Children as Carers: How caring for families affects children’s well-being Lesley Holst Save the Children December 5, 2011 OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Background OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Background 4 case studies: Angola, Nigeria, Uganda, Zimbabwe Innovative child-led research. Rationale: Burden of care is increasingly falling on the shoulders of children. Little information available about the specific challenges faced by child carers Limited understanding about the gender expectations on boys and girls in caring roles Few policies and programmes are designed to meet their needs and rights. OWN, SCALE-UP & SUSTAIN

Child-led research OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Child-led research Purposive sample of 12 children in each country, trained to conduct research The 12 then interviewed two to three other child carers in their area A total of 124 children (61 girls and 63 boys) participated in the four countries Documented the results using cameras and drawings Second workshop conducted to present their findings Researchers applied the Save the Children “Child Safeguarding – Safe Child Participation Policy Guidelines OWN, SCALE-UP & SUSTAIN

Who are child carers? OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Who are child carers? Living with HIV-infected parents: chronic and debilitating illness; some close to death. Living with and caring for increasingly frail grandparents; shift of roles. Heading households and caring for younger siblings OWN, SCALE-UP & SUSTAIN

Findings: OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Findings: Children cared for many people: adults and many children and repeatedly. “ I have problems of looking after my grandparents and my sick mother. There are ten of us children too. My youngest sister is also sick.” (17 year old girl in Uganda) “ My mother and my father passed away. I looked after my father with my mother and then my mother and then my sister came home and she was sick too. She passed away. Now I look after my little sister and brother and my aunt’s child. I also look after my great grandmother and my grandfather and grandmother.” (Girl, 14 Zimbabwe) OWN, SCALE-UP & SUSTAIN

Boys and Girls care OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Boys and Girls care During the research, both boys and girls were identified as carers. “Boys were carers as often as girls” “Boys and girls are caring. If you are the eldest then you must look after the young ones. If you are the only one there then you look for your grandmother – boy or girl. I am a boy, but I look after my father who is sick and my little brother, and when my uncle comes home, him too sometimes.” (Boys, Nigeria) OWN, SCALE-UP & SUSTAIN

Economic responsibility The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Economic responsibility Child carers defined their identity as a child who worked very hard to ensure the economic livelihood of the family (food) Caring for the sick was secondary Caring for the sick place an “additional financial burden” “Sometimes at the health desk they give you a prescription for the child, but there are no drugs. You get the prescription and then you have to go and buy the drugs yourself. I have to do small jobs to earn money to pay for the drugs which we are going to buy.” (Girl 13, Angola) OWN, SCALE-UP & SUSTAIN

Caring responsibilities The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Caring responsibilities Concerns about caring for sick properly and contracting HIV “There are some people who come to talk about HIV/AIDS, they just move around and talk and then go away. Nobody has shown me how to care for HIV person.” (Uganda) Children took pride in caring for sick family members “We love them so we feed them and bath them…they are our grannies we need to support them” (Boy, 17 Uganda) OWN, SCALE-UP & SUSTAIN

Caring responsibilities The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Caring responsibilities When asked which work they wanted removed, they never talked about removing the burden of caring for sick family members but rather they wanted the burden of finding money to meet the essential needs of the family to be removed. “Early in the morning I feel very bad because you haven’t done any work yet, but you think about it. You feel the weight. Yes, you wish it was not there. Even when I am in bed I cannot sleep because of thinking of all the work. Sometimes I am sleepless because of thinking.” (Boys and girls, Angola) OWN, SCALE-UP & SUSTAIN

Support systems OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Support systems Few people knew that children were caring Churches most common form of institutional support Friends are the greatest form of support. “They feel sorry for us. Some of the time if there are functions at school they pay for us. They also give us advice. They say,‘Don’t worry too much. One day you will rest, like other children.’ Yes, they understand if they too are caring.” (Boys and girls, Zimbabwe) High stigma and discrimination: “I feel angry when someone insults me.” OWN, SCALE-UP & SUSTAIN

Some recommendations OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Some recommendations Need for interventions to reduce the heavy burden of economic responsibility that child carers carry. Need (for governments, NGOs and community partners) to address the barriers to accessing schooling, health, protection services Child carers need skills, information and support relating to how to care for older people, younger siblings and people who are living with HIV. OWN, SCALE-UP & SUSTAIN

Read more about this study: The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Read more about this study: Child Carers. Child-led research with children who are carers. Four case studies ; Angola, Nigeria, Uganda and Zimbabwe. Save the Children 2010 www.savethechildren.org OWN, SCALE-UP & SUSTAIN