Determinants and effects or consequences of internal HIV-related stigma among people living with HIV in Morocco

A steering committee (SC), chaired by the national AIDS program and UNAIDS-Morocco, was commissioned to recruit the research team, validate the study design, review the results, provide recommendations and suggest interventions to address HIV-related stigma based on study results. The Research Department of Association de Lutte Contre le Sida (ALCS), the first NGO operating in HIV/AIDS in Morocco and in the MENA region, and founding member of Coalition PLUS, was selected by the SC to conduct the survey. A 3-day workshop took place for the development of a training module on stigma, the adaptation of the Stigma Index protocol to the local context and the management of ethical aspects. Subsequently, 15 interviewers living with HIV and 5 supervisors were selected and trained over 2 days by ALCS’s team to administer the questionnaire. Interviewers and supervisors were recruited via organizations known for their implication and work with PLHIV and selected by a recruitment committee.

Ethical approval was received by the Casablanca Biomedical Research Ethics Committee (IRB00002504) in the he Faculty of Medicine and Pharmacy of Casablanca at the Hassan II university in Casablanca. Informed written consent was obtained from all participants.

Inclusion criteria to participate in the study were: being a PLHIV, being 18 years or older, being followed in a center that provides care for PLHIV (regardless of treatment) and providing consent to participate in the study. A cluster sampling method was used to recruit participants in medical care centers across 8 cities in Morocco. A study sample size of 640 was determined (see supplementary information for details regarding sample size calculation and distribution per study site) and a total of 9 sites were selected to recruit participants (Casablanca, Agadir, Rabat, Marrakech (2 sites), Fez, Tangier, Nador and Beni Mellal). These sites were specifically selected to obtain a nationally representative sample of PLHIV. A randomly drawn cluster of 10 PLHIV, consisting of 5 men and 5 women, was drawn at each participating medical care center among the outpatients scheduled for a visit on that specific day. In the event that one or more of the people selected refused to participate, another draw was conducted to complete the cluster.

The People Living with HIV Stigma Index questionnaire was adapted and translated into French and Moroccan Arabic dialect “darija”, then tested through a dozen interviews with PLHIV in Casablanca.

Internal stigma was evaluated in the questionnaire with the following question: “Over the last 12 months have you felt one of the following feelings due to your serological status”. The seven feelings or beliefs were as follows: I feel ashamed, I feel guilty, I blame myself, I blame others, I have low self-esteem, I feel that I should be punished, and I want to commit suicide. We created an internal stigma score with 1 point added for each of these items.

The internal stigma score was compiled as a score ranging from 0 to 7 to take account increasing levels of internal stigma, wherein a higher score indicated higher levels of internal stigma.

Continuous variables were reported as median with IQR and categorical variables as frequencies. Negative binomial regression models with the estimation of Incidence Rate Ratios (IRR) were used to identify characteristics associated with the internal stigma score. Variables with a p-value lower than 0.25 in the bivariable analysis were considered eligible to enter the multivariable model. A backward procedure based on the Likelihood Ratio Chi-2 test was used to select variables for the final model. The final model selection was based on statistical significance (p < 0.05) and/or pertinence of the variables.

Data analysis was carried out using Stata/SE 14.0 software (StataCorp LP, College Station, USA).

More than half (51.3%) of participants were male and median age was 36 [IQR: 28–43] years (Table 1). One quarter (25.3%) had no formal education, close to half (49.8%) were unemployed, and median household income per month was 2000 MAD [1000–3000] (or 220 US dollars) while the minimum wage was 2600 MAD (or 280 US dollars) at the time of the study. Half (50.2%) of the respondents were single, divorced or separated. One third (33.3%) belonged to at least one key population and median years living with HIV was 4 [2–7]. Very discriminatory or discriminatory reactions of other adult family members when they first knew about HIV status was reported among 16.1% of participants. Experiencing (a few times or often) psychological pressure or manipulation by husband, wife or partner in which HIV-positive status was used was reported by 8.2%. More than a third (36.1%) avoided HIV prevention, testing or treatment services for fear of stigmatization by staff, 28.6% reported being denied health services (including dental care) because of HIV status and 39.2% reported having confronted, challenged or educated someone who was stigmatizing and/or discriminating them. Half of the participants (50.3%) perceived their current health status to be fair or poor.

