{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T08:50:50Z","timestamp":1791967850548,"version":"4.3.4"},"reference-count":36,"publisher":"F1000 Research Ltd","license":[{"start":{"date-parts":[[2025,9,23]],"date-time":"2025-09-23T00:00:00Z","timestamp":1758585600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100010414","name":"Health Research Board","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100010414","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100001638","name":"Dublin City University","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100001638","id-type":"DOI","asserted-by":"publisher"}]},{"name":"PPI Ignite Network","award":["PPI-2021-001"],"award-info":[{"award-number":["PPI-2021-001"]}]},{"name":"Taighde \u00c9ireann \u2013 Research Ireland","id":[{"id":"https:\/\/ror.org\/010t7sr36","id-type":"ROR","asserted-by":"crossref"}]}],"content-domain":{"domain":["hrbopenresearch.org"],"crossmark-restriction":false},"short-container-title":["HRB Open Res"],"abstract":"<ns3:p>Background In paediatric palliative care (PPC) research, meaningful engagement of children and young people (CYP) remains underdeveloped. Despite widespread endorsement of patient and public involvement (PPI) for its ability to enhance research relevance, ethics, and overall impact, current studies provide limited insight into how CYP are involved \u2013 specifically, the types, levels (e.g., consultation, collaboration, child-led), and stages (from priority setting to dissemination). This scoping review aims to systematically map existing literature on the involvement of CYP (aged 4\u201324 years) as active PPI contributors in PPC research. We will identify and categorize reported outcomes and impacts, explore ethical, practical, and emotional considerations, and determine the key factors that enable or hinder meaningful youth participation. Methods The scoping review will adhere to the Joanna Briggs Institute (JBI) methodology. A comprehensive search will be conducted across Embase, CINAHL, PubMed, Scopus, and the Cochrane Library. The search will identify English-language empirical and methodological studies detailing CYP involvement at any stage of the research cycle within PPC. Two independent reviewers will screen titles, abstracts, and full texts, with a third reviewer resolving any discrepancies. Extracted data will be descriptively mapped using a structured extraction table. Conclusion This scoping review will provide a comprehensive synthesis of CYP involvement as PPI contributors in PPC research. It will illuminate effective engagement practices, highlight common challenges, and identify critical knowledge gaps. The insights generated from this review will inform the development of more inclusive, ethically grounded, and developmentally appropriate models for involving children and young people as true partners in future palliative care research.<\/ns3:p>","DOI":"10.12688\/hrbopenres.14236.1","type":"journal-article","created":{"date-parts":[[2025,9,23]],"date-time":"2025-09-23T16:40:08Z","timestamp":1758645608000},"page":"107","update-policy":"https:\/\/doi.org\/10.12688\/hrbopenres.crossmark-policy","source":"Crossref","is-referenced-by-count":2,"title":["Engaging Children and Young People in Pediatric Palliative Care Research: A Scoping Review Protocol of Patient and Public Involvement Practices"],"prefix":"10.12688","volume":"8","author":[{"ORCID":"https:\/\/orcid.org\/0009-0007-8736-6476","authenticated-orcid":false,"given":"Aima","family":"Molati","sequence":"first","affiliation":[{"name":"School of Nursing, Psychotherapy and Community Health, Faculty of Science and Health Glasnevin County Dublin D09 V209 Dublin City University - Glasnevin Campus"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2333-5044","authenticated-orcid":false,"given":"Razieh","family":"Safarifard","sequence":"additional","affiliation":[{"name":"School of Nursing, Psychotherapy and Community Health, Faculty of Science and Health Glasnevin County Dublin D09 V209 Dublin City University - Glasnevin Campus"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emma","family":"Nicholson","sequence":"additional","affiliation":[{"name":"School of Psychology Glasnevin County Dublin D09 V209 Dublin City University - Glasnevin Campus"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"Nevin","sequence":"additional","affiliation":[{"name":"School of Nursing, Psychotherapy and Community Health, Faculty of Science and Health Glasnevin County Dublin D09 V209 Dublin City University - Glasnevin Campus"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4396-5462","authenticated-orcid":false,"given":"Veronica","family":"Lambert","sequence":"additional","affiliation":[{"name":"School of Nursing, Psychotherapy and Community Health, Faculty of Science and Health Glasnevin County Dublin D09 V209 Dublin City University - Glasnevin Campus"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"2560","published-online":{"date-parts":[[2025,9,23]]},"reference":[{"key":"ref-1","doi-asserted-by":"publisher","first-page":"1010-1020","DOI":"10.1177\/02692163241266374","article-title":"Evaluating parent and public involvement activities within a paediatric palliative care research centre: route map to impactful and meaningful engagement.","volume":"38","author":"L Barrett","year":"2024","journal-title":"Palliat 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status","group":{"name":"current-referee-status","label":"Current Referee Status"}},{"value":"10.21956\/hrbopenres.15657.r50352, Duncan Randall, Department of Nursing Sciences, Bournemouth University, 09 Oct 2025, version 1, indexed","URL":"https:\/\/hrbopenresearch.org\/articles\/8-107\/v1#referee-response-50352","order":0,"name":"referee-response-50352","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"10.21956\/hrbopenres.15657.r52408, Jane Chudleigh, King's College London, London, England, 21 Jan 2026, version 1, indexed","URL":"https:\/\/hrbopenresearch.org\/articles\/8-107\/v1#referee-response-52408","order":1,"name":"referee-response-52408","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"This work is part of a larger programme of research supported by the Health Research Board and Taighde \u00c9ireann - Research Ireland (formerly Irish Research Council), with co-funding from the seven Universities at the centre of the PPI Ignite Network PPI Ignite Network [PPI-2021-001]. The PPI Ignite Network in DCU receives co-funding from Dublin City University. The funding bodies did not have a role in the protocol development and\/or design of the scoping review. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.","order":2,"name":"grant-information","label":"Grant Information"},{"value":"This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.","order":0,"name":"copyright-info","label":"Copyright"}]}}