Young Adult Carers: Should Society Be Comfortable With The Sacrifices They Make?

Main Category: Caregivers / Homecare
Also Included In: Pediatrics / Children's Health
Article Date: 17 Dec 2008 - 1:00 PST

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As Christmas approaches thousands of young adult carers will once again face the emotional turmoil of juggling their commitments at home with going out and sharing in the festive celebrations.

Their vital role in society and the dedication and sacrifices they make are revealed in a new report published into the lives of what has been described as a 'hidden' and neglected group of carers. Some of their personal experiences have been published in this report.

Carried out by Young Carers International Research and Evaluation (YCI) at The University of Nottingham, the study shows that many of these young adults show great commitment to their caring role even though it can compromise their ability to succeed in life and deprive them of the opportunities enjoyed by their peers.

There are an estimated 290,000 young adult carers aged between 16 and 24 in the UK today. Many of them will have been caring since the age of five or six. Some do not even realise they are carers until it is pointed out to them at school or by other health or social care professionals. The young adult carers in the report are looking after family members, usually their mother or a sibling, who have medical conditions or physical impairments, mental illness or problems with drug and alcohol misuse.

The study was funded by The True Colours Trust, in association with The Princess Royal Trust for Carers which is now calling for urgent action from the Government, statutory services and other bodies to co-operate to raise awareness of and provide support to these young people.

The study was carried out by Fiona Becker a senior research fellow in the School of Sociology and Social Policy and Saul Becker, Professor of Social Policy and Social Care and Director of YCI.

Professor Saul Becker said: "As a society we know a lot about adults who are carers and there is a growing body of research on children under 18 who are carers. This new research is the first to show the extent of caring amongst 16-24 year olds and how they are often invisible to service providers. Many have little, if any, choice abut caring and experience difficult transitions to adulthood, work and in their own personal lives".

Researchers used personal accounts to investigate the changing nature of caring tasks and responsibilities; experiences of education at school, college and university; friendships, relationships, leisure and lifestyle; income, jobs, careers and aspirations; and issues of leaving home and independence.

As well as in-depth interviews researchers held focus groups, carried out surveys of young carers projects and adult carers services and analysed census data to assess the role of young carers projects; emerging service responses for young adult carers; and how carers' needs can best be met.

Researchers also uncovered what they believe has, until now, been a completely hidden group - student carers. They found that if these young adults did go to university they experienced feelings of guilt and constantly worried about the people they care for. Others gave up any possibility of going on to higher education because of their caring commitments - opting to stay at home and obtaining low income work.

Fiona Becker said: "There are two key issues at stake here. The first is how to enable young carers with potential to get to university in the first place. The second is to ensure that those who are at university are able to do well in their studies and benefit from the wide range of experiences open to students. Both of these are compromised severely when young people have ongoing caring responsibilities in the home".

Analysis of the Census data 2001 shows that around 61,000 young carers in the UK are aged between 16 and 17 - still legally children.

The report shows:

• Nineteen per cent of them spend more than 20 hours each week caring and seven per cent spend up to 50 hours a week in this role.
  
  
• They wanted to go out more but caring and poverty precluded this.
  
  
• Although some found an understanding attitude from their school others had been 'punished' as a consequence of being late or missing school due to caring.
  
  
• Parental encouragement and a positive attitude towards education influenced young carers' school attendance and achievement.
  
  
• Many were supplied with unsatisfactory careers and job search advice.
  
  
• Many wanted more information and advice about further and higher education and funding opportunities for both.
  
  
• They had little understanding about local services.
  
  
• They were anxious about who would support them once they turn 18.

There are 229,300 young adult carers aged 18 to 24 in the UK (Census data 2001) and the report shows:

• Twenty five per cent provide more than 20 hours care a week and 12 per cent provide care for more than 50 hours a week.
  
  
• Many provide 'emotional' as well as intimate care - helping with bathing and washing.
  
  
• A third reported 'strained relationships' with the person they were supporting.
  
  
• For those helping to care for a sibling caring duties often decreased as siblings got older.
  
  
• Many were unaware of help and support available from adult carer services.
  
  
• Support from college staff was important.
  
  
• Choices for further and higher education were compromised by the need for either 'distance caring' (returning home at weekend or holidays) or having to attend local universities in order to live at home to balance care and study.
  
  
• Leaving home was complex and often compromised due to their caring responsibilities.
  
  
• Needing to care often mediated their aspirations and future plans.

Alex Fox, Director of Policy and Communications at The Princess Royal Trust for Carers said: "We need to look further at why families find themselves relying on a young person for care at such a crucial time in their lives and ask ourselves as a society if we are comfortable with the sacrifices some of these young people have had to make."

In the report's foreword Dr Philippa Russell, Chair, Standing Commission on Carers describes the report as essential reading for commissioners and providers of both children's and adult services. She said: "The data within this study provide new and important insights into the diverse experiences of what is often a 'hidden' group of carers. It reminds us of the importance of thinking strategically about the 'care' careers of young adult carers; of the risk of loss of ambition and opportunity; and the hugely complex business of leaving home with the confidence that high quality replacement care is available in their absence."

Dr Russell goes on to say: "This study 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."

Care and support is high on the local and national agenda but many young adult carers questioned by researchers felt they were invisible to politicians and to policy makers.

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Article adapted by Medical News Today from original press release.
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A copy of this report "Young Adult Carers in the UK: Experiences, Needs and Services for Carers aged 16-24" can be downloaded free from http://www.carers.org or from the resources link alongside the press release at http://www.communications.nottingham.ac.uk.

The University of Nottingham is ranked in the UK's Top 10 and the World's Top 100 universities by the Shanghai Jiao Tong (SJTU) and Times Higher (THES) World University Rankings.

It provides innovative and top quality teaching, undertakes world-changing research, and attracts talented staff and students from 150 nations. Described by The Times as Britain's "only truly global university", it has invested continuously in award-winning campuses in the United Kingdom, China and Malaysia. Twice since 2003 its research and teaching academics have won Nobel Prizes. The University has won the Queen's Award for Enterprise in both 2006 (International Trade) and 2007 (Innovation - School of Pharmacy), and was named Entrepreneurial University of the Year at the Times Higher Education Awards 2008.

Its students are much in demand from 'blue-chip' employers. Winners of Students in Free Enterprise for four years in succession, and current holder of UK Graduate of the Year, they are accomplished artists, scientists, engineers, entrepreneurs, innovators and fundraisers. Nottingham graduates consistently excel in business, the media, the arts and sport. Undergraduate and postgraduate degree completion rates are amongst the highest in the United Kingdom.

The Princess Royal Trust for Carers is the largest provider of comprehensive carers support services in the UK. Through its unique network of 144 independently managed Carers' Centres, 85 young carers projects and interactive websites (http://www.carers.org; http://www.youngcarers.net), The Trust currently provides quality information, advice and support services to over 350,000 carers, including over 20,000 young carers.

Source: Lindsay Brooke
University of Nottingham