DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY ORIGINAL ARTICLE

The effect of a basic home stimulation programme on the

development of young children infected with HIV
JOANNE POTTERTON 1 | AIMEE STEWART 1 | PETER COOPER 2 | PIETER BECKER 3

1 Department of Physiotherapy, University of the Witwatersrand, Johannesburg, South Africa. 2 Department of Paediatrics, University of the Witwatersrand, and Charlotte
Maxeke Johannesburg Hospital, Johannesburg, South Africa. 3 Medical Research Council of South Africa, Pretoria, South Africa.
Correspondence to Dr Joanne Potterton at University of the Witwatersrand, Department of Physiotherapy, 7 York Road, Parktown 2193, South Africa. E-mail: joanne.potterton@wits.ac.za

PUBLICATION DATA AIMS The human immunodeficiency virus (HIV) potentially causes a significant encephalopathy
Accepted for publication 17th September and resultant developmental delay in infected children. The aim of this study was to determine
2009. whether a home-based intervention programme could have an impact on the neurodevelopmen-
Published online 30th November 2009. tal status of children infected with HIV.
METHOD A longitudinal, randomized, controlled trial was conducted. A total of 122 children aged
LIST OF ABBREVIATIONS less than 2 years 6 months were assigned to either a comparison or an experimental group. Chil-
HAART Highly active antiretroviral therapy dren in the experimental group were given a home stimulation programme that was updated
HIV Human immunodeficiency virus every 3 months. The home programme included activities to promote motor, cognitive, and
MDI Mental Developmental Index speech and language development. Children in the comparison group received no developmental
PDI Psychomotor Developmental Index intervention. Children were assessed by a blinded assessor at baseline, 6 months, and 12 months
using the Bayley Scales of Infant Development, 2nd edition.
RESULTS The children in this study came from poor socioeconomic backgrounds and their nutri-
tional status was suboptimal. The experimental group included 60 children (30 males, 30 females)
with a mean age of 18 months (SD 8.1mo). The comparison group included 62 children (32 males,
30 females) with a mean age 19 months (SD 8.2mo). Cognitive and motor development were
severely affected at baseline, with 52% of the children having severe cognitive delay and 72% hav-
ing severe motor delay at baseline. Children in the experimental group showed significantly
greater improvement in cognitive (p=0.010) and motor (p=0.020) development over time than chil-
dren in the comparison group.
INTERPRETATION A home stimulation programme taught to the caregiver can significantly
improve cognitive and motor development in young children infected with HIV.

Paediatric human immunodeficiency virus (HIV) remains one
of the most significant challenges to face children, their fami-
lies, 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 paedi-
atric 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 poten-
tial 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-immu-
nodeficiency-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 develop-
mental progress. The majority of these studies have been con-
ducted 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. Pres-
ent 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

