bluuebunny/crossref_metadata_2025 huggingface dataset:
Intercultural palliative care: do we need cultural competence?
Authors: Gunaratnam Yasmin
Published: May 2014

Recognition of the importance of ‘cultural competence’ is now central to health care policy and to nurse education and training across the international spectrum. Detailed engagement with models of cultural competence is comparatively recent in palliative care nursing. This article presents the findings from a development project on elders and carers from ‘minority ethnic’ groups, funded by the Department of Health, to increase awareness of palliative care and to improve understanding of the needs of these groups of service users. The article describes the experiences of nurses involved in the delivery of palliative care who were interviewed in focus groups as a part of the project. It draws attention to the complicated relationships between cultural knowledge and practice and to the non-rational and visceral dimensions of intercultural care. These aspects of nursing are marginalised in current approaches to cultural competence, which emphasise the rational acquisition and application of cultural knowledge and skills by practitioners. It is suggested that recognition of these marginalised experiences can contribute to the development of new approaches to intercultural nursing that are also more attuned to the ethos and values of palliative care.
The needs of children and their families at end of life: an analysis of community nursing practice
Authors: Tuffrey Catherine , Finlay Fiona , Lewis Mary
Published: May 2014

Background : There are few studies in the literature describing or evaluating the workload of children’s community nurses prior to and following the death of a child with a non-oncological lifelimiting disorder.

Method : A documentary analysis of nursing records of all children under the care of the Lifetime Service who died during a 5 year period was carried out.

Results : The number of visits and telephone calls involving children’s community nurses in the end of life and bereavement periods was analysed and the level of the put to families found to vary widely. In total, the number of visits ranged from 0–50 (median 8). The total number of telephone calls made or received for each child ranged from 0–127 (median 20). Calls and visits were with a wide range of people relating to diverse subject areas and continued even when children were in hospital.

Conclusion : Community children’s nurses liase with a wide range of professionals and organisations and the nature of their workload at the end of life is often hidden.
A palliative approach to the management of malodour from malignant fungating tumours
Authors: West Diane
Published: May 2014

The aim of this case study is to explore the role of palliative care and the importance of a multidisciplinary team approach for the management of malodour from malignant fungating tumours. Nurses in my practice area in the UK rarely see them, find them particularly difficult to manage and the experience is often personally distressing. The disturbing nature of these tumours inflicts so much suffering on the patient and those around them that the concept of palliative care is often severely challenged and can prove to be difficult for nurses to achieve. Palliative care aims to provide a holistic team approach in addressing the complex individual needs of these patients and their families.
Complementary and psychological therapies in a rural hospital setting
Authors: Jones Gudrun
Published: May 2014

The National Institute for Clinical Excellence (NICE) (2004) in the UK has led the way in recognising the need for a holistic approach to the support and care of people with cancer, with the publication of Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer. This article describes a three-year project, funded by the Big Lottery Fund through Macmillan Cancer Support. The project is being implemented by an art therapist, clinical psychologist, complementary therapist and administrator together with the existing team of three Macmillan nurses, an art therapist and two Macmillan occupational therapists. The project aims to provide a service to patients, carers and to the health professionals who work with people with cancer and their families. The service is located in a rural and Welsh-speaking area; as such, accessibility of the service and language choice play an important role in the delivery of support and treatments.
Equality and choice in palliative care
Authors: Cooley Candy
Published: May 2014

It is well known that the provision of health care worldwide is subject to geographical variations, and the ‘NHS postcode lottery’ has provided pages of newsprint in the UK for some time. We have all heard of cases of delays in access to treatments, drugs and skilled staff. While such issues in palliative care may be extreme, for example, the availability of morphine, it is often the less dramatic issues that frustrate and confuse patients and their families.
A patient and carer survey in a community clinical nurse specialist service
Authors: Lewis Deborah , Anthony Denis
Published: May 2014

The community clinical nurse specialist (CNS) team provides specialist palliative care to clients with cancer and non-malignant, life-limiting diseases in clients’ homes, community hospitals, and residential and nursing homes. CNSs are based in health centres, community hospitals (geographically spread around the county) or at the local hospice. There has been no systematic review of patient and carer levels of satisfaction since the conception of the CNS service in 1984. Accredited as a nursing development unit (Flint and Wright, 2001) by Leeds University, the team has been encouraged to obtain service users’ views. National guidelines in the UK (National Institute for Health and Clinical Excellence (NICE), 2004) also recommend that systems are put in place to enable clients to make their voices heard in a variety of ways. The principle aim was to identify the level of patient and carer satisfaction and to highlight aspects of care that warranted alteration or improvement. The CNS team were also keen to identify the aspects of their role most helpful to patients and carers, enabling CNSs to spend their time in a way that is most beneficial to clients.
Aboriginal cultural practices on caring for the deceased person: findings and recommendations
Authors: McGrath Pam
Published: May 2014

Aim: To describe Aboriginal peoples’ post-death cultural practices in the Northern Territory.

