bluuebunny/crossref_metadata_2025 huggingface dataset:
Assessment and documentation of pain in oncology patients
Authors: Livneh J , Garber A , Shaevich E
Published: May 2014

The lack of appropriate pain treatment remains a major problem for cancer sufferers. Experts believe that there are various reasons for this, which include inaccurate pain assessment, general non-prescription of opioids or prescription of incorrect opioid dosages and an absence of documentation on pain and pain treatment. This article reports on the findings of a research study, which was undertaken to identify the problematic areas in the assessment and documentation of pain suffered by oncology patients undergoing treatment in various medical units. A telephone survey was conducted in order to examine the pain treatment procedure, and the nursing and medical records of 37 oncology patients who were receiving pain-relieving medication. The survey found that a systematic pain assessment was made in only some of the oncology units and also that there was no pain assessment in the internal and surgical wards. None of the units participating in the survey conducted systematic documentation or follow-up of the patients’ pain or its treatment. In order to adequately treat a patient’s pain his/her pain must be accurately assessed, subsequently followed up and regular documentation of pain and its treatment must be introduced. The study revealed that no procedures had been established to adequately deal with the management of pain and therefore the authors recommend that a pain assessment and documentation policy should be adopted in the care and treatment of all oncology patients.
Ways of knowing in palliative nursing
Authors: Kennedy Catriona
Published: May 2014

Interest in what constitutes the essence of nursing knowledge has developed steadily in the UK since the 1960s stimulated by the growth in undergraduate and postgraduate programmes of education and in nursing research. These developments have drawn widely upon the knowledge and research methods of the physical sciences, social science, arts and humanities. Interesting debate about the existence and nature of nursing knowledge is now occurring. The increasing emphasis on evidence-based practice raises important questions about the knowledge required by nurses working in palliative care. This article explores different ways of knowing in relation to nursing and suggests that nurses working in the field of palliative care require knowledge that encompasses both ‘knowing that’ scientific knowledge and ‘knowing how’ which may be regarded as personal, experiential knowledge. It is argued that the nature of the knowledge and the evidence base of palliative nursing is relatively unexplored. Exploration of the knowledge relating to palliative nursing practice requires sophisticated and systematic research approaches.
Issues of suffering in palliative care
Authors: Urquhart Patricia
Published: May 2014

Nurses working in palliative care are confronted with the suffering of patients and their relatives on a daily basis. Nurses, as practitioners of holistic care for the terminally ill, are aware of the need to care for ‘the family, the mind, and the spirit as well as the body’ (Saunders, 1965). This article explores various beliefs about the meaning of suffering. The consequences of terminal disease can result in varying degrees of suffering for patients within the palliative care setting. Suffering can present a major problem for patients whose time is limited and nurses are frequently faced with the difficult task of helping patients come to terms with their inner turmoil. Although all suffering is subjective and difficult to quantify, the nurse can have a positive effect on alleviating suffering in terminally ill patients.
Perceptions of GPs and DNs on the role of hospice home-care nurses
Authors: McKenna Hugh , Keeney Sinead , Nevin Lorna
Published: May 2014

The purpose of this study was to explore the perceptions of general practitioners (GPs) (n=305) and district nurses (DNs) (n=101) on the service provided by hospice home-care nurses in an area of Northern Ireland. The study objectives were to assess GPs’ and DNs’ levels of awareness of this service and their referral patterns to the service. Other objectives related to the perceptions of GPs and DNs in terms of the usefulness of the service, the level of communication and collaboration offered within the service and the role of hospice home care nurses. GPs were specifically asked for their views on the value of the service within the current commissioner-provider framework. Semi-structured postal questionnaires were employed to address these objectives. Results showed that perceptions varied between GPs and DNs, and indicated a need to extend the role of hospice home-care nurses, especially in relation to training in counselling and better communication following referral. Collaborative teamwork and education were also identified as areas for further research.
Withholding or withdrawing treatment
Authors: Farsides Bobbie
Published: May 2014

In 1999 the British Medical Association (BMA) published guidance on withholding and withdrawing life-prolonging medical treatment (BMA, 1999). Over 2000 people responded to the preceding consultation exercise, and the resulting document was long-awaited by many health professionals. This is a rich and sophisticated document which deserves closer attention than can be given here, the current purpose being to explore the spirit rather than the detail of the guidance.
An inquiry into the concepts of spirituality and spiritual care
Authors: White Gillian
Published: May 2014

