bluuebunny/crossref_metadata_2025 huggingface dataset:
Student nurses’ knowledge of palliative care: evaluating an education module
Authors: Arber Anne
Published: May 2014

There is evidence that education in palliative care in the UK is somewhat patchy and that this important area of health care should be given a greater emphasis in the nursing curriculum. This article describes an evaluation of a palliative care module taken by a group of third year student nurses. The effect of the module was evaluated using the palliative care quiz for nursing (PCQN), administered at the beginning and at the end of the module. The results demonstrate that the students significantly increased their understanding of aspects of pain and symptom control. In particular, they became knowledgeable about adjuvant therapies and opioid use. In contrast to previous studies, the students rejected the ‘fear of addiction’ associated with opioid use. Deficits in knowledge included side-effects of codeine, use of sedation and the use of placebos. The results support the need to develop a compulsory module in palliative care that is formally assessed and includes a palliative care placement. This would enable comprehensive and systematic coverage of palliative care in the undergraduate nursing curriculum.
Improving palliative care through effective communication
Authors: Wallace Patricia R
Published: May 2014

Effective communication in palliative care is instrumental in the development of the therapeutic relationship that should exist between patients and nurses, and the importance of it is well recognized by nurses working in this specialist practice area. This article examines the reason behind the need for effective communication, identifies systems of communication and explores the influence and value of contemporary communication theories and models in palliative care. It recommends that palliative care nurses develop a framework which will facilitate and give structure to the interview process with the aim of alleviating anxieties, encouraging situational control and promoting quality of life for patients.
The importance of funding palliative care education: a look to the future
Authors: Chippendale Simon
Published: May 2014

This article outlines the position statement agreed by the Midlands Palliative Care Teachers’ Professional Forum. Written by a member of the group, it includes suggestions from other members and was submitted for publication before the recent announcement of funds being available for palliative education for district nurses. The article highlights the challenges facing the adequate funding of specialist palliative care education and, in particular, for education departments within independent hospices. The statement recognizes the sensitive nature of subjects that ought to be included in palliative care education. Emphasis is placed on the provision of holistic multiprofessional and uniprofessional courses dedicated to enhancing the quality of palliative care. The article confirms the commitment of palliative care educationalists to this end and looks to continued commitment of adequate funding from NHS trusts and regions in supporting existing palliative care education and its ongoing development in response to clinical need.
Effective palliative care for minority ethnic groups: the role of a liaison worker
Authors: Jack Catherine M , Penny Liz , Nazar Wali
Published: May 2014

As the issue of equality of access to health-care services becomes more important, there is increasing concern that specialist palliative care services in the UK are under-used by minority ethnic groups (Haroon-Iqbal et al, 1995; Karim et al, 2000). Research into the provision of such services for black and minority ethnic communities identified a number of factors that contribute to a perceived low take-up of services (Hill and Penso, 1995). A strategy to promote ethnic and racial sensitivity in palliative care service delivery, and policies to improve access to, and take-up of, services was recommended. This article presents the important elements relating to equal access to specialist palliative care and the provision of culturally sensitive services, and examines the role of the Macmillan Ethnic Minorities Liaison Officer in the Bradford community palliative care team.
Holism and a health-promoting approach to palliative care
Authors: Buckley Jenny
Published: May 2014

This article draws on Illich’S definition of health and explores the perspective of facing death as a process of adaptation. Research into psychoneuroimmunology is discussed. This focuses on using one’S own resources, which the author sees as a central tenet of holism. A key aspect of this approach is not only empowerment of patients, but also of nurses, allowing them to be self-aware, self-valuing and to practice self-care. The article mentions an educational strategy to encourage a health-promoting approach. This course uses the concept of holism as a framework for teaching and practice of palliative care.
Self management in palliative care
Authors: Corner Jessica
Published: May 2014

To propose ‘self management’ as an important new direction for palliative care may seem somewhat paradoxical. Just at the time when we as nurses find ourselves needing to do more and more, taking over the handling of normal activities and managing the most intimate of bodily processes for people who are dying, here I am saying that ‘self management’ is the new ‘letting go’. Before you say ‘rubbish’, let me explain.
The importance of social-historical context
Authors: Berry Patricia
Published: May 2014

I strive to learn from every patient and family member I meet, as I believe these people are our best teachers. I am struck, more and more, by the influence of the social and historical context surrounding us all. Serving on the editorial board of International Journal of Palliative Nursing has reinforced this notion. Each month I peruse the contents and am impressed by the diversity and creativity of colleagues throughout the world. However, although our work is similar, it takes place in a wide range of cultural, social and historical contexts.
Living on the outside looking in: a theory of living with advanced breast cancer
Authors: Davies Maggie , Sque Magi
Published: May 2014

