|Year : 2022 | Volume
| Issue : 1 | Page : 62-69
Stigma and its Associated Factors among People Living with HIV/AIDS (PLHA) Attending ART Centre in a Tertiary Care Institute in Kolkata
Kaushik Adhikari1, Debashis Dutt2, Dipak Pal3, Suprakas Hazra3
1 Department of Community Medicine, Malda Medical College and Hospital, Malda, West Bengal, India
2 Department of Public Health Administration, All India Institute of Hygiene and Public Health, Kolkata, West Bengal, India
3 Department of Epidemiology, All India Institute of Hygiene and Public Health, Kolkata, West Bengal, India
|Date of Submission||25-Jul-2021|
|Date of Decision||13-Dec-2021|
|Date of Acceptance||02-Jan-2022|
|Date of Web Publication||21-Jan-2022|
Dr. Kaushik Adhikari
Department of Community Medicine, 8, Santashree, PO: Hridaypur, North 24 Parganas, Pin-700127, Kolkata, West Bengal
Source of Support: None, Conflict of Interest: None
Background: AIDS stigma exists in a variety of ways, including ostracism, rejection, discrimination, and avoidance of HIV-infected people. Some people are rejected by family and community, whereas others face poor treatment in healthcare and educational settings, erosion of their rights, and psychologic damage. All these limit access to HIV testing, treatment, and other HIV services. Objectives: This study was undertaken to determine the proportion of patients with severe stigma among people living with HIV/AIDS (PLHA) and to identify the factors associated with it. Materials and methods: It was a cross-sectional study conducted among 444 PLHA, attending ART center of a tertiary care institute of Kolkata, chosen by systematic random sampling. Berger scale was used to classify stigma as no, mild, and severe stigma. Logistic regression analyses were performed to identify the risk factors. Results: About 32.7% of PLHA had experienced severe forms of stigma. These were severe forms of personalized stigma (33.8%), negative self-image (25.9%), perceived public attitude (27.5%), and disclosure concerns (30.0%). Overall severe stigma was higher in females (33.3%) than males (31.8%). After binary logistic regression, factors significantly associated with severe stigma included age [adjusted odds ratio (AOR) 1.564 (1.071–2.285), sig: 0.021], socioeconomic status [AOR 0.748 (0.574–0.974), sig: 0.031], HIV status known to the partner [AOR 19.965 (3.3673–78.357), sig: <0.0001], presence of comorbidities [AOR 8.497 (3.541–20.389), sig: <0.0001], and possible mode of transmission not known by the patient [AOR 0.615 (0.380–0.993), sig: 0.047]. Conclusion: Study found that those who were older, who were from lower socioeconomic group, whose partner knew their disease status, who were having comorbidities, and who do not know their mode of infection experienced a higher level of HIV-related stigma.
Keywords: ART center, associated factors, Berger scale, HIV/AIDS, PLHA, stigma
|How to cite this article:|
Adhikari K, Dutt D, Pal D, Hazra S. Stigma and its Associated Factors among People Living with HIV/AIDS (PLHA) Attending ART Centre in a Tertiary Care Institute in Kolkata. MAMC J Med Sci 2022;8:62-9
|How to cite this URL:|
Adhikari K, Dutt D, Pal D, Hazra S. Stigma and its Associated Factors among People Living with HIV/AIDS (PLHA) Attending ART Centre in a Tertiary Care Institute in Kolkata. MAMC J Med Sci [serial online] 2022 [cited 2022 May 24];8:62-9. Available from: https://www.mamcjms.in/text.asp?2022/8/1/62/336232
| Introduction|| |
As per the recently released, India HIV Estimation 2019 report by National AIDS Control Organization of India, overall, the estimated adult (15–49 years) HIV prevalence trend has been declining in India since the epidemic’s peak in the year 2000 and has been stabilizing in recent years. The estimate for this indicator was 0.22% (0.17–0.29%) in 2019. In the same year, HIV prevalence among adult males (15–49 years) was estimated at 0.24% (0.18–0.32%) and among adult females at 0.20% (0.15–0.26%). AIDS stigma exists around the world in a variety of ways, including ostracism, rejection, discrimination, and avoidance of HIV-infected people. The consequences of stigma and discrimination are wide ranging. Some people are shunned by family, peers, and the wider community, while others face poor treatment in healthcare and educational settings, erosion of their rights, and psychologic damage. These all limit access to HIV testing, treatment, and other HIV services. Stigma-related violence or the fear of violence prevents many people from seeking HIV testing, returning for their results, or securing treatment, possibly turning what could be a manageable chronic illness into a death sentence and perpetuating the spread of HIV.,, Literature revealed a higher level of stigma among people living with HIV/AIDS (PLHA) in India.,, Many instances of discriminatory behavior such as denial of hospital care, expulsion from the home, and profession were also reported., A recent study found that enacted and internalized stigmas among PLHA were related to delays in seeking care. There are not many studies on stigma in PLHA in West Bengal. This study was undertaken among the PLHA attending ART center of a tertiary care Institute of Kolkata to determine the proportion of patients with severe stigma among PLHA attending ART center and to identify the factors associated with it.
