This study aimed to determine the level of non-adherence to ART among children under five years in Jinja district, Uganda, and the factors associated with it. Inasmuch as optimal adherence is important for achieving viral load suppression and delaying emergence of drug resistance, findings from the study showed children under five years in Jinja to have a high level of non-adherence to ART. Non-adherence was more prevalent among children who attended school/day-care and those from households with food insecurity, and less among children with caregivers receiving financial support from family members and those with increased satisfaction with the quality of service received at the child’s ART clinic.
Most previous paediatric ART adherence research has studied children under five years combined with children of older age groups, using cut-offs varying from 80–95%. Most of these studies have also reported lower levels of non-adherence than what was found in this study. Wadunde, Tuhebwe (7) studied children aged 0 to 14 years in Western Uganda and found the level of non-adherence to be 21% using self-reports at a 90% cut off. This is similar to the 30% found among 2 to 19 year old children in Tanzania at an 80% cut-off using pill counts (22), and the 9.7% among children under 15 years in Ethiopia using self-reports at a 95% cut-off (23). Davies, Boulle (24) also reported a lower non-adherence level among children under five years in South Africa using medicine return at a 90% cut-off. However, studies that utilized combined measures of adherence were able to identify more non-adherent children and found similarly high levels of non-adherence as was found in our study. Nsheha, Dow (25) found non-adherence among children aged 2 to 17 years in Tanzania to be as high as 75.4% when they were subject to three measures of adherence: a two-day self-report, a one-month VAS and unannounced pill counts.
Differences were observed between the two adherence measures used. More children were categorized as non-adherent by VAS than PDC, suggesting that many caregivers collect the ART medicines for their children from the clinics but fail to administer them at home. Providing ART at no cost in ART clinics in Uganda eliminates the biggest financial barrier to access, even if other barriers at home still prevail. It is also notable that healthcare providers during routine practice were only able to identify a few of the non-adherent children implying that relying on appointment keeping at the clinics alone to measure non-adherence, as is the practice in Uganda, may not be sufficient to identify and support non-adherent children.
Children who were in school/day-care were found to be more likely to be non-adherent and this could be attributed to the differences in daily schedules between these children and their caregivers, which make it easy for doses to be skipped. Moreover, even if the caregiver remembers to administer the drugs after the scheduled dosing time, there would be no way of quickly administering the drug if the child has already left for school/day-care. The stigma faced by HIV positive children and their caregivers also makes it hard for the caregivers to entrust school teachers to help with administering the medicine at school. Nyogea, Mtenga (22) found unfavourable school environments to be a barrier to optimal adherence among children on ART in Tanzania.
Food insecurity was found to be associated with non-adherence and this would be expected as caregivers who are afraid of effects of administering food on an empty stomach skip their children’s doses as they wait for food to be available. This finding is also similar to what Ndayikeje, Wilson (26) found in Rwanda where lack of food to take with tablets was associated with non-adherence to ART among children aged 1 to 18 years. However, contrary to the expectation, we found households with severe food insecurity to be less likely to have non-adherent children than those with mild and moderate food insecurity. According to the HFIAS, households with severe food insecurity experience frequent cut-backs on meal sizes and frequencies and often run out of food (20). It is possible that such households have fallen into a more predictable food shortage routine and adapted better than those with mild and moderate food insecurity. As such, the effects of food insecurity on their children’s adherence is less pronounced than that of household with mild and moderate insecurity. Nonetheless, their children were still more likely to be non-adherent than those from households with secure food access.
As would be expected, children of caregivers who were satisfied with the quality of service at the health facilities were less likely to be non-adherent. The scale used to measure satisfaction with the quality of service at the health facility measured attributes such as the physical environment, pharmacy service, waiting time and the way the healthcare provider related with the children and caregivers. Good quality services motivate caregivers to keep appointments to collect medicine. Nabukeera-Barungi, Elyanu (9) also found supportive health care workers and short waiting time at the health facility to be facilitators of adherence among adolescents in Uganda. It is however surprising that none of the drug regimen characteristics were significantly associated with non-adherence as these had been reported in previous studies (22, 24, 26).
Caregivers whose main source of financial support was from their family were less likely to have non-adherent children than those who relied on their jobs. It is possible that those who rely on their jobs are at times forced to work longer hours to be able to provide for their families adequately, and if they do not have enough social support, may fail to administer medicine to their children in time
A VAS is a subjective measure and is prone to reporting bias which may have underestimated non-adherence, especially as the data was obtained from caregivers. Drug refill data also assumes that all collected medicine is administered as instructed, and this may have also underestimated non-adherence. On the other hand, drug refill data may fail to reveal previous excess refills which may assume non-adherence where there is none, and thus overestimate non-adherence. Nonetheless, using the two measures combined together in this study increased the ability of the study to identify non-adherence.