506 - Parent Experiences with Sharing Inpatient Safety Concerns for Children with Medical Complexity: A Qualitative Analysis

Poster Number: 506
Publication Number: 506.221

Madeline Q. Kieren, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Michelle M.. Kelly, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Miguel A. Garcia, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Tessa Chen, UW madison, cary, IL, United States; Jennifer Baird, Children's Hospital Los Angeles, Los Angeles, CA, United States; Helen Haskell, MAME, Columbia, SC, United States; Donna Luff, Boston Children's Hospital, Boston, MA, United States; Alexandra Mercer, Boston Children's Hospital, New York, NY, United States; Tiffany Ngo, Boston Children's Hospital, Alexandria, VA, United States; Bianca Quiñones-Pérez, Harvard Medical School/Boston Children’s Hospital, San Diego, CA, United States; David N. Williams, Boston Children's Hospital, Boston, MA, United States; Alisa Khan, Harvard Medical School/Boston Children's Hospital, Boston MA, MA, United States

Background: Hospitalized children with medical complexity (CMC) — children with chronic, multisystem medical conditions — are susceptible to medical errors and experience higher rates of adverse events compared to other children. Although there is evidence that parents of hospitalized children, particularly those with medical complexity, have unique safety concerns, little is known about parents' experiences with the process of reporting these concerns during their child’s hospital stay.

Objective: To describe the experience and process of identifying and reporting inpatient safety concerns from the perspective of parents of children with medical complexity. 

Design/Methods: We conducted a secondary analysis of qualitative data from semi-structured interviews with 31 English and Spanish-speaking parents of CMC at two tertiary children’s hospitals. Interviews lasted 45-60 minutes and were audio-recorded, translated, and transcribed. Three researchers inductively and deductively coded transcripts using an iteratively refined codebook with validation by a fourth researcher. Thematic analysis was used to develop a conceptual model of inpatient parent safety reporting.

Results: Four steps emerged illustrating the process of inpatient parent safety concern reporting: (1) parent recognizing concern, (2) parent reporting concern, (3) staff/hospital response to concern, and (4) parent feelings of validation or invalidation (Figure 1). Many parents of CMC endorsed that they were the first to catch a safety concern and identified as unique reporters of safety information. Parents typically described reporting their concerns verbally and in real-time to the person they felt could most quickly remedy the situation. Some parents reported their concerns were not acknowledged or addressed, which led them to feel overlooked, disregarded, or judged. Others reported their concerns were acknowledged and addressed, resulting in parents feeling heard and seen and often leading to a change in clinical care (Table 1). 

Conclusion(s): Parents describe a multi-step process of reporting safety concerns during hospitalization and a spectrum of staff response and validation. Including families in safety reporting presents a unique opportunity for hospitals to identify safety concerns and take action to improve patient safety, trust, and parent experience. These findings can inform family-centered interventions that support reporting safety concerns in the inpatient setting.