Journal of palliative medicine
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Multicenter Study
Missing Voices: Lessons Learned from Nonparticipating Caregivers in Palliative Care Research.
Background: Our previous study to understand end-of-life care of adolescents and young adults (AYAs) had a suboptimal survey response rate by bereaved caregivers. Objective: To identify sociodemographic factors associated with caregiver nonparticipation. Design/Setting/Subjects:Post hoc analysis of a retrospective multicenter cohort study of caregivers of deceased AYAs from 2013 to 2016. ⋯ Caregivers of nonwhite AYAs were significantly less likely to participate (OR 0.35; 95% CI 0.12-0.87; p = 0.01). Conclusions: Caregivers of patients living in poverty are less likely to be reached by traditional recruitment efforts. Caregivers of racial/ethnic minority patients are less likely to participate overall.
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Racial disparities, including decreased hospice utilization, lower quality symptom management, and poor-quality end-of-life care have been well documented in Black Americans. Improving health equity and access to high-quality serious illness care is a national palliative care (PC) priority. Accomplishing these goals requires clinician reflection, engagement, and large-scale change in clinical practice and health-related policies. In this article, we provide an overview of key concepts that underpin racism in health care, discuss common serious illness disparities in Black Americans, and propose steps to promote the delivery of antiracist PC.
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Background: Unfacilitated writing activities, such as expressive writing, have not shown benefit in people with advanced cancer, but facilitated writing activities have yet to be fully explored. Objectives: To assess the feasibility and acceptability of facilitated writing activities determined by a writing coach in people with advanced incurable cancer. Design: This is a single-arm pilot study. ⋯ The majority of patients wanted the whole intervention continued. Conclusions: A writing coach using facilitated writing activities was feasible and acceptable in patients with advanced incurable cancer, but further studies are needed to assess impact. Clinical Trial Registration Number NCT 025 75898.
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Background: Scant research has examined the relationship between family characteristics and end-of-life (EOL) outcomes despite the importance of family at the EOL. Objectives: This study examined factors associated with the size and composition of family relationships on multiple EOL hospitalizations. Design: Retrospective analysis of the Utah Population Database, a statewide population database using linked administrative records. ⋯ Conclusions: First-degree family characteristics vary at the EOL. EOL care utilization may be influenced by family characteristics-in particular, presence of a spouse. Future studies should explore how the quality of family networks, as well as extended family, impacts other EOL characteristics such as hospice and palliative care use to better understand the EOL care experience.