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Background and aims: Globally, two thirds of people with dementia are cared for by their families or friends. Family caregivers' coping strategies of managing the caregiving burden of dementia have been studied widely in western literature. However, few attempts have been made to explore the experience of family caregivers' coping strategies in China. The aim of this study was to explore the family caregivers' coping strategies when caring for people with dementia in one city in the province of Shandong, China. Methods: Fourteen family caregivers were individually interviewed, and interpretative phenomenological analysis was used to identify themes within different family members. Results: Four key themes were found: (a) being filial; (b) changing self and self-care; (c) seeking help; and (d) having hope and continuing life. Conclusion: The study illustrates the different strategies developed by family members in order to cope with their new roles when caring for a relative who has dementia. It shows that cultural belief of filial piety plays a large role across these various coping strategies. It highlights how responsibility has been maintained and influenced by the specific sociocultural context. The results provide a useful foundation for developing interventions that support family caregivers cope with the burden of caring in this population. [ABSTRACT FROM AUTHOR]

Background: The number of older people dying in long-term care facilities is increasing; however, care at the end of life can be suboptimal. Interventions to improve palliative care delivery within these settings have been shown to be effective in improving care, but little is known about their implementation. Aim: The aim of this study was to describe the nature of implementation strategies and to identify facilitators and/or barriers to implementing palliative care interventions in long-term care facilities. Design: Scoping review with a thematic synthesis, following the ENTREQ guidelines. Data sources: Published literature was identified from electronic databases, including MEDLINE, EMBASE, PsycINFO and CINAHL. Controlled, non-controlled and qualitative studies and evaluations of interventions to improve palliative care in long-term care facilities were included. Studies that met the inclusion criteria were sourced and data extracted on the study characteristics, the implementation of the intervention, and facilitators and/or barriers to implementation. Results: The review identified 8902 abstracts, from which 61 studies were included in the review. A matrix of implementation was developed with four implementation strategies (facilitation, education/training, internal engagement and external engagement) and three implementation stages (conditions to introduce the intervention, embedding the intervention within day-to-day practice and sustaining ongoing change). Conclusion: Incorporating an implementation strategy into the development and delivery of an intervention is integral in embedding change in practice. The review has shown that the four implementation strategies identified varied considerably across interventions; however, similar facilitators and barriers were encountered across the studies identified. Further research is needed to understand the extent to which different implementation strategies can facilitate the uptake of palliative care interventions in long-term care facilities. [ABSTRACT FROM AUTHOR]

Background: Over a fifth of the population of developed countries die in care homes. While studies are emerging on the outcomes of care in the last few weeks of life, few report on the experience as perceived by the family members. Methods: As part of a wider study to improve the delivery of end-of-life care, bereaved relatives of residents who had died in a care home/hospital were sent the Family Perception of Care Scale questionnaire to evaluate their experience of care provision for their relative in the last month of life. The Family Perception of Care Scale questionnaire was posted to bereaved relatives, from 37 nursing care homes in south-east England, 3-6 months following the resident's death. The questionnaires were posted over a 14-month period from 1 October 2009 to 31 November 2010. Results: A total of 869 questionnaires were posted, with a 42% response rate. A global question within the Family Perception of Care Scale looking at the overall satisfaction with the quality of end-of-life care (Q24) indicated that bereaved relatives were satisfied with the care provided. Qualitative responses from family members highlighted some excellent care, although issues in relation to medical input, professional teamwork, last days of life and spiritual care remain problematic. Results provide an important insight into care provision at the end of life within these care homes. Conclusion: While some issues can be addressed through education, relationships and valuebased issues are likely to be more difficult to address in light of increasing pressure of healthcare support for UK care homes. [ABSTRACT FROM AUTHOR]

The article presents information on the effect of using high facilitation while implementing the Gold Standards Framework in Care Homes programme in Great Britain. It was hypothesised that implementing the programme will help in reducing hospital deaths for residents. It is concluded that without national guidelines, facilitation of the programme will vary and its implementation.

