bluuebunny/crossref_metadata_2025 huggingface dataset:
A panoramic view of a chosen patient’s journey
Authors: Clappison Julie
Published: May 2014

The aim of this article is to accompany a chosen patient on his journey through the ophthalmic outpatients department. It will explore and examine the provision of care, and identify opportunities for best practice within the chosen specialist field. The patient chosen for this assignment is a 72-year-old man suffering from diabetic retinopathy; he will be referred to as Mr E to maintain his confidentiality. Mr E was diagnosed with type 2 (non insulin dependant) diabetes in 2003, prior to this he had described himself as being reasonably fit and active. In this year he had a below knee amputation to his right leg, due to none healing ulcers, which turned gangrenous. This, along with the fact that he also had severe venous ulcers to his left leg and foot, meant that he was mainly confined to a wheelchair. My E also suffers from peripheral vascular disease, peripheral neuropathy, and left-sided heart failure with sinus tachycardia; he has prolific diabetic retinopathy, significant macular oedema, sclerotic cataracts and kidney problems. He takes medication to control his hypertension, heart and kidney conditions, and metformin for his diabetes. Up until the onset of ill health Mr E had been a successful business man, and was widely travelled. He now admits his lifestyle during this time could have contributed to his current conditions, he states that during business trips, his diet consisted mainly of bar meals and fast foods, he also drank more alcohol than usual and smoked quite heavily, due mainly he says to the stress of being away from home and his family. In contrast he now has a much more sedate lifestyle, and much healthier diet, he still drinks in moderation but stopped smoking on diagnosis of his diabetes. He now has few interests, he used to be a keen golfer but can no longer play, but he does enjoy visits from friends and his two daughters and their families.
Clinical update — pharmacological issues in ophthalmology
Authors: Amanda Sherratt , Yvonne Needham
Published: May 2014

This article addresses pharmacology and pharmacokinetic principles of main drug groups prescribed in advanced practice in ophthalmology settings. It is the first in a series of two articles which have been developed to underpin advanced practice in ophthalmology. The main body of the article addresses in detail the different types of medications and principles of administration. These are then further developed to focus specifically on conditions in ophthalmic practice.
Do looks matter? Supporting patients with eye conditions that affect their appearance
Authors: Gemma Borwick , Salma Khanche
Published: May 2014

Ophthalmic patients who have conditions that affect their appearance are vulnerable to altered body image, and appearance-related distress and anxiety. Some patients will cope better than others, but generally if they place less value on their appearance, are less concerned about negative evaluation from others, satisfied with the social support they receive and perceive the difference to be less severe/visible to others, they should have a lower risk of appearance-related distress. Interventions are available to support patients and their families. Many are simple and can include: normalizing feelings; giving a patient support leaflet; and helping the patient devise strategies for managing unhelpful reactions from others.
A model for managing glaucoma referrals in secondary care
Authors: Freeman Mary
Published: May 2014

This article describes a referral refinement model used in Sheffield to manage and streamline referrals received by the eye department. Serving a population of approximately 500 000 residents, the ophthalmic unit in Sheffield receives almost 800 referrals per year with suspected glaucoma. A significant number of these are false positive referrals that are subsequently discharged within a dedicated glaucoma unit. The article illustrates an established model that triages referrals, providing more capacity in clinic for those patients who do need to be seen and considered for treatment.
Acknowledging the contribution the nurse can make to patients with thyroid eye disease
Authors: Platts Marion , Cooper John , Cook Anne
Published: May 2014

Thyroid eye disease(TED) or Graves’ orbitopathy(GO) is a physically and socially disabling disease, often of long duration. It can occur alongside thyroid dysfunction, classically presenting with thyrotoxicosis, diffuse goitre and exophthalmos, but in some instances can precede a diagnosis of thyroid disease. It may even occur years after a thyroid problem has been stablized. Symptoms during the active, inflammatory phase include mild to severe eye discomfort, visual disturbance, swelling and retraction of eyelids, proptosis and potentially, visual loss, although this is rare. The natural history of TED tends towards an eventual burn-out of the active disease. However, during the course of the condition patients may face a multitude of procedures and can be left with permanent changes to their appearance with the associated frustration and distress this can cause. This paper will provide a brief outline of the disease process, its clinical and psychological manifestations and some of the present thinking associated with its treatment. It will also describe some of the nursing interventions to support and care for patients within an interdisciplinary team setting.
Formulae and lens constants for IOL power calculation on the IOL Master
Authors: Millbank Lyn
Published: May 2014

Optical biometry using the Zeiss IOL Master has become synonymous with measurement precision, simple operation and excellent outcomes. The IOL Master is easy to use, however it is important to understand the procedure and technique and that the measurements are applied to modern formulae using optimized A constants.

