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

Citation

Nap, Henk Herman et al. (2021), The awareness, visibility and support for young carers across Europe: a Delphi study, Dryad, Dataset, https://doi.org/10.5061/dryad.18931zcxx

Abstract

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. 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. 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. 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.

Methods

Via telephone, online or physical interviews. Data was transcribed and summarized using a thematic analysis.

Usage Notes

The dataset includes the ME-WE interview guide of round 1 in English, The interview guide that was used during the first round of the Delphi study.

The dataset also includes the ME-WE interview guide of round 2 used in the UK, The summary of the results from the first round; 1. General results first round (per topic), 2. Country specific results, and 3. In-depth results from the country where the interview took place (this case UK). After every section, questions where added for the experts.

Funding

Horizon 2020 Framework Programme, Award: Grant Agreement No 754702