bluuebunny/crossref_metadata_2025 huggingface dataset:
Managing awareness: negotiating and coping with a terminal prognosis
Authors: Johnston Gail , Abraham Charles
Published: May 2014

This study examined the way in which a terminal cancer prognosis was negotiated by patients and their lay carers, and the complexities involved in managing a context of awareness. Individual semi-structured interviews were undertaken with 16 patients and 14 lay carers. These were transcribed verbatim and analysed using a grounded theory approach. The process started with being given bad news, when the concept of life was no longer open-ended. The need to maintain hope influenced the amount of information sought by patients and their families and was an important strategy in helping patients cope with the knowledge of their disease. Levels of awareness appeared to be influenced less by setting, than by the way the prognosis was managed within individual families. Difficulties facing patients and carers in knowing how to communicate with each other within a context of open awareness suggest that they need help in learning how to do this. Achieving an environment to enable this requires private space and staff skilled in enabling and facilitating the complexities of communication between patients and their carers.
Improving standards for palliative care services in Northern Ireland
Authors: Hinds Mary
Published: May 2014

Northern Ireland has a population of approximately 1.6 million people. Within the geographically small area there are many isolated rural communities. Since 1969, health and social services in Northern Ireland have been managed and delivered through an integrated health and social care system, unlike the rest of the United Kingdom (UK) where the two are administered separately. Health and social services are commissioned through four health and social service (HSS) boards, general practitioner (GP) fundholders and a number of pilot commissioning schemes, and services are provided through or by HSS trusts, voluntary agencies and the independent sector.
Remembering spiritual care
Authors: Chung Young
Published: May 2014

Practitioners involved in caring for terminally ill patients report that the most needed services for the terminally ill are pain management and control, together with emotional support and spiritual services (Speck, 1999).
Instruments for assessing quality of life in palliative care settings
Authors: Massaro Teresa , McMillan Susan C
Published: May 2014

Quality of life is an outcome that is particularly important during palliative care. However, in order to measure this outcome, it is necessary to have a valid and reliable measure. The purpose of the article was to identify and describe quality of life measures that are appropriate for use in palliative care settings. Characteristics that are believed to critical for quality of life instruments include the following: the instrument should 1) be multidimensional; 2) provide self-report data; 3) be useful in the setting in which it is to be used; 4) be valid and reliable for use in palliative care settings. The five scales described measure a variety of dimensions including physical, psychological, social, spiritual, existential, support, symptoms and functional aspects of quality of life. All but one are self-report instruments. All have evidence of validity and reliability for use with palliative care populations.
Nurses must seize the research initiative
Authors: Wilkinson Susie
Published: May 2014

The First Congress of the Research Network of the European Association for Palliative Care (EAPC) took place in Berlin in December 2000, and was attended by approximately 300 delegates.
Metaphor: exploring its origins and therapeutic use in death, dying and bereavement
Authors: Spall Bob , Read Sue , Chantry David
Published: May 2014

Metaphor is a commonly used and powerful language device for expressing complex thoughts or feelings. This exploratory qualitative study examined the sources and function of metaphor in relation to death, dying and bereavement. The study involved focus group discussions and follow-up questionnaires with professionals from three different contexts (nursing, hospice and bereavement counselling), and gave rise to a number of interesting observations. The results have implications for professional carers, particularly those working in dying and bereavement contexts, in relation to facilitating the use of metaphor to enhance the quality of communication. Suggestions are made for further research.
An evaluation of teamwork within a specialist palliative care unit
Authors: Donaghy Kevin , Devlin Breige
Published: May 2014

This small-scale 10-month study evaluated teamworking within a specialist palliative care team. The study aims were to: collect, analyse and summarize information on how team members perceive teamworking; compare team members’ perceptions after a teambuilding workshop; and to evaluate the longer-term effect of this training on the team. A group of practitioners from a local Marie Curie Cancer Care Centre was selected and included members from all available disciplines. A piloted questionnaire was used to obtain qualitative and quantitative input. The team as a whole scored themselves above average on almost all counts. Following the teambuilding workshop significant improvement was seen in areas such as role appreciation and communication but not all improvements were long lasting. A perception of understaffing was noted as being one of the largest negative influences on teamwork whereas the setting and maintaining of agreed team objectives and having sufficient educational opportunity were positive influences. Although teambuilding sessions appear to have the potential to produce the desired benefits, they should not be initiated at a time when staff already feel anxiety over their workload.
Nurses’ attitudes to palliative care in nursing homes in Western Australia
Authors: Cohen Lynne , O’Connor Moira , Blackmore Amanda Marie
Published: May 2014