Following on from ‘Accurate optical biometry using the IOL Master’ ( Millbank, 2011 ), the aim of this article is to discuss and explain the formulae to which the biometry measurements on the IOL Master are applied and to attempt to demystify the commonly misunderstood lens constant' issue.
Sarcoidosis: the disease and its ocular manifestations
Authors: Slight Carol , Marsden Janet , Raynel Susanne
Published: May 2014

Sarcoidosis is a systemic disease that has ocular manifestations. For many patients there is a long course of treatment both topical and systemic. This article describes sarcoidosis both systemic and ocular and some of the treatment modalities used.
Determining the availability and accessibility of online learning tools for ophthalmic nurses in developing and emerging economy regions of the world
Authors: Machin Heather , Marsden Janet
Published: May 2014

As online education and resources continue to grow at a rapid rate for nurses in developed nations, the knowledge gap between developed and developing nation nurses continues to grow. Computer technology, while accessible and easy to use within developed countries, is new and unchartered territory for many others around the world, and issues such as bandwidth access, cost, local language content, translation and computer literacy, and computer skills remain key elements that need to be addressed before nurses in developing regions of the world can effectively benefit from such technology, otherwise they will be subject to an ever increasing digital divide.

This paper will discuss the issues facing many developing nation ophthalmic nurses as they seek current evidence-based practice, evidence-based tools and training, connection with the wider nursing community, and an enhanced ability to apply new knowledge to their own practice advancement and patient care.

This paper was compiled during a strategic research development phase for ORBIS Internationals' Cyber-Sight ( www.cyber-sight.org ) online learning tool for nurses. To date, Cyber-Sight has predominantly provided telemedicine and education support to international ophthalmologists around the world.

The goal to develop a similar nursing page required initial research to determine the accessibility and availability of this internet resource, as it appeared far more difficult due to the language and affordable-access variances between doctors and nurses. Additionally, this task was considered uncharted waters in ophthalmic online nurse training within developing, emerging economy and war-torn areas of the world. Therefore, as part of a preliminary strategy, ORBIS decided that analysis of the online ophthalmic nursing community was necessary prior to commencing development of their on-line nurse training tools on Cyber-Sight.

This paper presents the accumulation of investigations undertaken in order to develop a potential ophthalmic nursing programme for online nurse trainee groups in developing and emerging economy nations.
Due North: directions in palliative care
Authors: Sweeney John
Published: May 2014

This is one of the many excellent websites that have been recently developed across Canada, perhaps reflecting the nation’s high profile in the field of palliative care. Designed with tasteful graphics that do not slow down the download time, the site consists of three major areas:

Clinical information About the programme Patients and family.
‘Vision and Hope’
Authors: Webber Jeanette
Published: May 2014

Late summer usually heralds a spate of professional conferences and this year has been no exception. I am writing this editorial shortly after the 10th International Conference on Cancer Nursing, held in Jerusalem under the title ‘Vision and Hope’ and immediately before the UK Palliative Care Congress which incorporates the annual meeting of the Palliative Care Research Forum of Great Britain and Ireland.
HIV-related brain impairment: from palliative care to rehabilitation
Authors: Stephenson Jeffrey , Woods Sandie , Scott Brett , Meadway Jeanette
Published: May 2014

Brain impairment is a distressing manifestation of human immunodeficiency virus (HIV) disease characterized by progressive cognition impairment leading eventually to dementia and death. Patients with advanced brain impairment are clinically difficult to manage and usually require residential care. In 1997, a brain impairment unit opened at the Mildmay Hospital UK in London to meet the needs of this patient group. It began as a nurse-led unit, has adopted an interdisciplinary approach to care and aims to maximize the quality of life until death. In a study of patients admitted during its first year, it emerged that while the condition of many patients declined resulting in death, some patients improved sufficiently with rehabilitation and ongoing medical treatment to return to independent living. The possible reasons for this are discussed in this article. Study findings have not only affected the approach to care but have also highlighted some unexpected problems; the importance of adopting an interdisciplinary approach in caring for this group of patients becomes evident.
Balancing efficiency, cost-effectiveness and patient choice in opioid selection
Authors: Davies Julie , McVicar Andrew
Published: May 2014

