bluuebunny/crossref_metadata_2025 huggingface dataset:
Telemedicine in community-based palliative care: evaluation of a videolink teleconference project
Authors: Saysell Emma , Routley Claire
Published: May 2014

A national shortage of consultants in palliative medicine in the UK has led St David’s Foundation Hospice Care to begin an innovative telemedicine project. This enabled the foundation’s clinical nurse specialists (CNSs) in palliative care to access consultant advice and support. Each week the CNSs held a 2-hour teleconference session with a consultant in palliative medicine by videolink to discuss patients with one or more unresolved symptoms or significant palliative care issues. The use of teleconference time was structured and targeted, which allowed the limited time available to be used productively. After each session, the participants completed a number of questionnaires that were used, with data collected during focus-group sessions, to analyse the project. Despite the relatively new and complex technology, the nurses involved were very comfortable using the teleconferencing equipment. All the nurses involved rated the advice given during the teleconferences as helpful or very helpful. The project has shown that telemedicine can provide a useful, and probably cost- and time-effective, addition to current services.
The experience of research participation for family caregivers of palliative care cancer patients
Authors: Hudson Peter
Published: May 2014

There have been concerns raised regarding the ethical merit of involving dying patients and family caregivers as research participants. This study sought feedback from 103 primary family caregivers who had participated in a longitudinal research project. Caregivers were sent a questionnaire regarding the benefits and negative aspects associated with participating in research while also supporting or having supported a relative dying of cancer. The study identified that almost three quarters (71.1%) of the 45 respondents reported benefits of being involved in research and the majority (88.9%) cited no negative aspects associated with research participation. Findings of the study suggest that it is pertinent to invite family caregivers to be involved in palliative care research. Moreover, this study demonstrated that not only is it probably safe for family caregivers to be involved in research but also that many participants actually derive benefits.
Using Edward de Bono’s six hats game to aid critical thinking and reflection in palliative care
Authors: Kenny Lesley J
Published: May 2014

This article describes the use of a creative thinking game to stimulate critical thinking and reflection with qualified health professionals undertaking palliative care education. The importance of reflective practice in nursing is well documented and numerous models are available. However, the author as a nurse teacher has found that many of these models are either too simple or too complex to be valuable in practice. The six hats game, devised by Edward de Bono, is a method that stimulates a variety of types of thinking and when used as a means of reflection helps students to become more critical about their practice. Using this game with a palliative care case study the author demonstrates how thinking more creatively about the patients perceived needs and problems can assist in developing reflective skills. The article concludes with a discussion on some of the challenges of using this method and suggestions for future practical uses.
A commentary on ‘Administration of as required subcutaneous medications by lay carers’
Authors: Saltmarsh Philip
Published: May 2014

In this article commentary Philip Saltmarsh discusses some issues arising from an initiative to provide guidance for community nurses involved in the administration of as required medication by lay carers.
Hospice at home 2: evaluating a crisis intervention service
Authors: Grady Anna , Travers Elizabeth
Published: May 2014

This article presents an evaluation of a rapid-response crisis-intervention service, hospice at home (H@H), for patients with advanced cancer. The project took place in Glasgow, UK, between July 1999 and May 2001. An integral part of the H@H project was the concurrent evaluation, which attempted to explore a range of service and user outcomes. The service was able to prevent admission to, or facilitate discharge from, institutional care on 62 occasions. The evaluation found significant improvements in some areas of pain and symptom management. High levels of satisfaction were recorded by all service users. A partial cost analysis revealed that the medical and nursing support costs for the H@H service were greater than for traditional hospital/hospice based care. However, the additional cost of H@H would have been substantially reduced if throughput had been higher. The H@H project team agreed that a valuable lesson learned from the project was the importance of involving all key players from the outset when determining the requirements of a new service initiative.
The existential slap – a crisis of disclosure
Authors: Coyle Nessa
Published: May 2014

For the cancer patient many occasions of temporary victory over imminent death may exist. However, at some point it becomes undeniably clear to most patients that the only outcome of their situation is death – existence will cease. The moment of this awareness I have named the ‘existential slap’.
An evaluation of dependency assessment: experiences of staff, patients and carers in a UK hospice
Authors: Quinn Helen , Allan Helen , Bryan Karen
Published: May 2014

Aim To evaluate the experiences of health-care professionals, service users and carers of service users from a UK hospice in relation to dependency assessment.

Design Qualitative evaluation.

Sample Purposive, convenience sample of hospice staff, patients receiving hospice services and carers of patients receiving hospice services.

Methods Focus group interviews with hospice staff and carers of hospice service users. Individual interviews with patients.