The requirement of healthcare professionals to consider the whole person, including spirituality, is hampered by a lack of clarity about the nature of spirituality and spiritual care. A multidisciplinary cooperative inquiry group met during 1997 and 1998 to explore this issue. The aim of the group was to ‘explore spirituality with a view to how that informs our work’. Group members understood spirituality to be a unique potential which forms an integral part of every human being. Key themes through which spirituality may be expressed are the search for meaning or purpose and a sense of connection. Outcomes of the inquiry included personal and professional development, increased recognition of spirituality and further training opportunities for other staff.
District nurses’ needs: palliative care for people with learning disabilties
Authors: Lindop Edward , Read Sue
Published: May 2014

The aim of this article is to identify national palliative care issues, and current palliative care services provided by district nurses for people with a learning disability in North Staffordshire, UK. The professional and educational needs of district nurses in the role of palliative care providers for people with a learning disability were identified by two small focus groups involving district nurses. This resulted in the formulation of a questionnaire, which was circulated to 165 district nurses. While the initial part of the research is qualitative, the final survey involved a quantitative analysis using a questionnaire and a three-point Likert scale. This compared a number of independent variables such as age range, length of experience and number of contacts with clients who have a learning disability and palliative care needs. The results provide an overview of existing service uptake and a profile of the professional and educational needs of district nurses when caring for people with a learning disability who also have palliative care needs.
Palliative care in non-malignant disease: a pragmatic response
Authors: Wallwork Louise
Published: May 2014

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.
An audit of subcutaneous syringe drivers in a non-specialist hospital
Authors: Dunne Kathleen , Sullivan Kate , Garvey Angela , Kernohan George , Diamond Angela , Duffy Celine , Hutchinson Joan
Published: May 2014

The use of syringe drivers as a method of drug delivery to control symptoms in palliative care is a common and accepted practice, but one which has evolved rather than been subject to close multiprofessional scrutiny and guideline formation. There is evidence that adverse incidents may arise as a result of syringe driver use (Medical Devices Agency (MDA), 1998), for example, errors in drug calculations, drug stability, equipment failure (including disconnection) and the wrong rate of infusion. Inadequate user training, poor servicing of equipment and inadequate documentation and record keeping are all thought to be contributing factors (MDA, 1998). In the hospital where this audit was carried out, syringe drivers are used to administer drugs to patients with cancer during the palliative phase of illness. The purpose of this clinical audit was to establish the standard of current practice in wards where syringe drivers were being used. A retrospective study of 13 cases of syringe driver use is presented. The results highlight many areas of unregulated practice with regard to setting up, monitoring and maintenance of syringe drivers. The choice of drugs and doses prescribed, evaluation of treatment responses and review of treatment regimens were also areas of concern. Guidelines for the use of syringe drivers in non-specialist hospitals are put forward.
A study of the experiences of women living with HIV/AIDS in Uganda
Authors: Withell Bridget
Published: May 2014

This small descriptive study investigated the experiences of Ugandan women living with a diagnosis of human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS), exploring what assisted them to cope and identifying their future concerns. A purposeful sample of seven HIV-positive women was accessed through two indigenous non-governmental organizations in Eastern Uganda. Single semi-structured interviews were conducted on location. Following analysis of the narrative data, three principal aspects of their experiences emerged: loss and adversity, constructive living, and future uncertainties. Loss and adversity encompassed bereavements, multiple psychosocial losses and physical suffering. Constructive living related to the ability to adopt positive living activities, rebuilding shattered lives, sometimes from the brink of despair. Since the participants were all mothers, future concerns focused on child care anxieties. Stress and uncertainty surrounding HIV testing of children was also evident. Despite the cultural contrasts, many of the findings were remarkably similar to those documented in Western literature. The women related their experiences with an absence of self-pity or resentment. Resilience, resourcefulness and hope were typically, perhaps instinctively, demonstrated.
Death in homes: bereavement needs of residents, relatives and staff
Authors: Katz Jeanne , Sidell Moyra , Komaromy Carol
Published: May 2014

