COMMUNICATION IN THE CONTEXT OF FAMILY CAREGIVING: AN EXPLORATORY STUDY OF UGANDAN CHILDREN ON ANTIRETROVIRAL THERAPY

It is important to consider the complexities of family dynamics when deciding when and how to communicate with HIV-infected children about their illness and treatment. Previous research has focused on providers' and caregivers' perspectives on whether, when and how to disclose HIV/AIDS diagnosis and treatment to HIV-infected children. From the perspective of HIV-infected children, communication does not mean just giving information about illness and treatment, but also encompasses emotional and material care. This paper places communication within the broader framework of caregiving in family situations. This exploratory study was conducted in Jinja district, Uganda, between November 2011 and December 2012. Through participant observation and in-depth interviews, communication by, and with, HIV-infected children in the context of family situations was explored from the perspectives of 29 HIV-infected children aged 8-17 years on antiretroviral therapy (ART) using content thematic analysis. Children's communication with caregivers about their illness and treatment varied depending on whom they were living with and the nature of caregiving. Although a mother's care was considered best, children described others who cared 'like a mother'. For some, caregiving was distributed among several relatives and non-relatives, while others felt they had hardly anyone to care for them. Caregiving from the children's perspective involved emotional support, expressed verbally and explicitly in messages of concern, encouragement conveyed in reminders to take medicines, attention when sick and confidential conversations about the challenges of having HIV and taking ART. Caregiving was also communicated implicitly in acts of provision of food/drinks to take with medicines, counting pills to confirm they had taken the medicines and accompanying children to treatment centres. Children's communication about their health and medicines and the care they received was to a large extent shaped by the nature of their relatedness to their caregivers, the extent to which caregiving was dispersed among several people and who else in the household was infected with HIV and on medication.