Methods: The data were collected from 72 qualitative interviews conducted throughout the regional, rural and remote areas of the Northern Territory, Australia, with Aboriginal patients and carers, and the health professionals who cared for them.

Results: The findings indicated the importance to Aboriginal peoples of viewing the body, and post-death bereavement practices of group wailing, which can be coupled with physical expressions of self-mutilation and removal of clothing. Special ceremonies are reported for times when the body is returned home and there are strong relationship-based practices about which persons are able to handle the body.

Conclusion: The findings provide useful information for palliative care nurses working with Aboriginal peoples to ensure appropriate cultural understanding and an informed response to practice.
Palliative care and intellectual disabilities: individual roles, collective responsibilities
Authors: Jackson Sue , Read Sue , Cartlidge Deborah
Published: May 2014

Palliative care should be fully accessible to all those who need it. However, some individuals may be disadvantaged from a palliative care perspective, for a variety of different reasons. This paper brings together three practitioners working in different professional roles who all have a similar interest: palliative care for people with intellectual disabilities. Each practitioner will describe how they are developing local, practice-based initiatives in an effort to improve palliative care for this marginalised group in North Staffordshire, congruent with local and national policies.
Sleep disturbance in patients with advanced cancer
Authors: Hearson Brenda , V Sawatzky Jo-Ann
Published: May 2014

Sleep is a complex process, acknowledged to be essential for health and wellbeing. Sleep disturbance is reported to be a significant problem for patients across the cancer care trajectory, including those in the palliative phase of illness. This paper reviews the literature specific to sleep disturbance in patients with advanced cancer. The Human Response to Illness model, which is consistent with the central tenets of palliative care philosophy, provides a valuable framework to examine and organize the current knowledge related to sleep disturbance. The four perspectives of this biopsychosocial nursing model – physiology, pathophysiology, behavioural and experiential, as well as the personal and environmental factors – offer a broad perspective to better understand this multidimensional symptom and create a strong foundation for nursing care and future research directions.
The impact of a modular HIV/AIDS palliative care education programme in rural Uganda
Authors: Downing Julia , Kawuma Esther
Published: May 2014

Over 1 million people are living with HIV/AIDS in Uganda and there is a need for the provision of comprehensive palliative care. There is minimal literature with regard to the provision of palliative care in Uganda and there is no evaluation literature on the quality of palliative care education programmes. The aim of the study was to conduct an evaluation of a modular HIV/AIDS palliative care education programme undertaken in rural Uganda by the Mildmay Centre. The evaluation was based on a case study design where the researcher worked alongside the training team. It was undertaken in Rukungiri district and participants on the programme were drawn from four different health facilities within the district. The evaluation took place between January 2004 and December 2005 and multiple sources of data were used. Forty interviews and twenty focus group discussions were held, the work of the mobile training team was observed, documents reviewed and a research diary maintained by the researcher. A perceived and reported impact was seen at the patient and community level, participant level, health facility and district levels. An increase in access to care by people living with HIV/AIDS was seen as stigma was reduced and the attitudes of health workers towards people living with HIV/AIDS improved. Strengths and weaknesses of the programme were identified along with recommendations for future programmes.
What is the value of narrative research as a form of enquiry in palliative care nursing?
Authors: Rolls Elizabeth , Payne Sheila
Published: May 2014

Ever since childhood, we have been immersed in story and narrative; the ‘real’ stories we tell of our life and hear of the lives of others, as well as ‘fictitious’ stories of myths and fables, novels, television, and film. We tell stories of our past, our present and our future, and as we do so, over time, these stories grow and change as we recall and remember. Narratives come in many forms, including oral narratives, written narratives (including autobiographies, letters, journals, and diaries), visual narratives, and performative narratives (i.e. transformed to stage, poetry, and fiction) (Chase, 2005; Elliot, 2005).
Families’ transition to a Canadian paediatric hospice. Part one: planning a pilot study
Authors: Steele Rose , Derman Sarah , Cadell Susan , Davies Betty , Siden Hal , Straatman Lynn
Published: May 2014

