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

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

Overall living conditions

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%)

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

Developmental delay by HIV status P all <.001

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

Predictors of developmental delay HIV infection [OR:3.36, 95% CI: , p<.001] Living in South Africa [OR: 1.92, 95% CI: , p=.02] Family sickness [OR: 1.48, 95% CI: , p=.03] Poor housing conditions [OR: 1.43, 95% CI: , 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

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

HIV and digit span - baseline VariableBSE(B)βtSig. (p) Child HIV status Country <.001 Child gender Child age Carer gender Carer age Carer HIV status Type of home Stigma Recent bereavement Household HIV R²=.22

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

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

HIV and draw-a-person - baseline VariableBSE(B)βtSig. (p) Child HIV status Country <.001 Child gender Child age Carer gender Carer age Carer HIV status Type of home Stigma Recent bereavement Household HIV R²=.33

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

HIV and educational risks - baseline VariableBSE(B)βtSig. (p) Child HIV status <.001 Country Child gender <.001 Child age <.001 Carer gender Carer age Carer HIV status Type of home Stigma Recent bereavement Household HIV R²=.12

1-year follow up Data collected between 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

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

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

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

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

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).

Self-esteem at follow-up p=.049

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

Uptake of services Follow-up (n=854)

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

Development delay in HIV-affected and non-affected children

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

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.

HIV and disability at follow-up 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: , p=.02] HH unemployment [OR:1.49, 95% CI: , p=.02] Food insecurity [OR:1.63, 95% CI: , p=.04] Moderate/Severe disability HIV status not associated Parental bereavement [OR:1.62, 95% CI: , 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

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

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

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