District nurses' perceptions of palliative care services: part 2

The overall aim of this study was to examine district nurses' (DNs') perceptions of palliative care services within the community setting. A questionnaire which focused on the key areas of defining palliative care, perception of roles, communication, service provision and the education and training needs of DNS was used. This was designed following a review of the literature and combined with data from phase one of the study (Vol 5(5): 215-222), which involved focus group interviews with DNs. The questionnaire was distributed to district nursing sisters (n = 66) within two community trusts in Northern Ireland. Findings suggest that the physical 'doing' aspects of care continue to dominate DNs' perceptions of palliative care and their educational needs. However, the supportive element of the DN's role was also identified alongside the potential role as coordinator. Palliative care service provision was considered adequate and the main services that nurses identified as useful related to the provision of 24-hour care. The main factors identified by nurses as influencing service provision related to organizational issues such as inadequate staffing levels, limited resources and a lack of time.     

Changes in community nursing in Australia: 1995-2000

AIM: This paper reports a study whose aim was to examine the congruence between community nurses' perceptions and the realities of changes in their work. BACKGROUND: There have been increasing challenges to the delivery of community nursing services in Australia over the past decade. Acute care sector changes and the recent focus on health promotion, prevention, early identification and intervention adds pressure and creates tensions for community nurses, which are well-documented in the literature. There is, however, a lack of empirical evidence of actual changes in community nurses' workloads and the focus of their work. Validation of nurses' perceptions would enable them to have a stronger voice in the future development of community health care. METHODS: Four sources of data were used: community health client administrative data 1995-2000; occasions of service data 1995-2000; staffing numbers 1998-2001; and interviews with 14 community nurses in late 2001. RESULTS: Documentary evidence shows that there has been a large increase in the number of adult clients, and all clients are increasingly receiving a shorter, more intensive, clinically focussed service and are then discharged from care, rather than receiving a lower intensity service over a longer period of time. Staffing numbers have not increased to match this higher acuity and intensity. These changes were echoed by the nurses, who reported that expanded acute care roles were impacting on their workload and resulting in a loss of holistic primary health care focus. There has been a lack of leadership and proactive planning by community nurses in response to these changes. CONCLUSION: Community health care in Australia is shifting from primary to short-term clinical care. Greater opportunities for community nurses to engage proactively in defining and promoting their role in the health care system are needed in order to ensure an appropriate balance of acute clinical and holistic primary health care in the community.     

Palliative care in the community: the challenge for district nurses

Palliative care is expanding out of the hospice, and out of the narrow confines of its association with cancer. It should be a part of all care. District nurses are ideally placed to implement and coordinate palliative care in the community, making use of the talents of many other agencies and professionals. However, because of a lack of communication between these agencies, there is confusion about their roles, and many patients may not be receiving optimal care. This article argues that by promoting interagency and interprofessional communication and cooperation, district nurses can strengthen their role at the heart of palliative care provision in the community.     

Palliative care for patients with cancer: district nurses' experiences

AIM: This paper reports a study exploring district nurses' experiences of providing palliative care for patients with cancer and their families. BACKGROUND: There is an increasing demand for palliative care in the community, as many patients wish to die at home. District nurses are central to providing palliative care in the community, but there is a dearth of literature on district nurses' experiences in palliative care. METHOD: A Husserlian phenomenological approach was adopted with a purposive sample of 25 female district nurses. Data were collected using unstructured, tape-recorded interviews and analysed using Colaizzi's seven stages of data analysis. FINDINGS: Four themes were identified: the communication web; the family as an element of care; challenges for the district nurse in symptom management and the personal cost of caring. CONCLUSIONS: District nurses' experiences of providing palliative care to family units was challenging but rewarding. The emotive nature of the experience cannot be under-estimated, as many district nurses were touched by the varying situations. Whilst acknowledging the need to maintain an integrated approach to care, district nurses should be identified as the key workers in the complex situation of palliative care.     

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.     

Supporting cancer patients with palliative care needs: district nurses' role perceptions

The aim of this study was to examine UK district nurses' perceptions of their role in supporting palliative care cancer patients. Patients with cancer are living longer with the disease. District nurses are the largest UK workforce caring for people with cancer at home, the preferred place of care. Meeting patients' supportive and palliative care needs is complex. Little is known about district nurses' supportive role in the early phase of palliative care. Semistructured interviews were conducted with 34 district nurses. Data were analyzed thematically, with assistance from Atlas/ti. A dominant theme emerging from the interviews was ambiguity in the district nurses' supportive role in early palliative care. District nurses discussed the importance of making contact early on to support cancer patients and their families but had difficulty articulating this "support." Ambiguity, lack of confidence, and perceived skill deficits presented district nurses with dilemmas that were difficult to resolve. District nurses have great potential for meeting cancer patients' supportive and palliative care needs, a potential not currently realized. Education alone is unlikely to improve practice without an understanding of the tensions faced by district nurses in their work. Recognizing and addressing dilemmas in the everyday work of district nurses is central to moving practice forward.     

