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Aims: To explore the characteristics and views of the family carers of older people with heart failure.Method: 213 family carers of heart failure patients >60 years were recruited from UK general practitioner (GP) practices. Carer strain, quality of life (QOL) and service satisfaction questionnaires were completed every 3 months for 2 years, as well as 16 interviews with patients and carers, and 9 focus groups with health care professionals.Results: 76% of carers were female, 70% were >60 years and 73% were spousal carers. Predictors of carer strain were symptoms of depression, age and patient NYHA. Predictors of lower QOL were: spousal carer; 2+ health conditions and symptoms of depression. Qualitative findings related to the change in circumstances, impact of responsibilities and health conditions of the family carers.Conclusion: Carers were mainly older women, often experiencing multiple health conditions. Addressing the practical and emotional support required presents a challenge for specialist palliative care in responding to calls for increased involvement in heart failure. A shared care model with liaison between specialist heart failure nurses, cardiologists, primary care teams and hospice services is advocated. [ABSTRACT FROM AUTHOR]

METHOD: In-depth organisational case studies of five English hospice bereavement services. ANALYSIS: Thematic analysis of qualitative interviews and focus groups and scrutiny of documentary material provided by the hospice bereavement services. FINDINGS: Despite the differences in philisophies and activities among the hospices a common pattern of support were apparent. All made contact with the bereaved relatives or main carers shortly after the patient's death, all provided information about practical and emotional aspects of bereavement and a mixture of social and therapeutic support. None of the hospices used formal 'risk assessment', but at all sites there were processes in place to identify people who might benefit from bereavement support. Pre-bereavement support and continuity between this and bereavement support were important aspects. CONCLUSIONS: The case studies allowed analysis of individual characteristics and comparison between services. The high response rates suggest that the questionnaires used were acceptable to bereaved people. A clear and explicit rationale for bereavement support activities is a pre-requisite for the development of a cohesive and integrated programme of support to help resolve difficult decisions about individual clients. Pre-bereavement support by hospice staff positively contributes to the person's experience of bereavement. Hospices should address the issue of providing the appropriate level of bereavement support. [ABSTRACT FROM AUTHOR]

Sensory environments may potentially provide an atmosphere of calm and refreshment. This small pilot study used a randomized controlled trial (RCT) design and semi-structured interviews to investigate the use of the Snoezelen multisensory environment in palliative day care. Its second aim was to explore the feasibility of the RCT design in advance of a possible larger trial. The study compared Snoezelen with a normal 'quiet room' setting. Following screening for anxiety, 26 patients were recruited and randomly assigned to the control or experimental group. Anxiety and depression were assessed using the Hospital Anxiety and Depression scale and quality of life assessed using the European Organisation for Research and Treatment of Cancer Core 30 questionnaire. A significant reduction in anxiety was seen with the experimental group (P=0.01) but no changes were observed in any of the quality-of-life subscales. However, the results should be viewed with caution, as there were some differences between the groups in two of the quality-of-life subscales. Data from semi-structured interviews suggested Snoezelen may promote relaxation. It is concluded that Snoezelen is feasible for use with this patient group and recommendations are made for further research. [ABSTRACT FROM AUTHOR]

Dementia is a progressive terminal disease. More than 95% of patients will require 24-hour care either in long-stay hospital wards or in nursing homes at the end of life. There are many issues in the care of patients with dementia that parallel palliative cancer care, but relatively few patients with dementia currently access palliative care. Following an initial audit that found that many patients dying with dementia had symptoms that were not palliated, multidisciplinary guidelines were developed jointly by medical and nursing staff working in psychiatry for older people, together with pharmacy and palliative care staff. Following the implementation of guidelines, there was a significant decrease in the prescribing of antibiotics in the last 2 weeks of life and patients were much more likely to be prescribed analgesia, including opiates. This small study suggests that when developed collaboratively, multidisciplinary guidelines can have a positive impact on palliative care for non-oncology patients. [ABSTRACT FROM AUTHOR]