This article reports findings from a study in the UK, which investigated the case for applying the principles and practices of palliative care to caring for older people dying in residential and nursing homes. It focuses on the emotional and practical consequences of a death occurring in these settings. It outlines the bereavement needs of residents, relatives and staff as well as obstacles to providing adequate support. Homes differed in policies and practices in relation to providing bereavement support for relatives. Most managers felt some responsibility for relatives of deceased residents, but rarely felt capable of providing what they perceived as appropriate bereavement support. They recognized the need for practical as well as emotional support for staff and other residents after a death but felt that they lacked the skills and time to provide this. Certain types of home prioritized bereavement support, but many homes operated under considerable resource and staffing constraints. Even where support needs were recognized it was often difficult to put the requisite help into operation. This study identified a lack of training in communication skills and in particular little access to training in bereavement care. This area needs to be addressed if residents, relatives and home staff in these settings are to have their bereavement needs met.
Development of a new approach to palliative care documentation
Authors: McEvoy Mel
Published: May 2014

Efficient, comprehensive documentation is a vital element of all healthcare provision. It not only provides a record of care, but should reflect the quality of that care, enable continuity of care between practitioners and reinforce care standards. However, documentation in palliative care often falls short of these ideals. This article describes the formulation of an integrated system of documentation which aims to address the failings of documentation procedures in one hospice/palliative care unit. The resulting system seeks to embody the rationale of palliative care within a dynamic, patient-centred approach to nursing documentation.
Mini-Mental State Questionnaire: problems with its use in palliative care
Authors: Grealish Laurie
Published: May 2014

The Mini-Mental State Questionnaire (MMSQ) has been established as a reliable research instrument and is recommended for the early detection of impaired mental status (Fainsinger et al, 1993). Using reflection on a clinical incident, the problems associated with the clinical application of the MMSQ that may outweigh its usefulness are identified. The patient’s experience of MMSQ as routine cognitive monitoring can be distressing as the person experiences loss of cognitive ability in a visible way. This experience has a negative influence on the person’s quality of life, which is contrary to the essential aim of palliative care. Research evidence suggests that the MMSQ lacks specificity (the ability to detect impaired mental status) because it is affected by pre-morbid ability and intelligence, and therefore cannot be used to assess competence in decision making. Further research on the meaning of losing cognitive ability in terminal illness and other cognitive assessment strategies is required.
Exploring the use of CircAid® legging in the management of lymphoedema
Authors: Lund Eilish
Published: May 2014

Lymphoedema is a potentially disfiguring chronic condition that can have significant physical, psychological and social consequences for the affected individual. Treatment consists of a combination of exercises and massage to increase lymph drainage, and the use of compression hosiery to maintain improvements. This intensive treatment is delivered by trained therapists over several weeks, and is time consuming for both patient and therapist. Maintaining improvements following intensive therapy is difficult, and there is often a need for further courses of intensive therapy. In the maintenance phase of treatment the patient is taught to care for the swollen limb with a routine of skin care, exercise, simple lymphatic drainage and compression hosiery. Compression is the mainstay of this phase of management, but a regular supply of high-compression garments is costly. The CircAid® legging is a non-elastic adjustable compression appliance worn on the lower leg which can be an effective adjunct to compression garments. Three case studies are presented to show that the use of the CircAid® legging in the management of patients following intensive therapy can enhance the effect of standard compression hosiery. Implications for clinical practice are discussed, as is the need for further research.
Food refusal and dysphagia in older people with dementia: ethical and practical issues
Authors: Wasson Katherine , Tate Helen , Hayes Carmel
Published: May 2014

Food refusal poses difficulties for nurses and care staff and can place older patients with dementia at risk of undernutrition. The dangers of and reasons for food refusal in these patients are explored and the fundamental ethical and legal issues raised in caring for these patients are examined. Practical guidance and solutions are offered through dietetics and speech and language therapy with the aim of helping nurses and care staff, as well as professional carers in palliative care, explore ways of critically examining and coping with these dilemmas.
The tyrannies of palliative care
Authors: Aranda Sanchia
Published: May 2014

I have previously argued that palliative care is in danger of suffering from ideological stagnation (Aranda, 1998). By this I meant that the philosophy of palliative care had become so enshrined in rhetoric that practitioners are able to claim that they provide whole person, family-centred and multidisciplinary care, while failing to explore the limits to which this is achieved within the context of contemporary health-care delivery. The words of palliative care philosophy role off the tongue but we rarely challenge what we do. However, in today’s health-care world, and with increasing governmental funding of palliative care services, demands to be accountable for the outcomes of palliative care are growing. The challenge is no longer one of proving the place of palliative care, but rather of demonstrating the effect of our interventions so that they can be taken up more broadly in health care. Some of the forces preventing this I have labelled the tyrannies of palliative care. The word tyranny means oppressive action or behaviour. In this context though it refers to the ways in which our behaviours limit the extent to which palliative care can be self-critical and reflective. The three tyrannies I have identified are not exhaustive but can perhaps begin us on a process of self-critique that will be essential to our continued growth as an integral part of contemporary health care.
Relating palliative care principles to the promotion of undisturbed sleep in a hospice setting
Authors: Gibson Jo , Grealish Laurie
Published: May 2014

