Palliative medicine
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Palliative medicine · Jul 2024
Observational StudyThe cost of providing care by family and friends (informal care) in the last year of life: A population observational study.
Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. ⋯ We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.
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Palliative medicine · Jul 2024
Views of patients with progressive illness and carers about the role of digital advance care planning systems to record and share information: A qualitative study.
Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. ⋯ Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems.
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Palliative medicine · Jul 2024
Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study.
Palliative care for people experiencing homelessness is a complex field. Due to the intricate nuances and heterogeneity in the experience of palliative care for people without secure housing, it is essential that research is informed by people with lived experience of homelessness. However, as homelessness is often associated with loss, trauma and high levels of exposure to death, any co-production of research, particularly in the field of palliative and end-of-life-care, must be trauma-informed. ⋯ Co-production of palliative care research with people with lived experience of homelessness is essential, but must be done carefully and sensitively. As a population with high levels of premature morbidity and mortality yet low access to palliative care, the TIFFIN recommendations could help to support the involvement of people with lived experience of homelessness in palliative and end-of-life-care care research.
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Palliative medicine · Jul 2024
Psychological health in Palliative Care: Thematic analysis of a psychiatrist's and an art therapist's clinical reflexive journals.
Patients receiving palliative care often face psychological distress, which can be challenging for clinicians to manage. Therefore, reflexive and visual journaling can be used as powerful techniques for clinician selfreflection and personal development. These journals are a form of practice wisdom, providing insights into psychological health in palliative care. ⋯ Good psychological health in palliative care extends beyond psychopathology and is influenced by the cardinal elements of being human, value systems and systemic elements in the therapeutic environment.
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Palliative medicine · Jun 2024
ReviewSupporting best practice in reflexive thematic analysis reporting in Palliative Medicine: A review of published research and introduction to the Reflexive Thematic Analysis Reporting Guidelines (RTARG).
Reflexive thematic analysis is widely used in qualitative research published in Palliative Medicine, and in the broader field of health research. However, this approach is often not used well. Common problems in published reflexive thematic analysis in general include assuming thematic analysis is a singular approach, rather than a family of methods, confusing themes and topics, and treating and reporting reflexive thematic analysis as if it is atheoretical. ⋯ Methodological incoherence and a lack of transparency are common problems in reflexive thematic analysis research published in Palliative Medicine. Coherence can be facilitated by researchers and reviewers striving to be knowing - thoughtful, deliberative, reflexive and theoretically aware - practitioners and appraisers of reflexive thematic analysis and developing an understanding of the diversity within the thematic analysis family of methods.