Family Safety Reporting in Hospitalized Children With Medical Complexity

Abstract

BACKGROUND AND OBJECTIVES: Hospitalized children with medical complexity (CMC) are at high risk of medical errors. Their families are an underutilized source of hospital safety data. We evaluated safety concerns from families of hospitalized CMC and patient/parent characteristics associated with family safety concerns. METHODS: We conducted a 12-month prospective cohort study of English- and Spanish-speaking parents/staff of hospitalized CMC on 5 units caring for complex care patients at a tertiary care children’s hospital. Parents completed safety and experience surveys predischarge. Staff completed surveys during meetings and shifts. Mixed-effects logistic regression with random intercepts controlling for clustering and other patient/parent factors evaluated associations between family safety concerns and patient/parent characteristics. RESULTS: A total of 155 parents and 214 staff completed surveys (>89% response rates). 43% (n = 66) had ≥1 hospital safety concerns, totaling 115 concerns (1–6 concerns each). On physician review, 69% of concerns were medical errors and 22% nonsafety-related quality issues. Most parents (68%) reported concerns to staff, particularly bedside nurses. Only 32% of parents recalled being told how to report safety concerns. Higher education (adjusted odds ratio 2.94, 95% confidence interval [1.21–7.14], P = .02) and longer length of stay (3.08 [1.29–7.38], P = .01) were associated with family safety concerns. CONCLUSIONS: Although parents of CMC were infrequently advised about how to report safety concerns, they frequently identified medical errors during hospitalization. Hospitals should provide clear mechanisms for families, particularly of CMC and those from disadvantaged backgrounds, to share safety concerns. Actively engaging patients/families in reporting will allow hospitals to develop a more comprehensive, patient-centered view of safety.

In their own words: Safety and quality perspectives from families of hospitalized children with medical complexity

“…16 Further survey details were previously published. 13 Patient demographic/hospital administrative data were obtained from the Pediatric Health Information System. 17…”

“…Three trained investigators with complex care, patient safety/quality, and qualitative methods expertise jointly reviewed free-text responses. Responses were first retrospectively categorized deductively using a classification system from prior research, 13,[18][19][20] with categories including medication, feed, care, and so on.…”

“…12 To address the paucity of research in CMC, and identify unrecognized, family-prioritized areas for improving safety/quality in this understudied population, we conducted a secondary analysis of family survey data from a prospective cohort study about family safety reporting in hospitalized CMC. 13 We sought to categorize the types of safety reports made by families of hospitalized CMC to better understand their perspectives on inpatient safety/quality and inform future improvement efforts about issues that matter to families and might otherwise be missed. Our findings can help hospitals improve the safety/quality and patient/family-centeredness of care.…”

Journey Mapping to Improve Patient-Family Experience and Teamwork: Applying a Systems Thinking Tool to a Pediatric Ambulatory Clinic

“…9 Family engagement also improves patient safety for children, especially those with medical complexity, with increased identification of medical errors. 10 Journey mapping aligns with the pediatric approach of empathizing and improving the patient and family experience. It has been used to improve the experience of families who have children with autism as they navigate social and human services, medical, and education systems, identifying barriers and system-wide targets for improvement across the service spectrum.…”

“…Family Advisory Councils and Patient and Family Advisory Councils have been longstanding structures in pediatrics to engage patients, especially adolescents, and families as partners in improvement 9. Family engagement also improves patient safety for children, especially those with medical complexity, with increased identification of medical errors 10. Journey mapping aligns with the pediatric approach of empathizing and improving the patient and family experience.…”