Meeting complex needs: an analysis of Macmillan nurses' work with patients

Macmillan nurses, working as Clinical Nurse Specialists (CNS), are in many ways the public face of specialist palliative care in the UK. However, the way in which they manage their clinical workload is not well understood. Questions about this aspect of their work have emerged from a large-scale evaluation of Macmillan nursing in 12 sites in the Trent and Thames regions of the UK, funded by Macmillan Cancer Relief. This article focuses on how Macmillan nurses enact their patient care role, drawing on caseload data, diaries and semi-structured interviews from the wider evaluation. It concentrates on the following issues: characteristics of referred patients; nature of interventions given; division of time between different aspects of the CNS role; nurses' perceptions of their patient-care role. Findings suggest that activities associated with direct patient care account for the majority of nurses' time, with little time spent in any other individual aspect of the CNS role. The delivery of care to older patients at the end of life is a major part of Macmillan nurses' clinical role. Issues relating to the educational and support needs of Macmillan nurses are raised.     

Nurses' and patients' perceptions of expert palliative nursing care

AIM: This paper reports a study of the perceptions of patients and nurses of palliative care and, in particular, the concept of the expert palliative nurse. BACKGROUND: Palliative care is a growing specialty and is practised globally. There is, however, limited information on patients' views about palliative care. While the idea of expertise in nursing is not new, few studies have explored the concept of the expert nurse in palliative care. Some evidence exists on palliative nurses' perceptions of their care, that it is supportive and involves maintaining therapeutic relationships with patients. Facing a terminal illness has been identified as a stressful and fearful experience that affects all aspects of life. It has also been revealed that dying patients may have unmet care needs, mainly in the areas of pain and symptom control, emotional support, and spending time alone. METHODS: A phenomenological study was carried out, using in-depth interviews and thematic content analysis. A convenience sample of 22 Registered Nurses and 22 dying patients was interviewed in 1996-1997. FINDINGS: Dying patients had a desire to maintain independence and remain in control. Palliative care nurses experienced both effective and ineffective interpersonal communication, the building of therapeutic relationships with dying patients and attempting to control patients' pain and distressing symptoms. Patients and nurses agreed that the two most important characteristics of an expert palliative nurse were interpersonal skills and qualities such as kindness, warmth, compassion and genuineness. CONCLUSION: Although the study was conducted in the United Kingdom, the findings have relevance for palliative care practice globally in terms of dependence, issues of patient choice, nurses being interpersonally skilled and building therapeutic relationships with patients.     

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.     

Enhancing emotional well-being through self-care: the experiences of community health nurses in Australia

This article discusses the importance of self-care in enhancing the emotional well-being of generalist community nurses providing palliative care. This research undertaken in Australia explored the relationship between emotional well-being and professional practice. The results demonstrated the importance of self-care, aspects of palliative care that impacted on nurses' well-being, and strategies utilized by nurses to care holistically for themselves to continue providing holistic palliative care.     

Palliative care for all? A review of the evidence in community hospitals

The provision of palliative care in the UK has traditionally focused on people with cancer. People who are elderly, live in rural areas or have diagnoses other than cancer often have difficulty accessing palliative care services. Community hospitals could be important for those groups currently under-served. A literature review was conducted to determine the role played by community hospitals in the provision of palliative care in the U.K. Papers were identified using a keyword search of six electronic databases and hand search of five journals. Fifteen papers were identified according to inclusion and exclusion criteria. Findings indicate that many community hospitals in the UK already have the resources to counter inequalities in access to general palliative care. Much of the evidence uses quantitative methods based on small or non-representative samples and retrospective data collection approaches. Insufficient information about the populations involved meant that findings could not be fully interpreted. More prospective research using qualitative methods involving patients, carers and nurses is required to fully understand the complexities of providing palliative care in this setting.     

Palliative care nursing in rural and urban community settings: a comparative analysis

Nurses have key roles in the coordination and delivery of community-based palliative care. The purpose of this study was to examine the differences between rural and urban community nurses' delivery of palliative care services. A survey was distributed to 277 nurses employed by a community agency in Ontario, Canada, and a 60% response rate was obtained. Nurses reported spending 27% of their time providing palliative care. Rural and urban nurses had similar roles in palliative care but rural nurses spent more time travelling and were more confident in their ability to provide palliative care. Both groups of nurses reported moderate job satisfaction and moderate satisfaction with the level of interdisciplinary collaboration in their practice. Several barriers to and facilitators of optimal palliative care provision were identified. The study results provide information about the needs of nurses that practise in these settings and may provide a basis for the development of strategies to address these needs.     

