Study highlights shared burden of young carers in the UK and Tanzania

Sep 24 2007

It's not just distance that separates the children of Tanzania and the UK. Their lifestyles, aspirations and access to employment, education and healthcare are worlds apart.

But if you are a young person looking after a parent or relative with HIV or AIDS, you might find that the differences are far less pronounced. A new study, led by Professor Saul Becker, Director of Research, and Dr Ruth Evans, both of the School of Sociology and Social Policy at the University of Nottingham, has found startling similarities between children who care for relatives in the UK and Tanzania. The research suggests that the most vulnerable often slip through the gaps of services even when — as in the UK — there are established support and healthcare systems available to them.

Despite very different socio-economic, cultural and policy contexts, children caring for parents or relatives with HIV or AIDS in both Tanzania and the UK share many caring responsibilities, needs and aspirations. Children in both countries routinely perform a range of caring tasks, including:

• Household chores — cooking, cleaning, laundry, shopping
• Healthcare — reminding the parent or relative to take medication, caring for them in and outside hospital, assisting with mobility, preparing special food
• Personal care — washing and bathing, assisting parents to eat, dress and use the toilet
• Childcare — looking after siblings
• Emotional and practical support — talking to and comforting the parent or relative, helping them to remember appointments and pay bills

Professor Becker said: “The findings are challenging for policy makers and service providers in the sense that there are huge similarities in the experiences of young carers in the UK and developing countries. In the UK we have an established and respected national healthcare system, but the stigma attached to HIV and AIDS and the difficulty in finding and then accessing appropriate services means that young carers in the UK and Tanzania have far more in common than we previously might have suspected.”

The study found that in addition to these shared responsibilities, young carers living in poverty in Tanzania had the added responsibility of income generation. This ranged from begging and casual farm work to domestic work or working in a shop. They also had extra household chores, such as fetching water, tending livestock and cultivating crops.

The study, Hidden young carers: the experience, needs and resilience of children caring for parents/relatives with HIV/AIDS in Tanzania and the UK, explored unpaid care work by young people in the two countries. A total of 93 people — including children under 18 and young adults aged 18 to 24 that were carers, their parents and relatives with HIV or AIDS and service providers — were interviewed. They came from rural and urban locations across four regions in Tanzania and in five English towns and cities. The study was funded by the Economic and Social Research Council.

All participants were interviewed in depth, and many of the young carers also took part in participatory child-friendly research approaches — including life story books, with sentence completion exercises, daily diaries and spaces for drawing, and photography. These books and images were then used to supplement the interviews and gain a unique insight into the young carer's everyday life, experiences, feelings and aspirations for the future.

“Interviews are a trusted and effective method of getting very sensitive information about the situation of young carers and their families from all those involved,” Dr Evans added. “But they can often be difficult, particularly for children who are already in a stressful situation. By using the photographs and life story books we can look at what's important for these young people in their own terms, and at the way they deal with adversity in their everyday life, as well as how they cope with it.

“Participants were given cameras to take pictures of items, people or anything that was important to them, and many of these showed family and friends — illustrating the support networks that they call upon to help them deal with their role as a carer.”

The study also revealed the positive aspects of what would generally be perceived as a negative situation for a young person to grow up in. From increased maturity, confidence and coping skills, to strong bonds with the parent or relative being cared for, other family, community and religious groups.

“Previous studies have concentrated on the negative aspects of young carers' lives,” said Professor Becker. “This one highlights the protective factors. One of the strongest here is the relationship that the young carer has with the parent or relative. Parents are giving guidance, support, strong moral leadership and discipline — all positive factors which help to develop children's resilience.”

It is hoped that these findings will inform future research and policy developments aimed at improving the lives of young carers and their parents and relatives internationally. The interview transcripts from the study and life story books have now been deposited in the UK Data Archive, so that other researchers can draw on the original data for their own analysis.

The study outlines the need for greater recognition of children's caring roles within families, the need for greater awareness and knowledge of HIV and AIDS across societies and the promotion of resilience in families where young people are carers. These protective factors operate on a number of different levels, including that of the individual child, the household, community, socio-cultural and policy levels. Approaches that promote resilience include respite breaks, development of life skills in the young carers, practical and emotional support for parents with HIV or AIDS, social activities with other young people in similar situations, as well as developing formal and informal support networks within families, schools and the wider community.

An executive summary, Hidden young carers: the experience, needs and resilience of children caring for parents/relatives with HIV and AIDS in Tanzania and the UK is available from Professor Becker. A book, Children caring for parents with HIV and Aids: global issues and policy responses, will be published in late 2008.