Much of the literature on women’S experiences of breast cancer relates to diagnosis and initial treatment. The aim of this research was to develop a theory to explain the meaning and experience of living with advanced breast cancer. A grounded theory approach was used and ten women under the care of one hospice explained their experiences during semi-structured interviews. The findings suggest that there are significant issues and difficulties facing women with advanced breast cancer, culminating in feelings of isolation and the experience of living with the fear of advancing disease. A theory, living on the outside looking in, was developed to explain the experiences of the participants. This integrates the following five categories: reconciling a different me; time bomb; media effect; professional waning; and rescuers. The category, reconciling a different me, was identified as the core variable and had an explicatory relationship to the other four categories. The findings raise issues regarding appropriate support.
Pressure ulcer prevention in palliative care 1: results of a UK survey
Authors: McGill Maria , Chaplin Jacquelyn
Published: May 2014

Pressure ulcer prevention is an important aspect of palliative care nursing. This article reports part 1 of the results of a postal questionnaire survey of all 206 palliative care inpatient units listed in the St Christopher’S information service hospice directory. The key areas surveyed were current pressure ulcer prevention policies in use in UK palliative care units and current practice in relation to pressure ulcer risk assessment. Issues arising from these results are also discussed: the key elements of a pressure ulcer policy and the role and timing of pressure ulcer risk assessment.
Palliative sedation therapy: a review of definitions and usage
Authors: Beel Alexandra , McClement Susan E , Harlos Mike
Published: May 2014

Palliative care clinicians are faced with the challenge of managing a multitude of complex symptom combinations in patients for whom they care. Although many symptoms respond favourably to established protocols, others may remain refractory to such intervention. It is within the context of trying to manage such symptoms that the issue of palliative sedation therapy arises. The use of sedation in such circumstances is one that has prompted considerable debate in the palliative care literature. Discourse has been hampered, however, by a lack of consensus regarding the meaning and intent of palliative sedation therapy, when it should be used clinically and how it is to be achieved pharmacologically. There is a dearth of research examining the meanings ascribed to its use from the perspective of patients, families, and health-care providers. This article will provide an overview of these identified issues, and provide suggestions for ways in which palliative sedation therapy might further be examined and understood.
Culture, palliative care and multiculturalism
Authors: Nyatanga Brian
Published: May 2014

The frequently asked question, ‘Why do minority ethnic groups not access palliative care?’ needs closer analysis. This article sets out to revisit the context and principles of palliative care and discuss why palliative care services are not accessed equally by all cultural groups in western, particularly UK, society. The conceptual basis of culture, together with cultural diversity, will be discussed to foster greater understanding of multiculturalism with a view to offering recommendations for the provision of culturally sensitive palliative care. These recommendations will seek to be challenging but realistic, both for practitioners providing such care and for educationalists disseminating ‘knowledge’. I will highlight what I believe are the challenges of providing palliative care that is acceptable to minority ethnic groups based on personal experience and literature, and emphasize that these challenges should be seen as potential opportunities. It is hoped that this article will set a platform for honest and open discussion about the way forward in providing culturally sensitive palliative care for minority ethnic groups. I will pose a challenging call to all members of minority ethnic groups to adopt a more proactive approach to their own care by preparing themselves to be in an influential position in palliative care provision through academic and clinical endeavours.
Families’ experiences of the last office of deceased family members in the hospice setting
Authors: Kwan Cecilia wai man
Published: May 2014

This study aimed to describe the experience of family members who had been involved in the last office of a deceased relative and explored what the participation meant to each individual. Undertaken in Hong Kong, data were collected through semi-structured interviews of six bereaved family members who had participated in the procedure. Five major themes emerged with regard to the meanings of the participation: a sense of completeness; a continuation of relationship; fulfilment of responsibility; conveyed messages of gratitude and respect; and an enhancement of the acknowledgement of the reality of death. The most significant part of each individual’S experience is the humanistic approach of care throughout the procedure including the attitude of the nurses.
Massage and aromatherapy massage: nursing art and science
Authors: Buckley Jenny
Published: May 2014

This article begins by reviewing the place of complementary therapies in palliative care from the perspective of UK professional organizations, namely the Nursing and Midwifery Council (NMC) (formerly the United Kingdom Central Council for Nursing, Midwifery and Health Visiting (UKCC)) and the British Medical Association (BMA). It then reviews recent research on the use of massage and aromatherapy massage in palliative care and comments on their credibility and implications, thereby addressing nursing science. The art of nursing is explored through four case histories where massage was used intuitively when words were difficult or seemed inadequate. To conclude, by focusing on the therapies provided by a UK hospice, there is consideration of the practicalities of implementing massage and aromatherapy massage in a specialist palliative care unit.
Impact of the Powys Macmillan GP clinical facilitator project: views of health-care professionals
Authors: Noble Bill , Hughes Philippa , Ingleton Christine , Berg Jane , Clark David
Published: May 2014

