The Experience of Parents of Hospitalized Children Living With Medical Complexity.

Autor:	Kemp KA; Departments of Community Health Sciences.; Patient Engagement Platform, Alberta Strategy for Patient-Oriented Research., Fairie P; Departments of Community Health Sciences.; Patient Engagement Platform, Alberta Strategy for Patient-Oriented Research., Steele B; Paediatrics., McNeil D; Maternal, Neonatal, Child and Youth Strategic Clinical Network, Alberta Health Services., Kromm S; Maternal, Neonatal, Child and Youth Strategic Clinical Network, Alberta Health Services., Johnson D; Paediatrics.; Maternal, Neonatal, Child and Youth Strategic Clinical Network, Alberta Health Services.; Physiology and Pharmacology, Cumming School of Medicine, University of Calgary., Santana MJ; Departments of Community Health Sciences mjsantan@ucalgary.ca.; Patient Engagement Platform, Alberta Strategy for Patient-Oriented Research.; Paediatrics.
Jazyk:	angličtina
Zdroj:	Hospital pediatrics [Hosp Pediatr] 2021 Oct; Vol. 11 (10), pp. 1065-1072.
DOI:	10.1542/hpeds.2020-003038
Abstrakt:	Background and Objectives: Children living with medical complexity (CMC) experience frequent hospital admissions. Validated patient-reported experience measures may inform care improvements in this cohort. Our objectives were to examine the comprehensive inpatient experience of CMC by using a validated patient-reported experience measure and compare the results with all other respondents at 2 academic pediatric hospitals in a western Canadian province. Methods: Parents completed the Child Hospital Consumer Assessment of Healthcare Providers and Systems survey. Surveys were linked with inpatient records, and an accepted case definition was used to extract records pertaining to CMC. Results were reported as percent in "top box," represented by the most positive answer choice to each measure. Odds of reporting a top box response were calculated while controlling for demographic and clinical features. Results: From October 2015 to March 2019, 4197 surveys (1515 CMC; 2682 non-CMC) were collected. Among CMC, the highest-rated measures pertained to being kept informed while in the emergency department, a willingness to recommend the hospital, and parents having a clear understanding of their role in their child's care. The lowest-rated measures pertained to preventing mistakes and reporting concerns and the quietness of the hospital room at night. Compared with others, parents of CMC reported lower raw results on 20 of the 28 measures. They also reported lower a odds of reporting a top box score on 2 measures and higher odds on 1. Conclusions: Parents of CMC revealed many perceived gaps. These findings can be used to inform strategies to improve care among CMC and policies to support the care of CMC and their families. Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose. (Copyright © 2021 by the American Academy of Pediatrics.)
Databáze:	MEDLINE
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