bluuebunny/crossref_metadata_2025_split huggingface dataset:
Evaluation of the Bereavement Risk Index (BRI): a community hospice care protocol
Authors: Kristjanson Linda J , Cousins Kerry , Smith Joanna , Lewin Gill 
Published: May 2014

Aim To test the validity, reliability and feasibility of using a modified version of Parkes’ (1993) Bereavement Risk Index (BRI) and bereavement support protocol in an Australian home hospice care setting. In addition, the study aimed to explore what types of family members are most likely to experience a more difficult grief reaction. Design A prospective, descriptive study was used. One hundred and fifty bereaved family members participated. Bereaved family members were classified as high, medium or low risk and received a structured bereavement support protocol based on their level of risk as measured by the BRI. Findings Results indicated that a shorter 4-item version of the BRI was more internally consistent than the longer version and demonstrated good predictive validity when correlated with outcome measures at 3 months following the patient’s death. Conclusion The modified 4-item BRI demonstrated acceptable reliability and validity and was brief and simple to use. Nurses were able to use the instrument with minimal training and were able to adhere to a matched bereavement support protocol.
Towards a culturally acceptable end-of-life survey questionnaire: a Bengali translation of VOICES
Authors: Hughes Rhidian , Saleem Tariq , Addington-Hall Julia 
Published: May 2014

Aim To assess the cultural acceptability and appropriateness of an English end-of-life survey questionnaire translated into Bengali for use in east London. Study design Group discussions with informal carers (n=3 groups) and professionals (n=1 group). Sample and setting Informal carers within a Bengali-speaking community (n=26) in east London participated in three groups discussions led by three community workers trained in interviewing procedures. These data were followed up with one group discussion with bilingual health and social care professionals (n=6). Analysis Data subject to content analysis. Results Participants were supportive of the development of the translated questionnaire. However, attention should be paid to vocabulary, shared meanings, cultural equivalence and the ways people conceptualize health and illness, and death and dying. Conclusions These findings, together with participants’ views on the administration of the questionnaire, will prompt revisions to the research approach when targeting ethnic and cultural groups in the future.
Palliative care in Irish nursing homes: the work of community clinical nurse specialists
Authors: Ling Julie 
Published: May 2014

Aim To assess the current level of input from community-based clinical nurse specialists in palliative care into nursing homes in the Republic of Ireland. Method A national survey was undertaken with questionnaires distributed via the National Council for the Professional Development of Nursing and Midwifery database. The total population was 114 community-based clinical nurse specialists in palliative care. Findings Sixty-three completed questionnaires were returned achieving a 55% response rate. All respondents had undertaken work with nursing homes. The main focus of interactions with nursing homes was on pain and symptom management and this was often provided by telephone. The majority of nurses were involved exclusively in care of patients with cancer, although 40% of respondents cared for patients with non-malignant diseases. Conclusions As populations age and more people end their lives in residential care settings, this area of care has increasing relevance. The dissemination of palliative care best practice would ensure that all patients, regardless of their diagnosis, receive the benefits of palliative care at the end of life. Clinical nurse specialists are ideally placed to provide education and support to nursing homes and other residential care settings for older people.
End-of-life care: an educational intervention for rural nurses in southeastern USA
Authors: Easom Leisa R , Galatas Steven , Warda Maria 
Published: May 2014

Aim: To assess the impact of three educational presentations as an intervention for increasing knowledge of end-of-life care for rural nurses in assisted living and nursing home environments. Design: A repeated measures design (quantitative component) evaluated the effects of the educational intervention. Two open ended questions yielded qualitative data. Sample and Setting: A convenience sample (n = 9) of Registered Nurses and Licensed Practical Nurses employed in an assisted living facility or nursing home in the rural, southeastern region of the USA. Level of nursing experience ranged from 6 to 28 years. Analysis: Frequency distributions, difference of means test for paired samples. Results: Post test scores were significantly higher (t = 6.999; p < 0.001) than pretest scores regarding overall knowledge on end-of-life care. Attitudes and perceptions of participants changed in defining what constitutes a ‘good death’. Conclusions: Classroom educational presentations are an effective means of changing attitudes and improving end-of-life care knowledge. Additional education and support for rural nursing personnel involved with residents of long term care may enhance end-of-life care.
Canada’s Compassionate Care Benefit: Views of family caregivers in chronic illness
Authors: Williams Allison , Crooks Valorie A , Stajduhar Kelli I , Allan Diane , Cohen S Robin 
Published: May 2014

