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

BMC Health Services Research

Licia Boccaletti¹  Alessandra Manattini¹  Giulia Casu²  Fabian Berger³  Agnes Leu⁴  Lennart Magnusson⁵  Rosita Brolin⁵  Elizabeth Hanson⁵  Valentina Hlebec⁶  Karina Sirk⁶  Tatjana Rakar⁶  Tjasa Hudobivnik⁶  Barbara D’Amen⁷  Sara Santini⁷  Marco Socci⁷  Renske Hoefman⁸  Feylyn Lewis⁹  Nynke de Jong^1,10  Lieke Lovink^1,10  Henk Herman Nap^1,10  Ludo Glimmerveen^1,10 

[1] Anziani e non solo soc. coop, Sede amministrativa e legale Via Lenin, 55, 41012, Carpi, MO, Italy;Anziani e non solo soc. coop, Sede amministrativa e legale Via Lenin, 55, 41012, Carpi, MO, Italy;Dipartimento di Psicologia, University of Bologna, Università di Bologna, viale Berti Pichat 5, Bologna, Italy;Careum School of Health, Kalaidos University of Applied Sciences, Zürich, Switzerland;Careum School of Health, Kalaidos University of Applied Sciences, Zürich, Switzerland;Institute for Biomedical Ethics, University of Basel, Basel, Switzerland;Department of Health and Caring Sciences, Linnaeus University, 39182, Kalmar, Sweden;Faculty of Social Sciences, Kardeljeva pl. 5, 1000 Ljubljana, Faculty of Health Sciences, University of Ljubljana, Zdravstvena pot. 5, 1000, Ljubljana, Slovenia;IRCCS INRCA, Via Santa Margherita, 5, 60124, Ancona, Italy;The Netherlands institute for Social Research (SCP), Bezuidenhoutseweg 30, 2594 AV, Den Haag, the Netherlands;University of Sussex, Sussex House, Falmer, BN1 9RH, Brighton, United Kingdom;Vilans – The national Centre of Expertise for Long-term Care in the Netherlands, Churchilllaan 11, 3527 GV, Utrecht, the Netherlands;

关键词: Informal care;    Family care;    Delphi study;    Adolescent young carers;    Young carers;    Support services;    European research;    Cross-national research;   

DOI  :  10.1186/s12913-020-05780-8

来源: Springer

【 摘 要 】

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 15–17 years 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.

【 授权许可】

CC BY