Nursing homes are one of the care settings in Western Australia where older people may spend their final years. Residents should be able to receive palliative care where appropriate, but this type of care is not always available at some nursing homes in the state. This study investigated nurses’ attitudes to palliative care in nursing homes by examining their cognitive, affective and behavioural information. A sample of 228 nurses working in nursing homes completed a questionnaire, using a free response methodology. Results showed that participants had either a positive or negative attitude to palliative care. Cognitive and affective information significantly and independently predicted the attitudes of nurses, whereas knowledge of palliative care did not contribute significantly to these attitudes. Nurses currently working in palliative care were more positively disposed towards such care, but this disappeared when they ceased working in the area. There is an emphasis on education in the literature which does not take into account the beliefs and emotions of the nurses. Therefore, there is a need to consider these in undergraduate and postgraduate training for nurses. Current experience is also important in palliative care education. The results obtained from nurses in this study should be incorporated into policy for introducing palliative care into nursing homes and used to provide support and assistance to nurses working in this field.
Learning together: use of simulated patients with nursing and medical students for breaking bad news
Authors: Wakefield Anne , Cooke Sam , Boggis Caroline
Published: May 2014

This article reports a small research study on the use of simulated patients for teaching medical and nursing students how to break bad news. A total of 34 nursing and medical students undertook the activity in mixed groups. Data obtained from free response questionnaires and a focus group were analysed and independently coded to identify recurrent themes across the data and the two student groups. Students reported that simulated patients gave instant feedback about their performance which they found useful. Students felt that working in doctor-nurse pairs helped them formulate strategies for imparting the bad news and that this made them to feel better prepared and less isolated. The article outlines why the use of simulated patients may be valuable and suggests that this form of teaching could be used in other types of communications training. The use of simulated patients appears to have the potential to enhance patient-practitioner and practitioner-practitioner interactions.
Pressure ulcers in palliative care: development of a hospice pressure ulcer risk assessment scale
Authors: Henoch Ingela , Gustafsson Marianne
Published: May 2014

The aim of this study was to construct a pressure ulcer risk assessment scale appropriate for palliative care patients. Risk assessments were performed using the modified Norton scale and nine newly constructed scales, consisting of the modified Norton scale with various changes. Data was collected from 98 patients in a Swedish hospice between April 1999 and September 2000. Pressure ulcer occurrence was registered weekly in the patient record. Increasing age, male gender, physical inactivity, immobility, decreasing food and fluid intake, incontinence, poor general physical condition and lean body constitution were shown to be significant risk factors for development of pressure ulcers in terminally ill cancer patients. After further testing of the data, one scale was found to be superior in identifying patients at risk, with higher validity than the modified Norton scale. The assessment items in this new scale, The Hospice Pressure Ulcer Risk Assessment Scale (in Swedish: Hospice Riskbedömning Trycksår, (HoRT)), are physical activity, mobility and age.
District nurse involvement in providing palliative care to older people in residential care homes
Authors: Goodman Claire , Woolley Rosemary , Knight Denise
Published: May 2014

Although less than 15% of older people in care homes die of a terminal disease such as cancer, many more die following a period of slow deterioration. In the UK, residents of care homes receive their nursing care from primary health-care providers. This article reports on a study that describes how district nurses and care home managers define their responsibilities when caring for residents who are dying. The findings presented are from a detailed survey of 89 district nurse team leaders and 96 care home managers. District nurses were the most frequent health professionals visiting care homes, but less than half reported involvement in palliative care. The differing priorities and perceptions of participants regarding what constituted nursing and personal care influenced older peoples’ access to palliative care services. Furthermore, the organization of care and the stability of the care home workforce affected participants’ ability to establish ongoing supportive working relationships. It is argued that unless there is an organizational review of current practice, older people will continue to have unequal access to generalist and specialist palliative care.
A pilot study into the use of a multisensory environment (Snoezelen) within a palliative day-care setting
Authors: Schofield Patricia
Published: May 2014

Sensory environments may potentially provide an atmosphere of calm and refreshment. This small pilot study used a randomized controlled trial (RCT) design and semi-structured interviews to investigate the use of the Snoezelen multisensory environment in palliative day care. Its second aim was to explore the feasibility of the RCT design in advance of a possible larger trial. The study compared Snoezelen with a normal ‘quiet room’ setting. Following screening for anxiety, 26 patients were recruited and randomly assigned to the control or experimental group. Anxiety and depression were assessed using the Hospital Anxiety and Depression scale and quality of life assessed using the European Organisation for Research and Treatment of Cancer Core 30 questionnaire. A significant reduction in anxiety was seen with the experimental group (P=0.01) but no changes were observed in any of the quality-of-life subscales. However, the results should be viewed with caution, as there were some differences between the groups in two of the quality-of-life subscales. Data from semi-structured interviews suggested Snoezelen may promote relaxation. It is concluded that Snoezelen is feasible for use with this patient group and recommendations are made for further research.
The palliative care needs of ethnic minority patients: staff perspectives
Authors: Diver Fiona , Molassiotis Alexander , Weeks Les
Published: May 2014

