| 1. |
- Papa, Roberta, et al.
(författare)
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Review and Selection of Online Resources for Carers of Frail Adults or Older People in Five European Countries : Mixed-Methods Study
- 2020
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Ingår i: JMIR mhealth and uhealth. - : JMIR Publications, Inc. - 2291-5222. ; 8:6
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Forskningsöversikt (refereegranskat)abstract
- Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage. Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden). Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions. Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare. Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.
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| 2. |
- 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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| 3. |
- 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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| 4. |
- 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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| 5. |
- 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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| 6. |
- 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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| 7. |
- 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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| 8. |
- 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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| 9. |
- 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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| 10. |
- Nap, Henk Herman, et al.
(författare)
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The awareness, visibility and support for young carers across Europe : a Delphi study
- 2020
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Ingår i: BMC Health Services Research. - : BioMed Central. - 1472-6963. ; 20:1, s. 1-16
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundAcross Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15-17years old.MethodsA two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions to support YCs, and (iii) future strategies to support YCs.ResultsExperts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remains challenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care.ConclusionsIn most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs.
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| 11. |
- Santini, Sara, et al.
(författare)
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Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents : Results froman Online Survey in Six European Countries and Implications for Future Research, Policy and Practice
- 2020
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 17:18, s. 1-16
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Tidskriftsartikel (refereegranskat)abstract
- Although up to 8% of European youngsters carry out high-intensity care for a family member,adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain anunder-researched group. This study aimed at addressing the current knowledge gap by carrying outan online survey in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom.The analysis included a final sample of 817 AYCs aged 15–17 years old. AYCs of grandparents (GrPs)were compared to AYCs of other care recipients (OCRs), in order to identify any dierence in positiveand negative caregiving outcomes and exposure factors between the two groups. Linear or logisticregression models were built, and multivariate analyses were repeated, including a fixed eect onthe country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs ofOCRs across all six countries. Being female or non-binary, and having a migration background,were associated with more negative outcomes, regardless of the relationship with the care recipient.Further research on intergenerational caregiving outcomes is recommended for shaping measuresand policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs frominappropriate responsibilities, undermining their mental health and well-being.
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