ABSTRACT
OBJECTIVES: Examine family safety-reporting after implementing a parent-nurse-physician-leader coproduced, health literacy-informed, family safety-reporting intervention for hospitalized families of children with medical complexity. METHODS: We implemented an English and Spanish mobile family-safety-reporting tool, staff and family education, and process for sharing comments with unit leaders on a dedicated inpatient complex care service at a pediatric hospital. Families shared safety concerns via predischarge surveys (baseline and intervention) and mobile tool (intervention). Three physicians with patient safety expertise classified events. We compared safety-reporting baseline (via survey) versus intervention (via survey and/or mobile tool) with generalized estimating equations and sub-analyzed data by COVID-19-era and educational attainment. We also compared mobile tool-detected event rates with hospital voluntary incident reporting. RESULTS: 232 baseline and 208 intervention parents participated (78.2% consented); 29.5% of baseline families versus 38.2% of intervention families reported safety concerns (P = .09). Adjusted odds ratio (95% CI) of families reporting safety concerns intervention versus baseline was 1.6 (1.0-2.6) overall, 2.6 (1.3-5.4) for those with < college education, and 3.1 (1.3-7.3) in the COVID-19-era subgroup. Safety concerns reported via mobile tool (34.6% of enrolled parents) included 42 medical errors, 43 nonsafety-related quality issues, 11 hazards, and 4 other. 15% of mobile tool concerns were also detected with voluntary incident reporting. CONCLUSIONS: Family safety-reporting was unchanged overall after implementing a mobile reporting tool, though reporting increased among families with lower educational attainment and during the COVID-19 pandemic. The tool identified many events not otherwise captured by staff-only voluntary incident reporting. Hospitals should proactively engage families in reporting to improve safety, quality, and equity.
ABSTRACT
BACKGROUND: Children with medical complexity (CMC) experience adverse events due to multiorgan impairment, frequent hospitalizations, subspecialty care, and dependence on multiple medications/equipment. Their families are well-versed in care and can help identify safety/quality gaps to inform improvements. Although previous studies have shown families identify important safety/quality gaps in hospitals, studies of inpatient safety/quality experience of CMC and their families are limited. To address this gap and identify otherwise unrecognized, family-prioritized areas for improving safety/quality of CMC, we conducted a secondary qualitative analysis of safety reporting surveys among families of CMC. OBJECTIVE: Explore safety reports from families of hospitalized CMC to identify areas to improve safety/quality. DESIGNS, SETTINGS AND PARTICIPANTS: We analyzed free-text responses from predischarge safety reporting surveys administered to families of CMC at a quaternary children's hospital from April 2018 to November 2020. Using a qualitative descriptive approach, we categorized responses into standard clinical categories. Three team members inductively generated an initial codebook to apply iteratively to responses. Reviewers coded responses collaboratively, resolved discrepancies through consensus, and generated themes. MAIN OUTCOME AND MEASURES: Outcomes: family-reported areas of safety/quality improvement. MEASURES: pre-discharge family surveys. RESULTS: Two hundred and eight/two hundred and thirty-seven (88%) families completed surveys; 83 families offered 138 free-text safety responses about medications, feeds, cares, and other categories. Themes included unmet expectations of hospital care/environment, lack of consistency, provider-patient communication lapses, families' expertise about care, and the value of transparency. CONCLUSION: To improve care of CMC and their families, hospitals can manage expectations about hospital limitations, improve consistency of care/communication, acknowledge family expertise, and recognize that family-observed quality concerns can have safety implications. Soliciting family input can help hospitals improve care in meaningful, otherwise unrecognized ways.