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

Hanson, Elizabeth (author), Lewis, Feylyn Mercedies (author), Barbabella, Francesco (author), Hoefman, Renske (author), Casu, Giulia (author), Boccaletti, Licia (author), Leu, Agnes (author), Hlebec, Valentina (author), Bolko, Irena (author), Santini, Sara (author), Svensson, Miriam (author), Becker, Saul (author), Magnusson, Lennart (author)

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.

• Language: English
• Keywords: adolescent young carers, ethical issues, European project, participatory research methods, field research
• Work type: Article
• Typology: 1.01 - Original Scientific Article
• Organization: FDV - Faculty of Social Sciences
• Publication status: Published
• Publication version: Version of Record
• Year: 2023
• Number of pages: Str. 125-158
• Numbering: Vol. 17, no. 2
• PID: 20.500.12556/RUL-145682
• UDC: 17:303
• ISSN on article: 1749-6535
• DOI: 10.1080/17496535.2023.2205654
• COBISS.SI-ID: 151249411
• Publication date in RUL: 08.05.2023

Record is a part of a journal

• Title: Ethics & social welfare
• Publisher: Taylor & Francis
• ISSN: 1749-6535
• COBISS.SI-ID: 3166565

Licences

• License: CC BY-NC-ND 4.0, Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International
• Link: http://creativecommons.org/licenses/by-nc-nd/4.0/
• Description: The most restrictive Creative Commons license. This only allows people to download and share the work for no commercial gain and for no other purposes.

Secondary language

• Language: Slovenian
• Keywords: etika, raziskovanje, družboslovna metodologija, dolgotrajna oskrba, najstniki

Projects

• Funder: EC - European Commission
• Project number: 754702
• Name: Psychosocial Support for Promoting Mental Health and Well-being among Adolescent Young Carers in Europe
• Acronym: ME-WE