Factors underlying taking a child to HIV care: implications for reducing loss to follow-up among HIV-infected and -exposed children.

OBJECTIVE With the aim of reducing pediatric loss to follow-up (LTFU) from HIV clinical care programs in sub-Saharan Africa, we sought to understand the personal and socio-cultural factors associated with the behavior of caregivers taking HIV-infected and -exposed children for care in western Kenya. METHODS Between May and August, 2010, in-depth interviews were conducted with 26 purposively sampled caregivers caring for HIV-infected (7), HIV-exposed (17) and HIV-unknown status (2) children, documented as LTFU from an urban and rural HIV care clinic. All were women with a majority (77%) being biological parents. Interviews were audio-recorded, transcribed and content analyzed. RESULTS Thematic content analysis of the women's perceptions revealed that their decision about routinely taking their children to HIV care involved multiple levels of factors including: (1) intrapersonal: transport costs, food availability, time constraints due to work commitment, disclosure of HIV status for both mother and child, perception that child is healthy and religious beliefs; (2) interpersonal: unsupportive male partner, stigma by the family and family conflicts; (3) community: cultural norms, changing community dynamics and perceived stigma; (4) health care system: clinic location, lack of patient-centered care, delays at the clinic and different appointment schedules (mother and child). Furthermore, the factors across these different levels interacted with each other in a complex way, illustrating the challenges women face in taking their children to HIV care. CONCLUSION The complexity and interconnectedness of the factors underlying retention of children in HIV care perceived by these women caregivers suggests that interventions to reduce pediatric LTFU need to be holistic and address multiple socio-ecological levels. Patient-centered care that integrates a family-centered approach to HIV pediatric care is recommended.