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The awareness, visibility and support for young carers across Europe: a Delphi study

BACKGROUND: Across 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...

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Autores principales: Nap, Henk Herman, Hoefman, Renske, de Jong, Nynke, Lovink, Lieke, Glimmerveen, Ludo, Lewis, Feylyn, Santini, Sara, D’Amen, Barbara, Socci, Marco, Boccaletti, Licia, Casu, Giulia, Manattini, Alessandra, Brolin, Rosita, Sirk, Karina, Hlebec, Valentina, Rakar, Tatjana, Hudobivnik, Tjasa, Leu, Agnes, Berger, Fabian, Magnusson, Lennart, Hanson, Elizabeth
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7540437/
https://www.ncbi.nlm.nih.gov/pubmed/33028311
http://dx.doi.org/10.1186/s12913-020-05780-8
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author Nap, Henk Herman
Hoefman, Renske
de Jong, Nynke
Lovink, Lieke
Glimmerveen, Ludo
Lewis, Feylyn
Santini, Sara
D’Amen, Barbara
Socci, Marco
Boccaletti, Licia
Casu, Giulia
Manattini, Alessandra
Brolin, Rosita
Sirk, Karina
Hlebec, Valentina
Rakar, Tatjana
Hudobivnik, Tjasa
Leu, Agnes
Berger, Fabian
Magnusson, Lennart
Hanson, Elizabeth
author_facet Nap, Henk Herman
Hoefman, Renske
de Jong, Nynke
Lovink, Lieke
Glimmerveen, Ludo
Lewis, Feylyn
Santini, Sara
D’Amen, Barbara
Socci, Marco
Boccaletti, Licia
Casu, Giulia
Manattini, Alessandra
Brolin, Rosita
Sirk, Karina
Hlebec, Valentina
Rakar, Tatjana
Hudobivnik, Tjasa
Leu, Agnes
Berger, Fabian
Magnusson, Lennart
Hanson, Elizabeth
author_sort Nap, Henk Herman
collection PubMed
description BACKGROUND: Across 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 15–17 years old. METHODS: A 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. RESULTS: Experts 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. CONCLUSIONS: In 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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spelling pubmed-75404372020-10-08 The awareness, visibility and support for young carers across Europe: a Delphi study Nap, Henk Herman Hoefman, Renske de Jong, Nynke Lovink, Lieke Glimmerveen, Ludo Lewis, Feylyn Santini, Sara D’Amen, Barbara Socci, Marco Boccaletti, Licia Casu, Giulia Manattini, Alessandra Brolin, Rosita Sirk, Karina Hlebec, Valentina Rakar, Tatjana Hudobivnik, Tjasa Leu, Agnes Berger, Fabian Magnusson, Lennart Hanson, Elizabeth BMC Health Serv Res Research Article BACKGROUND: Across 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 15–17 years old. METHODS: A 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. RESULTS: Experts 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. CONCLUSIONS: In 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. BioMed Central 2020-10-07 /pmc/articles/PMC7540437/ /pubmed/33028311 http://dx.doi.org/10.1186/s12913-020-05780-8 Text en © The Author(s) 2020 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research Article
Nap, Henk Herman
Hoefman, Renske
de Jong, Nynke
Lovink, Lieke
Glimmerveen, Ludo
Lewis, Feylyn
Santini, Sara
D’Amen, Barbara
Socci, Marco
Boccaletti, Licia
Casu, Giulia
Manattini, Alessandra
Brolin, Rosita
Sirk, Karina
Hlebec, Valentina
Rakar, Tatjana
Hudobivnik, Tjasa
Leu, Agnes
Berger, Fabian
Magnusson, Lennart
Hanson, Elizabeth
The awareness, visibility and support for young carers across Europe: a Delphi study
title The awareness, visibility and support for young carers across Europe: a Delphi study
title_full The awareness, visibility and support for young carers across Europe: a Delphi study
title_fullStr The awareness, visibility and support for young carers across Europe: a Delphi study
title_full_unstemmed The awareness, visibility and support for young carers across Europe: a Delphi study
title_short The awareness, visibility and support for young carers across Europe: a Delphi study
title_sort awareness, visibility and support for young carers across europe: a delphi study
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7540437/
https://www.ncbi.nlm.nih.gov/pubmed/33028311
http://dx.doi.org/10.1186/s12913-020-05780-8
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