Articles: palliative-care.
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Experience sampling methods typically involve multiple self-report assessments per day over consecutive days. Unlike traditional patient-reported outcome measures or interviews, such methods offer the possibility to capture the temporal fluctuations of experiences in daily environments, making them valuable for studying the daily lives of people with advanced illness. Yet, their use in palliative care research is limited. ⋯ Experience sampling methods hold potential to uncover the dynamics of everyday experiences of people with advanced illness. The methods offer considerable flexibility and options to answer a variety of research questions, but consideration is required regarding sampling protocols and participant burden. We showed appropriate feasibility and acceptable participant burden of the methods among people with advanced breast or advanced lung cancer.
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Palliative medicine · Feb 2025
ReviewWorking with people living with motor neurone disease and the impact on professionals' emotional and psychological well-being: A scoping review.
Integrated multidisciplinary care is required to manage the progressive and debilitating symptoms associated with motor neurone disease. Professionals can find providing the level of care required by this population clinically and emotionally challenging. To support those working with these patients it is important to understand the experience of the entire multidisciplinary team involved and the impact of working with motor neurone disease on their emotional and psychological well-being. ⋯ Positive experiences included job satisfaction, enhanced perspective and receiving gratitude, while negative implications such as stress, emotional exhaustion and burnout also featured. The demands of motor neurone disease patient care, the organisation of services and resources required to meet patient and family needs and the emotional burden for professionals involved, warrant greater recognition in clinical practice, guidelines and future research.
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J Pain Symptom Manage · Feb 2025
Distributed Opioids in Morphine Equivalent: A Global Measure of Availability for Palliative Care.
Estimates of serious health-related suffering (SHS) demonstrate immense unmet need for palliative care, predominately in low- and middle-income countries (LMICs). Because opioids are essential medicines in palliative care (PC), measuring their availability can be used to evaluate the capacity of health systems to meet need. ⋯ DOME and DOME%SHSNEED can be used to monitor health system progress to redress disparities and promote access to medically indicated opioid therapy in palliative care.
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Palliative medicine · Feb 2025
Community out-of-hours palliative care - 'It's a patchwork of services': A qualitative study exploring care provision.
People in receipt of community palliative care usually receive care from a range of services and require access to care 24/7. However, care outside of normal working hours varies, with little understanding of which models of care are optimal. ⋯ This study identifies key characteristics of four common models of out-of-hours palliative care, from the perspectives of professionals. Facilitators of high quality out-of-hours care include: a palliative care specific single point of access for patients; formal structures to integrate generalist/specialist services; and timely/skilled management of symptoms. We provide recommendations for a potential model incorporating these factors.
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J Pain Symptom Manage · Feb 2025
The distress and benefits of the Bereaved Family Survey: A mortality follow-back survey.
The Bereaved Family Survey is an important method for evaluating the quality of palliative care. ⋯ Bereaved family members experience both distress and benefits. There is need to devise ways to reduce distress and increase its benefits to continue assessing the quality of palliative care.