Open Eye: Children who; care: their stories are different

'I don't go out in the evenings 'cos my Dad would be at work and the boys would be on their own'

While children in care may attract the headlines, OU researchers have been turning their attention to another group whose needs are often ignored: children who care.

The lives of children who look after others are highlighted in a new study by the University's Health and Social Welfare unit: Young Carers: a Different Story of Youth.

There are at least 10,000 children in Britain under 18 acting as primary carers - some estimates suggest the number could be 40,000 or even more. Often they they are the main carer for a sick, or disabled relative. Many more share the caring role with others.

The researchers found child carers demonstrating maturity and competence in coping with the day-to-day responsibilities of caring and dealing with emergency situations.

But because they do not fit straightforwardly into the categories young people society is accustomed to, their needs are generally ignored, even by the health, social care and education professionals who are the 'official' carers in our society.

"Their accounts of caring tell a very different story about youth. The real-life worlds of young carers appear to be far removed from the popular imagery about young people that is frequently conjured up in the media. Young carers play a vital role in supporting and sustaining families that have to cope with the day-to-day outcomes of community care legislation," says Dr Stan Tucker.

Researchers interviewed 24 carers aged 10 - 21. The ages of those being cared for was 7 - 78 years. The vast majority were caring for parents, brothers or sisters.

Caring skills

Children's caring skills are generally gained by trial and error. Young carers also have to cope with emergency situations - examples include breathing difficulties,faulty medical equipment and supporting parents who had fallen and injured themselves.

Coping with school

The maturity and personal organisation skills of many young carers is reflected in their ability to cope with the pressure of school. Although education did not appear to suffer unduly from caring, other research has suggested that some carers are losing significant amounts of time in school.

Sometimes young carers attend school exhausted - particularly when caring duties have denied them a restful night's sleep. For nearly half the children involved, the start of school signalled the end of the first stage of caring: "I get my brothers up, make sure they are wearing their uniforms... make sure they've got their money... and go to school leaving the house tidy."

And there is often the need to return home speedily after school has finished: "You can't really stay for clubs and different activities, because you're needed at home... I have to get home to dish the tea up."

Girls v. boys

Where there were instances of boys and girls living in the same family who might share the caring role, it generally falls to the girl to provide the bulk of that care.

Girls were frequently seen as "mother substitutes" and expected to perform tasks associated with that role: providers of care and support, resolvers of problems and difficulties and day-to-day family management. Boys, on the other hand, are expected to be "the man of the house" - disciplining brothers and sisters and responding positively to crises.

Social life

Caring frequently takes precedence over social arrangements and activities. Those with working parents need to give support when their parents are out. Respite for the children tends to come in the form of a few hours snatched here and there. Girls appear to have a more restricted social life than boys, who seem to have less pressure placed on them to respond in such a rigid way to family demands: "When Dad gets up he's got about an hour to two hours before he goes out - so I go out."

"I don't go out in the evenings 'cos my Dad would be at work and the boys would be on their own."

Emotional effects

Although most young carers appear reasonably happy, quite deep feelings of anger and resentment can also develop. For example, a number of the young people interviewed posed the question "Why me?"

The enormous strain on all those involved shows itself in frustration at not being able to go out unless outings are carefully planned; resentment towards the person being cared for - or other family members; feelings of being trapped; anxiety about leaving the cared-for person alone even when attending school.

Adults may also fell guilty or confused: "It's strange to be looked after by your daughter... it should be the other way round... It feels wrong when they have to make the decisions because you're feeling rough," said one mother.

Support

One of the major messages revealed by the research is that the roles and responsibilities of young carers frequently go unrecognised by welfare professionals. Young people do not normally feature in the assessments carried out by social workers.

Nursing staff fail to provide advice and information on how to carry out particular caring tasks, and the contribution of the young carer is frequently ignored in terms of its overall value in helping to sustain the family unit. In many instances, when a young person is willing to take on a caring role, it can mean that support services are offered on a limited basis, or withdrawn. This situation causes no small amount of frustration and anger in the young people involved. A group of young carers said: "A nurse came once and that was it... She didn't even talk to me."

"You are ignored - it's like you're not there... Nobody has ever said thanks you are doing really well... There is an assessment but I can't remember anyone asking what I think... nobody wants to know what I want."

Other agents who might also provide support to young carers appear largely unaware of, or unresponsive to, their needs.

Repercussions

Talking to former young carers, to see how caring has impacted on their later lives, the researchers found some disturbing messages. Caring, even when the duties and responsibilities have long ended, can still have a profound influence on how people see themselves, their hopes and ambitions for the future, and the ways in which life chances unfold.

The study concludes: "These findings raise much wider issues concerning the participation of children and young people in decision making. These young people find it difficult to assert their rights to equality of treatment and access to appropriate support. Yet they are called on to make a major contribution to family life.

"Perhaps it is the case that welfare professionals, who are all the time required to prioritise the use of scarce resources in both the public and voluntary sectors, tend to ignore the needs and aspirations of those individuals and groups who do not fit neatly into the dominant discourses of the 'troubled' and 'troublesome'.

"The demands and expectations of young carers are unlikely to disappear - particularly when the thrust of social policy continues to be directed towards the maintenance of caring within the private domain of the family," says the report.

At the very least, it suggests that young carers want a say in some of the decision-making processes that can have a direct bearing on their lives and access to resources that might offer much needed support.

"Those who work with young people, or meet them within various caring contexts, need to respond to this important message," the OU report concludes. The research team is currently working with Crossroads in Northern Ireland to find out about the experiences of young carers there - in an area of the country where attempts are now being made to meet the needs of this group of young people. The findings of their later research will be made available later in the year.