Summary of the impact

Publication of the first major piece of research on young adult carers [YACs] has led to recognition of a `new' group of carers in policy and practice, and the development of two new psychometric instruments.

Raising awareness with Government, policy makers and service providers, has resulted in the provision of new services and support and further education provision for YACs across the UK, and the psychometric tools are now being used extensively by organisations including Comic Relief, The Government Innovation Fund, the BBC, and in a dozen countries.

Underpinning research

The key researchers for this case study are Professor Saul Becker (PI), School of Sociology and Social Policy, November 2006 to present; Fiona Becker, Senior Research Fellow, School of Sociology and Social Policy, January 2007 to August 2010; Professor Stephen Joseph (CI), School of Sociology and Social Policy, April 2006 to August 2013 (transferred to School of Education).

Up to 2007, little was known about what happens to carers aged 18-24, their specific needs, and what support, if any, they receive. In response, Saul Becker secured £45,000 from The Princess Royal Trust for Carers (4) (now Carers Trust) to undertake the first national, mixed methods study of young adult carers [YACs]. The research includes a literature review, secondary analysis of Census data, two national surveys, focus groups, and over 50 in-depth interviews with YACs (1).

Data presented in the research provide new insights into the number, experiences, needs and support received by YACs. The research reveals for the first time the number of YACs in the UK (229,318; 5.3% of all young people). Other findings show, for example, that many YACs do not access further or higher education because of past and/or current caring responsibilities and those who do get to University are unrecognised, finding their academic performance can be impaired by combining study with caring. The research also shows that transitions to adulthood and independence, and finding and keeping paid work, are difficult when young people have to provide care at home.

Before 2007 there had been no specific and validated instruments for assessing the extent and nature of caring conducted by young people and for measuring outcomes on young carers. In response to this gap, Saul Becker and his team were awarded £23,000 by Comic Relief (5) to develop two psychometric instruments for use by policy audiences, practitioners, researchers and others to assess the amount and types of caring roles undertaken by young people, and the positive and negative outcomes of caring: (i) Multidimensional Assessment of Caring Activities Checklist, MACA-YC18; and (ii) Positive and Negative Outcomes of Caring Questionnaire, PANOC-YC20 (2). Over 500 YACs and young carers were involved in the development, testing and validation of the instruments (3).

References to the research

The quality of underpinning research is evidenced by the fact that the following outputs have been published in a peer-reviewed journal or are the result of a peer-reviewed funding process.

Research outputs

Research grants

4. The Princess Royal Trust for Carers, `Young adult carers 16-24 in transition', March 2007-December 2008, £45,000

5. Comic Relief, `Evaluation of Comic Relief 1 and development of outcome tools', 2007-2009, £23,000.

Details of the impact

Publication of what the National Institute of Adult Continuing Education (NIACE) has described as "the first major piece of research on young adult carers" (A) has led to a `new' group of carers being formally recognised. The work has given policy audiences, service providers and practitioners a research evidence base and validated instruments to inform and steer policy, service development and practice/interventions. "Until the publication of recent research by Becker and Becker in 2008, the term `young adult carer' [YAC] had not been formally used" (B).

Informing Government policy

The UK Government requested and utilised interim findings from the YAC research to signal in the 2008 National Carers Strategy (England) its concern for young carers' transitions into adulthood (C). In 2010, the new Coalition Government `refreshed' the England National Carers Strategy. The new Strategy recognised and differentiated between young carers and YACs and endorsed cross-departmental Government commitment to work with others to "provide young adults (including young carers) with continuity of careers advice" (D).

The Scottish Government also used the research to inform its 2010 Young Carers Strategy and cited the research extensively. It "concluded that the findings of a major study undertaken by Saul and Fiona Becker into the needs of young adult carers were highly relevant to this [Scottish] Strategy" (E). The Scottish Strategy's recommendations (Appendix 5 of (E)) for developing policy and services in Scotland draw almost verbatim on the recommendations on joined-up working in the original YAC research report and the specific recommendations therein about meeting the needs of YACs.

