Caregivers' challenges and feelings about informing the children of their HIV-positive status

Abstract

Today, as HIV in South Africa has moved from an acute, fatal disease to one that can be managed with medication, more and more children will grow up living with HIV as a chronic disease. Disclosure of one's HIV status is an essential part of behaviour modification, as well as providing access to HIV treatment and management programmes, and for decreasing levels of community stigma. 'It is therefore important for children to learn about their disease in a way they can understand, and so that they can actively be involved in their treatment and care plans. Given the complex issues involved in paediatric HIV disclosure, and the lack of insight into these issues in resource-limited settings, there is a clear need for research on this disclosure in South Africa. This study seeks to explore the challenges and feelings of caregivers about disclosing their children's HIV-positive status to them. The study used a qualitative approach and was conducted in Khayelitsha, Cape Town. The non-probability sampling method was used to purposively recruit participants for the study. Semi-structured interviews were used as the main tool of data collection during individual interviews. For data analysis, the researcher adopted Tesch's (1990) eight steps of data analysis as described in Creswell (2003). The findings of this study are presented in Chapter Four. It has emerged in this study that there are a number of challenges that are hindering caregivers about informing their children about their HIV-positive status. There are emotional issues that affect caregivers, such as lack of confidence and feelings of quilt and shame about their children's HIV-positive status. Furthermore there were challenges that the caregivers faced with regard to disclosure such as their lack of communication with their children, particularly on HIV or sex-related topics, their own lack of information about HIV/ AIDS, their own disclosure issues, and arguments about who should disclose to the child.