Journal of palliative medicine
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Randomized Controlled Trial
Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer.
Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective: This study examined the impact of our newly developed web-based legacy intervention on dimensions of QOL among children (7-17 years old) with advanced cancer. ⋯ Overall, this is a null study that warrants discussion on possible reasons for limited findings. Future legacy intervention research is needed using qualitative and quantitative methods, as well as child and parent reports, to determine how such services may improve dimensions of QOL for pediatric palliative care populations. ClinicalTrials.gov number NCT04059393.
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Background: A major goal of hospice care is to provide individually tailored emotional and spiritual support to caregivers of hospice patients. Objectives: Examine the association between reported emotional support and caregivers' overall rating of hospice care, overall and by race/ethnicity/language. Subjects: We analyzed survey data corresponding to 657,805 decedents/caregivers who received care from 3160 hospice programs during January 2017-December 2018. ⋯ In contrast, the negative association between "too much" support and hospice rating was much smaller (p < 0.001) among caregivers of white and black decedents. "Too much" support was associated with more positive ratings among caregivers of Hispanic decedents (p < 0.001). Conclusions: Receipt of "too much" support is a less common and much weaker driver of poor hospice ratings than receipt of "too little" support for all groups, and is not always viewed negatively. This suggests that for hospice evaluation, "too much" support should not be scored equivalently to "too little" support and that providing enough support should be a hospice priority.
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Background: Music therapy (MT) and virtual reality (VR) have shown favorable patient-reported outcomes during serious illness. Objectives: To evaluate implementation measures of feasibility, usability, and acceptability of a VR-based MT intervention. Design: A pilot implementation study of a two-day VR-MT intervention using mixed methods. ⋯ Participants provided feedback on length, frequency of use, VR options, and timing of delivery. Conclusion: This VR-MT intervention was feasible, usable, and acceptable for hospitalized palliative care patients. Further study will test VR-MT outcomes.