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.     

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.     

District nurses’ role in palliative care provision: A realist review

Objectives

The aim of this review is to construct a detailed account of the role of the district nurse (generalist registered nurse providing nursing care in primarily home settings) in providing palliative care, to determine if and how district nursing care provides effective care to such patients at home, and to examine the utility of a realist review for the above purpose.

Design

Realist review of literature.

Data sources

Papers in English reporting aspects of the district nurse role in the provision of palliative care are included. Electronic databases (Ovid Medline, Cinnahl, British Nursing Index, Embase, PsycINFO and EBM reviews) were searched, supplemented by citation tracking and grey literature searches.

Review methods

Assumptions about district nursing practice with palliative care patients are derived from a range of sources. Reviewed papers are interrogated to support, refute or develop these statements.

Results

Forty six papers employing a range of research methods are incorporated into the review. Studies focus on district nurses, patients, family carers and other professionals and include work from a range of countries. Studies highlight the value district nurses place on palliative care provision, the importance of developing a relationship with patients, and the emotional difficulties of providing such care. District nurses have key skills in providing physical care and in coordinating the work of others, but struggle more with psychological aspects of care. District nurses report feeling undervalued, and express some reluctance to work with other health and social care professionals to provide care.

Conclusions

There is little in this synthesis to shed light on the outcomes of care or to explicitly guide practice. District nurses clearly articulate what they consider to be important, but research in this area is limited and needs to undergo a renaissance to examine what is important: namely what district nurses do in practice; what patients and family carers views are on what they do and do not do; and how district nurses can improve care outcomes. The inclusiveness of realist review works well for this field of study.     

Caring in nursing: investigating the meaning of caring from the perspective of cancer patients in Beijing, China

Aims. The aims of the study were to develop an understanding of caring in nursing from the perspective of cancer patients and attempt to identify the concept of caring in the Chinese cultural context. Background. Caring as a concept remains elusive, the acceptable definitions of the term care have not been reached. The expressions, processes and patterns of caring vary among cultures, but there is a lack of Chinese culture‐based study about caring in nursing. Methods. A qualitative research design was used and 20 cancer patients were interviewed using a semi‐structured interview guide. A qualitative content analysis was used to identify themes in the data. Results. Three themes emerged from the data, which suggested that caring is delivering care in an holistic way: nurses’ caring attitudes and their professional responsibility for providing emotional support, nurses’ professional knowledge and their professional responsibility for providing informational support and nurses’ professional skills and their professional responsibility for providing practical support. The caring behaviour of nurses as perceived by cancer patients involved the provision of emotional, informational, and practical support and help based on patients’ needs. A model of caring in nursing was formulated. Conclusions. Caring in nursing as perceived by cancer patients involves nurses having qualified professional knowledge, attitudes and skills in oncology and providing the informational, emotional and practical supports and help required by cancer patients. Relevance to clinical practice. Caring is manifested in nursing actions through nurse–patient communication process. Patients have their inner expectation for nurses’ caring behaviour and attitudes and nurses’ performance of caring or uncaring behaviour has a direct influence on the feelings of patients. It is necessary for all nurses to continue improving their oncology professional knowledge, attitudes and skills as well as their abilities of offering informational, emotional and practical support and help for their cancer patients.     

Nurses’ perceptions of dealing with death in the emergency department

BackgroundProviding end-of-life care to patients and their families in the emergency department (ED) is challenging, with high workloads, the busy environment, and a focus on providing lifesaving treatments to patients at odds with providing end-of-life and palliative care.AimThe purpose of this study was to investigate nurses’ experiences of providing end-of-life care in EDs, including their perceptions of the most vital elements of care, ability to provide aspects of care, as well as perceptions of their role, communication processes, family presence/involvement, and the ED environment.MethodsNurses (n = 211) working in Australian EDs for at least 12 months completed an anonymous online survey.FindingsNurses identified vital elements of care for dying patients including adequate pain control and a move away from burdensome treatments, sensitive care of families and family access to loved ones, and a quiet environment. However, nurses were not always able to provide such care to their patients. Often, the ED was seen as an unsuitable place for end-of-life care or care of families once the patient had died, and communication between staff and between staff and families was challenging.DiscussionThe ED physical environment, lack of staff training and debriefing, and lack of time to communicate with family, particularly after death, may compromise nurses’ ability to provide end-of-life care that is satisfying to them, their patients, and families.ConclusionThere is a need for focus on the ED physical environment, staff training, and consideration of the emotional experiences of frontline nurses caring for patients at the end of life.     

La experiencia emocional de enfermeras de la Unidad de Hospitalización a Domicilio en cuidados paliativos: un estudio cualitativo exploratorio

ObjectiveTo explore the emotions experienced by the nurses of a Home Hospitalization Unit as a result of their work role.MethodA qualitative exploratory study was carried out with a phenomenology approach to explore people's experiences and inner-life experiences. The participants were 9 nurses working in the home hospitalization unit. An analysis of qualitative content was undertaken. Units of meaning were grouped into 13 codes that, in turn, were classified into 4 categories, emotional dimension, beneficial and distressing aspects, daily working life and personal life.ResultsNursing professionals working in palliative care suffer continuous exposure to traumatic situations, although they also report feeling satisfactory emotions that compensate for moments of distress. Having resources such as training in self-care and emotional regulation, as well as social support seems to be key to providing quality care and avoiding the onset of compassion fatigue.ConclusionsMaintaining psychosocial well-being in the workplace is crucial for palliative care nurses to be able to undertake their work in the best possible way.     

