illness in order to develop more proactive approaches to care.