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.     

Palliative care in the community for children with cancer in South East England.

In-depth interviews and discussions were held with 40 different professionals in South East England involved in managing palliative care for children with cancer in the community. Participants included paediatric oncologists and outreach nurse specialists in tertiary centres, paediatricians in shared care units, children's community nurses, general practitioners, social workers and child psychologists. The research examined palliative care services available in the region, exploring attitudes to both current provision and possible service improvements. Providing palliative care in the community involves multi-agency collaboration and the study highlighted a range of different approaches to case management with the diversity of resources available. Key improvements proposed by health-care professionals included: better communication and liaison between all the professionals involved; clearer allocation of roles and responsibilities; 24-hour availability of specialist advice on palliative care for children with cancer; faster access to social work and psychology services at the community level; continuity of nursing and respite care. The provision of specialist local palliative care services for children with cancer was generally rejected. The participants favoured improving community palliative care for all children with life-limiting or life-threatening conditions with community nursing teams providing continuity of care and outreach nurses providing specialist advice and support.     

Time expenditure in patient-related care provided by specialist palliative care nurses in a community hospice service

Although the importance of specialist palliative care in home care programmes for terminally ill patients is well known, German community hospice services did not begin to employ nurses who had specialized in palliative care until the early 1990s. The general tasks of these nurses are sufficiently well defined, but no comprehensive data of their daily workload are available in Germany to date. The present article examines time expenditure in direct patient-related care at the community-based hospice service in Mainz, Germany, by analysing time registration sheets concerning 351 patients who received care from January 2000 until December 2002. Fifty-five per cent of care time spent on each individual patient was in direct contact with that patient and/or his or her relatives, 20% of the time was spent on networking and other related tasks, 17% on travelling and 8% on bereavement counselling. Activities in direct patient contact were allotted to pain and symptom control (36.4%) and psychosocial support of the patient (32.4%) or his or her relatives (27.1%), whereas nursing issues played a minor role (4%).     

Caring for children and families in the community: experiences of Irish palliative care clinical nurse specialists

An increasing number of children require care at home owing to life-limiting illness. In addition, there is growing recognition of the specific care needs of such children and their families, and it is anticipated that recent developments in children's palliative care will result in more people accessing these services. In the Republic of Ireland (ROI), community palliative care clinical nurse specialists (CNSs), who are not registered children's nurses, contribute significantly to the support of these children and families. This study aimed to obtain a picture of the current nursing service that would help to determine whether the needs of these patients are being met. Seven community palliative care CNSs from across one health region in the ROI participated in a focus group. Four key themes emerged: gaining access to the child and family, role complexities, pressures of caring, and support strategies. Provision of community children's palliative care by the CNS is complex. The participants demonstrated their commitment to consult, coordinate, negotiate, and ultimately deliver the care required by children and families, but against a background of issues relating to accessing the patient and family, the complexity of the CNS role, and the pressures that such work incurs.     

Transition experiences of qualified nurses moving into hospice nursing

BACKGROUND: Over a short period of time a number of nurses had joined the staff at a hospice. Many of these nurses were palliative care novices, and thus their transition into hospice nursing constituted a move both to a new workplace and a new clinical specialism. AIM: The aim of the study was to gain a deeper understanding of the experiences of qualified nurses making the transition into hospice nursing in order to support future nurses in this transition. METHOD: A constructivist approach was used; data were collected through semi-structured interviews with four new nurses, three mentors and four team leaders. Data were analysed using a constant comparative method. FINDINGS: Five major themes were identified: expectations, personal and professional development, professional respect, mentorship and support. Nurses came to the hospice with individual expectations, some of which were realized. All identified areas of personal and professional development. Whilst it was acknowledged that new nurses brought transferable skills, there was consensus that they needed to develop palliative care knowledge and skills. Professional respect was demonstrated by the degree of acceptance or questioning of new nurses by established staff. New nurses experienced a variety of emotional responses to hospice nursing. Mentorship enhanced the transition experience and strong support was also gained from each other. CONCLUSIONS: New nurses need individual support during their transition into hospice nursing in response to their own expectations, experiences and learning needs. Mentors need preparation and support in their role in order to maximize their positive influence on transitions.     

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.     

End-of-life Nursing Education Consortium (ELNEC) Training Program: improving palliative care in critical care

The integration of palliative care in critical care settings is essential to improve care of the dying, and critical care nurses are leaders in these efforts. However, lack of education in providing end-of-life (EOL) care is an obstacle to nurses and other healthcare professionals as they strive to deliver palliative care. Education regarding pain and symptom management, communication strategies, care at the end of life, ethics, and other aspects of palliative care are urgently needed. Efforts to increase EOL care education in most undergraduate and graduate nursing curricula are beginning; yet, most critical care nurses have not received formal training in palliative care. Moreover, educational resources such as critical care nursing textbooks often contain inadequate information on palliative care. The ELNEC-Critical Care program provides a comprehensive curriculum that concentrates on the requirements of those nurses who are working in areas of critical care. Extensive support materials include CD-ROM, binder, Web sites, newsletters, textbooks, and other supplemental items. The ultimate goal is to improve EOL care for patients in all critical care settings and enhance the experience of family members witnessing the dying process of their loved ones.     

