Introduction
Despite the advent of modern technologies, India is still grappling with the HIV/AIDS pandemic. Stigma is one of the key aspects which can interfere with HIV test-seeking behaviour, care-seeking behaviour upon diagnosis, quality of care given to HIV-positive patients and perception and treatment of People Living with HIV/AIDS (PLHA) by communities, families, and partners.
Aim
To determine the perceived stigma associated with HIV/AIDS and its correlates among PLHAs attending the Anti Retroviral Therapy (ART) centre of North Bengal Medical College, Darjeeling, West Bengal, India.
Materials and Methods
An observational cross-divtional study was conducted over a period of four months among 454 patients aged ≥18years attending ART centre of North Bengal Medical College. Perceived stigma among the study subjects were assessed using a face and content validated version of Berger’s HIV stigma scale. Linear regression analysis was used for statistical analysis of the predictors of perceived stigma. Data were analysed using SPSS version 16 software.
Results
The majority of the study population had moderate to low stigma. Regression analysis showed that being on treatment with ART had the highest contribution towards stigma followed by gender and HIV serostatus of the patients.
Conclusion
The patients attending ART centre of North Bengal Medical College had moderate to low level of stigma. In absence of any efficacious stigma reduction programs in this region, more work needs to be done to assist PLHA in coping with stigma.
Introduction
HIV is a global pandemic with wide influence on the life of the sufferer, physically, socially and culturally. According to the World Health Organization (WHO), there were an estimated 36.9lacs (34.0 lacs–39.8lacs) People Living with HIV/AIDS (PLHA) worldwide at the end of 2015, although the burden of the epidemic varies considerably between countries and regions [1]. With an estimated 21.17 lacs (17.11 lacs–26.49 lacs) people living with HIV/AIDS in 2015, India is still grappling with the HIV/AIDS pandemic [2].
One key aspect of the HIV epidemic that is significantly affected by culture and knowledge of HIV transmission is stigma, specifically HIV/AIDS related stigma. Stigma is associated with HIV/AIDS for its link with behaviours that are themselves stigmatized, such as having multiple sexual partners, using intravenous drugs, and engaging in sex with same-sex partners [3]. In addition, HIV/AIDS is perceived as contagious disease and it is also associated with the possibility of suffering a painful death [4].
According to the United Nation Programme on HIV/AIDS, HIV-related stigma and discrimination is a process of devaluation of people either living with or associated with HIV and AIDS. Discrimination is a facet of stigma, where, there is segregation, or limitation of expression, marginalization, or prevention from access to something or services resulting in unfair and unjust treatment of an individual based on his or her real or perceived HIV status [5,6].
Stigma against PLHAs is widespread and almost universal. A UNAIDS report suggests that in roughly 35% of countries with available data, more than 50% of women and men report discriminatory attitudes towards PLHAs [7]. A systematic review of studies of HIV/AIDS-related stigma and discrimination in India by Bharat S revealed that the results are fairly consistent in respect to attitudes towards PLHA. In these studies, most of the respondents blame HIV-infected people for their infection, are afraid of infection from casual contact, try to avoid them in daily life and support their seclusion in health settings [8].
HIV/AIDS-related stigma may manifest itself by negatively affecting preventive behaviours such as condom use, HIV test-seeking behaviour, care-seeking behaviour upon diagnosis, quality of care given to HIV-positive patients and perception and treatment of PLHA by communities, families and partners [9,10]. It also has serious ramifications, like poor treatment adherence and hence increased risk of HIV disease transmission and progression. Not withstanding the pervasiveness of HIV-related stigma and discrimination, they remain seriously ignored and are relegated to the bottom of AIDS program priorities [11,12].
Though widespread development has been made in the battle against the AIDS epidemic, discrimination and stigma still lurk at the fringes. At a time, when the whole world is embracing the concept of Universal Health Coverage (UHC) which means that all people receive the quality health services they need, stigma and discrimination has got renewed importance. As part of the Sustainable Development Goals, the world has committed to “ending the AIDS epidemic” with a subtarget related to elimination of HIV-related discrimination by 2020 where 90% of people living with, at risk of and infected by HIV report no discrimination, especially in health, education and workplace settings [7,13].
Whilst there is literature regarding the other aspects of HIV/AIDS, there is an information gap on the issue of HIV related stigma and discrimination in this part of the country. In India, research shows that stigma against PLHA have been promulgated by ignorance about HIV/AIDS, traditional beliefs, and a moralistic sexual label [14]. Keeping this in context, the present study was undertaken with the aim to determine the perceived stigma associated with HIV/AIDS and its correlates among PLHA attending the Anti Retroviral Therapy (ART) centre of North Bengal Medical College, Darjeeling, West Bengal, India.
Materials and Methods
An observational cross-sectional study was conducted over a period of four months (September to December 2015) among patients attending ART centre of North Bengal Medical College. Patients ≥ 18years attending ART centre of North Bengal Medical College during the study period constituted the study population. Patients who were not able to read and write Bengali or Hindi were excluded from the study.
