What do patients and families observe about pediatric safety?: A thematic analysis of real-time narratives

Abstract

Objectives: Data on inpatient safety are documented by hospital staff through incident reporting (IR) systems. Safety observations from families or patients are rarely captured. The Family Input for Quality and Safety (FIQS) study created a mobile health tool for pediatric patients and their families to anonymously report safety observations in real time during hospitalization. The study objectives were to describe these observations and identify domains salient to safety.

Methods: In this observational study, we analyzed pediatric patient safety reports from June 2017 to April 2018. Participants were: English-speaking family members and hospitalized patients ≥13 years old. The analysis had two stages: (1) assessment of whether narratives met established safety event criteria and whether there were companion IRs; (2) thematic analysis to identify domains.

Results: Of 248 enrolled participants, 58 submitted 120 narrative reports. Of the narratives, 68 (57%) met safety event criteria, while only 1 (0.8%) corresponded to a staff-reported IR. Twenty-five percent of narratives shared positive feedback about patient safety efforts; 75% shared constructive feedback. We identified domains particularly salient to safety: (1) patients and families as safety actors; (2) emotional safety; (3) system-centered care; and (4) shared safety domains, including medication, communication, and environment of care. Some domains capture data that is otherwise difficult to obtain (#1-3), while others fit within standard healthcare safety domains (#4).

Conclusions: Patients and families observe and report salient safety events that can fill gaps in IR data. Healthcare leaders should consider incorporating patient and family observations-collected with an option for anonymity and eliciting both positive and constructive comments.

Appendix Figure 1.. Family Input for Quality and Safety (FIQS) reporting tool selected screenshots.

Screenshot 1 shows the categories for event reporting. Screenshots 2a and 2b show the screens subsequent to choosing either the Medication (2a) or Communication (2b). Once a participant selects one of the sub-categories, the screen automatically scrolls to the bottom, where they can fill out the free-text entry box depicted in Screenshot 3. The free-text narratives entered here comprise the qualitative data for this study.

Appendix Figure 2.. CONSORT Flow Diagram

Note: For the CONSORT diagram and original quantitative study, the unit of analysis was the patient. Sometimes, there were dyads of patients / family members, however the unit was still the patient (n=235 patients). This contrasts to the qualitative study discussed in this manuscript, which used participants (n=248) as the unit of analysis. *These patients did not have a parent with them, were off unit, or had an active medical or social concern (e.g., difficult medical news that day).

Figure 1.. Domain mapping of patient and family observations about pediatric inpatient safety

Observations fell into several domains. Top-line domains were in two groups: Safety domains shared with the healthcare-defined safety framework; and patient/family defined safety domains. System-centered care refers to when the needs of the healthcare system (e.g., staff time pressures due to high acuity and understaffing, reliance on standardization to increase efficiency) conflicted with and were prioritized above the needs of the families or patients.