Communication in the Context of Family Caregiving: An Exploratory Study of Ugandan Children on Antiretroviral Therapy

Abstract

SummaryIt 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.

Informing the measurement of wellbeing among young people living with HIV in sub-Saharan Africa for policy evaluations: a mixed-methods systematic review

“…Mutumba, Bauermeister [102] describes how pill taking between HIV-positive parents and YPLHIV in Uganda fostered bonding "whenever she took hers, I also took mine". In contrast, in three studies, young women expressed the lack of support from caregivers [101,112,120]. Trusting relationships with family members were frequently described as important [101,102,109,121,122].…”

“…Caregivers in a South African study highlighted their lack of social support and how it hindered their ability to cope and subsequently support their children [104]. In three studies, YPLHIV articulated a deep longing for their deceased parents which authors indicated signified the importance parents played in nurturing belonging and its link with creating meaning in life [104,114,117,120]. Moreover, the yearning for one's father was interpreted as being underpinned by "cultural expectations of being cared for and finding a rightful place in their father's home" [114].…”

Ugandan Jajjas: Antecedents and rewards of caring for grandchildren in the context of HIV

“…For example, over the past decade, both physical and psychosocial health symptoms have been reported by these grandparents, including cardiovascular symptoms, increased emotional stress, burnout, fatigue, anger, resentment, guilt, anxiety, mental weariness and isolation (Drah, ; Grobler & Roos, ; Horwitz, Yogo, Juma, & Ice, ; Ice, Yogo, Heh, & Juma, ; Kamya & Poindexter, ; Kasedde et al, ; Littrell, Murphy, Kumwenda, & Macintyre, ; Osafo et al, ; Schatz & Gilbert, ; Sefasi, ; Shaibu, ). Most recent research has also examined the issues of HIV status disclosure (Kajubi, Katahoire, Kyaddondo, & Whyte, ) and care relationships among grandparents–grandchildren dyads (Rutakumwa, Zalwango, Richards, & Seeley, ).…”