On account of scarcity of published literature in this part of the country, anticipated prevalence of stigma among PLHA was taken as 50%. Considering 95% level confidence, 10% relative precision, 20% non-response, the sample size was calculated to be 480, which were rounded off to 500. Simple random sampling technique was applied to select the study subjects from their list (prepared beforehand) using computer generated random number table.
The data was collected from the study population by using a pre-designed, pre-tested, semi-structured questionnaire in both Bengali and Hindi, consisting of a first part dwelling on age, marital status, residence, occupation, educational qualification of the patient and a second part comprising of Berger’s HIV stigma scale [15]. In both the languages, by initial translation, back-translation, and re-translation, the questionnaire was customized for the study. Pre-testing of the questionnaire was carried out on a convenience sample of 30 patients. The clarity and relevance of items were assessed and certain modifications were made on the basis of the findings of the pre-test.
Perceived stigma among the study subjects were assessed using Berger’s HIV stigma scale, consisting of 40 items which requires participants to respond on a four item Likert scale (strongly disagree=1, disagree=2, agree =3 and strongly agree=4) to statements about their feelings and opinions regarding how people treated them because of their HIV status. Stigma experienced is measured across four domains of stigma - personalized stigma (18 items), disclosure concerns (10 items), negative self-image (13 items) and public attitude (20 items). There is an overlap of few items across the domains. The scale assesses perceived stigma cross-sectionally without a recall period. All items are coded so that a higher score indicates more stigma and vice versa. Total stigma scores are categorized into four stigma levels: minimal (40-70), low (71-100), moderate (101-130) and high (131-160) [10]. The average time required to administer the scale was 15–25 minutes.
Completed questionnaires were collated and entered in MS Excel datasheet after proper data cleaning activities (validation, range and consistency checks). Data were analysed using SPSS version 16 software. Linear regression analysis was used for statistical analysis. In this analysis, overall perceived stigma was used as the dependent variables; the predictor variables included current CD4 count, age and gender of the patient, HIV serostatus of the patient and treatment with ART.
Ethical considerations: Ethical approval was obtained from the Institutional Ethics Committee of North Bengal Medical College, Darjeeling, West Bengal and National AIDS Control Organization prior to the study. Written informed consent was taken from the respondent before administration of the questionnaire after ensuring anonymity and confidentiality.
Results
Among the 500 people approached for the study, questionnaires were filled up by 478. Among the filled up questionnaires, 24 were found to be incomplete. Ultimately, 454 questionnaires were analysed. The mean age of the participants was 33.45±5.21 years and males comprised of 59.3% of the study population. As for religion, it was seen that majority (79.1%) of the study population were Hindu whereas 10% and 11.9% were Muslims and Christians respectively. While calculating socio-economic status, it was seen that majority of the study subjects (78.9%) belonged to families with per capita income of Rs. 2000 or above. As far as education was concerned, majority of them (46.9%) were educated upto Standard VIII. Out of the total study population 56.4% were asymptomatic and the rest were symptomatic. Among the study population, 278(61.2%) were on ART and the mean CD4 count of the patients was 678.92±106.7 per cu.mm.
Analysis of perceived stigma among the sample revealed an average score of 100.53 (SD, 14.45). Among the four subscales of stigma, the concern with public attitudes about people with HIV was the highest, followed by personalized stigma, negative self-image and disclosure concerns [Table/Fig-1] Males {113.42 (SD 22.4)} were found to have higher levels of overall stigma than their female counterparts {92.67 (SD 18.7)}.
Domains of stigma among the study population.
| Domains | Mean | SD |
|---|
| Personalized Stigma | 44.79 | 8.57 |
| Disclosure Concerns | 23.00 | 3.32 |
| Negative Self-Image | 32.30 | 4.63 |
| Concern with Public Attitudes about People with HIV | 49.49 | 9.23 |
| Overall stigma | 100.53 | 14.45 |
N=454.
[Table/Fig-2] shows that when the stigma scores were coded, the majority of the study population had low stigma (50.7%), followed by 42.7% who had moderate stigma. Only 10 subjects had a high level of stigma and 20 had minimal stigma.
Levels of stigma among the study population.
| Levels of stigma | Frequency | Percent |
|---|
| Minimal | 20 | 4.4 |
| Low | 230 | 50.7 |
| Moderate | 194 | 42.7 |
| High | 10 | 2.2 |
| Total | 454 | 100.0 |
N=454.
Factors associated with perceived stigma: Multiple Linear regression analysis between perceived HIV stigma and demo-graphic and disease variables showed that being on treatment with ART had the highest contribution towards stigma followed by gender and HIV serostatus of the patients. Age of the patient and CD4 count had negligible contribution toward perceived stigma.