Results Staff felt the tool used produced inaccurate results, in part because of omissions in content. They did not perceive the data produced affected working practice, e.g. staffing levels. Patients described unobtrusive assessment and stated their needs were met. Carers reported feelings of isolation. They also described differing information and support needs from the patients.

Conclusion Further research is required to improve the validity of dependency data collection. Further investigation of carer assessment is also justified.
Spiritual distress in a terminally ill patient with breast cancer
Authors: Loh Keng Yin
Published: May 2014

For terminally ill patients, suffering can relate to issues beyond the physical body, such as psychological and spiritual distress. The North American Nursing Diagnosis Association defines spiritual distress as a disruption in the life principle, that, when intact, suffuses a person’s entire self, integrating and transcending biological and psychosocial aspects (Mesnikoff, 2002). Patients in spiritual distress express concern about the meaning of life, death and suffering, and may state that their illness is a punishment. They may be angry, cry, be withdrawn or show apathy. This case study concerns a 45-year-old Malaysian Muslim woman with terminal breast cancer. The woman presented with spiritual distress manifested as anger and deep denial.
Do nurses respect themselves enough?
Authors: Cooley Candy
Published: May 2014

A number of incidents in the UK have altered the general public’s perception of the NHS. There have been major problems surrounding health professionals’ conduct, such as the conviction of Dr Harold Shipman for the murder of a number of his elderly patients. There are also concerns surrounding hygiene with almost epidemic numbers of patients acquiring infections in hospital. Complaints to the Ombudsman have never been higher, with lack of communication being identified as the biggest area of concern. The government has responded by initiating strategies such as the NHS Plan, which directs hospital trusts to initiate communication policies, and the introduction of the Modern Matron, responsible for improving the environment.
Dignity-conserving care: application of research findings to practice
Authors: McClement Susan E , Chochinov Harvey M , Hack Thomas F , Kristjanson Linda J , Harlos Mike
Published: May 2014

A central tenet of palliative care is to help people die with ‘dignity’. The widespread use of this term presupposes that this construct is well understood from the perspective of the terminally ill, and that the factors that bolster or erode dignity are known. However, the paucity of research related to these issues suggests otherwise. Over the past 5 years, this research team, headed by Dr Chochinov, has undertaken a programme of research aimed at explicating what dignity means to those who are terminally ill, and identifying those factors that support and undermine dignity in this patient population. This article will provide a synopsis of that work, with an emphasis on the application of research findings for practice.
The euthanasia debate: more strong views
Authors: Smyth Dion
Published: May 2014

The increasing advances and availability of technological and biomedical means to support life has meant that clinical practitioners have to contend with many complex and controversial moral and ethical issues. Euthanasia is a particularly contentious topic so this month’s Web Words continues our look at how it is considered on the net.
The use of syringe drivers: a paediatric perspective
Authors: McNeilly Patricia , Price Jayne , McCloskey Sharon
Published: May 2014

Successful symptom management in the palliative and terminal care of patients frequently involves the use of syringe drivers. A wealth of literature exists to support their use in the care of adult patients both within specialist palliative care inpatient units and in the community setting. However, little has been written regarding their use in the paediatric population. The purpose of this article is to examine specific issues concerning the use of syringe drivers when caring for children and young people in the terminal phase of illness.
Breaking bad news: part 2
Authors: Smythe Dion
Published: May 2014

There is a saying that ‘if you can’t communicate, it doesn’t matter what you know’. Breaking bad news badly usually means attempting to transfer what a health professional knows – the facts and figures about a diagnosis or treatment – without any acknowledgement of, and communication about, the distress and despair the patient and their family, and often the professional imparting this news, are feeling.
What influences decisions around the place of care for terminally ill cancer patients?
Authors: McCall Kathryn , Rice Ann Marie
Published: May 2014

Aim To explore what factors influence decisions around the place of care for terminally ill cancer patients in a rural area in West Highland, Scotland.

Design This was a descriptive, explorative, qualitative study using taped semistructured interviews.

Sample A purposive sample of eight terminally ill cancer patients.

Results The determinants for the desired place of care were organized into three main themes: carer resource and support; past experiences with death; and communication of wishes. The study evidenced that individuals often changed their preferred place of care at the end of life as the need for care increased. Those involved in the study found a therapeutic and emotional benefit by being able to discuss end-of-life care in a safe and secure environment.