Among the 7 negative feelings or beliefs of internal stigma, 64% of respondents reported blaming themselves and feeling guilty and 62% of respondents reported feeling ashamed (Fig. 1). More than half reported having low self-esteem and blaming others. Less than a quarter had experiences of feeling that they should be punished and feeling suicidal.

Median [IQR] internal stigma score was 4 [2‐5]. Seventy-one respondents (11.8%) reported no indications of internal stigma. Among the 88.2% that reported indications of internal stigma, 4.8% were concerned by all the 7 items of internal stigma, with a score equal to 7 (Table 2).

More than half (51%) of the respondents avoided going to the local clinic when they needed and 27% avoided going to the hospital (Fig. 2). Forty-four percent chose not to attend social gatherings and 43% decided to isolate themselves from family and/or friends. The decision to not have (more) children was reported by 40% of respondents, the decision to not to get married and not to have sex were reported by 33 and 29%, respectively. Slightly more than a quarter decided to stop working, 22% did not apply for a job/promotion and 17% withdrew from education/training or decided not to apply due to internal stigma.

The temporospatial cluster sampling used in this study allowed us to gather a representative sample of PLHIV in Morocco; the 8 care centers that were chosen to recruit participants are known to be the most solicited by PLHIV in Morocco. The average age and the relationship situation of the study participants are very similar to those seen among the cohort of PLHIV followed in the care centers in Morocco where average age is 38.1 years and 34.0% are single, 41.4% are married and 9.3% are widowed [42]. The study sample confirms the young character of the PLHIV population in Morocco. The median age of participants was 36 years and PLHIV under 40 represent more than 65% of participants. These results are in accordance with the national statistics published in 2015 [42] in which the reported proportion of young adults (between 25 and 44 years) infected with HIV was 65%. More than half of the study participants were not in a relationship at the time of the interview (either single, divorced or separated or widowed) and the rate of widowed women was significantly higher than for men (18% vs 2%), as found in another study [43]. The level of education, employment status and economic level reflect the precarious and vulnerable situation of PLHIV and key populations in general [44].

Our results show that HIV-related internal stigma is predominant (88.2%) among PLHIV; blaming oneself, feeling guilty, and feeling ashamed were the most frequently reported indications. Blaming oneself has also been reported in other studies within the region: 70% in Egypt [36], 49% in Algeria [37] and 46% in Yemen [35]. This is also observed in other regions of Africa: 49.2% in South Africa [38] and 40% in Cameroon [39]. However, the proportion of PLHIV reporting low self-esteem in Morocco (55%) and in Egypt (60%) is much higher compared to Algerian PLHIV (17%).

More than half of the participants (51.9%) reported 4 or more indications of internal stigma. We note that there is variability in the level of experienced internal stigma, including those who report no indications [26, 45]. Additionally, internal stigma impacted certain decisions that touched various spheres of life including personal and social relationships (not getting married, not having sex, not going to social gatherings, social isolation), career (not applying for employment/training, withdrawing or not applying for employment/training) and health (avoiding to seek care when needed). Several studies have shown an association between internal stigma and poor affective health and well-being as well as poor health care behaviors [25, 27, 46].

Certain sociodemographic factors, such as not having formal education, were associated with a higher level of internal stigma score, as reported elsewhere [47]. The fact that part-time employment, compared to full-time employment, was associated with a lower level of internal stigma score may reflect a potential protective effect of limiting exposure to HIV-related stigma that has been documented in the workplace [48]. The negative impact of stigma on education and professional evolution which concerned 16–26% of the participants further supports these results. No association was detected between age or gender, in contrast to other studies [38, 46, 49, 50]. We note, however, that women were significantly more likely to declare six or more negative feelings or beliefs of internal stigma compared to men (p = 0.013). As current relationship status was statistically significant in the bivariable analysis, we chose to adjust for this variable in the final model given research that has shown a positive association between stigma and living with spouse [51], the potential social consequences of HIV-related stigma on the family [52] and the importance of familial support [53].

