Palliative medicine
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Palliative medicine · Jun 2024
Creating more comparable cohorts in observational palliative care studies: A proposed framework to improve applicability and replicability of research.
Palliative care is characterised by heterogeneous patient and caregiver populations who are provided care in different health systems and a research base including a large proportion of observational, mostly retrospective studies. The inherent diversity of palliative care populations and the often inadequate study descriptions challenge the application of new knowledge into practice and reproducibility for confirmatory studies. Being able to define systematically study populations would significantly increase their generalisability and effective translation into practice. ⋯ Anchoring the cohort to reproducible data points will help create more comparable cohorts in palliative care whilst mitigating its inherent heterogeneity. This, in turn, will help optimise the generalisability, applicability and reproducibility of observational palliative care studies to strengthen the evidence base and improve practice.
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Palliative medicine · Jun 2024
ReviewThe effectiveness of out-of-hours palliative care telephone advice lines: A rapid systematic review.
People with palliative care needs and their carers often rely on out-of-hours services to remain at home. Policymakers have recommended implementing telephone advice lines to ensure 24/7 access to support. However, the impact of these services on patient and carer outcomes, as well as the health care system, remains poorly understood. ⋯ Despite their increasing use, evidence for the clinical- and cost-effectiveness of palliative care telephone advice lines remains limited, primarily due to the lack of robust comparative studies. There is a need for more rigorous evaluations incorporating experimental or quasi-experimental methods and longer follow-up, and standardised reporting of telephone advice line models and outcomes, to guide policy and practice.
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Palliative medicine · Jun 2024
What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study.
Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. ⋯ To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care.
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Palliative medicine · Jun 2024
Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers.
The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. ⋯ Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.
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Palliative medicine · Jun 2024
"Collateral beauty." Experiences and needs of professionals caring for parents continuing pregnancy after a life-limiting prenatal diagnosis: A grounded theory study.
Caring for parents continuing pregnancy after learning about a severe life-limiting condition in their unborn is challenging. Most existing studies focus on affected families, whereas research on the subjective experience of care professionals is scarce. ⋯ Perinatal palliative care demands a high level of personal engagement but is experienced as highly rewarding by care professionals.