The UK charity, Macmillan Cancer Relief, commissioned a 3-year pilot project employing 12GP clinical facilitators (GPCFs). The aim was to raise the standard of generalist palliative care, provide extended clinical palliative care and provide a coordinated framework for commissioning specialist palliative and cancer care in Powys, rural Wales. As part of the comprehensive evaluation, surveys of GPCFs, GPs, district nurses and community hospital nurses were undertaken in order to record changes in palliative care activity, specialist palliative care services and training needs. Services providing 24-hour nursing and social services were perceived as in need of development. Referrals to Macmillan nurses increased by 40% and GPs reported that time spent on palliative care increased, on average, from a quarter of a day to half a day per week, although district nurses reported a reduction in palliative care activity. The majority of nurses thought that the GPCFs contribution was important. The use of local palliative care guidelines increased significantly among district nurses by the end of the project.
Dying at home: a care pathway for the last days of life in a community setting
Authors: Pooler Jacqueline , McCrory Fiona , Steadman Yvonne , Westwell Helen , Peers Sue
Published: May 2014

The Cancer Nursing Strategy (Department of Health (DoH), 2000a) expects nurses at senior level to lead the way in improving the organization and delivery of cancer care. Lack of forward planning can be a feature of community palliative care, and may lead to inappropriate crisis admission in the last days despite patients and relatives expressing a wish to stay at home. This article attempts to demonstrate how, through collaboration and effective team working, issues and/or problems encountered in the last days of life were managed by developing and promoting a care pathway for the last days of life. Although based on Ellershaw’s pioneering work, this pathway was developed specifically for use in the community to reflect and address the particular problems encountered in this setting when caring for dying patients.
The palliative care needs of ethnic minority patients attending a day-care centre: a qualitative study
Authors: Diver Fiona , Molassiotis Alexander , Weeks Les
Published: May 2014

The aim of this study was to assess the culture-specific palliative care needs of ethnic minority patients. Qualitative semi-structured interviews were conducted using elements of phenomenology with four ethnic minority patients who were attending a day-care centre. Although the aim was to assess cultural needs, it was found that the patients expressed basic human needs rather than culture-specific ones. The theme of acculturation, where patients ‘fit in’ with the dominant culture, was predominant. This suggests that stereotypical cultural care may not always be appropriate, as micro-cultures and individual diversity within cultures exist. These should be explored in the cultural assessment of ethnic minority patients.
Reflection on implementing a care pathway for the last days of life in nursing homes in North Wales
Authors: Jones Alwena , Johnstone Ros
Published: May 2014

North Wales, in the UK, is a popular scenic location for retirement. An above-average concentration of nursing homes leads to a high number of residents with palliative care needs. UK nursing homes are usually privately owned and provide nursing care for elderly clients unable to maintain independence in their own home. Increasingly, nursing home residents are being referred to as ‘patients’ rather than ‘clients’, reflecting the fact that individuals are being admitted in a more acute phase of their illness. The length of stay is now often days or weeks rather than months or years.
Changing practice: use of audit to change oral care practice
Authors: Kinley Julie , Brennan Sonya
Published: May 2014

Although oral problems are common in palliative care, oral care can be a neglected area of practice. This article discusses the introduction of an oral care protocol and standard in one palliative care unit. The project used audit tools developed by Lee et al (2001) and involved a survey of the oral care knowledge of nursing and medical staff, and a retrospective survey of current practice using 50 sets of patient’s notes. A standard and documentation were developed with the aim of ensuring oral care was both consistent and in line with best practice. Training was provided to all staff within the unit. Three months later oral care practice was audited. The results suggested improvement in all aspects of oral care practice. Dissemination of oral care documentation and training across the trust is underway. This article describes the processes used, highlighting the importance of assessment in oral care and the need for teamwork in rolling out changes both within and beyond a single unit.
Home care versus hospital care in patients with multiple myeloma treated with pamidronate
Authors: Smith Alastair G , Soutar Richard L , Schey Steven , Andrews Christopher D , Baister Elizabeth R , Bilbrough Carol , Connelly Marie , Joyce Ann , Child J Anthony
Published: May 2014