This article describes the rationale for planning and conducting a qualitative pilot study about families’ transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate around the term ‘hospice’ versus ‘palliative care’; the different and unique needs of children requiring a palliative approach compared with adult hospice patients; and information about planning and beginning the study, including the rationale for a pilot, details about the study site, recruitment and procedures, and data collection and analysis. The results from the pilot study, as well as implications for practice and research are reported in part two.
Families’ transition to a Canadian paediatric hospice. Part two: results of a pilot study
Authors: Steele Rose , Derman Sarah , Cadell Susan , Davies Betty , Siden Hal , Straatman Lynn
Published: May 2014

The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children’s Hospice (CPHC) in Canada. The perspectives of non-hospice health care professionals (n=4) involved in the child’s care are explored. Data were gathered through audio-taped, semi-structured interviews. Initially, parents and health professionals were unaware that the hospice provided more than just end-of-life services. Parents began to consider hospice care when something changed in their lives that forced them to see things differently. This became the impetus for recognizing that CPCH might be a resource for their family. The prospect of respite care was usually the deciding factor in applying to the hospice. Parents reported benefits of hospice respite for themselves and the whole family.

Recommendations for practice and future research are offered, including discussion about the feasibility of the study procedures.
Addressing the needs of patients with advanced non-malignant disease in a hospice day care setting
Authors: Cochrane Evelyn , Colville Elaine , Conway Rosie
Published: May 2014

This article reports on the implementation process and preliminary results of a year-long pilot project providing hospice day care to patients with non-malignant conditions in Dundee, Scotland, UK. With appropriate enthusiasm, planning, consultation, staff education, access via clinical nurse specialist screening, careful referral criteria, goal-setting, an overt discharge policy and close collaboration between clinical nurse specialists, specialist palliative care services and the primary health care team, we were able to offer care to a small number of selected patients perceived to have the greatest need. This model could be applied in other regions. Twenty-eight patients out of a possible 52 who fitted referral criteria attended day care during the year, 16 were discharged and four patients died. Attendance appeared generally acceptable to patients. The project did not overwhelm the service, had negligible impact upon inpatient admissions and did not require extra funding.
Renal failure and specialist palliative care: an assessment of current referral practice
Authors: McKeown Alistair , Agar Ruth , Gambles Maureen , Ellershaw John E , Hugel Heino
Published: May 2014

Aims: This retrospective audit assessed the referral practice for patients with end-stage renal failure from the nephrology service to the specialist palliative care team in a large teaching hospital in the north-west of England.

Methods: Forty-nine referrals with ‘renal’ as a primary diagnosis over a two-year period were identified from referral data. General and palliative care notes were reviewed and a data collection tool was designed.

Results: Most common reasons for referral were for ‘placement’ (38.6%) and ‘dying/distressed’ patients (22.7%), although psychological support was also prevalent (15.9%). Renal teams discussed stopping dialysis in the majority of cases (89%), but documented preferred place of care less frequently (48.3%) and achieved discharge to these locations in less than half of cases (21.4%).

Conclusion: There was well-established referral practice between the renal and the specialist palliative care team at the hospital examined. The renal team appropriately referred for symptom control and support in the dying phase of patients. There are issues surrounding placement and increased implementation of end-of-life care tools, including the Liverpool Care Pathway, Gold Standards Framework and Preferred Place of Care documentation for renal patients, which needs to be an ongoing priority.
The role of the home-care worker in palliative and end-of-life care in the community setting: a literature review
Authors: Devlin Margaret , McIlfatrick Sonja
Published: May 2014

The majority of people would prefer to die at home if assured of high quality care and proper support for their families and informal carers. Home-care workers play a vital role in enabling patients to be cared for in their own homes; however, there is a lack of research on their role, focusing specifically on palliative and end-of-life care. A broad literature search was undertaken as part of a research study to explore the role of home-care workers in palliative and end-of-life care in the community. Key questions for the review included: exploring the role of home-care workers; factors that affect this role and examining training and support needs of home-care workers in providing palliative: and end-of-life care in the community. Positive aspects of their contribution were identified in terms of providing physical and social support, and having a key role to play in caring for patients at home. However, several studies highlighted negative aspects of the role, including limited availability of services, lack of continuity of care, time constraints, lack of flexibility and poor quality of communication with other services.
Phase 1 of an investigation into the levels of stress in United Kingdom hospice services
Authors: Hackett Addy , Palmer Stephen , Farrants Jacqui
Published: May 2014

