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

Abstract

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.

Pathways to Mental Well-Being in Young Carers: The Role of Benefit Finding, Coping, Helplessness, and Caring Tasks

“…In most countries, the topic of youth providing care has received modest attention in research, policy, and practice (Leu and Becker 2017 ). Accordingly, many young carers remain unrecognized as such and they receive little support (e.g., Nap et al 2020 ). The current study’s findings add to the scant body of theoretically driven basic research in the field of young carers research that is needed to advance the knowledge to inform policy and practice (Joseph et al 2020 ).…”

Well-Being and Perceived Stress of Adolescent Young Carers: A Cross-Sectional Comparative Study

“…Young carers hold rewarding but also highly demanding responsibilities (e.g., Nickels et al, 2018;Stamatopoulos, 2018). However, given the low awareness of youth's caring roles among professionals and the general population in most countries, many young carers remain unnoticed and lack support (Nap et al, 2020). Furthermore, a growing population of older adults, along with healthcare trends toward outpatient rather than inpatient treatments, and advances in medical technology will likely result in a rising number of family carers, including young carers (e.g., Perrig-Chiello et al, 2010;Stamatopoulos, 2015).…”

“…Moreover, interviews with young carers and their care recipients emphasized the importance that professionals help young carers in balancing education and caring (Frech et al, 2021). However, presently, many young carers in Switzerland, as in other countries, are not recognized and supported as such (Leu et al, 2020;Nap et al, 2020). Consequently, combining a student, peer, and a young carer role, often bears significant difficulties in youth's day-to-day lives.…”

Cross-national Analysis of Legislation, Policy and Service Frameworks for Adolescent Young Carers in Europe

“…A second question that was raised is whether or not specific legislation and policy are necessary to protect and support AYCs, or whether a better direction would be through existing non-specific legislation/policy. It is true, as other findings from the ME-WE project show, that whilst the level and type of support available for YCs differ (with most countries mainly offering support on a local level), within the UK, which does have specific legislation and policy, there are hundreds of interventions to support YCs (Nap et al 2020). However, arriving at a definitive answer to this is complex and many things need to be considered that are specific to individual countries, such as the effectiveness of current non-specific legislation/policy at recognising, identifying, protecting and supporting AYCs and how specific legislation/policy would fit with what already exists.…”