Aim: Based on a pilot evaluation of Canada’s recently introduced Compassionate Care Benefit (CCB), the purpose of this paper is to highlight the experiences of family caregivers caring for people with non-malignant advanced chronic illness. Design: Using Patton’s (1997) utilization-focused evaluation approach, 25 telephone interviews were conducted with three groups of family caregivers: Those who had successfully applied for the CCB; Those who were unsuccessful in their applications Those who had never applied for the benefit. Findings: The CCB has a number of limitations, particularly for caregivers of patients diagnosed with non-malignant advanced chronic illness. The central limitations are: Difficulties associated with accurate prognostication Limited definition of ‘family member’ Unsufficient length of the funding period. Conclusion: By modelling similar programmes internationally, such as those in Sweden, Norway, and the Netherlands, Canada would likely find the CCB to have greater relevance and accessibility to Canadian caregivers, particularly those caring for people with non-malignant advanced chronic illness.
Children’s needs when facing the death of a parent from cancer: part one
Authors: MacPherson Catriona , Emeleus Martha 
Published: May 2014

A small exploratory study was conducted to identify the psychosocial needs of children facing the death and subsequent bereavement of a parent from cancer. The focus was on the palliative phase of care through the bereavement period with the aim of identifying the best way forward in further developing a community-based service for children in Fife. This paper selectively reviews the literature related to children’s and families’ needs when facing and dealing with the death of a parent, bringing into focus some of the work available to inform thinking and planning in this area. It then describes the methods used to conduct this exploratory study and reports the issues which will be considered as a basis for future service development.
Use of a modified ESAS in cancer patients: a pilot study of patient and staff experiences
Authors: Baba Kerstin , Fransson Per , Lindh Jack 
Published: May 2014

Aim: To evaluate the feasibility of a modified Edmonton Symptom Assessment Scale (ESAS) for monitoring symptoms in oncological palliative care. Methods: A modified ESAS was delivered daily to 28 patients with advanced cancer. A questionnaire to discover staff members’ opinions on the ESAS was delivered at the end of the study. Structured interviews were used to examine patients’ opinions on the ESAS. Results: The mean total ESAS score was 28.9 on inclusion day and 25.8 on Day 3 (p=0.531). Eleven of 21 of the staff considered the ESAS to be a ‘good’ or ‘very good’ way to obtain information about patients’ symptoms. Seventeen of 24 patients who participated in the interview felt that ESAS was easy to fill in, and that there were no missing questions. Conclusion: The patients felt that the modified ESAS contained relevant symptoms, and that the questionnaires were easy to fill in. The staff considered the modified ESAS to be a useful instrument for obtaining information about patients’ symptom distress. The modified ESAS is a good instrument for use as part of the daily clinical routine, as well as for monitoring symptoms in palliative oncological care.
The evaluation of an end of life integrated care pathway
Authors: Lhussier Monique , Carr Susan M , Wilcockson Jane 
Published: May 2014

Aim: This evaluation set out to examine the needs of staff as they adopted an end-of-life Integrated Care Pathway (ICP), and its impact on both service users and providers. Method: Semi-structured interviews were conducted with palliative care specialists, other health care professionals and bereaved carers. Results: The challenges encountered revolved around the multitude of settings, and professionals involved; around the diagnosing of dying; communication with patients and the provision of emotional or spiritual support. Ongoing challenges at the end of the evaluation were those of addressing spirituality and some of the established practices. However, there was general consensus that the ICP facilitated greater consistency of care, improved continuity, and ensured a proactive rather than a reactive approach to care. All these were recognised and appreciated by bereaved carers. Conclusion: End of life is now every health care professional’s business and this may have the potential to raise the place of palliative care in general on the professional agenda.
Palliative care provision in Huntingtons disease
Authors: Travers Elizabeth , Jones Kate , Nicol Jacqueline 
Published: May 2014

There is currently much interest regarding the needs of people affected by non-malignant disease and whether or not these are being met by palliative care services. The evidence available appears to support the conclusion that while there is a general inequality of access, some individuals with non-malignant conditions such as cardiac disease and motor neurone disease are able to access palliative care services more readily than others. Huntington’s disease (HD) is a devastating neurological condition of long duration and as such may have a lengthy palliative phase. Consequently, a diagnosis of HD will have a major impact on the quality of life of the affected individual and their family. For carers, an understanding of this challenging disease and its prognosis is essential for the provision of appropriate and effective care. This article reviews the links between HD and palliative care and discusses some of the challenges facing patients, families and health care professionals in adopting a palliative approach in the management of the disease.
Process mapping: enhancing the implementation of the Liverpool Care Pathway
Authors: Taylor Amanda J , Randall Clare 
Published: May 2014

