C.6.The Challenges faced by children in accessing and adhering to ART: Insights from care givers
I. Makwiza; R. Weigel; D. Chiunguzeni; A. Nyoni; J.Kemp
Objectives and Scope: The Study was conducted at the Lighthouse in Lilongwe with the following objectives:
To investigate caregivers’ understanding of HIV/AIDS illness and ART amongst children
To determine the caregivers’ perceptions of barriers and enabling/motivating factors to adhering to ART for children
To explore system reported levels of treatment adherence and reasons for defaulting from treatment
To find out reasons why people currently on ART do not put their children on ART
Methods: This was a qualitative study deploying Focus Group Discussion, Critical Incidence Narratives and Observation. Study participants were caregivers of children on ART; caregivers of children who interrupt treatment; female and male caregivers of children with AIDS who are not on ART; female and male caregivers who are taking ART themselves but do not have a child on ART.
Results: The study took place during the time when ART became free, thus for the first caregivers recruited cost was the key issue, but less so for later caregivers who faced opportunity costs of accessing treatment. Barriers to adherence included forgetting to give the drugs to the child or feeling it is not so necessary as the child’s health improves; the child or caregiver travelling away from home and death of a parent. There were also cases of caregivers deliberately reducing the dosage so that the drugs lasted longer. Most children were not aware of their HIV status or why they are taking drugs. System related barriers included long waiting times, especially to retrieve files and language challenges. Many people on ART were not aware that there is also a service available for children.
Conclusion/recommendations: The challenges faced by children in accessing adhering to ART are inextricably bound with the caregiver. The needs and priorities of both children and their caregivers need to be taken into consideration in flexible and responsive approaches.