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

Area of Science:

• Pediatric hospital medicine
• Qualitative research
• Patient- and family-centered care

Background:

• Pediatric hospitalists frequently manage children with undiagnosed symptoms.
• Communication of diagnostic uncertainty during family-centered rounds is poorly understood.
• Caregiver perspectives on uncertainty communication are crucial for patient-centered care.

Purpose of the Study:

• To explore caregivers' perceptions of communication regarding diagnostic uncertainty.
• To understand caregiver experiences during family-centered rounds for children with uncertain diagnoses.

Main Methods:

• Qualitative study using 15 semi-structured interviews with caregivers.
• Conducted at a quaternary care children's hospital.
• Thematic analysis of interview transcripts to identify key themes.

Main Results:

• Seven themes emerged: caregiver context, expectations, team communication, interprofessional dynamics, care plans, time, and therapeutic alliance.
• Caregiver experiences were mapped to a diagnostic model, highlighting improvement areas.
• Effective communication and a clear plan are vital for managing uncertainty.

Conclusions:

• Understanding caregiver experiences is key to improving communication about diagnostic uncertainty.
• Diagnostic uncertainty is complex, but can be mitigated by symptom management and a defined plan.
• Clear communication and a solid plan can help families navigate diagnostic uncertainty.