Young Adult Carers in the UK:
experiences, needs and services for
carers aged 16-24
Fiona Becker
The University of Nottingham
23rd March 2009
Context: young carers 1992-2007
Our study
Census data 2001
Headline findings 16-17s
Detailed findings 18-24s
Models of service delivery
Needs of young adult carers
Issues for consideration
Focus on young carers: 1992
• No reliable government figures on the number of young
• 2 or 3 small-scale publications
• 2 dedicated young carers projects
• No law, policy or guidance focused specifically on young
• Very little public or professional awareness or recognition
of young carers
Focus on young carers: 2008
• Government statistics (Census 2001)
• Dozens of research studies
• 350 dedicated young carers projects in the UK in contact
with approx 30,000 young carers
• Legal rights, policy and guidance specifically for young
carers, National Carers Strategies etc
• Extensive public and professional recognition of young
• TV documentaries
The research study
• Literature review
• Secondary analysis of 2001 Census data
• Survey of 30 young carers project workers
• Survey of 13 adult carers services
• Five focus groups with 29 young carers
aged 16-17
• Discussions with staff in focus group sites
• In-depth interviews with 25 young adult
carers aged 18-24
• Two consultation workshops with 45
project workers
• Analysis, synthesis and writing up
Number of carers in UK
(Census 2001)
• 5.8 million carers
(10% of the total population)
• 175,000 of these are children under 18
(2% of all children are young carers)
• 230,000 are carers aged 18-24
(5% of all young adults are carers)
Number, % and age of young carers aged 0-24 in the UK,
by hours caring per week (2001 Census)
50+ hours
Total in UK
Findings: young carers aged 16-17
Most participants have cared throughout their childhood
They show many of the characteristics (and outcomes) of being a young
Evidence of conflict between their needs for independence and increased
Variable school experiences
Many reported a lack of adequate career advice or support
Low income families affects quality of life, opportunities and aspirations
Great concern about support for them post 18
Variable evidence that young carers projects systematically prepared
young carers for transitions (life events and services)
Positives and negatives of caring
(16-24 years)
Gaining life skills
Preparation for independence
Close family relationships
Giving something back
Development of empathy,
sensitivity and caring skills
Development of skills and
interests for care-related
• Poor emotional well-being:
worry, stress, anxiety,
depression, anger,
resentment and resignation
• Physical ill-health –
back-ache, colds
• Neglectful of own health and
• Risk-taking behaviours
Findings: young adult carers aged 18-24
The participants
Who are they caring for and why?
Care tasks
Key themes:
- leaving home
- friendships
- education
- careers & employment
- knowledge gap
The participants
• 25 participants: 18 female and 7 male
• Age range: 18 - 24 years (average 19 years)
• Ethnicity: White British, Welsh, Scottish, Pakistani & Indian
• 7 fieldwork sites across Britain
Who are they caring for & why?
Who do they care for?
Mother: 18
Sibling: 5
Others: father(2), siblings (1), uncle (1), partner (1), grandma (1)
Caring for more than one person: 5
Parents themselves: 3
Onset of caring
From 4 to 17 years
High number of single parent families (15), family structure and position in
family, extent to which formal care services are provided or accepted,
alternative informal support, established pattern of caring
Type and frequency of care tasks
Providing caring tasks ‘a lot of the time’:
Two thirds performed household tasks
Two thirds were providing emotional care
A third were providing practical support
A third were providing personal and intimate care
Many others were providing a combination of tasks ‘some’ or ‘a lot of the
Impacts: little time for themselves, juggling competing demands, no space
for spontaneity, restricted opportunities for leisure, relationships,
employment and training
Caring tasks: participant perspective
“Because it’s like if my father’s drunk and my mum’s cut
herself at the same time we’ve got to try and cope
with the two of them, and it’s kind of hard because I
don’t want to leave my sister, even though she’s 18, I
don’t want to leave her with my father and go down
the hospital with my mum, and my father can’t even
go down the hospital with my mum because he
shouts and swears”
Kelly, aged 20
Leaving home or not?
Two thirds were living at home with the remainder either living
at university or in their own home
Decisions about leaving home are often complex and difficult, and
in many cases choice about when to leave is restricted
Barriers: close inter-dependent relationship, low income, burden it will
place on others, fear of consequences, guilt, low confidence, gender and
cultural expectations
Enablers: family encouragement, condition of the person being supported
and their willingness to accept formal support, other informal support,
quality of the care package, and money/grants
Leaving home: participant perspectives
“I was always thinking oh my god like yes it’s only London but I
think it’s two hours away, what if she fell, what if something
happened? That’s going to take me two hours and the thought
of being that far away from her just really scared me”
Ellie, aged 20
“ When I talk to my friends about the future they always think about
living alone or with a partner, and whereas I’m always thinking
we’ve got to have a room downstairs and a toilet downstairs”
Daljit ,aged 21
Friendships and leisure
A third were able to participate in activities or hobbies of some kind either
within or outside the home
A quarter of the participants were supporting other young carers
Two thirds were not participating in any sporting activity
Caring responsibilities constrained their wish for more of a social life
Limited transport restricts and isolates carers in rural locations
Participation in leisure activities & holidays is on a continuum
Friends are very important and often they chosen carefully
‘Burden of their maturity’ can inhibit their ability to make friends
Some find it hard to have friends back to their home
School as ‘sanctuary’ or ‘misery’
Supportive and non-supportive teachers
Attendance : affected or unaffected
Attainment – some do very well and achieve good GCSEs/A levels,
others leave with no or few qualifications due to learning difficulties,
poor attendance and lack of appropriate support
School: participant perspectives
“They didn’t understand, they really didn’t take into consideration at all that
at home I didn’t have time to do homework or anything, and so like
most lunchtimes I’d be in like detention or something, doing my
homework, because when I got home it would be like, oh well need to
make tea, need to do all the washing up and do all the cleaning… ”.