Disagreement exists as to whether the work of palliative care nurses is more stressful than the work of other nurses, and research into the specific stressors facing hospice workers is limited. This article presents the results of phase 1 of a study investigating the levels of stress in two UK hospices and the possible coaching needs of staff working in these services. Phase 1 is a cross-sectional study that assessed the levels of stress and main work stressors experienced by staff working in the two hospices. The study used three measures: the DASS-21 (Depression, Anxiety and Stress Scale), the Health and Safety Executive (HSE) Management Standards Indicator Tool and a demographic questionnaire. Multiple regression analyses were used to investigate whether the seven HSE stressors, and two demographic factors ‘place of work’ and ‘years of work in palliative care’, were significant predictors of levels of depression, anxiety, stress and negative affect, as measured by the DASS-21. The results highlight a number of HSE stressors in need of improvement; however, the overall scores on the DASS-21 subscales indicate that this staff group does not experience more than average strain. Change was a significant predictor of depression, and demand a significant predictor of stress. Both change and demand were significant predictors of negative affect.
Podcasts on medical material: online information and resources
Authors: Smyth Dion
Published: May 2014

Online searches for items and information relating to health matters constitute one of the largest internet interest categories. Web Words continues the present series with a consideration of podcasts communicating medical material.
Palliative care in Lebanon: Knowledge, attitudes and practices of nurses
Authors: Abu-Saad Huijer Huda , Abboud Sarah , Dimassi Hani
Published: May 2014

Aim: To determine the knowledge, attitudes, and practices of palliative care nurses in Lebanon. Method: Cross-sectional descriptive survey using self-administered questionnaire; 1873 nurses from 15 hospitals were included. Results: Non-clinical nurses had better knowledge on the outcomes of palliative care than all other specialties. Oncology nurses had more favourable attitudes than other specialties with regard to informing patients about their diagnosis, patients having the right to ‘do-not-resuscitate’, involving patients in treatment choices, and respecting their wishes for alternative therapy. Surgical, acute critical care, and obstetric/gynaecology nurses had significantly more negative attitudes towards patients’ and families’ questions and concerns than other specialties. Conclusion: Formal education in palliative care and development of palliative care services are needed in Lebanon to provide quality care to terminally ill patients.
Advocating palliative nursing
Authors: Downing Julia
Published: May 2014

At the recent European Association of Palliative Care (EAPC) conference in Vienna, Catherine Walshe stated: ‘Nurses and nursing as a profession are keen to highlight their contribution to the care of patients in the palliative phase of illness’ (Walshe, 2009: 33). Yet are we as palliative nurses good at doing this?
Extending knowledge of terror management theory to improve palliative nursing care
Authors: Stevens Elaine
Published: May 2014

This commentary offers insights into terror management theory (TMT) and how the extension of knowledge may improve the palliative nursing care offered to dying people. The commentary begins with an overview of death anxiety, before providing a more in-depth review of TMT. The main implications that TMT has for palliative nursing practice will then be outlined.
A multicultural perspective on conducting palliative care research in an Indian population in Australia
Authors: Shanmugasundaram Sujatha , O’Connor Margaret , Sellick Ken
Published: May 2014

Australia’s population is culturally and linguistically diverse, with approximately one quarter of the population born overseas (Australian Bureau of Statistics, 2005). Health-care research must be culturally sensitive and due consideration given to the unique ethical, cultural, and other issues that may arise. Issues in palliative care research have become more complex as the options of care at the end of life develop in respect to the requirements of different cultures. This paper highlights the issues that arose when conducting a qualitative study of the needs and experiences of Indian families with a relative requiring palliative care, and also proposes strategies to address the ethical and methodological problems that may arise when researching this vulnerable population.
Personalized care at the end of life: from policy to practice
Authors: Fuller Alice
Published: May 2014

What does good, personalized care look like for the person approaching the end of life? ‘Help with hair and makeup’, ‘spoon feeding me out of view of the other residents’, ‘placing cards from relatives in view, rather than behind my bed’, and ‘staff who telephone back’ are the sorts of answers the National Council for Palliative Care (NCPC) receives from patients and their carers. For some time now decision-makers in the UK have sought to embed the ‘personal approach’ to health and social care services into policy documents. Not many would argue with the idea of personcentred services. Indeed, letting the patient know that they—the person—are what is important to the professionals is a key part of enabling that person to have a good death. However, while the Government’s Green Paper on social care last summer made it clear that the personalization agenda is a top priority for the Department of Health (DH), it did not explicitly explain what this would look like in practice for people at the end of life.
Development of palliative care in nursing homes: evaluation of a Danish project
Authors: Raunkiær Mette , Timm Helle
Published: May 2014

Background

There is a general lack of research regarding the palliative care of nursing home residents and professional education in palliation in Denmark. Qualification requirements need to be established, best practices must be spread, and a systematic approach to providing competent palliative care in nursing homes must be found.

