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Ethical Considerations When Conducting Pan-European Research with and for Adolescent Young Carers
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. The Swedish Family Care Competence Centre (NKA), Swede.ORCID iD: 0000-0001-7609-4822
Vanderbilt University School of Nursing, USA.ORCID iD: 0000-0003-2306-8182
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. The Swedish Family Care Competence Centre (NKA), Sweden.ORCID iD: 0000-0002-1497-0011
The Netherlands Institute for Social Research (SCP), Netherlands.ORCID iD: 0000-0003-4533-2562
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2023 (English)In: Ethics and social welfare, ISSN 1749-6535, E-ISSN 1749-6543, Vol. 17, no 2, p. 125-158Article in journal (Refereed) Published
Abstract [en]

Adolescent young carers (AYCs) are a sub-group of young carers who carry out significant or substantial caring tasks and assume a level of responsibility which would usually be associated with an adult. They are a potentially vulnerable group of minors because of the risk factors associated with their caring role. AYCs face a critical transition phase from adolescence to adulthood often with a lack of tailored support from service providers. The recently completed European funded ‘ME-WE’ project, which forms the focus of this paper, aimed to change the ‘status quo’ by advancing the situation of AYCs in Europe, via responsive research and knowledge translation actions. This paper outlines the participatory, co-creation approach employed in the project to optimise AYC’s involvement. It describes the ethical framework adopted by the project consortium to ensure the wellbeing of AYCs within all project activities. Ethical issues that arose in the field study work in all six countries are presented, followed by a discussion of the level of success or otherwise of the consortium to address these issues. The paper concludes with lessons learned regarding ethically responsible research with and for AYCs that are likely transferable to other vulnerable research groups and pan-European projects.

Place, publisher, year, edition, pages
Taylor & Francis Group, 2023. Vol. 17, no 2, p. 125-158
Keywords [en]
Adolescent young carers;ethical issues; European project; participatory research methods;field research
National Category
Medical Ethics
Research subject
Health and Caring Sciences
Identifiers
URN: urn:nbn:se:lnu:diva-120638DOI: 10.1080/17496535.2023.2205654ISI: 000982904500001Scopus ID: 2-s2.0-85158112120OAI: oai:DiVA.org:lnu-120638DiVA, id: diva2:1756098
Available from: 2023-05-10 Created: 2023-05-10 Last updated: 2024-07-04Bibliographically approved

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Hanson, ElizabethBarbabella, FrancescoSvensson, MiriamMagnusson, Lennart

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Hanson, ElizabethLewis, FeylynBarbabella, FrancescoHoefman, RenskeCasu, GiuliaBoccaletti, LiciaLeu, AgnesBolko, IrenaSantini, SaraSvensson, MiriamBecker, SaulMagnusson, Lennart
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