January 2013
‘We are managing our own lives . . . ’: Life transitions and care in sibling-headed households affected by AIDS in Tanzania and Uganda
Research by Ruth Evans, University of Reading
AIDS and child-headed households
Since the AIDS epidemic spread in the 1980s, East and Southern Africa has witnessed the emergence of child- and youth-headed households.
Although most orphaned children are cared for by extended family members, the phenomenon of child-headed households represents a significant change in conventional patterns of care for orphaned children.
It was recently estimated that an estimated 12 per cent of Tanzania’s 1.1 million ‘most vulnerable’ children lived in child-headed households.
In Tanzania and Uganda, as in many African contexts, young people often have considerable responsibilities for other family members, such as working to earn an income for the family, looking after their younger brothers and sisters and taking charge of a household in the occasional absence of grownups.
The situation of orphaned children living independently in child-headed households without a co-resident adult differs from usual expectations of children's roles within the family.
Child-headed households are regarded as a problem predominantly because of the lack of adult supervision and the ‘parenting’ responsibilities that some children have to take on. This can impact negatively both on the young people providing care and the children that they are caring for.
For these children, being young may be characterised by economic and social uncertainty – by continual efforts to make a respectable living and by needing to carefully manage social networks.
About the research
This research aims to learn more about how young people manage sibling caring responsibilities following their parent’s death. It is focused on young people caring for their siblings who live alone without a parent or adult relative. The research was undertaken in Tanzanian and Ugandan communities (both rural and urban) affected by AIDS.
Widespread poverty and the scale of the AIDS epidemic in the communities being researched meant that many relatives were no longer able to support orphaned children.
It was therefore not uncommon for a mother or father to express their wish for the children to stay together and care for each other after their death. Young people felt a strong sense of commitment to respect their wishes and fulfill cultural expectations of their caring role.
Due to the stresses of adapting to new routines and relationships with foster relatives, project workers thought that child-headed households were preferable to foster households if they were provided with adequate support.
The events surrounding a parent’s death and the assumption of care for their siblings represented a major life transition for most young people interviewed. Most of the children started caring for their siblings when they were aged 12-15 years old.
However, several young people started caring when their parent became ill. It was then that they began to look after their siblings and gradually provide more intensive nursing care as their parent’s health deteriorated. Following their parent’s death, their caring responsibilities changed and they spent more time looking after their siblings and themselves, earning a living and managing the household.
Kadogo, a 14-year-old Tanzanian girl who cared for her three younger siblings
“[After our father died, our relatives] said that ‘we cannot look after you because we have our own children as well. So you have to decide one thing, do you want us to look after you or you look after yourself?’ We said that we cannot leave our farm and house, our father had built us a house only one year ago and it has never been damaged. So we said let us keep our house, because it was a good house, and our farm. We decided to look after ourselves.”
Many of those caring for their siblings found it very difficult at first and experienced extreme hardship, while they were grieving and coming to terms with their parent’s death.
However, as the eldest sibling, they realised that they needed to try to earn money to meet their basic needs. They also need to learn to cook, budget and manage the household.
Some young people said that their parents had helped to prepare them for heading the household by giving them advice before they died. Others commented on how NGO workers and their peers in similar situations had provided advice, encouragement and life skills training, as well as material support. This all helped to facilitate their transition to looking after their siblings. Skills training included:
In making a home for themselves, young people followed conventional gender norms in the allocation of household chores. For example, young women heading households reported spending more time each week doing domestic duties and managing the household.
Meanwhile, young men heading households tended to share the care work more often and allocated household chores to younger siblings (particularly girls). However, they did spend many more hours than young women each week engaging in paid work and other income-generation activities to support the family financially.
Siblings identified close relationships and freedom to make decisions as positive aspects of living together. However, they also experienced poverty, a lack of basic needs and loneliness as a result of their situation.
Several young people highlighted the difficult ‘emotion work’ involved in sibling care, as they struggled to provide for their younger siblings’ material and emotional needs. Meanwhile, their own emotional needs for love, support and guidance were often unnoticed.
Juma from Tanzania explained:
“You see, us, we didn’t want to be adults, but we had to be adults because of the things that happened with our parents. We would still like to be able to do the things we used to. To be able to play and laugh with our friends but my life is really a struggle and when I need help, I don’t have an adult who I can ask. It’s not as though I wanted to live on my own. Any problems that you have, you have to know how to deal with them. I have to be like both mother and father. So in this way I am an adult.
Some young people enjoyed their position of authority within the household and were proud of their ‘adult’ responsibilities as the head of the family. However, young people heading households often found that they had low social status within the community and were not treated as ‘adults’ in decision-making processes.