Purpose

The purpose of this study was to evaluate an attempt to develop—through three pedagogical methods—the palliative care competencies of the personnel and make organizational improvements at three Danish nursing homes.

Method

A process-based, user-oriented evaluation method was used. Twenty-two nursing home employees and five teachers participated in five focus group interviews.

Results

Both the nursing home employees and the teachers felt that the project as a whole, and the three methods used, contributed to an improvement in the staff's palliative care competencies and the organization.

Conclusion

The study exposes the barriers to improving Danish palliative care provision and factors required for development to succeed. It highlights the need for recognition by colleagues, active involvement of nursing home managers, and a certain understanding of the methods, including the importance of prioritizing practice-based competence training.
Survivorship: living with and beyond cancer
Authors: Nyatanga Brian
Published: May 2014

A few years ago, a diagnosis of cancer was like a death sentence for most people. Today the picture is quite different in that, although more people are being diagnosed with cancer, they are living longer with the illness or in some cases living beyond it. In essence there is a very strong argument to suggest that most cancers might be curable or may be moving into a chronic condition phase, therefore seen as long term. We now know that an estimated 2 million people are currently living with or beyond cancer in the UK, and this figure is rising by over 3% a year (Davies, 2009) (King’s College London, 2008).
Delivering better end-of-life care: improving skills and knowledge for a better patient experience
Authors: Addicott Rachael
Published: May 2014

In 2008 the Department of Health (DH) published the End of Life Care Strategy, its vision for improving the care of patients nearing the end of life. The Strategy provided a welcome and long-awaited recognition of the importance of high quality end-of-life care-the emerging emphasis highlighted the significant inattention the delivery of this area of care had historically received, and drew attention to the fact that care and treatment were not always as good as they could be.
Conducting qualitative research with palliative care patients: applying Hammick’s research ethics wheel
Authors: Whiting Lisa S , Vickers Peter S
Published: May 2014

This paper discusses the particular ethical issues that are present when attempting to undertake research involving patients accessing palliative care for cancer. It focuses on the use of Hammick’s research ethics wheel (REW) in relation to a research study undertaken by the authors. Applying the REW enabled the authors to identify and incorporate the ethical issues and dilemmas inherent within such a study at a practical level. Ethical reasons for undertaking research with such vulnerable participants are explained and justified with reference to the REW. Ethical considerations are crucial to any research study involving human participants, but particularly so when dealing with participants who are as vulnerable as those in a palliative care setting. The use of the REW enabled the authors to feel confident that all such concerns had been identified before data collection began.
The politics of change
Authors: Becker Bob
Published: May 2014

After what has been one of the most closely fought general elections in living memory, the UK now has a new government, and for the first time in close to 70 years it’s a coalition government. That in itself is not unusual and there are many countries around the world who thrive on such arrangements despite the lack of an overall majority for any one political party. The potential for positive change with a fresh approach to the complex issues facing society is enormous, but also fraught with risk. The palliative care agenda in the UK has never been higher and we have at our fingertips the opportunity to transform end-of life care for people of all diagnoses in all environments over the next decade and beyond via the first coherent all-embracing government strategy (Department of Health, 2008). So far so good. The outgoing government have funded and supported this innovative initiative from tender shoots to the point where it is beginning to bear fruit, and the incoming government have made encouraging noises about continuity.
Talking openly about death
Authors: Nyatanga Brian
Published: May 2014

Although around half a million people die in England each year, most deaths occur away from their homes and in institutions with ‘strangers’ caring for them. Admittedly, a few die in their own homes, however, this number is not high enough to claim that as a society we are becoming more familiar with death. The reality is that as a society we do not openly discuss death (Department of Health (DH), 2008). We recognize that this very point is the central message in the second chapter of the End of Life Care Strategy (DH, 2008). Two years on, we have seen the creation of Dying Matters as a coalition working to support changing knowledge, attitudes and behaviours towards death, dying and bereavement. One of the intended outcomes is that we can all treat living, and dying, as natural normal processes. For health professionals, open discussions would ensure caring is more honest in terms of what treatment can be realistically offered, while openly discussing with patients when death is likely to occur. It is also possible that open discussion about death may lead to an improved bereavement profile for relatives. Although progress to date is welcome, more could be done to expedite the process. Among the many aspects of our attitudes that may need reviewing, the continued use of euphemisms for death must be a priority. Continued use of euphemisms in death and dying suggests a psychological ploy to deflect death into the subconscious, by generating ‘labels’ that are perceived in themselves as acceptably palatable to talk about. For example, ‘he passed away’ would be more acceptable ‘than he is dead’. Euphemisms may carry an occasional tendency to confuse the meaning inherent in such statements as ‘I am afraid we lost him yesterday’.
Does the new GMC guidance on good practice and decision making in end-of-life care go far enough?
Authors: Taylor Ros , Russell Sarah
Published: May 2014