| Materials and Methods|| |
This hospital-based cross-sectional study was conducted at ART center of a tertiary care institute of Kolkata among the patients attending ART center of the studied institute, who came in outdoor for treatment. Considering the prevalence of severe stigma of 26% (based on a similar study conducted in South India), with the confidence level as 95% and absolute error as 5%, the calculated sample size was 296. With design effect of 1.5, the final sample size was 444. Type of sampling was systematic random sampling. Considering that each patient would take 30 minutes to complete the total interview. It was estimated that maximum of 10 patients would be interviewed in a day. Average attendance of new patient in the outdoor was approximately 100 per day. Accordingly, the sampling interval was 100/10 = 10. The first patient enquired was chosen randomly using random number table and subsequently patient was enquired at every tenth patient till the required number of subjects of the sample size of 444 was obtained. Data were collected by personal interview using predesigned questionnaire.
Inclusion and exclusion criteria
PLHA aged between 18 and 60 years and who consented to participate was included in the study. PLHA who were too sick or unwilling to answer the questions were not included in the study.
Data were analyzed by SPSS 23.0 and MS-excel 2016 (IBM SPSS Statistics 23.0, Microsoft Excel 2016) and was represented by various tables. In addition to descriptive analyses, univariate analyses were carried out to determine the association between the sociodemographic variables and outcome variables. The degree of association was determined by Chi-square test. P < 0.05 was considered to be statistically significant. Binary logistic regression was performed for the factors associated with severe stigma. The variables that were significant at P < 0.40 were considered as potential risk factors for multivariate analyses. Enter method was used to obtain odds ratio and 95% confidence interval. Hosmer and Lemeshow Chi-square test was used to assess the goodness of fit of the model. Cox and Snell R2 were used.
Stigma and Berger scale
Stigma was measured by using the Berger scale. This 40-item four-point scale groups stigma into four categories: personalized stigma (self-stigma); perceived public attitude (concern with public attitude about people with HIV); disclosure concerns; and negative self-image (internalized negative self-image). With increase in score, stigma will be higher: (1) personalized stigma (18 items), which measure the consequences of others knowing about one’s HIV status, including rejection, loss of friends, and avoidance of others; (2) disclosure concerns (10 items), which measure issues related to whether or not individuals tell others about their diagnosis; (3) negative self-image (13 items), which measure one’s feelings toward oneself such as shame, guilt, and self-worth; (4) concern with public attitudes (20 items), which measure participants’ perceptions of the public’s attitudes toward those living with HIV/AIDS.
Scoring for the Berger HIV stigma scale and subscales are as follows: strongly disagree (SD) = 1, disagree (D) = 2, agree (A) = 3, and strongly agree (SA) = 4. If a subject selects a response in-between two options (e.g., between SD and D), a numerical value midway between the two options would be used (e.g., 1.5). Two items are reverse scored: items 8 and 21. After reversing these two items, each scale’s or subscale’s score is calculated by simply adding up the raw values of the items belonging to that scale or subscale. Sixteen items belong to more than one subscale, reflecting the intercorrelations of the factors on which the subscales are based.