The aim of this study was to assess palliative care staff’s perceptions of multicultural care provision and explore the barriers and facilitators to culturally sensitive care. Qualitative semi-structured interviews with five palliative care staff were conducted. Staff showed awareness of inter-cultural diversity and the importance of individualized care. It also became apparent that staff did not possess ethnocentric attitudes. Facilitators of multicultural care that emerged from the data included training, learning from experience, the use of culturally specific literature and resources, and effective communication channels in the team. However, barriers were present, including limited interpreting services, and some staff and other patients’ negative behaviours towards ethnic minority patients. The findings lead to recommendations for better resourcing and expansion of interpreting services, and for more training, based on staff’s desire for limited culturally specific knowledge in sensitive combination with an individualized care philosophy.
Emails, text messages and … poems
Authors: Smyth Dion
Published: May 2014

We live in an age where communication has never been so quick, easy and convenient. The speed and expedient reach of email, the Internet and text messaging have all but supplanted the traditional spoken and written word in much of our day-to-day discourse. In these circumstances, the apparent rise in popularity of poetry and spoken verse, in the UK at least, is a welcome surprise. The increasing number of books and readings, regular radio and television programming all attest to a growing appreciation of the verve and vitality that this art form offers. On page 32 of this issue Ann Robinson provides a personal exploration of the use of poetry in palliative care.
Providing spiritual care in end-stage cardiac failure
Authors: Oates Lyle
Published: May 2014

Spiritual care is an integral component of palliative care, whatever a patient’s diagnosis. This article looks at spiritual care from the perspective of providing care for patients living with end-stage heart failure. Such patients face many debilitating symptoms and much uncertainty. The issues of how spiritual needs should be addressed, what spiritual care entails, and the most appropriate person to provide spiritual care are examined.
Nurse prescribing in palliative care
Authors: Smyth Dion
Published: May 2014

Since the introduction of the nurse prescribing initiative in the UK a decade ago, the list of medicines that specially trained nurses can prescribe has developed as steadily as the number of nurses undertaking approved courses of preparation. The development of a nurse prescriber’s formulary and extended formulary and, subject to parliamentary approval, supplementary prescribing, means that suitably skilled and competent palliative care nurses are able to provide patients with effective, efficient and expert clinical management to enhance care and comfort. This month’s Web Words considers sites that offer valuable content and commentary on this subject.
Cardiopulmonary resuscitation policies in northwest England hospices: a telephone survey
Authors: Douglas Claire A , Lewis-Jones Cathy
Published: May 2014

Design A survey into existence of resuscitation policies in hospices in Northwest England

Methods All 25 hospices in the region were contacted. The clinical services manager or equivalent person was interviewed by telephone by means of a structured questionnaire.

Results The telephone survey had a 96% response rate. Sixteen (67%) hospices did not have a resuscitation policy although 50% of this group were developing a policy. Only eight (33%) hospices had a formal policy at the time of interview. Twenty hospices (83%) provided staff with annual training in basic resuscitation. One hospice (4%) discussed cardiopulmonary resuscitation (CPR) with all patients admitted, whereas six (25%) discussed CPR only if the patient raised the topic. Five hospices (21%) would advise the patients that they should be cared for in an acute hospital, as no resuscitation would be provided. Only four hospices (17%) had written information on resuscitation.

Discussion There was significant variation in the production and adherence to guidelines on resuscitation, with some patients being denied access to specialist palliative care units, as they would wish resuscitation. Much anxiety and confusion regarding this topic existed and staff clearly required further education and guidance in order to develop policies within their units and to provide standard treatment within all specialist palliative care units.
Resources on pain for patients, carers and professionals
Authors: Smyth Dion
Published: May 2014

Palliative care combines compassion with comprehensive assessment and the application of appropriate active interventions to manage the distress associated with life-threatening illness. Control of pain, a symptom that can interfere with physical functioning, psychological wellbeing, spiritual welfare and social interaction, is paramount.
IJPN special issue on euthanasia
Authors: Larkin Philip
Published: May 2014

There are probably few issues in palliative care more likely to raise concern and debate than euthanasia. The issue is never far away from the media and often described in highly emotive language. It is clear that our consideration of euthanasia is not merely an academic exercise, but cuts to the roots of our culture, values and beliefs.
Gender: a relevant analytic key to palliative care?
Authors: Thoresen Lisbeth
Published: May 2014

