1 40 1 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource May 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month <a href="https://pedpalascnetlibrary.omeka.net/collections/show/123">May List 2024</a> URL Address <a href="http://doi.org/10.1186/s12904-024-01401-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-024-01401-x</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure Publisher An entity responsible for making the resource available BMC Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource Child; Only Child; Human; Thematic Analysis; Surveys; Funding Source; Interviews; Clinical Assessment Tools; Content Validity; Delphi Technique; Instrument Validation; Patient Centered Care; Pilot Studies; Process Assessment (Health Care) Creator An entity primarily responsible for making the resource Ang FJL; Gandhi M; Ostbye T; Malhotra C; Malhotra R; Chong PH; Amin Z; Chow CCT; Tan TSZ; Tewani K; Finkelstein EA Description An account of the resource 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. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/s12904-024-01401-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01401-x</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Amin Z Ang FJL BMC Palliative Care Child Chong PH Chow CCT Clinical Assessment Tools content validity Delphi Technique Finkelstein EA Funding Source Gandhi M Human Instrument Validation Interviews Malhotra C Malhotra R May List 2024 Only Child Ostbye T Patient Centered Care Pilot Studies Process Assessment (Health Care) surveys Tan TSZ Tewani K Thematic Analysis