Superdock Alexandra K, Cravo Emma, Christianson Caroline, Farner Harmony, Mehler Shoshana, Kaye Erica C
Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Rocky Vista University College of Osteopathic Medicine, Ivins, Utah, USA.
J Palliat Med. 2025 Jun 5. doi: 10.1089/jpm.2025.0136.
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. To characterize bereaved parent preferences and recommendations for high-quality prognostic communication in the setting of poor-prognosis pediatric cancer. 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. 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. 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.
儿科肿瘤学家常常推迟或淡化预后信息的披露，以使家长免受令人痛苦的信息影响。然而，预后沟通不清晰可能会影响治疗决策，潜在地损害临终关怀，并导致丧亲之痛中的决策遗憾。丧亲家长对改善预后沟通策略的看法仍未得到充分研究。为了描述丧亲家长在预后不良的儿科癌症情况下对高质量预后沟通的偏好和建议。这项定性访谈研究在美国东南部一家学术性儿科癌症中心进行。如果孩子被诊断患有癌症且在入组前6至24个月死亡，其丧亲家长符合条件。一个包括丧亲家长在内的多学科研究团队制定了一份半结构化访谈指南，以探讨预后沟通的经历、偏好和建议。访谈记录进行了快速定性分析，以确定支撑家长建议的可操作主题。在10次访谈中实现了主题饱和，丧亲家长在最佳预后披露方面达成了惊人一致。产生了三个主要主题作为最佳实践的支柱：（1）及时和透明的沟通，（2）根据家庭需求量身定制的个性化方法，以及（3）有意为希望创造空间。丧亲家长主张尽早且诚实地披露预后信息，挑战了隐瞒或淡化预后细节能保护家庭幸福的误解。相反，他们强调需要一种个性化方法，在透明度与情感支持之间取得平衡，包括明确为希望留出空间。