Conclusion For many, the preference for place of care at the end of life was conditional on how the process of their disease advanced. It was not a clear and positive choice, but it did include the desire to be cared for in a place other than home. Carer availability and ability were influencing factors; however, decisions reflected the patient’s perceptions of resources rather than those of the carer, even when the carer was available and able. The challenge to those who work with the terminally ill is to develop effective interventions to facilitate discourses around end-of-life care, and thereafter, where possible, to facilitate those preferences.
Information at your fingertips: making the most of the internet
Authors: Sweeney John
Published: May 2014

According to the Oxford Internet Institute 60% of us are actively using the internet and finding it beneficial ( http://www.oii.ox.ac.uk/ ). Those who remain hostile to it continue to be those who do not use it and this third of the population are looking less likely to ever get online.
Palliative care: roles and perceptions
Authors: Auty Simon
Published: May 2014

My role as Macmillan GP facilitator involves speaking to health-care and social work professionals, carers and others to raise the profile of best practice in palliative care. During my educational visits, one of my teaching slides asks the audience, which may be mixed professionals, how they see the role of the different professionals in palliative care. Responses have raised some interesting points regarding the stereotypical views groups have of each other and the barriers these may form to effective care.
Nursing research: do we still need to be concerned?
Authors: Payne Sheila
Published: May 2014

This month sees the launch of the 10th anniversary issue of the International Journal of Palliative Nursing. It is with great pleasure that I have agreed to reflect upon how research in palliative care nursing has developed over the last decade.
Speech and language therapists in palliative care: what do we have to offer?
Authors: Eckman Samantha , Roe Justin
Published: May 2014

Speech and language therapists (SLTs) are specialists in the management of communication and swallowing disorders (dysphagia), however few are members of acute and community specialist palliative care teams in the UK. Although numbers of SLTs working in palliative care are increasing, there is a need for education and research to support service development and promote understanding of their role. This profile piece outlines what SLTs have to offer patients with palliative care needs and describes how their role in palliative care is increasing in the UK.
Identifying educational needs in end-of-life care for staff and families of residents in care facilities
Authors: Brazil Kevin , Vohra Julie Uma
Published: May 2014

Aim The purpose of this article is to describe educational needs in end-of-life (EoL) care for staff and families of residents in long-term care (LTC) facilities in the province of Ontario, Canada. Barriers to providing end-of-life care education in LTC facilities are also identified.

Design, setting and participants Cross-sectional survey of directors of care in all licensed LTC facilities in the province of Ontario, Canada.

Results Directors of care from 426 (76.9% response rate) licensed LTC facilities completed a postal-survey questionnaire. Topics identified as very important for staff education included pain and symptom management and communication with family members about EoL care. Priorities for family education included respecting the residents’ expressed wishes for care and communication about EoL care. Having sufficient institutional resources was identified as a major barrier to providing continuing education to both staff and families.

Conclusion Through examining educational needs in EoL care this study identified an environment of inadequate staffing and over-burdened care providers. The importance of increased staffing concomitant with education is a priority for LTC facilities.
Patient consent and implantable cardioverter defibrillators: some palliative care implications
Authors: Withell Bridget
Published: May 2014

The process of gaining informed consent from a patient is both complex and challenging, and the subsequent validity of that consent may be ethically open to question. Part of the process involves disclosure of risk, but with new devices the longer-term risks may not be fully known or explained to patients. In addition, with implantable cardioverter defibrillators (ICDs), it is the intended effect of the device (rather than an undesired side-effect) that becomes a potential risk and source of distress at the end of life. The duration of consent to treatment is another dimension that is often overlooked. The case study discussed within this article suggests that consent of an active device, such as an ICD, needs reviewing at times of significant change in condition, while the patient is still competent to make an autonomous decision.
Nurses and palliation in the community: the current discourse
Authors: Rose Jayln , Glass Nel
Published: May 2014

A core component of community nursing practice in Australia is the provision of palliative care, however this area of practice has been minimally researched. We, therefore, undertook a broader review of the contemporary literature in community nursing; palliative nursing; and community nursing palliative care. Literature was searched electronically in OVID, CINAHL and nursing databases and manually in relevant journals. Findings revealed community and palliative care nursing to be both complex and challenging. Community and palliative nurses ideals for care are compromised by competing practice demands. Changing health systems and philosophical views, limited resources and the perceived ‘visibility/invisibility’ polarity are identified as major job stressors. Therapeutic use of ‘self’ and interpersonal communication are recognized as contributing to job satisfaction. Community nurses providing palliative care is as an under researched area yet it is a role that arguably requires critical understanding and recognition. Further research is needed into the relationship between emotional wellbeing and professional satisfaction for community and palliative care nurses providing palliation.
Evaluation of the end-of-life nursing education consortium project in the USA
Authors: Ferrell Betty R , Virani Rose , Malloy Pam
Published: May 2014

