253 research outputs found

    COVID-19: A personal perspective

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    Palliative care research:state of play and journal direction

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    A poststructural rethinking of the ethics of technology in relation to the provision of palliative home care by district nurses

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    Technology and its interfaces with nursing care, patients and carers, and the home are many and varied. To date, healthcare services research has generally focussed on pragmatic issues such access to and the optimization of technology, while philosophical inquiry has tended to focus on the ethics of how technology makes the home more hospital like. However, the ethical implications of the ways in which technology shapes the subjectivities of patients and carers have not been explored. In order to explore this, poststructural theory, in particular the work of Butler, Foucault, and Deleuze, is used to theorize the relationship between subjectivity and materiality as ethically mandated on producing rather than precluding the development of subjectivities in novel ways. This theoretical understanding is then utilized through a process of ‘plugged in’ as described by Jackson and Massie that aims to link empirical data, research, and philosophical inquiry. Through this process, it is suggested that power, which the empirical data demonstrate, is frequently exercised through medical discourses and restricts patients' and carers' ability to shape the material environment of the home as a place to live and be cared for in palliative stages of illness. Alternative discourses are suggested both from the empirical data as well as other research, which may offer patients and carers the possibility of reclaiming power over the home and their subjectivities. Finally, the dichotomy between the home and hospital, mediated via technology, is posited as being problematic. It is argued the dichotomy is false and should be moved away from in order to allow an ethical embrace of technology in palliative car

    Quality care as ethical care:a poststructural analysis of palliative and supportive district nursing care

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    Quality of care is a prominent discourse in modern health-care and has previously been conceptualised in terms of ethics. In addition, the role of knowledge has been suggested as being particularly influential with regard to the nurse–patient–carer relationship. However, to date, no analyses have examined how knowledge (as an ethical concept) impinges on quality of care. Qualitative semi-structured interviews were conducted with 26 patients with palliative and supportive care needs receiving district nursing care and thirteen of their lay carers. Poststructural discourse analysis techniques were utilised to take an ethical perspective on the current way in which quality of care is assessed and produced in health-care. It is argued that if quality of care is to be achieved, patients and carers need to be able to redistribute and redevelop the knowledge of their services in a collaborative way that goes beyond the current ways of working. Theoretical works and extant research are then used to produce tentative suggestions about how this may be achieved

    The Namaste Care Guide

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    Aims, actions and advance care planning by district nurses providing palliative care:an ethnographic observational study

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    District nurses are core providers of palliative care, yet little is known about the way that they provide care to people at home. This study aimed to investigate the role and practice of the district nurse in palliative care provision. This was an ethnographic study, with non-participant observation of district nurse-palliative care patient encounters, and post-observation interviews. District nurse teams from three geographical areas in northwest England participated. Data were analysed iteratively, facilitated by the use of NVivo, using techniques of constant comparison. Some 17 encounters were observed, with 23 post-observation interviews (11 with district nurses, 12 with patients/carers). Core themes were ‘planning for the future’ and ‘caring in the moment’. District nurses described how they provided and planned future care, but observations showed that this care focused on physical symptom management. District nurses engaged in friendly relationship building, which allows detailed management of symptomatology, but with little evidence of advance care planning

    Perspectives on COVID-19 and palliative care research

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    Improving living and dying for people with advanced dementia living in care homes: a realist review of Namaste Care and other multisensory interventions

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    © The Author(s). 2018Background: Seventy percent of people with advanced dementia live and die in care homes. Multisensory approaches, such as Namaste Care, have been developed to improve the quality of life and dying for people with advanced dementia but little is known about effectiveness or optimum delivery. The aim of this review was to develop an explanatory account of how the Namaste Care intervention might work, on what outcomes, and in what circumstances. Methods: This is a realist review involving scoping of the literature and stakeholder interviews to develop theoretical explanations of how interventions might work, systematic searches of the evidence to test and develop the theories, and their validation with a purposive sample of stakeholders. Twenty stakeholders - user/patient representatives, dementia care providers, care home staff, researchers -took part in interviews and/or workshops. Results: We included 85 papers. Eight focused on Namaste Care and the remainder on other types of sensory interventions such as music therapy or massage. We identified three context-mechanism-outcome configurations which together provide an explanatory account of what needs to be in place for Namaste Care to work for people living with advanced dementia. This includes: providing structured access to social and physical stimulation, equipping care home staff to cope effectively with complex behaviours and variable responses, and providing a framework for person-centred care. A key overarching theme concerned the importance of activities that enabled the development of moments of connection for people with advanced dementia. Conclusions: This realist review provides a coherent account of how Namaste Care, and other multisensory interventions might work. It provides practitioners and researchers with a framework to judge the feasibility and likely success of Namaste Care in long term settings. Key for staff and residents is that the intervention triggers feelings of familiarity, reassurance, engagement and connection.Peer reviewe

    What are the views of hospital-based generalist palliative care professionals on what facilitates or hinders collaboration with in-patient specialist palliative care teams?:a systematically constructed narrative synthesis

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    Background: Hospital-based specialist palliative care services are common, yet existing evidence of inpatient generalist providers’ perceptions of collaborating with hospital-based specialist palliative care teams has never been systematically assessed. Aim: To assess the existing evidence of inpatient generalist palliative care providers’ perceptions of what facilitates or hinders collaboration with hospital-based specialist palliative care teams. Design: Narrative literature synthesis with systematically constructed search. Data sources: PsycINFO, PubMed, Web of Science, Cumulative Index of Nursing and Allied Health Literature and ProQuest Social Services databases were searched up to December 2014. Individual journal, citation and reference searching were also conducted. Papers with the views of generalist inpatient professional caregivers who utilised hospital-based specialist palliative care team services were included in the narrative synthesis. Hawker’s criteria were used to assess the quality of the included studies. Results: Studies included (n = 23) represented a variety of inpatient generalist palliative care professionals’ experiences of collaborating with specialist palliative care. Effective collaboration is experienced by many generalist professionals. Five themes were identified as improving or decreasing effective collaboration: model of care (integrated vs linear), professional onus, expertise and trust, skill building versus deskilling and specialist palliative care operations. Collaboration is fostered when specialist palliative care teams practice proactive communication, role negotiation and shared problem-solving and recognise generalists’ expertise. Conclusion: Fuller integration of specialist palliative care services, timely sharing of information and mutual respect increase generalists’ perceptions of effective collaboration. Further research is needed regarding the experiences of non-physician and non-nursing professionals as their views were either not included or not explicitly reported
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