The effect of a basic home stimulation programme on the development of young children infected with HIV

What this paper adds

Paediatric human immunodeficiency virus (HIV) remains one of the most significant challenges to face children, their families, and their health care providers in southern Africa. Over 90% of the world’s HIV-positive children live in sub-Saharan Africa, with South Africa having more HIV-positive children than any other country in the world.¹ The prevalence of paediatric HIV infection in South Africa is set to remain high until such time as access to antiretroviral therapy to reduce mother to child transmission is greatly increased.²

HIV is neurotropic and is known to invade the developing central nervous system causing widespread damage. The result of this is a well-described encephalopathy that has the potential to affect all facets of development.³

Encephalopathy may be one of the first clinical signs of HIV infection.⁴ It initially presents with developmental delay, loss of milestones, and deterioration in intellectual abilities. The developmental delay may progress to include pyramidal tract signs, ataxia, abnormal muscle tone, and pseudobulbar palsy, and may ultimately result in spastic quadriparesis with dystonic posturing and regression of motor milestones.^5,6 The development of severe encephalopathy in infancy has been correlated with serious systemic disease and an increased and early mortality.^7,8 Children who present with acquired-immunodeficiency-syndrome-defining illnesses in the first 2 years of life are at risk of also having significant neurodevelopmental delays which may be attributed to HIV encephalopathy.^5,8,9

Although numerous prevalence studies from developed countries have identified neurodevelopmental problems in children infected with HIV, a limited number of longitudinal studies have been carried out to monitor children’s developmental progress. The majority of these studies have been conducted in developed countries where children have access to antiretroviral therapy.^5,7

South African physiotherapists have had little input into the long-term management of children infected with HIV. Present staffing levels at provincial hospitals make it difficult to offer regular physiotherapy services to all children with HIV in South Africa. A study by Spiegel and Mayers¹⁰ found that a regular home-based physiotherapy programme provided a sense of purpose and competence for caregivers of children infected with HIV. However, the authors did not describe the physiotherapy programme or discuss its possible impact on the child. There is very little information available to guide physiotherapists in determining whether or not to treat children infected with HIV, and what treatment would be most appropriate. As more children gain access to antiretroviral therapy and survive for longer, their rehabilitation needs are likely to increase.¹¹

Children in South Africa who are infected with HIV are vulnerable to a number of additional factors that may cause developmental delay. Poverty and malnutrition are likely to exacerbate the developmental delay caused by HIV encephalopathy.¹² Early child development programmes are aimed at improving the growth and development of young children. The most effective programmes (1) provide learning opportunities for children and their families, (2) are targeted towards younger more disadvantaged children, (3) are of longer duration, and (4) are integrated into other child and family services.¹³ In developing countries, programmes that aimed at providing skills and knowledge to mothers to promote their children’s development within the limited resources of the family have been shown to be effective.^14,15

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, within the context of a busy outpatient paediatric HIV clinic.

Method

A longitudinal, randomized, controlled trial was conducted. A total of 122 HIV-positive children aged less than 2 years 6 months were recruited for this study at Harriet Shezi Children’s Clinic, Chris Hani Baragwanath Hospital in Soweto. Informed consent from the child’s caregiver and ethics clearance from the Committee for Research on Human Subjects of the University of the Witwatersrand were obtained before data collection.

Consecutive children aged less than 2 years 6 months attending the clinic were screened to determine eligibility for the study. Screening took place over 1 and a half years. Inclusion criteria for the study were age less than 2 years 6 months, infection with vertically transmitted HIV, and attendance at the clinic with the primary caregiver. The exclusion criteria applied were as follows: the presence of clinically apparent congenital abnormalities, preterm birth (<37wks gestation), and residence in an institution. Children already receiving physiotherapy were also ineligible to participate. Ten children were excluded and only one caregiver approached refused to participate in the study.

Children were randomly assigned to a comparison or an experimental group by the research assistant. A computer-generated random numbers table and concealed allocation were used. Randomization was carried out after caregivers had signed an informed consent document and before any testing. The developmental status of all children was assessed at baseline and then at 6 and 12 months using the Bayley Scales of Infant Development, 2nd edition (BSID-II).¹⁶ All children were assessed by a blinded assessor (JP). Children in the experimental group received a basic home stimulation programme, which was updated every 3 months when they came to visit the clinic, as well as all the usual services at the clinic. Children in the comparison group received all the usual services at the clinic but no stimulation programme.

Children in the experimental group were given individual home programmes by the research assistant, who was a qualified physiotherapist. The stimulation programme was structured around activities of daily living and developmentally appropriate play that could be incorporated into the family’s daily routine. Activities that could be incorporated into bathing, feeding, dressing, and playing were emphasized. Each home programme was based on the concerns and priorities expressed by the caregivers as well as the child’s performance on the BSID-II. For example, many caregivers were concerned that their children were slow to walk. They were then advised against using walking rings and encouraged to allow their children to stand and play with toys placed on a low table or sofa. Caregivers were always given a small picture book to take home and were asked to spend time each day looking at pictures with their child and talking about what they saw in the book. These picture books were also used to promote the development of shape and number concepts in the slightly older toddlers. Fine motor activities included drawing and threading. The reasons for potential developmental delay were explained to the caregivers with a very basic explanation that HIV can affect the infant’s brain and, therefore, their developmental progress. The impact of repeated illness, hospitalization, and malnutrition on normal development was also explained.