The range of possible scores depends on the number of items in the scale. For the total HIV stigma scale, scores can range from 40 to 160 [1 × 40 items to 4 × 40 items]. For the personalized stigma subscale, scores can range from 18 to 72. For the disclosure subscale, scores can range from 10 to 40. For the negative self-image subscale, scores can range from 13 to 52. For the public attitude subscale, scores can range from 20 to 80. In the Berger scale, the overall internal consistency (Cronbach alpha) for the entire 40-item scale was 0.79. The Cronbach alpha for self, public attitude, disclosure, and negative stigma was 0.76, 0.79, 0.62, and 0.85, respectively. The test and retest reliability for the overall 40 items was 0.89.
Ethical approvals of the Institutional Ethics Committees were obtained before conducting the study the informed consent was taken from each participant’s prior recruitment in the study.
| Results|| |
Among the total 444 study subjects 54.7% were female and 45.3 % were male. Most of the study subjects were ≤50 years of age group (69.4%), Hindu predominance (82.0%), and general caste predominance (71.2%). Among total respondents, 59.3% were resident of Kolkata, only 3.6% had migration history, and 5% were illiterates and 86.9% did not complete their higher secondary education. Most of them (86.7%) were currently married and age of marriage were mostly (73.4%) between 18 and 30 years. About 45% and 55% population belonged to joint family and nuclear family, respectively. Most of the respondents were living with their family, only 4.7% were living alone. According to BG Prasad sociodemographic scale (modified in 2018) 25.2%, 34.0%, 25.9%, 14.2%, and 0.7% of them belonged to classes I, II, III, IV, and V, respectively, and 50.7% of them had personal income less than Rs 5000 per month. Among total study subjects, 6.5% were in nonincome group and 2.0% revealed their job as sex worker, and 6.5% of them use tobacco, alcohol, or both at the time of study. Among them, 2% were homosexual and 42.1% were having multiple sexual partners, 88.1% of the patients’ partner knew about their HIV status. Among total respondents 49.3% were having their diagnosis carried out within last 5 years, 28.2% started taking medication for last 1 year, treatment not started for 8.6% respondents, 8.3% of them had associated comorbidities at the time of the study, 31.1% did not know about their possible mode of HIV transmission.
Regarding the personalized stigma according to Berger scale, mean score was 32.35 ± 6.69 and severe stigma among 33.8% of the participants. Severe stigma was higher among males (36.3%) than females (31.7%).
Regarding the disclosure concern according to Berger scale, mean score was 17.98 ± 2.72 and severe stigma 30.0% among the participants. Severe stigma was higher in females (31.3%) than males (28.4%).
Regarding the negative self-image according to Berger scale, mean score was 23.06 ± 3.03, and severe stigma 25.9% among the participants. Severe stigma was higher in males (28.9%) than females (23.5%).
Regarding the perceived public attitudes according to Berger scale, mean score was 33.91 ± 5.25 and severe stigma 27.5% among the participants. Severe stigma was higher in females (29.6%) than males (24.9%).
Regarding the overall stigma according to Berger scale, mean score was 70.36 ± 9.82, and severe stigma 32.7% among the participants. Overall severe stigma was higher in females (33.3%) than males (31.8%).
Factors associated with stigma: In this study, severe stigma was higher among above median age group (≥45 years), females, non-Hindus, who lived in Kolkata, nonmigrants, education level more than primary, unmarried, widows, who lived in joint family, who lived with family members, earning above 50th percentile, low socioeconomic status, employed persons, not substance user, homosexual, having single sexual partner, whose partner knows about their HIV status, HIV diagnosed for more than 5 years, who were receiving treatment, having comorbidities, and who did not know their mode of HIV transmission [Table 1] and [Table 2]. After binary logistic regression [Table 3], few factors were significantly associated with severe stigma. Those are age [adjusted odds ratio (AOR) 1.564 (1.071–2.285), sig: 0.021] had positive correlation with stigma, socioeconomic status [AOR 0.748 (0.574–0.974), sig: 0.031] had negative correlation with stigma, HIV status known to the partner [AOR 19.965 (3.3673–78.357), sig: <0.0001], this factor was positively correlating with stigma, comorbidities [AOR 8.497 (3.541–20.389), sig: <0.0001] had positive correlation with stigma, and possible mode of transmission known by the patient [AOR 0.615 (0.380–0.993), sig: 0.047] had negative correlation with stigma.