Long-term bisphosphonate therapy has been shown to offer clinical benefit in the management of multiple myeloma. This study sought to explore the feasibility and potential advantages of monthly home-based intravenous infusions of pamidronate in patients with multiple myeloma. In a prospective crossover, multicentre trial, 37 patients were randomly allocated to receive 3 months of treatment with pamidronate given in the home followed by 3 months of treatment given in hospital or vice versa. Results from a patient preference questionnaire indicated most patients preferred treatment at home. Quality-of-life measurement was undertaken using the EORTC QLQ-C30 questionnaire. The results indicated a small, generally consistent, although not statistically significant, trend in favour of home care treatment. Extra nursing specialist time was required for home therapy. Home therapy with pamidronate in patients with multiple myeloma appeared feasible and safe and was preferred by patients in this study.
Palliative care stress in a UK community hospital: evaluation of a stress-reduction programme
Authors: Bruneau Benjamin MS , Ellison George TH
Published: May 2014

In this study the Nurses Stress Scale and Nurses Coping With Stress Questionnaire were used to investigate work-related stress in 18 nurses providing palliative care in a UK NHS community hospital. These instruments were administered twice before and twice after a stress-reduction programme. In-depth qualitative interviews were conducted before and after the programme and a 12-item questionnaire was used to assess whether the nurses found the programme useful. The findings indicated that most nurses did not find their work particularly stressful, and most felt well-equipped to cope with palliative care stress. However, the interviews identified a small group of nurses who felt ill-equipped to cope and routinely found their work stressful. The principal sources of support for both groups of nurses were family and friends at home rather than colleagues at work, and most felt there was little opportunity to share experiences and feelings with their colleagues. Likewise, few (only 33%) had found an opportunity to practice the relaxation skills they had learnt during the stress-reduction programme. This might explain why there was no evidence of any general improvement in stress and coping scores following the stress-reduction programme. Although the nurses enjoyed the programme and found it helpful, such programmes need to tackle contextual barriers to coping with stress as well as improving the individual coping skills of staff.
One palliative care nurse’s view of euthanasia: a social movement reflective of a self-serving generation
Authors: Milliken Jan
Published: May 2014

The global debate on euthanasia continues to attract interest from those willing to enter this arena of ethical challenge. I believe those who work in palliative care are in a pivotal place to comment on the issue.
Breaking Through: improving equality in the NHS workforce
Authors: Nyatanga Brian
Published: May 2014

The NHS is the largest employer of black and minority ethnic (BME) staff in the UK. Other health-care systems around the world may also be major employers of ethnic minority groups. The Department of Health (2003) has highlighted the role of these staff and discussed the progress being made in promoting equality and diversity in the workforce. With growing multi-ethnic communities, the report suggests that there remains an imbalance in the workforce and the levels at which such staff are working.
The euthanasia debate: religious aspects
Authors: Smythe Dion
Published: May 2014

The provision of relief from suffering is preserved in the principles and practice of palliative care. A patient’s request for assistance in ending his or her life presents the health-care professional with a moral dilemma. This final look at the euthanasia debate offers a review of some of the major religions’ views on the topic, as found on the web.
Learning disability and palliative care
Authors: Cardy Peter
Published: May 2014

Around 1.2 million people in the UK have mild or moderate learning disabilities and a further 210000 have severe or profound learning disabilities (Department of Health, 2001). Their longevity has risen even faster than that of the general population. With individuals having the same age-related diseases that afflict the rest of the population and more multiple pathologies, the need for palliative care is becoming routine, not rare.
Surprised endings: the dying of people with learning disabilities in residential services
Authors: Todd Stuart
Published: May 2014

Continuing the theme of caring for vulnerable populations from January, Stuart Todd reflects on the care of people with learning disabilities at the end of their lives.
Evaluation of training on the use of Graseby syringe drivers for rural nonspecialist nurses
Authors: Hayes Anne , Brumley David , Habegger Lawrence , Wade Mary , Fisher John , Ashby Michael
Published: May 2014

Aim To assess the impact of a training programme on nurse confidence in: setting up the Graseby syringe driver (GSD); explaining the GSD to patient and family; setting the rate on the GSD; putting appropriate type and dose of drugs in the GSD.

Study design Training programme with pre-training, post-training and follow-up questionnaires.

Sample and setting Palliative care nurse consultants presented half-day training sessions to 270 non-specialist nurses throughout the rural Grampians Health Region of Victoria, Australia. Nurses were from rural acute and sub-acute care settings, aged care facilities, and district nursing and nurse education services.

Measurements Demographic details of participants, previous experience and training with GSDs, comparative analyses of the four confidence parameters and participants’ assessment of interest, new knowledge and usefulness of the training programme.