Nursing is still typically female work. My home country, Norway, is often presented as promoting equality between men and women, but only about 7% of nurses are men. This is an interesting and strange phenomenon, however, little attention appears to be paid to female dominance in nursing. There are many interesting questions to be asked about why women become nurses, but perhaps even more interesting is to study the impact that female dominance may have on nursing practice, on caring ideologies and on how we organize caring work.
Reviewing the progress of cancer networks in the UK
Authors: Menon Anna
Published: May 2014

The Calman Hine report, A Policy Framework for Commissioning Cancer Services (Department of Health (DoH), 1995), published 10 years ago, investigated cancer services in England and Wales and heralded the movement of cancer services into the 21st century. It suggested significant reorganization in cancer care to improve patient outcomes and, as part of this, suggested that cancer networks were implemented to oversee the improvements in cancer care.
Bridging the specialist-generalist divide: a creative Master’s programme initiative
Authors: Greenstreet Wendy
Published: May 2014

This article outlines the development of a new Master’s programme that is suitable particularly for those who are interested in managing palliative care in generalist care contexts. Disseminating the essence of excellent palliative care provision, accessible by the minority to the majority in need, has been an issue for some time. National Service Frameworks identify the contribution of both education and workforce planning to facilitate such provision. A gradual shift in design of palliative programme provision has seen the emergence of education that is more malleable to varied practice contexts. This new MSc Palliative Care Programme is centred on interprofessional education, and through collaborative working, shares modules with a neighbouring university to produce financially viable provision. Essential palliative content is delivered in compulsory taught modules, however, elective options include open or work-based modules that facilitate palliative practice development tailored to specific context need. Postgraduate study, associated with leading practice, means that a few key staff can significantly impact disseminating enhanced palliative practice across care environments. In this way, in the community and in institutions where the majority of older people dying of chronic illness are cared for, resources can be used purposefully to maximize the chance of ‘a good enough death’ (McNamara, 2001).
How basic is palliative care? Further views
Authors: Lee Gay
Published: May 2014

Hamala Gupta and her respondents have raised many fundamental and fascinating issues about palliative care (Gupta, 2004, 2005; Downing et al, 2005) and I would like to respond in a personal capacity.
Thank you and farewell: life and love in palliative care nursing
Authors: Laughton Ruth
Published: May 2014

When I joined IJPN nearly 3years ago I had little idea of how it would work its way under my skin and change my outlook on life. Coming from a non-nursing background I was keen to learn about what nurses did, who they were and how the journal could help them in their work. I have learnt a lot about nursing, seen the journal expand but most of all, I have been exposed to a huge array of lives and living, of love and caring at the end of life.
What makes dying children different?
Authors: Hinds Pamela S , Drew Donna
Published: May 2014

Children and adolescents experience illness and dying – their own and that of others – differently. Certain generalities include that young children focus on concerns about physical symptoms, separation from loved ones and disruption to routines. Older children and adolescents have concerns about altered body image, interruption to peer relationships, increased dependency at a time of developing autonomy, with the reality of the finality of what death means. They also worry about their family and feel guilty about what may have happened during their illness. The differences that exist seem to be influenced by whether the dying child or adolescent experienced a chronic or an acute illness that becomes fatal quickly.
Do pilot studies have any value in research?
Authors: Nyatanga Brian
Published: May 2014

When pilot studies are conducted as part of a research process, they can be useful in many ways. For example, improving the internal validity of a questionnaire or scale, assessing the feasibility of the main study, establishing whether the sampling frame and technique are effective and giving feedback on the logistics of data collection. However, there are limitations, particularly when the researcher makes inaccurate assumptions based on the pilot data. The fact that a pilot was conducted does not mean success in the main study and, in some cases, pilot data gets included in the main study, thereby, creating contamination.
Sedation without hydration can seriously damage your health
Authors: Craig Gillian
Published: May 2014

Sedation without hydration came to my notice in 1990. I felt that I had witnessed euthanasia and was dismayed. Others have expressed similar concerns and have called the practice ‘terminal sedation’ or ‘slow euthanasia’ (Billings and Block, 1996; Shea, 2004).
Multiple myeloma resources for patients and health professionals
Authors: Smyth Dion
Published: May 2014

Multiple myeloma represents about 1% of the total number of cancer cases, but 15% of haematological malignancies. It is an incurable disease with a chronic and relapsing course. Therefore, the treatments typically combine disease modifying and palliative care approaches. This month’s web words completes the review of some of the websites associated with the commonly occurring haematological malignancies.
Implementation of the Adelaide Hills Palliative Care project
Authors: Rawlings Deb , Hatton Ian , McDonald Keith
Published: May 2014