Recent UK government initiatives have stressed the importance of patient choice in health care. In relation to palliative care, this involves the achievement of the best quality of life, respect for patient autonomy and choice over treatment options. Regarding selection of analgesic, the treatment options are evaluated by considering efficacy and potency, routes of delivery, titration and conversion, adverse effects and cost-effectiveness. This article explores these issues in relation to the rationale for choice of strong opioids. Morphine and diamorphine are usually considered the most effective, ‘first-line’ analgesics but is this necessarily the case when patient choice is put into the equation? There is a case for more flexibility in selecting the opioid depending upon individual circumstances. Opioid selection should take into account quality of life issues. However the scope for opioid selection seems likely to be restricted by considerations of cost-effectiveness. The challenge is to ensure that the patient voice is heard.
Fulfilling patients’ wishes: palliative care at home
Authors: Wilkinson Susie
Published: May 2014

As the ageing population increases, a major dilemma for palliative care service provision in the United Kingdom over the next century will be where patients are cared for. Historically, palliative care has been provided by hospices, but it is now recognized that patients wish to be cared for and die at home.
Exploring rehabilitation within lymphoedema management
Authors: Mason Wendy
Published: May 2014

A review of the literature reveals rehabilitation to be a complex concept. Rehabilitation is more than a global term used to encompass the different types of therapy employed to reduce the effects of disability or chronic illness; it is a philosophical approach which provides a framework for care. This framework promotes an environment in which the individual is enabled to attain his/her own ideal of health. The concept of rehabilitation is explored within the mainstream management of lymphoedema to identify implications for improving practice. Areas in which lymphoedema therapists could strive to achieve a more rehabilitative approach to care include: implementing an organized and standardized approach to lymphoedema management, improving interdisciplinary working, developing the holistic scope of care, and acknowledging the central importance of the patient and family in clinical practice. Adopting a rehabilitative approach to lymphoedema management will help to promote greater patient satisfaction with treatment.
Sexuality in cancer and palliative care 1: effects of disease and treatment
Authors: Rice Ann Marie
Published: May 2014

All cancers and related treatments have the potential to affect sexuality and sexual function. This may result from impaired body function or altered body image, or from the emotional and psychological distress that often accompany diagnosis and treatment. It is increasingly acknowledged that issues surrounding sexuality are an important factor in quality of life for patients with cancer, and that sexuality is a legitimate area of concern for nurses in oncology and palliative care. However, issues relating to sexuality remain among the most poorly addressed in cancer care — possibly owing to lack of knowledge and expertise. There are also societal norms, myths and assumptions that may prevent nurses from broaching these issues. To provide this component of care, nurses need to have good communication skills, an open and non-judgmental approach, and knowledge of the potential ramifications of disease and treatment on sexuality.
The use of oxycodone in cancer-related pain: a literature review
Authors: Cairns Rosemary
Published: May 2014

Oxycodone is a semi-synthetic opioid agonist that can be used as an alternative to morphine in controlling cancer pain. It differs from morphine in its biphasic qualities in controlled release (CR) formulation. This review of post-1995 international literature explores the use of oxycodone compared with morphine, as well as titration studies comparing CR formulation against the conventional immediate release (IR) formulation. Most studies involved small numbers and so their results cannot be generalized. Statistical tests were used inappropriately in several of the studies reviewed, which compromises the validity of the findings, but it is important to note that there was broad agreement between researchers. Studies were graded based on research quality criteria of the US Agency for Health Care Policy and Research (United States Department for Health and Human Services, 1993). Conversion ratios and side-effects are discussed and recommendations made for the use of oxycodone in opioid rotation, particularly for patients suffering morphine-induced hallucinations. Several studies also recommend the use of oxycodone in preference to morphine in patients with renal impairment.
Celebrating cultural diversity
Authors: Nyatanga Brian
Published: May 2014

Recognition and promotion of cultural diversity is a central theme in many areas of modern life: health care, sport, politics, religion, education, industry and society at large. Cultural diversity is no more than rhetoric, however, unless people understand and appreciate diversity so that every cultural group is able to participate and develop autonomously within society.
Protective coping: a grounded theory of educative interactions in palliative care nursing
Authors: Morgan Adrian K
Published: May 2014

The development of a workable caring partnership in palliative care between the nurse, patient and informal carer is contingent upon the nurse’s use of effective interactions that will not only inform, but also help individuals to work towards common beneficial goals. This article summarizes a research project undertaken in Western Australia, which examined the symbolic nature and characteristics of educative interactions. Their therapeutic value was interpreted in order to construct a theory, which in turn, explained their function. Protective coping, which deals with overcoming or minimizing stressors to the individual, has been identified as a basic social interactional process that is fundamental to the optimization of patients’ well being during terminal illness care. An understanding of the knowledge–power relationship in palliative care is crucial if subsequent educative outcomes are to be positively influenced.
Bereavement support: something for everyone?
Authors: Payne Sheila
Published: May 2014