Belonging to at least one key population was also significantly associated with an increase of the internal stigma score, possibly due to experiences of intersectional stigma related to serological status and to judgement by others for “immoral and unacceptable acts” [20, 54]. Indeed, commercial sex work and same-sex relationships are condemned by the society and the law and can contribute to self-blame among key populations [55].

In the past decade there has been an increasing focus on understanding “intersectional stigma” which encompasses the phenomenon that an individual or a group can experience stigma related to various social categories (or more appropriately social inequalities), and in a cumulative manner [21, 56]. It is thus necessary for interventions to have a holistic approach, taking into account intersectional stigma, to have maximal effect on reducing social and health inequalities experienced by PLHIV [21, 57, 58].

Respondents who reported very discriminatory or discriminatory reactions from other adult family members upon learning of serostatus had higher internal stigma scores. Greater internalized stigma has also been associated with lower HIV status disclosure to family members [59]. Furthermore, there is evidence that serostatus disclosure may be particularly difficult among individuals who consider religion an important aspect of their lives due to fear of stigma and discrimination [60]. Lack of disclosure among family members (and others), however, will also have an impact on potential support and lead to social isolation [25, 61]. Experience of psychological pressure or manipulation by spouse or partner in which HIV status was used was not significant (p = 0.053) but was kept in the final model, much for the same reasons as relationship status, as it reflects the complex role of family in HIV-related stigma experienced by PLHIV.

More than a quarter (28.6%) of the study participants reported being denied health services and this was significantly associated with the internal stigma score. Although this concerned a non-negligible proportion of PLHIV in Morocco, this is low compared to 53% reported in Algeria and in Egypt [36, 37]. Perceived or enacted stigma has been identified as a major barrier to accessing healthcare services and treatment [24, 30, 50, 62, 63]. Our results show that 52% of participants decided not to visit a local clinic even when it was necessary. This result is higher than proportions reported by other countries such as Cameroon (8%) or Democratic Republic of the Congo (18%), but it is similar to other countries in the region, such as Algeria (48%) and Yemen (33%) [35, 37]. Avoiding HIV prevention / testing / treatment services for fear of stigmatization by staff was associated with a higher internal stigma score, which supports findings from other studies. HIV-related stigma can work through various mechanisms to impact engagement in HIV-related care such as ART adherence and care retention [29]. Avoiding healthcare services has an obvious impact on the ability to test and treat PLHIV and on a broader scale likely contributes to challenges in implementing effective HIV strategies in the region [64]. Finally, and more generally, poor health seeking behavior also has a negative impact on overall health and well-being. Previous research found that severe HIV symptoms made PLHIV felt negative about themselves [19, 65]. Indeed, our findings confirm that a fair or poor perceived health status is significantly associated with an increase of the internal stigma score.

Given the limited data available regarding PLHIV in the MENA region, this study contributes valuable information on internal stigma among a representative sample of PLHIV. In conjunction with other countries in the region that also conducted the Stigma Index, these results further support the prevalence of internal stigma. Use of the Stigma Index to measure internal stigma is also a strength of this study as it is a validated instrument that has been used internationally. Implication of PLHIV in the study, as trained interviewers, is also a strength as they are provided an opportunity to be an active part of the study and their role may also put participants at ease for completion of the questionnaire. One limitation concerns the lack of dedicated questions on stigma related to key population membership, and thus intersectional stigma could not specifically be analyzed; such questions have been added to a newer version of the Stigma Index tool [34]. Additionally, as this is a cross-sectional study, we are unable to evaluate stigma and discrimination over time. As HIV is now a chronic condition, it is increasingly important to collect longitudinal data regarding stigma [22]. Finally, due to low participation, we were unable to analyze information regarding trans participants. More visibility to this population, which is disproportionately affected by HIV globally [66] and who also suffer from criminalization for their sexual orientation and gender identity in the region, is urgently needed.