All those involved in end-of-life care should welcome Treatment and Care Towards the End of Life: Good Practice in Decision Making, the new guidance from the General Medical Council (GMC), which comes into effect on 1st July 2010 and replaces Withholding and Withdrawing Life-Prolonging Treatments (GMC, 2002). Specifically written for doctors, this new guidance will be helpful to all health professionals because decision making at the end of life is increasingly multiprofessional. The GMC has taken into account over 500 individual and organizational consultations on the draft document, and has clearly tried to reflect the complex legal and ethical scenarios that challenge health professionals on a daily basis. Recent legislation relating to mental capacity and human rights is embraced and usefully simplified in the guidance.
The Liverpool Care Pathway in intensive care: an exploratory study of doctor and nurse perceptions
Authors: Walker Ruth , Read Sue
Published: May 2014

The Liverpool Care Pathway (LCP) provides an evidence-based framework of care for the dying patient and provides guidance on comfort measures, discontinuation of inappropriate interventions, anticipatory prescribing, holistic care and care of the family after death. End-of-life care is becoming an important issue in critical care, and the LCP has been adapted for use in intensive care units in the United Kingdom. A qualitative study using descriptive phenomenology was used to explore doctor and nurse experiences of the impact of the LCP in two intensive care units in a 1000-bed teaching hospital in the north-west Midlands. The staff experience of the LCP was dependent on their role, with mixed reports about frequency of use and level of education received on the LCP. Education and adequate support was identified as being pivotal to the successful implementation of any type of LCP.
Keeping up with advances in genetics and its sceptics
Authors: Smyth Dion
Published: May 2014

Mankind’s progress in the field of genetics has lead to the ability to improve crop yields and animal husbandry, and modern innovations such as cloning Dolly the sheep and creating a new bacterial life form. The pace, acceptability and suitability of these developments are often not without some disquiet or disagreement, and health practitioners will need to keep up to date with the contemporary concerns and controversies likely to affect their future practice. This month’s Web Words finishes the recent series about genetics with a review of some of the science sites available for the revision of genetic material and, in the sense of fairness, includes one site for those readers for whom the evolution of genetic science is not all it is reported to be.
Developing nurse independent prescribing in a specialist palliative care setting
Authors: Quinn Bernadette , Lawrie Iain
Published: May 2014

Nurse independent prescribing (NIP) has been at the centre of government policy in the UK to improve patient care. Clinical nurse specialists (CNSs) are key workers in the delivery of specialist palliative care services, and NIP enables them to improve the quality of care their patients receive. However, there are known barriers that prevent qualified NIPs from prescribing, including lack of NIP policies in organizations and difficulties in ensuring ongoing mentoring and support. This article describes how an NIP policy was developed and introduced within an independent specialist palliative care setting (hospice community team). The process undertaken by the NIP policy team is described as well as approaches to overcoming potential and actual barriers. Challenges in creating a NIP policy are explored, including such issues as managing off-label prescribing, obtaining peer support and securing insurance cover. As CNSs often work independently, it was felt important to provide mentoring following qualification by senior medical staff in order to gain confidence in their new roles in NIP. Wider influences, such as initiatives to increase care of patients in the community and 7-day working by CNSs are also considered. This article aims to support other health care providers, both in the independent and national health sectors, who plan to deliver the NIP agenda. Barriers to NIP must be addressed in order to achieve success and to ensure specialist palliative care nurses trained in NIP are able to put their extended skills into practice.
Valuing education
Authors: Becker Bob
Published: May 2014

Education is a complex business and demonstrating its worth to an employer is difficult because the net result of learning does not always translate into changes in behaviour in the workplace, despite an increase in knowledge. There are many factors which influence this process that are beyond the control of teachers, the main ones being the culture in which the person works and the perceived support they get from colleagues and management. Health care is no different and in these times of financial cutbacks we are all being asked to demonstrate ‘value for money’.
Evaluating the impact of nurse independent prescribing in a weekend clinical nurse specialist service
Authors: Webb Wendy Ann , Gibson Vanessa
Published: May 2014