ª The Authors. Journal compilation ª Mac Keith Press 2009 DOI: 10.1111/j.1469-8749.2009.03534.x 547
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 chil-
dren 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 encepha-
lopathy.12 Early child development programmes are aimed at
improving the growth and development of young children.
The most effective programmes (1) provide learning opportu-
nities for children and their families, (2) are targeted towards
younger more disadvantaged children, (3) are of longer dura-
tion, and (4) are integrated into other child and family ser-
vices.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 Chil-
dren’s Clinic, Chris Hani Baragwanath Hospital in Soweto.
Informed consent from the child’s caregiver and ethics clear-
ance 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. Inclu-
sion 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-gen-
erated 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 base-
548 Developmental Medicine & Child Neurology 2010, 52: 547–551
What this paper adds
• Children in South Africa who are infected with HIV are at high risk of develop-
mental delay.
• A basic home stimulation programme taught to caregivers can improve devel-
opmental outcome.
• HIV-positive children require long-term follow-up of developmental status.
line 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 exper-
imental 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 quali-
fied physiotherapist. The stimulation programme was struc-
tured 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 bath-
ing, 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 chil-
dren 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 pic-
tures 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 develop-
mental progress. The impact of repeated illness, hospitaliza-
tion, 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 per-
formed using standard dual-platform flow cytometry. Par-
enting 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 dieti-
tian if appropriate.
Statistical analysis
The sample size was calculated to have a power of 90% to
detect a 10 ⁄ 100 change in developmental scores and allowed
for a 20 ⁄ 100 dropout rate.
Statistical analysis was performed using STATA, Release
8.0, for Windows (Stata Corp., College Station, TX, USA).
Attendance at the clinic was monitored and the primary
analysis of data was performed using intention-to-treat
analysis.
The data were summarized using means and standard devia-
tions as descriptive statistics. Baseline data for the comparison
and experimental groups were compared using a two-sample
t-test with equal variance.
With respect to the BSID-II, CD4 counts, and growth
parameters, the comparison and experimental groups were
compared over time in an appropriate analysis of variance for
repeated measures. Level of significance was set at 0.05.
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 under-
weight 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 gov-
ernment hospitals. As the study progressed, however, more
children gained access to highly active antiretroviral therapy
(HAART) as government policy changed. There was no sig-
nificant 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).
Table I: Demographic information for the experimental and comparison groups
Experimental group (n=60)
Age, mean (SD) mo 18 (8.1)
Sex, Male ⁄ Female 30 ⁄ 30
Primary caregiver, mother, n (%) 49 (81.7)
Age of caregiver, mean (SD) 31.7 (10.5)
Education level caregiver (matriculation), n (%) 16 (26.7)
Number of adults in household, mean (SD) 3.2 (2.0)
Number of children in household, mean (SD) 4.1 (7.7)
Monthly income mean (SD) R1435 (5098.9)
Housing: own house, n (%) 24 (40)
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 sig-
nificant delayed.
The psychomotor developmental index (PDI) was initially
extremely low in both groups of children and there was no sig-
nificant 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 anthro-
pometric measures and CD4 counts, with no significant differ-
ence 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 compari-
son group. These results indicate that a basic home manage-
ment 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 develop-
Comparison group (n=62) p value
19.01 (8.2) 0.800
32 ⁄ 30 1
55 (88.7) 0.5
29.8 (8.4) 0.3
16 (25.8) 0.9
3.2 (1.9) 1.0
2.9 (19) 0.6
R939.16 (1893.8) 0.5
28 (45.2) 0.3
Home Stimulation of Young Children with HIV Joanne Potterton et al. 549
