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 August 2020 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 August 2020 List URL Address <a href="http://doi.org/10.1136/archdischild-2017-313480" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1136/archdischild-2017-313480</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 Ethics and patient and public involvement with children and young people Publisher An entity responsible for making the resource available Archives of Disease in Childhood - Education and Practice Date A point or period of time associated with an event in the lifecycle of the resource 2019 Subject The topic of the resource Humans; Adolescent; Child; Female; Male; Middle Aged; Adult; Guidelines as Topic; Patient Participation/px [Psychology]; United Kingdom; Research Personnel/px [Psychology]; Health Services Research/es [Ethics]; Health Services Research/st [Standards]; Patient Participation/sn [Statistics & Numerical Data]; Research Design/st [Standards]; Research Personnel/es [Ethics]; Research Personnel/st [Standards] Creator An entity primarily responsible for making the resource Mitchell S J; Slowther A; Coad J; Akhtar S; Hyde E; Khan D; Dale J Description An account of the resource Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care. PPI started during the application process and continued to guide and shape the research as it progressed. Ethical issues can arise at any time in PPI work. Although many can be predicted and planned for, the nature of PPI means that researchers can be presented with ideas and concepts they had not previously considered, requiring reflexivity and a reactive approach. This paper describes how we considered and addressed the potential ethical issues of PPI within our research. The approach that emerged provides a framework that can be adapted to a range of contexts and will be of immediate relevance to researchers and clinicians who are conducting PPI to inform their work. Copyright © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2019. All rights reserved. No commercial use is permitted unless otherwise expressly granted. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/archdischild-2017-313480" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-313480</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). 2019 Adolescent Adult Akhtar S Archives of Disease in Childhood - Education and Practice August 2020 List Child Coad J Dale J Female Guidelines As Topic Health Services Research/es [Ethics] Health Services Research/st [Standards] Humans Hyde E Khan D Male Middle Aged Mitchell S J Patient Participation/px [Psychology] Patient Participation/sn [Statistics & Numerical Data] Research Design/st [Standards] Research Personnel/es [Ethics] Research Personnel/px [Psychology] Research Personnel/st [Standards] Slowther A United Kingdom