The Rural Palliative Care Program (RPCP) is currently being implemented in eight pilot sites across Australia, under the banner of the National Palliative Care Program. It is one of a number of initiatives commissioned by the Department of Health and Ageing that are designed to achieve the goals of the National Palliative Care Strategy. Specifically the RPCP is testing service components that aim to improve access to palliative care for people living in rural and remote communities. With facilitation from the Australian Divisions of General Practice (ADGP), each project and the program as a whole, is undergoing a formal evaluation by the Centre for Health Service Development (CHSD), University of Wollongong. A key question being investigated is whether any systemic improvements in palliative care delivery are sustainable beyond completion of the 3-year program. This paper gives the background to the RPCP. The Adelaide Hills Palliative Care Project is discussed as an example of how strategies are derived and applied in order to test key service components pertinent to the delivery of palliative care in a rural setting.
Avoiding complacency in palliative care
Authors: Kelly Daniel
Published: May 2014

I have been reading sections of Ciceley Saunder’s Selected Writings 1958–2004 (Saunders, 2006). It is a remarkable collection about her life and her belief in the inherent worth of helping and supporting those facing death. Its main focus, naturally, is on the emerging role of the hospice approach to palliative care and the need for individual suffering to be at the heart of interactions with patients and families. Saunder’s returns again and again to an encounter with one patient dying from cancer in 1948 that seemed to be the catalyst for her life’s work. She emphasises the need to provide the physical and emotional space to allow people to come to terms with the inevitability of their death.
Dying at home: a real patient choice?
Authors: Hill Sarah
Published: May 2014

In the UK, palliative care has recently been at the forefront of much debate. Over the last few months, we have witnessed the forming of the all-party parliamentary group ‘Dying Well’ which aims to promote good-quality end-of-life care for everyone. We have also seen the publication of the White Paper Our Health, Our Care, Our Say: A New Direction for Community Services (Department of Health (DH), 2006) which commits to more investment by the government in end-of-life care and support for hospice at home services.
Exploring Aboriginal peoples’ experience of relocation for treatment during end-of-life care
Authors: McGrath Pam
Published: May 2014

Aim To explore indigenous peoples’ experience of relocation for medical treatment during end-of-life care.

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 Relocation for indigenous peoples is a frightening experience. There are a myriad of fears including: the fear of leaving home, especially for people who had never been away from their homelands; the fear of disempowerment associated with leaving the support of family networks; fears about hospital environments and ‘high-tech’ treatments; fear of cultural alienation for familiar foods and ways of being; fear of travel; fear of loneliness; fear of language and communication barriers; financial fears; and fear of dying away from the homeland.

Conclusion The findings demonstrate the strong need for building-up local palliative care services and raise significant questions about the cultural appropriateness of the Western biomedical rationale for relocation during end-of-life care.
Exploring the role of community palliative care nurse specialists as educators
Authors: Husband Jacqueline , Kennedy Catriona
Published: May 2014

In the UK the clinical nurse specialist role (CNS) has evolved in an uncoordinated manner resulting in a broad job remit, with clinical, managerial, research and educational elements. CNSs working in specialist palliative care are expected to contribute to the delivery of education but many have received no formal training to support them in this aspect of their role. There has been limited research exploring the role the community palliative care CNS in providing education, making this study timely.

Aim: The aim of this study was to explore the role of the community palliative care CNS as educator.

Method: Hermeneutic phenomenology, using semi-structured interviews with a convenience sample of eight community palliative care CNSs was the approach used. Formal ethical approval was obtained and all participants provided written informed consent. Colaizzi’s framework for analysis provided a structured and transparent approach to data analysis. A summary of the findings were verified by the participants to enhance the credibility of interpretation presented here.

Results: Data analysis identified three main themes; conflict of expectations, credibility as a teacher and making the education role work. This study highlighted a team approach may address the conflict of expectations between the role specifications and practice reality.

