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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This is the seventh entry in the Psychological Elements of Palliative Care (PEPC) series. Previous articles have focused on the psychological elements of the care we provide patients and the relationships we build with our referring clinician colleagues. In this entry, we focus on how the PEPC also impact clinician well being. ⋯ Such spaces vary in their configuration, but all share the opportunity to self-reflect and to experience emotional validation, normalization, and reality testing from peers or mentors. In mental health training, clinical supervision is one common format for creating such a space. While this can be replicated in the palliative care setting, other strategies include integrating a psychological orientation into interdisciplinary team meetings, creating peer support or process groups, and creating small groups within teams for longitudinal self-reflection.
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Background: No reliable instruments exist to measure prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer. Methods: We developed the Prognostic Awareness Impact Scale (PAIS) using a qualitative approach. During phase 1, we convened a working group with a transdisciplinary team of clinicians from oncology (n = 2), psychology (n = 2), psychiatry (n = 1), palliative care (n = 3), and survey development (n = 1) to identify key domains of PAIS. ⋯ We revised the PAIS by (1) replacing binary response options with ordinal agreement scales; and (2) reducing the number of items focused on cognitive understanding of prognosis. Conclusion: We developed a conceptual framework to capture prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer using the PAIS. Future work should focus on validating the PAIS by testing its psychometric properties.