Background: Action research is beginning to be utilized within palliative care research to address questions concerned with practice and organizational change. An understanding of appropriate evaluation practices is required in order to ensure that high-quality action research is conducted.Aim: The aim of this paper is to present an account of participatory action research and illustrate the way in which evaluation approaches are integrated within this methodology.Design: Participatory action research will be described identifying its origins, principles and its relationship with evaluation frameworks. The key features of the evaluation process in regard to participatory research are outlined.Setting: Two studies are presented which illustrate the integration of evaluation within a participatory action research framework. The first approach uses a before–after summative evaluation approach in a study undertaken to develop palliative care practice within a UK nursing home context. The evaluation focused upon the impact of the intervention. The second study utilized similar methods and addressed the process of the action research using the Äldreväst Sjuhärad (ÄVS) model to evaluate participation in a peer education programme for advance care planning amongst older adults.Results: These examples of evaluation within action research illustrate how diverse methods can be used. The use of a specific participatory evaluation model ensures the process reflects the underlying participatory principle of action research.Conclusions: Evaluation processes are integral to action research approaches. The specific evaluative methods adopted will reflect the nature and focus of the evaluation being undertaken. [ABSTRACT FROM PUBLISHER]

The objective of this study was to evaluate the key components of services for people with advanced heart failure from multiple perspectives and recommend how care might be delivered in line with UK policies on long-term conditions, palliative and end-of-life care. Serial interviews were conducted over 2 years with patients, case-linked family carers and professionals (n = 162); followed by four focus groups involving patients, carers and key professionals (n = 32). There were 36 patients with advanced heart failure, 30 family carers and 62 professionals included in the study from a UK health region with various heart failure care models. Participants confirmed the value of a key health professional coordinating care, holistic assessment and regular monitoring. A lack of time and resources due to competing priorities in primary care, failure to respond to the fluctuations of a heart failure illness trajectory, concerns about the balance between direct care from specialist nurses or a more advisory role and difficulty in judging when to move towards palliative care hindered consistent access to proactive care. A heart failure care framework, with key stages and service responses, was developed. We conclude that patients with long-term conditions needing palliative care should be identified and managed using pragmatic criteria that include a proactive shift in care goals. [ABSTRACT FROM AUTHOR]

Action research in health care is a relatively new research approach, which is adopted when one aim of the research is to bring about change in practice and to research the process of that change. This paper describes the way action research, as a research methodology, can be used to develop palliative care knowledge in generalist care settings. An overview of action research is presented and its relationship to more conventional research paradigms. Two action research projects, undertaken to develop knowledge about end-of-life care for older people in care homes, are used to illustrate the key principles of action research, methods of data collection and data analysis. Finally, the challenges of such, utilising an action research approach and its strengths, are discussed. [ABSTRACT FROM AUTHOR]

The purpose of this study was to promote quality end-of-life care in eight independent nursing homes using an ‘integrated care pathway (ICP) for the last days of life’ document. Action research methodology underpinned the design of this study in order to promote collaboration between staff in the nursing homes and the research team, empower staff in the practice of quality end-of-life care, and promote sustainable development of end-of-life care once the study finished. Considerable barriers within the nursing home context highlighted initial difficulties. This is reported elsewhere (Watson et al., in press) (Bridges Initiative, 2004). However, key champions appointed in each nursing home and their subsequent support was a major part of facilitating the ICP implementation. This paper reports the qualitative analysis from the summative evaluation of the study. One overarching pattern of ‘dying being more central to care in the nursing homes’ emerged as a result of the study; five themes that contributed to this shift were: greater ‘openness’ around death and dying; recognising dying and taking responsibility; better ‘teamwork’; critically using palliative care knowledge to influence practice; more meaningful communication. [ABSTRACT FROM PUBLISHER]

Hope is defined as a concept that suggests a greater emotional component than mere expectation, and is seen as an active process of conscious and unconscious reasoning. Hope is intrinsically linked with caring, and the professional role of the nurse can often influence the generation of hope or hopelessness in the care of patients. The appropriateness of removing all hope even within palliative care is questioned. A case study is presented in which a patient, requesting euthanasia, hovered on the brink of death yet would not die. For this patient all 'hope' of wanting to live had waned, yet she could not die. A new concept of 'rational no-hope' is postulated. [ABSTRACT FROM PUBLISHER]

Editorial. Presents the author's opinions about palliative care, as a specialty, and its roots in the evolution of the hospice movement. The need for courses to help people acquire greater skills in the care of dying patients and their families; The application of the terms 'specialist' and 'specialization' to palliative care; Questioning of the term 'specialist' as it applies to palliative care.