It is an assumption that the holistic and person-centred care delivered by hospices and specialist palliative care services helps to prepare people for the grief and loss of bereavement and produce a better outcome in terms of subsequent adjustment, than conventional care. There is, however, remarkably little evidence of the truth of this claim.
Action is required on out-of-hours care
Authors: Pollard Tom
Published: May 2014

The UK is gripped by election fever at the moment, and all government business has been put on hold until after the election on 7 June. So it is not surprising that an announcement made by the Department of Health on 1 May should have received little coverage outside the nursing press.
Complementary therapies - patient demand
Authors: Wilkinson Susie
Published: May 2014

In Western countries complementary therapy is growing in popularity. The estimated spend in the UK in 1999 was £1.6 billion (Thomas et al, 2001). Why is there today such a commitment to complementary therapy and who is using it? Evidence indicates that users tend to be younger, female, with a high educational status and high income. They often suffer from a chronic health problem. Such people may have a more holistic approach to life than others. Many have experienced a major life event. A review of 26 studies from 13 countries revealed that the average use of complementary therapy among cancer and palliative care patients was 31.4% (Ernst and Cassileth, 1998). The types of therapy undertaken varied little from country to country. There appear to be several reasons for the increasing use of these therapies. These include media reports of benefits, the belief that these therapies are ‘natural’ and the general shift towards a more holistic approach to care.
A practice-based evaluation of a liquid barrier film
Authors: Harding Nicola
Published: May 2014

In palliative care it is often the little things such as being comfortable that help to improve a patient’S quality of life. When the opportunity arose in our hospice to take part in a practice-based evaluation of a product that promised to make patients more comfortable, we were pleased to take part. Our small-scale evaluation was part of a wider study of SuperSkin, a liquid barrier film designed to protect skin at risk of damage. Information was collected from the patient, patient’S medical notes and the nursing staff – a patient daily diary record was used in addition to normal information recordings. We evaluated the efficacy of the product and found this liquid barrier film to have a positive effect in several ways. It appeared to assist in the healing of skin damaged by friction and shearing forces, and from excoriation from wound exudates, urine and faeces. In addition, it appeared to protect healthy, ‘at risk’ skin from the same problems.
Variant Creutzfeldt-Jakob disease: need for mental health and palliative care team collaboration
Authors: de Vries Kay , Sque Margaret , Bryan Karen , Abu-Saad Huda
Published: May 2014

People with a dementia syndrome and a superimposed terminal illness are increasingly being referred to palliative care services. Creutzfeldt-Jakob disease (CJD) is a dementia syndrome in the early stages of which people experience a variety of psychological symptoms that may lead to them being admitted to psychiatric services. People with CJD have died in psychiatric units. There is clearly a need for collaboration between mental health and palliative care services in providing care for people with CJD and other dementia syndromes. An inductive qualitative study of one case of variant CJD (vCJD) was carried out to explore issues that were raised in providing care for a young person with the disease who had died in a hospice unit. The study, which was a pilot for a larger study, highlights some of the complexities of providing care for people with an end-stage dementia and identifies the need for the development of education initiatives to increase knowledge and understanding of the end-of-life needs of people with CJD and other dementia syndromes, and their families.
Metastatic bone disease and tumour-induced hypercalcaemia: treatment options
Authors: Heatley Sarah
Published: May 2014

Metastatic bone disease in malignancy is responsible for considerable morbidity and mortality. Problems include debilitating bone pain and skeletal-related events (SREs), including tumour-induced hypercalcaemia. This article provides an overview of the different approaches to managing bone disease in malignancy with particular focus on the role of bisphosphonates. The three generations of bisphosphonates are discussed in relation to their role in treating bone pain and hypercalcaemia, and also in terms of their potential for being used in a prophylactic way to prevent or delay SREs.
How basic is palliative care?
Authors: Gupta Harmala
Published: May 2014

After attending a workshop on community participation in palliative care held in Manjeri, Kerala, India, I came away feeling both exhilarated and confused. Exhilarated, for here was a community on the move, and confused, because palliative care was being described as basic care. The question that arose then, and continues to spin around in my head is, ‘What is palliative care?’ Is it specialty care delivered by a multidisciplinary team of professionals? Or is it basic care that anyone with some commitment and training can provide to the community in need? If it is a bit of both, then at what point does it cease to be one or the other? A spirited presentation at the workshop by the Neighbourhood Network in Palliative Care (NNPC) groups spearheading palliative care in the Northern part of Kerala, and a day’s visit out in the field with their volunteers still left me groping for answers.
The impact of unrelieved patient suffering on palliative care nurses
Authors: White Kate , Wilkes Lesley , Cooper Karen , Barbato Michael
Published: May 2014

Aim To describe the impact of unrelieved patient suffering on nurses working with palliative care patients.

