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. (shrink)

Infertility constitutes an essential source of stress in the individual and couple’s life. The Infertility-Related Stress Scale is of clinical interest for exploring infertility-related stress affecting the intrapersonal and interpersonal domains of infertile individuals’ lives. In the present study, the IRSS was translated into Brazilian–Portuguese, and its factor structure, reliability, and relations to sociodemographic and infertility-related characteristics and depression were examined. A sample of 553 Brazilian infertile individuals completed the Brazilian–Portuguese IRSS, and a subsample of 222 participants also completed the (...) BDI-II. A sample of 526 Italian infertile individuals was used to test for the IRSS measurement invariance across Brazil and Italy. Results of exploratory structural equation modeling indicated that a bifactor solution best represented the structure underlying the IRSS-BP. Both the general and the two specific intrapersonal and interpersonal IRSS-BP factors showed satisfactory levels of composite reliability. The bifactor ESEM solution replicated well across countries. As evidence of relations to other variables, female gender, a longer duration of infertility, and higher depression were associated with higher scores in global and domain-specific infertility-related stress. The findings offer initial evidence of validity and reliability of the IRSS-BP, which could be used by fertility clinic staff to rapidly identify patients who need support to deal with the stressful impact of infertility in the intrapersonal and interpersonal life domains, as recommended by international guidelines for routine psychosocial care in infertility settings. (shrink)