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Loughborough University
Leicestershire, UK
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The View - Autumn / Winter 2007

Girl washing up (posed by model)

Pictures of caring

Washing, tidying up and vacuuming – all in a day’s work for 15 year old Emma, one of thousands of children and young people in the UK who are helping to look after a relative at home. Now a new study by Loughborough University’s Young Carers Research Group is helping more of Britain’s hidden carers to emerge from the shadows.

Emma likes listening to music. Her favourites are Pink, Christina Aguilera and Avril Lavigne. In many respects she’s like every other teenager who loves going into town or to the park with her friends and reading magazines. But unlike most of her contemporaries, Emma spends much of her time at home looking after her mum.

Girl vacuuming (posed by model)“She’s got epilepsy, schizophrenia and arthritis – and gall stones too at the moment,” Emma says matter-of-factly. “In the mornings, before I go to school I give her her medication or sometimes I make her breakfast. Then when I get home I’ll help out with the housework, doing the washing up, vacuuming, tidying up, that sort of thing.”

Emma is just one of an estimated 175,000 young carers in the UK – children or young people helping to provide care in the family home for a relative, usually a parent, who is sick or disabled. In reality that figure could be much higher however. Evidence shows that many more families don’t receive formal support services and as a result aren’t captured in official statistics. Some just don’t want to ask for help, preferring to keep it within the family. Others fear intervention from social services and that their children may be taken into care if the family is seen to be struggling.

Since the early nineties there has been increasing Government and public attention focused on the needs of young carers. Several research studies have highlighted the nature and extent of children’s caring duties for parents with physical disabilities or chronic health problems. But until recently little was known about young carers’ experiences of looking after parents with mental health problems.

A study in 2003 by the Young Carers Research Group (YCRG) was the first to examine the issue, from the perspectives of the children themselves, their mentally ill parents and the key professionals involved in the delivery of services. Now the group has completed a new study that is helping to provide fresh insight into the lives of these youngsters, who are estimated to number anywhere between 6,000 and 17,000.

“For the first study four years ago we interviewed young carers, which gave us a good idea of the types of tasks they carry out, the impact caring has on their lives and how they cope,” says Jo Aldridge, Director of the YCRG. “But we realised that that way of gathering information wasn’t adequate or appropriate for every child, particularly those who felt unable or unwilling to talk about their situation in interviews. We were potentially missing the voices of those most in need of recognition, help and support.

“We’d used photographic methods in another study at the University, which had proved very successful and so we decided to try using it for this, and it worked extremely well. It’s allowed the children involved to give us a visual insight into their lives and has enabled us to uncover aspects of young caring that previous studies haven’t been able to identify.”

Founded in 1992, the YCRG is the country’s foremost research group on the subject of young carers. Its work is widely recognised both in the UK and internationally and was integral to the award of the University’s fifth Queen’s Anniversary Prize for Higher and Further Education in 2005.

For this latest study, which was funded by the Economic and Social Research Council (ESRC), the researchers gave disposable cameras to 16 young carers to allow them to create their own photo diaries and show pictorially what it’s like to live with, and care for, a parent with a mental illness.

Washing up, preparing food and family pets all feature in the photos, which, Jo says, the children enjoyed taking. “They loved being able to show us their lives rather than just talk about them.”

Pictures of caring

The researchers also found the children liked having an active role in the research process and being in charge of collecting their own data – an approach that is much more in line with recent Government thinking and policy on children’s inclusion, participation and consulting with them. “

The study shows that children are competent social agents, not just as carers but as children with stories to tell about their lives. They’ve been able to give us a more detailed personal insight, through their own eyes, showing us the ways in which they cope with their lives as carers and how they negotiate caring with school and friends, for example,” says Jo.

Research has revealed that young carers carry out a variety of jobs. Washing up, cleaning, paying the bills and shopping are all common responsibilities. But some also have to undertake more intimate tasks, such as administering medicines, bathing and toileting their parents. Although the vast majority of young carers want to look after their parent or relative, it undoubtedly has an impact on their lives. Health, well-being, even employment prospects can all be affected. Their social lives are another obvious sacrifice. Hours a week devoted to caring means there’s less time to do the things other children and teenagers do. Their childhood is often cut short as they are forced to mature before their time and step into the world of adult responsibility.

A large proportion of Emma’s time in the evenings and at weekends, around ten hours a week, is spent looking after her mum, but she doesn’t mind.

“I’m used to it,” she says. “I’ve been looking after my mum since I was six or seven. My brother looks after her as well.”

