Young carers: review of research and data

Executive Summary

Review of data and evidence on young carers

Young carers are those who provide help or support to family members, friends, neighbours or others because of either long term physical or mental ill health, disability or problems related to old age. This paper discusses the data and evidence on young carers and young adult carers. In this report, the term 'young adult carers' refers to people aged 16-24 years, and the term 'young carers' to people aged 4-15 years. This is primarily due to the way in which the statistical data is organised and it is recognised that young carers are usually considered as those aged under 18 ^[1] .

The purpose of this paper is to:

• Investigate the profile, characteristics and impacts of caring for young carers and young adult carers
• Provide an increased understanding of the existing evidence on the prevalence and impacts of young caring and the available support, in advance of the implementation of the Carers (Scotland) Act which is due to be commenced on 1 April 2018

It combines an analysis of data on young carers from Scotland's Census 2011 with the findings of a review of the evidence on young carers focused on the period 2005-2015.

Who are young carers in Scotland?

The most accurate estimate (from the Scottish Health Survey) suggests that around 7% of young people in Scotland (93, 000) have caring responsibilities. It is likely that this is an under estimate ^[2] as not all young carers will identify as a young carer, either because they do not see themselves in that role or because they are concerned about revealing their caring responsibilities.

Young carers are a diverse group of all ages and backgrounds and live in all areas of Scotland. However, the Census shows that caring is more common in some groups of young people than others. The data suggests that as children become older more of them regularly provide a few hours of caring per week. The majority of young carers and young adult carers are female. A higher proportion of young people in the most deprived areas report providing care and they provide the most hours of care. Young carers in rural areas may face additional challenges due to the more dispersed nature of services and facilities.

Young carers' health and well-being

The data shows that being a young carer tends to be associated with poorer health and well-being. This is true for self-reported health, long term conditions or disabilities and mental health conditions. This is likely to have implications for other areas of young carers' lives, such as education and employment.

Although those providing more hours of care appear to have worse self-reported health, it is not possible to say the extent to which this is directly related to caring responsibilities. Other factors such as deprivation, gender and support networks are also likely to have an impact.

Research suggests that young carers may face challenges in participating in social or leisure activities and may feel isolated as a result. However, it is also important to note that young carers can be positive about their caring role and feel that it brings benefits.

Young carers' education and employment

Caring may adversely affect a young person's education but there is inconsistent evidence on the extent of the impact. The issues most commonly found to affect a young carer's education were school attendance, tiredness and bullying. Schools therefore have an important role in helping to support young carers. Young carers can face challenges in balancing their caring responsibilities and education and employment requirements and opportunities.

Caring responsibilities may influence education and employment choices and flexibility is an important factor in enabling young carers to balance different commitments. The negative impact of combining caring and education may have potentially significant enduring consequences for workforce participation, and geographic and social mobility, with the risk of compounding deprivation and inequalities.

The number of students in further and higher education who say that they are carers declines with each year of age. Caring roles may impact on the choice of university and on the choice of course and research has also highlighted young adult carers' financial concerns in education.

Support for young carers

The evidence is stronger on the challenges facing young carers than it is on effective support and interventions. However, it does highlight the importance of recognition and an assessment of need and that effective support can be either or both for the young carer or for the cared person.

Evidence suggests that children and young people engaged in young carer support projects feel recognised, supported and valued. Although schools are also seen as a potentially valuable avenue for support the evidence on effective support and interventions in schools is underdeveloped. Older young carers have specific needs as they transition into adulthood but there may be limited services available to support them.

Conclusions

Research on young carers continues to be a developing area. This paper summarises a mixed range of survey data (both general population and specifically of young carers) and a range of small-scale qualitative studies, from which it is difficult to generalise. Research and analysis of Census data identify a number of important challenges facing young carers and young adult carers. There is considerable evidence that young carers often experience poorer mental and physical health than peers without caring responsibilities. This is likely to have implications for other aspects of their life such as education and employment. It may also be that young carers need support to ensure that their own health needs are not overlooked. Research suggests that young carers may face challenges in participating in social or leisure activities and may feel isolated as a result.

Young carers can face challenges in balancing their caring responsibilities with education and employment requirements and opportunities. This has potentially profound long-term effects on socio-economic and health outcomes and on inequality. It is possible that young carers may be more likely to experience problems at school and have lower attainment although this will not apply to all young carers. Schools therefore have an important role in being aware of and helping to support young carers.

Young carers can be positive about their caring role and feel that it brings benefits. However, given the potential impact of caring on young people, access to an assessment of their needs and support is critically important. Improving access to assessments and support requires awareness of young caring amongst professionals and service providers, and ensuring that assessments and support are provided in a way that is sensitive to young people's concerns about being identified as a carer or about requiring help.

The evidence is limited on the effectiveness of different interventions to support young people but does identify some of the needs that support can help to address. As caring can be associated with poorer mental health (particularly for female young carers) it is important they are able to access services and supported to be able to participate in non-caring activities to reduce the risk of isolation. Given the potential impacts on young carers' education, support in schools is also crucial. Although existing evidence is limited (and this is an important gap) it does suggest a range of potential ways to support young carers including through the provision of support to the cared-for person and by helping young people participate in other activities (for example by providing transport) in order to balance caring with other aspects of their lives. Whatever form of support is provided it is important that it is based on the needs of the young person and that young carers' voices are heard.

The findings from this review sit within a context of on-going policy and service development with the Carers Scotland Act to be commenced in April 2018. As policy and practice continue to develop it will be important to understand the factors that enable young carers to seek and access support and to strengthen the evidence base on effective intervention and support options for young carers.