African children who care for parents with Aids are not passive victims or burdens to their families. They are resourceful and play a key role in the response to the Aids epidemic
Over the past decade, many countries in sub-Saharan Africa have seen HIV incidence fall by more than 25%, and almost 40% of those eligible for treatment are now able to access life-saving medicines. However, despite this progress, millions of children throughout the region remain at the frontline, responding to the devastating impact of Aids by caring for the adults in their lives.
Although there are no statistics to document the extent of young carers in sub-Saharan Africa, a growing body of research suggests that children living in households affected by Aids take on significant caring roles and responsibilities as their parents slowly succumb, or as their grandparents age.
I met 15-year-old Carolyn in the Bondo District of western Kenya, while studying the coping strategies of children. Carolyn became a carer at the age of seven, when she helped her mother care for her bedridden father, died a year later. It was not long before Carolyn's mother started to get sick, and at the age of 10 Carolyn was the primary carer of her mother and little sister.
Carolyn did the cooking and spoon-fed her mother. She washed and massaged her, clothed her, helped her to the toilet and administered medication. In addition to her nursing care, Carolyn kept the household running by growing vegetables in the garden, fetching water from the local pond and seeking support from neighbours. She managed to stay in school during most of her time as a carer.
However, she had to drop out of school temporarily when her mother was admitted to hospital. Due to a shortage of nursing staff, Carolyn had to stay with her mother in the hospital. Her mother died in hospital, and she and her sister moved in with her grandmother, who, because of old age, also needed care and support. Carolyn cared for her grandmother for two years, after which she moved in with her aunt who now acts as a foster parent to and her sister.
Carolyn's story is far from unique. Her experiences are representative of so many boys and girls living in Aids-affected communities in Africa. Although community health workers may come and visit people with Aids once or twice a week, it is the children of the household, often with support from neighbours or extended family members, who provide care on a daily basis.
It is very easy to get alarmed by stories like Carolyn's. Nevertheless, I and other researchers from the Institute of Social Psychology at the London School of Economics and WVP Kenya, a local NGO in western Kenya, have found that children like Carolyn cope remarkably well despite the hardships they may encounter.
Using methods to involve children in the research process – such as photography, drawing and essay writing – we found that many young carers have the ability to mobilise social resources quite effectively, not only to get help from neighbours, church groups, friends and extended family, but also to negotiate access to assets such as land for farming, fruit trees, poultry and other income-generating resources.
Many of the children also identify the benefits of being a young carer and take great pride in their emotional maturity and the life skills they gain through their caring. They value the close and loving relationships that develop between them and the people they care for, and describe themselves as strong, mature and responsible children. Their contribution to community life does not go unrecognised, and earns them the respect of adults. This allows them to see themselves as "good children".
Our research points to the struggles and coping strategies of young carers in sub-Saharan Africa. One of the more important lessons was the significance of including children's voices in research. By incorporating their perspectives, a different story emerged – one that highlighted children's contribution to dealing with the Aids epidemic and their ability to cope with hardship, dismissing the idea that they are passive victims and a burden to their families.
Some people may argue that a focus on coping hides the grim reality of living in a poor and Aids-affected household, and serves as a barrier to the mobilisation of support for this group of vulnerable children. However, incorporating children's voices and learning how they respond to the Aids epidemic from them seems to be the only way in which we can develop support that can help their coping and wellbeing. We need to acknowledge that African children are resourceful and play a key role in the response to Aids.
Morten Skovdal is a research fellow at the Institute of Social Psychology, London School of Economics
