Relatedness, communication, and care of children living with HIV in eastern Uganda

Communication in the context of family caregiving: an exploratory study of Ugandan children on antiretroviral therapy.

Kajubi P, Katahoire AR, Kyaddondo D, Whyte SR. J Biosoc Sci. 2015 Oct 28:1-22. [Epub ahead of print]

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.

Abstract access 

Editor’s notes: The majority of children who acquire HIV are infected perinatally. This makes HIV unique among paediatric conditions to the extent that mothers may be ill or deceased. The family plays a vital role in the treatment and care of children, including individuals living with HIV. The family context is an important consideration when supporting children to adhere to care. It also affects decisions on how and when to communicate with children about their illness and treatment. The authors argue that for children living with HIV, communication is not just the transmission of factual information, but also the conveying of concern, feelings of affection and implicit messages of support, as well as their opposites. This is particularly important in the context of loss and family disruption; stigma and discrimination; and dislocation from siblings and other family when children are cared for by new carers.

This qualitative paper draws on ethnographic data collected between 2011 and 2012 in eastern Uganda through in-depth interviews and participant observation. A total of 29 children living with HIV aged between eight and 17 years and on ART were followed up for one year. Children were purposively sampled to include different ages, sexes and family status (residence, orphan status), education levels and disclosure statuses.

The study draws on the concept of ‘relatedness’ in order to understand the meaning of communication in the context of family caregiving. It highlights that communication by, and with children living with HIV, extends beyond the transmission of information to being structured around a much broader relationship of care. This has important implications for treatment centres as the person that a child lives with may not always be their main caregiver. This framing incorporates a broader understanding of caregiving to include both emotional and material support which may be delivered both explicitly and implicitly through words and deeds.

Africa
Uganda
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