Abstract #249  -  Young carers and the impact of AIDS: Increased burden of care on children for their AIDS-sick adult-caregivers
Authors:   Presenting Author:   Dr Lucie Cluver - Oxford University
Additional Authors:  Mr Tyler Lane, Dr Malega Kganakga,
Aim: This is the first known large-scale study worldwide to investigate child carers of AIDS-sick adults. Care in the home is standard for AIDS patients in the developing world. But we know very little about the extent to which children are responsible for patient care. We lack data on types of care tasks, or impacts on child outcomes such as education. This study is a collaboration between the South African government and Oxford University.
Method / Issue: 548 school-aged children (aged 6-20) were interviewed in urban (47%) and rural (53%) areas of South Africa. Modified Respondent-Driven Sampling and the Verbal Autopsy technique (Lopman, 2006) were used. 61% of participants were caring for an AIDS-sick adult. Interviewers used mixed quantitative and qualitative methods and local languages. Full informed consent was obtained from all children and guardians. Questionnaires were designed with the help of an advisory group of AIDS-affected children. Quantitative data were analysed in SPSS and qualitative data using content analysis.
Results / Comments: 25% of children in households with AIDS-sickness did >3 hours of care work/day (mean 2 hours/day), compared to 15% in households with other, non-AIDS, sickness (mean 1.3 hours/day, p<.001). In AIDS-sick households, 28% of children provided intimate care such as washing the sick adult, and 30% were responsible for giving medication (compared to 14% and 18% in other-sick households, p<.01). Children as young as 8 undertook intimate and medical care tasks. In qualitative interviews, children reported a deep sense of filial duty, and desire to delay parental death. Often, extended family had withdrawn from AIDS-patients. In households with other sickness, girls are bearing more of the burden of care (27% girls and 16% boys undertaking >3 hrs/day, p<.01). However in AIDS-sick households, boys undertook increased care responsibilities (25% girls, 29% boys >3hrs/day, ns). This held for both urban and rural areas. Qualitative data suggested that the extreme stressor of AIDS was overriding traditional gendered divisions of labour in the home. Children in rural areas were undertaking much higher levels of care (mean 2.5 hours/day) than those in urban areas (mean 1.3 hours/day, p<.001). In AIDS-sick families, 42% of rural children and 16% of urban children undertook >3 hrs/day of care work. 20% of rural children undertook >5 hours/day of care work. 39% of children in AIDS-sick households were missing or had dropped out of school in order to care (compared to 17% in households with other sickness, p<.001). In qualitative interviews, children reported deep sense of personal responsibility for staying at home to provide care, and accompanying patients to hospital or clinics to queue for them. When at school, children commonly reported inability to concentrate due to hunger and intrusive worries about their sick parent.
Discussion: Children are undertaking time-consuming medical care and domestic tasks, with exceptionally high burden in AIDS-sick households and in rural areas. Caring directly and negatively impacts on education. To date, ‘Young Carers’ have been the invisible children within ‘OVC’. It is essential that further research and interventions address this highly vulnerable group.
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