All caregivers completed the Household Economic and Social Status Index¹⁷ questionnaire and a biographical questionnaire at baseline. All children had their height, weight, and head circumference measured at each visit, and their most recent CD4 (T cell) count was recorded from their file. CD4 counts and percentage tests were performed using standard dual-platform flow cytometry. Parenting stress was assessed using the Parenting Stress Index (Short-Form) and has been previously reported.¹⁸ Children in both groups were referred to a social worker or dietitian if appropriate.

Results

Thirty children were lost to follow-up during the study period. Of these, 18 died, with most of the others being lost because the family moved out of the area. Loss to follow-up affected both groups almost equally. Seventeen participants were lost from the experimental group and 13 from the comparison group.

The two groups were well matched for all demographic variables measured, with no significant difference found between the two groups. The study population was relatively young and the vast majority of children were still being cared for by their biological mothers, the majority of whom were in their 20s and 30s. The families in which the children lived were poor, with little access to common household amenities. One-third of families lived in their own houses, which they did not share with other families. Only one-third of caregivers had completed school (12y; Table I).

The children in the comparison and experimental groups were well matched for all their baseline anthropometric and clinical measurements. At baseline, the children were underweight and had growth retardation, and had very low CD4 counts (Table II).

Only 16/100 of the children were on antiretroviral therapy at baseline assessment. This was because the South African government did not yet provide antiretroviral therapy in government hospitals. As the study progressed, however, more children gained access to highly active antiretroviral therapy (HAART) as government policy changed. There was no significant difference between the two groups in terms of number of children on HAART and mean CD4 count at any time point during the study (Table III).

The children were severely delayed with respect to both motor and cognitive development at baseline assessment (Table IV).

The mental developmental index (MDI) for both groups of children was extremely low initially. There was no significant difference between the two groups with respect to MDI (p=0.27) at baseline. However, the degree of change over the year was significantly greater (p=0.01) in the experimental group (from MDI 62.6–69.3) than in the comparison group (from MDI 68.5–64.3). Despite the fact that the children in the experimental group improved slightly during the course of the study, the mean MDI scores at the end of the study period indicate that the children’s cognitive development was still significant delayed.

The psychomotor developmental index (PDI) was initially extremely low in both groups of children and there was no significant difference between the two groups with respect to PDI (p=0.57) at baseline. The degree of improvement over time was significantly greater (p=0.02) in the experimental group (from PDI 49.8–70.5) than in the comparison group (from PDI 57.4–65.9). Although both groups showed some improvement in PDI scores over the study period, the mean PDI scores for both groups remained low, indicating that the children still had significant motor delay at the end of the study period.

The groups were well matched at all time points for anthropometric measures and CD4 counts, with no significant difference being found. There was also no difference in the number of children on antiretroviral therapy between the groups at any time.

Discussion

In this study, improvement in both MDI and PDI scores over the study period was significantly greater among children in the experimental group than among children in the comparison group. These results indicate that a basic home management programme does have a positive effect on the neurodevelopmental status of children who are HIV positive.

Although both the MDI and PDI improved significantly in the treatment group, the scores reached at the end of the study were still well below the normal ranges (MDI 66.64; PDI 68.02). This indicates that, although the children improved, their development remained severely delayed, and they remained in need of further follow-up and intervention.

Among the children in the comparison group, MDI scores remained stable, whereas PDI scores improved over time. Many studies have shown that children infected with HIV experience a gradual decline in cognitive and motor development over time, especially in the first 18 months of life.^19,20 The fact that motor development also improved among children in the comparison group could be the result of a number of different factors. At the start of the study, only 16/100 of the children in the comparison group were receiving HAART; by the completion of the study, this figure had risen to 85%. A number of studies have assessed the impact of HAART on neurodevelopment and, although the results of such studies are not conclusive, and not all of them considered motor development, HAART does seem to have a positive effect on developmental status.^21–23 A recent study from South Africa strongly supports the early initiation of HAART regardless of CD4 count. The suggested approach may positively affect neurodevelopmental outcomes and reduce the need for rehabilitation.²⁴

Children in the comparison group also showed slight improvements in their weight for age, height for age, and weight for height over the study period. These improvements in weight and growth could also contribute to the improved motor function observed at the end of the study. An increase in weight may mean that muscle bulk and muscle strength also increased and contributed to the improved motor performance. Nutritional support in the form of food supplements, as well as education and dietary advice, were available to all children attending the clinic.

In designing the intervention programme, we were cognisant of the time and cost constraints facing both health care providers and users in South Africa. An intervention that was sustainable beyond the boundaries of the study was envisaged. The intervention was planned with these time and cost constraints in mind.

Mothers infected with HIV have expressed the need for one point of call for all services.^25,26 The intervention was therefore administered at the clinic on the same day as the mother had an appointment to see the doctor. The fact that the assessments and intervention were carried out at the clinic on the same day as the doctor’s appointment may also have lent the study credibility as it was seen as an integral part of the clinic services. Prado et al.²⁷ found that mothers were more likely to participate in a psychosocial intervention if they perceived a need for the intervention, had low social support, high stress levels, and, most importantly, if they established a therapeutic alliance with the health care provider from an early stage in the intervention. Caregivers who participated in this study certainly seemed aware of their child’s developmental difficulties and expressed concern over their delay.

A non-structured approach was used, and the research assistant followed the leads given by the caregivers as to what aspects of development were delayed, as well as her own assessment of the child’s strengths and weaknesses and the results of the most recent BSID-II assessment. Although this approach worked in this situation, it does rely heavily on the clinical expertise and the critical thinking and decision-making of the person administering the intervention. A more structured set of guidelines may be necessary to guide clinicians or community workers with less experience and expertise.

Conclusion

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 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.