Experiences of HIV-related stigma among HIV-positive older persons in Uganda – a mixed methods analysis

Abstract

There is limited data on stigma among older HIV-infected adults in sub-Saharan Africa. We describe the experiences of stigma and disclosure in a cohort of HIV-positive older people in Uganda. Using data from the Wellbeing of Older Peoples' Study of Kalungu (rural site) and Wakiso district (peri-urban site) residents, we measured self-reported stigma levels for 183 respondents (94 on antiretroviral therapy (ART); 88, not on ART) using a stigma score generated using three questions on stigma perceptions where 0 meant no stigma at all and 100 was maximum stigma. Based on two questions on disclosure, an overall score was computed. High disclosure was assigned to those who often or very often disclosed to the family and were never or seldom afraid to disclose elsewhere. We examined the experiences of HIV stigma of 25 adults (52% females) using semi-structured, open-ended interviews and monthly oral diaries over one year. Mean age of the respondents was 70 years (range 60–80 years) and 80% of all respondents were enrolled in ART. Interview transcripts were analysed using thematic content analysis. Overall, 55% of respondents had a high disclosure score, meaning they disclosed easily, and 47% had a high stigma score. The stigma scores were similar among those with high and low disclosure scores. In multivariate analyses with disclosure and stigma scores as dependent variables none of the respondents' characteristics had a significant effect at the 5% level. Qualitative data revealed that stigma ranges from: (1) perceptions (relatively passive, but leading to behaviour such as gossip, especially if not intended maliciously); to (2) discriminatory behaviour (active or enacted stigma; from malicious gossip to outright discrimination). Despite the relatively high levels of disclosure, older people suffer from high levels of stigma of various forms apart from HIV-related stigma. Efforts to assess for different forms of stigma at an individual level deserve greater attention from service providers and researchers, and must be context specific.

Challenges with seeking HIV care services: perspectives of older adults infected with HIV in western Kenya

“…Findings from our study indicate that several years into the HIV epidemic, stigma is still a challenge and more so to older adults, confirming findings from other studies [12,13,45,46]. Compared to younger adults, older adults living with HIV face double stigmathe stigma attached to HIV infections, and the stigma attached to engaging in sex at an older age.…”

“…More than three decades into the HIV epidemic, stigma and discrimination towards persons infected with HIV continue to persist. Older persons living with HIV experience stigma related to HIV [12] and discrimination due to age [13]. In some cases, older persons have been branded too old to be HIV infected [13,14].…”

“…Stigma and discrimination have, therefore, become a barrier to accessing HIV services [15] including testing and care services. Additionally, stigma directed towards persons infected with HIV has made it difficult to cope with their illness [16] and has been associated with poor health outcomes among the older population [12]. Some HIV infected older persons have shied away from disclosing their status for fear of being stigmatized [12,17,18], which in turn prevents them from receiving social support from those close to them.…”

Sexual Behaviors and HIV Status: A Population-Based Study Among Older Adults in Rural South Africa

“…Among HIV-positive older adults, “positive prevention” campaigns with intensified counseling and motivation about sexual transmission risks should be considered, 45,46 with attention to HIV-related stigma that may be experienced by older adults. 47,48 Specific programs ensuring universal HIV testing, rapid linkage of HIV-positive people to care, and supported HIV treatment retention and adherence should also be considered. 17,49 Among HIV-negative older adults, it will be important to consider how established interventions, such as medical male circumcision 50 and condom promotion, and novel interventions, such as preexposure prophylaxis, 18 can be designed and delivered in ways that best meet the needs of older adults.…”

Societal awareness of stigma and discrimination against persons living with Human Immunodeficiency Virus (HIV) (PLHIV): Experience of clinicians, PLHIV, general population, and persons who are vulnerable to HIV

“…The study also found that about two-thirds of all respondents fear the consequences of revealing HIV+sero status (Kuteesa et al, 2014). The findings from this study were similar to several studies in Africa found that AIDS epidemic has often been associated with severe negative public reactions ranging from banning entry of HIV infected individuals to isolating an individual in the family, deserting a pregnant wife on knowing her HIV status in the hospital, or removing a person from his job, or even denying a child admission in school.…”