Design This was a qualitative descriptive design using semi-structured interviews.

Sample Nine experienced palliative care nurses were interviewed.

Results Nurses acknowledged that the term ‘suffering’ generally was not used in the workplace. The nurses identified that only a small group of patients died with suffering that could be classified as ‘unrelieved’ but that the impact of these patients’ suffering on themselves was enormous. Nurses described the impact in terms of perceptions of suffering (difficult situation), feelings (helplessness, distress, feelings of failure), bearing the burden (alcohol consumption, headaches) and effects on their relationships with family. The nurses identified several factors that increased the personal impact of unrelieved patient suffering. The most important strategy for ameliorating the impact of unrelieved patient suffering was informal support from work colleagues.

Conclusion The nurses’ stories indicate that the personal impact of unrelieved patient suffering could be reduced through acknowledgment of this suffering and better formal and informal support mechanisms.
Palliative care for all: the global challenge
Authors: Costello John
Published: May 2014

Palliative care nursing in the UK has come a long way since the 1960s when the opening of St Christopher’s hospice in 1967 saw a more sensitive focus placed on caring for patients at the end of life. Nearly 40 years later, palliative care provision is slowly being extended to include those with non-malignant disease. This important message, amplified by writers and national groups, calls for greater equity in promoting the relief of suffering much more widely (National Council for Palliative Care (NCPC), 1998; Field and Addington-Hall, 1999).
Introducing ‘Palcall’: an innovative out-of-hours telephone service led by hospice nurses
Authors: Campbell Colin , Harper Ann , Elliker Mary
Published: May 2014

Palcall is an out-of-hours telephone service providing support and advice to palliative care patients, their carers and health professionals. Each patient who is registered with the scheme consents to named friends or relatives having access to the dedicated Palcall number. Telephone calls to the service are taken by the most senior palliative care nurse on duty in the hospice. The nurse has ready access to details of the medical condition and current medications of every patient who is registered. If required, the nurse can contact a more senior nursing colleague or the on-call hospice GP. The day following the telephone call, the Palcall administrator forwards written details to the patient’s GP and any healthcare professional involved in the care of the patient. Quality control measures are in place to continually enhance the service.
End-of-life care in a nursing home: a study of family, nurse and healthcare aide perspectives
Authors: Goodridge Donna , Bond John B , Cameron Cynthia , McKean Elizabeth
Published: May 2014

Aim

To examine the perspectives of family members, registered nurses and healthcare aides regarding the last 72 hours of Canadian nursing home residents' lives.

Study design

Exploratory, descriptive design using semistructured interviews.

Sample

Consisted of 14 registered nurses and eight healthcare aides who had provided care within the last 72 hours before a resident's death and four family members who had visited within the same time frame.

Setting

A 220-bed nursing home located within a larger long-term care facility in Canada.

Methods

Thematic analysis was conducted independently and through consensus identified themes and subthemes emerging from the interviews.

Findings

Dyspnea was a more common end-of-life (EoL) symptom for nursing home residents in this sample than was pain. Caring behaviours of staff were central to the resident's dying process and involved assessment, coordination of care, physical care, family education and nurturance. Family members' ambivalence about the resident's death and fear of the resident dying alone were frequently noted.

Conclusions

Appropriate and timely symptom management and a range of caring behaviours of staff are critical elements in the dying experience of nursing home residents. Additional education and support for personnel involved with caring for this group will enhance end-of-life care.
The increasing use of reiki as a complementary therapy in specialist palliative care
Authors: Burden Barbara , Herron-Marx Sandy , Clifford Collette
Published: May 2014

Palliative medicine and complementary therapies (CTs) have developed within the NHS as parallel philosophies of care. As a result, the last decade has seen an increase in the integration and usage of CTs, as adjunct therapies to conventional medical treatment. Documented benefits of relaxation, decreased perception of pain, reduced anxiety and improved sense of wellbeing have been shown to enable an enhanced quality of life, where curative treatment is no longer an option. Reiki is a more recent addition to the range of CTs available to cancer patients. As an energy-healing intervention it has gained in popularity as a non-invasive and non-pharmacological approach. Anecdotal evidence suggests that the profound relaxation effect has a positive impact on alleviating anxiety, stress, perception of pain and promotes a feeling of wellbeing particularly relating to the nature of psychospiritual wellbeing. However, there is very little evidence to support its application within clinical practice, and none within the specific field of specialist palliative care (SPC). This article will consider the position of reiki as an emerging CT within SPC. The function of the hospice movement, the role of CTs together with an understanding of energy healing will also be explored. Within this context, the rise in popularity of reiki and its potential benefits for SPC patients will be discussed. These considerations will then form the basis of the justification for further research in SPC.
A perinatal hospice for an unborn child with a life-limiting condition
Authors: Ramer-Chrastek Joan , Thygeson Megan V
Published: May 2014

