Language of Hope in Conversations between Pediatric Oncologists, Children with Advanced Cancer, and their Families.
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Purpose : Hope is a key driver of coping and decision-making for children with cancer and their families. Prior studies have shown that hope is bolstered, not fractured, by high-quality prognostic communication. However, clinicians describe a tension between conveying hope and honestly discussing poor prognosis. This prospective longitudinal observational study aimed to identify and characterize communication approaches used by oncologists and parents to navigate hope in the context of poor prognosis. Methods : Serial conversations between pediatric patients with poor-prognosis brain tumors, their families, and their medical teams were audio-recorded at disease reevaluation timepoints for up to 24 months or until death. Rapid qualitative analysis was used to characterize the frequency and content of hope-related dialogue. Results : 132 conversations were recorded for 30 brain tumor patient-parent-oncologist triads. Hope-related dialogue was identified in 73 (55%) of encounters. Oncologists introduced hope language in about two-thirds of these conversations. Hope dialogue could be described along two dimensions: temporal orientation and desired outcomes. Temporally, hope appeared in conversations as prospective, retrospective, or negated. Desired outcomes included hope for cure, hope for remission, hope for life prolongation and meaningful experiences, and hope for symptom management and comfort at the end of life. Conclusion : Hope dialogue may be an entry point for aligning with families, exploring prognostic understanding, and opening the door to deeper conversations about reframing hopes and goals of care. Future work should explore development of strategies to elicit and respond to patient and family hopes across the cancer trajectory.