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.     

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.     

Community palliative care nurse experiences and perceptions of follow-up bereavement support visits to carers

Community (district) nurses (CNs) are well positioned to provide follow‐up home visits to bereaved families and carers of their recently deceased palliative clients. An Australian survey of CN's (n = 58, response rate 29%) described their experiences of bereavement support visits, perceptions of their role in bereavement care and their professional support needs. Although positive experiences were commonly reported, with 95% of participants considering bereavement follow‐up visits as consistent with their role, 53% found the visits difficult for reasons such as the nurse or client not understanding the purpose, the CN‘s excessive personal identification with the client's situation, the emotional intensity of visits, and lack of confidence or skills despite prior training. The nature and quality of the CN‘s prior relationship with the bereaved family was an important determinant of the visits’ success. Results highlight the value of bereavement support visits, while identifying professional development needs. Managing emotionally intense episodes should receive priority in preparing CN's for this challenging role.     

Nursing work in Jordan: an example of nursing work in the Middle East

Aim. The study aimed to investigate Jordanian nurses’ perceptions of their role in clinical practice. Background. The lack of regulation of nursing practice by the profession across the Middle East until now has led to each institution setting its own policies regarding the role of the nurse and the practice of nursing. No study to date has examined the role of the nurse working in the acute hospital environment nor explored the practice of nursing in this region. Design and methods. A cross‐sectional questionnaire survey was conducted using a quota sample. A total of 348 medical‐surgical staff nurses and practical nurses from the three healthcare sectors in Jordan participated in the study with a response rate of 77%. The results were analysed by constructing multiple response tables, chi‐square test, anova and log‐linear analysis. Results. Staff nurses in Jordan were expected to carry out the majority of nursing care activities. The role of the practical nurse was limited to the physical and professional domains of nursing care. Activities requiring higher levels of emotional or intellectual labour and interdisciplinary communication were attributed only to the staff nurse. The majority of the respondents reported nursing had not been their first choice of career. Male nurses had a higher intention to leave the nursing profession. The predominant method of care delivery used by nurses was task‐oriented. Conclusion. There was a general consensus regarding what constituted the nurse's work in the clinical area across the three healthcare sectors in Jordan. Role delineation between the two levels of nurses was also clear. There is a need to move from task‐oriented to patient‐centred care to promote quality patient care. Relevance to clinical practice. This study explores the role of the nurse working in the acute hospital environment in Jordan.     

The experiences of Chinese family members of terminally ill patients - a qualitative study

Aim. To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. Background. Palliative care aims to provide care to dying patients and their family members. Skillful interventions are necessary to help family members cope with the impending death of the patient and maintain their emotional equilibrium. Hence, it is important to understand the experiences of family members of palliative care. Design. A phenomenological study was conducted. Data were collected by semi‐structured interviews. We interviewed a purposive sample of 20 family members of terminally ill patients in a palliative care unit in Hong Kong. The data were analysed following Colaizzi's phenomenological methodology. Results. Family members experienced anticipatory grief, with reactions that included anger, unease, sadness and helplessness. This was particularly acute when the patient was first admitted to the palliative care unit. However, the family members quickly accepted the reality and committed themselves to the care of the patient, seeking informational and emotional support from the nurses. The families wanted to be assured that the patient had been offered good care and suffered no pain. It was considered important to be with the patient during the dying process. Conclusion. This study demonstrated that Chinese family members were committed to the care of the patients in the palliative care unit. Cultural beliefs played a part in influencing family emotions and concerns. Relevance to clinical practice. This study offers a direction for family interventions that acknowledge the reactions of family members to the admission of a patient to a palliative care unit. It highlights that families need active informational and emotional support from nurses.     

The use of neonatal palliative care: Reducing moral distress in NICU nurses

The ethical dilemmas faced by nursing professionals can lead to moral distress and the abandonment of nursing as a career. This is especially true in intensive care nursing where mortality is more prevalent. Neonatal nurses face a particularly high rate of moral distress when dealing with the treatment and loss of critical infants. This distress is compounded when nurses feel that the care they are providing is not in the best interest of the infant. Providing palliative care at the end-of-life may alleviate some of this distress, but only if palliative care is implemented consistently and effectively. Several barriers exist to implementing effective palliative care. The primary barrier is the lack of education of neonatal staff in the correct definition and application of end-of-life comfort care. This includes education in communication, assessment of needs, and implementation. A neonatal-specific palliative care team (or individual palliative care nurse) can fill this gap in education to accommodate effective care. A consistent, effective neonatal palliative care program is essential. Such a program affords the opportunity for compassionate communication with the family, a decrease in moral distress for nurses, and the provision of quality end-of-life care for the neonate.     

Making the move: from bedside to camera-side

The tele-intensive care unit (tele-ICU) uses sophisticated telemedicine technology and a remote team of critical care experts, including nurses, to provide continuous monitoring, assessment, and interventional services to a large number of patients across multiple ICUs. This new practice environment offers experienced critical care nurses an opportunity for career and knowledge expansion while reducing some of the physical and emotional risks encountered at the bedside. The role of the tele-ICU is still evolving but focuses on 4 areas of responsibility: performing virtual rounds, managing patient alerts, providing ICU support, and coaching or providing teaching moments. The transition from the bedside into the tele-ICU role can be complex as tele-ICU nurses encounter ICU acceptance barriers and a lack of or a change in professional identity. A formal orientation program focused on competency is necessary for the successful transition from bedside nurse to tele-ICU nurse.     

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.     

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.