Stigma, Discrimination, and Domestic Violence Experienced by Women Living with HIV: A Cross-sectional Study from Western India.

BACKGROUND: In India, social issues such as stigma and discrimination are still experienced by many women living with HIV (WLHIV) at various levels such as family, community, or health care settings even after a decline trend in HIV prevalence.
OBJECTIVES: To assess stigma, discrimination, and domestic violence among WLHIV attending an antiretroviral therapy (ART) center and its association with unsafe sexual practices.
MATERIALS AND METHODS: This cross-sectional study was carried out among WLHIV attending an ART center of a tertiary care hospital after obtaining approval from the institutional ethics committee. An interview schedule was used to collect data from WLHIV selected by systematic random sampling method on the day of interview. Data were collected after taking their written informed consent using a semistructured validated study instrument. Stigma and discrimination was assessed by a set of 7 and 11 closed-ended dichotomous-response questions, respectively. We measured self-reported occurrence of domestic violence and unsafe sexual practice.
RESULTS: A total of 135 WLHIV were enrolled in this study. As high as 81% perceived stigma in their daily life while 41% reported to be discriminated. Domestic violence was experienced by 50.3% of the respondents. Majority of them (three-fourths) reported the type of violence to be physical as opposed to a quarter reporting sexual violence. Stigma, discrimination, and domestic violence were significantly associated with unsafe sexual practices.
CONCLUSION: Social evils in the form of stigma, discrimination, and domestic violence are still faced by a remarkable proportion of WLHIV, and it has been found to be associated with unsafe sexual practices. Copyright:

INTRODUCTION

The Joint United Nations Programme on HIV/AIDS (UNAIDS) has envisioned three goals for “getting to zero” strategy globally which includes zero new infections, zero AIDS-related deaths, and zero discrimination.[1] This goal at zero discrimination as envisaged in the UNAIDS 2011–2015 strategy is not yet achieved and hence we continue to have this goal of zero discrimination for the UNAIDS 2016–2021 strategy also.[2] Hence, it becomes important to assess the proportion of stigma and discrimination as baseline data at country level to achieve “zero discrimination” as one of the goals to end this HIV epidemic.

In India, HIV/AIDS continues to be one of the major public health problems, with an estimated adult prevalence of 0.26%.[3] As reported by UNAIDS, HIV has been perceived as the disease due to “sinful” act among certain Indian communities.[4] Hence, the disease is highly associated with social evils in the form of stigma and discrimination. Some of the qualitative studies have shown that HIV/AIDS-related stigma leads to increase in the existing class prejudices and inequities in gender and sexualities.[56] In Indian sociocultural setting where gender gap exists and women enjoy less autonomy, HIV when affecting woman is more likely to attract stigma and discrimination. Stigma and discrimination is experienced by women living with HIV (WLHIV) at various levels such as family, community, or institutional levels such as workplace, school, or health-care settings.[4] There has been growing evidence that stigma and discrimination has also lead to increase in risky sexual practices such as nonusage of condom.[78]

In India, many qualitative studies have been conducted to identify the issues of stigma, discrimination, and domestic violence among WLHIV.[9] However, still there has been a paucity of data from quantitative angle for these social issues among WLHIV. There is a need for representative data coming from WLHIV to assess the proportion of WLHIV experiencing stigma and discrimination. A study using quantitative means can bring out the quantum of the problem. Hence, this study was conducted with an objective to assess the proportion of stigma, discrimination, and domestic violence among WLHIV attending an antiretroviral therapy (ART) center of a tertiary care hospital in Gujarat, Western India. We also assessed the association of stigma, discrimination, and domestic violence with unsafe sexual practices. Such data can further help at programmatic level to make important policy changes addressing these social issues to achieve “zero discrimination.”

MATERIALS AND METHODS

Ethical considerations

The study was conducted after obtaining approval from the Institutional Ethics Committee (IECHR/MCB–16A/2010–2012). All the study participants were interviewed after obtaining written informed consent and they were free to withdraw at any point of time. During data collection phase, the interviews were conducted in separate rooms having visual and auditory privacy. Data confidentiality was maintained by keeping password-protected data entry files with restricted access to the researchers only.