Saul Becker is the sole academic member of the National Policy Forum established in January 2013 by NIACE to take forward ideas and policy recommendations. In May 2013, the Care and Support Bill for England (Clause 41, 1b) stated that local authorities should consider young carers' current needs and how these might change post-18, to aid transition planning — a key recommendation of the YAC research (F).

The significance of the introduction of new services has been formally recognised in the House of Lords by Earl Howe, Parliamentary Under Secretary of State (Quality) Health, who stated "more young carers services are extending their age group to cover young adult carers ... the transition between children's services and adult services should be smoother" (G).

The Chair of the Standing Commission for Carers noted in the Foreword to the YAC report (1) that the research "provides an evidence base for the development and delivery of more personalised support and better outcomes for a vital but often `silent minority' of young people".

Inspiring service development

The original research report has been referred to as the evidence for developing new services for YACs in many local authorities (including Suffolk, Cambridgeshire, Blackpool, Birmingham, Nottinghamshire (H)) and by carers organisations in the UK. Numerous projects funded by the Government's Innovation Fund and through Comic Relief Programmes introduced services or expanded the eligible age range for support from 18 (young carers) to 24 — to include YACs.

The YAC research provided the evidence base for Carers Trust's successful bid to become the Co-Operative Society's Charity of the Year, whose support is worth an estimated £7m over three years (2013-16) to develop new services specifically for YACs.

Saul Becker has been invited as a steering group member to advise the National Union of Students in helping to develop national policy responses and recommendations for YACs attending university, and the NUS has added information and advice to its website for student carers. A number of universities are also engaging for the first time with the learning needs of YACs and are developing resources and support, including Essex, Oxford, Winchester and Nottingham. For example, in June 2013 Nottingham University hosted the first national University open day specifically for carers under the age of 24.

Providing psychometric tools to inform practice/interventions

The psychometric instruments (MACA and PANOC) developed by Saul Becker and his team have now been widely adopted. The instruments are used across the UK in most young carers projects, by local authorities, other researchers and professionals, and are increasingly being used internationally. For example, the multi-million pound Comic Relief Young Carers Grants Programmes from 2008 onwards required all funded projects to use the instruments for self-monitoring and evaluation. The Government's £1m Innovation Fund, announced in 2010, also required all projects to use the MACA and PANOC.

In 2010, the BBC used the MACA with 4000 secondary school pupils across the UK to screen for `hidden' young carers, advised by Saul Becker (I). The findings, reported widely by the BBC and other media, showed a much higher proportion of young carers than indicated by Census figures — 8% of all children — and received substantial attention by policy makers (J). These MACA-derived figures are now used widely, including by UK Government, as a more reliable indicator of the extent of caring amongst young people, e.g. (K).

In 2012, the MACA and PANOC were used by York Consulting and Ecorys as part of their evaluation of the Government's Innovation Fund and the Comic Relief Young Carers Grants Programme 2008-11. The evaluation of the PRTC's `Improving Health Outcomes Grant programme 2012-13' also requires evaluators to use MACA and PANOC. All fifty projects to be funded under the multi-million pound Co-op/Carers Trust YAC Programme (2013-16) must use MACA and PANOC (L).

Blackpool and a number of other local authorities used the MACA in schools to screen for hidden young carers. Nottinghamshire County Council uses the instruments to assess young carers as part of a new multimillion pound recurring programme of support (H). Young carers' projects across the UK use the tools for assessment and for determining levels and types of support (L).

On an international level, requests for translation of the instruments have been granted to Norway, India, Taiwan, China, Japan. The tools are being used by practitioners and researchers in the USA, Sub-Saharan Africa, Norway, Sweden, Switzerland, Canada, New Zealand and Australia (M). In Norway (N) for example, Saul Becker is advising government departments that are intending to use the MACA to screen for hidden young carers, and from this evidence base they intend to develop policy and services.

