1. Sarah Skeen UCT SA Lorraine 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

2. 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

4. 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%)

5. 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%

6. Disability by HIV status P all <.001

7. Disability in HIV-affected and non-affected children

8. Disability in children living in bereaved and/or sick families

9. 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 Multivariate model adjusted for Demographics Socio-economic indicators Family burden of HIV, other illness and loss HIV-related stigma

10. 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 All associations significant, p≤.001

11. 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 F=23.9 p<.001F=17.5 p<.001 Acknowledgement to Matt Kenney and Che Cheung for scoring tests

12. 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) F (3)=15.8, p≤.0001

13. 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

14. 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.

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

17. 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.

18. Disability and access to any child grant

19. 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 X 2 (2)=13.3, p=.001

20. Uptake of services Baseline (n=989)Follow-up (n=854) Follow Up (n=854)

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

22. 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