A longitudinal study of neurodevelopmental delay in HIV infected children

Potterton, Joanne Louise
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ABSTRACT Paediatric HIV remains one of the most significant challenges to face children, their families and their health care providers in South Africa. The prevalence rate of paediatric HIV infection in South Africa is set to remain high until such time as universal access to antiretrovirals for prevention of mother to child transmission is achieved, and the mother to child transmission rates of HIV start to come down. HIV is neurotrophic and is known to invade the developing central nervous system and cause widespread damage. The result of this is a well described encephalopathy which has the potential to affect all facets of development. Children in South Africa who are infected with HIV are vulnerable to a number of factors which may cause developmental delay. Poverty and malnutrition are likely to exacerbate the developmental delay caused by HIV encephalopathy. Physiotherapists in South Africa have not become involved in the long term management of children infected with HIV and paediatric HIV clinics do not routinely offer any rehabilitation services. The prevalence and extent of developmental delay in HIV infected children in South Africa has not been established. Despite the fact that a number of studies have highlighted the prevalence of developmental delay in Western countries, no intervention studies addressing this problem could be found. Caregivers of HIV infected children face numerous stressors. Poverty, stigma and their own health care needs make parenting an HIV positive child even more challenging. The needs of caregivers of HIV infected children have not been well researched in the context of developing countries. The aim of this study was therefore to establish whether a basic home stimulation programme would have any impact on the neurodevelopmental status of young children infected with HIV, and on the parenting stress levels of their caregivers. Further objectives of the study were to establish the prevalence and progression of developmental delay in HIV infected children; to monitor the effect of antiretrovirals on neurodevelopment; to determine who the caregivers of HIV infected children were and to determine what factors were predictive of neurodevelopmental status and parenting stress levels. In order to meet these objectives a longitudinal randomized controlled trial was conducted. One hundred and twenty two HIV positive children, under two and a half years of age, were recruited for this study at Harriet Shezi Children’s Clinic at Chris Hani Baragwanath Hospital in Soweto. Children were randomly assigned to a control or an experimental group. The developmental status of all children was monitored over a year using the Bayley Scales of Infant Development II. Parenting stress was monitored with the Parenting Stress Index/Short Form. Children in the experimental group received a basic home stimulation programme, which was updated every three months when they came to visit the clinic, as well as all the usual clinic services. Children in the control group received all the usual services at the clinic but no stimulation programme. Most of the children in the sample were cared for by their biological mothers. They came from poor homes with limited access to common household amenities. Most of the caregivers had not completed 12 years of schooling. The children in the control and experimental groups were well matched for all their baseline measurements and demographic characteristics. At baseline the children were wasted and stunted and had very low CD4 counts. Only 16% of the children were on antiretrovirals at baseline assessment. The children were severely delayed with respect to both motor and cognitive development. The parenting stress levels of the caregivers were very high at baseline. Over the period of one year the children in the experimental group showed a significantly greater improvement in cognitive (p=0.01) and motor (p=0.02) development when compared to children in the control group. Although the children improved, they still had a degree of developmental delay at the end of the study period. The parenting stress levels decreased significantly for caregivers in both the control and the experimental groups (p<0,001), but there was no significant difference between the two groups (p=0.057). The groups were well matched at all time points for anthropometric measures and CD4 counts with no significant differences being found. There was also no difference in the number of children on antiretroviral therapy between the groups at any time. Children who were antiretroviral naïve at the start of the study and then started highly active antiretroviral therapy showed a significant improvement in motor development (p<0.001), but no improvement in cognitive development (p=0.77). A combination of a number of factors was predictive of developmental status. This included growth parameters, CD4 counts and the age of the child. Being in the experimental group and being older at baseline assessment were important predictors of improvement in MDI and PDI over time. Parenting stress was predicted by a number of factors, including educational level of the caregiver, type of housing and the number of children in the household. A decrease in parenting stress was most likely in caregivers who were better educated and who lived in households with fewer adults. These results signify that a basic home programme can significantly improve both the cognitive and motor development of young children infected with HIV. This programme was simple and easily implemented and should become standard practice at paediatric HIV clinics in South Africa. The current protocol for administering antiretrovirals in South Africa allowed for motor, but not cognitive improvement in young children commencing treatment. Parenting stress was not affected by the addition of a basic home stimulation programme.The psychosocial and developmental needs of South African children infected with HIV are complex and multifaceted. Further research is needed to establish the best possible interventions for these children and their families.
HIV, neurodevelopment, parenting stress, caregivers