Parent-Reported Experience Measures of Care for Children With Serious Illnesses: A Scoping Review.

Autor:	Ang FJL; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore.; Program in Health Services and Systems Research, Duke-NUS Medical School, Singapore., Finkelstein EA; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore.; Program in Health Services and Systems Research, Duke-NUS Medical School, Singapore., Gandhi M; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore.; Singapore Clinical Research Institute, Singapore.; Tampere Center for Child, Adolescent, and Maternal Health Research, Tampere University, Kauppi Campus, Tampere, Finland.
Jazyk:	angličtina
Zdroj:	Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies [Pediatr Crit Care Med] 2022 Sep 01; Vol. 23 (9), pp. e416-e423. Date of Electronic Publication: 2022 May 26.
DOI:	10.1097/PCC.0000000000002996
Abstrakt:	Objective: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify and describe steps followed in the measure development process, including where gaps lie and how PaREMs may be improved in future efforts, and 4) help service providers choose a PaREM suitable for their service delivery setting and strategy. Data Sources: Relevant articles were systematically searched from PubMed, CINAHL, and Scopus EBSCOhost databases until June 10, 2021, followed by a manual reference list search of highly relevant articles. Study Selection: Abstracts were screened, followed by a full-text review using predetermined inclusion and exclusion criteria. Data Extraction: A standardized data extraction tool was used. Data Synthesis: Sixteen PaREMs were identified. There were large variances in the development processes across measures, and most have been developed in high-income, English-speaking Western countries. Most only assess the quality of acute inpatient care. Few measures can be used by multiple service providers or chronic care, and many do not capture all relevant domains of the parent experience. Conclusions: Service providers should integrate PaREMs into their settings to track and improve the quality of care. Given the multidisciplinary nature of pediatric care and the often-unpredictable disease trajectories of seriously ill children, measures that are applicable to multiple providers and varying lengths of care are essential for standardized assessment of quality of care and coordination among providers. To improve future PaREM development, researchers should follow consistent and methodologically robust steps, ideally in more diverse sociocultural and health systems contexts. Future measures should widen their scope to be applicable over the disease trajectory and to multiple service providers in a child's network of care for a comprehensive evaluation of experience. Competing Interests: The authors have disclosed that they do not have any potential conflicts of interest. (Copyright © 2022 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)
Databáze:	MEDLINE
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