bluuebunny/crossref_metadata_2025 huggingface dataset:
Developing and evaluating patient information for patients with dry eye
Authors: Hardman Elizabeth Jane
Published: May 2014

Background

Verbal interactions between healthcare professionals and patients form the basis of most hospital outpatient consultations helping to determine diagnoses and treatments and to provide patient information. The use of the patient information leafet (PIL) to complement and reinforce the verbal message is well reported. In disease management where self care plays an important role, providing patient information is particularly crucial. Dry eye is a multifactorial and complex disease and it is recognized that patients who have a better understanding of dry eye tend to have better treatment outcomes and better control of their symptoms.

Aims

The purpose of this project was to design an evidence-based PIL for the chronic, ocular condition ‘dry eye’, which would meet the information needs of patients.

Primary objectives

To demonstrate the efficacy of the revised PIL as an effective educational tool for patients suffering with dry eye and identify (i) themes of information dry eye patients would like to see incorporated into a new PIL and (ii) demographic characteristics of those patients.

Design

A needs analysis on an existing leaflet (PIL1) via a patient satisfaction survey was performed to determine the content of a newer, revised leaflet (PIL2). PIL2 was evaluated by patients via a repeat questionnaire. Data analysis involved statistical comparison of fixed-response data and thematic description of open-response data.

Participants

Patients attending ophthalmology outpatient clinics at Gloucestershire Royal and Cheltenham General Hospitals with a diagnosis of dry eye either as primary pathology or as an incidental finding to other ocular pathology, plus representatives of the multidisciplinary team in ophthalmology.

Results

66 participants were recruited and 53 completed questionnaires were returned yielding a response rate of 82%. Data analysis demonstrated statistically significant improvements in patients' understanding of dry eye and symptom management, and satisfaction with information on treatments after reading PIL2, but little improvement in confidence in self management of symptoms.

Conclusions

This work produced a PIL whose content refects current evidence and opinion, and which has been received favourably by patients and clinicians alike.
Grounded theory methodology in ophthalmic research
Authors: Smith Patricia J , Cox Carol L , Gibbons Helen
Published: May 2014

Grounded theory is primarily used for exploring a relatively unknown phenomenon. Grounded theory methodology attempts to discern the meaning of people's experiences which provides the depth and richness of data not acquired by other means. The central feature of grounded theory methodology that differentiates it from other research approaches is that data are collected first and analyzed with the aim of theory development rather than the usual approach, which is the development of a hypothesis first and then proving or disproving the hypothesis through testing following data collection.
Nursing management during intra-aterial therapy in children with retinoblastoma
Authors: Bergeron Marie-Paule , Binaghi Stefano , Beck-Popovic Maja , Munier Francis L. , Ruchat Gillian
Published: May 2014

Aims:

Retinoblastoma is a rare childhood cancer that can be life and vision threatening. This recently developed therapy, which injects melphalan into the ophthalmic artery, is only available in a few European centres. Our aim is to explain the procedure and some important nursing strategies for patient care.

Method:

Twelve children received superselective ophthalmic artery chemotherapy in our angiography unit under general anaesthesia. With careful planning between all practitioners a course of three sessions, one every 3 weeks, was organized with the parents. To assess the chemotherapy response and evaluate any adverse side effects the children were examined under general anaesthesia prior to each injection.

Results:

Each child has had their eye preserved with the highest visual potential at the time of reporting. Complications were encountered, fortunately without any serious consequences, and all children are doing well.

Conclusions:

Nursing strategies and intervention help prevent complications as a result of the procedure by maintaining a safe and secure environment. We also gain expertise by sharing skills in a multidisciplinary team.
Red eye: presentation, disease process and evidence-based care
Authors: Marsden Janet
Published: May 2014

Red eyes are a common presentation to ophthalmic services. This article aims to increase understanding of some of the more common, non traumatic ‘red eyes’. It describes the presenting features, disease process and evidence-based care and treatment of this group of patients and includes some ‘time out’ activities. Undertaking the reflective work suggested by these activities will assist the clinician in linking the theory presented here to patients seen in the practice environment and thus enable them to give effective, evidence-based care to this client group.
How computers can contribute to ophthalmic nursing
Authors: Martin Lene
Published: May 2014

This paper is a condensed version of a speech presented at the Moorefeld's Conference in January 2010 at the Royal Statistical Society in London. It describes my personal experiences from 23 years of research in ophthalmology and ophthalmic nursing, leading to three PhD theses, and is an example of the diversity in nursing research. My research shows that with the help of computers we can perform measurements in an exactly reproducible way, present data in a way adapted to users’ needs, analyze large data sets in no time at all, provide expert advice in real time, and increase collaboration between healthcare professionals. Computers can also make data accessible regardless of time and place.
Introducing the WHO's Safe Surgery Saves Lives initiative to ophthalmic nurses involved in ORBIS' training programmes
Authors: Machin Heather
Published: May 2014

Aim:

To monitor and improve patient safety systems within partner peri-operative nursing settings within developing regions of the world through the implementation the WHO's Safe Surgery Saves Lives initiative.

