Palliative medicine
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Palliative medicine · Mar 2023
What does 'good' palliative care look like for children and young people? A qualitative study of parents' experiences and perspectives.
Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is being done, in clinical practice. In 2017, the National Institute for Health and Care Excellence (NICE) introduced a quality standard, to standardise and improve children's palliative care in England. However, there is little evidence about what good experiences of palliative care for children are, and how they relate to the quality standard for end-of-life care. ⋯ Findings have implications for informing evidence based practice and clinical guidelines, overall improving experiences of care.
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Palliative medicine · Mar 2023
Updating international consensus on best practice in care of the dying: A Delphi study.
Good care of the dying has been defined as being able to die in the place of your choice, free from pain, cared for with dignity and supported by the best possible care. This definition underpinned the development of the '10/40 Model' of care for the dying, in 2013. The model includes 10 'Key Principles' that underpin 40 'Core Outcomes' of care. It was necessary to update consensus on the 10/40 Model to ensure that it remains clinically relevant and applicable for practice. ⋯ The updated 10/40 Model will guide the delivery of high-quality care for dying patients regardless of the location of care. Further work should focus on increasing lay participation and participation from low income and culturally diverse countries.
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Palliative medicine · Mar 2023
Translation and cross-cultural adaptation of the Integrated Palliative Care Outcome Scale in Hindi: Toward capturing palliative needs and concerns in Hindi speaking patients.
Culturally relevant patient-centered outcomes tools are needed to identify the needs of patients and to assess their palliative care concerns. ⋯ Hindi IPOS has face and content validity for use in clinical practice and research. The Hindi IPOS has implications beyond Indian palliative care settings. Millions of Hindi speakers can now respond to IPOS, and have a tool for communicating their palliative care needs in their mother tongue to inform patient-centered care.
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Palliative medicine · Mar 2023
Combining realist evaluation and transformative evaluation to advance research in palliative care: The case of end of life companionship.
Palliative care requires innovative methods to understand what works, for whom, in what circumstances and why. Realist evaluation has become one prominent approach due to its preoccupation with building, and testing, causal theories to explain the influence of contextual factors on outcomes. Undertaking realist evaluation is not without challenges and may amplify issues of underrepresentation, disempower those working in palliative care, and produce results with poor ecological validity. Complementary approaches are needed which mitigate these challenges, whilst producing credible findings that advances knowledge. ⋯ Contemporary issues in palliative care pertain to the complexity of palliative care, the insufficiency of experimental designs alone, and the challenges of achieving inclusive research participation. In this article it is argued that theory led, participatory, opportunistic and naturalistic approaches can provide an antidote to the issues in the literature. The combination also mitigates many methodological critiques of the individual approaches, by increasing the transformative potential of realist evaluation, and explanatory potential of transformative evaluation.