Some young people feared that the house and farm they had inherited from their parents might be taken by relatives or neighbours. Many were also vulnerable to verbal abuse, physical violence and sexual harassment and sought protection from community leaders, neighbours and NGO staff.
Furthermore, young women often have less inheritance rights than their younger male siblings, due to gender inequalities associated with access to land and property. When they marry, orphaned girls heading sibling households are usually expected to move to their husband’s household, which may make it more difficult for them to continue looking after their younger siblings.
Looking after their siblings may restrict the future transitions of orphaned young people. This includes not being able to take up opportunities to pursue employment or secondary or further education and training by migrating to urban areas, or (especially for young women) delaying marriage.
When young people reached the age of 18, young people emphasised their vulnerability as children lacking adult supervision rather than demonstrating their competencies as youth who were ‘managing their own lives’, in order to continue to access support and resources from NGOs and members of the community.
Indeed, the global understanding of orphanhood, based on strict age definitions of childhood, has little to say about older young people’s needs for support – particularly those aged over 18.
Households headed by young people aged 18 or over are often marginalised, since they often no longer receive assistance but also struggle to care for their siblings, to receive education and training and to earn a living to support themselves and their family.
The research with young people in Tanzania and Uganda suggests that parental death due to AIDS-related illness was often associated with the transition into sibling care. This time was experienced as a major disruption with negative material and emotional impacts.
However, young people's accounts also suggest that the transition into sibling care could also be associated with a reaffirmation of their caring role and a strengthening of sibling ties within the social space of the household.
The transition to sibling care and the formation of sibling-headed households was influenced by a complex range of factors, including:
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Sibling birth order
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Changes in household composition and migration
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Cultural expectations of sibling care and parents' wishes for siblings to stay together
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Access to resources (from NGOs and within the extended family and community) and assets, such as farmland and property
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The need to resist adult exploitation and abuse of siblings' inheritance rights
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The desire to develop a more autonomous space living with siblings in their inherited parental home
Despite young people demonstrating their competencies by caring for their siblings and living independently without adult supervision, this rarely translated into a higher social status or greater involvement in decision-making processes as equals to adults in the community.
Young people developed close relationships between siblings and developed a collective sense of empowerment within their own household and in safe spaces facilitated by NGOs. However, young people's ability to act and feel in control of their lives was often undermined because of:
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The constraints of poverty
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Unequal power relations between men and women and between different generations
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The emotional impacts of caring for siblings in the context of orphanhood
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Sstigmatisation and exclusion within the community.
This research was supported by the Royal Geographical Society (with the Institute of British Geographers) with a Small Research Grant and by the University of Reading.
Semi-structured interviews were conducted with 14 young people (nine girls, five boys, aged 12–23) from 11 sibling-headed households. This small sample of interview participants was identified through non-governmental organisations (NGOs) that work to support orphans and vulnerable children. 15 project workers – from five NGOs that support the young people – were also interviewed.
Focus groups were conducted with a further 15 young people and five community leaders and NGO staff in Tanzania. In Tanzania, interviews and focus groups were conducted in the national language of Kiswahili. In Uganda, interviews were carried out in English, with interpretation into the Luganda language provided by NGO workers – although some young people did speak English.
One year later, participatory feedback workshops were held with 33 young people (15 of whom headed households and 18 of whom were their younger siblings) and 39 community leaders and NGO staff in the three main research locations.
The workshops aimed to involve marginalised groups – such as children affected by AIDS – in identifying priorities for action to assist children in similar situations in the future. Groups verified initial findings and identified key messages for community members, NGO staff and policymakers and professionals working with children and families.
Young people's messages were presented in workshops in their local communities using creative methods such as art posters, video-recorded drama and music performances.
AIDS impacts heavily on individuals, families and communities. Using the evidence presented in this article, develop a community-wide plan to be implemented in the Tanzanian and Ugandan towns in which this research took place.
The plan should focus on improving one of the following negative factors:
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The constraints of poverty
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Unequal power relations between men and women and between different generations
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The emotional impacts of caring for siblings in the context of orphanhood
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Stigmatisation and exclusion within the community
You should consider the role of different players including, but not limited to: NGOs, community leaders, the Church, families of orphans, businesses, and local and national government. In devising the plan, you should adopt one of these roles yourself.
You might want to present your plan as a presentation, A3 poster or two sides of typed A4.
Global health in the 21st century: Hear from experts about the challenges of global health in this series of talks, interviews and fact pages.
Wealth and health of nations (Gapminder): This interactive chart visualises the correlation between life expectancy and income per person since 1800. Customisable axis allow investigation of other health factors including the prevalence of AIDS.
Read Ruth's article about this topic (download below)