Conclusion: The CNS has a role in education. However for some CNSs, providing informal education rather than formal education may be appropriate. If the community palliative care CNS provides formal education, they require the knowledge and skills to deliver it effectively. The role of the CNS in palliative care education in the community should respond to personal, professional and local needs.
The pain of residents with terminal cancer in USA nursing homes: family members’ perspectives
Authors: Berry Patricia H
Published: May 2014

Cancer pain continues to be poorly treated despite efforts aimed at improvement. This causes considerable distress to both patients and their families. The purpose of this research is to explore the perspectives of family members of nursing home residents with terminal cancer, about pain and pain management. Participants who believed their pain could be better managed viewed their family member’s pain and illness differently than those who believed the pain could not be managed better. The family members who believed better pain management was possible often took on the role of advocate and saw to it that the pain was addressed. Those who believed that their relative did not have adequate pain relief, but felt better management was not possible, expressed no concerns about this aspect of their relatives’ care; they could not separate their relatives’ pain from their illness. The interpretation and presence of adequate pain management is critical for family members to construct meaning around their relative’s pain. When family members do not believe that the pain can be managed any better, this acts as a barrier to the resident’s access to adequate pain management.
Book reviews
Authors: Larkin Philip J
Published: May 2014

This book offers an interesting approach to the practical, ethical and philosophical question which apply to the care of children at end of life. More specifically, the author, a renowned US paediatric psychologist, provides an insight into the impact of caring for dying children from the perspective of the clinicians involved.
Parental perspectives of initial end-of-life care communication
Authors: Hendricks-Ferguson Verna L
Published: May 2014

Significance: An important research priority is to explore parents’ perspectives of the introduction of end-of-life care (EOL) options for a dying child by their health care provider.

Aims: To examine parents’ perspectives of: (1) the timing and method used by health care providers to introduce EOL options for their child and (2) what their preference would have been regarding the selected time and method to introduce EOL options.

Design: Retrospective, descriptive study.

Analysis: Qualitative method, content analysis.

Results: The retrospective study design gave parents the ability to reflect on what was helpful or harmful when health care providers introduce or discuss palliative and end-of-life care options for the dying child. Important suggestions were shared regarding when this information should be discussed with the parents of a child with a life-threatening illness.
Change in the NHS: looking to the future
Authors: Cooley Candy
Published: May 2014

Throughout our lives, we all face a series of changes and challenges. Sometimes, change is seen as a threat to stability, confidence and good practice, but it can also be viewed as an opportunity to develop, explore and improve practice. In the health care environment, the only certainty is that as knowledge grows and current practice is challenged, change must take place.
HIV and nutrition: online information and resources
Authors: Smyth Dion
Published: May 2014

Increased access to effective prevention programmes and the provision of promising antiviral treatments and proper palliative measures have lessened the global impact of HIV infection. Nevertheless, over 40 million people worldwide are living with HIV and over three million people die of HIV- and AIDS-related conditions each year. This month’s Web Words examines websites that address aspects of nutrition and HIV.
A system of electronic records developed by a childrens hospice
Authors: Menezes Antoinette , Esplen Polly , Bartlett Paul , Turner Bridget , Keel Mike , Etherington Veronica , Conisbee Elaine , Plant Antonia , Haslam Val , England Julie
Published: May 2014

This paper describes the development, implementation and dissemination of an electronic data collection system for children’s hospices in the UK. In 1999, CHASE Hospice Care for Children (CHASE) began providing support for life-limited children and their families in their own homes across south-west London, Surrey and West Sussex. CHASE community team is multidisciplinary and original members of the team had to create all of the necessary administrative systems for collecting and storing information about referrals and care provided to children and their families. The community team had the foresight to record activity statistics from day one of the service. The team worked together to identify information routinely collected that could usefully be stored on a computer database and a simple solution was created for this purpose using Microsoft Access version 2. CHASE was in a privileged position because the commitment to use information technology came from people providing care to children and their families.
End-stage renal disease: online information and resources
Authors: Smyth Dion
Published: May 2014

Palliative services traditionally herald from cancer care; however, the provision of more inclusive services that incorporate non-malignant conditions, such as end-stage renal disease, is increasing. This month’s Web Words looks at sites that provide more information about diseases of the kidney and the care of patients who suffer from them.
Palliative care for all? A review of the evidence in community hospitals
Authors: Steers Julie , Brereton Louise , Ingleton Christine
Published: May 2014

The provision of palliative care in the UK has traditionally focused on people with cancer. People who are elderly, live in rural areas or have diagnoses other than cancer often have difficulty accessing palliative care services. Community hospitals could be important for those groups currently under-served. A literature review was conducted to determine the role played by community hospitals in the provision of palliative care in the UK. Papers were identified using a keyword search of six electronic databases and hand search of five journals. Fifteen papers were identified according to inclusion and exclusion criteria. Findings indicate that many community hospitals in the UK already have the resources to counter inequalities in access to general palliative care. Much of the evidence uses quantitative methods based on small or non-representative samples and retrospective data collection approaches. Insufficient information about the populations involved meant that findings could not be fully interpreted. More prospective research using qualitative methods involving patients, carers and nurses is required to fully understand the complexities of providing palliative care in this setting.
Liver disease: online information and resources
Authors: Smyth Dion
Published: May 2014

