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. 2023 Sep;18(9):777-786.
doi: 10.1002/jhm.13178. Epub 2023 Aug 9.

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

Sangeeta Mauskar  1   2 , Tiffany Ngo  1 , Helen Haskell  3 , Nandini Mallick  4 , Alexandra N Mercer  1 , Jennifer Baird  5 , Kristin Bardsley  6 , Jay G Berry  1   2 , Katherine Copp  7 , Kate Humphrey  1   2 , Michelle M Kelly  8 , Christopher P Landrigan  1   2   9   10 , Susan Matherson  6 , Amanda McGeachey  11 , Amy Pinkham  6 , Jayne E Rogers  6 , Alisa Khan  1   2
Affiliations

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

Sangeeta Mauskar et al. J Hosp Med. 2023 Sep.

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.

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Conflict of interest statement

CONFLICT OF INTEREST STATEMENT

Dr. Christopher P. Landrigan has consulted with and holds equity in the I-PASS Institute, which seeks to train institutions in best handoff practices and aid in their implementation. Dr. Christopher P. Landrigan has received consulting fees from the Missouri Hospital Association/Executive Speakers Bureau for consulting on I-PASS. In addition, Dr. Christopher P. Landrigan has received monetary awards, honoraria, and travel reimbursement from multiple academic and professional organizations for teaching and consulting on sleep deprivation, physician performance, handoffs, and safety, and has served as an expert witness in cases regarding patient safety and sleep deprivation. Dr. Jennifer Baird has done consulting work for the I-PASS Patient Safety Institute. The I-PASS Patient Safety Institute is a company that seeks to train institutions in best handoff practices and aid in their implementation. The remaining authors declare no conflict of interest.

Figures

FIGURE 1
FIGURE 1
Five themes emerged that influence the quality and safety experience for families of children with medical complexity (CMC).
See this image and copyright information in PMC

References

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