• Sangeeta Mauskar, Tiffany Ngo, Helen Haskell, Nandini Mallick, Alexandra N Mercer, Jennifer Baird, Kristin Bardsley, Jay G Berry, Katherine Copp, Kate Humphrey, Michelle M Kelly, Christopher P Landrigan, Susan Matherson, Amanda McGeachey, Amy Pinkham, Jayne E Rogers, and Alisa Khan.
• Department of Pediatrics, Division of General Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA.
• J Hosp Med. 2023 Sep 1; 18 (9): 777786777-786.

BackgroundChildren 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.ObjectiveExplore safety reports from families of hospitalized CMC to identify areas to improve safety/quality.Designs, Settings And ParticipantsWe 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 MeasuresOutcomes: family-reported areas of safety/quality improvement.Measurespre-discharge family surveys.ResultsTwo 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.ConclusionTo 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.© 2023 Society of Hospital Medicine.

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