A survey of the annual stigma index study on the trends of discrimination against young people living with HIV (YPLWIH) has revealed rampant increase in HIV stigma, especially internal stigma.

Out of the eight components that measure internal stigma, feeling ashamed was mentioned by a relatively high proportion (59%) of 131 young people who had internal stigma. This is attributed to relatively young age where most respondents belonged.

Other components fueling internal stigma are self-blame (40, 18.4%), suicidal feelings (15, 6.8%), guilt (25, 11.2%), and low self-esteem (49, 22%).  However, almost all components that measure external stigma reduced. For instance, HIV related stigma from social gathering/ activities reported by 22 (10.4%), from family activities was 18 (2.7%), from places of worship was 17(8%).

Discriminatory practices such as being gossiped about was reported by 49%, verbal insult was 29%, physical threats were reported by 14% physical assault was at 20%. Generally, discriminatory practices are high among YPLHIV unlike exclusion from religious places which was low.

The survey, therefore, revealed that factors related to external and internal stigma could be posing critical barriers for the young people to access sexual and reproductive health SRH/HIV services.

POMU ED giving his views on stigma

UNAIDS defines HIV-related stigma and discrimination as a “process of devaluation’ of people either living with HIV and AIDS –discrimination follows stigma and is the unfair and unjust treatment of an individual based on his or her real or perceived HIV status.”

Stigma can be internal or external. Internal stigma or self-stigmatization has to do with the person living with HIV himself, feeling shame, living in denial and stops him seeking help or care, while external stigma/discrimination involves unfair treatment from the public, and the attitudes they develop towards people living with HIV.

This is the first ever stigma survey of YPLWIH conducted in three districts of East Central Uganda (Jinja, Iganga and Bugiri) between November and December last year, among YPLWHIV, between 14 to 24 years.

It was conducted by Uganda Network of Young People Living with HIV & AIDS (UNYPA), the National Forum of People Living with HIV Networks in Uganda (NAFOPHANU) supported by district health officers, with financial support from Aidsfonds through Get Up Speak Out (GUSO).

223 respondents were randomly sampled 84 (37%) males and 139 (53%) females in the three districts, almost half 109 (49%) of the respondents in the age category of 20-24 years and the other half was 15-19 years. Although majorities were single 111(50%), proportions depicted a difference by gender, 56(51%) males vs 55(49%) females.

While sharing the findings of the stigma index study last Friday at Grand Global Hotel, Kikoni, Winnie Ikailai, project coordinator, NAFOPHANU, said that the main baseline survey objective was to provide data to guide interventions aimed at stigma reduction among young people living with HIV (YPLHIV), development of future advocacy interventions to promote the rights of YPLWHI and facilitate measurement of changes.

“It was also aimed at finding out the experiences of YPLHIV regarding stigma and discrimination, and to assess the extent to which the vice is a critical structural barrier to access and utilization of Sexual and Reproductive Health and Rights (SRHR) and HIV services by YPLHIV, in order to provide evidence for programmatic interventions to effect changes,” Ikailai added.

The survey revealed unique challenges with regard to SRHR owing to transition issues PLHIV specific, by for and with examined forms, trends and experiences of PLHIV selected from YPLHIV networks’ registers, and ART clinics based on lived experiences of last one year.

ART Access

The survey revealed that in the three districts, 216 (97%) were on antiretroviral (ART), 83 (39%), said their health was good, and 53 (25%) noted their health being fantastic. From the qualitative data, the young ones (12- 15 years) revealed some awareness of why they take medicines.

Asked “why do you take medicine every day?” – the responses-verbatim: To have life, to reduce the intensity of the virus, to stop the virus from multiplying, to suppress the viral load (amount of virus) since ARVs give you strength and life.

 At the time of the survey, almost all respondents 216 (97%) were accessing ART despite high levels of unemployment (largely attributed to age bracket in the survey) and low access to enough food (most were dependents).

Joanita Kawalya speaking during the launch of the stigma index study

The majority females 24 (18%) completed primary school education more than males 3 (3.8%). Overall, the respondents were sexually active. In terms of program implication, the respondents demonstrated the need for sexual and reproductive health services (SRHS) as per the GUSO planned interventions.

Barriers that interfere with young people’s access to SRH&HIV services

Quotes: Pill burden “Scared of pills because they are big and many self-stigma “ashamed of many things” Peer pressure “wrong advice from friends about not going to clinics” Low self-esteem “general fear to go to clinics” False information in society “we shall die quickly because the medicine are very expensive, unmanageable” Still young (parent consent): “we often need permission from parents”

Rights, laws and policies

36 males (45.6%) and 38 (29%) females had heard of the Declaration of Commitment on HIV and AIDS which protects the rights of people living with HIV. However, a small proportion 15 (19%) males and 28(21%) females had ever read or discussed the content of this declaration.

27 (34%) males and 28 (21%) females had heard of the national HIV and AIDS Policy which protect(s) the rights of PLHIV, yet only 4 (5.1%) males and 17 (13%) females had ever read or discussed the content of this Policy.

Effecting change

26 (33%) males vs. 17 (13%) had confronted, challenged or educated someone who was stigmatizing and/or discriminating against. 16 (20%) males’ vs 54 (54%) female knew of organizations or groups to go for support regarding experiencing stigma or discrimination.

The concern is whereas more females knew of the organization to support in cases of need to redress stigma and discrimination, more males were assertive compared to the females. Could be linked to deep-routed gender variations between females and males that generate several levels of self-esteem.

Winnie Ikailai, project coordinator, NAFOPHANU, sharing the stigma index study with the audience.