Results Increases in confidence levels were found in participating nurses in relation to each of the four confidence parameters. A follow-up survey tested residual benefit 3months after the training programme. Statistically significant variations were found in nurses’ confidence levels in relation to frequency of use.

Conclusions Regular use of, and/or refresher sessions about the GSD are recommended to maintain optimum confidence, effective and safe nursing use of the GSD in palliative care.
Paediatric palliative care in the UK: past, present and future
Authors: Price Jayne , McNeilly Patricia , McFarlane Marisa
Published: May 2014

Throughout the last 10 years vast changes have occurred in the care provision for children with life-limited illnesses and their families. In this comment piece we reflect on the development of paediatric palliative care in the UK, briefly explore some of the challenges inherent within this field of practice and consider the way ahead in paediatric palliative nursing.
How basic is palliative care? The debate continues
Authors: Berry Patricia
Published: May 2014

Reflecting on Harmala Gupta’s article from my perspective as a US citizen, college of nursing faculty, and advanced practice palliative care nurse, I could not separate my thinking from the issues innate in the US health-care system that, in my opinion, limit access to palliative care, and really healthcare in general. My thoughts and response, then, are presented, in this context.
Supporting patients who have intellectual disabilities: a survey investigating staff training needs
Authors: Tuffrey-Wijne Irene , Hollins Sheila , Curfs Leopold
Published: May 2014

Aims This article reports on a small exploratory survey aimed at establishing the perceived training needs of palliative care staff related to supporting people with intellectual disabilities.

Methods Questionnaires were collected from a sample of 46 palliative care staff. Respondents were asked to describe ‘worrying issues’ about supporting a person with intellectual disabilities. Answers were analysed using content analysis.

Results Most respondents (37, 80%) highlighted communication as a concern. Other major issues included assessment and symptom control, patient comprehension, empowerment and ethical issues/consent.

Discussion Communication and symptom assessment can be challenging, particularly in people with limited verbal communication skills. Palliative care staff need to be aware of the range of communication methods used by people with intellectual disabilities.

Conclusion There is a lack of information and training materials around intellectual disabilities for palliative care staff. This needs to be addressed. More work is needed to develop appropriate training in this area.
Reflections on a study tour to China
Authors: Cooley Candy
Published: May 2014

In February 2005 an exciting health-care study tour organized by Master Travel took place to China. A group of 20 health-care professionals working across the field of supportive and palliative care from the UK, The Netherlands, South Africa and New Zealand explored palliative care in mainland China and Hong Kong. They also specifically considered the role of traditional Chinese medicine (TCM) in the supportive care of patients with a life-limiting disease. This comment piece developed from discussions within the group and reflects on palliative care in China from a Western visitor’s perspective.
Support and services for adolescents affected by chronic and life-limiting illness
Authors: Smyth Dion
Published: May 2014

Adolescence is the period between childhood and adulthood. For most, this era of biological, social and emotional development is rewarded by the roles, responsibilities and rights of passage into physical, psychological and legal maturity. Unfortunately, for many young people this transitional time is complicated by chronic and life-threatening illness. This can be either their own or that of a friend or family member. This month’s Web Words looks at a variety of sites offering support and services for people in this phase of their life who are affected by end-of-life matters.
Parental grieving after a child dies from cancer: is stress from stem cell transplant a factor?
Authors: Drew Donna , Goodenough Belinda , Maurice Lucy , Foreman Tali , Willis Liane
Published: May 2014

Aim To investigate psychological distress, family functioning and complicated grieving in parents whose child had died from cancer, and as a function of whether: (a) the deceased child had also received stem cell transplant (SCT) any time during curative treatment; and (b) the place of the child’s death (home or hospital).

Design A cross-sectional case-match design.

Sample Fifty-six Australian bereaved parents in two groups: 28 whose child had also received SCT, matched with 28 (on deceased patient variables) whose child had not received SCT.

Results Parents in the ‘SCT group’ (n=28) reported relatively higher levels of depression, anxiety and stress, and – for those whose child had also died in hospital – a greater likelihood of meeting the criteria for traumatic grief than those parents whose deceased child had not received SCT. There were no significant group differences in family functioning.

