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


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


Ang FJL; Finkelstein EA; Gandhi M


Pediatric Critical Care Medicine




 Child Care; Childhood Disease; Chronic Disease; Parental Attitude; Patient-Reported Outcome; Personal Experience; Caregiver Support; Child; Emergency Care; Empowerment; Health Care Delivery; Health Care Quality;Hospice Care; Hospital Care; Hospitalized Child; Human; Long Term Care; Neonatal Intensive Care Unit; Palliative Therapy; Review; Shared Decision Making; Systematic Review; Terminal Care


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. CONCLUSION(S): 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.Copyright © 2022 Lippincott Williams and Wilkins. All rights reserved.


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November 2022 List



Ang FJL; Finkelstein EA; Gandhi M, “Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review,” Pediatric Palliative Care Library, accessed September 25, 2023,