Managing Conflicting Prognostic Communication Preferences in Pediatric Oncology

儿科肿瘤学中相互冲突的预后沟通偏好管理

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Abstract

IMPORTANCE: Families affected by childhood cancer often differ in how, when, and what prognostic information they wish to receive. Clinicians lack practical guidance for navigating these divergent preferences while maintaining trust and therapeutic alliance. OBJECTIVE: To characterize recommendations from patients, parents, and oncologists for managing prognostic communication in pediatric oncology when family members hold differing preferences. DESIGN, SETTING, AND PARTICIPANTS: This qualitative study was the first phase of the multiphase Revealing Information Genuinely and Honestly Across Time project. From June 18, 2022, to March 21, 2024, semistructured interviews were conducted with patients aged 12 to 25 years with high-risk or advanced cancer, parents of children with cancer or bereaved parents, and pediatric oncologists across 6 US cancer center sites. Interviews were audio recorded, transcribed, and analyzed using rapid qualitative methods. Data were analyzed from January to July 2025. EXPOSURE: Semistructured interviews exploring communication experiences and recommendations, codeveloped with bereaved parents and organized around the National Cancer Institute's core communication functions. MAIN OUTCOMES AND MEASURES: Participant-derived recommendations for how clinicians should navigate prognostic disclosure amidst differing family preferences. RESULTS: A total of 85 participants (25 patients, 40 parents, and 20 oncologists) contributed interviews. Four central recommendations were generated: (1) ask each person directly about communication preferences, (2) partner with families to create a communication plan with support from the care team, (3) offer space for individual conversations, and (4) respect parents' role in guiding disclosure to children. Participants emphasized the need for iterative, individualized communication strategies supported by multidisciplinary collaboration. CONCLUSIONS AND RELEVANCE: In this qualitative study of patients with high-risk or advanced cancer, parents, and pediatric oncologists, participants identified actionable approaches to manage differing prognostic communication preferences. These findings support training and interventions that equip clinicians to engage families through flexible, family-centered dialogue that sustains therapeutic alliance throughout serious illness.

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