Care of patients at the end of life is contingent on adequate preparation of health care providers. Nursing, as the predominant caring profession in end-of-life (EOL) care, must achieve competence in physical and psychosocial care of patients and families facing terminal illness. Previous research has demonstrated that nursing education has not prepared nurses to provide optimum EOL care. To date, there has not been a unified or organized effort to broadly address the preparation of nurses in EOL care. This article describes one national project, the End-of-Life Nursing Education Consortium (ELNEC), which was developed as a comprehensive effort to improve EOL care by nurses in the United States. The ELNEC project consists of EOL education for various nursing audiences: the undergraduate faculty; continuing education providers; pediatrics; oncology; and the graduate faculty. This organized effort is a major step towards strengthening nursing knowledge in EOL care to improve care of the dying.
Thinking about nursing practice and culture: syringe drivers
Authors: Shaw Susan , Meek Fraser
Published: May 2014

We recently set up a new inpatient unit and this involved making various decisions about our philosophy and approach to nursing practice (Shaw et al, 2007). One of the clinical issues we had to deal with was how to manage syringe drivers.

Syringe drivers had been used within the community for many years, and local guidelines about their use along with various policies and procedures existed. We considered all of this information and asked some critical questions about it. One of the most practical issues we explored was the volume (or length) of infusions. This single issue and our response to it caused a significant amount of reaction among colleagues. We have written this article in an attempt to explain some of the issues relating to nursing practice and culture as we perceive them and to raise questions about why and how professionals sometimes respond to changes in practice.
Granting death with dignity: patient, family and professional prespectives
Authors: Leung Doris
Published: May 2014

Dignity is a complex construct lacking clear meaning. While conceptualising dignity as a basic right is useful in determining and justifying social and economic costs of health care, it is insufficient in considerations of personal dignity at the end of life. There is a dissonance between how dignity is shown to matter to healthcare professionals compared to patients. Furthermore, dignity is not clearly linked in the empirical literature to variables of quality of life and to a dignified death. Current studies about the construct of dignity enhance understanding of how we extrinsically construct moral worth, but not of how individuals interpret intrinsic moral worth through maintaining their personal integrity and attitudes of being cared for. References to key qualitative studies illuminate how clinicians ethically negotiate a creation of dying with dignity. As one’s personal integrity fades, caregivers (i.e. healthcare providers, family and friends) are challenged to recognise and attend to the individual’s vulnerability. I suggest that caregivers nurture personal integrity – through gestures that remember and honour aspects of the other as he/she was once known. Perhaps only through others can dying people be granted death with a sense of personal dignity.
Intuition in clinical decision-making: a psychological penumbra
Authors: Nyatanga Brian , Vocht Hilde de
Published: May 2014

Aim: To demonstrate the link between intuition and cognitive as well as physiological processes as a way of helping to explain how intuition plays a part in complex decision-making.

Background: Over the years, numerous debates and discussions have raged about how intuition contributes to the making of complex clinical decisions. Intuition continues to be poorly understood, and in some cases, it is still considered the work of our sixth sense. Although experts make accurate intuitive decisions, they are not always able to articulate how they have arrived at a particular decision.

Method: We use two scientific experiments to demonstrate how research has helped to explain the cognitive and physiological functions of intuition in relation to complex decision-making. We discuss the role of unconscious thought in intuitive decision-making. Finally, we show that intuition can be a valuable component of expert practice.

Conclusion: Intuition has traceable cognitive and physiological bases that help us understand how we use it as a basis for making complex clinical decisions. Experts, especially those working in acute and palliative care, where there are difficult ethical as well as clinical patients situations, can benefit from using intuitive ideas to arrive at complex decisions.
Supporting children and families facing the death of a parent: part 1
Authors: Kennedy Catriona , McIntyre Rosemary , Worth Allison , Hogg Rhona
Published: May 2014

Aim: To present findings from a review of key literature and from a scoping of current provision of support for children facing the death of a parent. A summary of the findings from these is reported here.

Methods: To set out the background and context to the evaluation of a new service aimed at supporting children and families facing the loss of a parent from cancer, key literature was reviewed and a scoping of current bereavement support for children and families was conducted using online searching, telephone and face-to-face communications.

Findings: The review processes uncovered a range of national and local bereavement services. Bereavement was reported as a normal life event and part of human experience. Health, education and social services personnel need to respond to individual needs, accepting that not all bereaved children require complex, long-term interventions.