基于信息化平台网格化居家护理服务模式的构建及应用

目的基于信息化平台网格化管理构建居家护理服务新模式,以期有效解决居家康复群体医疗护理需求。方法2018年11月浙江省台州市成立居家护理服务中心和居家康复护理技能培训中心,建立网格化居家护理服务模式,落实优质护理资源下沉,让社区护士成为居家护理主力军;2019年11月建立居家护理服务信息平台,打造线上、线下一体化居家护理分级管理体系,通过信息共享,分级派单,保障居家护理服务高质、便利、安全。记录2020年1-5月网格化居家护理服务开展情况和患者满意度,评价实施效果。采用χ²检验进行统计分析。结果台州市共28所二级以上医院、123个基层医疗机构、1171名社区护士入驻居家护理信息平台。2020年1-5月护理人员共提供居家护理5274例次,其中上门护理4472例次,线上护理802例次;上门护理患者满意度为98.73%(4415/4472),线上护理患者满意度为98.25%(788/802),两种服务类型满意度比较差异无统计学意义(χ²=1.136,P=0.286)。无投诉、不良事件及护士安全问题发生。结论基于信息化平台的网格化居家护理服务模式可以充分发挥社区护士作用,拓宽居家护理服务范围,合理进行医疗资源配置,为居家康复群体解决医疗护理问题,有效推进分级诊疗。     

Exploring nursing outcomes for patients with advanced cancer following intervention by Macmillan specialist palliative care nurses

BACKGROUND: Little information exists about the outcomes from nursing interventions, and few studies report new approaches to evaluating the complex web of effects that may result from specialist nursing care. AIMS: The aim of this study was to explore nursing outcomes for patients with advanced cancer that may be identified as resulting from the care of a Macmillan specialist palliative care nurse. METHODS/INSTRUMENTS: Seventy-six patients referred to 12 United Kingdom Macmillan specialist palliative care nursing services participated in a longitudinal study of their care over 28 days. Patients were interviewed and completed the European Organization for Research on Treatment of Cancer Quality of Life Scale and the Palliative Care Outcomes Scale at referral, and 3, 7 and 28 days following referral to a Macmillan specialist palliative care nursing service. A nominated carer was interviewed at baseline and 28 days. Notes recorded by Macmillan specialist palliative care nurses in relation to each patient case were analysed. FINDINGS: Significant improvements in emotional (P = 0.03) and cognitive functioning (P = 0.03) were identified in changes in patients' European Organization for Research on Treatment of Cancer Quality of Life Scale scores, and in Palliative Care Outcomes Scale patient anxiety scores (P = 0.003), from baseline to day 7. Analysis of case study data indicated that overall positive outcomes of care from Macmillan specialist palliative care nursing intervention were achieved in 42 (55%) cases. STUDY LIMITATIONS: Sample attrition due to patients' deteriorating condition limited the value of data from the quality of life measures. The method developed for evaluating nursing outcomes using data from patient and carer interviews and nursing records was limited by a lack of focus on outcomes of care in these data sources. CONCLUSIONS: A method was developed for evaluating outcomes of nursing care in complex situations such as care of people who are dying. Positive outcomes of care for patients that were directly attributable to the care provided by Macmillan specialist palliative care nurses were found for the majority of patients. For a small number of patients, negative outcomes of care were identified.     

Referrals to the Marie Curie nursing service in North Yorkshire

District and Marie Curie nurses participated in a small-scale study to describe referrals to a Marie Curie service in one English health district over a 3-month period. The number of new patients referred was small; they were geographically clustered and had widely differing life expectancies. Anecdotal reports of difficulties with the 'Nurselink' referral system were not confirmed, and in situations where the system was in operation, Marie Curie nurses were more likely to speak directly to the referring nurse. The most frequently cited reason for referral was general nursing needs; however, Marie Curie nurses felt that they were most often involved to provide family support. These findings suggest that there may not be a shared understanding of the Marie Curie nurse's role, and that equity in community palliative nursing care merits examination. Defining and publicizing the role of the Marie Curie nurse, providing guidance for referrals and prioritizing communication between professionals are proposed not only to enhance the service locally but to ensure that the service is available to all. This article illustrates the value of research to identify ways to improve service delivery.     