Liver disease refers to any disorder that disturbs or disrupts liver function. This includes many diseases, some of which are genetic, some acquired, some due to viruses and others to bacterial parasites. Worldwide, the burden of disease is great, accounting for substantial morbidity and mortality, and impacting greatly on the wellbeing of many families. As palliative care broadens in accessibility, global services will increasingly encounter more cases of this disease. This month’s Web Words examines websites that help to inform professionals and public alike about the experience of living with, or dying from, liver disease.
Palliative care in nursing homes: a comparison of high- and low-level providers
Authors: Hodgson Nancy A , Lehning Amanda J
Published: May 2014

The purpose of this study was to explore staff perceptions and concerns about the use of palliative care services in the nursing home setting. Six administrators from nursing homes were purposively selected for key informant interviews. Four common themes emerged, including issues related to the culture of care, the model of care, the relationships with hospice partners, and the role of staff. Recognition of staff perceptions is an important first step in improving the utilization of palliative care services. Staff insight provided clarification related to impediments in promoting a culture of care that was person-centered and relationship-based. We conclude by identifying the solutions for raising the level of dialogue to promote palliative care practice in the nursing home environment.
Japanese beliefs: online information and resources
Authors: Smyth Dion
Published: May 2014

The month of November marks two Japanese national holidays, Niinamesai, the ancient Shinto thanksgiving celebrated by the Imperial family, and Shichigosan, the festival of thanks for children. It also observes three noteworthy events in the Bahai faith and calendar, including the birth of the founder of the religion, Baha’u’llah on the 12th. This month’s web words, therefore, looks at belief systems that are significant to a substantial number of the world’s population.
The emperor’s new clothes
Authors: Becker Robert
Published: May 2014

What is there in a name? Identity, purpose, reputation. Clearly, names are important and a familiar name will bring forward a visual image, or a certain individual who represents the qualities and values that the name embodies.
Islamic beliefs: online information and resources
Authors: Smyth Dion
Published: May 2014

‘Islam’ means ‘submission to the will of God’ and adherents to this world belief now number well over 1 billion followers, with Muslims constituting the majority population primarily in over 50 Eastern countries. Nevertheless, significantly-sized Muslim communities live in most Western countries, contributing to the cultural, spiritual, religious and political activity of those areas, and so an understanding of at least the basic tenets of this belief system may positively influence care and seems especially relevant when fear, distrust and other prejudice is often seemingly easily applied to this faith.
Religious festivals: online information and resources
Authors: Smyth Dion
Published: May 2014

Palliative care integrates awareness, knowledge and understanding of how the psychosocial and spiritual domains may influence the assessment and management of care needs. Over one fifth of the world’s population profess a spirituality that entails practice of a Christian faith. At this time of year Christians celebrate ‘Easter’, which was once a festival originally derived from the goddess Oestre, a Teutonic fertility goddess whose divinity was celebrated in the spring. The worldwide web reveals views that Oestre has also been described as etymologically linked to the derivation of the word ‘oestrogen’, although this is contested. What is not challenged is the convenience and helpfulness of the internet to increase our knowledge of religious festivals to better facilitate our care.
Diagnosis and management of malignant spinal cord compression: part 2
Authors: Drudge-Coates Lawrence , Rajbabu Krishnamoorthy
Published: May 2014

Malignant spinal cord compression (MSCC) is a particularly challenging area of cancer care where early diagnosis and expert multidisciplinary care and rehabilitation are paramount in optimising quality of life for the affected individual. The effects of MSCC can range from minor sensory, motor and autonomic changes to severe pain, and complete paralysis that significantly affects the remainder of a patient’s quality of life. When caught early, the symptoms of MSCC can be prevented, minimised or possibly reversed. However, failure to recognise the condition and its serious nature, together with limited awareness of the importance of early referral for treatment, can result in irreversible paralysis. Therefore, it is essential that nurses providing clinical care for these at-risk patients are able to identify early symptoms, and undertake a thorough patient history and examination; educating the patient and their family about the signs and symptoms of MSCC that need to be reported as soon as they occur.
Correspondence
Authors: Vocht Hilde de
Published: May 2014

It is pleasing to note that our discussion and debate on euthanasia and physician-assisted suicide (PAS) has provoked further discussion from colleagues, and we thank Gannon and Garland for being the first to respond to our article (de Vocht and Nyatanga, 2007).
Religious beliefs: online information and resources
Authors: Smyth Dion
Published: May 2014

