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Transforming the lives of young carers and their families

1. Summary of the impact

Young carers were not recognised or supported in policy or practice in the UK prior to Aldridge and colleagues’ research over the past three decades. Research by Aldridge during the assessment period has been used a) to inform and shape the introduction of new national legislation and guidance on young carers (the Care Act 2014 and the Children and Families Act 2014), and b) to implement policy and practice via new national guidance and development of a screening tool for health, social care and education professionals. These have improved health and social care professionals’ ability to identify and support young carers and their families (both in the UK and in other countries, including Japan and Tonga) so that they can better access dedicated support and assistance.

2. Underpinning research

Aldridge’s pioneering research and its subsequent influence on policy and practice has generated greater understanding about the needs and resilience of young carers and their families [R 1, 2, 3]. In 2014, the Department for Education (DfE) commissioned Aldridge, in partnership with the national social research agency, TNS-BMRB (now Kantar), to carry out a national study of young carers and their families ( The Lives of Young Carers in England). The research involved multiple strands to address the different objectives of the programme, including producing a robust estimate of the prevalence of young people with caring responsibilities, and an in-depth understanding of the lived experiences of young carers and their needs. This research showed clearly the adverse effects of caring on children, especially when this was unrecognised and unsupported, as well as the difficulties children and families faced in accessing the right kinds of support. The research also showed the kinds of assessment and support children and families required when a parent or other relative in the home had care needs and children were helping to provide a substantial amount of informal care [R 4, 5, 6]. The study used, and cognitively tested, questions from the young carer screening tool (devised by Aldridge; see S4) to identify young carers across England.

Questions adapted from the screening tool were also included in the first ever national study (2015) of the experiences and needs of children, including children with disabilities, living in Tonga, funded by the European Research Council. The study, conducted by Aldridge in partnership with two national Tongan women and children’s charities, Ma’a Fafine mo e Famili (MFF; For Women and Families); and Naunau ‘o ‘Alamaite Tonga Association (NATA), aimed to identify and understand the nature of Tongan children’s caring experiences as well as the impact of these on their lives and their aspirations and plans for the future.

Findings from both studies clearly showed the challenges of collecting accurate data on the prevalence of young caring by country, largely because of its ‘hidden’ nature in families who are often fearful of inappropriate child protection decisions that may lead to family separations; and because not all children and young people who provide informal care in families self-identify as young carers (these issues are discussed in detail in R3).

The DfE funded project in England was followed up with further funding from the Department of Health and Social Care in 2019 (Aldridge, in partnership with Kantar) to conduct research into the potential efficacy of a national Young Carers Recognition Scheme. The aims of this project were to identify ways of improving young carers’ access to health and social care services as well as a range of discounts (such as travel, food etc.) provided by key public and private sector providers. Outcomes from this project included the need for: greater recognition of the needs of young carers and their families; clearer national strategies for identifying children’s caring responsibilities and needs; a more coherent strategy for preventing children and young people taking on inappropriate caring roles in families.

3. References to the research

R1: Aldridge, J. **(**2015) Participatory Research: Working with Vulnerable Groups in Research and Practice Bristol: The Policy Press. Hard copy book

R2: Aldridge, J. (2012). Working with vulnerable groups in social research: dilemmas by default and design. Qualitative Research, 14(1), 112-130.

10.1177/1468794112455041

R3: Aldridge, J. (2018). Where are we now? Twenty-five years of research, policy and practice on young carers. Critical Social Policy, 38(1), 155-165.

10.1177/0261018317724525

R4: Aldridge, J. in partnership with Kantar Public (2017) The Lives of Young Carers in England: Omnibus Report, January 2017, Department for Education, Stationery Office, London. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/582575/Lives_of_young_carers_in_England_Omnibus_research_report.pdf

R5: Aldridge, J. in partnership with TNS-BMRB (2016) The Lives of Young Carers in England: Qualitative Report to the DfE, Department for Education, Stationery Office, London. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/498115/DFE-RR499_The_lives_of_young_carers_in_England.pdf

R6: Aldridge J., with TNS-BMRB (Clay, D., Connors, C., Day, N. and Gkiza, M.) (2016) The Lives of Young Carers in England: Brief, Department for Education: London. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/498116/DFE-RB499_The_lives_of_young_carers_in_England_brief.pdf

All research outputs were peer reviewed, including research reports published by Department for Education. Aldridge’s book is the culmination of extensive research, over many years, using creative, participatory methods with vulnerable or marginalised groups, including young carers. The book sets out, for the first time, a model of participatory research for working in more creative and ‘bottom up’ ways with vulnerable children and young people (and other groups), drawing on case studies and multi-layered and innovative methodological approaches.

4. Details of the impact

Aldridge’s research has resulted in greater awareness about the needs and resilience of young carers and has led to changes to UK policy and practice on young carers and their families. The research has been disseminated widely in the UK and beyond. In 2015, for example, Aldridge was commissioned by Research in Practice for Adults (RiPfa) to produce a practice guide and webinar for adult and children’s services professionals in the UK to help social services and social care professionals make better needs assessments of young carers and their families, following the introduction of new government legislation (the Care Act, 2014 and the Children and Families Act, 2014). In recognition of her research and policy and practice work on young carers, in April 2015, Aldridge was appointed as a National Institute for Health and Care Excellence (NICE) Fellow. In 2019, Aldridge was commissioned to write an illustrated book for young carers, their families and professionals: Can I Tell You About Being A Young Carer? (Jessica Kingsley Publishers, 2019), achieving extensive UK reach [S1] including for use in schools and in research across Japan to raise awareness about, and support for young carers and their families [S1].

