Study Type and Scope

It was a national, descriptive, cross-sectional study that took place in all 44 districts of Togo’s six health regions. In the health districts, the survey was conducted at PLHIV sites and community-based structures for the management of key populations. The selection of survey sites was based on the UNAIDS “location and population” approach. It is, therefore, taken into account: the urban or rural location of the site; the weight of the active queue of PLHIV including those from key populations in each health region in the national active queue (burden of the epidemic); the existence of community-based organizations for PLHIV and key populations; and the existence of historical stigma data for comparison purposes.

Study Population

The study population consisted of PLHIV aged 18 years and over who had known their HIV status for more than 12 months; followed or not in structures of intake. The selection was made using the selected sampling procedure for the PLHIV subtype (general population, key population). Six subtypes were targeted: PLHIV of the general population, MSM, drug users (UD), sex worker (PS), transgender, former inmates. The identification of the different subtypes was done in collaboration with the platform of civil society organizations, key population organizations’ network, the National Program of Fight against AIDS (PNLS), and RAS+ member organizations.

Sampling

Hybrid sampling was used, combining limited chain referencing (LCR), sampling based on venue/activity mapping, random/systematic choice, and reasoned choice/convenience.

Based on data from the 2013 stigma index survey, about one in sixteen (1/16) PLHIV may decide to avoid seeking healthcare due to anticipated stigma based on HIV status, hence a probability (p) for PLHIV to avoid seeking healthcare of 6.3%. The Schwartz formula was used to estimate sample size:

The minimum sample size is, therefore, 1008 PLHIV. Assuming 10% of non-responses (i.e., 102 additional PLHIV), an adjusted sample size of 1110 was considered.

Given the need for the study population to be representative, and in view of the context, it was suggested that the final sample be made up of: 30% (i.e., 333) of PLHIV from key populations; 60% of PLHIV (i.e., 666) from the general population; and 10% (i.e., 111) of PLHIV who, because of severe stigmatization and discrimination, delay their engagement in care and become lost-to-sight (LTS) for some.

Data Collection

The questionnaire used is the one developed by the international partnership for the PLHIV Stigma Index (Stigma Index 2.0). It consists of seventy-eight questions divided into eight sections. Two phases preceded the survey itself:

Data Analysis

Analysis was performed using SPSS v23.0 software. Data was disaggregated according to general respondent characteristics and other variables of interest according to context. A comparative analysis of proportions was conducted using the chi-2 test for independent samples. The test validation threshold was set at 95%.

Consent and Ethical Aspects

The protocol of the study was approved by the bioethics committee for health research of the Togo Ministry of Health (opinion N° 015/CBRS of 25 September 2020). All data was collected and processed anonymously. An information note and informed consent form were signed by each respondent.

Status Disclosure

Overall, 81.3% of the respondents reported that it was difficult for them to share their HIV status with a third person and 86.8% reported hiding their HIV status from others. 400 respondents (35.7%) said their partners were aware of their HIV status; and in 27% of cases, this disclosure was made without their consent (Table 1). Also, 24.3% said their children were aware of their HIV status. For 51.4% of respondents, disclosing their HIV status to relatives was not a positive experience and 46.1% said that their loved ones showed no support in learning about their HIV status.

Experiences of Stigma and Discrimination due to HIV Status

One hundred and thirty-seven (12.2%) of whom 4.8% in the past 12 months preceding the survey reported that they had already been excluded from social activities or meetings because of their HIV status (Table 2). In addition, 376 (33.6%) of those surveyed had already been aware of discriminatory comments or gossip about them from family members, 14.7% of whom had been in the past 12 months (Table 2). 378 (33.8%) had at least once become aware of discriminatory remarks or gossip about them from others (beyond their families). Verbal harassment was reported by 294 (26.3%), among whom 12.0% in the last 12 months.

Table 2: Experiences of stigma or discrimination of PLHIV.

Respondents who had experienced stigmatization or discrimination in the last 12 months were significantly higher among those identifying themselves as women (both in terms of exclusion from social gatherings (53.7%; p = 0.00); exclusion from religious activities (45.5%; p = 0.00) and discrimination/gossip from others outside the family (70.7%; p = 0.000). However, respondents identifying themselves as men were more likely to be discriminated against by spouses/sexual partners/children (34.2%) or excluded from family activities (32.4%). The 30–39 age group was more excluded from social activities/meetings (50%, p = 0.02) or religious activities/places of worship (60.6%; p = 0.003) in the last 12 months. One hundred and thirteen (10.1%) respondents reported ever having been refused or lost a job because of their HIV status, including 5.5% in the last 12 months.

Internalized Stigma and Resilience of Respondents

Self-confidence was negatively influenced in 381 (34.0%) of the respondents and 387 (34.6%) of the respondents had a negative influence on their ability to find love (Table 3). Female respondents felt much more self-stigmatized over the past 12 months for both “my respect for myself” (66.4%, p = 0.000) and “my desire to have children” (61.8%; p = 0.01) (Table 4). Depending on age, respondents aged 30 to 39 and those aged 40 to 49 were more negatively influenced on “respect for myself (25.5% and 25.9%, respectively; p = 0.000); my ability to find love (26.1% and 25.3%, respectively; p = 0.000).

	Table 3: Distribution of respondents who experienced feelings of self-stigma because of HIV status in the past 12 months.
	Table 4: Double stigma among people living with HIV.

Over the past 12 months, the self-stigmatizing behaviors of respondents were: deciding not to have sex (405 respondents or 36.2%); isolating themselves from family and/or friends (311 or 27.8%); not participating in social gatherings (321; or 28.7%); avoiding going to a health center or hospital when one needed it (204 or 18.2%); not applying for a job (135 or 12.1%), or choosing not to use social support (211 or 18.9%).

Six hundred and forty-two (57.4%) respondents felt ashamed; 608 (54.3%) felt guilty; 474 (42.4%) sometimes felt useless. As a function of age, apart from the behavior “decided not to have sex,” which was significantly higher for those aged 40–49 (28.9%).

Experiences of Stigma and Discrimination on Grounds other than HIV Status

In terms of gender identity, 64.9% of the 94 transgender respondents had reported being verbally harassed by someone, and 62.8% had felt excluded from family activities. Also, 62 (54.4%) of the 114 gay/homosexual/MSM respondents said they had felt excluded from family activities, including 41 (36.0%) in the last 12 months, and 76 (66.7%) said they had felt that family members had made discriminatory or slanderous remarks about them, including 26 (22.8%) in the last 12 months (Table 4). Twenty-one (56.7%) of the 37 bisexual respondents, including 14 (37.8%) in the last 12 months, had already avoided using health services for fear of someone learning their identity. Forty-three (59.8%) of the 72 DU had already been verbally harassed by a third party, including 31 (43.1%) in the last 12 months.