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A longitudinal study of neurodevelopmental delay in HIV infected children

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.

Identiferoai:union.ndltd.org:netd.ac.za/oai:union.ndltd.org:wits/oai:wiredspace.wits.ac.za:10539/5055
Date15 July 2008
CreatorsPotterton, Joanne Louise
Source SetsSouth African National ETD Portal
LanguageEnglish
Detected LanguageEnglish
TypeThesis
Format3065466 bytes, application/pdf, application/pdf

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