Conclusion Routine psychosocial screening, especially for families undergoing SCT, may contribute usefully to a proactive model of palliative care in identifying parents at risk for complicated bereavement outcomes.
Correspondence
Authors: Robinson Ann
Published: May 2014

In January 2004, I had an article published in the International Journal of Palliative Nursing entitled ‘A personal exploration of the power of poetry in palliative care, loss and bereavement’ (Vol 10(1): 32–8).
Spiritual aspects of end-of-life care for Muslim patients: experiences from Iran
Authors: Cheraghi Mohammad Ali , Payne Sheila , Salsali Mahvash
Published: May 2014

The aim of this article is to describe the spiritual aspects of palliative care of Muslim patients based on experiences of end-of-life care in Iran. The religions of the world play a major part in the life cycle of their adherents, and most have rituals and beliefs concerning the care of dying people. For Muslims, death is believed to be not only the cessation of a complex set of biochemical processes, but also a belief that the spirit continues to live and dying is a passage from this world to the resurrection. The spirit is believed to be eternal and does not perish with death. According to Muslims’ beliefs, reading of the Quran (the main religious text) can produce peace of mind in those who are near death. Nursing research has shown that the spiritual dimension of care infiltrates all aspects of nursing care. Palliative care nurses need to be informed about religious aspects of people around the world as a part of palliative care. This article indicates the methods of attending to spiritual care for Muslim patients based upon our experiences in Iran.
Developing local initiatives within end-of-life care in the UK
Authors: Cooley Candy
Published: May 2014

In 2003, the Secretary of State for Health in England announced the introduction of an investment over 3 years to improve care for people coming to the end of their lives. Following the publication of Building on the Best: Choice Responsiveness and Equity in the NHS (Department of Health (DH), 2003), it was identified that patients and carers wanted choice over care at the end of life.
Correspondence
Authors: Mumford Susan
Published: May 2014

read with interest Cecilia Chan’s article on ‘Bereavement and palliative care in China’ (Vol 11(12): 631). I have recently returned from a fascinating 2-week palliative care tour of China. In such a short time one only gets a glimpse of this vast and culturally unique country; however, I would agree with Cecilia Chan in that China should develop a palliative care delivery model that is appropriate to their own society.
Interdisciplinary teams in palliative care: a critical reflection
Authors: O’Connor Moira , Fisher Colleen , Guilfoyle Andrew
Published: May 2014

The notion of the interdisciplinary team as integral to the delivery of palliative care emerges clearly and consistently in palliative care philosophy and practice discourses. Many studies have found clear benefits of interdisciplinary palliative care teams. The empirical evidence supporting such teams, however, is not all positive. It is perhaps timely and appropriate to examine critically how palliative care interdisciplinary teams provide optimum support for patients and families. This article examines the notion that palliative care interdisciplinary teams are universally or inevitably effective and identifies potential barriers and constraints to effective teamwork. In particular, it is suggested that there is a need for careful examination of how teams function in the realm of ‘psychosocial’ care, and ways to look beyond rhetoric are articulated in order to facilitate teams to function more efficiently to provide optimum patient care.
Exploring the human genome: information on cancer genetics
Authors: Smyth Dion
Published: May 2014

The excellent article by Alison Lillie in the last edition of IJPN (Vol 12(2): 70–4), provided the stimulus for the content of this month’s web words.
Data can be enriched by researchers’ personal reflections
Authors: Davies Betty
Published: May 2014

A research assistant (RA) on our current project: ‘Chinese and Latino families’ experiences in paediatric palliative care,’ recently interviewed a mother whose child had died from histiocytosis, a serious condition initially misdiagnosed as nappy rash. By the time the correct diagnosis was determined, the disease was advanced and the child died within months. In her notes following the interview, the RA, a young nurse, wrote:
Fatigue in frail elderly people
Authors: Toye Christine , White Kate , Rooksby Karen
Published: May 2014

Many frail older people are likely to suffer from fatigue, but tools to measure fatigue in this population are lacking. Stage one of this study explored and described the experiences of fatigue of 12 older people from Australian residential aged care facilities. Themes identified were pacing yourself, battling on, hitting rock bottom, feeling safe, and moving on. Findings indicated that, with support, frail elders may be able to manage fatigue effects themselves. A measure of fatigue was developed from stage one findings, with reference to the literature. In stage two of the study, the Frail Elder Fatigue Assessment Tool was subjected to panel review, piloting, and refinement. The refined tool comprises 20 items in three subscales: fatigue effects; fatigue resources; and adaptation to fatigue. Further work is required to establish the tool’s psychometric properties, but it should then be useful for both research and clinical assessment purposes.
Palliative care for children and young people: a community paediatric nursing perspective
Authors: Maunder Eryl Zac
Published: May 2014

Community children’s nursing services are well placed to provide palliative care for children and young people living with life-limiting conditions. The provision of home support can make a real difference to the quality of life for these families. Yet families report that services are fragmented and difficult to access. The range of professionals involved in the care of a child with life-limiting conditions can be daunting for both the child and the family. The key worker role has been identified as advantageous in co-ordinating care. The community children’s nursing team is in a prime position to take on this role. Best practice is achieved through an integrated approach to service provision.
Death anxiety: information and insight available online
Authors: Smyth Dion
Published: May 2014