Study design, study setting, and study participants

This cross-sectional study was conducted in a tertiary care hospital in Gujarat, Western India, over a period of 2 years. It was carried out among WLHIV attending an ART center (a separate outpatient department in hospital), where all the registered WLHIV are provided the ART drugs free of cost.

Sample size and sampling

Based on the available literature,[10] assuming the proportion of stigma among WLHIV as 25%, alpha error as 0.05 and beta as 0.2 to ensure 80% power of the study, and acceptable error of margin as 8%, the sample size calculated was 113 by the Epi Info software (Epi Info™, CDC, Atlanta, GA, USA). Assuming 15% nonresponse rate, the sample size determined was 135 participants. We consecutively interviewed women attending ART center to complete the sample size of 135 participants during the study period with an average of 2–3 WLHIV interviewed per day.

The sample size was calculated for the primary study objective which was descriptive. For the analysis that we performed for assessing the significance of difference in proportion of WLHIV engaging in unsafe sex between stigmatized and nonstigmatized WLHIV, we could achieve the power of 0.88.

Study tools

A pretested, validated, semistructured questionnaire was used to interview the study participants after taking written informed consent. It included questions related to basic sociodemographic details, their sexual practices, stigma, discrimination, and domestic violence.

Definition of study variables

Stigma and discrimination was assessed by a validated questionnaire tool consisting of 7 and 11 closed-ended dichotomous–response questions, respectively [Figure 1]. Positive response was coded as one and negative as zero. Each respondent's score was summed and those scoring above mean were considered as “stigmatized” and “discriminated.”[11]

Figure 1

Discrimination experienced by women living with HIV attending an antiretroviral therapy center in a tertiary care hospital in Gujarat, Western India (n = 135)

We used the United Nations General Assembly standard definition of domestic violence as “any act of gender-based violence that results in, or is likely to result in, physical, sexual or psychological harm or suffering to women, including threats of such acts, coercion or arbitrary deprivation of liberty, whether occurring in public or in private life.”[12] We measured self-reported occurrence of domestic violence in sexual and physical categories.

Unsafe sexual practice was defined as incorrect and inconsistent use of condom during sexual activity in the last 3 months. Unsafe sex was measured as a dichotomous variable, based on whether condoms were used 100% of the time during the 3 months' period preceding data collection (defined as “consistent condom use” or “safe sex”) or not (defined as “inconsistent condom use” or “unsafe sex”).

Data management and analysis

Data were entered in Epi Info Software version 6.04 with appropriate checks to ensure quality assured data entry and then were analyzed using the same software.[13] Descriptive statistics was presented using averages and proportions. Chi-square test was applied to find the association between stigma, discrimination, and unsafe sexual practice. P <0.05 was considered statistically significant.

RESULTS

Sociodemographic profile of women living with HIV

The mean age of the study participants was 31.5 years. Majority (69.5%) were married and almost 84% were literate. The average monthly family income was INR 3475 [Table 1].

Table 1

Sociodemographic profile of women living with HIV attending an antiretroviral therapy center in a tertiary care hospital in Gujarat, Western India (n=135)

Variables	Frequency (%)
Mean age (years), range	31.5, 21-50
Marital status
Single	9 (6.8)
Married	94 (69.5)
Divorced	8 (6.2)
Widowed	19 (13.8)
Separated	5 (3.7)
Residence
Urban	78 (57.6)
Rural	48 (35.8)
Tribal	9 (6.6)
Education
Illiterate	21 (15.9)
Primary	37 (27.1)
Secondary	48 (35.5)
Higher secondary	18 (13.4)
Graduates and above	11 (8.1)
Occupation
Employed	35 (25.7)
Unemployed	100 (74.3)
Religion
Hindu	124 (91.6)
Muslim	10 (7.8)
Christian	1 (0.6)
Average monthly family income (INR*)	3475
Median ^ (IQR) weeks elapsed since HIV diagnosis	18 (10-36)