Perinatal hospice is a newly developing model of hospice care, offered to the family in the prenatal period, which provides support, guidance and comfort to families who make the difficult choice to continue a pregnancy after the diagnosis of a fatal fetal anomaly. The model is based on the hospice philosophy of living life fully and enjoying each moment. This article describes a perinatal hospice programme that is currently in place at a hospice home care programme of a children’s hospital in the USA. It includes a case example of one family’s experience of this programme.
Palliative care management of a child with juvenile onset Huntington’s disease
Authors: King Nicola
Published: May 2014

This is a case report of the palliative care management of a 13-year-old girl who died of juvenile onset Huntington’s disease in a children’s hospice in the southeast of England. It outlines her disease progression and describes the care that she received. In particular, the medications and other measures used to control her symptoms during her last 10 days are discussed. The article also explores some of the ethical difficulties of caring for children dying from degenerative disorders. Although juvenile onset Huntington’s disease is an extremely rare condition, the issues around terminal care management are very similar to those for any neuro-degenerative disorder, whether in an adult or child. A number of children’s hospices have opened in the last 10–15 years in the UK. They accept children with a wide range of life-limiting conditions and have become experts in offering respite care and symptom control to these children and their families. They are chosen increasingly as the place of death for such children.
Exploring terminally ill patients’ and their families’ perceptions of holistic care in Malaysia
Authors: Loh Keng Yin
Published: May 2014

Aim: To document the perception of terminally ill patients and their family members on the care provided to them, and to look at the components of holistic care that are viewed as inadequate.

Methods: Thirty cancer patients from a 10-beded palliative ward and their family members who were the chief carers were interviewed. They were asked to give their perceptions on four major areas of care: physical, social, psychological and spiritual. The participants were asked to report which area(s) of the service were inadequate.

Results: Most patients and family members perceived that they received adequate physical care. However, the psycho-social and spiritual aspect of care were perceived as inadequate by the majority of patients and their families. None of the patients interviewed had ever been asked about spiritual distress.

Conclusion: The holistic model of care in caring for terminally ill patients is not practised fully. Further development in the psycho-social and spiritual aspects of care is necessary. There is a need to conduct further research to address these domains.
Bereavement care for families part 2: Evaluation of a paediatric follow-up programme
Authors: deJong-Berg Margaret A , Kane Lynett
Published: May 2014

In North America, parents are not expected to outlive their child. When they do, neighbours, co-workers, friends and family do not know what to say or do resulting in parents feeling isolated in their grief and left alone to find the support they need. The Paediatric Palliative Care team at Capital Health’s, Stollery Children’s Hospital (Stollery) in Edmonton, Alberta, Canada began a programme of bereavement follow-ups in April 2002 to offer support to families who had experienced the death of their child. In Part 1 of this article (deJong-Berg and deVlamming, 2005) implementation and the current state of the programme is outlined, and in Part 2 we present the results of the programme evaluation conducted in Spring, 2005. Eighty-one families were invited to take part in a satisfaction survey to determine the helpfulness of this bereavement follow-up programme. Twenty-nine parents, representing 21 families, took part. Parents reported that written information received was useful and that they felt supported knowing a resource was available. They also felt also felt that the programme extended the care given by the Stollery staff throughout their child’s illness and death. This article reports the findings of the programme evaluation and discusses the implications for practice and future research.
The impact of complementary therapy on mainstream practice
Authors: Milton Julie
Published: May 2014

Complementary therapies refer to a wide range of health interventions originating from different cultures across thousands of years of history. They take a holistic approach to patient care where physical, psychological, social and spiritual factors are taken into account.
A guide to understanding malignant bowel obstruction
Authors: Lynch Bethany , Sarazine Julia
Published: May 2014

Malignant bowel obstruction (MBO) is a common occurrence in patients with abdominal and pelvic malignancies. MBO is a complex problem that is a result of a cascade of pathophysiological events. For many patients near the end of life, aggressive medical management of this problem is necessary because patients are not candidates for surgery. An assessment and thoughtful examination of options for intervention is important in aligning treatments with patients’ goals of care. The palliative care nurse has an important and privileged role in nursing, educating and advocating for patients with MBO. This article reviews the normal and abnormal physiology of the gastrointestinal tract. Advice is provided for the assessment and management of the physical and psychological symptoms of MBO in patients near the end of life.
Palliative care as a framework for older people’s long-term care
Authors: Hallberg Ingalill Rahm
Published: May 2014

