Social stigma associated with TB and HIV/AIDS among Kudumbashree members: A crosssectional study.

INTRODUCTION: TB and HIV/AIDS are the two major public health problems. Stigma and discrimination has an enormous impact on the sufferers. The impact is felt at home, in workplace, and at the institutions. The objective of the current study was to measure the stigma and discrimination associated with TB and HIV/AIDS and to determine the underlying factors related to it among women self-help group members in Kochi city Kerala.
METHODS: A cross-sectional study was carried out among the women self-help group members in Kochi city. A total of 135 participants were included in the study. The study tool was a pretested self-administered questionnaire which captured information regarding the sociodemographic profile and stigma towards TB and HIV/AIDS. RESULT: All the respondents were women with mean age group 47.1(SD- 10.7). Majority (60%) belonged to APL category and were Hindus (52.1%). All the members have heard about HIV/AIDS and TB. The respondents reported that they would not send their children for playing with infected people (TB-49.3%; HIV-37.1%), would stay away from infected people (TB-84.3%; HIV-67.1%), and had discomfort while approaching those are infected (TB-62.1%; HIV-59.3%). Stigma toward TB and HIV was found not to have any association with any of the socio demographic factors. Correlation was observed between stigma scores of TB and HIV/AIDS (r = 0.853; P = <0.001).
CONCLUSION: Stigma toward TB and HIV still exists as a major issue even among women self-help group members in Kochi. It was observed that those who had stigma toward TB also had stigma toward HIV/AIDS. Therefore is need to create holistic awareness about these diseases among women self-help groups. Copyright:

Introduction

Tuberculosis and HIV are two infectious diseases that cause a major burden to developing countries. Caring for patients suffering from both diseases are a major public health challenge.[1] India accounts for one-fifth of the TB cases in the world with 1.8 million new cases occurring annually in India.[2] While 2.1 million people are living with HIV/AIDS making India the third largest country to be affected with HIV/AIDS epidemic.[3] Individuals with HIV and/or tuberculosis often fall prey to various forms of stigma and this affects their quality of life.[4] It has been over 50 years since the influential work on stigma by Goffman has been published. More recently, Weiss and Ramakrishna (2006) defined health-related stigma as “a social process or related personal experience characterized by exclusion, rejection, blame or devaluation that results from experience or reasonable anticipation of an adverse social judgement about a person or group identified with a particular health problem.”[5]

Stigma plays a huge role as a barrier in the prevention and control of HIV/AIDS and TB. As it can prevent people from utilizing the healthcare services for getting tested for HIV and TB, adhering to treatment and its prevention and control. Both the conditions are highly stigmatized with considerable discrimination toward the sufferers.[6] The government aims to mitigate stigma and discrimination toward these diseases in the community using the help of Kudumbashree members.[7] Kudumbashree is a unique initiative of Government of Kerala for empowering women by creating local women self-help groups who run micro enterprises.[8] These community volunteers have been used by the health system in the past for creating health awareness in their respective communities. It was been planned to utilize the services of these Kudumbashree members in the future to spread awareness regarding TB and HIV/AIDS and also for conducting vulnerability mapping.[9] Therefore, it is crucial to understand the level of stigma the Kudumbashree members have towards TB and HIV/AIDS patients before recruiting them as health awareness ambassadors.

Therefore, our study aimed to assess the whether the Kudumbashree members of the Ernakulam district had social stigma towards TB and HIV/AIDS and to find the sociodemographic factors associated with stigma.

Methodology

The cross-sectional study was carried out after obtaining institutional ethical committee clearance. All Kudumbashree members of Ernakulam district were invited for a meeting conducted at the town hall. A total of 250 members were present for the meeting. The purpose of the study was explained to them and informed consent was obtained from the study participants. Ethical committee clearance was obtained from the institutional ethical committee clearance on 21st May 2019.

The sample size was calculated using the formula 4pq/d2, where the prevalence (p) was taken to 45% as per a study done by Duko et al.[10] q = 55% (100-p) and the absolute error d = 20%. The minimum sample size calculated was 123. A self-administered Malayalam questionnaire was distributed to a total 250 Kudumbashree members. However, excluding the grossly under filled questionnaire a total of 140 participants were included in the study.

