Parent Experiences with the Process of Sharing Inpatient Safety Concerns for Children with Medical Complexity: A Qualitative Analysis

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

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 the process of inpatient parent safety reporting.

Results: We identified four steps illustrating the process of inpatient parent safety concern reporting 1) parent recognizing concern, 2) parent reporting concern, 3) staff/hospital response continuum, and 4) parent feelings of validation/invalidation. Many parents endorsed that they were the first to catch a safety concern and were identified as unique reporters of safety information. Parents typically described reporting their concerns verbally and in real-time to the person they felt could quickly remedy the situation. There was a spectrum of validation. Some parents reported their concerns were not acknowledged and 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 changes in clinical care.

Conclusions: Parents described a multi-step process of reporting safety concerns during hospitalization and a spectrum of staff response and validation. These findings can inform family-centered interventions that support safety concern reporting in the inpatient setting.