Background: Community-based palliative out-of-hours services operate outside normal working hours. However, little is known about the provision and delivery of such care., Aim: The aim of this study was to describe types of provision and delivery of out-of-hours palliative care services provided by UK hospices., Methods: Survey questionnaires were emailed to 150 adult hospices in the UK. Quantitative data were analysed using SPSS and qualitative data subjected to thematic analysis., Findings: Responding hospices ( n =57) provided the following types of support: telephone advice 72% ( n =41); care at home 70% ( n =40); and rapid response 35% ( n =20). There were variations between services regarding referral mechanisms, availability and workforce, and integration with statutory services was limited., Conclusion: Variation in the type of provision and delivery of out-of-hours palliative care services alongside limited integration with statutory care have contributed to inequity of access to community-based palliative care, and potentially suboptimal patient and informal caregiver outcomes.

Background: A primary caregiver shares the illness experience of the patient and undertakes vital care work, alongside managing the patient's emotions, and is actively involved in care process without being paid. When faced with the palliative care patient's needs, caregivers are affected on multiple levels (physical, psychological and socio-economic), thereby experiencing a moderate or severe burden of care., Aim: To identify assessment instruments for the burden of care for family caregivers that are suitable to be used in clinical practice., Method: A narrative review was conducted using an electronic search in Pubmed, PsychINFO, CINAHL of articles published in English between 2009-2019, using the search terms: 'caregiver/family, caregiver/carer and burden and palliative care/hospice/end of life'. An assessment grid was developed to appraise the clinical use of identified instruments., Results: Of the 568 articles identified, 40 quantitative studies were selected using 31 instruments to measure the caregiver burden of cancer, noncancer and terminally ill patients. Most instruments 23 (74.11%) evaluate the psycho-emotional and, 22 (70.96%) the social domain, 12 instruments (38.7%) focused on the physical domain, three (9.67%) on the spiritual field and six instruments (19.35%) on economic aspects. For the multidimensional instruments, the assessment grid scored highest for the Burden Scale for Family Caregiver (BSFC)., Conclusion: The BSFC is the tool that seems to meet the most requirements, being potentially the most useful tool in clinical practice.

Background: Internationally, the demand for the provision of high-quality palliative care is increasing exponentially. Japan is a rapidly ageing society and it is therefore important to understand the current context to develop practice and inform future resource allocation in long-term care facilities (LTCFs)., Aim: To describe the broad context of palliative care services, practice, education and policies in LTCFs in Japan., Methods: A process of expert elicitation and documentary review undertaken. The WHO palliative care model for public health was used as an analytical framework., Findings: Several deficits were identified regarding palliative care in Japanese LTCFs: a lack of palliative care strategy and standardised training for staff, and limited information on the use of palliative care medicines, quality improvement tools and frameworks., Conclusion: Such deficits need to be addressed to inform current nursing practice, future training needs for staff, quality care initiatives and decision making for advance care planning and resource allocation to respond to the ever-increasing demand for palliative care in these settings.

The changes within children's palliative care services in the UK over the last decade highlight the importance of respite provision. This article reports on an evaluation of a children's hospice in northern England that was undertaken to elicit the views of 24 service users on their experiences of respite care in the hospice: parents, children and young people, siblings, guardians and family carers. Data were collected using in-depth interviews, transcribed and submitted to framework analysis. The findings demonstrate the tensions that parents in need of respite care feel as a result of the power unconsciously exercised by staff. Redistribution of resources and reordering of priorities are recommended to prevent the inadvertent impact upon families.

