Indian Journal of Community Medicine

ISSN No. 0970-0218

Aarti Kaulagekar, Amruta Godbole

People living with HIV/AIDS received negative response from community largely because of misconceptions and lack of knowledge about the disease. Stigma acts as a major obstruction in the rehabilitation of people infected and affected by HIV in India.¹ A persistently negative societal response plays a critical role in the experiences of individuals infected with the virus.² Therefore, stigma and discrimination are of concern to AIDS programmes. According to the UNAIDS report in 2006, nearly 5.2 million people in the age group of 15-49 years are living with HIV in India.³ Denial by the society or health care system will pose a serious threat to the ongoing prevention, support and care strategies. The stigma related to HIV has been well documented in the past; however, this study attempts to understand the perceptions, opinions and attitudes of the urban educated and middle-income community members towards HIV positive individuals. HIV-related stigma has been categorized into four specific areas. The operational definitions are (i) attribution of blame, which is defined as blaming the HIV positive individual for his/her condition, (ii) violation of rights, which is defined as denial of rights to employment, health care and maintaining confidentiality about the HIV status, (iii) stigma in interaction, which is prevalent when respondents answer negatively to formal interactions or communication with HIV positive individuals (e.g. handshake, buying grocery, being served in a restaurant, etc.) and (iv) stigma at workplace, which is demonstrated by respondents by refusing to share or work with HIV positive individuals in a formal set-up and insisting on compulsory testing of the disease prior to employment and termination from jobs upon testing positive.

Materials and Methods

A cross-sectional study was carried out in the purposively selected middle-class localities in Mumbai and Pune cities.

Sample

A sample of 30 males and 30 females from different age groups was chosen and roughly classified as young (15-25), middle-aged (26-45) and adults (46-60); thus the total sample was decided to be 180 respondents. Non-response constituted 6%; in the pretesting stage, hence, four respondents were added up in each age category, totaling to 192 respondents. Households were approached in serial manner in the purposively selected localities; depending upon the strength of the family, respondents were recruited to reach up to the decided sample size. Some respondents volunteered and insisted on taking their views; five such respondents were added to the final analysis. Thus, the total analysis was based on 197 individuals.

Data collection tools

A pretested questionnaire printed in vernacular and English language was handed over after informing and seeking oral consent from the respondents to participate in the study. The questionnaire comprised of socioeconomic characteristics, knowledge about HIV/AIDS and a series of questions under four sections, namely attribution of blame, stigma in interaction, violation of rights and stigma at workplace.

Data recording and analysis

The study was carried out in 2005-2006 after seeking departmental ethical clearance. The responses were recorded on a five-point scale constructed for the purpose of this study: “strongly agree,” “agree,” “disagree,” “strongly disagree” and “do not know” with a score ranging between 0 (do not know) and 4 (strongly agree). The statements were constructed in such a manner that “strongly agree” suggested low level of stigma, while “strongly disagree” suggested high level of stigma. The cumulative scores were further classified into low, medium and high level of stigma. The scoring categories were 0-4 as high level of stigma, where respondents consistently provided negative responses. Scores 5-8 marked medium stigma and 9-12 marked low level of stigma. A score range of 5-8 indicated an added effect to disagree for some statements (an indicator of having stigma of medium degree). A score between 9 and 12 indicated an added effect to strongly agree or agree, giving a positive reaction (suggesting very low level of perceived stigma).

The results are, therefore, discussed in the light of low, medium and high categories of stigma. The influence of socio-demographic factors and knowledge of HIV on the level of stigma was statistically calculated using P-values.

Results

A total of 197 respondents, comprising 98 (49%) females and 99 (50%) males, participated in the study. The sample consisted of students (24.36%), working class (54.31%) and unemployed (mostly housewives, 19.2%) respondents with almost equal distribution across various age groups between 15 and 65 years. Nearly 30% were undergraduates while the remainder completed graduation and above. The stigmatizing attitude and discrimination is closely related to the knowledge of the people regarding HIV/AIDS. It was seen that 37.56% of the respondents had full knowledge about all modes of transmission and ways of preventing the transmission, whereas 44.67% had partial knowledge, and were able to recall only one or two modes of transmission and prevention of HIV, and 17.76% had no knowledge of HIV/AIDS.

Attribution of blame

Attribution of blame was included to study the community’s reactions, whether they emphasize to blame the HIV positive individual for his/her conditions. As mentioned more than half of the respondents showed medium (44.6%) and high (18.46%) levels of stigma by blaming the affected individual for the disease. They mentioned that it was one’s own fault if he or she had got HIV/AIDS. This feeling was common among young and late middle-aged group and across genders. Respondents who were highly educated (P = 0.014) had full knowledge regarding HIV/AIDS (P = 0.047) and those employed (P = 0.02) displayed relatively low level of stigma while the remainder attributed blame to the affected individuals.

