No abstract

Many children, adolescents, teenagers, and young adults have caring responsibilities for parents and family members. These young carers and young adult carers are present in every country. Their responsibilities include domestic chores as well as intimate personal care and other forms of helping which are generally seen as the responsibility of adult professionals. First, this article provides an overview and critical perspective on young carers research. Research suggests that 2-8% of children and young people are carers and that the caring role has an impact on their education, health, wellbeing, social opportunities and employment prospects. Various countries have responded differently with regards to policy: some have well developed services and recognition in law whilst others are only just beginning to recognise the problem. Second, we discuss the issues and challenges for research and propose a new agenda for the development of policy, research rigour, more theoretical sophistication, and a greater awareness of the need for interdisciplinary and multiagency working. Furthermore, we call for participatory and action led research that can provide greater insights into the lived experiences of young people, their needs and how these can be met.

An online survey of children in school grades 4–9 (mostly aged 10–15) was conducted in order to determine the prevalence of young carers in Switzerland using a 2‐stage stratified sampling approach. 4082 respondents were drawn from 230 schools. A total of 3991 respondents were included in the analysis and of these 307 (7.7%) were identified as young carers. The population estimate of prevalence was 7.9 per cent. This suggests that there are around 38 400 young carers in school grades 4–9 in Switzerland. Extrapolating to the 9–16 age group gives a figure of almost 51 500.

Although there is already general recognition of the fact that many relatives provide unpaid care for family members, there is still little awareness that children, adolescents and young adults under 25 also provide such care. Until recently, the situation of young carers and young adult carers, as those young persons are referred to in international research, has not been in the focus of professionals, research and the public in Switzerland. Between September 2015 and October 2016, 30 interviews in seven cantons were conducted with 16 young carers aged 10-17 and 14 young adult carers aged 18-25. The interviews were recorded, transcribed and analysed following a grounded theory approach. This paper now presents the first qualitative data on Swiss young carers and young adult carers. It explores their sociodemographic backgrounds, the nature and intensity of caring tasks they carry out, their pathways into caring as well as the role of communication with family members, extended family, professionals and peers. Our findings provide a first insight in the lives of young carers and young adult carers in Switzerland and illustrate, as well, the challenges they face.

While political and public interest in providing support for family carers is growing, so called young carers and young adult carers-young persons under the ages of 18 and 25 respectively-mostly remain unrecognised. Yet, this vulnerable group is in need of special attention and support from professionals in order to get along with the situation of an ill family member and the caring duties they perform. This paper presents the results from a focus group study on the level of awareness among professionals from healthcare, education and social services concerning the topic of caring children, adolescents and young adults; and on the practice tools they consider necessary and helpful in order to support young carers and young adult carers. Twenty-seven professionals from the German- and French-speaking parts of Switzerland participated in five focus groups. The focus groups were recorded and transcribed verbatim, and the transcripts were analysed using qualitative content analysis. Our findings show that the professionals have a low level of awareness of the issue of young carers and young adult carers and also highlight the professionals' willingness to engage with the subject. The results also show that professionals consider that practice tools (such as standardised questionnaires and check lists) could be important devices in providing support for young carers and young adult carers. These tools could be helpful in identifying this group, enabling them to identify themselves as such, and would ensure that they received appropriate support.

Findings from international research emphasis the need of these young people to be identified and recognised. Therefore, a nationwide quantitative study of professionals' awareness was conducted in the Swiss context. Data were collected from professionals working in education, healthcare and social services. The study examined professionals' familiarity with the terms used to describe young people with caring responsibilities; their ability to identify the population in their professional context; their perception of the relevance of the issue; their ability to support them; and their own training needs. Potential study participants were contacted via email. Data were collected using an online survey, which was open for 14 weeks during the period of September to December 2016. Survey data from 2,311 professionals, who reported being regularly in contact with young people with caring responsibilities in their occupational context, were included for analysis. Of all terms presented in the survey, young carer (YC) was the term most familiar to all professionals. Among healthcare and education sector, the percentage of professionals familiar with this term was higher than that among professionals from social services. Professionals from social services were the most likely to consider the issue relevant to their work, those from education were the least likely. Professionals who were familiar with the terms describing YC were more likely to consider the issue relevant to their work. Study results showed that more than half of the respondents had not identified young people with caring responsibilities, and that the ability of participants to identify YC was related to their occupational sector. The perceived ability to support YC was related to their reported ability to recognise them. In order to enable professionals to support YC, raising awareness, providing training for professionals and a national network of existing organisations should be well considered.

BackgroundIn Switzerland, the issue of young carers and young adult carers - young people under the age of 18 and 24 respectively, who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult - has not been researched before. The number of these younger carers is unknown, as is the extent and kind of their caring activities and the outcomes for their health, well-being, psycho-social development, education, transitions to adulthood, future employability and economic participation.MethodsThe project is comprised of three stages:A national Swiss-wide online survey to examine awareness of the issue of younger carers amongst professional populations in the education, health and social services sectors;An online survey of 4800 Swiss pupils in schools using standardised instruments to identify the proportion and characteristics of pupils who are carers; andSemi-structured interviews with 20 families comprising family members with care needs and younger carers, to consolidate and validate the other stages of the study; and to hear directly from care-dependent family members and younger carers about their experiences of the issues identified in the surveys and in previous published research.DiscussionThe needs of younger carers and their ill and disabled family members in Switzerland have not been systematically investigated. This will be the first study in the country to investigate these issues and to develop evidence-based recommendations for policy and practice, drawing also on international research.The present study therefore fills an important national and international research gap. It will collect important data on the awareness, extent, kind and impact of caring amongst children and young people in Switzerland, and cross-link these findings with robust evidence from other countries. The study will reveal (a) the extent of awareness of the issue of young carers amongst medical, social, health, educational, and other groups in Switzerland; (b) the proportion and number of young carers amongst a normative child population, and what these young carers ‘do’ in terms of their caring roles; and (c) direct accounts by families of their care-giving and receiving experiences.

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 an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an 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 difference in positive and negative caregiving outcomes and exposure factors between the two groups. Linear or logistic regression models were built, and multivariate analyses were repeated, including a fixed effect on the country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs of OCRs 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 measures and policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs from inappropriate responsibilities, undermining their mental health and well-being.