| 1. |
- Barbabella, Francesco, Dr. 1984-, et al.
(författare)
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Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries : Lessons Learned from the ME-WE Project
- 2023
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 20:6
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Tidskriftsartikel (refereegranskat)abstract
- Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15–17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020–2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.
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| 2. |
- Casu, Giulia, et al.
(författare)
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Promoting mental health and well‐being among adolescent young carers in Europe : a randomized controlled trial protocol
- 2021
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 18:4, s. 1-23
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Tidskriftsartikel (refereegranskat)abstract
- It is estimated that 4–8% of youth in Europe carry out substantial care for a familymember or significant other. To prevent adverse psychosocial outcomes in young carers (YCs),primary prevention resilience building interventions have been recommended. We describe thestudy protocol of an international randomized controlled trial (RCT) of an innovative group interventiondesigned to promote the mental health and well‐being of adolescent YCs (AYCs) aged15–17. The RCT will be conducted in six European countries in the context of the Horizon 2020European funded research and innovation project “Psychosocial support for promoting mentalhealth and well‐being among adolescent young caregivers in Europe” (“ME‐WE”). The ME‐WEintervention is based on Hayes and Ciarrochi’s psychoeducational model for adolescents and willconsist of seven 2‐h sessions in a group format, aimed to help AYCs build psychological flexibilityand live according to their values. The control group will be a waitlist. Primary and secondaryoutcomes and control variables will be measured at baseline (T0), post‐intervention (T1) and 3months follow‐up (T2). The COVID‐19 pandemic has made amendments necessary to the originalstudy protocol methodology, which we describe in detail. This study will contribute to building anevidence‐based manualized program that educators and health and social care professionals canuse to support AYCs in their transition to adulthood. From a research perspective, the outcomes ofthis study will contribute to evidence‐based practices in primary prevention of psychosocial difficultiesin AYCs and will gather novel knowledge on the effectiveness of Hayes and Ciarrochi’smodel for use with middle adolescents with caring responsibilities. The trial has been preregistered (registration number: NCT04114864).
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| 3. |
- D’Amen, Barbara, et al.
(författare)
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Italian Adolescent Young Caregivers of Grandparents : Difficulties Experienced and Support Needed in Intergenerational Caregiving—Qualitative Findings from a European Union Funded Project
- 2022
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- The article aims to describe the experiences of 87 Italian adolescent young caregivers (AYCs) of grandparents (GrPs), with reference to the caregiving stress appraisal model (CSA) that provides a theoretical lens to explore the difficulties encountered and support needed in their caring role. Qualitative data were drawn from an online survey conducted within an EU Horizon 2020 funded project. An inductive thematic analysis was carried out, and the findings were critically interpreted within the conceptual framework of the CSA model. The analysis highlighted three categories of difficulties: material, communication and emotional/psychological. The most common material difficulty was the physical strain associated with moving “uncooperative” disabled older adults. The types of support needed concerned both emotional and material support. The study provides a deeper understanding of the under-studied experiences of AYCs of GrPs. Based on these findings, policies and support measures targeted at AYCs of GrPs should include early needs detection, emotional support and training on intergenerational caring in order to mitigate the stress drivers. Moreover, the study advances the conceptualisation of the CSA model by considering the above-mentioned aspects related to intergenerational caregiving
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| 4. |
- Guggiari, Elena, et al.
(författare)
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Visibility as a Key Dimension to Better Health-Related Quality of Life and Mental Health : Results of the European Union Funded “ME-WE” Online Survey Study on Adolescent Young Carers in Switzerland
- 2023
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 20:5
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Tidskriftsartikel (refereegranskat)abstract
- Abstract: This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15–17 in Switzerland, based on data collected within the Horizon 2020 project ‘Psychosocial support for promoting mental health and well-being among AYCs in Europe’ (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support.
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| 5. |
- Hanson, Elizabeth, 1961-, et al.
(författare)
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Ethical Considerations When Conducting Pan-European Research with and for Adolescent Young Carers
- 2023
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Ingår i: Ethics and social welfare. - : Taylor & Francis Group. - 1749-6535 .- 1749-6543. ; 17:2, s. 125-158
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Tidskriftsartikel (refereegranskat)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.
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| 6. |
- Hanson, Elizabeth, 1961-, et al.
(författare)
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Research and Innovation for and with Adolescent Young Carers to Influence Policy and Practice—The European Union Funded “ME-WE” Project
- 2022
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:16
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Tidskriftsartikel (refereegranskat)abstract
- Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15–17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs’ mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs’ conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs.
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| 7. |
- Herman Nap, Henk, et al.
(författare)
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D3.1 Consolidated strategy and theory report : ME-WE project deliverable
- 2018
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- This deliverable presents the results from three activities to provide an in-depth systematic overview of successful strategies to improve Young Carers (YCs’) mental health and wellbeing. The results form a base for a consolidated strategy and theory for the ME-WE intervention and app to be further developed in WP4. A Delphi study gathered insights into the visibility, awareness, interventions and future needs of YCs in six European countries and on an international level. In addition, a systematic literature review, a general literature review, and social media analyses were carried out. Following these tasks, a rating, ranking and consolidation task was performed to iteratively build a dynamic ranked high impact list with national and international strategies and programmes that can serve as exemplars for the ME-WE intervention.