Conclusions: At national and global levels there was recognition that the needs of bereaved children require careful assessment. A complex range of initiatives have been developed across the UK aimed at supporting children facing the death of a family member. The fragmented nature of provision makes it difficult to be comprehensive or all-inclusive when describing service provision in this area.
Communication difficulties and intellectual disability in end-of-life care
Authors: Tuffrey-Wijne Irene , McEnhill Linda
Published: May 2014

Around 1–3% of the world’s population has intellectual disabilities (Mash and Wolfe, 2004). Communication difficulties are a major obstacle in providing effective palliative care to this group. Problems may arise due to a lack of comprehension and a lack of verbal skills, affecting assessment and the provision of psychosocial support. This paper maps the communication difficulties experienced by people with intellectual disabilities within a palliative care setting, drawing on several research studies carried out by the authors. These include the time-consuming nature of effective communication, and difficulties around breaking bad news. The paper explores the ways in which people with intellectual disabilities may (mis)understand verbal information. Strategies for managing communication difficulties are outlined, including ways to use clear, unambiguous language. The authors conclude that the ability to communicate effectively with people with intellectual disabilities is a useful skill that will benefit all patients.
Supporting children and families facing the death of a parent: part 2
Authors: Kennedy Catriona , McIntyre Rosemary , Worth Allison , Hogg Rhona
Published: May 2014

Aim: To report on the views of children, parents and key stakeholders of a new bereavement support service for families where a parent is dying from cancer.

Study design: A qualitative pre- and post-intervention evaluation design was used. Case study methods allowed multiple perspectives to be accessed so broadening the scope of the evaluation.

Sample and setting: A purposeful sample of six families was recruited from the community palliative care service. Each case study comprised a family, a health professional and the family support worker. Six key stakeholders also contributed data.

Methods: Data gathering included individual and family group interviews, non-participant observation and interviews with nominated health professionals, key stakeholders and the family support worker. Analysis of pre- and post-intervention data were supported by QSR NVivo.

Findings: Children and families with complex and/or enduring needs benefited from the specialist expertise and interventions provided by this service.

Conclusions: Risk assessment procedures should be used to identify need and ensure limited resources are directed appropriately. Many children and families can be supported within the community drawing on their own social networks.
Spirituality in palliative care: what language do we need?
Authors: Byrne Marjory
Published: May 2014

This article considers the language of spirituality in palliative care (Byrne, 2002; 2007), and focuses on the concepts of metaphor and story, demonstrated in practice by the art project and publication at The Prince & Princess of Wales Hospice (PPWH), Glasgow, UK.

Metaphors have been used in everyday speech and literature throughout history. The word ‘cancer’ is a metaphor itself traced back to Hippocrates in the 5th century BC. Stanworth (2004) concluded that metaphor can draw attention to aspects of the patient’s experience that might otherwise be overlooked. In palliative care the metaphor of the journey is often used to describe the experience of illness. Cicely Saunders (2000) described it as a spiritual journey, demonstrating opportunities for growth and development, hope and discovery. As professionals we share that journey. Stories often include metaphoric images and give an understanding of the uniqueness of individual fear and inner need. Cullen and Alcock describe creative expression as the process of unraveling a story (2007). The creative arts project at PPWH bears witness to this.
Lay caregivers’ perspectives on injecting subcutaneous medications at home
Authors: Israel Fiona , Reymond Liz , Slade Georgi , Menadue Sharyn , Charles Margaret A
Published: May 2014

Background: Most palliative care patients prefer to be cared for at home. While promoting quality of life for patients, this preference impacts on their caregivers. Lay caregivers in Australia can be required to deliver and adjust complex medication regimens. This study aimed to investigate caregivers’ perceptions concerning the injection of subcutaneous medications.

Methods: Fourteen caregivers were interviewed on two occasions, once during the caregiving phase and two months after bereavement.

Results: In the first interview, caregivers expressed anxieties associated with their ability to undertake the task of administering injections, including fears of overdosing their family member. In the bereavement interview caregivers reflected they were pleased they had contributed to the symptom relief of a family member and that although they would not necessarily volunteer to inject family members again, they were generally empowered by the experience. It is important for health professionals to support lay caregivers to successfully achieve their extended caregiving role.
Evaluation of a pilot study day for healthcare assistants and social care officers
Authors: Dryden Helen , Addicott Rachael
Published: May 2014

