Parent Perspectives on Pediatric Inpatient OpenNotes

Abstract

Introduction: 169 U.S. health systems now engage in OpenNotes: a movement to share clinical notes with patients. Few studies have focused on releasing notes during hospitalization, pediatrics, or parents/caregiver perspectives.

Methods: A focus group was conducted with eight parents with experience caring for a hospitalized child at a Midwest children's hospital. In the 2-hour session, parents were asked about their perspectives of the idea of sharing inpatient doctors' daily notes with parents during their child's hospitalization. Qualitative analysis was conducted to elicit themes related to the potential benefits and challenges of sharing inpatient notes.

Results: The most mentioned benefits included notes providing information as a reference for improved family education/understanding, communication/continuity, and advocacy/empowerment. Challenges were primarily related to note content, impaired communication and negative impact on families.

Conclusion: Participants identified multiple potential benefits of and challenges to sharing notes with parents during their child's hospitalization but also acknowledged the impact on healthcare professionals who work alongside them.