Research realities: The experiences and needs of young adult carers

The UK’s 290,000 young carers aged 16 to 24 often fall into the gap between adults’ and children’s services.
Researcher Alison Petch reports

The Research

Title: Young Adult Carers in the UK: experiences, needs and services for carers aged 16-24

Authors: Fiona Becker and Saul Becker

Affiliations: Fiona Becker is senior research fellow in the School of Sociology and Social Policy, University of Nottingham and senior consultant at the NSPCC. Saul Becker is professor, Young Carers International Research and Evaluation, University of Nottingham. The study was funded by the True Colours Trust and published by the Princess Royal Trust for Carers

Analysis

There are about 290,000 young adult carers between the ages of 16 and 24. The responsibilities of being a carer add an extra dimension to the challenges of transition to adulthood experienced during these years. Often, however, carers from this age group drift away from the services for younger carers but do not access those designed for adult carers.

This study looked at 2001 Census data, which provided an overview of the number of hours spent caring within this age group. Detailed accounts of individual experiences and service provision were gathered from surveys of 25 young carers projects, 13 adult carers services, five focus groups with 29 young carers aged 16 and 17, discussion with staff at the focus group sites, and interviews with 25 young adult carers aged from 18 to 24. Discussion focused in particular on how the aspirations of young adult carers are affected by their responsibilities, barriers to further education and training, issues of economic well-being and independence, factors that promote resilience, and optimum modes for delivering support. The study distinguishes between young carers aged 16-17, who are legally children and the responsibility of children’s services, and young adult carers aged 18-24, legally adults.

Young carers aged 16-17

The 2001 Census records just over 61,000 carers aged 16-17 in the UK, with one fifth caring for more than 20 hours a week and seven per cent for over 50 hours a week. Families often expected them to increase their caring responsibilities as they become older, in conflict with their own wish to get out more. Young carers had received diverse responses from school, some receiving recognition and support for their role, but others finding it unacknowledged or even penalised. Positive parental attitudes and encouragement influenced both attendance and achievement. Many reported poor advice regarding career choices or finding a job. Consideration of leaving home was complex, with the need for discussion in the family, and confidence that there would be alternative provision of support. Individuals were anxious that support they received from a young carers project would stop when they reached 18 they knew little about local provision for adult carers.

Young adult carers aged 18-24

The number of young adult carers is just under 230,000, a little over 5 per cent of the 18-24 age group. One quarter of young adult carers provide more than 20 hours of support each week 12 per cent are involved for more than 50 hours a week. In the study, just under two-thirds were providing emotional support “a lot of the time”, an area a lot found difficult just under a third were providing personal and intimate care “a lot of the time”. Just over one-third reported having “strained relationships” with those for whom they were caring.

Most young adult carers were unaware of the support that might be available for the person they cared for or how to get it. At the same time they reported increasing demands on their own time from education, work or personal relationships. As with younger carers, understanding and support from school staff could make a significant difference to engagement and achievement. Further education tended to be more flexible and supportive of caring roles, although some nonetheless had left college prematurely. Those at university either returned home at weekends and holidays to resume the caring role or continued caring throughout by living at home. None of those at university were aware of any specific carers support.

Young adult carers often felt they had little time for themselves. For friendships they sought out those they considered sympathetic, who would understand what they termed the “burden of their maturity”. Financial hardship was common for young adult carers they were based in families where illness, disability or substance misuse often led to poverty and social exclusion, while in addition their caring responsibilities often reduced their own earning capacity or led to them subsidising the needs of their parents. Almost one-quarter of the sample were not in employment, education or training.

Low confidence and lack of qualifications made it difficult to find a job, while for others combining caring and work did not seem feasible, especially if there were additional barriers such as transport. Emotional pressures and demands for care could make it particularly difficult to leave home. Others made the choice to stay to avoid the role being passed to siblings.

Not all the young adult carers in the study had benefited from a young carers service, despite some caring on a substantial basis for many years, with consequent impact on their schooling and emotional well-being. Young carers services are becoming increasingly aware of the gaps in support at the transition stage and a number of models of support provision are starting to emerge. Services supporting older adult carers considered it would be difficult to engage effectively with young adult carers.

Findings

As with other groups of unpaid carers, it is likely that for each young adult carer who is identified many more may remain hidden (Cavaye, 2006). Recent policy reports reinforce the need for the spotlight shone by this study. These include that from the Social Exclusion Unit (2005) on transitions for young adults with complex needs, the Cabinet strategy paper on Think Family, and the context of the National Carers Strategy (HM Government, 2008).

There is always a danger that a spotlight focuses on the detail rather than the general landscape. As with young carers more generally, a twin focus is necessary. On the one hand it is essential that individual carers and the people they support are able to access the services and assistance they require. As with support for many emerging groups, core elements include the provision of a resource base and effective dissemination of information. There should also be consideration of the extent to which support, particularly social and emotional, can be provided through the wider social capital within communities.

However, it is also important that we do not accept the role of young adult carers without question. Several of the case studies depict scenarios where major sacrifices are being made by the young person to provide support that might more appropriately be considered the remit of formal provision. The rights of the young person to their own life – with independence, well-being and choice – must be respected, even when this requires the substitution of formal support.

Alison Petch is director of Research in Practice for Adults

LINKS AND RESOURCES

The report can be downloaded from www.carers.org or www.saulbecker.co.uk. Hard copies can be purchased from alison.haigh@nottingham.ac.uk

• Becker S and Becker F (2008) Service Needs and Delivery Following the Onset of Caring Amongst Children and Young Adults: evidence-based review, Commission for Rural Communities

• Cavaye J (2006) Hidden Carers, Dunedin Academic Press

• Department of Health (2008) Carers at the Heart of the 21st-Century Families and Communities

• Social Exclusion Task Force (2007) Reaching Out: Think Family, Cabinet Office

• Social Exclusion Unit (2005) Transitions: Young Adults with Complex Lives – a social exclusion unit final report, Office of the Deputy Prime Minister