Method: In-depth organisational case studies of five English hospices., Analysis: Thematic analysis of qualitative interviews and focus groups and scrutiny of documentary material provided by the hospice bereavement services., Findings: All of the hospices ran events where bereaved people met with other bereaved people who had been in contact with the hospice. They all offered some form of more intensive one-to-one support, spiritual support, and ran remembrance events. Three types of one-to-one support were offered: counselling; befriending; support from paid bereavement staff. Ongoing telephone support from trained bereavement volunteers appeared to be an acceptable and cost-effective way of providing low intensity bereavement support. Running social bereavement support groups is difficult and resource intensive. "Drop-in" events appear to perform a useful role for both bereaved people and bereavement services. There seemed to be no readily available sources of support for people with particularly complex bereavement problems., Conclusions: All of the hospices were offering appropriate types of bereavement support that clearly met Components 1 and 2 of bereavement support in the NICE guidance. In the absence of any agreement about "best practice" for adult bereavement support services it is the integration of bereavement support as a central aspect of hospice activity that is most likely to improve bereavement support for adults in the future.

Method: in-depth organisational case studies of five English hospice bereavement services., Analysis: thematic analysis of qualitative interviews and focus groups and scrutiny of documentary material provided by the hospice bereavement services., Findings: despite the differences in philosophies and activities among the hospices a common pattern of support were apparent. All made contact with the bereaved relatives or main carers shortly after the patient's death, all provided information about practical and emotional aspects of bereavement and a mixture of social and therapeutic support. None of the hospices used formal "risk assessment", but at all sites there were processes in place to identify people who might benefit from bereavement support. Pre-bereavement support and continuity between this and bereavement support were important aspects., Conclusions: the case studies allowed analysis of individual characteristics and comparison between services. The high response rates suggest that the questionnaires used were acceptable to bereaved people. A clear and explicit rationale for bereavement support activities is a pre-requisite for the development of a cohesive and integrated programme of support to help resolve difficult decisions about individual clients. Pre-bereavement support by hospice staff positively contributes to the person's experience of bereavement. Hospices should address the issue of providing the appropriate level of bereavement support.

Aims: To evaluate the effects of a palliative care education programme on the self-reported knowledge and confidence of 72 community nurses., Design: a prospective longitudinal postal questionnaire survey was conducted., Findings: seventy-one (99%) completed a pre-course questionnaire, 52 (72%) a questionnaire at completion of the course, and 37 (51%) a questionnaire one year later. Following the programme, more nurses felt that their professional needs were being met well or very well. Confidence in practice showed an increasing trend over time. Desire for education was lower on course completion than at its start. Palliative Care Nursing Quiz scores rose from a pre-course median of 12.5 to 15 at course completion (P=0.001) which was maintained 1 year later., Conclusion: the education programme was successful in raising standards of knowledge, professional development and confidence. Improvement was maintained one year later.

Background: The new General Medical Services contract in England means many GPs have transferred out-of hours work to their primary care organization, with implications for continuity of palliative care in community hospitals., Aim: To examine existing arrangements for out-of-hours medical cover in community hospitals, focusing on palliative care., Methods: Telephone survey of community hospital managers/senior nurses across England and Wales., Results: Interviews (n = 62) revealed nursing staff were satisfied with existing out-of-hours care. Concern was expressed about the future of out-of-hours medical care from GPs as new services will cover larger areas, meaning unknown doctors may attend, taking longer to arrive., Conclusion: Arrangements for out-of-hours medical cover in community hospitals are in transition, threatening the continuity of care for dying patients.

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

Method: Postal survey of UK hospices and specialist palliative care services providing adult bereavement support., Analysis: Descriptive statistics and content analysis of free text replies., Results: Three hundred services were identified, with 248 valid responses (83%). Of these, 198 (80%) were in England and 180 (73%) were associated with inpatient units. Most had been in existence for at least 10 years. Paid staff were used by 219 services (88%) and volunteers were involved in 168 services (68%). A small minority did not provide supervision for their bereavement staff. A quarter of services had insufficient staff. The most common activities were individual support, telephone support, written information, memorialization events and group support. Ninety-five services (43%) formally assessed the need for individual support. One hundred and fourteen services (51%) had no formal mechanisms for bereaved people to provide feedback about such support. Formal audit and evaluation of bereavement services was uncommon., Conclusions: The main elements of bereavement support can be identified but their combination varies. Assessment of people for individual support varies and the small size of many services may inhibit the effective delivery of support. Audit and evaluation of bereavement support may need to be developed.