Young carers: review of research and data

5. Support for young carers

Introduction

This chapter discusses the evidence on support for young carers. It considers support provided in different settings and at different life stages. The evidence in this area is limited with a lack of research that explores the efficacy of particular interventions and strategies that aim to improve outcomes for young carers and their families (Banks, et al., 2002, p. vi). Apart from internal evaluations carried out by the likes of young carer groups, the literature search found only one study which tested the effectiveness of particular strategies for young carers (Ronicle & Kendall, 2011).

Key points:

• Young carers are formally recognised and entitled to a needs assessment but there is evidence to suggest that access to assessments could be improved.
• There may be a lack of awareness from professionals and young carers can feel unacknowledged or reluctant to seek help.
• Effective support can be either or both support for the cared-for person, and support to help young carers maintain a balance with other aspects of life.
• 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.

5.1 Understanding Young Carer's Needs

Young carers are formally recognised in legislation and are entitled to a needs assessment. 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. This provision applies to children under the age of 16 (as enacted through the Community Care and Health (Scotland) Act in 2002). There are also other assessments that a young person may be offered, including a child's plan.

The provision of a good quality assessment is essential in order to meet young carers' needs. It is vital that young carers and their families have access to high quality information and advice about their entitlements to various supports, for example health and social care support, and welfare benefits (Sempik & Becker, 2013, p. 5). For example, as discussed in Chapter 4, many young carers have mental health needs. It has been argued that young carers should be a priority group in terms of being able to access counselling and mental health services (Sempik & Becker, 2013, p. 5).

Past research suggests considerable scope to increase the numbers of those receiving an assessment, although on-going developments in policy and practice in Scotland may be addressing some of these concerns. SCIE (2005, p. 11) suggest that young carers are not often assessed due to the following reasons:

• There is a lack of awareness amongst professionals and young people themselves about young carers' rights to be assessed.
• There also may be a potential reluctance to seek help from the young person or young person's family (see also Moore & McArthur (2007, p. 565).

A variety of writers have advocated an approach (Svanberg, et al., 2010, p. 740); (Moore, et al., 2011, p. 174) (Moore & McArthur, 2007, p. 561) that recognizes the importance of providing services to support the cared-for person, meeting the needs of the young carer and giving them a voice (Banks, et al., 2002, p. 70). There is huge potential for health professionals to help better identify young carers(they are well placed to do so) and to put them in touch with services (Thomas, et al., 2003, p. 45), (Sempik & Becker, 2013, p. 3)

Ronicle & Kendall (2011) carried out an evaluation of a pathfinder which reported on the efficacy of a whole family approach for young carers. Practitioners worked with 114 families across 18 English local authorities and provided support in various ways, including:

• Organising activities for the whole family
• Involving young carers in 'positive activities'
• Drawing upon support in the wider community
• Carrying out targeted work with key partners such as schools and adult services.

The evaluation found that the project was effective in reducing inappropriate caring tasks and reducing concerns about peer relationships and lack of engagement in positive activities. There were also some improvements in school attendance. Due to the likelihood of different causal factors at play in the lives of these families, the positive outcomes achieved for the young carers may not be directly related to the interventions being specifically based on a whole family approach.

5.2 What do Young Carers Want?

Young carers should be involved in designing and running all interventions, services and strategies. Given that young carers may be reluctant to identify themselves or seek help it is important to understand how they feel they could be effectively supported. The evidence suggests that this could be either or both support for the cared-for person, and support to help young carers maintain a balance with other aspects of life (Moore & McArthur, 2007, p. 563), (Hamilton & Adamson, 2013, p. 115).

In terms of support for the cared-for person this could include more respite opportunities (home or residential), particularly for example when the young carer is attending school, when they are sick, or when the family is experiencing conflict, or could include providing assistance with personal and intimate care tasks (Moore & McArthur, 2007, p. 563). Support to help young carers maintain a balance with other aspects of life included transport in order to participate more in community life and attend projects and leisure activities; support for siblings (Moore & McArthur, 2007, p. 563), and assistance and support at transition points in their lives (Hamilton & Adamson, 2013, p. 115).

Studies have also found that sometimes young carers do not want to disclose their caring roles to others which can exacerbate the 'invisibility' of this group (Christie, 2006, p. 198). Due to these disclosure issues, Banks et al (2002, p. 243) argue that where young carers are reluctant to identify themselves, support which singles out young carers may be of limited value. Possible options which may be seen as confidential and optional include the provision of a telephone hotline and online options including websites, therapy and counselling (Banks, et al., 2002, p. 234) (Ali, et al., 2012, p. 616).