Method:

Prior to implementation of the Safe Surgery Saves Lives initiative ORBIS observed and assessed existing safety systems and the use of patient indicators within partner hospitals in 2010. Thereafter ORBIS provided training and conducted preliminary assessment of new skills within each hospital.

Results:

ORBIS' programmes had a significant impact on introducing, informing and instructing nurses within ORBIS' partner hospitals around the world of the importance of safe surgery checking within the peri-operative ophthalmic department.

Conclusion:

This initiative demonstrates the need for training and the implementation of safe site surgery checking systems within peri-operative ophthalmic departments within developing region partner hospitals around the world, and it highlights the ongoing need to continue such training.
A comparative study of the tonometers: Goldmann applanation, Perkins, Tono-Pen XL and Reichert 7CR
Authors: Eriksson E , Davidsson L , Brautaset R
Published: May 2014

Aim: The aim of this study was to compare and analyze the correlation between intraocular pressure (IOP) measured with Goldmann applanation tonometry (GAT), Perkins, Tono-Pen XL and the Reichert 7CR in healthy eyes.

Methods: 36 healthy voluntary subjects participated in the study, age raging from 21 to 59 years (mean age 33.2 years). In total 32 eyes were selected for analysis. Two optometrist using GAT, Perkins, Reichert 7CR and Tono-Pen XL measured four successive IOP readings in a cyclic permutation. The Reichert 7CR gives two values for IOP: a Goldmann correlated intraocular pressure (IOPg) and a corneal compensated intraocular pressure (IOPcc). Lidocaine hydrochloride 4% + fluorescein sodium 0.25% was instilled before measuring the IOP.

Results: Mean values: GAT 14.00 ± 2.00 mmHg (min=10 mmHg, max=18 mmHg); Perkins 13.50 ± 1.565 mmHg (min=11.00 mmHg, max=18.00 mmHg); Reichert 7CR (IOPg) 13.65 ± 2.581 mmHg (min=8.10 mmHg, max=17.90 mmHg); Reichert 7CR (IOPcc) 13.10 ± 2.22 mmHg (min=9.20 mmHg, max=18.40 mmHg) and Tono-Pen XL 14.50 ± 2.471 mmHg (min=9.00 mmHg, max=19.00 mmHg). Coefficient of determination as a function of GAT was calculated to: Perkins R2=0.63, IOPg R2=0.33, IOPcc R2=0.33 and Tono-Pen XL R2=0.35. Statistical analysis was performed with a repeated measure ANOVA test. The limits of agreement was set to 95%. A statistically signifcant difference in IOP readings was found between GAT vs IOPcc and Tono-Pen XL vs IOPcc (p<0.05).

Conclusions: All devices show reliable measurements of IOP in normal healthy eyes. Perkins, IOPg and Tono-Pen XL show agreement with GAT, but are not interchangeable. Perkins shows the highest correlation to GAT. IOPcc differs significantly from GAT and Tono-Pen XL, but within normal pressure limits this has no clinical relevance.
Ocular angiography — a brief overview
Authors: Hancock Richard , Hildred Richard
Published: May 2014

Ophthalmic imaging is an integral part of any ophthalmic outpatient department or clinic. Providing diganostic support and valuable teaching resources — ophthalmic imaging is essential in monitoring many retinal pathologies. Recent advances in technology has revolutionized ophthalmic photography. This article provides a brief history and overview of ophthalmic imaging.
Neuromyelitis optica: multiple sclerosis variant or independent disease?
Authors: Mutch Kerry
Published: May 2014

Neuromyelitis optica (NMO) is an inflammatory demyelinating disorder of the central nervous system. Relapses typically affect the optic nerves (uni/bilateral optic neuritis) and the spinal cord (myelitis). Disability often accrues with relapses and can occur early in the disease course. While there are many similarities with multiple sclerosis (MS), the identification of an antibody Aquaporin-4, with the water channel aquaporin-4 (AQP4) as its main target antigen, has led to advances in the understanding of NMO as an independent disease. These antibodies have been shown to be a highly specific and sensitive serum biomarker for NMO. This article summarizes the epidemiology, clinical features, diagnostic criteria, pathogenesis and treatment of NMO.
Ophthalmologists can predict the stage of diabetic nephropathy
Authors: Aljindan MY , Alghadyan AA
Published: May 2014

Background:

Diabetes mellitus affects different parts of the body due to its effect on the microvascular system. Both ophthalmologists and nephrologists participate in the management of these patients. Therefore it will be useful to compare the findings in the kidney and in the eye at different stages of the disease.