 providers and users in South Africa. An intervention that was
Table II: Anthropometric data, mean, SD (baseline 12mo)
sustainable beyond the boundaries of the study was envisaged.
Experimental Comparison
The intervention was planned with these time and cost con-
group group straints in mind.
Mothers infected with HIV have expressed the need for
Head circumference z-score –2.54, 1.3 (–1.5) –2.35, 1.3 (–1.5)
Height for age z-score –3.01, 2.1 (–2.4) –2.71, 1.6 (–2.1)
one point of call for all services.25,26 The intervention was
Weight for age z-score –2.61, 1.4 (–1.5) –2.17, 1. 6 (–1.3) therefore administered at the clinic on the same day as the
Weight for height z-score –0.74, 2.1 (–0.2) –0.57, 1.2 (–0.02) 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
Table III: CD4 counts and percentage of children on HAART
lent the study credibility as it was seen as an integral part of
the clinic services. Prado et al.27 found that mothers were
Experimental group Comparison group p value more likely to participate in a psychosocial intervention if
they perceived a need for the intervention, had low social
Baseline n=60 n=62 support, high stress levels, and, most importantly, if they
CD4 count, % 14.2 14.5 0.9
% on HAART 13.3 16.1 0.8 established a therapeutic alliance with the health care pro-
12mo n=43 n=49 vider from an early stage in the intervention. Caregivers who
CD4 count, % 21.9 19.7 1 participated in this study certainly seemed aware of their
% on HAART 86.1 85.7 1
child’s developmental difficulties and expressed concern over
HAART, Highly active antiretroviral therapy. their delay.
A non-structured approach was used, and the research
ment over time, especially in the first 18 months of life.19,20 assistant followed the leads given by the caregivers as to what
The fact that motor development also improved among chil- aspects of development were delayed, as well as her own
dren in the comparison group could be the result of a number assessment of the child’s strengths and weaknesses and the
of different factors. At the start of the study, only 16 ⁄ 100 of results of the most recent BSID-II assessment. Although this
the children in the comparison group were receiving HAART; approach worked in this situation, it does rely heavily on the
by the completion of the study, this figure had risen to 85%. A clinical expertise and the critical thinking and decision-
number of studies have assessed the impact of HAART on making of the person administering the intervention. A more
neurodevelopment and, although the results of such studies structured set of guidelines may be necessary to guide
are not conclusive, and not all of them considered motor clinicians or community workers with less experience and
development, HAART does seem to have a positive effect on expertise.
developmental status.21–23 A recent study from South Africa
strongly supports the early initiation of HAART regardless of CONCLUSION
CD4 count. The suggested approach may positively affect These results signify that a basic home programme can sig-
neurodevelopmental outcomes and reduce the need for reha- nificantly improve both the cognitive and motor develop-
bilitation.24 ment of young children infected with HIV. This
Children in the comparison group also showed slight programme was simple and easily implemented and should
improvements in their weight for age, height for age, and become standard practice at paediatric HIV clinics in South
weight for height over the study period. These improvements Africa.
in weight and growth could also contribute to the improved The psychosocial and developmental needs of South African
motor function observed at the end of the study. An increase children infected with HIV are complex and multifaceted.
in weight may mean that muscle bulk and muscle strength also Further research is needed to establish the best possible inter-
increased and contributed to the improved motor perfor- ventions for these children and their families.
mance. Nutritional support in the form of food supplements,
as well as education and dietary advice, were available to all ACKNOWLEDGEMENTS
children attending the clinic. This study was funded by grants from the Medical Research Council
In designing the intervention programme, we were cogni- of South Africa and the AIDS Research Institute of the University of
sant of the time and cost constraints facing both health care the Witwatersrand, South Africa.

