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Robert Keatley

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Robert Keatley Deaf People in Western Region, Kenya: Language, Community and HIV/AIDS Robert Keatley Thesis submitted for the degree of Doctor of Philosophy Department of Epidemiology and Public Health University College London 2016 1 Declaration of authorship I, Robert Keatley confirm that the work presented in this thesis is my own. Where information has been derived from other sources, I confirm that this has been indicated in the thesis. Signature: Robert Keatley Date: 27th April 2016 2 Abstract Kenya is contending with a very serious and shifting HIV/AIDS epidemic with marginalized communities, like the Deaf community, traditionally beyond the reach of public health campaigns remaining very much at risk of infection. Whilst some research has considered the sexual and reproductive health needs of the Deaf community, there is a paucity of information about the various subgroups within the deaf population, particularly those marginalized deaf individuals who are on the fringes of the community. This study explored how much deaf Kenyans know about HIV/AIDS compared to their hearing compatriots in Western Region, Kenya. Qualitative and quantitative data was collected by means of a survey questionnaire administered through semi-structured interviews from a total sample of 160 people, including 82 deaf and 78 hearing people from five counties in Western Region. Data was analysed by means of theme content analysis (qualitative data) and descriptive statistics (quantitative data). The results showed that there are generally lower levels of awareness and uncertainty of knowledge about HIV transmission and HIV prevention in the deaf population as compared to the hearing community with isolated deaf individuals having less awareness and knowledge compared to their deaf compatriots living in urban areas or as part of a Deaf community. This study has the potential to make a valuable contribution to how people view deafness in developing countries. Too often, the assumption is that deaf people are a homogenous group, conversant with local sign language and Deaf culture. However, this study found that whilst deaf people may be an at risk group, isolated homesigners are a sub-group who appear to have less language and information about HIV/AIDS and this fact may be putting them at greater risk of HIV infection, and thereby making them even more at risk than an already ‘at risk’ group. 3 Table of Contents Chapter 1 Introduction ............................................................................................................ 17 1.1 Background ....................................................................................................................... 17 1.2 Structure of the thesis .................................................................................................. 19 Chapter 2 Understanding disability & HIV/AIDS in the global and Kenyan context ....................................................................................................................... 23 2.1 Introduction ...................................................................................................................... 23 2.2 Disability ............................................................................................................................ 24 2.2.1 Global disability ...................................................................................................... 24 2.2.2 Disability in Kenya ................................................................................................ 25 2.3 Deafness ............................................................................................................................. 27 2.3.1 Global deafness ....................................................................................................... 27 2.3.2 Deafness in Kenya ................................................................................................. 29 2.4 HIV/AIDS ............................................................................................................................ 35 2.4.1 Global HIV/AIDS .................................................................................................... 35 2.4.2 HIV/AIDS in Kenya ................................................................................................ 35 2.5 Disability and HIV/AIDS in Kenya ........................................................................... 38 2.6 Poverty and risk to HIV infection ............................................................................ 40 2.7 Education and risk to HIV infection ....................................................................... 40 2.8 International & national commitments: HIV/AIDS & deaf people ............ 43 2.8.1 UNCRPD ..................................................................................................................... 43 2.8.2 The Kenyan Constitution .................................................................................... 45 2.8.3 The Persons with Disability Act (2003) ....................................................... 47 2.8.4 Enforcement ............................................................................................................ 48 2.9 HIV/AIDS funding in Kenya ....................................................................................... 48 2.10 Kenya AIDS Strategic Framework 2014/15 - 2018/19 and the deaf population ......................................................................................................................... 50 2.11 Conclusion ......................................................................................................................... 53 Chapter 3 Overview of the current discourse on disability & HIV/AIDS ........... 55 3.1 Introduction ...................................................................................................................... 55 3.2 Conceptual framework: The social determinants of health ......................... 55 3.3 Disability models ............................................................................................................ 60 4 3.4 Lack of HIV/AIDS information .................................................................................. 61 3.4.1 Disabled community ............................................................................................ 62 3.4.2 Deaf community ..................................................................................................... 65 3.4.3 Kenya .......................................................................................................................... 72 3.5 The Study ........................................................................................................................... 75 3.5.1 Broad aim .................................................................................................................. 75 3.5.2 Research question ................................................................................................. 75 3.5.3 Specific objectives ................................................................................................. 75 3.5.4 Justification of the research question ........................................................... 75 3.5.5 Positionality ............................................................................................................. 76 3.6 Conclusion ......................................................................................................................... 77 Chapter 4 Methodology & methods .................................................................................... 78 4.1 Introduction ...................................................................................................................... 78 4.2 Research methodology ................................................................................................. 78 4.3 Research strategy & study design ........................................................................... 80 4.4 Selection of participants .............................................................................................. 80 4.5 Sampling: Purposive with snowball technique ................................................. 81 4.6 Study area .......................................................................................................................... 85 4.6.1 Statistical information ......................................................................................... 85 4.6.2 Negotiating access ................................................................................................. 87 4.6.3 Study advisory team ............................................................................................. 88 4.7 Study approval and ethical issues ........................................................................... 89 4.7.1 Ethics approval ....................................................................................................... 89 4.7.2 Ethical issues ........................................................................................................... 90 4.8 Methods of data collection ......................................................................................... 92 4.9 Preparation for primary data collection ............................................................... 92 4.9.1 The semi-structured interview ........................................................................ 92 4.9.2 Development of the questionnaire ...............................................................
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