Methods:

Fifty patients were recruited to investigate the correlation between the progression of diabetic retinopathy and diabetic nephropathy. Complete history and ophthalmic examination were performed. Fundus photos and _fluorescein angiography were obtained. Urine samples were obtained over a 24 hour period and random urine samples were collected to determine the microalbuminuria, albumin/creatinine ratio.

Results:

Albuminuria was present in all tested patients to different levels. Eighty two percent of patients with proliferative diabetic retinopathy had a higher level of microalbuminuria, compared with 52.1% of patients with non-proliferative retinopathy. Albumin/creatinine ratio was found to have a similar pattern. There was a negative correlation between total serum protein and urine protein.

Conclusion:

There was a progressive increase in protein in the urine as the diabetic retinopathy progressed, suggesting parallel progression.
Blepharitis — a review of diagnosis and management
Authors: Din Nizar , Patel NN
Published: May 2014

Blepharitis is a common chronic inflammatory condition of the eyelid margin, but its true incidence and prevalence is unknown. It is classified anatomically into anterior blepharitis involving the anterior lid margin and posterior blepharitis involving meibomian gland dysfunction. Its presentation include: soreness, itchiness, burning sensation associated with scales and abnormal eye lash architecture. Diagnosis is made with a careful history and slit-lamp examination, with careful attention to the eyelid. Eye lashes can also be examined under high magnification for Demodex mite. Management includes conservative (eye-massaging with warm flannels and mild soap), and pharmacological interventions (topical and systemic antibiotics, with occasional use of topical steroids and cyclosporin A). This article will explore the epidemiology, clinical features, investigations and clinical management plans involved in blepharitis.
Risk factors for the development of glaucoma
Authors: McDermott Bill
Published: May 2014

National Institute for Health and Clinical Excellence guidance on the diagnosis and management of glaucoma states that health professionals involved in diagnosing and caring for this group of patients should be trained to make management decisions, and that this should include assessing for the risk factors for both chronic open-angle glaucoma (COAG) and for conversion from ocular hypertension (OHT). The full guidance, although it quotes many sources, does not go into great detail about what these risk factors are. This paper is designed to add to the knowledge of clinicians dealing with this patient group, and considers a number of suggested risk factors through an analysis of four major glaucoma studies, in collaboration with other supporting literature. Eleven possible risk factors are highlighted, and this synthesis of the literature will enable the practitioner who is assessing a patient to come to a formulation of the relative risk of each person developing glaucoma at the beginning of the patient journey so that an individualised pathway of care can be designed and carried out along with the patient, in order to achieve the required outcome.
NHS reforms and eye care services: quality, priority and competition
Authors: Diamond Jeremy P
Published: May 2014

NHS eye services will increasingly be exposed to competition under the 2012 Health and Social Care Act. The scale of this is widely underestimated, as private sector companies see UK eye care as lucrative.

NHS services can be at a disadvantage to private companies in tendering. Provision of medical eye care will increasingly be divided between public and private sector providers, with the NHS retaining complex cases.
Behavioural optometry: learning difficulties and the visual process
Authors: Hurst Caroline M.F.
Published: May 2014

Across the world, behavioural optometrists are working with patients with conditions including learning difficulties, dyslexia, dyspraxia, dyscalculia, attention deficit hyperactivity disorder (ADHD), autistic spectrum disdorder (ASD), strabismus, amblyopia and acquired brain injury (ABI).

This article describes some of the behavioural philosophy behind the development of vision, and the possibilities for improving visual skill and thus improving patient performance.
A review of the management options for periorbital basal cell carcinomas
Authors: Platts Marion , Danial Sheeba Putheen , Cook Anne , Cooper John
Published: May 2014

Skin cancer is the most common form of cancer and the incidence of basal cell carcinoma (BCC) is increasing each year ( Cancer Research UK, 2013 ). The incidence of BCC is higher among males, white populations and the older age groups ( Zak-Prelich et al, 2004 ). Anatomically, the head and neck are the most commonly affected sites, attributing to 80% of all reported areas of the body ( Wong et al, 2003 ). According to the British Dermatological Association (BAD) current guidelines ( Telfer, 2008 ), such BCCs are categorised as ‘high risk’ due to their locality and their potential for recurrence. The BAD guidelines propose that the majority of high-risk lesions be treated surgically or by radiotherapy.

The eyelids represent a particularly susceptible region for eyelid tumours, and approximately 90% of all eyelid cancers are BCCs ( Baxter et al, 2012 ). Presentation may be diverse; however, it is generally accepted that most BCCs are slow growing, locally invasive, and rarely metastasise, but some variants may be more aggressive.

As a form of intervention to remove lesions, surgically there are various options available, namely Mohs micrographic surgery, excision under frozen section control, Slow Mohs and excision with delayed reconstruction. The reconstruction method used by the oculoplastic surgeon will depend on the position and extent of the excised area.