Nurse independent prescribing (NIP) is having a significant positive impact on patient care, yet little is written about NIP initiatives in the out-of-hours (OOH) period, which is a critical time for those with palliative care needs who wish to remain at home. This paper evaluates the impact of an NIP initiative in one weekend clinical nurse specialist (CNS) service in the UK. A 6-month audit of prescribing activity data is presented along with the results of a survey of local GPs. The paper concludes that NIP offers an effective way for the CNS working in the OOH period to offer timely and appropriate symptom control in a single, seamless consultation. Discussion surrounds the factors that affect the success of NIP initiatives and practical recommendations for other providers developing such a service.
Visiting all hours: a focus group study on staff's views of open visiting in a hospice
Authors: Gray Helen , Adam Joan , Brown Duncan , McLaughlin Patricia , Hill Vicky , Wilson Lorraine
Published: May 2014

St Columba's Hospice, Edinburgh, is a busy specialist palliative care unit with 30 inpatient beds. A previous publication reported the first strand of a qualitative exploratory study evaluating the impact of open visiting on patients at the hospice. This paper reports on the second strand, which sought to elicit the views of the hospice staff through focus group interviews. The main themes identified were valuing the family and friends as visitors, involving the family as part of the care team, patient powerlessness over visiting, shared rooms and their impact on visitors and patients, and the staff role as advocates or gatekeepers. Several strategies for developing a flexible and ‘patient-controlled’ visiting policy were identified, including quiet times without visitors, restriction of visitor numbers in shared rooms, and encouraging breaks from visiting. Since the study was completed, the hospice's visiting policy has been modified to ensure that it is patient-centred and meets the needs of patients and families.
Evaluating a protocol to train hospice staff in administering individualized music
Authors: Gallagher Maribeth
Published: May 2014

The ongoing extension of the average human lifespan in most parts of the world forecasts an unprecedented number of aging adults developing Alzheimer's disease or related dementia. Behavioural and psychological symptoms of dementia, commonly referred to as agitated behaviours, are estimated to occur in over 80% of patients and are typically treated using antipsychotic medications, posing significant morbidity and mortality risks. An evidence-based protocol known as individualized music (IM) offers a non-pharmacological intervention to reduce agitation. This project, using a one-group pre-test–post-test design, was implemented by training a self-selected sample of 24 hospice professionals to use the IM protocol with dementia patients. The effectiveness of the training on increasing the participants' knowledge of and confidence in using IM was explored. Paired t-tests were employed to analyze the data and the results of the analysis were encouraging, suggesting that it is feasible to educate multidisciplinary hospice staff in implementing the IM protocol. Thus, there is potential for using IM in the palliative treatment of persons with advanced dementia.
What are patients’ priorities when facing the end of life? A critical review
Authors: Black Jason
Published: May 2014

This critical review aimed to investigate what patients' priorities are when facing the end of life, in order to gain further understanding of this issue. Academic databases were searched using key terms, and through a method of elimination and deduction using specific inclusion/exclusion criteria, suitable research studies were found. These articles were then assessed for their quality, and specific data was extracted from the final selection using appropriate information-gathering tools. In these final four articles the methodological processes used to explore terminally ill patients' needs were generally appropriate, although there was a lack of reflexivity (researcher reflection on the experience). Useful narrative themes were produced from all four papers for further discussion. The patients had similar priorities across all four articles, which were related to understanding and accepting their changing health status, the need to hold on to some normality in life, the need to feel supported by friends and family and to know they will be taken care of after the death, and the need to have good and trusting relationships with health professionals.
Critical reflections on end-of-life care for people with intellectual disabilities: a single case study approach
Authors: Read Sue , Cartlidge Deborah
Published: May 2014

People with intellectual disabilities (ID) are enjoying increasing longevity, but are simultaneously having to cope with the additional health problems associated with ageing. Even though people with ID are reported to have worse health than the rest of the population, resulting in greater health-care needs, they also have poorer health care than the average person, including including-end-of-life care. The aim of this paper is to explore the challenges to providing effective end-of-life care for a person with an ID by using critical reflection from a nursing care perspective on an illustrative case study. Death never occurs in a vacuum but rather occurs in a social context, and the social context here was crucial to providing appropriate end-of-life care. It is hoped that the paper will promote discussion both around end-of-life care generally and in relation to this marginalized population.
Neuropathic pain management in children
Authors: Hyde Catherine , Price Jayne , Nicholl Honor
Published: May 2014

There are difficulties in assessing, managing, and evaluating neuropathic pain in dying children, particularly those with neurological impairment. Neuropathic pain in children often presents differently to how it presents in the adult population. Comprehensive assessment as well as pharmacological and non-pharmacological interventions are crucial to its successful management and frequently require input from an interdisciplinary team. Notwithstanding the need for further research, this paper brings together research papers, reviews, and clinical guidelines to present an exploration of existing evidence regarding care for children with neuropathic pain and their families.
A hypnotherapy intervention for the treatment of anxiety in patients with cancer receiving palliative care
Authors: Plaskota Marek , Lucas Caroline , Evans Rosie , Pizzoferro Kathleen , Saini Treena , Cook Karen
Published: May 2014

