Background
Until the 1990s, the role that children and young people played in providing informal family care received virtually no academic or policy recognition. Since then, research into the area has substantially increased our understanding of these children and their lives and difficulties. Children who provide such care are generally referred to as «young carers» [
1], although different countries use different terms. For example, the term «young caregiver» is used in the United States [
2], and «children who are next of kin» is used in Norway and Sweden [
3]. Although a number of definitions of these exist, most have the following common features: young carers are young people under the age of eighteen who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult. The person receiving care is often a parent but can be a sibling, grandparent, or another relative with a disability or a chronic illness, mental health problem or condition requiring care, support, or supervision [
1]. It is important to note that the type of care provided by young carers extends beyond the basic household chores that many children and young people carry out. Research shows that young carers provide care in all areas where care is needed, including physical and emotional care (including intimate personal care), household management and taking care of siblings [
4‐
6]. The reasons for providing care are complex and often related to the absence of other informally available networks, the lack of suitable formal care arrangements, familial preferences as well the natural family bond to the person in need [
4‐
8].
More recently, Becker and Becker [
9] broadened the research by including older children and young people and defining a “young adult carer”, as a person aged between 18 and 24, who provides care or support to another family member free of charge. Research has shown that these young people also face substantial difficulties in education and in employment [
10‐
12]. Furthermore, according to international studies, young adult carers are often unemployed, or work part time in order to be able to carry on with their caring responsibilities. They may have no appropriate qualifications for employment because of the impact that their caring role has had on their education and training [
13].
Research has highlighted the negative outcomes that caring has on children, for example, restricted social and educational opportunities. Much of this work has originated in the United Kingdom (see [
14,
15]) and it has had an impact on policy and legal provision in that country, with specific legislation to protect young carers and a national network of hundreds of service programmes. Apart from a few other countries including Australia, Canada, New Zealand, Norway, Sweden, Germany, Austria, and France, most nations and governments have not engaged in identifying and supporting young carers, even though it is likely that between two and 4 % of all children (as a minimum estimate) take on caring roles within their families. This reflects a lack of awareness about children who care and the contributions that they make to informal family care, as well as a lack of engagement by academics and by policymakers.
By the end of 2011, Switzerland had a residential population of just under eight million people, with 2.1 million children, adolescents and young adults aged up to 24 years (1.6 million aged up to 19 years, 0.5 million aged 19 to 24 years). Therefore, if the findings from other countries can be extrapolated to Switzerland, there are at least 33,000 to 66,000 child and adolescent carers under 19; and an additional 22,000 to 26,000 young adult carers aged 19–24 living in Switzerland. These carers need to be identified so that they and their families receive proper support and the children and young people are do not (need to) provide excessive or inappropriate care-giving, or that which involve risky situations.
However, there is little awareness of children, adolescents and young adults under 24 involved in caring for family members in Switzerland. The numbers of these so called “young carers” and “young adult carers”, the sort and the extent of their tasks, as well as their impact are unknown. The needs and wishes of young people with a caring role and their families are also unexplored.
The international situation
Studies from England, Australia, USA, Canada, Africa, Germany, Austria and Scandinavian countries have all shown that there are children, adolescents and young adults who regularly look after a chronically ill family member; hence this is a global phenomenon. Estimates of the number of child, adolescent and young adult carers differ between countries. In Great Britain, around 2.1% of children under 18 years are carers [
9]); in Austria [
8] and Australia [
13] the figure is 3.6%; and in the US it is 3.2% [
16].
Sweden and Norway are in the process of trying to identify and «count» the numbers of young carers in their countries using a methodology of self-disclosure.
The kind of support children provide for their families ranges from household tasks (cleaning, grocery shopping, cooking), helping siblings (looking after them, doing homework together, putting them to bed, taking them to nursery or to school), to support regarding their illness (physical and emotional support and personal hygiene care) [
16,
17].
The amount of care carried out by children, adolescents and young adults is extensive; 14% of child and adolescent carers under 18 in Austria, for example, state that they are providing care for five to six hours per day [
8]; in Great Britain the figure is 9% [
9]. This shows the level of responsibility that these children have in their everyday life, many of whom started caring from an early age.
Discussion
The synthesis of these three work packages will make a major contribution to new knowledge and enable the research team to develop recommendations for evidence-based policy and practice to meet the needs of younger carers and their families in Switzerland. The aim is to enable practitioners to be better able to recognise and identify younger carers in whatever settings they may be; and to make policy and practice recommendations for interventions to promote the development, education, health, well-being and future employability of younger carers in Switzerland.
The situation of younger carers in Switzerland has not been researched before. The number of these younger carers is unknown, as is the extent and nature of their caring activities and the outcomes for their health, well-being, psycho-social development, education, transitions to adulthood and future employability and economic participation.
The needs of younger carers and their ill and disabled family members have not been systematically investigated. This will be the first study in Switzerland 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 be the first study to collect important data on the awareness, extent, type and impact of caring activities among children and young people in Switzerland, and to 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 among medical, social, health, educational, and other groups in Switzerland; (b) the proportion and number of young carers in the 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.
By publicising our method we hope that countries which as of yet have not conducted any studies into the lives and conditions of young carers and young adult carers will use the same instruments and protocols to carry out rigorous research to enable meaningful cross-national comparisons.