Nurses working at night have a specific role in supporting sleep and promoting rest and comfort. Sometimes the role of the night duty nurse in promoting sleep and comfort is taken for granted. One author’s experience of working as a night-duty nurse led to reflection on her responsibilities in improving practice and addressing the sleep-related needs of patients in a palliative care setting. Following a literature review, it was clear that there are very few publications on sleep disturbance in palliative care. Using the four principles of palliative care (Aranda, 1998a), the authors construct a series of strategies to prevent and manage sleep issues.
Palliative care: the experience of informal carers within the Bangladeshi community
Authors: Somerville Jacqueline
Published: May 2014

Optimal palliative care cannot be realized unless nurses have a full understanding of what the patient’s family is experiencing. There is a gap in nursing knowledge related to informal care and ethnic minorities. The aim of this retrospective qualitative exploratory study was to investigate the experiences of Bangladeshi informal carers living in the UK, associated with caring for a dying relative. Semi-structured interviews using an interpreter were carried out and patient notes were examined. Four categories emerged from the data: caring, support, communication, and home and family. In addition to the demands and stresses caused by their relative’s symptoms and the knowledge that they were dying, the Bangladeshi carers experienced communication barriers, isolation and anxieties regarding visas and housing – yet all were uncomplaining about their situation. Palliative care nurses working with Bangladeshi families need to be aware of the additional stresses that these families may experience and be able to offer strategies to enable them to cope with them.
Support needs of brain tumour patients and their carers: the place of a telephone service
Authors: Curren Jean R
Published: May 2014

Although the survival rate for many cancers has improved over the past two decades this has not happened for most patients with a primary malignant brain tumour. Numbers of patients diagnosed with this condition each year are small, and as expertise is often very limited, information, advice, and support can be difficult for patients and carers to access. The role of the appropriately trained nurse in meeting these needs has been well researched and published literature supports the development of such roles. The use of the telephone for providing information and support has become more common in recent years. The Regional Cancer Centre in the west of Scotland covers a wide geographical area and it was considered appropriate to initiate such a service for patients and their carers in that area to provide easier access to specialist knowledge and advice and subsequently improve continuity of care. This article discusses some of the support and informational needs of patients with brain tumours and their carers, which highlight reasons for introducing the telephone service in this cancer centre. The results of a 2-year audit of the service will be also be presented.
Relatives’ views of health care in the last year of life
Authors: Keegan Orla , McGee Hannah , Hogan Morna , Kunin Howard , O’Brien Sharon , O’Siorain Liam
Published: May 2014

This article reports the views of 155 relatives of patients who died during a 12-month period with varying degrees of palliative care service (hospital-based, hospice-based, home care and no palliative care). Although overall care was rated as excellent or good by the majority of interviewees the Critical Incident Technique (Flanagan, 1954) was used to gather examples of good and poor care from relatives’ perspectives. These incidents are recounted here under a framework describing the process of care from access to services through to care at the time of death and aftercare for relatives. The range of incidents reported suggest that relatives consider all aspects of care – technical and interpersonal – as important towards the end of life but particular importance is placed on the attitudinal and dignity-preserving aspects of care. The movement to integrate principles of palliative care into all clinical practice is reinforced by the findings from this study.
Neuro-oncology: a clinical nurse specialist perspective
Authors: Guerrero Douglas
Published: May 2014

Since the introduction of corticosteroids in the 1960s little, if any, progress has been made in the prolongation of survival for patients with high grade glioma. The prognosis for this group of patients remains poor with most surviving for less than 1year. Medical treatment, aimed at controlling disease, often gives rise to major altered body image contributing to an external realization of illness. For example, patients with word-finding difficulties may now find themselves stared at because of hair loss, a consequence of radiotherapy. Those on steroids may become socially isolated as a result of cushingoid features. Partners and families do not have a ‘walk on’ part either; often patients’ physical and cognitive changes have a major impact on their lifestyle.
The development of a palliative care-led memorial service in an acute hospital setting
Authors: Rawlings Debbie , Glynn Tina
Published: May 2014

