Lived Experiences of People with Disabilities and Hiv/aids in Kampala: a Case for the Deaf and Blind
Author: MUHANGI APOLLO
Supervisor: Lillian Nantume Wampande
Although efforts have been made through establishment of programs and campaigns to make sure that the spread and effects of HIV/AIDS is minimized among people living with disabilities, it is so unfortunate that such information has been rarely accessible by the blind or deaf community due to the formats in which such information is disseminated does not favor the deaf or blind people. (Wangulu 2009)This study brings out the voices of the deaf or blind people, their experiences with HIV/AIDS virus including the access to health services and the challenges they encounter while trying to live positively with the virus or accessing the information and treatment as regards to HIV/AIDS.
Objectives of the study
The study specifically thought to understand the experiences of the deaf and blind people living with HIV/AIDS and explore the challenges they face while accessing HIV treatment. The study sought to generate evidence from the true life experiences of a category of population which may in one way or another be thought not to be sexually active and not vulnerable to HIV due to their impairments, yet in actual senses they are exposed and vulnerable.
Phenomenological approach into qualitative research was used. Purposive sampling was used to identify respondents. There after a list of cases in the phenomenon was obtained from various health facilities in Kampala Capital City Authority where the respondents are getting HIV/AIDS care, in total they were six respondents. Data tools used were audio recording, notes writing, and observations. Data was analyzed using thematic analysis where themes and sub-themes were developed through data categorization. Results: The findings revealed that, the deaf or blind people who are living with HIV/AIDS had stigma and discrimination both at community and family levels. All respondents disclosed that they experience limited access to HIV/AIDS informationin the format that suites their disabilities, such as sign language and braille. The study findings also revealed that some Nurses are very rude and stigmatizing the deaf or blind people living with HIV/AIDS. On the other hand, the study found that life experiences with HIV show positive influence in areas of skills development as the deaf or blind learnt how to generate income through activities like kick boxing, playing keyboard and guitar.
The findings revealed that, communication gaps, stigma, poor adherence and limited access to HIV/AIDS related information were most pressing among the deaf or blind people living with HIV/AIDS. The study findings also revealed that some of the respondents still lack confidentiality as a result of low education levels. The overall implications of living with HIV/AIDS have both positively and negatively influenced the deaf or blind HIV victims.
The deaf or blind need to be empowered through forming their own peer networks with support from partners or relatives, so that they share experiences and strengthen their confidence. The deaf and blind should be provided with appropriate, equal and similar services and information tailored to suit their special needs to ensure observation of their rights to health.