This article describes the various treatment options for BCC in more detail, and relates treatment choice to appropriate patient-centred care.
Logging on to the world wide web of palliative care
Authors: Sweeny John
Published: May 2014

In the first of his regular internet columns for IJPN, John Sweeny surfs to some of the best palliative care sites on the world wide web. An example of on-line support (using a real-time ‘chat room’) is descibed, as is the concept of a web site ‘keeping in touch’ by automatically emailing newsletters to ‘net surfers who have previously used the site.
New Year, New outlook
Authors: Webber Jeanette
Published: May 2014

As this is the first edition of IJPN in 1998 I would like to take the opportunity of wishing you all a very happy and peaceful New Year.
Granulocyte colony-stimulating factor: extending the boundaries
Authors: Outhwaite Helen
Published: May 2014

In 1992 Heron predicted a revolution in cancer care with the clinical use of haematopoietic growth factors extending the boundaries of effective cancer care. That revolution seems to have occurred during the last six years and the use of growth factors is no longer thought of as extraordinary or experimental, but now forms a part of everyday practice in oncology and haematology units. Subsequently growth factors are frequently used in the home as patients participate more fully in their own care, and are often encountered by the community team. In this article a brief overview of granulocyte colony-stimulating factor (G-CSF) will be given – and some of the aspects of use in the community setting will be considered.
The Brits are coming
Authors: Sweeney John
Published: May 2014

Although still dominated by US sites the major British cancer organizations are now beginning to use the web to publicize their work and to provide new sources of information to support healthcare professionals, patients and carers.
Introducing palliative care: health professionals’ perceptions
Authors: Lowden Brian
Published: May 2014

The timing of the introduction of palliative care has been identified as an area in need of research. This study examines the meaning of palliative care, the process and timing of introducing palliative care into the healthcare setting and also the clinical indicators used. Data were collected from 80 healthcare professionals from four groups, i.e. GPs, district nurses, hospital nurses and doctors using a self-completing questionnaire. Analysis of the data was undertaken using content analysis and simple descriptive comparisons. The responses demonstrated a strong identification between palliative and terminal care. Medical staff viewed the importance of palliative care in terms of symptom management while nurses tended to view it in terms of emotional support. Nurses support for an earlier introduction of palliative care services in patient care was linked to their emphasis on emotional support. The weight given by all groups to the significance of symptoms (particularly pain management) in defining palliative care highlights these as central indicators in determining the introduction of palliative care. The survey also showed that there was a tendency to see palliative care as a specialist activity involving direct care rather than providing a resource for other professionals. The professionals responding to this survey did not universally appreciate the need for an early introduction of palliative care services to improve the quality of life of newly diagnosed patients but tended to emphasize the more traditional palliation of physical symptoms.
Stress management for breast cancer patients: service development
Authors: Hindley Maura , Johnston Sue
Published: May 2014

There is broad consensus that following cancer diagnosis, patients’ lives can be disrupted by diffuse, long-term psychosocial problems. There is also increasing evidence to suggest that group cognitive behavioural techniques, as used in stress management and relaxation may be an effective means of offering help. In the context of increasing interest in psychological interventions for patients suffering from cancer, this article discusses the rationale for a stress management programme, incorporating relaxation techniques, for women with breast cancer. The content and implementation of the programme are described and psychological approaches including stress management and relaxation techniques for the wellbeing of patients in cancer care are outlined.
The management of intravenous therapy in palliative care
Authors: Dougherty Lisa
Published: May 2014

Individuals with cancer often require intravenous therapy for diagnostic purposes; the administration of treatments during surgery, radiotherapy and chemotherapy; through to supportive palliative therapies. A wide range of vascular access devices are now available for the delivery of intravenous therapy, using either the peripheral or central venous routes, and can be selected to provide the patient’s therapy while maintaining their quality of life needs. Careful device selection should involve both the patient and the nurse in order to provide a safe and comfortable method of delivery of treatment as well as reducing the risk of complications.
The views of patients and carers on one palliative care service
Authors: Ingleton Christine
Published: May 2014

Palliative care is not a discrete activity but a complex nexus of interventions which may be implemented over time, in a wide array of settings and by a wide range of people. Any attempt to measure or assess the quality of a palliative care service is conceptually and methodologically fraught with difficulties. This article presents the findings of an evaluation of one community service in the English Midlands, from the perspective of patients and carers. A variety of methods were employed to solicit the views of patients and carers: non-participant observation, a questionnaire survey and interviews using a variant of the Critical Incident Technique. Four main analytical categories emerged from recounting incidents during the interviews: ‘being there’; ‘the right atmosphere’; ‘home from home’; and ‘we didn’t need to ask’. Findings suggest that patients and carers view the service as being needs led, prompt and flexibly tailored to meet their individual needs. The critical incident interview is a valuable tool by which to access user-generated and less tangible aspects of care and evaluate aspects of palliative care provision.
The implementation and evaluation of a job-share
Authors: Carey Angela , Tregunna Sonia
Published: May 2014