Arohanui Hospice is a 12-bed specialist palliative care service based in Palmerston North, New Zealand. It serves a population of 180 000 people spread over a wide geographical area, both urban and rural. The Liverpool Care Pathway (LCP) was initially implemented at the hospice inpatient unit in January 2005. Following this, the ‘LCP Pilot Project’ was developed. This project involved the implementation of the LCP within three aged residential care facilities and two wards within the regional hospital. Included in the project was a research component to enable evaluation of the effectiveness of the LCP in each setting. This article will consider and demonstrate the use of process mapping (Buckman, 2003) as a quality improvement tool to enhance the effective implementation and sustained use of the LCP for the dying patient within aged residential care. Measures are considered that support the implementation of the LCP at an organisational level rather than at a purely clinical level. While this work has been completed within the New Zealand context, it is believed that the principles are transferable to similar settings internationally.
Malignant fungating wounds: an analysis of the lived experience
Authors: Piggin Catherine , Jones Vanessa 
Published: May 2014

Aim: This paper reports upon a study that aimed to illuminate the meaning and experience of living with a malignant fungating wound. Background: The current understanding of living with a malignant fungating wound is derived from professionals’ rather than the patient’s perspective. An appreciation of the lived experience may assist in the development of more empathetic support approaches. Method: A Heideggerian hermeneutic phenomenological approach was used as the philosophical framework. Unstructured interviews were conducted with a purposive sample of five participants. Content hermeneutic analysis was adopted to analyse the data. Findings: Four themes were identified: representing the worst part of the patient’s cancer; living within a body that cannot be trusted; a changing relationship with the patient’s family and friends; and a loss of identity while continuously striving to be normal, yet feeling different. Conclusion: Health care professionals must possess a heightened awareness of: the importance of the impact of the wound upon day-to-day living, identity and purpose; the value of adopting the phrase used by the patient to describe their wound; and to focus more upon the subjective meaning of a visibly changing wound rather than objective measurement.
Macmillan nurse facilitators: establishing a palliative resource nurse network in primary care
Authors: Byron Shirley , Moriarty Deirdre , O’Hara Annette 
Published: May 2014

Aim: To describe how a link nurse system for palliative care was established in primary care and report on an evaluation of the system undertaken as part of a larger evaluation of newly established Macmillan nurse facilitator posts. Method: A range of data collection techniques were used to collect information relating to the link nurse system including interview, questionnaire and observation. Various sampling strategies were adopted for the different data collection methods. This paper reports on the findings of semi structured interviews with groups of district nurses and link nurses, a questionnaire to district nurses, telephone interviews with a sample of questionnaire respondents and site observations. Findings: The Macmillan nurse facilitators have established, supported and maintained a robust palliative resource nurse (PRN) group within primary care. The majority of practising clinical district nursing staff have used this important resource for a variety of reasons over the past four years. The model developed provides an opportunity for professional development for the PRNs. This initiative has been viewed as a very positive development and has been utilised for disseminating information, research and audit purposes from clinicians both within and out-with primary care. Conclusions: The establishment of a palliative resource network within primary care has been successful. It has provided an effective and efficient means of disseminating information across a large workforce and extensive geographical area. The development of a clear structured model benefits both the PRNs and the organisation by providing clear expectations of the role while offering a framework for professional development.
Pain in elderly hospitalized cancer patients with bone metastases in Norway
Authors: Hølen Jacob , Torvik Karin , Kaasa Stein , Kirkevold Øyvind , Holtan Anders , Kongsgaard Ulf , Rustøen Tone 
Published: May 2014

Aim: To examine differences in reported pain, pain management and satisfaction with pain management between middle-aged and elderly patients. The study also examined differences in global quality of life (QoL) and pain interference with patient function between middle-aged and elderly patients with bone metastases. Method: A one-day prevalence study was performed, targeting hospitalized cancer patients 18 years and over in Norwegian hospitals; 79 patients with bone metastases were included. Results: In total, 89% of patients reported daily pain, and there was no significant difference between the two age groups (p=0.52). Elderly patients reported significantly higher scores for ‘worst pain’ (p=0.036) and ‘pain severity intensity’ (p=0.027), but received strong opioids for their cancer pain significantly less often than middle-aged patients (p=0.024). We found a significant linear association between increasing age and decreasing scores on Cleeland’s pain management index (p=0.002). There were no statistically significant differences between age groups in satisfaction with pain management, pain interference with functioning or global QoL. Conclusion: These results indicate that more focus is needed on pain management in elderly cancer patients with bone metastases.
Palliative care nurse consultants in Melbourne: a snapshot of their clinical role
Authors: O’Connor Margaret , Peters Louise , Walsh Kaye 
Published: May 2014