A follow-up study of professionals' perspectives on the development of family health nursing in Scotland: a questionnaire survey

BACKGROUND: In 1998 the World Health Organisation Europe introduced the Family Health Nurse concept. The envisaged role of this community-based nurse was seen as multi-faceted and included helping individuals, families and communities to cope with illness and improve their health. During 2000-2002 Scotland led enactment of the concept through education and practice, and the first research study evaluating its operation and impact in remote and rural areas was published in 2003. OBJECTIVE: This study's purpose was to follow up health care professionals' perspectives on the development of family health nursing in remote and rural areas of Scotland since 2002. METHODS: The main research method used was questionnaire survey of all the established family health nurses in these areas and all other health and social care professionals with whom they had regular work-related contact. Where novel contexts or practice patterns emerged, further investigation was undertaken through telephone interviews. FINDINGS: Twenty-three family health nurses (88%) and 88 of their colleagues (52%) returned questionnaires. Eight family health nurses were interviewed. The dominant theme within the findings was the gradual, positive development of a role which tended to maintain established community nursing service provision, yet also supplement this with a limited expansion of family health services and public health activities. The flexibility and wide scope of the FHN role in terms of providing generalist community health nursing services was clearly evident. However, capacity to engage with whole families was found to vary widely in practice. CONCLUSIONS: Within remote and rural Scotland family health nursing is gradually consolidating and developing, but its particular aspiration to engage with whole families is often difficult to enact and is not a priority within mainstream UK primary care policy, planning or provision.     

The Community Client Need Classification System - a dependency system for community nurses

AIM: The aim of this paper was to discuss the predictive validity and reliability of the Community Client Need Classification System (CCNCS), the results of using this tool and public health nurses' satisfaction with the system. BACKGROUND: Public health nurses provide the majority of community nursing services in Ireland. The traditional method of measuring workload in the community is based on recording the number of visits. The revised Easley-Storfjell instrument for Caseload/Workload Analysis was modified for the Irish context and permission from the authors was sought to use it in this study and was thus named the CCNCS. METHODS: A convenience sample of 29 public health nurses used the CCNCS to classify 1352 clients for 2 weeks. RESULTS: The elderly and child health groups accounted for the majority of the nurses' direct and indirect time. Predictive validity analysis demonstrated a positive relationship between needs level and nursing time. Nurses reported that the CCNCS was useful in predicting the needs of new and existing clients. CONCLUSIONS: This classification system, albeit in the first draft of its revised form, was perceived by the chosen sample of public health nurses as useful in measuring their workload. Further research is required to ascertain the reliability of the modified classification system with a larger sample size.     

Implementation and impact of the Gold Standards Framework in community palliative care: a qualitative study of three primary care trusts

The Gold Standards Framework (GSF) has been widely adopted within UK general practices, yet there is little understanding of its impact on the provision of community palliative care services. This study presents data on the anticipation and adoption of the GSF within three Primary Care Trusts in North West England. Forty-seven interviews were conducted with generalist and specialist palliative and primary care professionals. Important aspects of the GSF identified were the patient register, communication and out-of-hours protocols. Positive benefits to professionals included improved communication between professionals and appropriate anticipatory prescribing. Negative aspects included increased nursing workload and the possibility of fewer or later visits for patients. Many respondents believed that the GSF needed local champions to be sustainable. Slow or incomplete adoption was reported. The GSF was recognised as important because it facilitated changes to previously difficult aspects of work between professionals, but few respondents reported direct benefits to patient care.     

Differences in understanding of specialist palliative care amongst service providers and commissioners in South London

This paper describes a study that sought to identify service providers' and commissioners' understanding of specialist palliative care within the context of changing service provision in one area of South London. Using a formative evaluation framework, we examined the views of 44 providers and commissioners from statutory and voluntary health and social care services about their understanding of specialist palliative care services and, in particular, the remit of current service provision delivered by a Marie Curie Centre. Face-to-face audiotaped semi-structured interviews were conducted. A qualitative thematic analysis highlighted a number of issues including a lack of consensus about definitions of palliative care, ambivalence about referral procedures, and a lack of role clarity between specialist and generalist palliative care providers. The study took place within the real world context of changing services and economic pressures. This raises methodological issues about how services are evaluated and what terminology is used to describe end-of-life care. The study findings confirm that confusion about terminology and referral criteria remain major issues for clinical workers and organizations seeking to access services.     

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.