|Table 1 Association between sociodemographic variables and severe stigma (n = 444)|
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|Table 2 Association between HIV-related variables and severe stigma (n = 444)|
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|Table 3 Multivariate analysis of independent variables and stigma (total stigma scores according to Berger scale)|
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- Model fitness: significant omnibus Chi-square (0.000)
- Nonsignificant Hosmer–Lemeshow test (0.428)
- Cox and Snell R2: 0.164, Nagelkerke R2: 0.229
- 16.4% to 22.9% variance of the dependent variables can be explained by the independent variables.
- Overall prediction of the model is 71.8%.
- Significant covariates from the model: Age, socioeconomic status, status known to the partner of the patient, comorbidities, and knowledge of possible mode of transmission by the patient.
| Discussion|| |
Prevalence of severe stigma in India varies in various studies. Different stigma scales have been followed by different researchers which include Berger stigma scale, internalized AIDS-related stigma scale, HIV associated stigma scale (HASS), Indian stigma scale, Sowell stigma scale, Fife and Wright scale, and many other self-made scales. Among them, we used Berger scale as reference scale to determine the severity of stigma in our study. For categorization of stigma 33rd and 66th percentile cutoff values were taken. Below 33rd percentile was taken as no or mild stigma, above 66th percentile was taken as severe stigma and values in between them were taken as moderate stigma. (This categorization has been used previously by an Indian study and also by another Asian studies.) In this study, regarding overall stigma, it was found that 36.0% had no stigma, 31.3% moderate stigma, and 32.7% had severe stigma. Severe stigma was higher in females (33.3%) than males (31.8%). An Indian study by Charles et al. mentioned that 27% of PLHA had experienced severe forms of stigma. These were severe forms of personalized stigma (28.8%), negative self-image (30.3%), perceived public attitude (18.2%), and disclosure concerns (26%). Subramanian et al. also found similar prevalence of stigma which was mentioned by 33%. All four categories of stigma were experienced on a higher proportion by females than males. Thomas et al. also revealed stigma experienced among those infected with HIV was 26%. Ashaba et al. revealed 41% high level of stigma among PLHA and Simbayi et al. revealed 40% experienced discrimination among PLHA. Above findings are similar with our study.
Though several socioeconomic variables had association with stigma in univariate analysis, after multiple logistic regressions few factors were significantly associated with severe stigma. These are age [AOR 1.564 (1.071–2.285), sig: 0.021] which had positive correlation with stigma, socioeconomic status [AOR 0.748 (0.574–0.974), sig: 0.031] had negative correlation with stigma, HIV status known to the partner [AOR 19.965 (3.3673–78.357), sig: 0.000], this factor was positively correlating with stigma, Comorbidities [AOR 8.497 (3.541–20.389), sig: 0.000] had positive correlation with stigma, and possible mode of transmission known by the patient [AOR 0.615 (0.380–0.993), sig: 0.047] had negative correlation with stigma. Study conducted by Steward et al. revealed that enacted and internalized stigmas were correlated with delays in seeking care after testing HIV positive. Dasgupta et al. found that lower CD4 count, residence, presence of extended family in the household, and employment were associated with higher stigma. Thomas et al. inferred that internalizing of stigma was found to have a highly significant negative correlation with quality of life in the psychologic domain and a significant negative correlation in the environmental domain. Various studies carried out outside India found different associated factors affecting stigma. These include psychologic variables, social support, quality of life,; spiritual beliefs and age; anxiety and depression; mental and physical functioning, disclosure regret disease severity; multiple sex partners, living with family/friends; homelessness, substance use, and mental health; depression and substance use problems; married status, education level, and history of opportunistic infection; job, family support, and residence; HIV status disclosure to participants’ last sexual partner and to family members.