This report evaluates a pilot study day, which provided an introduction for healthcare assistants and social care officers into the causes, incidence and impact of symptoms encountered when providing palliative care for people with advanced disease. Aim: To demonstrate whether the study day facilitated an increase in confidence and knowledge in key areas of symptom control, the degree of satisfaction with the study day and whether participants were able to use information from the study day in practice. Method: Both qualitative and quantitative methods were employed in the evaluation process. Data were collected using satisfaction questionnaires, pre- and post-test questionnaires, and a telephone follow-up for self-selected participants. Results: There was a high degree of satisfaction with the study day. The results demonstrated statistically significant increases in both knowledge and confidence in helping to manage key symptoms encountered in palliative care patients. Conclusion: All participants reported that the aims of the day were met and agreed that the topics were relevant to practice.
Understanding the meaning of human dignity in Korea: a content analysis
Authors: Jo Kae-Hwa , Doorenbos Ardith Z
Published: May 2014

This study aims to understand the meaning of human dignity among adults in Korea. A qualitative study design is utilized. Data were collected with non-structured questions in a sample of 74 Korean adults and analyzed with qualitative content analysis. There were 4 categories, 31 themes and 106 theme clusters classified. The four categories that emerged were: fullness of dignity; loss of dignity; reinforcement of dignity; and enfeeblement of dignity. The results of this study may contribute to healthcare professionals’ understanding of Korean adults’ human dignity.
A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services
Authors: Arber Anne , Faithfull Sara , Plaskota Marek , Lucas Caroline , de Vries Kay
Published: May 2014

Aim: To investigate the symptom experience, access to supportive care services and rehabilitation of patients with a primary malignant brain tumour (PMBT) and their carers. Methods: A case review of 70 patients with a diagnosis of PMBT who received palliative care in five specialist palliative care units between July 2005 and June 2006. The review examined patients’ symptom experience, care issues, access to rehabilitation and access to supportive care services. Results: The two most significant issues experienced by patients and identified in the case review were hemiparesis (17%) and cognitive problems (16%). There were a number of care problems concerning safety related to mobility and falls (9%). Symptoms related to fatigue and tiredness were reported infrequently. There was an absence of information relating to the needs of informal carers; however, 18% of carers accessed bereavement counselling services following the death of the person they cared for. Conclusion: The needs of carers were not found to be routinely documented within the case notes. For some patients, referral to specialist palliative care services occur late in the illness trajectory, which means that patients and carers may not be able to access the full range of supportive care services available. Initial assessment of patients should identify the range of support services that both carers and patients are offered; and the uptake and response to services should be documented throughout the illness trajectory.
The management of drooling in motor neurone disease
Authors: Dand Pauline , Sakel Mohamed
Published: May 2014

Drooling is a common and potentially distressing symptom in those with motor neurone disease. A coordinated multidisciplinary approach is required to optimally manage this symptom. Both pharmacological and non-pharmacological strategies are required, and when drugs are used, off-label prescribing in terms of indication or route of administration is common. Further research needs to explore ways of enhancing swallowing ability as well as ways of optimizing drug therapies.
Perceptions of the impact of health-care services provided to palliative care clients and their carers 274
Authors: Connell Tanya , Fernandez Ritin S , Griffiths Rhonda , Tran Duong , Agar Meera , Harlum Janeane , Langdon Rachel
Published: May 2014

A wide range of services are provided to palliative care clients to alleviate pain and improve their quality of life. The purpose of this study was to explore the perceptions of clients and their carers regarding palliative care services in New South Wales, Austalia. Ten patients and their carers (n=7) were randomly selected from a sample of palliative care clients and were informed of the study and interviewed. Interview data were coded independently by three researchers and thematic analysis was undertaken. The themes identified were similar for both clients and carers and included: access to services; service provision; impact on way of life; usefulness of services; and staffing. An additional theme identified by clients was the burden of caregiving on carers. Knowledge of perceptions and concerns of client and carers is important to consider when planning palliative care services.
Interprofessional collaboration in palliative nursing: what is the patient-family role?
Authors: McDonald Christine , McCallin Antoinette
Published: May 2014

Interprofessional collaboration occurs when health professionals from different disciplines work together to identify needs, solve problems, make joint decisions on how best to proceed, and evaluate outcomes collectively. Interprofessional collaboration supports patient-centred care and takes place through teamwork. Team interactions, wider organizational issues, and environmental structures, such as safety, quality, efficiency and effectiveness issues influence this model of care. These broader contextual influences affect practice where there are tensions between the ideals of interprofessional collaboration and the realities of practice. This is evident when the patient and family position in interprofessional collaboration is considered. This article will discuss factors that affect interprofessional collaboration in relation to patients and families in palliative care. First, a definition of interprofessional collaboration is given, followed by an outline of the need for interprofessional collaboration. A brief discussion of key issues that influence collaboration follows, and a review of the implications for practice is presented.
Evaluating the impact of education on knowledge and confidence in delivering psychosocial end-of-life care
Authors: Lansdell John , Lansdell Nicola
Published: May 2014

