Journal of palliative medicine
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Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.
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Background: Individuals with cystic fibrosis (CF) experience symptoms affecting quality of life and may benefit from palliative care (PC). Objectives: To present results of content analysis from open-ended survey questions assessing knowledge and experiences with PC among CF stakeholders. Design, Setting, Subjects: Online surveys were sent to CF stakeholders through CF-specific listservs predominantly in the United States. ⋯ Some believed PC and lung transplant were mutually exclusive. Conclusion: Respondents felt PC is underutilized for CF, and that people with CF may miss out on the benefits of PC. Among stakeholders, respondents felt people with CF would benefit from access to primary and secondary PC services.
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Background: Many seriously ill patients in need of palliative care (PC) globally never receive it, partly due to a lack of well-trained providers. Objectives: We analyzed feedback from international participants in a U. S.-based PC training course: "Palliative Care Education and Practice" to identify elements of the course that would meet the needs of international learners. ⋯ Results: Key barriers to PC practice change included lack of awareness of PC among local providers, challenges navigating institutional leaders, and a lack of trained providers. Participants requested an increased focus on topics such as resiliency, leadership, and pediatric PC. Conclusions: To address the needs of international learners, PC courses should consider offering a specific track for international participants, as well as an increased focus on topics such as resiliency, leadership development, and pediatric PC.