The US author, inventor and politician Benjamin Franklin is, reputedly, the first to have said that: ‘in this world nothing can be said to be certain, except death and taxes’.
Hospice: the heart of end-of-life care
Authors: Moffat Polly
Published: May 2014

This year’s Help the Hospices conference took place at the International Conference Centre in Harrogate from 2–4 October 2007. The conference entitled ‘Hospice: the heart of end-of-life care’ was heralded a success by attendees and organisers alike. David Praill, Chief Executive Officer at Help the Hospices, said: ‘In the year in which Help the Hospices became a membership body, with all independent charitable hospices in the UK eligible for full membership, we were delighted to host a second major multidisciplinary conference for those working in or with hospices. Moving to becoming a membership organisation is an historic and important change for us all and is one that will ensure that our members can move forward together, speaking with a stronger hospice ‘voice’.
Developing a pain and palliative care programme at a US children’s hospital
Authors: Friedrichsdorf Stefan J , Remke Stacy , Gibbon Christine , Chrastek Jody , Symalla Barb
Published: May 2014

Although a number of successful adult combined pain and palliative care programmes exist worldwide, integrated paediatric pain and palliative care services are rare. This article reviews epidemiology, definition, symptom prevalence and myths in paediatric palliative care. It then describes the development of the Pediatric Pain and Palliative Care Programme at the Children’s Hospitals and Clinics of Minnesota, USA. This paediatric service aims to control acute, chronic and recurrent pain in all in- and outpatients at the hospitals, with follow-up at home. The team also provides holistic, interdisciplinary care for children and teens with life-limiting or terminal diseases, and their families. It is the only paediatric hospice provider in the state of Minnesota. One of the advantages of an integrated Pain and Palliative Care Programme such as the one described in this article, may be the provision of care in a continuum from acute, chronic or recurrent pain to palliative care and hospice care. This example shows, that integrated paediatric pain medicine and palliative care programmes can be successfully implemented in a children’s hospital setting.
The paradox of palliative care nursing across cultural boundaries
Authors: Somerville Jacqueline
Published: May 2014

The purpose of this qualitative study, using a modified grounded theory approach, was to investigate how palliative care nurses care for people from cultural backgrounds other than their own. Ten palliative care nurses were interviewed. The semi-structured interviews were tape-recorded and transcribed verbatim. Analysis commenced as soon as data began to emerge.

The findings show that palliative nursing across cultural boundaries is paradoxical. In endeavouring to treat everyone equally, nurses treated everyone as individuals. They made intense efforts to transcend both cultural and language barriers. The nurses gave of themselves when caring for the patients, but their endeavours were impeded by limited resources and a lack of education.

The theory of cross-cultural endeavour in palliative nursing was developed to explain how palliative care nurses care for patients from cultures other than their own.
Macmillan nurse facilitators: conducting a training needs assessment for district nurses
Authors: O’Hara Annette , Byron Shirley , Moriarty Deirdre
Published: May 2014

This article will describe how Macmillan nurse facilitators conducted a training needs analysis in order to inform and develop an education programme in palliative care for district nurses. A questionnaire was developed and distributed to all 250 district nursing staff in the north/east sector of Glasgow to identify the priority training issues relating to palliative care. This included all district nursing sisters, first and second level registered nurses and auxiliary nursing staff working within the community setting. An 85% response rate to the questionnaire was achieved and an education programme was developed and delivered to address the needs identified by staff. This article goes on to describe the process of the training needs analysis and the benefits of providing an education programme that addresses the educational needs of staff members. Reference is made to a larger evaluation study which highlights staff members’ views on both these points.
Hope at Christmas: online information and resources for palliative care
Authors: Smyth Dion
Published: May 2014

For many people, Christmas is a time of ‘great tidings and joy’. For some, it is a time when the birth of a saviour for mankind is commemorated; for others it is a period of celebration of secular success and excess. However, for many people suffering from debilitating and distressing illness or remembering the grief and loss of loved ones, the holiday period can be marked by loneliness and a recollection of less fortunate times. This month’s Web Words looks at some of the websites where individual stories are told, with people recalling their own encounter with illness at this time of year, which possibly helps others to see and experience hope for the year ahead.
Graseby MS16A and MS26 syringe drivers: reported effectiveness of online learning programme
Authors: Irving Mark J , Irving Ray J , Sutherland Stuart
Published: May 2014