The questionnaire was in Malayalam and it had two parts consisting of questions regarding sociodemographic profile and about stigma regarding TB and HIV/AIDS. Sociodemographic details such as age, religion, education, and socioeconomic status were collected. The stigma toward HIV/AIDS and TB was captured using a questionnaire adapted from Annelis van rie et al.[11] The results were tabulated by giving all the correct answers a score of 1 and the incorrect answers a score of 0. Data was analyzed using SPSS version 21, Chi-square test was used to compare stigma toward HIV/AIDS and TB.

Results

All the respondents were females and the mean age was 47.1 (SD: 10.7) with majority (77.9%) of them being in the age group of 31–59 years. Only 37.1% of the Kudumbashree members were found to have an education of more than high school. Most (60%) of them belonged to APL category and were Hindus by (52.1%) religion. The details of sociodemographic profile is given in Table 1.

Table 1

Distribution of kudumbashree members based on their socio-demographic profile

Sociodemographic Profile	Numbers	Percentage
AGE
<30 YEARS	7	5.0
31-59 YEARS	109	77.9
MORE THAN 60 YEARS	24	17.1
RELIGION
Hindu	73	52.1
Christian	55	39.3
Muslim	10	7.1
Others	2	1.4
EDUCATION
HIGH SCHOOL AND LESS	88	62.9
MORE THAN HIGH SCHOOL	52	37.1
SOCIO ECONOMIC STATUS
APL	84	60.0
BPL	56	40.0

It was observed that the stigma associated with HIV/AIDS and TB differed in most aspects. Most of them (84.9%) would keep a secret about a TB infected family member more than an HIV/AIDS infected member (68.6%). At the same time, they were more willing to take care of an HIV/AIDS patient (59.3%) at home rather than a TB patient (22.9%).

34.3% of the members were willing to buy things from a known TB infected shopkeeper, while only 28.6% was willing to buy from a known HIV infected shopkeeper. It was observed that of the respondents 37.1% were willing to allow a HIV infected child to attend school while 49.3% were willing to allow a TB infected child. Similarly, 37.9% of the respondents were willing to have a HIV infected teacher to continue teaching while only 30.1% consented to have a teacher who was infected by TB.

It was also observed that stigma was more toward TB rather than HIV/AIDS. Most of them were more afraid (80.7%) of a TB patient rather than HIV/AIDS patient. They felt the need to avoid a TB patient (80.7%) in the community more than an AIDS patient (66.4%). This was probably because 84.3% felt more disgusted while seeing a TB infected person than an AIDS patient (70.7%). Hence, most (84.3%) stated that they would stay away from a TB patient rather than from an AIDS patient (67.1%) and 80% felt that a TB patient was unclean. The details are provided in Table 2.

Table 2

Distribution of kudumbasree members based on their stigma towards tb and hiv/aids patients

Stigma towards TB and HIV/AIDS	TB No. (%)	HIV/AIDS No. (%)
	Yes	Yes
1. Willing to buy something from a shopkeeper who is infected with	48 (34.3)	40 (28.6)
2. If a family member is infected will you keep it secret	123 (84.9)	96 (68.6)
3. If a family member get infected will you take care in your home itself	32 (22.9)	83 (59.3)
4. Will you allow an infected teacher to continue teaching	53 (37.9)	42 (30.0)
5. An infected person should be treated in the same hospital with uninfected people	53 (37.9)	35 (25.0)
6. An infected person should be allowed to work in the same workplace along with uninfected people	43 (30.7)	30 (21.4)
7. An infected person should be allowed to have food along with uninfected people	51 (36.4)	40 (28.6)
8. Do you feel any discomfort while approaching who is infected with	87 (62.1)	83 (59.3)
9. An infected should be avoided from the community	114 (81.4)	95 (67.9)
10. Will you hesitate to communicate who is infected with	35 (25.0)	36 (25.7)
11. Will you hesitate to touch who is infected with	48 (34.3)	47 (33.6)
12. Are you afraid of who is infected with	113 (80.7)	93 (66.4)
13. An infected child allowed to attend school with other uninfected children	69 (49.3)	52 (37.1)
14. Knew a person who is infected with	95 (67.9)	93 (66.4)
15. Do you feel disgusting while seeing who is infected with	118 (84.3)	99 (70.7)
16. Do you stay away from who is infected with	118 (84.3)	94 (67.1)
17. An infected person is not clean	112 (80.0)	90 (64.3)
18. An infected person gets all his/her needs done	104 (74.3)	91 (65.0)

It was observed that none of the sociodemographic factors were associated with stigma regarding TB and HIV/AIDS [Tables 3 and 4]. However, it was observed that study participants who had stigma toward TB were also found to have stigma towards HIV/AIDS (r = 0.853). [Table 5].