Psychosocial care has been identified as an area of high priority in the UK. At a local level, staff cited a lack of knowledge and understanding of the key features of psychosocial care, resulting in low confidence in delivering effective psychosocial care. The aim of this evaluation was to review the impact of education on the knowledge and confidence of hospice staff in delivering effective psychosocial care. Qualitative and quantitative data was collected in order to facilitate consideration of the impact of education. Nine participants from the multiprofessional team completed the training programme. Findings demonstrated an increase in confidence scores for all participants linked with an increased understanding of psychosocial care. Audio-taping and observation of an interaction were found to be valuable when applying theory, and participants reported a change in their practice. The results suggest that attendance on the 3-day programme has increased the health professionals' understanding of psychosocial care and their confidence in providing psychosocial care in the clinical setting.
What does respite care mean for palliative care service users and carers? Messages from a conceptual mapping
Authors: Wolkowski Anna , Carr Susan M , Clarke Charlotte L
Published: May 2014

Over the coming years, as an ageing population with multiple chronic illnesses increases, the number of carers and paid carers is set to decrease. There is, therefore, an urgent need to understand what types of services are most supportive in helping to sustain caring relationships. Respite care is frequently mentioned as a key factor in supporting family carers and improving their quality of life but there is a lack of research to support its efficacy. This paper will present a conceptual map of respite care in order to promote a greater understanding of the multiple tensions that the palliative care respite literature reveals. As learning more about carer's needs and the complexities of the caring relationship develops, it is an appropriate time to map the key messages from the literature to help us understand what respite care does actually mean to palliative care service users and carers.
Nurses' views of the coping and support mechanisms experienced in managing terminal haemorrhage
Authors: Harris Dylan G , Flowers Sarah , Noble Simon IR
Published: May 2014

Introduction:

Although palliative care is a rewarding specialty, it presents emotive personal challenges for the health professionals working within it. Terminal haemorrhage is arguably the most feared and distressing event in the palliative care setting, both for the patient and for the health professionals looking after them. The aim of this study was to explore and refect on the coping and support mechanisms that have helped nurses to manage these events.

Method:

Purposive sampling was used to recruit nurses from palliative care and oncology who had personal experience of managing terminal haemorrhage. Semi-structured interviews were used to collect qualitative data that were then analysed using interpretative phenomenological analysis. Saturation of data was reached after 11 participants had been interviewed.

Results:

The participants had a combined experience of managing 37 patients with a terminal haemorrhage. The key themes that emerged were the role of the ‘autopilot’, having a plan, education and training, the value of debriefing and peer support, and the importance of supporting the whole team. Education and training specifically about terminal haemorrhage and structured debriefing after such events were both identified by the participants as currently unmet needs.

Conclusion:

Professionals working in areas in which patients are at particular risk of terminal haemorrhage require adequate training and education prior to these events and a structure for formal debriefing and peer support afterwards.
Preferences for end of life: views of hospice patients, family carers, and community nurse specialists
Authors: Holdsworth Laura , King Annette
Published: May 2014

An exploratory qualitative study was undertaken with the aim of identifying issues around discussing and recording preferences on place of death from the perspective of hospice patients, carers, and hospice community nurses. A purposive sample was selected from three hospices in the south east of England of six community nurse specialists (CNSs), five patients, five carers, and five bereaved carers. The patients and carers said it was important to them to discuss their preferences, but they acknowledged that discussing dying was difficult. The CNSs stated that there were several barriers that inhibited end-of-life discussions and that discussing preferences was not always a primary goal of care planning. It was felt among the service users, particularly the bereaved carers, that having more knowledge about what to expect of the dying process, knowing their relative's wishes, and understanding the role of hospice and palliative care could improve the experience of events leading up to death.
UK Telehealth Initiatives in Palliative Care: a Review
Authors: Johnston Bridget
Published: May 2014

This review paper explores the use of telehealth in relation to palliative care in the UK. Information technology (IT) developments are being harnessed throughout society, and there is growing interest in the ways in which they can be used to meet and support patients’ health needs in the community. The aim of the literature review was to scope the information available from published and unpublished research, with particular reference to older people. The evidence suggests that, despite the challenges, there are numerous examples of good practice in relation to telehealth, palliative and end-of-life care, and older people. Developments in technology that have increased the capacity to improve care, through reaching greater numbers of people of all age groups, mean that telehealth has much to offer people living with and dying from advanced illness. However, some of the evaluative evidence is limited and further rigour is needed when evaluating future telehealth innovations.
Nursing interventions to promote dignified dying in South Korea
Authors: Jo Kae-Hwa , Sung Ki-Wol , Doorenbos Ardith Z , Hong Elizabeth , Rue Tessa , Coenen Amy
Published: May 2014