The Department of Health has acknowledged that the quality of health care delivery within the National Health Service (NHS) is closely associated with the quality of the employment practices in operation within the trusts. It is suggested that: ‘we will not get the best for patients unless we develop more family-friendly employment policies. They are essential to allow the NHS to make the best possible use of our resources as well as increasing the attractiveness of the NHS as an employer’ (NHS Consortium, 1998). Job sharing is an ideal way of fulfiling this proposal. This article reports on the implementation and evaluation of a recently introduced job-share in the Cornwall Macmillan Service. The authors conclude that job sharing can be successfully introduced in practice and that it may provide a valuable means of addressing some of the current manpower shortages within the NHS.
New challenges for IJPN and for our readers
Authors: Wilkinson Susie
Published: May 2014

An integral part of a quality service is ascertaining consumers’ views, feeding back the results to the consumer and revising the service in light of the evaluations. Towards the end of 1998, IJPN readers were asked to complete a questionnaire. The aim of the questionnaire was to obtain more information on the views of IJPN’s readers. For example, which sections of the journal are most popular, how much of the journal is read by each person, how often the journal was shared with colleagues, which were least liked areas and importantly areas of journal that the readers felt could be improved.
Informing the debate: chaplaincy and spiritual care in Scotland
Authors: Mitchell David , Sneddon Margaret
Published: May 2014

This article is based on research into how healthcare chaplains understand and practice spiritual care in Scotland. Scotland, with its own department of health and national church, is distinct within the United Kingdom. While a great deal has been written regarding spiritual care in the 1990s little has been contributed by chaplains, who seem unaware of the debate. The research demonstrates that Scottish chaplains are less religious in understanding and practice than might generally be expected, and also how they naturally embrace palliative care, with its approach to the individual and his/her family/carers. The findings show that chaplains are experienced in providing spiritual care in its widest sense. However, chaplains need to take the initiative to engage in the spiritual care debate, and increases their input in education and training. Those directing the spiritual care debate need not be afraid of being led down a religious road by consulting chaplains.
Referrals to the Marie Curie Nursing service in North Yorkshire
Authors: Hanratty Barbara , Feather Jenni , Ward Chris
Published: May 2014

District and Marie Curie nurses participated in a small-scale study to describe referrals to a Marie Curie service in one English health district over a 3-month period. The number of new patients referred was small, they were geographically clustered and had widely differing life expectancies. Anecdotal reports of difficulties with the ‘Nurselink’ referral system were not confirmed, and in situations where the system was in operation, Marie Curie nurses were more likely to speak directly to the referring nurse. The most frequently cited reason for referral was general nursing needs; however, Marie Curie nurses felt that they were most often involved to provide family support. These findings suggest that there may not be a shared understanding of the Marie Curie nurse's role, and that equity in community palliative nursing care merits examination. Defining and publicizing the role of the Marie Curie nurse, providing guidance for referrals and prioritizing communication between professionals are proposed not only to enhance the service locally but to ensure that the service is available to all. This article illustrates the value of research to identify ways to improve service delivery.
A pathway for patients who die within a week of hospice admission
Authors: Paterson Janice L , Hartman Harold W
Published: May 2014

Care pathways have recently been developed for hospice patients who die within one week of admission. This development was motivated by a number of factors. First, under managed care cost constraints, it is sometimes difficult to obtain early hospice admission approval because of certain reimbursement regulations. Second, patient and family wishes change during the illness trajectory as patients move through the stages of death and dying. Third, and most important to the care-giver is that the philosophy adopted within care pathways advocates that patients should not suffer at the end of life. This article outlines the rationale for the formulation of care pathways and describes a care pathway developed for a specific group of patients.
Do the right thing — virtually
Authors: Sweeney John
Published: May 2014

Although ethical concerns are never far away with regard to all aspects of health care, end-of-life situations, that often bring concerns about autonomy, disclosure and communication into sharp focus for practitioners, are part of the challenge of providing palliative care collaboratively with patients and other professionals.
Paediatric palliative care comes of age
Authors: Sweeney John
Published: May 2014

With its colourful layout and detailed explanations this site aims to raise the profile of children’s palliative care, which has emerged as a speciality in the last decade. Although some elements of this site remain under construction, if this area of nursing interests you then it is one for your hotlist.
Rehabilitation and specialist palliative care
Authors: Hopkins KF , Tookman AJ
Published: May 2014

