1. Lorraine Sherr, UCL, UK Imca Hensels, UCL, UK Sarah Skeen, Stellenbosch, SA Mark Tomlinson, Stellenbosch, SA Ana Macedo, UCL, UK, Natasha Croome, UCL, UK. Community Based Organisation provision for children affected by HIV developmental delay

2. Child Community Care study 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 CBOs (588) provided - 28 randomly selected (24 in SA, 4 in Malawi) 989 children (4-13y; 50.9% girls) and their carers Indicators to track Demographics and psychosocial situation Developmental disability Ten Questions; WG/ UNICEF measure Cognitive Draw-a-person test Working memory Digit Span; School performance Enrolment, correct class, attendance, performance, slow/quick learner (Child Status Index) Organisation questionnaire – carers and providers

3. Overall living conditions

4. HIV+ve 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. Developmental delay 451 out of 989 children (45.6%) had 1 or more type of development disability.

6. Developmental delay by HIV status P all <.001

7. Developmental delay in children living in bereaved and/or sick families

8. Predictors of developmental delay HIV infection [OR:3.36, 95% CI: 2.16-5.24, p<.001] 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] Multivariable model adjusted for Demographics Socio-economic indicators Family burden of HIV, other illness and loss HIV-related stigma Multivariable model adjusted for Demographics Socio-economic indicators Family burden of HIV, other illness and loss HIV-related stigma

9. HIV and digit span (Higher scores better performance ) HIV+ children performed lower on digit span t=4.90 p<.001 Acknowledgement to Matt Kenney and Che Cheung for scoring tests

10. HIV and digit span - baseline VariableBSE(B)βtSig. (p) Child HIV status-0.700.35-0.0682.01.045 Country-4.100.32-0.4312.77<.001 Child gender0.520.240.0702.17.030 Child age-0.100.051-0.0661.95.051 Carer gender-0.400.51-0.0260.79.43 Carer age0.0020.0080.0090.26.80 Carer HIV status0.170.340.0180.79.43 Type of home-0.440.36-0.0401.22.22 Stigma-0.180.12-0.0511.56.12 Recent bereavement0.0100.290.0010.035.97 Household HIV-0.410.40-0.0351.03.31 R²=.22

11. Impact of HIV x Developmental delay 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<.001

12. HIV and draw-a-person test (Higher scores better performance ) t=3.66 p<.001 HIV+ children performed lower on the draw-a- person test

13. HIV and draw-a-person - baseline VariableBSE(B)βtSig. (p) Child HIV status-2.871.72-0.0531.67.096 Country-26.851.53-0.5617.60<.001 Child gender0.721.140.0190.63.53 Child age0.120.250.0150.48.63 Carer gender0.652.410.0080.27.79 Carer age-0.0030.039-0.0030.081.94 Carer HIV status1.091.660.0220.65.51 Type of home0.741.810.0130.41.68 Stigma0.330.560.180.59.56 Recent bereavement0.201.360.0050.15.88 Household HIV1.551.960.0260.79.43 R²=.33

14. HIV and educational outcomes - baseline HIV+ve children do significantly worse on all educational measures Composite measure: educational risks (0-4) All associations significant, p<.05

15. HIV and educational risks - baseline VariableBSE(B)βtSig. (p) Child HIV status0.610.100.215.88<.001 Country0.260.0970.0942.69.007 Child gender-0.330.071-0.164.67<.001 Child age0.0640.0160.144.03<.001 Carer gender0.340.150.0752.22.027 Carer age-0.0050.002-0.0762.20.028 Carer HIV status-0.0040.10-0.0020.044.97 Type of home-0.0510.11-0.0160.47.64 Stigma0.100.0350.0992.92.004 Recent bereavement-0.0760.085-0.0300.89.37 Household HIV0.12 0.0340.96.34 R²=.12

16. 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 housing (shack) Not attend school Have higher stigma scores at baseline Have a younger caregiver

17. Follow-up scores HV+ve=114, comparison=714 T= 3.50 p<.001 T=5.19 p<.001

18. Child HIV and digit span – follow-up F(1, 646)=2.70, p=.10

19. Child HIV and draw-a-person – follow-up F(1, 629)<0.001, p=.99

20. Child HIV and educational outcomes – follow-up *** ** * *p<.05, **p<.01, ***p<.001

21. HIV and educational risks – follow-up F(6, 774)=7.56, p=.006 Made up of: incorrect class, slow learner, struggles in school, attends school less regularly (score 0-4).

22. Self-esteem at follow-up p=.049

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

24. Uptake of services Follow-up (n=854)

25. Conclusions Developmental delay 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

27. Development delay in HIV-affected and non-affected children

28. 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 < physical problems Significantly worse on all school measures No difference on depression and self- esteem All associations significant, p<.05

29. 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.

30. HIV and disability at follow-up ns HIV not associated with disability. But HIV+ children more likely to suffer from multiple disabilities.

31. 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

32. No difference in: Improvement of digit span Improvement of draw-a-person score Reduction in depressive symptoms Reduction of physical problems Increase in quality of life

33. 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.

34. Disability and access to any child grant

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