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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.

BACKGROUND AND OBJECTIVES Despite compelling evidence that patients and families report valid and unique safety information, particularly for children with medical complexity (CMC), hospitals typically do not proactively solicit patient or family concerns about patient safety. We sought to understand parent, staff, and hospital leader perspectives about family safety reporting in CMC to inform future interventions. METHODS This qualitative study was conducted at 2 tertiary care children’s hospitals with dedicated inpatient complex care services. A research team conducted approximately 60-minute semistructured, individual interviews with English and Spanish-speaking parents of CMC, physicians, nurses, and hospital leaders. Audio-recorded interviews were translated, transcribed, and verified. Two researchers coded data inductively and deductively developed and iteratively refined the codebook with validation by a third researcher. Thematic analysis allowed for identification of emerging themes. RESULTS We interviewed 80 participants (34 parents, 19 nurses and allied health professionals, 11 physicians, and 16 hospital leaders). Four themes related to family safety reporting were identified: (1) unclear, nontransparent, and variable existing processes, (2) a continuum of staff and leadership buy-in, (3) a family decision-making calculus about whether to report, and (4) misaligned staff and parent priorities and expectations. We also identified potential strategies for engaging families and staff in family reporting. CONCLUSIONS Although parents were deemed experts about their children, buy-in about the value of family safety reporting among staff and leaders varied, staff and parent priorities and expectations were misaligned, and family decision-making around reporting was complex. Strategies to address these areas can inform design of family safety reporting interventions attuned to all stakeholder groups.

OBJECTIVES Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child’s end-of-life (EOL) care. METHODS English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process. RESULTS Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child’s EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges. CONCLUSIONS We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.