Enabling individuals to achieve their maximum potential and quality of life following a diagnosis of advanced cancer, has long been a stated aim of palliative care. Increased life expectancy and the introduction of specialist palliative care to patients at an earlier stage of their illness presents professionals in the specialty with new challenges in meeting the need for rehabilitative care. This article examines some of the recent developments affecting the provision of rehabilitative care and describes one specialist palliative care unit’s response to the challenge, highlighting the role of a nurse-led clinic within the service framework.
Evaluating a palliative care education project in nursing homes
Authors: Froggatt Katherine
Published: May 2014

This article reports on an evaluation of a 2-year palliative care education project for nursing home staff. The aim of the project was to provide education for all levels of nursing home staff so that the care of dying residents could be improved. In order to ascertain the outcomes of the initiative two approaches to data collection were adopted. Case studies of four participating nursing homes were undertaken, involving a period of participant observation and interviews with staff members. A postal survey of the participating nursing homes and non-participating nursing homes from the same geographical region was also carried out. The impact of the project is described, identifying how the care of residents and their relatives was affected, the differing impact on the participating staff groups and the degree to which the organizational practices of the nursing homes changed. Although the project influenced course members’ practice, the provision of courses such as these was recognized to be insufficient to ensure widespread organizational changes. Questions regarding the effectiveness of education as an agent of organizational change were raised throughout the project and the evaluation.
Digital discussions on death and dying
Authors: Sweeney John
Published: May 2014

This site archives material from a US Public Broadcasting Service television production of the same name. It indicates how old and new media can combine to offer a new and wider format for discussion of the issues surrounding care of the dying.
The legal aspect of living wills: a need for clarity
Authors: Dimond Bridgit
Published: May 2014

A living will, also known as an advanced refusal of treatment or an advanced statement, is a declaration by an individual of what he/she would not wish to have happen to him/her should he/she lose the competence to make his/her own decisions. It is like an ordinary will, except that it applies during a person’s life when he/she is mentally incompetent, for instance when in a coma or suffering from dementia. Living wills have been used to define a person’s wishes in respect of future medical care.
Truth telling and the dying patient: a conspiracy of silence?
Authors: Costello John
Published: May 2014

This article report on the findings of an ethnographic study of the terminal care of older dying patients in hospital. The study focused on the information given to 22 patients diagnosed with a life-threatening illness. Using data from participant observation and ethnographic interviews, the research examined the strategies used to control information about terminal diagnosis. Several ethical implications were raised, such as truth telling and collusion. The article examines the implications of implementing ward disclosure norms based on closed awareness. It also considers the issues associated with developing a truth-telling culture.
Logging on at life’s end
Authors: Sweeney John
Published: May 2014

The Missoula Demonstration Project has been running since 1996 and attempts to examine the experiences of people who are dying and those caring for them — be they professional or not. It aims to show that by involving the wider community, care of the dying can be self-determined, safe and comfortable, and also that grief and other losses surrounding life’s end offer the possibility of positive change. The site details the work of the project in considerable detail and a clear and consistent manner, making its use a pleasure.
Sexuality in cancer and palliative care 2: exploring the issues
Authors: Rice Ann Marie
Published: May 2014

The first article in this series discussed the effects of cancer and its treatment of sexual function. However, impaired sexual function may also occur in the absence of any specific physiological change. As well as the patients’ perceptions of their disease, the attitudes of society and health care professionals, and the environment and culture within health care may contribute to sexual dysfunction in patients with cancer. This article will explore some of the wider issues surrounding sexuality and examine some of the reasons why this subject is so often poorly addressed.
A wealth of resources for palliative care
Authors: Gamlin Richard
Published: May 2014

I am delighted to be taking over Web Words from John Sweeney. In addition to reviewing websites, on occasions, I intend to discuss other aspects of the internet that may have value in palliative care.
The ethics and practicalities of consent in palliative care research: an overview
Authors: Rees Elizabeth
Published: May 2014

In order to ensure further developments and improvements are made in palliative care, research is essential. Palliative care is no different from other specialties in that it needs a scientific foundation on which to base its practice. Research in palliative care is particularly difficult, however, because of the population under study. Research in palliative care presents a ‘minefield’ of ethical issues. One of the major issues is how to obtain informed consent from patients. This article discusses the practical and ethical issues surrounding consent for quantitative research in palliative care, and offers some guidance to health professionals considering the issue with patients.
Guidelines in respect of advance directives: the position in England
Authors: Travis Sara , Mason Jill , Mallett Jane , Laverty Diane
Published: May 2014

The fundamental aim of the advance directive is to provide a means for the patient to continue to exercise autonomy and shape the end of his/her life. The principle is not new. Patients who are aware of approaching death have for many years discussed with their health-care team how they wish to be treated. The advance directive registers these views in a more formal way. However, inconsistencies persist in the understanding of the legal issues around advance directives in the UK, and suggest that national guidelines would encourage National Health Service trusts to develop local policies to improve understanding and compliance with the law. This article draws on English law to address misunderstandings and proposes which information advance directives should include.
Community palliative care clinical nurse specialists’ descriptions of stress in their work
Authors: Newton Jenni , Waters Viv
Published: May 2014

