Experiences and effects of HIV-related stigma among youth living with HIV/AIDS in Western Uganda: A photovoice study

Abstract

HIV-related stigma has been identified as a significant stressor affecting Quality of Life of Youth Living With HIV/AIDS (YLWHA). Gaining a contextualized understanding of how this stigma is experienced by YLWHA in Western Uganda is crucial in addressing it in this group and setting. In this study, we explored the lived experiences of YLWHA with HIV-related stigma. Photovoice was used to gain insight into the lived experiences of HIV-related stigma in 11 YLWHA (15-19 years), purposively selected from a hospital-based peer support group. Group interview transcripts, notes and photographs were subjected to phenomenological hermeneutic analysis. Encounters with enacted, anticipated and internalized stigmas and their myriad sequels were prevalent in the photos and narratives of participants. Our findings were categorized and presented in 5 main themes that were identified through the analysis: being devalued, experiencing fear, experiencing injustices, feeling lonely, and lacking future perspectives. HIV-related stigmas were experienced in various socio-ecological domains but predominantly in homes and schools that ought to be supportive surroundings for youths. A multilevel approach, targeting the entire society where the root causes of stigma can be found and specific contexts like schools and homes where youth are confronted with stigma on a daily basis is proposed for a wholistic intervention.

Fig 1

“People view us as useless rubbish that should be separated from the rest of the people. I think they are waiting for us to die so that they can have their space. This starts with our own parents because they know that their status can be revealed through us. So, like they do not want us to be in public yet they are the ones who gave us the disease”.

Fig 2. “I always pass here when going to the health centre but each time I fear that these rotting pieces of wood will break and I fall in the stream just like I fear that people will one time get to know my HIV status as I interact with them”.

Fig 3

“Because people tell me that I can die anytime, I fear darkness and I have to light a candle every day before I sleep. This also is very dangerous because one time I almost got burnt while asleep, yet I stay alone in my room”. (Dagie, 17-year-old boy).

Fig 4

“This is the type of food I was always made to eat by my stepmother when others were eating better food. You know I had to swallow drugs and with such food it was not easy to continue with my medicine until when I left that home” (Small, 17-year-old girl).

Fig 5

“Like an animal tied on the tree, you cannot go further in your plans. You just keep there, and you do not enjoy life” (Suzan, 16-year-old girl).

Fig 6

“People used to throw me here and there like the water that flows continuously without resting. Wherever I would go to stay they would tell me to go elsewhere, where I can fit. So, I would continue to move endlessly in such a bad situation. I stayed with a total of not less than four families and each kept sending me away” (Abooki, 19-year-old boy).