It is well documented that bereavement is an important function of hospice services. However, little data exists that specifically defines the form that bereavement support for those whose relatives died in a hospital setting should take. This article describes the provision of bereavement support in the form of a memorial service for relatives of palliative care patients in an acute hospital. It describes the background to its development, highlighting the importance of rituals of remembrance, not only for the bereaved but also for the staff involved by creating an opportunity for endings. A survey to elicit information on memorial services provided by hospital palliative care teams elsewhere is discussed, revealing that this service is one of only a few provided. The need to engage multidisciplinary support in the organization and provision of a memorial service is emphasized, as is the need for formal evaluation of such services in order to elicit whether the cultural needs of those attending are being met. Recommendations are put forward for future investigation, which will inform the ongoing development of subsequent bereavement services.
Use of quality-of-life scores in care planning in a hospice setting: a comparative study
Authors: Hill Nita
Published: May 2014

This study examined the concept and measurement of quality of life (QOL) in terminally ill patients. It also addressed how patients’ QOL can be improved within a hospice setting. Measurement of QOL was used in developing patient-care plans and to identify differences in QOL assessment between nurse and patient as an aid to reflective practice. The findings of the study revealed that a better understanding of the patient can be achieved if nurses have access to the patient’S QOL perspective. This better understanding, when translated into meeting patients’ QOL priorities and needs, resulted in clinically significant improvements in their QOL. Reflective practice by nurses was also shown. A second article will discuss how the theme ‘revelation’ emerged from the insights of those involved in the study.
Meeting complex needs: an analysis of Macmillan nurses’ work with patients
Authors: Skilbeck Julie , Seymour Jane
Published: May 2014

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; and 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.
Are we using the users?
Authors: Payne Sheila
Published: May 2014

It has become very fashionable to involve people who use health and social care services to help shape the research that informs service development. Although this is a laudable aim, to what extent are we involving people for their own benefit and to what extent does it merely serve to fulfil the research agenda?
The role of oral transmucosal fentanyl citrate in the management of breakthrough cancer pain
Authors: Rees Elizabeth
Published: May 2014

Breakthrough pain affects at least two-thirds of cancer patients at some point during their illness (Portenoy and Hagen, 1990; di Palma et al, 2000). The ideal preparation for managing breakthrough pain is one that is able to mirror its characteristics, i.e. rapid in onset and relatively short in duration. Oral transmucosal fentanyl citrate (OTFC, Actiq®) is an opioid formulation with a unique delivery system that fulfils these criteria. It has a role to play in the treatment of breakthrough pain for some patients who are receiving opioid treatment for cancer pain. OTFC was preferred over their routine medication by most patients who recently participated in a UK clinical trial (Hanks et al, 2002, unpublished data). This article aims to give an overview of this new and novel preparation developed for the control of breakthrough cancer pain.
The myth of inter-professional learning
Authors: Nyatanga Brian
Published: May 2014

Effective interprofessional learning is seen as worthwhile, judging by documents from the UK’S Department of Health and the government, and initiatives by some universities (I use the term ‘interprofessional’ in line with the World Health Organization and will not be drawn into the semantic differentials of multiprofessional, multidisciplinary, multiagency and all the other ‘multis’). It is argued that the benefits of interprofessional learning are often witnessed in the closer and better interprofessional working in clinical areas and obviously patients are the biggest winners. However, the call for interprofessional learning started as far back as the 1960s, but up to now it has not been as established as it should be. Forman and Nyatanga (1999) outlined a catalogue of policies and legislation since 1962 that seem to confirm that interprofessional learning has become a professional myth supported by rhetorical statements. Carpenter and Hewstone (1996) studied interprofessional learning between doctors and social workers and found that both groups supported the ideals of interprofessional education but felt that lack of resources were a major obstacle. If resources are not the whole truth then what is the real obstacle?
Physical and psychosocial impact of xerostomia in palliative cancer care: a qualitative interview study
Authors: Rydholm Margareta , Strang Peter
Published: May 2014