HIV testing experiences, decision making and counselling experiences

Decision making before undertaking HIV: Yes, I took the decision myself to be tested (i.e., it was voluntary) 144 (67.92). I took the decision to be tested, but it was under pressure from others 18 (8.49). I was made to take an HIV test (coercion) 8 (3.77). I was tested without my knowledge – I only found out after the test had been done 42 (19.81).

Counseling services during HIV testing:

1 received both pre- and post-HIV test counseling 176 (83.02), I only received pre-test HIV counseling 6 (2.83), 1 only received post-test HIV counseling 17 (8.02), I did not receive any counseling when I had an HIV test 13 (6.13).

Disclosure and confidentiality.

Adult family members; 102 (48%), health care workers; 90 (42%). Other YPLWHI 80 (37.7%) Husband/wife/partner 68 (33%), children in family 44(20.8%) social workers 35(16.5), teachers 28 (13.2) and others in ascending order 44 (20.8%), revealed that other peopled living with HIV revealed their status without permission 29 (13%), and 26 (12%), said their partners and family respectively said other adult household members are not aware of their HIV status.

Stigma and SRHR-reproductive health rights and experiences

HIV stigma poses a critical barrier to access sexual and reproductive health services; whereas most young people 147 (69%) self-reported to be sexually active and 63(30%) already have biological children, the proportion who reported to have received counseling about reproductive options is generally low at 34 (43%) males vs 77 (58%) females.

79 (37.1%) revealed to have accessed elimination of mother-to-child transmission (EMTCT) of HIV services and interventions, while still 29 (13.7%) were not aware of whether such services existed. 22(10.4%) did not have access to SRHR services and same proportion reported to have not had HIV when they were pregnant. This implies that there is need for comprehensive sensitization programs to create demand for services but also to promote desirable behaviors among the target audiences.

Recommendations

The survey recommended dissemination at district and national levels, development of an advocacy plan, investing in stigma reduction initiatives and in-depth integration of HIV with SRHR. Economic empowerment through community saving schemes, use of change agents, use of YPLHIV champions/ambassadors, peer to peer support and community dialogues.

Other recommendations: More awareness campaigns with accurate and age-appropriate knowledge, integration of HIV with SRHR services, one stop center work with existing YPLHIV networks to support them, AIDS competence trainings for health workers, supportive disclosure should be the norm, economic empowerment for YPLHIV, NAFOPHANU, UNYPA and other implementing partners to encourage YPLHIV to access services, central and local governments to embark on programmes targeting stigma reduction.

Conclusion

According to the survey, though almost all (97%) are accessing ART, those who are accessing SRHR services are quite low. Therefore, to sustain the momentum on ART as the young people continue to develop, it is important that GUSO project, underscores the importance of integration of SRH information in all services for the YPLHIV. Advocacy to ensure provision of reproductive health services for YPLHIV is key.

Effects of stigma

The fear of stigma and discrimination affects the uptake of HIV services. Gossip, for example, leads to other forms of stigma like blame and finger pointing and questioning of individual behavior. This also means that disclosure will be done selectively or not done at all.

People will not be free to seek and uptake treatment. Social exclusion increases and misconceptions could continue due to gossip. Violence is a severe consequence of stigma faced principally by women and girls at the hands of their partners for requesting condom use.

Stigma and discrimination are “road blocks” to universal access to HIV prevention, treatment, care and support. The stigma associated with HIV and the resulting discrimination can be as devastating as the illness itself: abandonment by spouse and/ or family, social ostracism, job and property loss, school expulsion, denial of medical services, lack of care and support, and violence.

These consequences, or fear of them, mean that people are less likely to come in for HIV testing, disclose their HIV status to others, adopt HIV preventive behavior, or access treatment, care and support. If they do, they could lose everything.

What others say:

Dr. Dan Byamukama, the head of HIV prevention at Uganda AIDS Commission (UAC)

The youth living with HIV are the most stigmatized than any other group in the country. Being a youth living with HIV becomes a double challenge. The struggle against HIV and AIDS will never succeed without addressing stigma, the single most important barrier to public action. It is the main reason too many people fear seeing a doctor to determine whether they have the virus, or to seek treatment if so.

Ruth Awori, ED, UNYPA.

Stigma is fueled by the lack of understanding of the disease, myths about how HIV is transmitted, prejudice, lack of treatment, irresponsible media reporting and insensitive utterances. Four decades since the onset of the disease, there has been a wave of awareness about AIDS but people still don’t get it.

Ruth Awori, ED UNYPA explaining the effects of stigma

This is the first-ever stigma index report for East Central Uganda (Jinja, Iganga and Bugiri) region, believed to be among the regions with the highest burden of HIV in the country. The stigma report is a landmark move in the fight against HIV and AIDS for the young people living with HIV. We thank the partners that participated in the survey because we now have measurable evidence to refer to regarding stigma and discrimination for this particular region.

Richard Sserunkuma, ED Positive Men’s Union (POMU)

Since the Human Immunodeficiency Virus-HIV pandemic began, stigma has been proven to be a major barrier to successful HIV prevention, care, and treatment, which often reinforces existing social inequalities based on gender, ethnicity, sexuality and culture globally.

It is tragic that 40 years later, stigma and discrimination would continue to be major problems, even in an era where treatment for HIV is more and more accessible, and prevention of HIV is not only more and more possible, it is critical.

People are scared of going to get services, meaning we are likely to have more AIDS related deaths. If talk of getting to zero, we should focus more on how we should get away with the prevalent stigma so that the new infections do not happen and we do not have anybody dying of AIDS related death.