Family Safety Reporting in Medically Complex Children: Parent, Staff, and Leader Perspectives

Abstract

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.