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

Sarah Skeen UCT SA Lorraine Sherr , UCL, London , Mark Tomlinson , Stellenbosch, SA Ana Macedo UCL, UK , Natasha Croome UCL, UK . Futures at risk - D isability in children affected by HIV in South Africa and Malawi. Community Care study. 989 children (4-13y) and their carers

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

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  1. Sarah Skeen UCT SALorraine Sherr, UCL, London, Mark Tomlinson , Stellenbosch, SAAna MacedoUCL, UK, Natasha CroomeUCL, 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 partnersWorld 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

  3. Overall mental health and living conditions

  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

  10. 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 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 lowerat draw-a-person test F=23.9 p<.001 F=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 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.

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

  16. Predictors of disability at follow-up Any disability Moderate/Severe disability HIV status not associated Parental bereavement [OR:1.62, 95% CI: 1.05-2.50, p=.03] • 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] • 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 accessto 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 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 X2 (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

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