Young carers: review of research and data

1. Introduction

This is a report on the profile of young carers and young adult carers in Scotland. 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 ^[3] . The report provides insight into who young carers are, and the amount and type of care they provide. It considers their health and well-being and the impact of caring on them and their education and employment. Finally, the evidence on young carers' needs and the support offered to them is discussed.

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 is recognised that young carers and young adult carers can have differing experiences and needs (Hamilton & Adamson, 2013, p. 102) from older 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. The term 'young carers and young adult carers' is used for children and young people aged 4-24 years who are carers. Indeed, the analysis revealed many similarities between the two groups and where this is the case the findings are reported for young carers and young adult carers.

The literature used in this report covers a broad timeframe in order to ensure comprehensive coverage of the existing evidence which includes surveys, research reports and policy documents. The review was undertaken in 2015 and searched for publications in the previous 10 years. While the search covered international evidence, the paper is focused primarily on UK based evidence. The literature search approach is described in more detail in the Annex. The more recent research, along with the Census analysis, suggests that many of the issues identified in the earlier literature remain valid. However, it is recognised that policy and practice continue to evolve in order to address the challenges facing young carers and the evidence discussed here may not include all recent developments.

1. 1 Legislative and Policy Context

The Carers (Scotland) Act (2016), to be commenced on 1 April 2018, is a central component of Scottish Government carers' policy. It aims to "ensure better and more consistent support for carers and young carers so that they can continue to care, if they so wish, in better health and to have a life alongside caring." (Scottish Parliament, 2015, p. 11).

The Act builds on existing legislation, strategies and guidance and recognises the work done by a range of national and local organisations to promote the important contribution made by carers in Scotland and to ensure that more is done to support carers. This has included the Care 21 Report (Scottish Executive, 2006), the Scottish Government and COSLA strategy 'Getting it Right for Young Carers' (2010) and the Social Care (Self-directed Support) (Scotland) Act 2013 which contains a discretionary power to support carers, including young carers.

There are other wider legislative frameworks and policy initiatives that are related to young carers in Scotland. Under the Social Work (Scotland) Act 1968 and the Children (Scotland) Act 1995, carers have the right to request an assessment of their ability to care. The Act states there is a duty for local authorities to identify and provide services for children affected by the disability of another family member, who may be a sibling, parent or other relative. The Social Care (Self-directed Support) (Scotland) Act 2013 came into force on 1 April 2014 and places a duty on local authority social work departments to offer people who are eligible for social care a range of choices over how they receive their support. Self-directed Support allows people, their carers and their families to make informed choices on what their support looks like and how it is delivered, making it possible to meet agreed personal outcomes. Potentially this could reduce the level and type of care that young carers need to provide.

1.2. Who is a young carer in Scotland?

There are a number of interacting factors in the concept of being a "young carer" and a "young adult carer" that impact on support for, and research on, young carers. This report draws on a variety of data and evidence sources, therefore the definitions are not entirely consistent.

In the literature there is no minimum time threshold of care that marks out a young carer (Graham, 2011, p. 11) as distinct from a young person who helps out, although the terms 'substantial' and 'significant' are often used to illustrate caregiving duties that mark out a young carer (Becker, 2000, p. 378). The nature of care activities are often elements in defining a young carer. These can be activities not usually expected of young people, such as intimate care or 'emotional labour' (Moore, et al., 2011, p. 166). The latter and its impact can be outside the direct caring: "A child who worries a great deal about their parent's illness or addiction may be regarded as a young carer on the grounds of undertaking emotional labour, even if they are not undertaking additional caring tasks" (Banks et al. 2002, p.15). Therefore whilst time and caring activities are ways of identifying young carers, the complexity of the caring should be borne in mind.

The Carers (Scotland) Act defines carers as those who provide or intend to provide care for another individual (the "cared-for person"). A young carer is aged under 18 years or aged 18 and a pupil at school. In addition, consideration will be given to the nature and extent of the care provided by the young carer being "appropriate". The young person will have the opportunity to discuss if the care they are providing is appropriate to their age and circumstances.

Young carers and young adult carers are in large part identified by their age and the meaning of this for their life stage, although there is no fixed definition for a young adult carer. The Carers Act Scotland will provide a Young Carers Statement that will continue until that carer is provided with an Adult Carer Support Plan easing the transition between young carer and adult services.

It is acknowledged that many young carers are hidden or not known about, primarily for four reasons:

• Many young people who care for others do not identify themselves as being a 'young carer' (Christie, 2006, p. 244). They may see their role as not particularly exceptional or unusual (Smyth, et al., 2011, p. 147) because caring responsibilities are situated within a normative framework of familial obligation (O'Connor, 2007, p. 168).
• Young carers can actively seek to conceal their caring role. This can be due to fear of stigma (Smyth, et al., 2011, p. 154). This is the case when the caring involves substance misuse or mental health problems ( ACMD, 2011, p. 50); (Christie, 2006, p. 191). It can be to avoid the label due to fear of unwanted intervention and worry about being separated from their parents (Moore, et al., 2011, p. 174), which may be based on seeing the experience of others. (In 2000 the Department of Health stated that parental ill health was the third most common reason for being admitted to care (Dearden & Becker 2005, cited in (Barry, 2011, p. 1)).
• Public services have previously been challenged for not effectively and consistently identifying and reaching out to support young carers (Barnardos, 2006, p. 6). This is particularly the case for young carers in travelling communities ( MECOPP, 2012, p. 12) and those who are home-schooled (Smyth, et al., 2011, p. 157).
• Societal norms can contribute towards the invisibility of young carers; the term 'young carer' may seem inappropriate due to the societal expectation for children and young people to be cared for rather than to care for others (Smyth, et al., 2011, p. 156).

These difficulties in defining and identifying young carers impact on the provision of support for and research on young carers.

The detailed analysis in this report is based on Scotland's 2011 Census. This is a reliable, robust source, although its limitations are discussed next. The data is supplemented with a discussion of the research evidence to provide further information and understanding of the experiences and impacts of young caregiving, and how to meet the needs of young carers.

1.3 Measuring the number of young carers

Based on the 2012/13 Scottish Health Survey ( SHeS) there are an estimated 93,000 young carers and young adult carers in Scotland. This is the best estimate for the total number of young people and young adults caring in Scotland. However, the sample is too small for detailed analysis. Scotland's Census 2011 also provides an indication of the number of young carers in Scotland and as a whole population survey has sufficient numbers to look at the profile of young carers in more detail. Both sets of data are based on self-identification as someone who undertakes caring duties (not necessarily as a 'carer').

There were 37,393 young people aged 4-24 (2.85%) identified as young carers in Scotland's Census 2011:

• 10,002 (1.47%) of young people aged under 4-15 identified themselves as carers. (There were a very few carers younger than this identified, but the numbers are so small that they are not reported here.)
• 27,391 (4.33%) aged between 16 and 24 identified themselves as carers.

Annex 1 provides a more detailed explanation for the differing numbers in these two surveys. This includes the method of survey completion although the key issue is that SHeS uses a category for providing care up to 4 hours a week, whereas the lowest category in the Census is up to 19 hours. Scotland's Census 2011, while underestimating what we understand to be the true level of young caring (by not capturing those doing a small number of hours of caring), allows for more detailed analysis of young carers.

1.4 Structure of the report

The report discusses the available data and evidence on:

• Who are young carers in Scotland?
• Young carers' health and well-being
• Young carers' education and employment
• Support for young carers