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
The Home-Based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of Psychometric Properties.
Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and quality of home-based PPHC in the U.S. Ensuring equitable, high-quality home-based PPHC for all children requires the evaluation of families' care experiences and assessment of whether these experiences are aligned with their needs and priorities. ⋯ The EXPERIENCE Measure is a tool with evidence for reliable and valid scores to evaluate family-reported home-based PPHC experiences at the time care is being received. Future work will evaluate the usability (i.e., acceptability, feasibility, and clinical actionability) of EXPERIENCE, including the sensitivity of the instrument to change over time and its impact on real-time clinical actions.
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J Pain Symptom Manage · Oct 2024
Comparative StudyContent Analysis of Serious Illness Conversation Documentation: Structured vs. Free-Text Information.
Clear, accessible, and thorough documentation of serious illness conversations helps ensure that critical information patients share with clinicians is reflected in their future care. ⋯ How serious illness conversations are documented in the electronic health record may impact the content captured. Future quality improvement efforts should seek to consolidate documentation sources to improve care and information retention.
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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.