Xerostomia is often considered to be merely a physical problem. The aim of this study was to explore the global effects of xerostomia, with a specific focus on psychological and social consequences. Semi-structured, tape-recorded interviews were conducted with 16 patients with advanced malignancies and symptomatic xerostomia. A phenomenographic (qualitative) analysis was performed. Four main categories were identified in the study: 1) subjective discomfort, e.g. dryness or burning sensation, 2) loss of function, e.g. articulation or swallowing, 3) increased infection (oral thrush and ulcerations), 4) psychosocial effects, including shame, increased feelings of being a patient rather than a person and a tendency to avoid social contact, resulting in loneliness. Xerostomia and its associated symptoms have a considerable, negative global impact, resulting in shame, anxiety, disappointments and verbal communication difficulties. There should therefore be more focus on the management of xerostomia, which is often neglected in palliative care.
Exploring idealism in palliative nursing care through reflective practice and action research
Authors: Taylor Bev , Bulmer Beth , Hill Loretta , Luxford Catherine , McFarlane Jenny , Reed Juanne , Stirling Kate
Published: May 2014

This article describes a qualitative research project using a combination of action research and reflective practice. Six experienced registered nurses identified their tendency towards idealism in their palliative nursing practice, which they defined as the tendency to expect to be 100% effective all of the time in their work. Participants collaborated in generating and evaluating an action plan to recognize and manage the negative effects of idealism in their work expectations and behaviours. Participants expressed positive changes in their practice, based on adjusting their responses to their idealistic tendencies towards perfectionism.
Assessment and management of fatigue in patients with advanced cancer: developing guidelines
Authors: Coackley A , Hutchinson T , Saltmarsh P , Kelly A , Ellershaw JE , Marshall E , Brunston H
Published: May 2014

Cancer-related fatigue is one of the most important untreated symptoms of cancer, with a prevalence between 60 and 100%, but there has been a reluctance to prioritize fatigue and develop effective management strategies. The development of standards and guidelines will encourage a more systematic approach and help to stimulate further research. The Mersey Palliative Care Audit Group has developed guidelines for the assessment and management of fatigue. These guidelines were produced following a regional survey, which looked at both the educational needs of nurses, and the impact of fatigue on patients with advanced cancer.
Experiences of families in which a child has a prolonged terminal illness: modifying factors
Authors: Steele Rose G
Published: May 2014

A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining families’ experiences when a child with an NLTI is dying at home. In this grounded theory study, data were collected from eight families through observations and audiotaped interviews. Families moved through a process of ‘navigating uncharted territory’ as they lived with their dying child. The strategies that families used to manage this phenomenon were influenced by four intervening conditions that reflected the broader structural context of the phenomenon: relationships with health-care providers, availability of information, gender differences, and communication between parents. Each condition facilitated or constrained the strategies that families were able to use. Implications for research, education and practice are discussed.
A reflection on Cicely Saunders’ views on a good death through the philosophy of Charles Taylor
Authors: Thoresen Lisbeth
Published: May 2014

In her writings, Cicely Saunders has developed a total framework of caring for seriously ill people. Saunders’ reaction to what she has experienced as bad contemporary post-war health care is to be found in her hospice philosophy. In this article this philosophy is analysed through the writings of Charles Taylor. Taylor is a Canadian philosopher who has delivered important views on what it means to live a ‘good’ and ‘authentic’ life in a modern society. By focusing on Saunders’ writings from Taylor’s perspective it becomes apparent that Saunders has created a very modern theory. The author has found that different aspects of a good and authentic life are important values in Saunders’ good and authentic death. These findings are followed by one question: is Saunders’ hospice philosophy too focused on values like individuality, control and autonomy, giving too little attention to fragility and dependency?
Economic evaluation of specialist cancer and palliative nursing: a literature review
Authors: Douglas Hannah-Rose , Halliday Debbie , Normand Charles , Corner Jessica , Bath Peter , Beech Nicola , Clark David , Hughes Philippa , Marples Rachael , Seymour Jane , Skilbeck Julie , Webb Tom
Published: May 2014

Little progress has been made in economic evaluation of specialist cancer and palliative care nursing. A literature review of economic studies of clinical nurse specialists (CNSs) was undertaken to assess how the measurement of economic outcomes has been tackled in the literature to date. The initial search found 400 studies. Abstracts from all the studies were reviewed but only 17 studies met the basic criteria for inclusion, reporting primary cost and outcomes data, and clearly specifying the role of a CNS. All of the studies but one focused on direct patient care rather than other CNS roles and were undertaken alongside effectiveness studies. The economic evaluations considered only a narrow range of costs, but a wide range of outcomes. Specific nursing outcomes were only reported in a minority of studies. None of the studies reported cost-effectiveness ratios. However, CNS interventions were reported to be both less costly and more effective than alternative forms of care, negating the need for further cost-effectiveness analysis. Overall, the papers were not of good quality, reducing the validity of the findings. Robust economic evaluations of the CNS role need to be undertaken. These should involve nursing researchers and practitioners so that evaluations reflect the complex and multidimensional nature of CNS care and meet the required standard of evidence to influence practice.
Proactive palliative care choices for haematology day unit patients
Authors: Boyce Anne , McHugh Mandy , Lyon Penny
Published: May 2014

