Sarah Skeen UCT SALorraine Sherr, UCL, London, Mark Tomlinson , Stellenbosch, SA Ana Macedo UCL, UK, Natasha Croome UCL, UK.

Futures at risk - Disability in children affected by HIV in South Africa and Malawi

Community Care study• 989 children (4-13y) and their carers• 11 funding partners* provided all CBO’s (588) and 28 randomly selected CBO

organisations (24 in SA, 4 in Malawi) • Indicators to track • Demographics and psychosocial situation

• Quality of Life• Strengths and Difficulties

• Developmental disability • Ten Questions; WG/ UNICEF measure• Cognitive Draw-a-person test• Working memory Digit Span;

• School performance • Enrolment, correct class, attendance, performance (Child Status Index)

• Organisation questionnaire – carers and providers

*World Vision, Comic Relief, Save the Children, Firelight Foundation, Help Age, UNICEF, REPSSI, Bernard van Leer, STOP AIDS, AIDS Alliance, Diana Memorial Fund

HIV+ children

• 135 children are HIV+ (13.7%)

• Only a third of children (n=43) know their HIV status

• 189 carers are HIV+ (19.3%)

• 332 children live in households with HIV+ people (33.6%)

HIV+ child 9.6%

HIV+ carer13.9%

HIV+ child & HIV+ carer

5.4%

Another HIV+ adult

4.9%

None 66.2%

Child developmental disability• 451 out of 989 children (45.6%) had 1 or more

type of disability. • No country differences: SA - 45.9% vs. Malawi - 43.9%

Fits/seizuresLearning

MovementNo speech

UnderstandingVision

HearingMotor milestones

SpeechCognitive

1.6%

4.2%

4.8%

4.9%

6.3%

7.6%

11.0%

10.5%

10.1%

18.0%

Any 1 out of 10 2 out of 10 3 or ˃ out of 100

20

40

60

80

100

45.6%

26.5%11.0% 8.0%

% children with one or more types of disabilit-ies

Disability by HIV status

Any

Cognitive

Motor mile

stones

Hearing

Speech

Walking

0

20

40

60

80

100

70.4

34.827.4

22.216.3

11.1

41.7

15.37.8 9.3 9.1

3.7

HIV+ (n=135)Non-HIV+ (n=854)

P all <.001

Disability in HIV-affected and non-affected children

HIV-infected child (n=135)

HIV-affected child (n=222)

Non-affected child (n=632)

95 (70.4%)

108 (48.6%)

248 (39.2%)

% c

hild

ren

scre

enin

g po

sitiv

e X2 (2)=44.5, p≤.0001

Disability in children living in bereaved and/or sick families

Loss

of family

(n=178)

Sickness

in the fa

mily (n

=112)

Double burden of lo

ss and sic

kness (n=103)

No loss

nor sick

ness (n=586)

86 (48.3%)59 (52.7%)

62(60.2%)

234 (39.9%)

% c

hild

ren

scre

enin

g po

sitive X2 (3)=19.1, p≤.0001

Predictors of disability

• HIV infection • [OR:3.36, 95% CI: 2.16-5.24, p≤.0001]

• Living in South Africa• [OR: 1.92, 95% CI: 1.12-3.29, p=.02]

• Family sickness• [OR: 1.48, 95% CI: 1.05-2.09, p=.03]

• Poor housing conditions• [OR: 1.43, 95% CI: 1.07-1.90, p=.02]

• Multivariate model adjusted for• Demographics• Socio-economic indicators• Family burden of HIV, other illness and

loss• HIV-related stigma

HIV and other developmental outcomes

• HIV+ children had significantly more emotional and behavioural problems (e.g., conduct, hyperactivity-inattention, or peer problems) than the other group.

• HIV+ children had significantly lower health-related quality of life, both in physical and psychosocial domains than the other group.

• HIV+ children did worse at school compared to the other group

Incorrect class

Slow learners

Struggle in class

Attend less regularly

0

20

40

60

80

100

50

41.5

32.3

8.5

25.8 24.7

14.1

3.6

HIV+ (n=135)

non-HIV+ (n=854)

All associations significant, p≤.001

HIV and digit span/draw a person test (Higher scores better performance )

• HIV+ children performed lower at digit span subtest

• HIV+ children performed lower at draw-a-person test

HIV+ (n=135) non-HIV+ (n=854)0

5

10

15

20

M=7.2 SD= 3.9

M=9.0 SD=3.9

HIV+ (n=135) non-HIV+ (n=854)40

50

60

70

80

90

100

110

120

130

M=79.2SD=21.4

M=87.1SD=17.9

F=23.9 p<.001 F=17.5 p<.001

Acknowledgement to Matt Kenney and Che Cheung for scoring tests

Impact of HIV x Developmental disability• Lowest performance in digit span - double burden• Group with no HIV nor disability scored near the mean of the norm

group (mean of 10 and SD of 3) (Wechsler, 1991)