This article draws on the findings from several years of research on the health problems, quality of life and care of older people, especially during the later years of life, and argues that there is a need to develop and provide care according to the principles of palliative care. The findings indicate that palliative care, including a focus on symptom management, psychosocial and existential issues, may be appropriate for the long-term care of older or very old people – not just those at the very end of life. However, the way that palliative care is provided to older people at the very end of life needs to be adjusted. It should be adapted to the situation that accompanies advanced age and having lived a long life. It should recognize that symptom management ought to address clusters of health complaints rather than isolated symptoms, bodily changes and how they are perceived. Palliative care for older people should also take into consideration the importance of the social network as well as common fears of dying and the very essence of death, and fear of being separated from one’s loved ones and the activities valued in life.
Respite care for children, young people and families - are their needs addressed?
Authors: Corkin Doris AP , Price Jayne , Gillespie Elizabeth
Published: May 2014

In recent years there has been an increasing demand for respite care in the community setting, as advances in medicine and technology have enhanced the life expectancy of children and young people with a life-limiting illness. However, the need for flexible respite provision in the home frequently presents a challenge for those health care professionals involved in caring for these children and their families. Following a review of literature this paper will demonstrate how a family-centred approach to respite provision and palliative care can enhance the quality of life for a child nearing the end of life and support the expressed needs of the child’s family with accessible respite care.
Norwegian nurses’ thoughts and feelings regarding the ethics of palliative sedation
Authors: Venke Gran Siv , Miller Jean
Published: May 2014

The purpose of this descriptive study was to explore whether or not nurses viewed deep palliative sedation as an ethical problem; and, if so, why they felt it posed a problem for them. An exploratory descriptive design with quantitative and qualitative sections was used. A questionnaire, consisting of open- and closed-ended questions, was answered by a sample of 73 nurses employed in three settings in Norway. The results were analyzed using descriptive statistics and content analysis. The findings indicated that 88% of the respondents had provided care for patients with great suffering; 78% had provided care for patients who received palliative sedation; and 63% felt that deep palliative sedation posed ethical problems. The respondents felt it was ethically difficult when patients were not involved in the decision, when families had continued needs to communicate with their loved ones, and when nurses felt uncertain about the relief of symptoms due to patients’ inability to communicate.
Children affected by genetic conditions in end-of-life care. Part 2: findings and discussion
Authors: Metcalfe Alison , Pumphrey Rachel , Clifford Collette
Published: May 2014

Background: Many children cared for in hospice settings are affected by a genetic condition. Therefore, children’s hospice nurses require knowledge and awareness of the issues faced by families affected. Aim: The authors carried out a study to ascertain how important children’s hospice nurses perceived genetics to be within care provision generally and explore how confident they were personally in meeting these care needs. Method: A questionnaire survey was sent out to 277 nurses working in children’s hospices across the UK. The methods used are described in detail in part 1 of the study. Results: One hundred (36%) questionnaires were returned. Most children’s nurses felt that an understanding of genetics was very important within children’s hospice care. However, they were not confident about integrating most aspects of genetics into clinical practice. Discussion: Children’s hospice nurses are required to care for children and families affected by life-limiting genetic conditions and many have complex support needs, which require an insight into issues associated with genetics. This study demonstrates that more education about genetics is required by children’s hospice nurses. The focus of educational courses should be on the psychosocial aspects of care, which are needed in the context of hospice care, because this is considered the most important and where nurses were slightly more confident.
The implementation of an end-of-life integrated care pathway in a Chinese population
Authors: Lo Sing-hung , Chan Chau-ying , Chan Chun-hung , Sze Wing-kin , Yuen Kwok-keung , Wong Chi-sing , Ng Ting-ying , Tung Yuk
Published: May 2014

The integrated care pathway is used in end-of-life care to improve quality of care; the Liverpool Care Pathway (LCP) has been used in Europe and North America. Tuen Mun Hospital is a regional hospital in Hong Kong, China. The End-of-life Care Pathway (ECP) based on the concepts used in the Liverpool Care Pathway, was developed, with modification to suit the local condition. Criteria for entry onto the ECP were that the multidisciplinary team agreed the patient was dying, and was at least two of the following: bedbound; semi-comatose; only able to take sips of fluid; no longer able to take tablets. The ECP template replaced all other inpatient documents. The ECP was implemented in the palliative care unit for terminal cancer patients. An audit was performed to review the result. Fifty-one Chinese patients were included in the audit with mean age 64. The median duration of ECP use was 24 hours. All patients had current medication assessed and non-essential drugs were discontinued. The audit result suggested integrated care pathway in end-of-life care could be implemented successfully in an Oriental culture. The acceptance of using the ECP as a standard clinical practice takes time and education. Appropriate template design and supervision are the keys to success.
Factors influencing the referral of non-cancer patients to community specialist palliative care nurses
Authors: Andrews Nicola , Seymour Jane
Published: May 2014

Aim:

To understand why non-cancer patients are under-represented on the caseloads of community Macmillan specialist palliative care nurses by exploring what influences community health professionals' referral patterns of non-cancer patients in one locality of a primary care trust.