The Sikh religion is ranked as the world’s fifth largest, according to the number of professed adherents to that faith, with over 20 million followers worldwide. This month marks the martyrdom of Guru Arjan Dev, the fifth Sikh guru who completed the compilation of the previous Guru’s writings into the Guru Granth Sahib, the Sikh Holy Scripture. The book was different in that its content included Hindu and Muslim compositions, which were consistent with the tenets of Sikhism; perhaps best illustrating the religions emphasis on the equality of man and devotion to one God.
Getting it right under pressure: action research and reflection in palliative nursing
Authors: Taylor Beverley , Bewley Jennifer , Bulmer Beth , Fayers Lisa , Hickey Alan , Hill Loretta , Luxford Catherine , McFarlane Jenny , Stirling Kate
Published: May 2014

This article describes a qualitative research project using a combination of reflection and action research. Eight experienced registered nurses identified their need to ‘get it right under pressure’ in their work in palliative care. Participants collaborated in generating and evaluating an action plan to enhance the likelihood of getting palliative nursing care right, under pressure, more often.
‘Catching’ the concept of spiritual care: implementation of an education programme
Authors: Hickey Deb , Doyle Carolyn , Quinn Sharon , O’Driscoll Peter , Patience Dawn , Chittick Karen , Cliverd Angie
Published: May 2014

This article will outline the achievements of a project group as they translate the recommendations set out in the UK National Institute for Health and Clinical Excellence (NICE) guidance on spiritual care provision in clinical practice (NICE, 2004). It was evident that there was an opportunity to offer a comprehensive, competency-based course that developed recognition of the spiritual care needs of patients with cancer and their carers. A two-day experiential programme was devised that included role play, the evidence base, theory and fun, resulting in the acquisition of tacit and explicit knowledge. The course was based around the following tenets:

Spiritual issues are broader than religious ones and include a quest for meaning in the illness, resolution of old conflicts and integration of past life experiences (Barraclough, 1994) We cannot know others except by knowing ourselves (Carrither, 1992).

It is hoped that by providing holistic training that stimulates the growth of an individual’s spirituality and allows them to identify their spiritual needs, we can increase understanding, awareness, confidence and knowledge in ways that can have a real application within the workplace, enabling spiritual care provision to become realistically integral to care.
Diversity and dilemmas in palliative care nursing
Authors: Costello John
Published: May 2014

In the last 20 years, palliative care nursing has developed like no other health-related specialism. This expansion of interest has brought with it a number of challenges and dilemmas associated with a professional demand to diversify provision. The burgeoning international literature on palliative care reflects the increasing focus placed on the care of patients and support given to families experiencing life-limiting illness.
Using play therarpy in paediatric palliative care: listening to the story and caring for the body
Authors: van Breemen Camara
Published: May 2014

To be truly comprehensive, palliative care for children must address more than pain control and symptom management. Holistic care also encompasses attention to the child’s relationships, hopes, fears and wishes. Parents and caregivers of dying children are generally the primary decision-makers in the child’s care and can find the transition from active, to palliative care, particularly difficult. Nurses who understand the parents’ perspective can better support them. Children reveal their hopes and fears through play. By being attuned to symbols and themes in play, nurses can better interpret the dying child’s journey. Nurses can facilitate communication and connection between parents and child and thereby promote healing during the dying process.
To find inner peace: soft massage as an established and integrated part of palliative care
Authors: Beck Ingela , Runeson Ingrid , Blomqvist Kerstin
Published: May 2014

The aim of this study was to demonstrate how people with incurable cancer experienced soft massage in a palliative care setting in which massage was used as an established and integrated part of the nursing care. To reach a deep understanding of the experiences of receiving soft massage a qualitative method with a phenomenological approach was chosen. The study was based on interviews with eight patients in an advanced home care setting who had all received soft massage as part of their daily care. Soft massage was experienced by the informants as a way to find inner peace. During the massage the patients felt dignified, while memories from past massage sessions were about becoming free. These experiences of dignity and freedom brought hopes for the future. The conclusion is that soft massage ought to be offered in the ordinary palliative care. More research is needed to understand what is needed to integrate and establish methods such as soft massage in the palliative care.
Book Reviews
Authors: Brown Hilary
Published: May 2014

This is a very authentic and comprehensive commentary on the role of the palliative care clinical nurse specialist in the community. Using case stories the author illustrates the range and variety of situations where the community palliative care nurse specialist can make a contribution although the array of skills required to perform the role effectively is implied rather than explicit. The point is made, however, that these practitioners are specialists both in community and palliative care nursing and are often very successful in the help they provide but there are, on occasion, situations that cannot be helped. Most of the case stories are of patients with cancer but there are glimpses of diagnoses other than cancer throughout the book.