Purpose: This descriptive study aimed to assess the appropriateness of the International Classification for Nursing Practice (ICNP) catalogue Palliative Care for Dignified Dying for palliative care nursing interventions in South Korea. Methods: The study surveyed 213 South Korean nurses who might regularly care for dying patients. Nurses were recruited to complete a survey that included interventions from the ICNP catalogue listed with Likert response sets. Findings: All of the interventions were scored as being at least ‘slightly important’ on average. The following three nursing interventions were ranked as most important when caring for dying patients: establish trust, establish rapport, and administer pain medication. Conclusions: The study provides new insights into the palliative care provided in South Korea by documenting nurses’ views of what are the most important palliative care nursing interventions. It also suggests that the palliative care interventions listed in the ICNP catalogue Palliative Care for Dignified Dying are in congruence with the interventions that nurses in South Korea use.
Challenges in home-based palliative care in Norway: a qualitative study of spouses' experiences
Authors: Hunstad Ingunn , Svindseth Marit Foelsvik
Published: May 2014

Introduction: Issues around patients’ preferred place of care and death are taking greater precedence of late. However, little is known about patients’ and carers’ experiences of palliative care in the home setting. This study explored carers’ views of what determines the quality of home care at the end of life. Methods: The study made use of systems theory, the purpose of which is to obtain a broad understanding of a phenomenon by looking at the relations between its individual elements. Seven carers (spouses) of people who died having received home-based palliative care in three different municipalities in Norway were interviewed. Results: None of the participants had planned to give or receive palliative care in the home. However, they did not regret that the home had been the place of care. Factors deemed important to acheiving the best possible home-based palliative care included around-the-clock help, holistic care, and affirmation of the significance of the carer's role. Conclusion: Health professionals should be more forthcoming in discussing the benefits and challenges of home-based palliative care and make greater acknowledgment of the carer's role. Treatment plans may be helpful in acheiving these goals.
The lived experience of patients receiving radiotherapy for head and neck cancer: a literature review
Authors: Donovan Monica , Glackin Marie
Published: May 2014

It is estimated that 60% of patients diagnosed with head and neck cancer will receive radiotherapy at some stage in their disease trajectory. The aim of this literature review was to find and analyse papers pertaining to the lived experiences of patients with head and neck cancer receiving radiotherapy. The review identified a limited number of high-quality research papers focusing on this topic, with only 10 papers fitting the inclusion/exclusion criteria. The majority of the investigative studies were not generalisable owing to small sample sizes and many of them being conducted in only one centre. However, the findings do highlight and contribute to the understanding of the lived experiences of this patient group and provide some insight into the unique physical, social, and psychological difficulties they encounter as a result of their treatment. There appears to be a need for further high-level research into these patients, particularly focusing on the provision of support and information prior to, during, and following radiotherapy. Further attention needs to be paid to preparing patients for the slow recovery following radiotherapy. Interventional studies are also required to develop clinical guidelines and protocols that can assist health professionals in meeting the holistic needs of this patient group.
Providing nutritional support for patients with cancer cachexia
Authors: McCreery Elizabeth , Costello John
Published: May 2014

Malnutrition is the single most common secondary diagnosis for patients with advanced cancer, and can affect up to 85% of patients. Anorexia and weight loss affect up to 80% of patients and are responsible for death in up to 20% of cases. Cancer cachexia is a feature of advanced cancer characterised by anorexia and a progressive loss of body weight, reduced immune response, poor treatment response, and poor quality of life. Providing effective nutritional support for patients who experience cancer cachexia at the end of life is very challenging and requires a multidisciplinary team approach to consider the implications beyond the patient’s dietary needs being met. Evidence suggests that health professionals have limited understanding of cachexia and are often at a loss as to how to manage patients who experience this severe form of weight loss. The purpose of this article is to examine the quality of life of patients with advanced cancer who experience cachexia. The article covers the aetiology and management of the condition as well as current treatment methods and management strategies. In particular, it emphasises the advantages of the Macmillan approach to weight and eating. This approach focuses on the social aspects of eating and weight gain, indicating the importance of considering the effects of malnutrition on both the patient and the carer.