Design:

The study adopted a qualitative design, making use of semi-structured interviews with a purposive sample of community health professionals comprising three GPs, three district nurses, and three community matrons. The framework approach was used for analysis.

Findings:

The classification of patients, the perception of the palliative care service, the existence of different pathways of care for cancer and non-cancer patients, and the role of other specialist nurses all seem to influence the referral patterns of community health professionals.

Conclusion:

Although further research is required to fully understand all of the relevant viewpoints, in particular those of patients and carers, it appears that innovative new models of service delivery could be developed that address the engrained perception of the Macmillan nursing service as being for dying cancer patients only, as well as the blurred boundaries between Macmillan nurses and other senior clinical nurses.
Salivary gland dysfunction (dry mouth) in patients with advanced cancer
Authors: Davies Andrew , Hall Sally
Published: May 2014

Salivary gland dysfunction (SGD) is a common problem in patients with advanced cancer, and is associated with significant morbidity in this group of patients. The management of SGD involves treatment of the cause, treatment of the symptoms (preferably with saliva stimulants), prevention of the complications, and treatment of the complications. This article reviews the evidence for the clinical utility of various management strategies, highlighting those strategies that have been investigated in patients with advanced cancer. tion — Salivary gland hypofunction — Xerostomia — Palliative care
Nurse-family interaction in Malaysian palliative care settings: a focused literature review
Authors: Namasivayam Pathma , O'Connor Margaret , Lee Susan , Peters Louise , Barnett Tony
Published: May 2014

Background: Palliative care in Malaysia developed in the 1990s to improve the quality of life of people with advanced cancer. Like many other countries, Malaysia faces its own challenges in providing palliative care to patients and their families. In Malaysian culture, families play a significant part in providing care to the dying. Connecting with families in patient care is therefore important. This paper reports a focused literature review evaluating studies on the care of the families of terminally ill people in palliative care environments in Malaysia. Method: The search engines CINAHL, Medline, PsyclNFO, and Google Scholar were searched for literature published from January 2000 to April 2010 relating to family care in palliative care environments. Due to a paucity of research on family care in Malaysia, the search was broadened to include relevant studies on family care internationally. Results: Four themes were identified: delivering palliative care in Malaysia, communicating with families, crossing cultural boundaries, and the caring experience of nurses. Conclusion: The studies indicate the importance of the nurse-family interaction in providing optimal and culturally appropriate palliative care. This paper emphasizes the need for research into the nurse's role in family care and for developing a theory appropriate to the Malaysian culture and other countries with cultural diversity.
A multicentre survey of falls among Danish hospice patients
Authors: Ishøy Torben , Steptoe Phillip
Published: May 2014

The risk of falling is high among palliative and end-of-life care patients, and neither a systematic fall assessment nor an evaluation of general fall prevention has been carried out at Danish hospices. This descriptive study investigated the frequency and circumstances of falls in 10 hospices comprising 110 beds during 6 months of monitoring. An average of more than two falls per hospice per month was found, with 44% of the incidents occurring during the first 5 days after admittance. Thirty-two percent of patients died within 5 days of falling. More falls occurred on Wednesdays than on any other day, and most occurred late in the evenings and at night. Only 9% were properly reported as adverse events to the Danish Patient Safety Database. The findings indicate that efforts to significantly reduce the number of falls must be based on a more focused strategy of fall prevention.
Safer ambulatory syringe drivers: experiences of one acute hospital trust
Authors: Freemantle Alison , Clark Daniel , Crosby Vincent
Published: May 2014

In December 2010 the National Patient Safety Agency released a Rapid Response Report citing evidence of harm and death necessitating the need to immediately address safety issues affecting ambulatory syringe drivers with rate settings in millimetres of travel. These devices are widely used in palliative care in the UK, both in the community and in the hospital setting. In order to ensure a successful changeover to a safer system, a coordinated, multidisciplinary, cross-boundary approach is essential. This article outlines the experiences of one acute hospital trust in identifying and trialling ambulatory syringe drivers to potentially adopt, and in implementing the selected driver and training staff in its use. It is hoped that it will provide insight into the challenges of undertaking such a change in practice.