To cope with stigma, every PLHA should get treatment or psychologic counseling, should not isolate themselves, and should not let stigma create self-doubt and shame. To combat stigma among the PLHA, comprehensive programs including education to understand complexities and factors which surround HIV/AIDS, can work toward reducing its stigmatization. Support groups/network, including PLHA and other stakeholders, might also help to reduce stigma at the individual level. More mass-media campaign on HIV/AIDS, its causes, knowledge, and prevention and moving away from just a negative focus on risks/blaming of individuals, may work toward encouraging compassion, understanding, and reducing stigma which is deeply embedded in the society.
Strength and limitations
There are not many studies on stigma in PLHA in West Bengal as well as eastern India with this large sample size (444). This study may bring some additions to already existing data of the particular region but the study has certain limitations; the fact that data collection was carried in urban hospital setup limits the generalizability of the results to rural populations and community level populations. The possibility of conscious falsification on the sensitive issues (e.g., tobacco and alcohol use pattern, no of sexual partners, and sexual orientation) could not be ruled out as it was collected in crowded outdoor, despite the sincere efforts by the researcher to maintain privacy and confidentiality. Being a cross-sectional study, possibility of bias due to recall could not be ruled out; hence, the level of stigma at detection of the study was not measured.
| Conclusion|| |
From the study, it was noted that those who were older, who were from lower socioeconomic group, whose partner knew their disease status, who were having comorbidities, and who do not know their mode of infection experienced a higher level of HIV-related stigma. Therefore, stigma reduction interventions are needed in these vulnerable groups. It may be concluded that ensuring high quality comprehensive services at the ART centers and a high level of social support for the PLHA are vital and would lead to a decrease in stigma.
The authors thank Dr Indraneel Saha, Dr GK Pandey, Dr Subhasish Kamal Guha, and staffs of ART centers for their support.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Stangl AL, Lloyd JK, Brady LM, Holland CE, Baral S. A systematic review of intervention to reduce HIV-related stigma and discrimination from2002 to 2013: how far have we come? JIAS 2013;16(Supplement 2):18734.
Priya R, Sathyamala C. Contextualizing AIDS and human development: long-term illness and death among adults in labouring low-caste groups in India. AIDS Care 2007;19(Suppl 1):S35-S43.
Steward WT, Herek GM, Ramakrishna J et al
. HIV-related stigma: adapting a theoretical framework for use in India. Soc Sci Med 2008; 67:1225-35.
Subramanian T, Gupte M, Dorairaj V, Periannan V, Mathai A. Psycho-social impact and quality of life of people living with HIV/AIDS in South India. AIDS Care 2009; 21:473-81.
Thomas B, Rehman F, Suryanarayanan D et al
. How stigmatizing is stigma in the life of people living with HIV: a study on HIV positive individuals from Chennai, South India. AIDS Care 2005; 17:795-801.
Stevelink SAM, Van Brakel WH, Augustine V. Stigma and social participation in southern India: differences and commonalities among persons affected by leprosy and persons living with HIV/AIDS. Psychol Health Med 2011; 16:695-707.
Bharat S, Aggleton P, Tyrer P. India: HIV and AIDS-related discrimination, stigmatization and denial. Geneva: Joint United Nations Programme on HIV/AIDS, UNAIDS; 2001:3. Available at http://www.hivpolicy.org/bib/HPP000715.htm
. Accessed October 12, 2016.
Pallikadavath S, Garda L, Apte H, Freedman J, William S. HIV/AIDS in rural India: context and health care needs. J Biosoc Sci 2005; 37:641-55.
Mahendra VS, Gilborn L, Bharat S et al
. Understanding and measuring AIDS-related stigma in health care settings: a developing country perspective. Sahara J 2007; 4:616-25.
