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BMC Palliative Care
Published in: BMC Palliative Care 1/2024

Open Access 01-12-2024 | Research

Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure

Authors: Felicia Jia Ler Ang, Mihir Gandhi, Truls Ostbye, Chetna Malhotra, Rahul Malhotra, Poh Heng Chong, Zubair Amin, Cristelle Chu-Tian Chow, Teresa Shu Zhen Tan, Komal Tewani, Eric Andrew Finkelstein

Published in: BMC Palliative Care | Issue 1/2024

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Abstract

Background

Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of seriously ill children. Formative work involving in-depth interviews with parents of children with serious illnesses generated 66 draft items describing key QoC processes. Our present aim is to develop a comprehensive parent-reported experience measure of QoC for children with serious illnesses and evaluate its content validity and feasibility.

Methods

For evaluating content validity, we conducted a three-round Delphi expert panel review with 24 multi-disciplinary experts. Next, we pre-tested the items and instructions with 12 parents via cognitive interviews to refine clarity and understandability. Finally, we pilot-tested the full measure with 30 parents using self-administered online surveys to finalize the structure and content.

Results

The Delphi expert panel review reached consensus on 68 items. Pre-testing with parents of seriously ill children led to consolidation of some items. Pilot-testing supported feasibility of the measure, resulting in a comprehensive measure comprising 56 process assessment items, categorized under ten subthemes and four themes: (1) Professional qualities of healthcare workers, (2) Supporting parent-caregivers, (3) Collaborative and holistic care, and (4) Efficient healthcare structures and standards. We named this measure the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS).

Conclusions

PRECIOUS is the first comprehensive measure and has the potential to standardize assessment of QoC for seriously ill children from parental perspectives. PRECIOUS allows for QoC process evaluation across contexts (such as geographic location or care setting), different healthcare workers, and over the illness trajectory for children suffering from a range of serious illnesses.
Appendix
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Metadata
Title
Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure
Authors
Felicia Jia Ler Ang
Mihir Gandhi
Truls Ostbye
Chetna Malhotra
Rahul Malhotra
Poh Heng Chong
Zubair Amin
Cristelle Chu-Tian Chow
Teresa Shu Zhen Tan
Komal Tewani
Eric Andrew Finkelstein
Publication date
01-12-2024
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2024
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-024-01401-x

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