Journal of palliative medicine
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Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential. Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3. English-speaking caregivers participating in palliative or end-of-life decisions for their child with incurable cancer or their seriously ill child in the intensive care unit participated. ⋯ Some acknowledged that answering the questions could evoke sad memories, but highlighted benefits for self and others. Attrition somewhat tempers the emphasis on benefits. Documenting perceived benefits and burdens in a standardized manner may accurately convey impact of study participation and yield new knowledge.
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As many hospitals scaled back integrative therapies during the COVID-19 pandemic, we instead turned to the multifaceted qualities of music to bridge physical and social divides. In this report, we describe palliative care music therapists as frontline providers utilizing evidence-based approaches to support healing and recovery for patients in the intensive care unit, patient and family care at end of life, and staff wellness. ⋯ Despite barriers brought on by the pandemic, the sensory and emotional immediacy of music bridged social distances at critical moments and addressed "suffering beyond words" among patients, families and health care workers. Our experience reinforced the need for MT as standard of interdisciplinary care during the pandemic and beyond.