Caring Together: The Carers Strategy for Scotland 2010 - 2015

3. PROFILE OF YOUNG CARERS

Prevalence

3.1 Some studies have estimated there to be over 100,000 young carers in Scotland, which is 1 in 10 of the school age population. However, there are variations in the estimated number because different definitions of a 'young carer' exist and because universal services do not keep information on the numbers of young carers they are working with. Further, children and young people who provide care do not always see themselves as 'young carers'.

3.2 Some young people perform a caring role without it being to their detriment and very much see this as a normal part of family life. Other young people do not want to be identified as a 'young carer' for fear of stigma, or being labelled and treated differently.

3.3 Some 'young carers' identify strongly with the term, as it recognises and describes what they do and defines important aspects of their life. It gives them identity, in common with other young people and conveys the contribution they make to looking after a loved one.

3.4 Some young people provide care to adults who also don't recognise the young person as a 'young carer'. Other adults are fearful of the kinds of interventions that statutory services may make and therefore don't allow services into the home, or avoid sharing information with professionals on how much care the young person is providing.

Census 2001

3.5 The last Census included a question to help identify the numbers of unpaid carers in Scotland, their ages and the impact their caring contribution made on their own health. This identified 16,701 young people in Scotland who were recorded as providing some unpaid care (see Appendix 3).

3.6 The Census indicated that 13,511 young people were providing less than 20 hours care each week, 3,190 were providing more than 20 hours care each week, with 1,364 providing over 50 hours.

3.7 We need to be aware that the impact of caring need not correspond to the number of hours caring. For example, during the night some young carers will be up for a short time, but on a number of occasions. They may only be caring for a few hours in total, but the impact that this has on them may be very significant.

3.8 In 2012, following the next Census, the Scottish Government will analyse the data on young carers in order to compare this to the previous Census and other reliable data sources.

3.9 However, as Saul Becker ¹³ cautions, because the Census tends to be completed by adults these figures should be seen as "minimums". He highlights that there are many thousands of young people living in households where someone is affected by substance misuse, illness, disability or mental health problems, where they may be called upon to perform caring roles. While they may be affected by their parent or sibling's condition this does not necessarily mean they are providing care, or that their caring is "regular, significant or substantial" and to their detriment.

Other Sources

3.10 Other approaches to gathering information on the number of young carers in Scotland have identified much higher numbers than the 2001 Census. Four small-scale studies (see Appendix 3) found that 10% and 13.5% of respondents identified themselves as young carers. Applying these figures to the school age population suggests that there could be between 80,000 and 115,000 young carers in Scotland.

3.11 However, these studies were based on relatively small samples and may have taken a broad interpretation of the term 'young carer'. While they suggest that there may be high numbers of young carers in Scotland, these studies only provide very approximate numbers of the possible young carer population in Scotland.

3.12 The approaches and principles being advanced by Getting It Right For Every Child provide an opportunity to address some of the issues around young carers as a 'hidden population'. With its focus on well-being indicators, GIRFEC seeks to identify all the needs of a young person, rather than just those associated with a particular role or label.

3.13 As the implementation of GIRFEC continues across Scotland there may be less need to identify young people specifically as 'young carers'. In the meantime, however, further action is necessary.

ACTION POINT 3.1

The Scottish Government will make the information on young carers through surveys such as the Scottish Household Survey and Scottish Health Survey accessible to researchers, care providers and the public through its website and publications.

ACTION POINT 3.2

In respect of the 2011 Census, the views of young carers' organisations will be taken into account in deciding what analysis tables will be produced for the General Register Office for Scotland 2011 Census website.

ACTION POINT 3.3

The Scottish Government through ScotXed will introduce a classification of 'young carers' in the 2011 school census, which will report on the numbers of young carers who have been identified in schools. This will provide a baseline number and raise awareness of young carers, resulting in more being identified and supported.

Profile of Young Carers

3.14 Becker and Dearden ¹⁴ studied the profile of young carers in 2004 by sourcing information from 87 dedicated young carer services across the UK, in respect of 6,178 young carers. This information (see Appendix 3) provides a helpful overview of the characteristics of young carers and caring, which likely reflects the situation in Scotland.

3.15 It highlights that: many young carers are living in lone parent families; the average age of young carers is 12 years; most are caring for someone with a physical health problem; just over half are caring for their mothers and a third for a sibling; many are providing emotional support, in addition to more practical help and personal care; one in ten are caring for more than one person; half the young carers are caring for 10 hours or less, one third for 11-20 hours and 16% for over 20 hours; caring can be a long-term commitment and can start at an early age.

