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 2023 Special Edition 1 - Parent Perspectives 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 2023 SE1 - Parent Perspectives URL Address <a href="http://doi.org/10.1080/23294515.2018.1430709" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/23294515.2018.1430709</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 Children's perspectives on the benefits and burdens of research participation Publisher An entity responsible for making the resource available AJOB Empirical Bioethics Date A point or period of time associated with an event in the lifecycle of the resource 2018 Creator An entity primarily responsible for making the resource Barned C; Dobson J; Stintzi A; Mack D; O'Doherty KC Description An account of the resource BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their illness. In particular contexts, such as learning health care systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. A growing body of literature has focused on children's perspectives as research subjects; however, a relatively understudied aspect concerns children's experiences of research in clinics where they are also patients. METHODS: We interviewed 25 Canadian children and adolescents living with inflammatory bowel disease (IBD) about their experiences of research participation. RESULTS: Our participants described aspects of the research process and particular experiences as benefits and others as burdens. Benefits included helping others, receiving incentives, receiving the results of previous studies, and participating in fun activities. Burdens included the time required for particular types of research, physical and psychological discomfort, and feelings of obligation. CONCLUSIONS: Our study describes the experiences of children participating in research at a site that integrates research and clinical care. Our participants described experiences that often go unreported (such as feelings of obligation); we mention these as important considerations to be mindful of when interacting with children as (potential) research participants in an LHS and when thinking about research ethics protocols or the assent/consent process. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1080/23294515.2018.1430709" target="_blank" rel="noreferrer noopener">10.1080/23294515.2018.1430709</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). 2018 2023 SE1 - Parent Perspectives Adolescent AJOB empirical bioethics Attitude Barned C benefits burdens Canada Child Child Health Children Chronic Disease Delivery of Health Care Dobson J Emotions Ethics Female health care systems Humans Inflammatory Bowel Diseases Informed Consent By Minors/psychology Learning Mack D Male Motivation O'Doherty KC Patient Participation psychology Qualitative Research Research Research Subjects Stintzi A