| 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. |
- Brolin, Rosita, 1958-, et al.
(författare)
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Adolescent Young Carers Who Provide Care to Siblings
- 2024
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Ingår i: Healthcare. - : MDPI. - 2227-9032. ; 12:3
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Tidskriftsartikel (refereegranskat)abstract
- A child's disability, long-term illness, or mental ill-health is known to affect siblings' health, social life, school engagement, and quality of life. This article addresses a research gap by its focus on young sibling carers and the impact of providing care to a sibling. A cross-national survey study was conducted in 2018-2019 (Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK) to examine the incidence of adolescent sibling carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1444 of them provided care to family members with health-related conditions. Out of these, 286 were identified as Sibling Carers and 668 as Parent Carers, while 181 had both sibling(s) and parent(s) with health-related conditions, and thus were identified as Sibling-Parent Carers. Sibling Carers and Sibling-Parent Carers carried out higher levels of caring activities compared to Parent Carers. They reported both positive aspects of caring, such as increased maturity, and negative aspects, such as mental ill-health, impact on schooling and a lack of support. To reduce the negative aspects of a sibling carer role, it is important to recognise them and to implement early preventive measures and formal support.
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| 3. |
- Brolin, Rosita, 1958-, et al.
(författare)
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Adolescent Young Carers Who Provide Help and Support to Friends
- 2023
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Ingår i: Healthcare. - : MDPI. - 2227-9032. ; 11:21
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Tidskriftsartikel (refereegranskat)abstract
- Prior studies emphasize the value of friends’ support for children/adolescents who have a disability or suffer from mental ill-health or a long-term illness. However, few studies have explored how a caring role affects those young friend carers themselves. This paper addresses a gap in the research by focusing on this hitherto neglected group of young carers to explore the impact of providing care to friends. An online survey was employed for a cross-national study conducted in 2018–2019 in Sweden, Italy, Slovenia, the Netherlands, Switzerland, and the United Kingdom to examine the incidence of adolescent young friend carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15–17, and 1121 of them provided care to a friend with a health-related condition, most frequently mental ill-health. They carried out high levels of caring activities, and a quarter of them also provided care to a family member. They experienced both positive and negative aspects of caring. Nevertheless, in comparison with adolescents who provided care to family members, they reported more health problems, with a dominance of mental ill-health, and they received lower levels of support. Since adolescent friends play a valuable role for young people with health-related conditions, especially mental ill-health, it is important to find ways of optimizing their caring experiences in order that those adolescents who choose to care for a friend can do so without it having a negative impact on their own mental health, well-being, and life situation.
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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. |
- 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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| 9. |
- 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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| 10. |
- Lewis, Feylyn Mercedies, et al.
(författare)
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The first cross-national study of adolescent young carers aged 15–17 in six European countries
- 2023
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Ingår i: International Journal of Care and Caring. - : Policy Press. - 2397-8821 .- 2397-883X. ; 7:1, s. 6-32
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Tidskriftsartikel (refereegranskat)abstract
- For the first time, this article will provide a cross-national profile of adolescents who provide unpaid care to their ill or disabled family members in six European countries with varied levels of awareness, policy and service provision regarding adolescent young carers. Utilising an online survey, 2,099 adolescent young carers were identified in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the UK. This article focuses on the impact of unpaid care on their mental health, well-being, physical health and education. Their preferences for informal and formal support were also examined. These groundbreaking findings help promote a ‘rights’ approach to adolescent young carers, which can serve as a critical driver for supportive policy creation on both a country-specific and pan-European level.
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