Regarding the core pathway to impact, Aldridge gave evidence to the House of Lords Care Bill Report Stage and to the Government’s pre legislative scrutiny committee prior to the formulation of the Care Act 2014 and the Children and Families Act 2014 in October 2013; S2). Recommendations from Aldridge’s research, and her contributions to the consultative phases, outlined the need to improve identification and support for young carers and their families. In April 2015 the Care Act, 2014 and the Children and Families Act, 2014 were implemented and conferred new duties on local authorities to identify and support young carers and their families. This has led to the following impacts.

1) Contributing to the composition and implementation of the Care Act 2014 and the Children and Families Act 2014

Evidence from Aldridge’s research on young carers and their families [R1-R3], including from the national DfE funded study [R4- R6], was used to inform the government’s Carers Action Plan 2018-2020, and develop new practice guidance and tools for health, social care, and education professionals. In 2016, Aldridge developed guidance on the implementation of this new legislative framework (specifically, the whole family approach) for social work practitioners. This work included producing a Practice Tool for professionals [S3] and running a Webinar [S4] for Research in Practice for Adults (RiPfa). Social work practitioners from across the UK took part in the Webinar to improve their understanding of the new legislation and to improve their identification and needs assessment practices for young carers and their families.

In 2014, Aldridge devised the young carer questionnaire and screening tool – YC-QST-20 – to help health, social care and education professionals better identify, support, and improve the lives of young carers and their families under the new legislation. In 2015-2016, Making A Step Change (MASC), a DfE-funded project aimed at supporting the implementation of the Care Act 2014 and the Children and Families Act 2014 (with a focus on improving the identification of young carers) promoted the screening tool nationally [S5]. Internationally, the YC-QST-20 was also promoted across Japan via a new young carer-dedicated national website in Japan as a resource for professionals [S6, S7].

In 2018, Aldridge was asked to review and contribute evidence based on her ‘extensive research and expertise on young carers and their families’ to new Parliamentary Office for Science and Technology (POST) guidance (POSTnote) on for Members of Parliament on Unpaid Care. The POSTnote was published in July 2018 [S8]. These ‘flagship’ POST outputs are ‘trusted reports that help Members of the House of Commons and the House of Lords and UK Parliament staff navigate complex research’ (POST website).

2) Transforming the lives of beneficiaries

Aldridge works closely with young carers and their families who are supported by young carers projects. The 250 plus young carers projects currently in operation in the UK were set up as a direct result of Aldridge and colleagues’ research, policy and practice work that started in the UK in the late 1990s. Evidence from the research described in R3 and R4 above has shown clearly and consistently the significance and value of young carers projects for young carers and their families.

In 2017, families supported by Norfolk Carers Support featured in two films that demonstrate the direct impact of Aldridge’s young carer research in helping to transform the lives of young carers and their families [S9, 10]. During the assessment period, Aldridge worked in partnership with Norfolk County Council and the Norfolk Carers Support (NCS) service. Catherine Bibb, Young Persons Service Manager at NCS, said:

‘The research carried out by the Young Carers Research Group is really invaluable to our work because it provides us with an evidence base … We have noticed a change in young people’s confidence and their self-esteem. It’s really fantastic over a period of time to see those changes.’

In one of the films, which includes the voices of young carers and their families [S10], Hope and Joseph’s father describes the benefits to them of this kind of young carer support:

‘Each week the kids ask me “Dad, what we got at young carers this week?” They just can’t wait to go there. They’re doing better at school. They smile more. They’re happier.’

More than 166,000 young carers and their families, like those featured in the two films, have benefited from Aldridge’s young carer research. Recommendations from this research have both informed and shaped important policy and practice changes (e.g., the Care Act and Children and Families Act, both 2014), that have, in turn, helped to give greater recognition and support to young carers and their families across the UK and in other countries.

5. Sources to corroborate the impact

S1. Aldridge, J. (2019) Can I Tell You About Being A Young Carer? Jessica Kingsley Publishers (JKP) Hard copy of book. Jo Aldridge JKP blog and lesson plans for teachers: http://www.jkp.com/jkpblog/2019/01/young-carers-what-do-they-do-what-help-do-they-need/

S2. YCRG (Aldridge) contribution to Children and Families Bill (House of Commons Committee), as part of the National Young Carers Coalition.

S3. Young carers and their families: Confident assessment practice (Practice Tool, 2015)

Source: www.ripfa.org.uk

**S4.**Research In Practice for Adults Knowledge Exchange Webinar: Working with Young Carers: A 'Whole Family' Approach to Assessment

S5. YC-QST-20 ( http://www.ycrg.org.uk/youngCarersDownload/YCRG%20questionnaire.pdf); Explanatory Model:

http://www.ycrg.org.uk/youngCarersDownload/YCQST20EXMODEL.docx

Making a Step Change (MASC) promotes use of YC-QST-20

Source: makingastepchange.info

S6. Young carer website, Japan promoting national use of YC-QST-20: http://youngcarer.sakura.ne.jp/check.html; hard copy Japanese book on young carers citing value and significance of YCRG research.

S7. Letter corroborating impact from Tomoko Shibuya.

S8. Aldridge’s contribution to POSTnote on Unpaid Care

Source: researchbriefings.parliament.uk

S9. Impact of young carers research (film 1; and transcript)

Source: www.youtube.com

S10. Impact of young carers research (film 2; and transcript)

Source: www.youtube.com

Additional contextual information

Grant funding

Grant number Value of grant
EOR/SBU/2013029 £270,000
9498 £120,000
LU/ERC/JA/2015 £17,290