The regression model for this purpose can be best expressed by the equation:
Perceived stigma = 113.79 – 0.14 (Age of the patient) – 3.17 (Gender of the patient) + 2.89 (HIV serostatus of the patient) – 7.85 (On treatment with ART) – 0.001 (Current CD4 count in cu.mm).
Thus, applying the above model, approximately 25.8% of the total variation in perceived stigma can be best explained [Table/Fig-3].
Correlates of stigma by regression analysis.
| Descriptive statistics | Unstandardized Coefficients | Std. Error | Sig. |
|---|
| Adjusted R Square = 0.258 | (Constant) | | 113.787 | 5.235 | 0.000 |
| Age of the patient (Mean ± SD) | 33.45 ± 5.21 | -0.138 | 0.067 | 0.041 |
| Sex of the patient | -3.174 | 1.545 | 0.040 | |
| Males | 269 (59.3) | | | |
| Females | 185 (40.7) | | | |
| HIV serostatus of the patient | 2.888 | 1.580 | 0.038 | |
| Asymptomatic | 256 (56.4) | | | |
| Symptomatic | 98 (43.6) | | | |
| On treatment with ART | -7.851 | 3.264 | 0.017 | |
| Yes | 278 (61.2) | | | |
| No | 176 (38.8) | | | |
| Current CD4 count (Mean ± SD) per cu.mm | 678.92 ± 106.7 | -0.001 | 0.003 | 0.789 |
a. Dependent Variable: Perceived stigma
b. Predictors: (Constant), Current CD4 count, Sex of the patient, Age of the patient, HIV serostatus of the patient, on treatment with ART.
Discussion
Though recent advances in medical technologies have made HIV a chronic and manageable condition, PLHA continue to suffer from stigma [16]. The level of stigma was found to be low to moderate in the study setting. This was quite similar to the findings of Li et al., in Henan province of China and Lingaraj et al., in Coimbatore, India [17,18]. This may be explained by the fact that with the wide scale ART roll out and better management of HIV in India, the fear of developing AIDS has now decreased in common people and resulted in a decrease in stigma [19].
However, the actual stigma experienced might be quite different than the perceived stigma. A study by Thomas et al., in Chennai substantiated the findings where the perceived stigma was 97% whereas, only 26% of the PLHAs had actually experienced stigma [20]. Similarly, in a study by Subramanian et al., 96% reported perceived stigma whereas actual stigma was mentioned by only 33% [21].
The expression of stigma in PLHAs not only depends on the cultural/national setting, but also on the interplay between personal and societal levels of stigma. Understanding the societal levels of stigma, plays an important role in implementing effective HIV surveillance programs [22]. National Aids Control Organization advocates anonymous reporting of HIV results to lessen the risk of stigma and discrimination faced by HIV-infected persons [23]. Likewise in the present study, concern with public attitudes about people with HIV was the major contributing factor towards stigma. However, in another study done among HIV positive women in Coimbatore showed the highest score for disclosure stigma followed by public attitude concern [17]. This difference may be due to the different cultural contexts in both the studies.
Socio-demographic factors can predict stigma among the PLHA [24]. Regression analysis revealed that stigma was found to be significantly related with younger age, male patients and HIV seropositivity. Age is an important predictor when it comes to appreciating stigma among adults living with HIV/AIDS. Emlet et al., suggested that the relationship between age and stigma is intricate [25]. In another study, Emlet et al., showed that older age was associated with lower levels with stigma [26].
Evidence shows that in male dominated societies like ours, women are more likely to suffer from stigma than their male counterparts [27–29]. However, this was quite the opposite scenario in the present study. This may be due to the fact that in Darjeeling district as in other North Eastern states, males and females share a similar footing.
Treatment with ART was shown to increase the stigma among the PLHA. This was found to be quite discouraging because stigma can compromise participants’ abilities to successfully adhere to ART [30].
A significant strength of the study is that, it is first of its kind to be held in this district, which has been categorized as Category B according to NACO.
Limitation
Include recruitment of participants who were already receiving care from an ART clinic. This could have biased the data, as those with few experiences with stigma were less interested in participating in the study, thereby resulting in the over-reporting of stigma experiences.
Anti-stigma programmes, simultaneously addressing individual, organizational and public policy factors are crucial to the success of HIV control programs both at national and global level. This may include approaches at modifying the elements that impact the stigmatization process [31]. Additionally, it can include measures to ensure that complaint redressal systems and legal aid available for PLHAs to seek justice in cases of discrimination [32].
Conclusion
Despite the improvement in awareness regarding HIV among the general population, HIV stigma continues to impact PLHA in this part of the country. As no efficacious stigma reduction programs have been scaled up effectively in this region, more work needs to be done to assist PLHA in coping with stigma.
N=454.N=454.a. Dependent Variable: Perceived stigmab. Predictors: (Constant), Current CD4 count, Sex of the patient, Age of the patient, HIV serostatus of the patient, on treatment with ART.
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