End-stage haematology patients may require transfusion of blood, or blood products, regularly throughout the week. One regional haematology day unit sister identified difficulties that these hospital services dependent patients were experiencing in establishing contact with local community specialist palliative care services. As a consequence, some patients were unable to access specialist palliative care services in the community when they were too unwell to attend the day unit, resulting in acute admission to hospital for terminal care. Discussion of this issue with nursing colleagues from the hospital, and community palliative care teams, led to the development of an alternative model of palliative care delivery for these patients. The new model increased patient choice. Evaluation of this model of care demonstrated an increase in planned hospice/community deaths, avoiding unnecessary emergency hospital admissions in the last days of life. All regional patients accessed some palliative care services/treatment locally and there was opportunity for patient-initiated palliative care review.
Families in palliative care: exploring family and health-care professionals’ beliefs
Authors: Duhamel Fabie , Dupuis France
Published: May 2014

At the terminal stage of a disease, health professionals are encouraged to extend the scope of their interventions to include the family. However, clinicians often feel powerless when confronted with the suffering that family members experience. According to Wright, suffering is intimately related to family beliefs. These beliefs suffuse their experience of the illness and determine their understanding of the disease, the choice of treatment and compliance with a programme of care. Moreover, clinicians’ own beliefs affect their sense of control over the patient and his or her family’s suffering. This article suggests interventions that target families and clinicians’ beliefs and attempt to ease the dying process in a context of palliative care. These interventions consist of: acknowledging and challenging health-care professionals’ own beliefs; exploring and challenging constraining beliefs of the patient and the family; and supporting beliefs that offer hope. These interventions can empower health professionals and families in their efforts to alleviate suffering related to the terminal phase of an illness.
Focus group interviews: a guide for palliative care researchers and clinicians
Authors: Hudson Peter
Published: May 2014

The focus group interview is an increasingly common qualitative research method used by health professionals. General approaches to conducting focus groups have been published. There has, however, been minimal exploration of issues regarding the use of focus groups with palliative care populations and data analysis procedures have been underreported. The aim of this paper is to provide a guide for conducting focus groups drawing on palliative care examples. A succinct outline of why, when and how to use focus groups is offered. Key ethical and practical issues are explored as well as considerations for data analysis. This guide offers researchers and clinicians fundamental strategies for the use of focus groups within the palliative care context.
The creative arts in palliative care. Part 1: a look at art therapies
Authors: Smyth Dion
Published: May 2014

The application of creative arts in palliative care can help provide a powerful insight into, and expression of, the thoughts, feelings and concerns of patients who are terminally ill.
Professionals’ views and experiences of using outcome measures in palliative care
Authors: Hughes Rhidian , Aspinal Fiona , Addington-Hall Julia , Chidgey Jayne , Drescher Uta , Dunckley Maria , Higginson Irene J
Published: May 2014

In palliative care, outcome measures are increasingly used to aid clinical practice, conduct audit and research. The objective of this study was to elicit professionals’ views and experiences of using outcome measures, paying special attention to the Palliative care Outcome Scale (POS). This article presents the results of a qualitative study of 26 professionals, experienced in using the POS, who were invited to participate in semi-structured telephone interviews. Of those invited, 22 people took part. Participants’ comments were noted verbatim throughout the interviews and data subjected to content analysis. Analysis of data identified a number of key themes surrounding outcome measures, notably their reasons for use, application in clinical settings and a range of professionals’ attitudes. The article concludes that understanding the process of outcome measures is important for improving their implementation. When undertaking further research, attention should be paid to the wider social, cultural and structural context, as factors that can influence the implementation of outcome measures. As the drive towards outcome measures continues, it is essential that measures are not developed in a vacuum. Instead they should always be informed by the needs and experiences of individuals and services.
Fatigue experience in advanced cancer: a phenomenological approach
Authors: Potter Joan
Published: May 2014

