Young carers

Feasibility of a multidisciplinary caregiving training protocol for young caregivers in families with ALS. Objectives: To assess the feasibility of a multidisciplinary young caregiver group training protocol for children and youth who provide care to a family member with ALS. Method: Peer group experiential young caregiver model based on theories of self-management and self-efficacy. Training conducted by a multidisciplinary team of therapists in ALS (PT, OT, Speech and social work), as well as assistive device vendors.

Rationale Previous studies have shown that children may take on higher extents of caring activities if their parents are affected by severe illness or disability, especially when their parents lack access to formal and informal care. Aims and objectives This study examined the extent and nature of caring activities done by patients’ children; differences in caring activities between different types of parental illness; factors associated with caring activities. Design An explorative cross‐sectional multicentre study.

Textile-based crafts were used to engage young carers (under 18s providing care for another person) and accompanying adults in learning about underlying chemistry concepts, in an economically deprived area of northwest England; the region of the United Kingdom with the highest number of young carers. This science-crafts collaboration was supported by the Royal Society of Chemistry Outreach Fund and a British Science Week Community Grant.

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.

Children and adolescents with caring responsibilities are an uncontested reality in our society. Most are hidden from public view, and they perform a broad range of caring activities for chronically ill or disabled family members. The research literature has accumulated a comprehensive body of knowledge about young carers’ personal needs. However, knowledge and understanding are limited regarding the needs of young carers’ families. This knowledge can contribute to preventing children and adolescents from assuming inappropriate caring roles.

It is more than 25 years since the critical dialogue on young carers was played out in the pages of this journal (see Morris and Keith, 1995; Aldridge and Becker, 1996). Since that time, research evidence has given us a clearer picture of the extent of young caring in the UK and its consequences for children and families, including two new national studies that focus on the prevalence and impact of young caring in England.

In 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.

Methods

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.

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.