No HIV nor disa

bility (n

=464)

HIV- child

& any disa

bility (n

=317)

HIV+ child

& no disa

bility (n

=39)

Double burden of H

IV and disabilit

y (n=87)

048

121620 9.56 8.25 7.67 6.98

F (3)=15.8, p≤.0001

1-year follow up• Data collected between 2013-14

• 854 children and their primary caregivers were followed up (86.3% response rate)

• Children lost to follow-up more likely to:• Live in South Africa• Live in informal (shack) housing• Not attend school• Have higher depression scores at baseline• Have higher stigma scores at baseline

Disability at follow-up• Six core functional domains: seeing, hearing, walking,

cognition, self-care and communication• 547 out of 854 children (64.1%) had one or more disabilities.

Playing (o

lder)

Communication

Self c

are

Comprehensio

n

Relationships

Playing (y

ounger)

Seeing

Hearing

Learn

ing

Behaviour

Emotions

Attention

Coping

Walki

ng

Remembering

0

20

40

60

80

100

Cannot do at all

A lot of difficulty

Some difficulty

No difficulty

Predictors of disability at follow-up

Any disability

• HIV status not associated• Gender (higher in boys)• [OR:1.44, 95% CI: 1.07-1.94, p=.02]

• HH unemployment• [OR:1.49, 95% CI: 1.06-2.10, p=.02]

• Food insecurity• [OR:1.63, 95% CI: 1.02-2.62, p=.04]

Moderate/Severe disability

• HIV status not associated• Parental bereavement • [OR:1.62, 95% CI: 1.05-2.50, p=.03]

• Each multivariate model adjusted for:• Developmental disability at baseline• Demographics• Socio-economic indicators• Family burden of HIV, other illness and loss• HIV-related stigma

Disability and access to grants• Children in Malawi had no access to financial support

• Of the 450 children in South Africa with disability (any degree)• 339 (75.3%) received a child support grant• 49 (10.9%) received a foster care grant• 17 (3.8%) received a care dependency grant

• Of the 120 children in South Africa with a severe disability• 85 (70.8%) received a child support grant• 23 (19.2%) received a foster care grant• 3 (2.5%) received a care dependency grant

• Children with severe disability were more likely to receive a foster care grant (19.2%) than those with a mild or no disability (9.9%), p=.007.

Disability and access to any child grant

Any disability (n=450) Severe disability (n=120)0

10

20

30

40

50

60

70

80

90

100

4.7% 5.8%

80.7% 80.8%

14.7% 13.3%

None One grant Two grants

HIV and access to grants

• Of the 79 HIV+ children (South Africa),

• 44 (55.7%) receive a child support grant

• 21 (26.6%) receive a foster care grant

• 10 (12.7%) receive a care dependency grant

Two grants (n=38)

One grant

(n=544)

None (n=111)

0

10

20

30

40

50

60

70

80

90

100

13.9

67.1

19

4.3

78.1

17.6

HIV+ (n=79)Non-HIV+ (n=629)

X2 (2)=13.3, p=.001

Uptake of services

Baseline (n=989) Follow-up (n=854)

Psychological

Medical

Material supplies

Child interventions

Parenting interventions

Home visiting

Education services

Referral

Assistance grants

0 50 100

*

*

Non-HIV+HIV+

Psychological

Medical

Material supplies

Child interventions

Parenting interventions

Home visiting

Education services

Referral

Assistance grants

0 50 100

*

*

*

*

*

*

*

Non-HIV+HIV+

Psychological

Medical

Material supplies

Child interventions

Parenting interventions

Home visiting

Education services

Referral

Assistance grants

*

* No Disability (n=711)

Moderate/Severe Disability (n=143)

Follow Up (n=854)

CBO as a source of support:Disability inclusion policy & disability/rehabilitation services provision

Any disability (n=574)

Severe disability (n=120)

Any disability (n=574)

Severe disability (n=120)

Policy Services

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

38.4 44.8 39.547.6

61.6 55.2 60.552.4

NoYes

Conclusions• Disability level is high• Compounded by HIV and the ramifications of HIV• Not all HIV+ve children receive support• Children in need get more medical and psychological support

but not educational input• CBO are a good source of support but need • Universal policy• Universal services• Enhanced understanding and provision for children with HIV

and disability• Accurate targeting of service to need