There is some evidence that young carers have felt unacknowledged and unrecognised in a variety of settings (Bjorgvinsdottir & Halldorsdottir, 2013, p. 38) and that there is a lack of awareness amongst professionals about young carers (Thomas, et al., 2003, p. 44). Given the finding that resilience appears to be associated with recognition of the child or young person's caring role (Cassidy, et al., 2014, p. 606), it is vital that young carers are recognized and feel valued for what they do.

5.3 Young Carer Services

Research has consistently found that young carers greatly value young carer projects. Children and young people in receipt of these services feel recognised, supported and valued (Thomas, et al., 2003, p. 41) (Barry, 2011, p. 535) (Banks, et al., 2002, p. 241) Young carers much prefer services that are accessible and provided by the third or voluntary sector as opposed to statutory services ( SCIE, 2005, p. 10). However, such projects are often have only short-term funding and are vulnerable to closure. Furthermore, many young people do not have a young carer's service near to them, which 'results in a geographical inequity of access' (Banks, et al., 2002, p. vi) ^[13] .

Young carers' projects should be given the resources to reach out to children and young people with caring responsibilities in a meaningful and regular capacity, with greater support and for longer periods of time (Barry, 2011, p. 16). Young carers' projects often do not have the resource or capacity to offer tailored or targeted services for certain sub-groups of young carers, which might be beneficial. Particularly for young adult carers, it has been recommended by Becker & Becker (2008, p. 78) that young carer services should plan for young carers leaving their service, empowering them to use other services after they leave.

5.4 Meeting Young Carers Needs at School

Many authors highlight the importance of provision in the school context and there is a range of suggestions for possible approaches to providing support. However, although there are suggestions on how best to meet young carers' needs in school (summarised below), more research and evaluation evidence is needed to understand how different approaches can benefit young carers.

Suggested approaches cover different ways of identifying and communicating with young carers and raising awareness of the nature of caring and its impacts for young people and school professionals. Local approaches may include having a carers lead or strategy, or including the concept of caring in classroom discussions to enable young people to feel that they can seek support. Other ways of supporting young carers could include taking account of their needs in existing services such as careers advice and school nurses.

5.5 Support for young adult carers

Young adult carers are a distinct group who have different needs as they transition into independent living, moving out of the family household, and may be participating in further and higher education and/or entering the labour force (Hamilton & Adamson, 2013, p. 102). They are an overlooked group, with limited services available which are specific to their needs, and little existing awareness about the specific challenges that they face (Sempik & Becker, 2014, p. 2). As previously noted, young people tend to take on more care as they grow older, but they are also less likely to be accessing a young carer service, depending on the age at which the service provision ends.

Transitions into adulthood can be particularly difficult for young adults with caregiving responsibilities (Dearden & Becker, 2000, p. 4) (Hamilton & Adamson, 2013, p. 101). Young adult carers often find it difficult to make decisions surrounding leaving the family home and making decisions about the future about whether to go into employment or higher/further education (Hamilton & Adamson, 2013, p. 115). Scottish Youth Parliament (2014) focus groups found that the transition from school to university or college is very difficult and extra support was needed during this time. Young adult carers also noted that it was particularly difficult to be classified as an "adult carer", but not have access to any young adult services. They expressed feeling out of place among older adult carers and missed the support of their peers and services tailored to young carers.

Colleges and universities tend to have general support and counselling services that young adult carers can access, however they tend not to have specific groups or support for young adult carers who are studying (Becker & Becker, 2008, p. 37).

Research has found that young adult carers require employers to be understanding and flexible regarding workplace arrangements (Hamilton & Adamson, 2013, p. 108). It has been argued that employers should understand the challenges young adult carers may be facing in their lives, and develop policies to clearly define the support and flexible working arrangements available for carers in the workplace (Sempik & Becker, 2014, p. 4).

Conclusion

Research on support for young carers identifies several important issues. Although assessment of young carers needs is a crucial part of accessing support, there is evidence that suggests only small numbers of young carers may be accessing an assessment. The reasons for this arise both from a potential reluctance on the part of young carers to identify as carers and also a potential lack of awareness on the part of service providers. However, as a result, young carers can feel unrecognised and unacknowledged in a range of settings and their needs can go unseen and unsupported.

When appropriate support has been accessed young carers can feel supported and valued and better able to balance caring with other aspects of their lives. There is limited research evidence on the efficacy of particular interventions and this is an important gap in the evidence base. Examples from practice are mostly base on a person centred approach to support.

It is important that support is provided in a way that is sensitive to concerns about identifying as carers and seeking help. Evidence from young carers themselves suggests that support can be either for the young carer directly or the cared for person.

However, the majority of existing studies only examine the experiences of those who are in touch with young carer projects. Knowledge is therefore biased towards these young carers who seek help and support. We know that many others are not in touch with young carer services. The experiences and needs of this hard-to-reach population are not well reflected in research studies.