Natalie, aged 19
“I got set on fire I did because I was bullied about being different, being
overweight, where I was staying in 24/7 looking after my parents, I’d
always be eating snacks, chocolates and all that…Lots of people think
because you’re a guy why would you be happy cleaning, not going out,
not drinking, being happy, their automatic assumption is you’re either
bent or just weird, let’s beat him up. The bullying side of it was
Peter, aged 19
Further and higher education
College/training provider
More positive experiences of education at FE colleges – more understanding
and flexible, adult-orientated, availability of student services/counselling,
less bullying, important location for socialising
But instances of drop-out, problems with training/course provider, and basic
level qualifications being attained
Caring often affects the choice of university and ability to leave home
Financial struggle to get to university or remain there
Subject choice affected by caring to some extent – replicate, making a
difference or non-care related
Less awareness of students as carers and therefore ‘hidden’
No specific carers support provide by universities but can tap into student
support services
Quality of student life is quite different for those that are carers
Worry and caring at a distance continue for those living away from home
FE: participant perspectives
“Well the course co-ordinator, she was fantastic with me, she changed into
like my second mum kind of thing..I don’t know what I would have done
without her really…I didn’t have any money and they would give me
money each week so that I could get my food and they made sure I ate
when I was in college, just things like that and if I had any sort of
problems whatsoever”
Becky, aged 18
“ They treat you like an adult, you’re not some little kid that’s dashing
around.. They’re far more understanding..”
Natalie, aged 19
Employment and careers
One quarter were not in employment, education or training (NEET)
3 were in full-time employment but low income jobs
Remainder were in further or higher education
A third had recently or were currently doing part-time work
Mixed experience of career support either at school or college but
in some cases young adult carers were well supported by
specialist carers transition workers
Some careers staff were identifying and referring on young adult
carers for carers support services
Strong evidence of poverty and social exclusion
Evidence of some young adult carers subsidising the family income
EMA could be withdrawn if attendance reduced
Many young adult carers were unable to get part-time work
No participants were in receipt of Carer’s Allowance
Lacked preparation to understand the ‘benefits maze’
The knowledge gap
Unconfident about their rights and entitlements to services or benefits
Lacked information about the care receiver’s health condition and
complained that other professionals don’t involve or listen to them
Services beyond a young carers service?
Two thirds were unaware of their right to a carer’s assessment
Staff attitude may affect promotion and take-up of carers assessments
Models of service delivery
• Young carers projects for those aged 16-17
• Emerging models for young adult carers aged 18-24
Emerging models of service provision
for young adult carers aged 18-24
Sole young carer focus
‘keep in touch’
Focused young carer provision
‘teenage transition support’
Volunteering for the service
‘helping hand’
16/18 plus service
‘specialist worker’
Partnership approach
‘shared responsibility’
Adult carers services
‘adult service responsibility’
Ad hoc
‘pick n mix’
Adult carers centres
8 out of 13 carers centres had contact with young adult carers
although numbers were small and contacts brief
Barriers to engagement:
• Funding constraints
• Service level agreements
• Lack of self-referrals
• Staff felt ill-equipped to work with young adults and their issues
• A lack of relationship, coordination and referral between
services for young carers and adult carers centres
Addressing the needs of young adult carers
Advice, information & guidance
Services and support
Education and training
Job seeking and flexible employment practices
Activities and peer support
1. Needs: advice, information & guidance
 Information about money, benefits,
grants, carers assessments and
services available for carers
 Information about services available
for the person being supported
 Information and guidance about the
medical condition and health needs
of person they support
 Information and advice about the
carer’s own health and keeping well
 Managing caring tasks safely
 Parenting advice and support
2. Needs: services & support
 Services that support young adult carers
need as carers
 Counselling and/or relaxation therapies
to build resilience and cope with stress
 Breaks from caring
 Carers assessments
 Emergency planning
 Adequate & affordable transport
 Suitable housing, aids and adaptations
3. Needs: education & training
 Greater awareness, recognition and support for carers in
schools, colleges and universities
 Early intervention to avoid inappropriate levels of caring and
optimum outcomes including academic achievement
 Robust anti-bullying strategies
 Advice and assistance about opportunities in further and higher
education and how to obtain necessary financial assistance
 Help to balance the demands of caregiving and further
education and ongoing learning
4. Job seeking and flexible employment
 Careers advice up to 24 years - sensitive to the implications of
caring but not reinforcing caring as the only career option
 Information and advice about flexible training opportunities
 Employment-seeking assistance: job search, interview skills,
CVs, confidence building
 Carer-friendly employment practices and support in the
5. Needs: activities & peer support
 Activities available locally for
leisure and wider participation
 Affordable/subsidised activities
to promote health, well-being
and inclusion
 Opportunities to meet other
young adult carers
 Opportunities for accessing
information, advice and guidance
and social networking –
Commission, design and deliver services to achieve relevant
outcomes: ECM or carers strategy
Participation of young adult carers in the the design/delivery of
services they require
Universal and specialist service providers need to be more
alert to meeting the specific needs of young adult carers
Better integration between services for young carers and adult
Promotion of their legal rights
Integration within local authority carers strategy
Identify the implications for practice and service delivery drawing
on the findings from this research study and your own experience
in relation to:
Identification and engagement of young adult carers (16-24)
Preparation for transitions
Service provision
Working with other services/agencies
Contact details:
Fiona Becker
Email: [email protected]
Tel: 07977 146230

Listening to Children, Meeting Their Needs