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| 8. |
- Johansson, Pauline, 1968-, et al.
(författare)
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Innovative School Education Methodologies and Tools for Guaranteeing Social Inclusion of Young Carers (EDY-CARE-project)
- 2021
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Ingår i: Presented at the 3rd International Young Carers conference, Online, May 3-6, 2021, 2021.
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Konferensbidrag (refereegranskat)abstract
- A considerable proportion of young people across Europe carry out a critical role in caring for their ill and/or disabled family members[1]. Being a Young Carer (YC) is recognised as a risk factor for social exclusion, higher absenteeism and drop-out rates from education, low employability, social stigma and bullying[2]. Teachers and school staff are usually not aware of the frequency of YCs and are not always able to identify YCs in their class. Therefore, the main goal of this EU Erasmus+ programme co-funded project was to empower teachers and other school staff in upper secondary education (ISCED-3 level) to recognise adolescent YCs (16-19 years old) in classes and maximise their learning opportunities. The Eurocarers consortium consisted of researcher and carer organization members in the partner countries of Sweden (coordinator), Slovenia, Italy and Portugal together with Eurocarers secretariat.The specific objectives were to develop:an assessment tool to identify YCs;educational strategies, didactical approaches and organisational adjustments to support YCs in their scholastic career;a handbook on how to work at best with YCs;a massive open online course (MOOC) about YCs, their needs and preferences.The achieved project outcomes, consisting of the above tools and strategies, can help to raise awareness of YCs’ needs, empower school staff to recognise and keep YCs involved in school and lead to a new attitude of YCs, which in turn can influence other stakeholders and organisations. Further, the concrete project outputs can help lead to new opportunities for peer recognition and awareness of YCs among school pupils themselves, to help make YCs more comfortable at school, satisfied with education, avoid drop outs, increase their educational and social environment and attempt to combat YCs’ social exclusion, loneliness, social stigma and any unmet educational and support needs. All materials are available in English, Swedish, Italian, and Portuguese[3].[1] Leu, A., Frech, M., Wepf, H., Sempik, J., Joseph, S., Helbling, L., & Jung, C. (2019). Counting young carers in Switzerland–a study of prevalence. Children & Society, 33(1), 53-67.[2] Becker, S., & Leu, A. (2014). Young Carers. In. Oxford Bibliographies in Childhood Studies. Heather Montgomery (Hrsg): Oxford University Press.[3] All materials and results are available at the EDY-CARE project web page: https://eurocarers.org/current-projects/edycare/
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| 9. |
- Leu, Agnes, et al.
(författare)
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Cross-national Analysis of Legislation, Policy and Service Frameworks for Adolescent Young Carers in Europe
- 2022
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Ingår i: Journal of Youth Studies. - : Taylor & Francis Group. - 1367-6261 .- 1469-9680. ; 25:9, s. 1215-1235
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Tidskriftsartikel (refereegranskat)abstract
- Despite some national examinations of policy responses for young carers (YCs), this study provides a first comprehensive cross-national comparison of the different legislation, policy and service frameworks that exist to protect and support adolescent young carers (AYCs) in six European countries (Italy, Netherlands, Slovenia, Sweden, Switzerland and United Kingdom) and how these are enacted. Until now, research has focused on estimating numbers of AYCs and the impact of caring tasks. A preliminary examination of policy responses to YCs was followed by expert interviews. Case study analysis of 25 interviews and a cross-national synthesis were undertaken before incorporating feedback from former YCs. Different responses to YCs were found, ranging from protection and support in policy and legislation and a definition for YCs, to a total lack of recognition and support. Findings highlight the potential to extend existing legislation, policy and service frameworks to include AYCs, and the importance of recognising and raising awareness of YCs. Awareness should be raised at all levels of society for example with professionals in health, social and education sectors and the general public. A definition for YCs is needed, so AYCs can self-identify and AYCs should be recognised as an important target group for policy makers.
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| 10. |
- Leu, Agnes, et al.
(författare)
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D2.1 Final report on case study analysis of policy, legal and service frameworks in six countries : ME-WE project deliverable
- 2018
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- This report provides a first comprehensive transnational comparison of the different legislation, policy and service frameworks that exist to protect and support adolescent young carers (AYCs) in six European countries (Italy, Netherlands, Slovenia, Sweden, Switzerland and United Kingdom) and how these work in practice. Until now, research has primarily focused on estimating the numbers of AYCs and the impact that their caring tasks have on them. Work Package 2 (WP2: National policy, legal and service frameworks) is part of the overall project “Psychosocial support for promoting mental health and wellbeing among adolescent young carers in Europe” (ME-WE), funded by the European Union (Horizon 2020).
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