3.16 There may be value in determining whether the 3,500 Scottish young carers currently being supported by dedicated services have similar characteristics to those identified by Dearden and Becker, or whether there are any differences. This would help to identify and aggregate need, and hence to define priorities for support.

ACTION POINT 3.4

By 2012 the Scottish Government will seek to commission research to gather information on the characteristics of young carers in Scotland being supported by dedicated young carers' services.

3.17 The Dearden and Becker research did not identify the numbers of young carers affected by parental substance misuse as this was included in the "mental health" category. This may be something we would want to address in any Scottish research.

Specific Groups of Young Carers

3.18 It is important to acknowledge that while all young carers are individuals, they may also have some common experiences. Some young carers will also be amongst other specific groups who have particular challenges of their own to overcome.

Young Lesbian, Gay, Bisexual or Transgender ( LGBT) Carers

3.19 Young LGBT carers have to deal with issues around identity and sexuality at the same time as having to undertake caring responsibilities. These demands can affect their ability to form friendships, to access services and to source the necessary support to overcome these challenges. They may fear discrimination and stigma, as a result of both their sexuality and their caring responsibility, which may be to the detriment of their mental wellbeing.

ACTION POINT 3.5

Recognising the particular challenges facing young LGBT carers, the Scottish Young Carers Services Alliance will work in partnership with LGBT Youth Scotland in order to develop information, advice and support for LGBT Young Carers.

Young Carers in Rural and Remote Areas

3.20 Young carers living in rural and remote areas face particular challenges. There may be a lack of services, or those services that are provided may not be available when the young carer needs them. Limited public transport options can affect young carers' opportunities to attend groups and activities and to have contact with their peers, resulting in further isolation. The cost of travel, of public transport and of goods and services can be greater, impacting significantly on those families on lower incomes.

3.21 Rural and remote communities are often more close-knit than in urban settings and can be supportive to families where someone is affected by a disability. In these circumstances, young carers may be also be better supported, with friends and neighbours relieving them of some of their caring responsibilities.

3.22 However, in smaller communities families may not enjoy as much privacy, and the stigma associated with mental health or substance misuse difficulties may be felt more acutely. Young carers in rural and remote areas may have to deal with the social and psychological effects of this without being able to readily access the support that may help them deal with this.

3.23 In addition, in rural and remote areas some families are reluctant to seek help from health and social care services as they may know the practitioners personally. If families are struggling to cope without support, young carers may have to take on additional responsibilities and deal with more onerous demands.

Young Adult Carers

3.24 For young people approaching adulthood the challenge of leaving school, entering further education or employment and leaving home can be difficult.

3.25 These challenges are often compounded for young carers, for whom caring can have a cumulative effect, resulting in social isolation and impacting on their self-confidence and mental health. The demands of caring can lead to children and young people not fulfilling their potential at school, which can limit older young carers' future opportunities. (Further information on Young Adult Carers is included in chapter 8.)

3.26 The 2001 Census highlighted 21,115 people between the ages of 18 and 25 providing unpaid care in Scotland (see Appendix 3). Of these, 15% were providing between 20-49 hours each week and 11% were providing more than 50 hours care. This is a significant commitment to make at a time when these young adults might otherwise be moving into employment, further education and training, achieving greater independence, developing their own relationships and starting their own families.

Black and Minority Ethnic ( BME) Young Carers in Scotland

3.27 To date no substantive research has been carried out into Scotland's BME young carer population. Young carers are generally a 'hidden' group and BME young carers may experience further isolation. They are under-represented in the numbers supported by dedicated young carers' services and there is no specific BME young carers project in Scotland.

3.28 There are also some indications that the number of BME young carers may be proportionately greater than the number of young carers within the majority population due to the higher levels of poverty, ill health and general disadvantage within some Minority Ethnic populations.

3.29 Racial stereotyping about the prevalence of the extended family and a belief that "they look after their own" can result in little or no service being provided. In addition, practitioners may be reluctant to intervene in what they perceive as a cultural matter for fear of being seen as insensitive or racist.

Other Groups

3.30 There are some communities of young carers we know very little about, most notably: refugees, asylum seekers, gypsy travellers and young carers who themselves have disabilities. The Scottish Government will consider the need for research in this area.

ACTION POINT 3.6

In 2011-12 and beyond, local authorities, Health Boards and all carer support organisations are to identify carers and young carers in the hard to reach groups, including BME carers.

ACTION POINT 3.7

In 2011-12, the Scottish Government will draw up a specification and seek to commission research on young carers in communities we know little about, including BME young carers, new migrant workers and gypsy travellers.

ACTION POINT 3.8

The Scottish Government, with COSLA and partners, will ensure that all the Action Points in this strategy are taken forward in ways which fully address the equalities perspective.