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YouTube as a source of information on clinical trials for paediatric cancer
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Ersta Sköndal University College, Stocholm, Sweden.ORCID iD: 0000-0001-6011-6740
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0002-0609-5683
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0002-4069-812X
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0001-7486-4678
2023 (English)In: Information, Communication and Society, ISSN 1369-118X, E-ISSN 1468-4462, Vol. 26, no 4, p. 716-729Article in journal (Refereed) Published
Abstract [en]

Little is known about the information parents of children with cancer find when searching for clinical trials information on YouTube. Thus, this study aimed to analyse the content, quality and reliability of YouTube videos focused on clinical trials for paediatric cancer. A descriptive cross-sectional design was used, and YouTube was searched using the phrases ‘clinical trials for children with cancer’ and ‘paediatric cancer clinical trials’. Videos that met inclusion criteria were assessed using the instruments Global Quality Scale and DISCERN. About half of the examined videos were in the GQS excellent-quality group and exhibited a total of 84,804 views. The mean time for videos was 5.7 minutes, they originated from the US or UK, were uploaded after 2016, and had a cancer centre/foundation or children hospital as video source. Half of them were focusing on early experimental trials and had a positive tone. Twenty percent were classified as useful without serious shortcomings, almost 50% as misleading with serious shortcomings, and 30% as inappropriate sources of information. In conclusion, most YouTube videos on paediatric cancer trials are not very informative and fall short of what could ethically be required regarding their facilitation of informed decision-making.

Place, publisher, year, edition, pages
Taylor & Francis, 2023. Vol. 26, no 4, p. 716-729
Keywords [en]
YouTube; social media; clinical trials; paediatric cancer; e-learning
National Category
Medical Ethics
Identifiers
URN: urn:nbn:se:uu:diva-453112DOI: 10.1080/1369118X.2021.1974515ISI: 000693941300001OAI: oai:DiVA.org:uu-453112DiVA, id: diva2:1593783
Available from: 2021-09-14 Created: 2021-09-14 Last updated: 2023-05-22Bibliographically approved

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Godskesen, ToveFrygner Holm, SaraHöglund, Anna TEriksson, Stefan

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