Maman S, Abler L, Parker L et al
. A comparison of HIV stigma and discrimination in five international sites: the influence of care and treatment resources in high prevalence settings. Soc Sci Med 2009; 68:2271-8.
Charles B, Jeyaseelan L, Pandian AK, Sam AE, Thenmozhi M, Jayaseelan V. Association between stigma, depression and quality of life of people living with HIV/AIDS (PLHA) in South India − a community based cross sectional study. BMC Public Health 2012; 12:463.
Berger BE, Ferrans CE, Lashley FR. Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. Res Nurs Health 2001; 24:518-29.
Li Z, Morano JP, Khoshnood K, Hsieh E, Sheng Y. HIV-related stigma among people living with HIV/AIDS in rural Central China. BMC Health Serv Res 2018; 18:453.
Thomas BE, Rehman F, Suryanarayanan D et al
. How stigmatizing is stigma in the life of people living with HIV: a study on HIV positive individuals from Chennai, South India. AIDS Care 2005; 17:795-801.
Ashaba S, Cooper-Vince C, Maling S, Rukundo GZ, Akena D, Tsai AC. Internalized HIV stigma, bullying, major depressive disorder, and high-risk suicidality among HIV-positive adolescents in rural Uganda. Glob Ment Health (Camb) 2018; 5:e22.
Simbayi LC, Kalichman S, Strebel A, Cloete A, Henda Nomvo, Mqeketo A. Internalized stigma, discrimination, and depression among men and women living with HIV/AIDS in Cape Town, South Africa. Soc Sci Med 2007;64:1823-31.
Steward WT, Bharat S, Ramakrishna J, Heylen E, Ekstrand ML. Stigma is associated with delays in seeking care among HIV-infected people in India. J Int Assoc Provid AIDS Care 2012; 12:103-9.
Dasgupta S, Sullivan PS, Dasgupta A, Saha B, Salazar LF. Stigma and access to HIV care among HIV-infected women in Kolkata, West Bengal. J Int Assoc Provid AIDS Care 2011; 12:44-9.
Kumar S, Mohanraj R, Rao D, Murray KR, Manhart LE. Positive coping strategies and HIV-related stigma in south India. AIDS Patient Care STDS 2015; 29:157-63.
Rasoolinajad M, Abedinia N, Ali Noorbala A et al
. Relationship among HIV-related stigma, mental health and quality of life for HIV-positive patients in Tehran. AIDS Behav 2018; 22:3773-82.
Zarei N, Joulaei H. The impact of perceived stigma, quality of life, and spiritual beliefs on suicidal ideations among HIV-positive patients. AIDS Res Treat 2018; 2018:6120127.
Murphy P, Garrido-Hernansaiz H, Mulcahy F, Hevey D. HIV-related stigma and optimism as predictors of anxiety and depression among HIV-positive men who have sex with men in the United Kingdom and Ireland. AIDS Care 2018; 30:1173-9.
Dibb B. Assessing stigma, disclosure regret and posttraumatic growth in people living with HIV. AIDS Behav 2018; 22:3916-23.
Shrestha R, Altice FL, Sibilio B et al
. HIV sero-status non-disclosure among HIV-infected opioid-dependent individuals: the roles of HIV-related stigma, risk behavior, and social support. J Community Health 2019; 44:112-20.
Davila JA, Cabral HJ, Maskay MH et al
. Risk factors associated with multi-dimensional stigma among people living with HIV/AIDS who are homeless/unstably housed. AIDS Care 2018; 30:1335-40.
Earnshaw VA, Kidman RC, Violari A. Stigma, depression, and substance use problems among perinatally HIV-infected youth in South Africa. AIDS Behav 2018; 22:3892-6.
Pourmarzi D, Khoramirad A, Gaeeni M. Perceived stigma in people living with HIV in Qom. J Family Reprod Health 2017; 11:202-10.
Overstreet NM, Earnshaw VA, Kalichman SC, Quinn DM. Internalized stigma and HIV status disclosure among HIV-positive black men who have sex with men. AIDS Care 2013; 25:466-71.
[Table 1], [Table 2], [Table 3]