A Qualitative Examination of Perceived Stigma and its Sources Among Adolescents Living With HIV in Western Kenya

Abstract

Introduction. Adolescents (10-19 years) living with HIV (ALWH) face unique challenges in controlling HIV long-term, including stigma and perception of stigma within their communities. Methods. We conducted a qualitative investigation of the sources of perceived HIV-related stigma with ALWH in western Kenya. Forty-six ALWH on ART, aware of their status, and engaged in care were enrolled. Interviews explored perceived stigma by probing the individuals and experiences that adolescents identify as causing or perpetuating their ongoing fears. Results. Participants (54% male, mean age 17.4) reported ongoing fears of stigmatization related to friends and peers not living with HIV. They described previous enacted and first-hand observations of stigma, most often occurring in pre-adolescence, by age mates or peers at school as the most common cause for their ongoing fears. Conclusions. Perceived stigma is prevalent among ALWH and develops from experiences in pre-adolescence. Anti-HIV stigma interventions addressing educators and children in school settings to combat perceived stigma at its source should be investigated.

A qualitative inquiry of experiences of HIV-related stigma and its effects among people living with HIV on treatment in rural Kilifi, Kenya

“…The relationship between perceived stigma, and status non-disclosure has been reported elsewhere ( 77 ). Moreover, this finding supports other studies that have found a link between mental health and perceived HIV stigma ( 33 , 78 ). Additionally, most participants expressed their mental health challenges using idioms like “thinking too much,” “dislike you,” “become sad,” and “hate you,” which can be equated to the local understanding of mental health challenges.…”

HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya

“…These concerns are shared by YLWH in other work in Kenya, who have expressed fear of sharing their HIV status, whether purposefully or accidentally, due to experienced, anticipated, and internalized stigma. 8,9,27,31–33 It is well-documented that HIV-related stigma impacts care-seeking and other behaviors among YLWH, and this study's findings demonstrate that fear of stigma also affects how YLWH engages in research. 27,34 Globally, studies have shown that HIV disclosure can be associated with feelings of isolation, anxiety, depression, negative self-image, and internalized blame.…”

“…8,9,27,31–33 It is well-documented that HIV-related stigma impacts care-seeking and other behaviors among YLWH, and this study's findings demonstrate that fear of stigma also affects how YLWH engages in research. 27,34 Globally, studies have shown that HIV disclosure can be associated with feelings of isolation, anxiety, depression, negative self-image, and internalized blame. 35–39 It is, therefore, critical to ensure that adequate protections are in place to protect the confidentiality of research participants’ HIV status and minimize the risk of accidental disclosure and associated negative outcomes.…”

“…26 Direct impacts of stigma or the anticipation of stigma often include fear of disclosing one's HIV status to others and of taking HIV medications in front of others, often leading to physical and clinical effects. 27 Impacts of stigma may also be indirect, such as increased mental health symptomology. 26…”

“…The majority of participants cited the clinic as the most appropriate location for identifying and recruiting research participants because stigma and discrimination are highly prevalent in other settings, including schools, churches, and communities; these findings align with previous research in Kenya which demonstrates that YLWH experience and anticipate stigma in a variety of settings. 8,27,32,40,41 Participants were most concerned about research recruitment in the school setting, as YLWH experiences stigma and discrimination from both peers and teachers. Research in Kenya, South Africa, Zambia, and Ghana has demonstrated that stigma is highly prevalent in school settings and is enacted by both students and teachers, suggesting that school-based stigma interventions may need to be prioritized.…”