This study describes the experience of fatigue in patients with advanced cancer. A phenomenological approach was adopted to allow a fuller expression of the phenomenon of fatigue in the sample of six patients. Five major themes were identified. These were physical, psychological, social and spiritual consequences of fatigue, and helpful and unhelpful coping strategies. The themes demonstrate the complexity of fatigue, which had an all-encompassing effect on patients’ lives. The themes were interconnected and cannot be viewed independently. For these patients with advanced cancer the meaning of fatigue was intertwined with the process of adjusting to living with a terminal illness and ultimately death. It was impossible for them to separate the two. Coping strategies that would normally be of use to fatigued individuals were shown to have little or no benefit. Sensitive communication about fatigue and its meaning to the patient may assist adjustment and generate hope.
The use of personalized poems in palliative care: one Japanese health professional’s experience
Authors: Tamba Kaichiro
Published: May 2014

Facing a terminal illness is stressful and difficult for patients and their families. Compared with routine medical care, palliative care often requires intense individual attention. Art therapy is sometimes useful in such cases. In this comment piece I discuss the use of personalized poems. In my work with patients who have advanced malignancy, I have found poetry to be a valuable tool in caring for patients and families.
A personal reflection on sitting at the bedside of a dying loved one: the vigil
Authors: Woodhouse Jan
Published: May 2014

This article presents a personal reflection of the dynamics and phenomena that occurred during a 3-day vigil at the bedside of a loved one. This piece reports on the interactions between the patient, family members and staff and refutes, in this instance, the notion that dying in hospital is not a family affair. This reflection shares the experiences of one family and highlights the importance of communication among family members and also between family and staff. The article suggests a number of lessons for practitioners.
Discharging patients from hospice to nursing home: a retrospective case note review
Authors: Enes S Patricia D , Lucas Caroline F , Aberdein Nina , Lucioni Julia
Published: May 2014

This article presents a retrospective case note review of inpatients at one UK hospice considered for discharge to nursing homes during 1999 and 2000. The idea of a nursing home placement was introduced, on average, around 9 days after admission to the hospice; the most common reason cited being the inability to cope at home. Nearly a third of the patients expressed negative or ambivalent feelings about the idea. Transferring patients from hospice to nursing home is often necessary to avoid pressures on hospice beds. The potential distress of transferring patients, particularly when nearing the end of life, must be balanced against the needs of patients on hospice waiting lists. Of the 41 cases reviewed, 16 were transferred to nursing homes as planned, with a mean length of stay of just over 8 weeks. The current provision of palliative care in nursing homes raises ethical questions about transferring patients to an unfamiliar environment that may not necessarily be able to offer the same quality of palliative care. Clear communication with patients and their families and a consistent process are important to reduce some of the distress associated with this issue.
Patients’ views of using an outcome measure in palliative day care: a focus group study
Authors: Slater Adrienne , Freeman Elaine
Published: May 2014

Outcome measures are being increasingly used in palliative care. Palliative day care is significantly different to other specialist palliative care settings, as patients may attend for much longer periods of time. The aim of this study was to elicit patients’ views on using an adapted version of the Palliative Care Outcome Scale (POS) and to determine its value in identifying their individual needs. This qualitative study involved a focus group of nine patients who had used POS weekly for a minimum of 3 months. The focus group discussion was tape recorded and transcribed verbatim. Data were analysed using an interpretive phenomenological approach. Participants found POS to be a useful communication tool, which helped them to identify their individual needs.
An exciting new era for palliative care in Africa
Authors: Downing Julia
Published: May 2014

In June 2004 over 150 people from 22 African countries, gathered for the inaugural annual general meeting and conference of the African Palliative Care Association (APCA) in Arusha, Tanzania. The first Board of Directors was appointed, consisting of members from Ghana, Kenya, Nigeria, South Africa, Tanzania, Uganda and Zimbabwe. The APCA Journal of Palliative Care was also launched and it is hoped that this biannual journal will provide a forum for sharing palliative care initiatives in the African region.
Pilot project of an intermediate palliative care unit within a registered care home
Authors: Saysell Emma , Routley Claire
Published: May 2014

In the UK, increasing pressure on the acute sector has meant that intermediate care has become a pertinent issue within the health-care community. This article reports on a 6-month pilot project to develop a 2-bedded intermediate unit within a registered care home. A total of 27 patients were admitted to the unit for respite and terminal care. The project was monitored through outcome data sheets and discussions with staff. Satisfaction questionnaires were also distributed to GPs and families. It was found that the unit appeared to offer a workable alternative to inpatient care for those patients cared for in the study. More rigorous evaluation is needed to better determine the views of patients and families and to discover whether the service is able to reduce admissions to the acute sector and avoid delayed transfers of care.