Aim: The current role of the palliative care nurse consultant (PCNC) is as diverse as the organisations in which such nurses work. This study reports on Phase 2 of a larger study in Melbourne, Australia, which focused particularly on describing some of the clinical aspects of the work of the PCNC in the acute hospital setting. Design: A cross-sectional survey was used to describe the selected clinical activities of the PCNC. A data collection sheet was developed to gather information about their work. Sample and setting: 21 PCNCs participated in the study and data were collected for 282 patients within 12 acute hospitals in Melbourne. Methods: PCNCs recorded selected information about their clinical work for a two-week period. Descriptive analyses were carried out to calculate frequency distributions and mean scores. Findings: In 73% of referrals, the PCNC was the first contact the patient had with any palliative care health professional; patients with a malignant diagnosis constituted the main workload of the PCNC; the highest number of interventions was recorded for the symptom management/psychosocial care category; and the time from acute hospital admission to PCNC consult referral was 6.57 days. Conclusions: This study has demonstrated that the work of PCNCs is complex and diverse. This research forms the basis for further study into the role of the PCNC.
The conception of the Nankya model of palliative care development in Africa
Authors: Downing Julia 
Published: May 2014

There is a great need for palliative care in Uganda. The framework for the development of such services has been the World Health Organization’s (WHO) public health strategy for palliative care, including policy, drug availability, education and implementation. In this model and in much of the literature it is accepted that education has a part to play in the development of palliative care; yet, there is a lack of evaluative literature or an understanding as to the steps required alongside education to develop palliative care services. An evaluation was undertaken of an HIV/AIDS palliative care education strategy in rural Uganda. It aimed to determine the effectiveness of the education strategy and to explore what had taken place in order for any change in practice to be seen. The impact of the programme was seen in different areas and a grounded theory approach was used to look at the emerging themes from the evaluation. Throughout the process it was possible to identify key milestones and changes that had to occur within the district where the training was taking place, in order to help develop palliative care services. To achieve these milestones and make the changes it was necessary not only to provide palliative care training, but also to advocate for palliative care at the district and national levels and work with other stakeholders in the area. Out of this, a model for the development of palliative care in the rural African context has emerged called the ‘Nankya model of palliative care development’. Further work needs to be done on validating the model although it appears that the Nankya model is congruent with the WHO’s public health approach to palliative care and it is anticipated that it will help stakeholders to understand the process of developing palliative care in the rural setting.
Supporting cancer patients and their carers: the contribution of art therapy and clinical psychology
Authors: Jones Gudrun , Browning Mary 
Published: May 2014

The value of various types of psychosocial support for people with cancer is now becoming well established. Typically the term ‘psychosocial’ includes: counselling and psychotherapy, cognitive behaviour therapy, education and information, and social support. The research literature sometimes fails to clarify the exact nature of the different approaches and their relative efficacy. Inevitably, even within a specific type of therapeutic approach, there is variation owing to the professional background and skills of different practitioners. This article describes the relative contributions made by an art psychotherapist and a clinical psychologist working together in a cancer and palliative care service in Wales. The referrals come from the same sources and tend to be for similar types of problem. The assessment and formulation processes are also broadly similar. Interventions, however, are markedly different. These are described in some detail through case study examples.
Palliative care needs of chronically ill nursing home residents in Germany: focusing on living, not dying
Authors: Strohbuecker Barbara , Eisenmann Yvonne , Galushko Maren , Montag Thomas , Voltz Raymond 
Published: May 2014

Objectives: To explore the palliative care needs of nursing home residents in Germany who had not yet entered the dying phase. Methods: Semi-structured interviews were conducted with a sample of nine residents suffering from chronic disease or frailty. The interviews were audio-recorded, transcribed, and analysed using a grounded theory approach. Findings: The residents described multidimensional needs, which were categorized as ‘being recognized as a person’, ‘having a choice and being in control’, ‘being connected to family and the world outside’, ‘being spiritually connected’, and ‘physical comfort’. They emphasized their desire to control everyday matters. Physical impairment was a problem, especially when independence was threatened, e.g. by immobility or a reliance on pain killers. Conclusion: The desire for self-determination is key when designing and evaluating primary and palliative care programmes for nursing homes. Early integration of palliative care can improve the quality of life of chronically ill residents.