Researching disability and health issues in Africa: benefits of a Norway/South Africa collaboration

Transcription

1 Researching disability and health issues in Africa: benefits of a Norway/South Africa collaboration Arne H. Eide, Leslie Swartz, Stine Braathen Department of Psychology, Stellenbosch University and SINTEF Health/Technology and Society Department of Psychology Departement Sielkunde

2 HIV/AIDS and disability: a study in three South African provinces Department of Psychology Departement Sielkunde

3 Background Contact between SINTEF and Stellenbosch University Psychology Department began prior to NRF/Norway process, through common interest in disability studies SINTEF had a grant from the 1 st phase of the program with UCT SINTEF has extensive experience in disability-related work in southern Africa Common link with HSRC Child, Youth, Family and Social Development Programme 3

4 The NRF/Norway grant HIV and AIDS and disability in South Africa Partners: SINTEF Health (PI: Arne Eide) SU Psychology (PI: Swartz) HSRC (Margie Schneider) Disabled People South Africa (DPSA) ( Hon. Hendrietta Bogopane-Zulu, MP, SANAC member now DM Public Works) Progress: Survey of DPOs completed and analysed Survey data collected in three provinces Data analysis workshop complete Feedback and capacity development workshops carried out Publications 4

5 HIV and AIDS and Disability in South Africa AIMS OF THE STUDY To explore knowledge, attitudes and practices in relation to HIV, sexual practices of people with disabilities and their access to VCT. To understand the impact of HIV on people with disabilities To examine existing provision for HIV/disability programmes To use the information for future planning and programmes STUDY APPROACH Phase 1: Survey of policies and practices of DPOs and service organizations regarding HIV Phase II: Study of knowledge, attitudes and practices in three provinces 5

6 HIV and AIDS and Disability in South Africa SOME RESULTS Disabled people are to a large extent excluded from general HIV prevention programmes Level of knowledge about HIV transmission and prevention is relatively low High levels of unsafe sexual behavior revealed Males have better knowledge but females more likely to test for HIV VCT: 21 % had visited a VCT centre 40 % had ever been tested for HIV Risk factors for disabled people: Access problems Low level of education means low level of information Attitudes Stigma Abuse, lack of control Sensory and intellectual impairments 6

7 The NRF/Norway grant (contd) Outputs thus far SU doctorate (Rohleder) Report for DPOs Six articles in accredited journals Chapter in book on HIV in SA Chapter in book on disability and development Spin-off benefits More projects in developing network Capacity development for disabled people in SA and southern Africa SINTEF researcher Ph. D. student at SU 7

8 Linked & spin-off research projects (2) Global Health project (RCN): Accessibility to health services among people with disabilities in southern Africa ( ) SINTEF, SU (Psychology and Centre for Disability Studies), University of Malawi Qualitative and quantitative data collected in rural Eastern Cape and Malawi These data have been used to help develop instruments for EU FP7 project 8

9 Linked & spin-off research projects (3) Research and curriculum development in mental health for Southern Sudan (NUFU) ( ) Partners: University of Oslo, SINTEF, SU, Ahfad University, University of Bahr el Ghazal 9

10 Linked & spin-off research projects (4) EU FP7 project - Enabling universal and equitable access to healthcare for vulnerable people in resource poor settings in Africa (EquitAble) ( Launch in Khartoum March 2009 Partners: Trinity College Dublin, SINTEF, SU, HSRC, African Decade on Disability, Ahfad University (Khartoum), University of Malawi, University of Namibia 10

11 The SAFOD connection SINTEF partnership with SAFOD (Southern African Federation on Disability) through its living conditions studies Through SINTEF link, SU appointed Lead Research partner for the SAFOD Research Programme (SRP) (DFID) Main phase of SRP launched January 2009 in Maputo; launch of SINTEF/FAMOD living conditions study Role of UN Special Rapporteur on Disability 11

12 Building capacity; promoting redress Key principle of mutuality in learning with each partner capacitating other partners Research capacity development programme for SAFOD SAFOD teaches Stellenbosch students about disability and poverty issues SU staff teach on University of Oslo summer school programme SINTEF PI Guest Professor at SU 12

13 Building capacity; promoting redress (2) Stellenbosch black academics benefit from Oslo International Summer School (Univ of Oslo) Use of current projects to develop employability of disabled people in South Africa and on the continent Future capacity development initiatives planned to build on existing skills of local network of research partners and fieldworkers Joint research projects drives capacity building in the disability movement in the region 13

14 Future plans and principles Develop mental health work into multi-country EU FP7/8 project Poverty, disability and cash transfers Regional study on HIV/AIDS & Disability Mutual learning and widening and deepening of networks (eg AfriNead) Community of practice based on common principles, good governance, disciplined 14 work ethic and productivity

15 Future plans and principles (2) 15 Much of what is learned in such processes is through relationships built up over time Long-term relationships and agreements are important (eg SINTEF/SU MOU) Need to study capacitating processes as well as research outputs

16 Dissemination from the HIV/AIDS & Disability study Journal articles Rohleder, P., Swartz, L., Schneider, M., Groce, N., & Eide, A. H. (2010). HIV/AIDS and disability organisations in South Africa. AIDS Care, 22, Rohleder, P (2009). They don t know how to defend themselves : Talk about HIV risk and disability in South Africa. Disability and Rehabilitation, Early online, 1-9. Rohleder, P., Braathen, S. H., Swartz, L., & Eide, A. H. (2009). HIV/AIDS and disability in Southern Africa: A review of relevant literature. Disability and Rehabilitation, 31, Rohleder, P., & Swartz, L. (2009). Providing sex education to persons with learning disabilities in the era of HIV/AIDS: Tensions between discourses of human rights and restriction. Journal of Health Psychology, 14, Rohleder, P., Swartz, L., Eide, A. H., & MacGregor, H. (2009). HIV/AIDS and persons with disabilities. In P. Rohleder, L. Swartz, S. C. Kalichman,., & L. C. Simbayi, (Eds.). HIV/AIDS in South Africa 25 years on: Psychosocial perspectives (pp ). New York: Springer. Rohleder, P., Swartz, L., & Philander, J. (2009). Disability and HIV/AIDS: A key development issue. In M. MacLachlan & L. Swartz (Eds.). Disability and international development: Towards inclusive global health (pp ). New York: Springer. Eide A H, Schür C, Ranchod C, Rohleder P, Swartz L, Schneider M (2010) Level of knowledge and access to HIV prevention and services among disabled people in South Africa. AIDS Care. (under review) 16

17 Dissemination ctd Books & chapters in books Rohleder P, Swartz L, Eide A H, MacGregor H (2009) HIV/AIDS and persons with disabilities. In: P. Rohleder, L Swartz, S C Kalichman, L C Simbay (Eds.) HIV/AIDS in South Africa 25 years on: Psychosocial perspectives (pp ). New York: Springer. Rohleder P, Swartz L, Philander J (2009) Disability and HIV/AIDS: A key development issue. In: M MacLachlan & L Swartz (Eds.) Disability and international development: towards inclusive global health (pp ). New York: Springer. Popular science reports HIV/AIDS and sexuality amongst people with disabilities in South Africa Summary eport November (SINTEF, DPSA, HSRC, and Stellenbosch University) Presentations Afrinead Society for Disability Studies USA PHASA Other dissemination Dissemination/feedback workshops (arranged by DPSA) 17 Kwa Zulu Natal Western Cape Gauteng December 2009: Launch of report arranged by Hon Minister of Public Works Hendrietta Bogopane Zulu, attended by the Hon Minister of Health, SA National AIDS Council.