This study analysed the lived experiences of work stress of 21 community palliative care clinical nurse specialists from four centres in urban Essex, UK. Data were collected using an open-ended questionnaire and semi-structured interviews. Three major themes emerged: pressure of workload; relationships with health professionals; and the impact of the sadness of the client group. The pressure of workload was associated with nine sub-themes including staff shortages, client’s or professionals’ misperceptions of role, changing role, and erosion of normal support systems at work or at home. Relationships with some general practitioners seemed to cause most difficulty and social services seemed to have different priorities and to respond slowly. The impact of the sadness of the client group was only seen in four distinct situations. An overwork stress spiral is described that provides a salutary warning for managers, but also offers interesting solutions
Policy and practice: recognition for palliative care
Authors: Gamlin Richard
Published: May 2014

Although this website does not deal solely with palliative care information it is an important source of information for those who work in the speciality. It is a useful starting point for those who are looking for information about evidence-based health care.
Palliative care nurses’ perceptions of good and bad deaths and care expectations: a qualitative analysis
Authors: Kristjanson Linda J , McPhee Irene , Pickstock Sarah , Wilson Donna , Oldham Lynn , Martin Karen
Published: May 2014

Individuals who are involved with the death of a person with a terminal illness will often classify the death as either ‘good’ or ‘bad’. Families and health-care practitioners assess many factors when determining their ‘success’ or ‘failure’ in assisting someone in the terminal phase. Palliative care nurses are particularly vulnerable to self-assessments about care of the dying, because death is a daily occurrence. Feelings of failure, unmet expectations and feelings of regret about not being able to prevent a traumatic death may be a source of stress for palliative care nurses and may affect their abilities to function effectively. This article reports the findings of a study involving interviews with 20 palliative care nurses to determine their perceptions of a good and bad death. The study also examined the expectations they hold of themselves and that they believe others hold of them in helping patients to attain a good death. Clinical implications are discussed based on these findings.
Pain and palliative care: resources to empower patients
Authors: Gamlin Richard
Published: May 2014

As the general public becomes accustomed to the technological developments that have occured in recent years, patients are increasingly using the internet to find answers to their questions about health care. Some professionals appear to find this challenging and respond by criticizing the quality of the information available. A more helpful response would be for professionals to become familiar with a range of reputable websites that they would feel confident to recommend and discuss with their patients and families. Below are three websites that contain useful answers to questions regarding palliative care often posed by, or on the minds of, patients, their families and their informal carers.
Congress shows changing face of palliative care
Authors: Pollard Tom , Wilkinson Susie
Published: May 2014

The 7th congress of the European Association for Palliative Care in Palermo, Sicily offered not only a break from the dismal British weather, but also a snapshot of the current state of palliative care in Europe and beyond. The picture presented was of a healthy, mature and confident discipline, which can encompass professionals from a wide range of backgrounds: medicine, nursing, social care, pastoral care. Over 450 posters and 260 presentations highlighted the diversity of palliative care practice, which perhaps more than any other specialty reflects the prevailing views of society in the country in which it is practised. Nowhere is this more obvious than in the ethics of palliative care.
Preparation, information and liaison: conducting successful research in palliative care
Authors: Daniels Lilian E , Exley Catherine
Published: May 2014

Palliative care professionals are increasingly exposed to, and under pressure to participate in, research to promote evidence-based practice. This may pose challenges and tensions within normal working practices. This article draws on the results of a small qualitative study that explored the experiences of a group of specialist nurses at an independent hospice involved in palliative care research. By reflecting on their experiences and the difficulties they encountered, primarily with regard to obtaining informed consent from patients to take part in the research, this article explores issues relevant to practitioners and researchers when conducting palliative care research involving patients. It concludes by suggesting guidelines for conducting good quality research.
Making the most of very little
Authors: Pollard Tom
Published: May 2014

Tuesday 5 June saw the 20th anniversary of the first published account of the disease which would come to be known as HIV/AIDS. The story of its rapid and devastating global spread since then will be familiar to most people. In Britain and much of Western Europe, the disease is no longer the great cause for concern it once was. In the UK there have only been a few tens of thousands of HIV infections, and the panic of the early years of the epidemic has been replaced by complacency, as a result of which infection rates are increasing again after several years of decline. Yet elsewhere the epidemic rages unabated.
Ethical issues in palliative care
Authors: Gamlin Richard
Published: May 2014

