Caring for a young child who is HIV exposed and whose HIV status is not yet known: a scoping review of mothers' experiences

Living with HIV can affect mothers' wellbeing, functioning, and experiences of caregiving. Most research about caregiving in the context of HIV comes from studies of dyads where both mother and child are living with HIV. Less is known about how mothers experience caregiving when their children are HIV exposed, but their HIV-status is not yet known. We conducted a scoping review to map out existing evidence on this topic. Systematic database search was conducted combined with a purposive hand search and expert consultation to identify relevant peer-reviewed literature. Title and abstract screening followed by a full-text review was done to select eligible studies. Studies were eligible for inclusion if they related to maternal caregivers; young children exposed to HIV, confirmed to be uninfected or whose HIV-status is unknown; and caregiving including any maternal involvement with her child. We identified 19 relevant studies. Analysis revealed that many mothers' caregiving experience was marked by feelings of fear and stress in the early months of motherhood, mostly to do with the possibility of the child receiving a positive HIV diagnosis. Two dominant themes emerged - (1) experiences related to feeding and (2) experiences related to HIV testing, medications and health care utilization. Mothers had concerns pertaining to HIV transmission, feeding choices, efficacy of antiretrovirals and infant testing at multiple stages. Finally, any kind of support received from family, community or health workers, acted as a facilitator to improve caregiving experiences. This review highlights the need to provide additional support to mothers in their caregiving roles, especially before a child's negative HIV-status is confirmed. Further investigation is warranted to determine if mothers' concerns and challenges with caregiving persist even after HIV has been ruled out in the child.