Stigma and discrimination in Timor Leste - Ines Lopes, Executive director, Estrela+, Timor Leste.
· Timor leste a catholic, spiritual and ‘moral’ based society.
· 631 cases of HIV. 231 on treatment (75 deaths) – considered low prevalence
· ESTRELA+ Aims to allow people living with HIV to live with dignity/respect free from discrimination through community based teaching in response to challenges faced due to conservative nature. HIV taboo, cannot mention sex, ‘moral’ attitude promoting immoral attitude to those living with HIV. This leads to people living with HIV not disclosing status to healthcare/ employer
· ESTELA+ fund misinformation was widespread with media playing a significant a role in perpetuating this. It was found that Stigma could be extreme and revolved around HIV being seen as an ‘immoral’ or ‘bad’ disease. Some stigmatising behaviour included being called ‘dirty’/ shouted at/ violent threats/ forced to move/ rejected by family/ medicine thrown away by family/ prevented to visit healthcare/ baby removed by family.
· People living with HIV had concerns with regards to lack of confidentiality and differential treatment in health care. This meant people living with HIV were more likely to use free foreign clinic as they felt that they had better treatment and confidentiality was respected.
· Change continues to take place through solidarity and support, lobby the government with regards to labour rights. Community groups have worked with the church to promote tolerance and work has been done at a community level to disseminate evidence based information and community training.
Perceived stigma is associated with non adherence to ART; a case study of a community- based sms reminders campaign - Limin Mao
· Trial of 6-week intervention of community driven sms reminder/ congratulatory sms to assist with ART adherence. It comprised three groups: G1- 2 way sms 3/wk, G2 - 2 way sms 2/wk, G3 - 2 way sms 1/wk.
· Valid responses – roughly split between 3 groups.
· Characteristics included 85% Gay men, 25% outside metro area. Many lived alone without a partner pointing towards an otherwise isolated cohort.
· 34 with CD4 >500 - 11 increased, 2 decreased, 18 stayed same (no statistical significance found)
· During intervention (last week) 100% adherence. And adherence increased across all groups throughout the intervention.
· Participants felt no stigma from non-adherence but did report stigma related to: HIV status (31%), sexual orientation (27%), drug use (11%).
· Participants reported majority of support came from HIV clinician and HIV support groups.
· Participants liked a community based reminder/ congratulatory message when adherent as it made them feel supported. They preferred receiving a message from the community as felt clinicians too busy and fear of letting clinician down if non-adherent. It was noted most already had strategy in place to assist adherence
· Sustained ART adherence is required, PLWH want community based support.
· Future studies would need to look at if SMS reminders would be tolerate on a long term basis or more suited to initiation of therapy/ if having difficulty being adherent.
Development of a national monitoring system of stigma among people living with HIV in Australia - Carla Treloar
· The stigma indicators project - was a brief indicator of stigma and measure of stigma over time including the mirror of stigma/ attitudes of healthcare professionals over last 12 months.
· Results 200 ppl (>50/male/ gay /1% ATSI/ 5% CSW/35% PWID)
· Almost all disclosed status to healthcare/family – fewer to employer/colleague.
· Stigma most frequently experienced in media, amongst healthcare workers not paramedics and sexual partners.
· Internalised stigma observed in 25%-50% - proving a significant experience for those surveyed.
· 1/3 – 3/4 reported they had been told by others that they had felt stigma from sexual partners.
· In conclusion the preliminary data from ‘The stigma indicators project’ includes – stigma and discrimination most common sexual partners health worker and media.
· Future work will covariate i.e. mental health and develop qualitative work with CSW and HBV and feed these results back to the national strategy.
ART use, stigma and disclosure changing attitudes among PLHIV 1997-2015 - Jennifer Power.
· FUTURE study
· PLHIV Self reported physical health–good/excellent, general wellbeing good/excellent and this is consistent.
· However, attitudes toward relationships and disclosure showed increase in concern over disclosing status, a consistently high preference for sero-sorting and a reduction in fear of virus transmission reduced,
· FUTURE STUDY also revealed High rates of diagnosed mental illness (>50%), with 30% taking medication in last 6 months this mainly consisted of the 45-59 age group. There was no sig difference between men and women.
· In conclusion, wellbeing study for PLHIV requires more than purely medical treatment and issues of stigma persist despite improved health/ viral suppression.