Stigma, HIV/AIDS treatment seeking behavior among youth living with HIV in Kampala City, Uganda

Abstract

This study sought to discover to what extent stigma affects HIV and AIDS treatment-seeking behavior among youths aged 18-24 in Kampala city. It also examines how anticipated stigma and non- disclosure of HIV status affects health-seeking behavior, and the experiences of living with HIV and AIDS.The study employed qualitative approaches involving purposive selection of study participants who included youths living with HIV. Data was collected through in-depth interviews, Focus Group Discussions, and Key Informant Interviews. It was analyzed using thematic and content methods that were phenomenological. This study was guided by theories of stigma including Goffman and Deacon’s sustainable theory of health – related stigma as well as as cognitive behavioral theory and coping. All the youths in this study suffered self-stigma the first time they were diagnosed with HIV. They further felt other forms of stigma namely: internal, social, and discrimination. Being HIV positive was associated with punishment for bad behavior. Apportioning blame to HIV positive youths as self-inflicted by the community was common, thus, affecting youths' urge to seek treatment. Youths’ fear of rejection and discrimination pervaded all aspects and their lives; from home to clinics, and community. Seeking treatment was not a common practice among HIV positive youths. Fear of rejection, lack of disclosure, denial and being asymptomatic, belief in witchcraft and other spiritual beliefs were key barriers to seeking treatment. This study highlights that the youth felt most stigmatized in comparison to other groups. Interactions and negative experiences in government healthcare settings contributed to a reduced engagement around seeking healthcare. To combat stigma and discrimination, interventions must focus on the individual, environment and policy levels. What is needed now is the political will and resources to support and scale up stigma reduction activities through health care settings in Uganda, to engage youth into empowerment groups of self determination and social change, work with social workers’ organizations and use law to advance legal protection. The key recommendations from this research include the empowerment of the stigmatized group, i.e. the YLWHA, as well as their involvement in the design and implementation of prevention programs. Furthermore the focus of health education for behavior change communication strategies are family members or those with significant relationships to YLWHA, and health care providers, who were the major groups found to discriminate against PLWHA.