Journal of pain and symptom management
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J Pain Symptom Manage · Oct 2024
ReviewWho, What, Where, and How? The State of Family Science in Pediatric Palliative Care.
Families are vital providers and recipients of pediatric palliative care (PPC) services. Understanding the scope and nature of evidence at the intersection of family science and PPC research is necessary to develop family-focused interventions that enhance child and family health. ⋯ The robust, descriptive, and individual-level evidence describing family impact of serious pediatric illness provides a solid foundation for future research priorities. Stronger integration of family techniques and diverse family voices in pediatric palliative care research can clarify family processes, illuminate structural barriers, and inform interventions that are responsive to family needs. These steps will enhance the education, policy, and clinical provision of PPC to all who would benefit, thereby advancing health equity for children living with serious illness and their families.
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J Pain Symptom Manage · Oct 2024
Case ReportsChallenges in Pediatric Home-Based Hospice and Palliative Care: A Case Series.
Pediatric home-based hospice and palliative care is a growing and important sub-field within the larger pediatric palliative care landscape. Despite research demonstrating the clinical and systemic efficacy of pediatric home-based hospice and palliative care, there remain barriers to its optimal development, implementation, and dissemination as well as best clinical practice knowledge gaps. This case series presents specific examples of ubiquitous challenges in pediatric home-based hospice and palliative care in hopes of guiding future research, education, advocacy, and program development efforts.
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J Pain Symptom Manage · Oct 2024
Opioid Access among Advanced Cancer Patients in Low- and Middle-Income Countries in Asia.
Most cancer-associated pain is experienced in low- and middle-income countries (LMICs) due to inequitable access to opioids. ⋯ Study findings emphasize the importance of palliative care training-even a minimal amount-in supporting access to opioids for advanced cancer patients. This study also highlights pragmatic site-level policies, such as extended morphine prescription durations, enabling access.
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J Pain Symptom Manage · Oct 2024
Assessing Pediatric Resident Needs in Grief and Bereavement Education.
Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families. ⋯ Pediatric residents indicate a strong desire for structured curricula on grief and bereavement focusing on resources that exist for families, approaches to grieving as a healthcare professional, and better understanding the experiences of bereaved families. These data may inform educators on priorities in training and support of pediatric residents on grief and bereavement.
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J Pain Symptom Manage · Oct 2024
What does "palliative care" represent in research using secondary data?
While much research has been done regarding "palliative care" using retrospective cohort studies of large datasets, the data sources may not be capturing specialty palliative care services. This article aims to clarify what source data are used in such studies, how specialty palliative care services are determined to have been provided or not, and mismatches between the nature of the data and the interpretation of researchers. Major US data sources that are examined include cancer registries such as the National Cancer Database; health systems' internal data; state and nation-level hospital admissions data; and claims data from Medicare and commercial payers. ⋯ Many used cancer registry data and mischaracterized palliative intent for a given cancer treatment as "palliative care services." Dozens relied on the diagnosis code for "encounter for palliative care" which lacks adequate validity for use in research. Researchers, peer-reviewers, and research consumers are cautioned about these potential pitfalls that lead to meaningless or misleading research papers. Suggestions are made regarding more rigorous methods and trustworthy data sources and additional research that can lead to consensus among researchers on these issues.