Table 3

Socio demographic variables associated with stigma regarding tuberculosis

Characters	Category	Low Stigma (%)	High Stigma (%)	Chi-Square	P
AGE	<30 YRS	50.0	50.0
	31-59	43.8	56.2	2.754	0.252
	>60 YRS	62.5	37.5
RELIGION	HINDU	47.9	52.1
	CHRISTIAN	44.2	55.8	2.463	0.482
	MUSILM	50.0	50.0
EDUCATION	HIGH SCHOOL AND LESS	47.7	52.3
	MORE THAN HIGH SCHOOL	46.9	53.1	0.007	0.934
SOCIO ECONOMIC STATUS	APL	43.9	56.1	1.029	0.310
	BPL	52.8	47.2

Table 4

Socio demographic variables associated with stigma regarding hiv/aids

Characters	Category	Low Stigma (%)	High Stigma (%)	Chi-Square	P
AGE	<30 YRS	5 (71.4)	2 (28.6)
	31-59	41 (48.2)	44 (51.8)	3.084	0.214
	>60 YRS	9 (69.2)	4 (30.8)
RELIGION	HINDU	32 (59.3)	22 (40.7)
	CHRISTIAN	20 (45.5)	24 (54.7)	2.125	0.346
	MUSILM	3 (42.9)	4 (57.1)
EDUCATION	HIGH SCHOOL AND LESS	32 (50.8)	31 (49.2)
	MORE THAN HIGH SCHOOL	23 (54.8)	19 (45.2)	0.159	0.690
SOCIO ECONOMIC STATUS	APL	32 (52.5)	29 (47.5)
	BPL	23 (52.3)	21 (47.7)	0.000	0.985

Table 5

Association Between The Stigma Scores Of Tb And Hiv/Aids

TB	HIV/AIDS		P	Chi-Square
	Low Stigma	High Stigma
Low Stigma	47 (90.4%)	5 (9.6%)	0.000	60.782
High Stigma	6 (12.5%)	42 (87.5%)

Discussion

The aim of our study was to assess whether the Kudumbashree members of the Ernakulam district had social stigma toward TB and HIV/AIDS patients. This information was required since, the local self-government along with the health system aimed to utilize the services of these women self-help group members for mitigating to stigma regarding TB and HIV/AIDS among the community members.[12] This activity was planned as a part of community mobilization toward TB elimination. A study done by Thomas B, et al. has highlighted that sensitizing SHGs through model TB sensitization program has aided in strengthening the TB prevention and control activities in communities.[13]

The study was able to highlight the fact that those who had stigma toward TB also had stigma toward HIV. Studies have stated in the past that even though TB and HIV are different bio medically, the origin of stigma and its impact were found to be the same. Factors resulting in stigma against TB and HIV are because both these diseases result in severe morbidities, it can be easily transmissible to others, and also because the general population perceive that these diseases are usually found among people who are different and have a deviant behavior.[1314]

Stigma resulting from TB and/or HIV has found to occur in various contexts such as in the society, family, place of work, healthcare system, etc.[15] Both these diseases have made the patient get isolated from their friends and family members. It has resulted in many of them losing their jobs, getting excluded from their societies and families.[1617181920] The fear of stigma has had a negative impact on the health status of the people since it prevents people from accessing or adhering to the healthcare services.[15]

Scaling up of advocacy, communication and social mobilization (ACSM) in the community has been identified to be a crucial step for achieving the ultimate goal of TB elimination and also for reversing the trend of HIV/AIDS.[21] To conclude, this study was able to identify Khudumashree members as the ideal ambassadors for ACSM against TB and HIV in their local communities. Therefore the primary care physicians can utilize the services of these women self-help groups for widening their reach of health promotion and preventive activities in the communities.

Declaration of patient consent

The authors certify that they have obtained all appropriate patient consent forms. In the form the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.