Exploring Caregivers' Experiences With Diagnostic Uncertainty During a Hospitalization: A Qualitative Study

Pediatric hospitalists commonly care for children with symptoms unable to be attributed to a unifying diagnosis. Although pediatric hospitalists prioritize patient- and family-centered care, very little is known about the communication of uncertainty on family-centered rounds. This study explores caregivers' perceptions of conversations regarding diagnostic uncertainty during family-centered rounds on a pediatric hospital medicine service.

This qualitative study was conducted at a single, freestanding, 700 bed, quaternary care children's hospital. We conducted 15 semistructured interviews with a purposive sample of caregivers of children admitted with an uncertain diagnosis. Interviews explored caregivers' experiences throughout the diagnostic process and perceptions of conversations with the health care team on family-centered rounds. Interviews were recorded, transcribed verbatim, and deidentified. Three researchers independently coded transcripts using an inductive, thematic analysis approach.

Data analysis yielded 7 themes as follows: the importance of inherent individual caregiver contextual factors, the presence of caregiver expectations, general team communication skills, interprofessional team dynamics, the value of a plan and symptom management, time as a barrier and facilitator, and development of a therapeutic alliance. Caregiver experiences and perceptions were mapped along a diagnostic model to demonstrate opportunities for improvement when medical providers are faced with diagnostic uncertainty.

Understanding caregivers' experiences and perceptions of conversations regarding diagnostic uncertainty can assist medical providers in managing, communicating, and overcoming uncertainty. Results suggest uncertainty is complex and multilayered, however, uncertainty about a diagnosis can be overcome by providing symptom management and certainty in the plan and follow-up.