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.
Although prior research has shown that young carers may perceive benefits from their challenging situation, it is unclear how and when benefit finding leads to better mental health. This study ...examines pathways through which benefit finding may influence mental well-being. Self-reported data were obtained from 601 adolescents aged 15–21 (
M
age
= 17.87, 71.9% female) who provided care for a close person with physical or mental health problems. Benefit finding was associated with better mental well-being directly as well as indirectly via better coping and lower helplessness. These findings were similar across young carers with different caring task profiles, except for a few differences regarding social/emotional and instrumental care. The study suggests that benefit finding could promote coping skills and mental well-being in adolescent young carers with implications for the design of future research on interventions with young carers.
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.
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.
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.
The reality for many families where there is chronic illness, mental health problems, disability, alcohol or substance misuse is that children under the age of 18 are involved in caring. Many of ...these children - known as 'young carers' - will be providing regular and significant care, either episodically or over many years, often 'hidden' to health, social care and other welfare professionals and services. These children have most often been invisible in social policy and professional practice. What are the reasons why some countries recognize young carers as a priority for social policy while others (most) do not? What are the key factors that influence a country's awareness and responses to these children? This article provides an original classification and analysis of country-level responses to young carers, drawing on published research, grey literature, policy documents and the authors' extensive engagement in policy and practice networks for young carers and their families in a wide range of countries. The analysis identifies two of the key factors that influence the extent and nature of these policy responses, focusing on the importance of a reliable in-country research base and the contribution of influential national NGOs and their networks.
In 2012, Switzerland introduced the diagnosis-related group hospital payment system. Fearing that vulnerable patients may be discharged early, Acute and Transitional Care (ATC) was introduced to ...address the nursing care of patients who no longer needed an acute hospital stay. ATC is more costly for patients when compared to other discharge options like rehabilitation while providing less rehabilitative services. This study investigates factors associated with the place of discharge for patients in need of care.
Data was collected from 660 medical records of inpatients 50 years and older of the municipal hospital Triemli in Zurich, Switzerland. We used stepwise logistic regression to identify factors associated with their discharge into ATC or rehabilitation.
Older patients with higher Delirium Observation Scale (DOS), lack of supplementary health insurance, resuscitation order and a lower social network were more likely to be discharged into ATC than rehabilitation.
The association of supplementary health insurance and social network with discharge into ATC or rehabilitation is problematic because patients that are already vulnerable from a financial and social perspective are potentially discharged into a more costly and less rehabilitative post-acute care facility.
To address Young Carers' (YCs) needs for space and opportunities to reflect and exchange, a guided peer-support programme, the "Get-togethers", was developed in collaboration with YC in Switzerland ...in 2018. In order to evaluate if the Get-togethers were able to meet their originally set goals of (1) strengthening support among YCs, (2) promoting their life skills, (3) strengthening their social network and (4) promoting the inclusion and participation of YCs, participants of the Get-togethers were asked to complete a short questionnaire about their participation in and experiences with the Get-togethers. We also analysed the standard documentation of 17 Get-togethers held between May 2021 and September 2023. Overall, the Get-togethers were rated positively in almost all areas of the survey and the documentation, indicating that the four originally set objectives of the Get-togethers were (at least largely) achieved. The Get-togethers covered a large part of the needs of YCs, such as emotional support and opportunities to relax and exchange with people in a similar situation, yet they largely failed to reach minor YCs and male YCs. Further support programmes should be developed to address the different needs of different groups of YCs.
Prior studies emphasize the value of friends’ support for children/adolescents who have a disability or suffer from mental ill-health or a long-term illness. However, few studies have explored how a ...caring role affects those young friend carers themselves. This paper addresses a gap in the research by focusing on this hitherto neglected group of young carers to explore the impact of providing care to friends. An online survey was employed for a cross-national study conducted in 2018–2019 in Sweden, Italy, Slovenia, the Netherlands, Switzerland, and the United Kingdom to examine the incidence of adolescent young friend carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15–17, and 1121 of them provided care to a friend with a health-related condition, most frequently mental ill-health. They carried out high levels of caring activities, and a quarter of them also provided care to a family member. They experienced both positive and negative aspects of caring. Nevertheless, in comparison with adolescents who provided care to family members, they reported more health problems, with a dominance of mental ill-health, and they received lower levels of support. Since adolescent friends play a valuable role for young people with health-related conditions, especially mental ill-health, it is important to find ways of optimizing their caring experiences in order that those adolescents who choose to care for a friend can do so without it having a negative impact on their own mental health, well-being, and life situation.
A child's disability, long-term illness, or mental ill-health is known to affect siblings' health, social life, school engagement, and quality of life. This article addresses a research gap by its ...focus on young sibling carers and the impact of providing care to a sibling. A cross-national survey study was conducted in 2018-2019 (Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK) to examine the incidence of adolescent sibling carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1444 of them provided care to family members with health-related conditions. Out of these, 286 were identified as Sibling Carers and 668 as Parent Carers, while 181 had both sibling(s) and parent(s) with health-related conditions, and thus were identified as Sibling-Parent Carers. Sibling Carers and Sibling-Parent Carers carried out higher levels of caring activities compared to Parent Carers. They reported both positive aspects of caring, such as increased maturity, and negative aspects, such as mental ill-health, impact on schooling and a lack of support. To reduce the negative aspects of a sibling carer role, it is important to recognise them and to implement early preventive measures and formal support.
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