“We Were Still Left in the Back Field, Not Knowing”: Pediatric Cancer Patients and Parents Describe Obstacles to Prognostic Communication
ABSTRACT
Purpose
Patient/parent perceptions of poor‐quality prognostic disclosure have not been well described, and these data offer important lessons to shape clinical practice and communication skills training. In this study, we aimed to characterize patient/parent negative experiences with prognostic communication to inform future efforts to improve how clinicians disclose prognosis.
Patients and Methods
Semistructured interviews were conducted with a purposeful sample of pediatric cancer patients (n = 25) and parents (n = 40) across different timepoints in the progressive illness course extending into bereavement. Interviews were audio‐recorded, transcribed, and de‐identified for rapid qualitative analysis, in which multiple analysts used a standardized episode summary template to extract raw data specific to patient/parent narratives about prognostic disclosure experiences. Analysts engaged independently and collaboratively as a team in reflexive memo writing to identify negative experiences with prognostic communication, followed by team discussion to generate concepts and synthesize those concepts into themes.
Results
More than half of participants (59%) described negative experiences with prognostic disclosure, with parents highlighting distressing communication experiences more often than patients (parents: 32/40, 80% vs. patients: 6/25, 24%). Across patient/parent narratives, three main themes underpinned the perception of poor‐quality prognostic communication: (1) insufficient information, (2) overwhelming or contradictory information, and (3) absence of person‐centered connection.
Conclusion
Many patients/parents perceived prognostic disclosure to be suboptimal and identified specific features underpinning poor‐quality prognostic communication. These findings will inform future collaborative research with patients, parents, and multidisciplinary clinicians to codesign an intervention that individualizes prognostication to align with patient/parent preferences for receiving information and fostering connection.