This pilot study aimed to assess the benefits of hypnotherapy in the management of anxiety and other symptoms, including depression and sleep disturbance, in palliative care patients with cancer. Eleven hospice patients received four sessions of hypnotherapy and completed the Hospital Anxiety and Depression Scale, the Edmonton Symptom Assessment System, and the Verran and Snyder-Halpern Scale at set time points. Wrist actigraphy also provided an objective assessment of sleep quality. After the second hypnotherapy session there was a statistically significant reduction in mean anxiety and symptom severity, but not in depression or sleep disturbance. After the fourth session there was a statistically significant reduction in all four patient-reported measures but not in actigraphy. These results offer evidence that hypnotherapy can reduce anxiety in palliative care patients, as well as improving sleep and the severity of psychological and physical symptoms. Further studies are needed to explore whether the observed benefits were a direct result of the hypnotherapy and how the intervention could most benefit this patient population.
Exploring district nurses' reluctance to refer palliative care patients for physiotherapy
Authors: Nelson Lesley Ann , Hasson Felicity , Kernohan W George
Published: May 2014

Aim:

To explore district nurses' beliefs regarding referral of a patient receiving palliative care for physiotherapy.

Method:

Three focus groups, guided by the Theory of Planned Behaviour, were undertaken with a purposive sample of 16 district nurses. All were audio-recorded, transcribed, and subject to content analysis.

Results:

Nine beliefs were identified as influencing referral decisions, the majority of which were negative, such as the belief that physiotherapists lack palliative care skills and could foster false hope. Additional barriers to referral included a lack of contact and communication with physiotherapists, poor knowledge or experience of physiotherapy, unsuitable referral systems, and poor availability of services.

Conclusion:

These findings help to explain why so few patients receiving palliative care access rehabilitation services. To ensure that patients have appropriate access to palliative rehabilitation, there needs to be consideration of how the identified barriers can be overcome.
A training needs analysis of neonatal and paediatric health-care staff in a tertiary children's hospital
Authors: Gallagher Katie , Cass Hilary , Black Rachel , Norridge Matthew
Published: May 2014

Introduction:

Despite clinical advances in neonatal and paediatric palliative care, there is limited educational provision to underpin practice. To develop appropriate educational content, the needs of staff working in this area must be identified.

Aim:

To explore the educational needs of staff working with families with palliative or end-of-life care requirements.

Methods:

A training needs analysis (TNA) explored the perceived knowledge, confidence, and support of neonatal and paediatric health professionals in a tertiary children's hospital in London.

Results:

An online Likert scale TNA was completed by 111 participants. The results indicated that the staff did not feel educationally prepared in their working areas, despite having regular contact with families with palliative or end-of-life care issues.

Discussion:

Understanding the educational needs of staff can underpin the development of appropriate educational interventions. These modules require evaluation to determine their impact on health professionals' knowledge and confidence.
Sharps injuries and their prevention: what the new European legislation may mean for palliative care services
Authors: Gabriel Janice
Published: May 2014

Approximately 3 million health-care workers throughout the world, and more than 1 million in Europe, experience a percutaneous injury each year as a result of accidents with needles or other sharps. The consequences of this can be devastating, ranging from fear, anxiety, discomfort, and embarrassment to contraction of blood-borne infections. A new European Union Directive on the prevention of sharps injuries that must be implemented by May 2013 aims to ensure that health-care workers throughout Europe have access to safer sharps and needle-free devices. The present paper outlines what the introduction of this directive will mean for health-care services, with particular consideration of palliative and specialist palliative care services.
Collaboration between the specialties in provision of end-of-life care for all in the UK: reality or utopia?
Authors: Procter Elizabeth
Published: May 2014

The UK End of Life Care Strategy (EoLCS) requires specialist palliative care services to contribute to end-of-life care for all. This systematic review aims to critically appraise literature published in the UK to identify how specialist palliative care professionals can collaborate with other health professionals within four of the key National Service Framework areas: heart failure, chronic obstructive pulmonary disease, neurological conditions, and dementia. Relevant literature was identified by electronic searches of various databases and websites and via secondary sources. A limited amount of quality research was found. Thematic analysis was applied and the over-riding themes were barriers to collaboration, organizational issues, and patients’ and carers’ views. The review concludes that when a collaborative approach to care is used, quality end-of-life care is achieved. Each disease pathway needs greater clarity regarding how it links with the EoLCS.