Table IV: Mean (SD) mental developmental index (MDI) and psychomotor developmental index (PDI) over visits by group

Experimental group Comparison group

MDI PDI MDI PDI

Visit 1 62.60 (21.51), n=60 49.8 (22.6), n=60 68.53 (22.10), n=62 57.4 (24.8), n=62
Visit 3 61.63 (20.45), n=43 59.3 (25.1), n=43 69.38 (22.33), n=50 63.2 (24.8), n=50
Visit 5 69.30 (19.84), n=43 70.5 (25.1), n=43 64.31 (17.43), n=49 65.9 (24.5), n=49

550 Developmental Medicine & Child Neurology 2010, 52: 547–551

REFERENCES
1. Joint United Nations Programme on HIV/AIDS (UNA-
IDS). AIDS epidemic update, UNAIDS/WHO, 2007.
http://data.unaids.org/pub/EPISlides/2007/2007_epiupdate_
en.pdf (accessed 13 November 2009).
2. Meyers T, Pettifor J, Grey G, Crewe-Brown H, Galpin J.
Paediatric admissions with human immunodeficiency virus
infection at a regional hospital in Soweto, South Africa.
J Trop Pediatr 2000; 46: 224–30.
3. Baillieu N, Potterton J. The extent of delay in language,
motor and cognitive development in HIV-positive infants.
J Neurol Phys Ther 2008; 32: 118–21.
4. European Collaborative Study. Neurologic signs in young
children with human immunodeficiency virus infection.
Paediatr Infect Dis J 1990; 9: 402–6.
5. Belman A, Muenz L, Marcus J, et al. Neurologic status of
human immunodeficiency virus 1-infected infants and their
controls: a prospective study from birth to 2 years. Pediatrics
1996; 98: 1109–18.
6. Tardieu M. HIV-1 and the developing central nervous sys-
tem. Dev Med Child Neurol 1998; 40: 843–6.
7. Llorente A, Brouwers P, Charurat M, et al. Early neurode-
velopmental markers predictive of mortality in infants
infected with HIV-1. Dev Med Child Neurol 2003; 45: 76–
84.
8. Pearson D, McGrath N, Nozyce M, et al. Predicting HIV
disease progression in children using measures of neuropsy-
chological and neurological functioning. Pediatrics 2000;
106: e76.
9. Chase C, Ware J, Hittelman J, et al. Early cognitive and
motor development among infants born to women infected
with human immunodeficiency virus. Pediatrics 2000; 106:
e25.
10. Spiegel L, Mayers A. Psychosocial aspects of AIDS in chil-
dren and adolescents. Paediatr Clin North Am 1991; 38:
153–67.
11. Nixon S, Cott C. Shifting perspectives: reconceptualising
HIV disease in a rehabilitation framework. Physiother Can
2000; 52: 189–97.
12. Saloojee H, Pettifor J. International child health: 10 years of
democracy in South Africa; the challenges facing children
today. Curr Paediatr 2005; 15: 429–36.
13. Engle P, Black M, Behrman J, et al.; the International Child
Development Steering Group. Strategies to avoid the loss of
developmental potential in more than 200 million children in
the developing world. Lancet 2007; 369: 229–42.
14. Powell C, Grantham-McGregor S. Home visiting of varying
frequency and child development. Pediatrics 1989; 84: 157–
64.
15. Eickmann S, Lima A, Guerra M, et al. Improved cognitive
and motor development in a community-based intervention
of psychosocial stimulation in northeast Brazil. Dev Med
Child Neurol 2003; 45: 536–41.
16. Bayley N. Bayley Scales of Infant Development, 2nd edn.
NY, USA: The Psychological Corporation, 1993.
17. Barbarin O, Richter L. Mandela’s Children: growing up in
post-apartheid South Africa. KY, USA: Routledge, 2001.
18. Potterton J, Stewart A, Cooper P. Parenting stress of caregiv-
ers of young children who are HIV positive. Afri J Psychiatry
2007; 10: 210–4.
19. Blanchette N, Smith M, Fernandes-Penney A, King S, Read
S. Cognitive and motor development in children with
Home Stimulation of Young Children with HIV Joanne Potterton et al. 551
vertically transmitted HIV infection. Brain Cogn 2001; 46:
50–3.
20. Msellati P, Lepage P, Hitimana D, van Goethem C, van der
Perre P, Dabis F. Neurodevelopmental testing of children
born to human immunodeficiency virus type 1 seropositive
and seronegative mothers: a prospective cohort study in Ki-
gali, Rwanda. Pediatrics 1993; 92: 843–8.
21. Resino S, Resino R, Micheloud D, et al. Long term effects of
highly active antiretroviral therapy in pretreated, vertically
HIV Type-1 infected children: 6 years of follow-up. Clin
Infect Dis 2006; 42: 862–9.
22. Sanchez-Ramon S, Resino S, Cano J, Ramos J, Gurbindo D,
Munos-Fernandes A. Neuroprotective effects of early antiret-
rovirals in vertical HIV infection. Paediatr Neurol 2003; 29:
218–21.
23. Raskino C, Pearson D, Baker C, et al. Neurologic, neurocog-
nitive, and brain growth outcomes in human immunodefi-
ciency virus-infected children receiving different nucleoside
antiretroviral regimens. Pediatrics 1999; 104: e32.
24. Violari A, Cotton M, Gibb D, et al. Early antiretroviral ther-
apy and mortality among HIV-infected infants. N Engl J
Med 2008; 395: 2233–44.
25. Marcenko M, Samost L. Living with HIV ⁄ AIDS: the voices
of HIV-positive mothers. Soc Work 1999; 44: 36–45.
26. Hackl K, Somlai A, Kelly J, Kalichman S. Women living with
HIV ⁄ AIDS: the dual challenge of being a patient and a care-
giver. Health Soc Work 1997; 22: 53–62.
27. Prado G, Szapocznik J, Mitrani V, Mauer M, Smith L, Fea-
ster D. Factors influencing engagement into interventions for
adaptation to HIV in African American women. AIDS Behav
2002; 6: 141–51.