Time constraints are often only partly the issue though. Some carers feel guilty about going out and leaving their mum or dad, or sometimes the parent doesn’t want their child to leave them alone at home. Friends can be problematic too, as they often have no concept of what being a carer involves and don’t appreciate the amount of time it takes to look after someone. For some young carers making and keeping friends can be hard, but Emma’s one of the luckier ones.

“All my friends know that I look after my mum, and my close friends understand about it, which is good. My other friends don’t really understand it, but they do know.”

Caring often has a significant impact on the children’s education too. Poor attendance, lateness, difficulties in doing homework and lack of concentration are some of the common problems that have been revealed by other studies. Teachers and school staff are often unaware that a child has caring responsibilities, and it’s only after persistent absence or regular lateness that the child’s difficulties are brought to their attention. Even then support isn’t always forthcoming. Earlier this year, the Department for Education and Skills issued updated guidance suggesting schools develop a policy on young carers and have a designated member of staff to look after their needs.

“Young carers don’t necessarily want to let their teachers know about their responsibilities at home,” explains Jo. “We need to make sure that staff and education professionals are able to pick up on noticeable stresses and strains on children who care, that they can recognise young carers and offer the necessary help and support.”

This latest YCRG study shows that the children have developed a variety of ways of coping with difficult and painful circumstances in their lives. Listening to music, painting and caring for family pets are among the diversionary tactics used. The carers also develop two-tier friendships, with ‘inner circle’ friends being those who know about their caring responsibilities, and friends in the ‘outer circle’ being those who aren’t aware. They carefully negotiate their friendships and other relationships based on their perceptions of trustworthiness, which often equates with how long they’ve known the person.

“It’s true that these children’s lives are often more constrained than their peers who don’t have to care for an ill parent. But the role of friends, close parent-child relationships, home based activities, faith and even family pets all need careful consideration when addressing their needs and helping them to cope with parental illness.”

Previous studies by the YCRG have identified having someone to talk to as one of the key requirements for young carers.

“These children can find it difficult to talk about their situation, but the relative ease with which they’ve opened up during our interviews with them for previous studies would suggest that few people had ever asked them or encouraged them to talk about their experiences or their needs,” Jo says.

“In the past, support and information has been directed at the care receiver, which can reinforce a child’s reluctance to talk about their role as a carer or about their needs. But these children need information as well, about the illness or disability the person they’re looking after has, about practical aspects of caring such as lifting techniques, and also about the formal support services available to them. They need reassurance that their skills are effective.”

When Emma needs advice she’s able to call on Action for Young Carers, a support project established in 1996 by the Carers Federation charity. The project offers one-to-one or group support, as well as activity breaks, which enable the carers to meet others in similar situations and, importantly, allow them to be children and young people again.

“There’s a number I can call if I ever need help or advice,” says Emma. “And sometimes they write to us, asking if I want to go for a respite break. In the past we’ve been to farms and nature parks. This year we’re going on a PGL adventure holiday – there’ll be loads of activities there, like wall climbing. It’s great because I make new friends.”

So what are the key messages to emerge from the study? First and foremost, that children can and do cope with parental mental illness and caring, and that they want recognition for it.

“One of the main battles young carers face is lack of awareness,” Jo explains. “They just want people to take notice, and for the Government and policy makers in particular to see what it’s like to be a young carer and how they cope with their lives.”

The situation has improved over the years, thanks largely to the research being undertaken by the YCRG and campaign work by organisations such as the Children’s Society and the Princess Royal Trust for Carers. Working together they have been able to influence directly the development of law, policy and good practice in this country, with YCRG researchers often asked to sit on Government committees to help inform policy.

“When we first started, young carers weren’t included in Government policy – they are now. And there were just two young carers projects, now there are around 150, all of which do fantastic work, not just with the carers but with the families as a whole, befriending, providing respite care, for example. But there still aren’t enough of these projects and, as you’d expect, funding is always a problem.”

Despite their success, the YCRG suggest that more still needs to be done, particularly about the issue of children administering medication to parents.

“It really does need to be addressed as a matter of some urgency. It’s never really been tackled or remedied by appropriate health or social care interventions. There are clearly serious implications for both children and parents when children take responsibility for giving medication to adults who have serious mental health problems.”

Now the YCRG are turning their attention abroad, with the team having been asked to advise authorities in North America and Australia about the young carers issue.

“It’s really just getting started over there,” explains Jo, “and they’re using our work to help raise the profile of young carers, what they do and what they need. We have a lot of research evidence, case studies and examples of best practice we can share with them.”

“It’s just good to see when our research has a really positive outcome.”

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