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 World Vision, Comic Relief, Save the Children, Firelight

Foundation, Help Age, UNICEF, REPSSI, Bernard van Leer, STOP AIDS Now, AIDS Alliance, Diana Memorial Fund

• All CBO’s (588) provided - 28 randomly selected (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

Overall mental health and living conditions

Family loss 18.2%

Family illness11.4%

Both10.5%

None59.9%

Not in school

Living in a shack

Food insecure

Uncomfortable home

HH unemployment

Does not have own bed

4%

15.5%

26.9%

41.4%

46.3%

73.2%

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 milestones

Hearing Speech Walking0

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%)

% ch

ildre

n sc

reen

ing

posi

tive 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 • Significantly > emotional

and behavioural problems

• Significantly < health-related quality of life, both in physical and psychosocial domains

• Significantly worse on all school measures

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)405060708090

100110120130

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 disability (n=464)

HIV- child & any disability (n=317)

HIV+ child & no disability (n=39)

Double burden of HIV and disability (n=87)

0

2

4

6

8

10

12

14

16

18

20

9.568.25 7.67

6.98

F (3)=15.8, p≤.0001

1-year follow up

• Data collected between 2013-14

• 854 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 (

older)

Communication

Self c

are

Comprehension

Relationships

Playing (

younge

r)

Seeing

Hearing

Learn

ing

Behaviour

Emotions

Attention

Coping

Walking

Remembering

0

20

40

60

80

100

Cannot do at all

A lot of difficulty

Some difficulty

No difficulty

HIV and disability at follow-up

Remembering

Coping with change

Learning

Seeing

Comprehension

0 20 40 60 80 100

38.3

30.4

25.2

14.8

7.8

26.7

18.9

15.1

7.9

3

non-HIV+ (n=737)HIV+ (n=115)

Any 1 out of 14 2 out of 14 3 or > out of 14

0

20

40

60

80

100

71.3

17.4 18.3

35.7

63

25.117.4 20.5

ns

HIV not associated with disability. But HIV+ children more likely to suffer from multiple disabilities.

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 HIV+ children• 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