Violation of rights

The community’s responses towards basic rights of HIV positive patients were elicited. The statements in the section focused on confidentiality issue, right to employment and access to health care by positive individuals. It was noted that educated (P = 0.02) individuals and those who had full knowledge (P = 0.002) regarding HIV/AIDS accepted the rights of positive individuals. Age, sex and occupation did not influence the levels of stigma. However, medium or high level of stigma was reported by many (51.77%) respondents. The results indicated that community was not interested in the positive individuals plight and found it more convenient to violate their rights.

Stigma in interaction

This section summarizes the responses acquired to the statements such as handshaking with HIV positive, buying milk or grocery from positive person or being served by positive person in a restaurant. More than 60% of the respondents did not show any stigma while remaining respondents were hesitant to agree with the statements and showed medium or high level of stigma in interaction. Unlike the initial two sections, the results were more in favour of HIV positive individuals, probably because of the hypothetical nature of the questions.

These results were not affected by any other sociodemographic variables. Although stigmatizing attitude prevailed, community interaction section indicated no obvious demonstration of such stigma in behaviour.

Stigma at workplace

In this section, four questions regarding working with HIV positive individuals, keeping in jobs upon knowing the disease, compulsory testing of the disease prior to employment, etc. were used. Respondents (52%) were more concerned about the HIV positive coworkers or employees. Respondents’ occupations, education, full knowledge about HIV and gender did not show any significant correlation with the level of stigma.

Discussion

Stigma involves attaching negative value to a particular situation. The fear and prejudice that lies at the core of HIV/AIDS discrimination needs to be tackled at the community and national levels.⁴

Table 1: Level and type of stigmatizing attitude and infl uence of socio-demographic variables

Type of stigma	Low	Medium	High
Attribution of blame	72 (36.92%)*	87 (44.61%)	36 (18.46%)
P-value	*Education P = 0.014,	*Occupation P = 0.021,	*Knowledge about HIV P = 0.047
Violation of rights	95 (48.22%)*	75 (38.08%)	27 (13.70%)
P-value	*Education P = 0.021,	*Knowledge about HIV P = 0.002
Stigma in interaction	121 (61.42%)	63 (31.97%)	13 (6.59%)
P-value	Not significant
Stigma at workplace	111 (56.34%)	81 (41.11%)	5 (2.53%)
P-value	Not significant

In the sections described earlier, low level of stigma signifies that these people are likely to have positive attitude with HIV-infected individuals while medium or high level gives the intensity of the stigma prevalent in the community. Thus, stigma was vividly displayed in the sections of “attribution of blame” and “violation of rights” and relatively less in “stigma at workplace” and “interaction with community”.

The respondents think that the victim is responsible for his/her own conditions and no damage is done in depriving them from basic rights like access to health care and gainful employment. The respondents were willing to violate the right to keep one’s HIV status confidential.

Although relatively less stigma was found in interaction and workplace sections, approximately 40% still believed that some distance in interaction should be maintained. They did not hesitate to demand disclosure of the HIV status of the co-worker and promoted testing of the employees for HIV status. Thus, contradictory results indicated “indirect” stigma in the community. Such type of stigma is commonly referred as “white-collared” stigma. Education and awareness about the disease played a vital role in determining the level of stigma.

Conclusion

Accepting a major limitation of the study that none of the respondents were living or working with HIV positive persons and that the questions put to them created a hypothetical situation, which they might face in future, the results of the study should be viewed as a “pointer” of middle-class people’s attitude towards HIV positive individuals. It can be concluded that such clues could be very well utilized for forming the target groups for health education and evolving a strategy accordingly.

References

1. Goffman E. Stigma: Notes on the management of spoiled identity. Simon and Schuster: New York; 1963.
2. Alonzo AA, Reynolds NR. Stigma, HIV and AIDS: An exploration and elaboration of stigma trajectory. Soc Sci Med 1995;41:303-15.
3. UNAIDS. Report on the global AIDS epidemic. UNAID: Geneva; 2006.
4. UNAIDS. HIV and AIDS-related stigmatization, discrimination and denial. India; 2001. School of Health Sciences, University of Pune, Pune, Maharashtra, India

Correspondence to:
Dr. Aarti Kaulagekar,
School of Health Sciences, University of Pune, Ganesh Khind Road, Pune – 411 007, Maharashtra, India.
E-mail: aarati(at)unipune.ernet.in
Received: 21.05.07
Accepted: 18.10.07