Articles: palliative-care.
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Palliative medicine · Sep 2024
ReviewPrimary palliative care in low- and middle-income countries: A systematic review and thematic synthesis of the evidence for models and outcomes.
Serious health-related suffering is predicted to double in low- and middle-income countries by 2060. Primary care offers the best opportunity to meet Universal Health Coverage in an equitable way. Primary palliative care growth should be evidence-based to ensure provision is feasible, acceptable and culturally congruent. ⋯ Evidence supporting primary palliative care in low- and middle-income countries is limited, and much of the published literature comes from Asia and southern Africa. Health systems in low- and middle-income countries have unique strengths and needs that affect primary palliative care services that should guide how services evolve to meet future need.
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Intensive care medicine · Sep 2024
ReviewAssessing palliative care practices in intensive care units and interpreting them using the lens of appropriate care concepts. An umbrella review.
Intensive care units (ICUs) have significant palliative care needs but lack a reliable care framework. This umbrella review addresses them by synthesising palliative care practices provided at end-of-life to critically ill patients and their families before, during, and after ICU admission. ⋯ This umbrella review encapsulates current palliative care practices in ICUs, influencing patient and family outcomes and providing insights into developing an appropriate care framework for critically ill patients needing end-of-life care and their families.
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Palliative care is recommended for all people with dementia from diagnosis through end-of-life. However, palliative care needs and effective elements of palliative care are not well-defined for the earlier stages of dementia. ⋯ The literature on palliative care in early dementia is sparse. Future studies should focus on assessment tools for optimizing timing of palliative care in early dementia, gaining better understanding of patient and family needs during early phases of disease, and providing training for providers and families in long-term relationships and communication around goals of care and future planning.
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Pediatric palliative care focuses on improving the quality-of-life in children with severe illnesses and their families, addressing relief of pain and other physical symptoms, as well as emotional, social and spiritual support. Its approach is comprehensive and multidisciplinary. Severe neurological diseases are life-limiting and threatening, significantly affecting the well-being of the child. ⋯ Early intervention can improve quality-of-life, reduce unnecessary hospitalizations, and provide emotional support for the family. Coordination between different health services is essential to ensure patient-centered care. Education and training of health professionals in this field are essential to improve the care of these children.
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J Pain Symptom Manage · Sep 2024
Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository.
Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. ⋯ Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.