Ethical issues are a constant companion and a constant challenge to those who provide palliative care throughout the world. Opportunities for learning how to deal with ethical issues regularly present themselves in our day-to-day work. Those who have travelled to different countries as part of their work will have learned how political, economic and religious differences influence the way in which ethical issues are approached and resolved.
Joe’s story: reflections on a difficult interaction between a nurse and a patient’s wife
Authors: Pullen Mary Louise
Published: May 2014

Unfortunately, not all nursing interactions are positive. Incidents can occur that leave nurses with a variety of negative emotions. This paper examines one such interaction that occurred between the author, a dying patient and the patient’S wife. The author reflects on and attempts to explain the feelings aroused by the situation through the use of psychodynamic theories. The characteristic personality and coping styles of the main participants are discussed. Issues relating to staff support are also highlighted.
Good death? An exploration of newly qualified nurses’ understanding of good death
Authors: Hopkinson Jane , Hallett Christine
Published: May 2014

The dominant professional understanding of good death is death where symptoms are controlled, the inevitability of death has been accepted and preparations have been made leading to peace for all involved. It seems surprising, in a pluralistic society, that there might be such a clear common understanding of good death. This study looks at the understandings of good death voiced by 28 staff nurses who were interviewed about their experiences of caring for dying people in hospital. The findings suggest that a nurse’S understanding of good death had elements that were shared with her colleagues, but also that there was a personal understandings of a good death. The concept of good death is perhaps a reduction that leads to an incorrect assumption of a shared understanding of the acceptable way to care for a dying person. The concept of ‘personally ideal death’ is proposed as a refinement of good death that recognises that the beliefs and values of each individual influences what they understand to be acceptable death.
The palliative care needs of people with intellectual disabilities: a case study
Authors: Tuffrey-Wijne Irene
Published: May 2014

This article describes a case study that aimed to consider the unique needs of a client who has intellectual disabilities and a terminal illness. Data collection included semi-structured interviews with the client and professionals involved in his care. Five broad sets of themes emerged from these interviews. Although these are not unique to the rapidly evolving field of palliative care, they are less familiar within the specialism of intellectual disabilities, i.e. difficulties and delays around diagnosing the illness, consent issues, conflicts between the carers and the family, truth-telling, and the need for professional support. Professionals who work with a person with intellectual disabilities and a terminal illness need to be aware that special issues may arise. The effects of potential problems with comprehension and communication need to be assessed individually. A close collaboration between all professionals, carers, family and the client, and the mutual sharing of expertise, is essential to ensure the best possible care.
Palliative care for prisoners
Authors: Gamlin Richard
Published: May 2014

Palliative care for all has been an ideal we have strived for over many years. If we are to realize this ideal we cannot discriminate – although some would argue that we are required to because of resource challenges. A few years ago an incident in a Welsh hospice brought the issue of palliative care for prisoners into the news and opened up an important debate. A young man was transferred to a hospice in the last few days of his life. His prison officers, working to protocols, insisted he remained restrained even though, according to the hospice staff, he was in no fit state to attempt to escape. Thankfully, following this incident, national debate and close working between the UK National Health Service and Home Office, practice changed and new protocols developed.
Do not attempt resuscitation: issues and policies
Authors: Gamlin Richard
Published: May 2014

Several high profile cases in the British media have brought ‘do not attempt resuscitation’ (DNAR) policies to the attention of the public. One example involved a patient in her late sixties receiving chemotherapy for gastric cancer. She was admitted to hospital with septicaemia. After treatment, she discovered that ‘inappropriate for resuscitation’ had been written in her notes.
Interprofessional working in hospice day care and the patients’ experience of the service
Authors: Lee Louise
Published: May 2014

This in-depth study of hospice day care considers professional team working and patient experience of the service. It includes an analysis of how patients’ time is spent. The qualitative single case study design involved patient and staff interviews, observations and document analysis. A theoretical framework of interprofessional working informed the study. Analysis of the data revealed a range of goals, variable communication patterns and the existence of core and extended teams. The results challenge the theoretical literature by suggesting that the presence of a team structure alone did not promote interprofessional working. Patients were also seen as integral members of the team. Their experience of day care was a social one, with a wide range of activities available within a holistic framework. While some patients identified unmet needs, day care was largely seen as positive. This was despite interprofessional working not clearly being identified in the results. Suggestions for future research are made and implications for practice discussed.
The wisdom of children
Authors: Davies Betty
Published: May 2014

I have always been amazed at the insight of children, especially those who are suffering from a progressive, life-limiting condition. Such children are much wiser than their years; often, much wiser than their parents or the health professionals who care for them. Through encounters with needle pokes, nausea, fatigue, hair loss, absences from school, separation from friends and family, loneliness and fear, very ill children often come to realize they are not going to get better. It seems their appreciation of mystery and their lack of cynicism allows them to see what adults can no longer see, and they are able to speak simple truths that are at the heart of wisdom.