Disability-related stigma and discrimination in sub-Saharan Africa and south Asia: a systematic literature review May 2021 Report authors: Bhavisha Virendrakumar Cathy Stephen Emma Jolley Elena Schmidt Study contributors: Vladimir Pente Elizabeth Clery Acknowledgement: We would like to thank Irish Aid for the funding provided for this review. Many thanks to the systematic review Steering Committee, who provided valuable comments on the protocol and draft report. Recommended citation: Sightsavers. Disability-related stigma and discrimination in sub-Saharan Africa and South Asia: a systematic literature review. Haywards Heath, UK: Sightsavers, 2021. 2 Disability-related stigma and discrimination in sub-Saharan Africa and South Asia: a systematic literature review | May 2021 Contents Executive summary .............................................................................................................. 6 Introduction ........................................................................................................................ 6 Methods ............................................................................................................................. 7 Results ............................................................................................................................... 7 Characteristics of included studies ................................................................................. 7 Factors leading to stigma and discrimination ................................................................. 8 Manifestations of stigma and discrimination ................................................................... 8 Intersectionality and outcomes of stigma and discrimination ......................................... 8 Interventions and their effectiveness .............................................................................. 9 Toolkits and metrics ..................................................................................................... 10 Conclusion ....................................................................................................................... 10 Introduction......................................................................................................................... 12 Concept of disability ......................................................................................................... 12 Concept of stigma and discrimination ............................................................................... 13 Analytical frameworks of disability-related stigma and discrimination .............................. 13 Previous reviews .............................................................................................................. 17 Study objectives ................................................................................................................. 18 Research questions .......................................................................................................... 18 Methods ............................................................................................................................... 19 Search strategy ................................................................................................................ 19 Sifting and selection ......................................................................................................... 19 Data extraction and quality assessment ........................................................................... 20 Data synthesis and analytical framework of the review .................................................... 21 Results ................................................................................................................................ 22 Characteristics of included studies ................................................................................... 23 Study design ................................................................................................................ 24 Study settings .............................................................................................................. 24 Study populations......................................................................................................... 24 Quality assessment ...................................................................................................... 24 3 Disability-related stigma and discrimination in sub-Saharan Africa and South Asia: a systematic literature review | May 2021 Factors leading to stigma and discrimination ................................................................... 25 Drivers of stigma and discrimination ............................................................................ 25 Contextual facilitators of stigma and discrimination ..................................................... 29 Impact of multiple drivers and contextual factors ......................................................... 32 Manifestations of stigma and discrimination ..................................................................... 33 Felt (perceived) stigma ................................................................................................. 33 Enacted stigma ............................................................................................................ 35 Affiliated stigma ............................................................................................................ 37 Internalised stigma ....................................................................................................... 39 Intersectionality of disability with other individual characteristics ..................................... 40 Gender ......................................................................................................................... 40 Age ............................................................................................................................... 41 Race ............................................................................................................................. 41 Religion ........................................................................................................................ 41 Marital status ................................................................................................................ 42 Education ..................................................................................................................... 42 Occupation ................................................................................................................... 43 Economic status ........................................................................................................... 43 Area of residence ......................................................................................................... 43 Health status and severity of impairment ..................................................................... 44 Interventions and their impact .......................................................................................... 46 Education and training ................................................................................................. 46 Education with social contact ....................................................................................... 50 Communication, persuasion and modelling ................................................................. 51 Alternative models of care ............................................................................................ 55 Economic empowerment .............................................................................................. 59 Toolkits and guidelines to tackle stigma ........................................................................... 60 Legal and policy provisions .......................................................................................... 60 Toolkits ......................................................................................................................... 60 Guidelines .................................................................................................................... 62 Examples of good practices ......................................................................................... 63 4 Disability-related stigma and discrimination in sub-Saharan Africa and South Asia: a systematic literature review | May 2021 Measuring stigma ............................................................................................................. 64 Discussion and conclusion ............................................................................................... 68 Implications for programmes ............................................................................................ 69 References .......................................................................................................................... 70 Appendices ......................................................................................................................... 78 Appendix 1. Search strategy ............................................................................................ 78 Appendix 2. Drivers and facilitators of stigma .................................................................. 78 Appendix 3. Manifestations of stigma ............................................................................... 78 Appendix 4. Interventions to tackle stigma ......................................................................