Ethical considerations when conducting pan-European research with and for adolescent young carers

Hanson, Elizabeth, Lewis, Feylyn, Barbabella, Francesco, Hoefman, Renske, Casu, Giulia, Boccaletti, Licia, Leu, Agnes, Hlebec, Valentina, Bolko, Irena, Santini, Sara, Svensson, Miriam, Becker, Saul ORCID: https://orcid.org/0000-0002-7643-5903 and Magnusson, Lennart (2023) Ethical considerations when conducting pan-European research with and for adolescent young carers. Ethics and Social Welfare, 17 (2). pp. 125-158. ISSN 1749-6535

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Abstract

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.