Syringe drivers are commonly used within palliative care to assist with maintaining adequate symptom control. Two of the most common, the Graseby MS16A and MS26, have been associated with a number of serious clinical incidents which have been linked, in part, to inadequate training. This article reports on the results of an online learning programme on managing syringe drivers in palliative care undertaken by 5380 learners between September 2003 and October 2006. The results show that this flexible form of learning environment is acceptable to learners and can lead to improvements in both knowledge and understanding of palliative care issues. Using an online learning model allows large numbers of learners to be educated at minimal cost to either them or their organisation.
Treating cancer-related breakthrough pain: the oral transmucosal route
Authors: Laverty Diane
Published: May 2014

Between 40 and 80% of patients with advanced cancer experience breakthrough pain (BTP), a sudden, rapidly escalating flare of pain occurring against a background of otherwise well-controlled persistent pain. Patients often have up to four episodes of BTP each day, with a typical episode reaching its peak intensity in three to five minutes and lasting about 30 minutes in total. It is essential to provide fast and effective relief since BTP reduces the quality of life of patients and their families, and increases health care costs. The usual approach is to treat BTP with a short-acting, ‘normal release’ oral opioid, but this is absorbed too slowly to treat the typical episode of BTP. As this article explains, oral transmucosal fentanyl citrate (Actiq®) is an effective strong opioid that has a rapid onset and short duration of action that closely matches the characteristics of an episode of BTP.
Religious beliefs: online information and resources
Authors: Smyth Dion
Published: May 2014

Friday 31 October marks the Pagan festival of Samhain, the feast of the dead or, to some, the Celtic New Year. It also celebrates the Christian commemoration of All Hallow’s Eve, more commonly known now by the more secular celebration of Hallowe’en, the night before All Saints’ Day – another case of the appropriation of pre-Christian events and festivities by the developing Church.
The benefits and drawbacks of syringe drivers in palliative care
Authors: Costello John , Nyatanga Brian , Mula Carole , Hull Jenny
Published: May 2014

This article will outline the use of continuous subcutaneous infusion pumps, known as syringe drivers, including their benefits and drawbacks in a palliative care context. There have been over 5?000 articles published globally describing syringe drivers in the medical and nursing literature within the last decade. Many provide guidance on their use, although much of the data are repetitious, disease or age-group specific, and focused on pragmatic issues to do with clinical application. Several trusts and hospices across the UK are carrying out trials of the recently launched McKinley T34 syringe driver. Therefore, it seems timely to consider their wider use internationally. Globally, practitioners in palliative care are very familiar with their use, although the literature lacks specific guidance and, at times, the information is ambiguous. Having briefly reviewed their benefits, the article considers the limitations of using syringe drivers and comments on some of the lesser known/reported practical and patient-focused drawbacks associated with their use. We conclude by considering why, when so much education and training exists to help practitioners use these devices effectively, so many human errors occur.
Conducting qualitative research with advanced cancer patients and their families: ethical considerations
Authors: Reid Joanne
Published: May 2014

Research involving patients with advanced cancer and their families raises ethical issues for researchers. This paper outlines and discusses the ethical considerations associated with conducting a qualitative study, using in-depth interviews, involving patients with advanced cancer who had cachexia and their families. Such ethical issues relate to beneficence, justice, and the research participants’ autonomy. Involving patients and their families at this stage of the illness trajectory allows their voice to inform future practice and ensure that delivery of care is client centred. However, the vulnerability of this population must be recognized and incorporated into meticulous planning of studies to ensure ethical research practice is conducted with this population.
Making decisions about care: what it means for hospice inpatients with terminal progressive disease
Authors: Fisher Simon , Colyer Hazel
Published: May 2014

There is very little research into patients who suffer from a terminal and progressive illness making decisions about health care in a hospice setting. What decision-making means to the inpatients in a hospice could be better understood by staff caring for this patient group.

The aim of this small qualitative study was to explore the nature of decisions and the process of decision-making with patients who had been admitted to a hospice with a progressive terminal illness. A phenomenological approach was taken using a theoretical framework to explore the patients’ life world and its existential meaning, and interviews were conducted with six inpatients.

The decisions that came to the fore for the participants were around the driving force behind admission, which was often pain. Beyond this often traumatic event they were able to be robust in decision-making about day-to-day issues. Other decisions related to the purpose of the admission such as symptom control, achieving independence, whether to have further treatment, communication with their families and returning to the community. Patients had an increased awareness of the fragility of their existence, which was brought into focus by the decision to be admitted to the hospice. The findings give an insight into the driving forces behind decision-making and the kind of decisions that are important to the patients in this sample, which staff caring for this patient group may find valuable.