Abstract
Background:
Pediatric oncologists often defer or soften prognostic disclosure to shield parents from distressing information. However, unclear prognostic communication can shape treatment decisions, potentially compromising end-of-life care and contributing to decisional regret in bereavement. Bereaved parent perspectives on strategies to enhance prognostic communication remain understudied.
Objectives:
To characterize bereaved parent preferences and recommendations for high-quality prognostic communication in the setting of poor-prognosis pediatric cancer.
Methods (Design, Setting, Subjects, and Measurements):
This qualitative interview study was conducted at an academic pediatric cancer center in the southeastern United States. Bereaved parents were eligible if their child had been diagnosed with cancer and died 6–24 months prior to enrollment. A multidisciplinary research team, including bereaved parents, developed a semi-structured interview guide to explore experiences, preferences, and recommendations for prognostic communication. Interview transcripts underwent rapid qualitative analysis to identify actionable themes underpinning parents’ recommendations.
Results:
Thematic saturation was achieved within 10 interviews, with striking alignment among bereaved parents regarding optimal prognostic disclosure. Three main themes were generated as pillars of best practice: (1) timely and transparent communication, (2) individualized approaches tailored to family needs, and (3) intentional creation of space for hope.
Conclusions:
Bereaved parents advocate for early and honest disclosure of prognostic information, challenging the misconception that withholding or softening prognostic details protects family well-being. Instead, they emphasize the need for a personalized approach that balances transparency with emotional support, including explicit space for hope.
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