Raising awareness

The research also received prominent coverage on national television and radio. In October 2012, BBC Radio 1 broadcast the first radio show specifically on YACs, `Keeping Mum', the commissioning and content of which was directly informed by the YAC research findings. Five YACs hosted a two hour show which clearly resonated with other young people and YACs, as illustrated by many emails and tweets received by the BBC. Official BBC figures give combined listenership for the show as 415,000 and related news reports and shorter appearances reached a further 11 million radio listeners and 3 million TV viewers. As a result of the programme, the Care Minister confirmed to the BBC that schools, colleges and GPs must "up their game" for YACs.

Dissemination to policy and practitioner individuals

Since 2008, Saul Becker has been invited as `expert' keynote speaker to present research findings to MPs, Lords, Ministers, senior civil servants, service providers and young adult carers in the Houses of Parliament and to Government departments in countries which include Norway, Sweden and Australia. Saul Becker used 30 keynote invitations at policy and practitioner conferences across the UK and internationally to disseminate the Manual and the applicability of the tools, including providing `master classes' to practitioners in the UK, Australia, Norway and Sweden on how to score and interpret the findings.

The former Department for Children, Schools and Families made the research report (1) available as a free PDF download on its website and the publication of the research report (1) and the user Manual for MACA and PANOC (2) was also accompanied by a programme of active dissemination. This included coordinated press releases from the University of Nottingham and the PRTC, and emails to over 4000 policy makers and practitioners across the world, generating international interest. The Manual and research report are available free on the Carers Trust website and on Saul Becker's. Paper copies of the Manual were sent to projects involved in the research and to all 350 young carers' projects in the UK.

Sources to corroborate the impact

A. NIACE policy paper (2013) Access and Inclusion: Young Adult Carers and Education and Training, Leicester: NIACE, p. 7.
http://www.niace.org.uk/sites/default/files/access_and_inclusion_-_young_adult_carers_and_education_and_training_1.pdf

B. Aylward, N. (2009) Access to Education and Training for Young Adult Carers: Project Summary Report, Leicester: NIACE, p.12.
http://shop.niace.org.uk/media/catalog/product/f/i/file_3_28.pdf

C. HM Government (2008) Carers at the Heart of 21st-Century Families and Communities, London: Department of Health, p 123 and reference 44.
(https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/136492/carers_at_the_heart_of_21_century_families.pdf)

D. HM Government (2010) Recognised, Valued and Supported: Next Steps for the Carers Strategy, London: Department of Health, p 14 and p 50.
(http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_122393.pdf)

E. The Scottish Government (2010) Getting It Right for Young Carers: The Young Carers Strategy for Scotland 2010-2015, Edinburgh: The Scottish Government, para 8.20.
http://www.scotland.gov.uk/Resource/Doc/319441/0102105.pdf

F. Care Bill (HL Bill 1) Clauses 60-61, pp 46-47.
http://www.publications.parliament.uk/pa/bills/lbill/2013-2014/0001/lbill_2013-20140001_en_6.htm#pt1-pb14-l1g61

G. House of Lords Debates, 14 January 2013, Carers — Question, 2.52 pm.
http://www.publications.parliament.uk/pa/ld201213/ldhansrd/text/130114-0001.htm

H. Project Manager, Nottinghamshire County Council. Corroborate the direct usage of the psychometric research and instruments for the screening and assessment of young carers and as an evidence base for local authority policy and practice.

I. Senior Reporter and Feature Maker, BBC. Corroborate the impact and beneficiaries of the YAC research and psychometric research and the usage of both sets of research in BBC programmes.

J. BBC News 16 November 2010. "Cameron warns on child carer cuts".
http://www.bbc.co.uk/news/education-11757907

K. Department of Health press release 13 April 2013. "School nurses to play a bigger role in improving children's health". https://www.gov.uk/government/news/school-nurses-to-play-a-bigger-role-in-improving-childrens-health

L. Director of Policy, The Carers Trust (formerly The Princess Royal Trust for Carers). Corroborate the quality, impact and widespread professional usage and beneficiaries of the YAC research and psychometric tools.

M. Chief Executive, Carers Association of South Australia. Corroborate the use of MACA and PANOC in Australia.

N. Professional Advisor, BarnsBeste (Children's Best — National Competence Network for Children as Next of Kin), Norway. Corroborate the use of psychometric tools in Norway.