Macmillan nurse facilitators for palliative care: evaluation of a pilot project

AIM: to describe and evaluate the implementation of two Macmillan nurse facilitator posts. METHOD: a case study design was adopted with data collection in two main phases. A range of data collection techniques were used, including interview, questionnaire and observation. Various sampling strategies were adopted for the different data collection methods. The use of multiple sources of data supported the triangulation of evidence in order to increase the strength and rigour of the analysis. FINDINGS: two Macmillan nurse facilitator posts were set up with the overall aims of enhancing the quality of palliative care to patients in the community by mobilising the existing skills and supporting the development of new competencies by community nurses. The Macmillan nurse facilitators have been active in three areas directly linked to community nurses' clinical practice: educational programmes, establishment of a palliative resource nurse network and support of clinical guidelines in nursing and primary care teams. The model of peer facilitation whereby the Macmillan nurse facilitators continue to work as district nurses for part of the week has been highly valued by community nurses. CONCLUSIONS: the single most important factor identified in facilitating successful implementation of these posts has been the 'dual role' nature of the posts. This has been key to acceptance of the posts by a generic workforce. The posts provide an effective model for supporting and enhancing the palliative clinical skills and knowledge of generic community-based staff.     

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.     

"I'm a different kind of nurse": advice from nurses in rural and remote Canada

The sustainability of the rural and remote nursing workforce in Canada is increasingly at issue as the country becomes more urbanized and the nursing workforce ages. In order to support the retention of nurses in rural and remote communities and the recruitment of nurses to these communities, we require a better understanding of what is important to rural and remote nurses themselves. As part of the in-depth interviews conducted within The Nature of Nursing Practice in Rural and Remote Canada, a national research project, registered nurses (RNs) were asked what advice they would have for new nurses, educators, administrators and policy makers. This is the first of two papers describing that advice. It focuses on RNs in acute care, long-term care, home care, community health/public health and primary care roles in rural and remote communities across the country. The RNs were generous with their advice and gave many rich examples. While they were enthusiastic about their nursing practice and encouraging of other nurses to work in rural settings, they were intent that improvements be made in several key areas: education available to new practitioners and themselves, working conditions for rural and remote nurses, leadership, organizational supports and policies that better support rural and remote practice and communities.     

Nurses' willingness and the predictors of willingness to provide palliative care in rural communities of taiwan

The aims of this study are to identify the willingness of district nurses to provide palliative care in the rural communities in Taiwan and determine the predictors of this willingness. A questionnaire was sent to all 1,121 community nurses of the 174 government health stations assigned to all the rural areas of Taiwan. The overall response rate was 86.4%, with 940 valid questionnaires retrieved. The majority of respondents (93.0%) expressed a willingness to provide palliative care if they encountered a terminal cancer patient. However, they would limit their services to consultation and referral (91.6% and 87.3%), and were less likely to provide home visiting (51.0%) or bereavement support of family (38.4%). With regard to knowledge, the accurate answers to the philosophy/principles and clinical practice of palliative care were 88.5% and 43%, respectively. The results of stepwise logistic regression analysis showed that "palliative care knowledge," "the belief in external control by authority," and "the belief in external control by chance" were the most significant variables related to the willingness of district nurses to provide palliative care (OR=12.83, 95% CI=2.46-66.76, P<0.01; OR=2.11, 95% CI=1.32-3.35, P<0.01; OR=0.54, 95% CI=0.31-0.95, P<0.05, respectively). However, regarding the content of services, the willingness to provide home visiting was affected positively by the level of information resources, subjective norms, and the belief in external control by authority. This willingness was negatively affected by age of the patient. These data suggest that effective training courses focused on practical knowledge of palliative care for these district nurses, the incorporation of the palliative care into nursing education, and active health policy administration are critical for the community palliative care movement in Taiwan.     

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.     

Factors related to the use of community nursing services in The Netherlands

This study aims to identify factors important in explaining the nature of community nursing care received by patients in their homes because little is known about the relation between individual characteristics of patients receiving nursing care and the nature of care delivered by community nurses. During a period of 2 weeks a representative sample of 137 community nurses and 49 community nurses' auxiliaries at 47 different locations paid a total number of 12,847 home visits to provide care to 3,315 patients. For each home visit, patient's characteristics, the nature of care delivered by the nurse and the length of the home visit was recorded. The results suggested that three groups of patients could be identified in terms of the nature of nursing care received at home. First, patients who were older, who were also receiving informal care and did not suffer from psychosocial problems, were most likely to receive assistance in their activities of daily living. Second, patients suffering from multiple disorders, whose situation was assessed as unstable, and those who did not suffer from psychosocial problems were most likely to receive technical nursing care. These patients were visited most often. Finally, male patients suffering from multiple disorders, whose situation was assessed as unstable, especially when new mental or social problems emerged, were most likely to receive psychosocial support and education from the community nurse. These visits appeared to be the most time-consuming.