In their own words: Safety and quality perspectives from families of hospitalized children with medical complexity. 2023

Sangeeta Mauskar, and Tiffany Ngo, and Helen Haskell, and Nandini Mallick, and Alexandra N Mercer, and Jennifer Baird, and Kristin Bardsley, and Jay G Berry, and Katherine Copp, and Kate Humphrey, and Michelle M Kelly, and Christopher P Landrigan, and Susan Matherson, and Amanda McGeachey, and Amy Pinkham, and Jayne E Rogers, and Alisa Khan
Department of Pediatrics, Division of General Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA.

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. Explore safety reports from families of hospitalized CMC to identify areas to improve safety/quality. 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. Outcomes: family-reported areas of safety/quality improvement. pre-discharge family surveys. 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. 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.

UI MeSH Term Description Entries
D010351 Patient Discharge The administrative process of discharging the patient, alive or dead, from hospitals or other health facilities. Discharge Planning,Discharge Plannings,Discharge, Patient,Discharges, Patient,Patient Discharges,Planning, Discharge,Plannings, Discharge
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D002673 Child, Hospitalized Child hospitalized for short term care. Hospitalized Child,Children, Hospitalized,Hospitalized Children
D003142 Communication The exchange or transmission of ideas, attitudes, or beliefs between individuals or groups. Miscommunication,Misinformation,Social Communication,Communication Programs,Communications Personnel,Personal Communication,Communication Program,Communication, Personal,Communication, Social,Communications, Social,Miscommunications,Misinformations,Personnel, Communications,Program, Communication,Programs, Communication,Social Communications
D006760 Hospitalization The confinement of a patient in a hospital. Hospitalizations
D006776 Hospitals, Pediatric Special hospitals which provide care for ill children. Pediatric Hospitals,Hospital, Pediatric,Pediatric Hospital
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man

Related Publications

Sangeeta Mauskar, and Tiffany Ngo, and Helen Haskell, and Nandini Mallick, and Alexandra N Mercer, and Jennifer Baird, and Kristin Bardsley, and Jay G Berry, and Katherine Copp, and Kate Humphrey, and Michelle M Kelly, and Christopher P Landrigan, and Susan Matherson, and Amanda McGeachey, and Amy Pinkham, and Jayne E Rogers, and Alisa Khan
April 2021, Medical teacher,
Sangeeta Mauskar, and Tiffany Ngo, and Helen Haskell, and Nandini Mallick, and Alexandra N Mercer, and Jennifer Baird, and Kristin Bardsley, and Jay G Berry, and Katherine Copp, and Kate Humphrey, and Michelle M Kelly, and Christopher P Landrigan, and Susan Matherson, and Amanda McGeachey, and Amy Pinkham, and Jayne E Rogers, and Alisa Khan
January 2024, Disability and rehabilitation,
Sangeeta Mauskar, and Tiffany Ngo, and Helen Haskell, and Nandini Mallick, and Alexandra N Mercer, and Jennifer Baird, and Kristin Bardsley, and Jay G Berry, and Katherine Copp, and Kate Humphrey, and Michelle M Kelly, and Christopher P Landrigan, and Susan Matherson, and Amanda McGeachey, and Amy Pinkham, and Jayne E Rogers, and Alisa Khan
January 2024, Pediatrics,
Sangeeta Mauskar, and Tiffany Ngo, and Helen Haskell, and Nandini Mallick, and Alexandra N Mercer, and Jennifer Baird, and Kristin Bardsley, and Jay G Berry, and Katherine Copp, and Kate Humphrey, and Michelle M Kelly, and Christopher P Landrigan, and Susan Matherson, and Amanda McGeachey, and Amy Pinkham, and Jayne E Rogers, and Alisa Khan
December 2008, Journal of clinical nursing,
Sangeeta Mauskar, and Tiffany Ngo, and Helen Haskell, and Nandini Mallick, and Alexandra N Mercer, and Jennifer Baird, and Kristin Bardsley, and Jay G Berry, and Katherine Copp, and Kate Humphrey, and Michelle M Kelly, and Christopher P Landrigan, and Susan Matherson, and Amanda McGeachey, and Amy Pinkham, and Jayne E Rogers, and Alisa Khan
October 2021, Medical teacher,
Sangeeta Mauskar, and Tiffany Ngo, and Helen Haskell, and Nandini Mallick, and Alexandra N Mercer, and Jennifer Baird, and Kristin Bardsley, and Jay G Berry, and Katherine Copp, and Kate Humphrey, and Michelle M Kelly, and Christopher P Landrigan, and Susan Matherson, and Amanda McGeachey, and Amy Pinkham, and Jayne E Rogers, and Alisa Khan
January 1988, Child psychiatry and human development,
Sangeeta Mauskar, and Tiffany Ngo, and Helen Haskell, and Nandini Mallick, and Alexandra N Mercer, and Jennifer Baird, and Kristin Bardsley, and Jay G Berry, and Katherine Copp, and Kate Humphrey, and Michelle M Kelly, and Christopher P Landrigan, and Susan Matherson, and Amanda McGeachey, and Amy Pinkham, and Jayne E Rogers, and Alisa Khan
March 2010, Critical care medicine,
Sangeeta Mauskar, and Tiffany Ngo, and Helen Haskell, and Nandini Mallick, and Alexandra N Mercer, and Jennifer Baird, and Kristin Bardsley, and Jay G Berry, and Katherine Copp, and Kate Humphrey, and Michelle M Kelly, and Christopher P Landrigan, and Susan Matherson, and Amanda McGeachey, and Amy Pinkham, and Jayne E Rogers, and Alisa Khan
January 2017, Ochsner journal,
Sangeeta Mauskar, and Tiffany Ngo, and Helen Haskell, and Nandini Mallick, and Alexandra N Mercer, and Jennifer Baird, and Kristin Bardsley, and Jay G Berry, and Katherine Copp, and Kate Humphrey, and Michelle M Kelly, and Christopher P Landrigan, and Susan Matherson, and Amanda McGeachey, and Amy Pinkham, and Jayne E Rogers, and Alisa Khan
May 2017, Molecular reproduction and development,
Sangeeta Mauskar, and Tiffany Ngo, and Helen Haskell, and Nandini Mallick, and Alexandra N Mercer, and Jennifer Baird, and Kristin Bardsley, and Jay G Berry, and Katherine Copp, and Kate Humphrey, and Michelle M Kelly, and Christopher P Landrigan, and Susan Matherson, and Amanda McGeachey, and Amy Pinkham, and Jayne E Rogers, and Alisa Khan
August 2008, Minnesota medicine,
Copied contents to your clipboard!