*INR: Indian Rupees. ^ IQR: Interquartile range

Experience of stigma, discrimination, and domestic violence among women living with HIV

The proportion of WLHIV who perceived stigma was 81.6% (95% confidence interval [CI]: 75.6%–88.1%). Out of 135 WLHIV, 41.5% (95% CI: 33.2%–49.8%) felt that they were discriminated and 50.3% (95% CI: 41.9%–58.7%) experienced domestic violence [Table 2]. Out of 68 WLHIV who experienced domestic violence, third-fourth (74%) of them reported physical violence whereas one-fourth (26%) of them reported intimate partner sexual violence. In response to stigma perception, majority feared rejection by their family (83.5%) followed by fear of losing friends (76.9%) [Figure 2]. However, with regard to experience of discrimination, family rejection (17.3%), shifting of their home (8.5%), and divorce from spouse (5.4%) were the common responses [Figure 1].

Table 2

Relationship of stigma, discrimination, and domestic violence with unsafe sex among women living with HIV attending an antiretroviral therapy center in a tertiary care hospital in Gujarat, Western India (n=135)

Characteristics	Safe sex (n=50; 37%)	Unsafe sex (n=85; 63%)	Total (n=135), n (%)	χ2 (P)
Perceived stigma
Stigmatizing	39 (33.3)	78 (66.7)	117 (81.6)	4.03 (0.04)*
Not stigmatizing	11 (61.1)	7 (38.9)	18 (18.4)
Enacted stigma (discrimination)
Discriminated	7 (12.5)	49 (87.5)	56 (41.5)	22.9 (<0.0001)*
Not discriminated	43 (54.4)	36 (45.6)	79 (58.5)
Experience of domestic violence
Yes	10 (14.7)	58 (85.3)	68 (50.3)	27.4 (<0.0001)*
No	40 (59.7)	27 (40.3)	67 (49.7)

*Statistically significant, Figures in bracket of total are column percentage while rest are row percentage

Figure 2

Stigma perceived among women living with HIV attending an antiretroviral therapy center in a tertiary care hospital in Gujarat, Western India (n = 135)

Association of stigma, discrimination, and domestic violence with unsafe sex

Unsafe sexual practice was found to be higher among people who perceived stigma and who were discriminated as compared to those who did not perceive stigma and not discriminated and this difference was statistically significant. Unsafe sex was as high as 85.3% among those who experienced domestic violence compared to 40% with those who did not experience and this difference was found to be statistically significant as shown in Table 2.

DISCUSSION

In order to achieve one of the goals “zero discrimination against people living with HIV” as part of strategy laid down by UNAIDS, it is utmost necessary to have baseline data regarding stigma and discrimination experienced by WLHIV. Our study documented as high as 81.6% WLHIV experiencing stigma and 41.5% experiencing discrimination. Discrimination, stigmatization, and denial are the expected social outcomes among WLHIV which not only affects their life at family and community level but also at workplaces, schools, and health-care settings.[9] In our study, stigma was perceived mainly at the family level and community level like fear of family rejection and fear of losing friends while very few (3.5%) perceived at level of health care settings in the form of feeling of bad behaviour by the health care staff. Similarly, with regard to discrimination, majority of the participants experienced it at family level and community level such as experiences of rejection by their family, divorce from their spouse, forced to shift their homes. However, very few WLHIV felt being insulted in front of someone or experienced bad behavior by health-care staff. On an average, our study reports that almost 80% of WLHIV perceived stigma and as high as 40% of them were discriminated. This finding is in line with a study conducted by Chellan et al. in Tamil Nadu where 60% perceived stigma and discrimination among WLHIV.[14]

It is important to understand this finding in light of the Indian culture where family is a primary social unit and a person's social life is largely concentrated around family. In light of these findings, the National AIDS Control Program can explore possibility of expanding counseling service to include not only the partner/spouse but also the family members of the WLHIV. This can possibly build family capacity to reduce stigma and discrimination at family level. The discrimination at the immediate neighborhood and other places calls for increased awareness among general public about HIV. In light of the discriminatory acts like WLHIV being forced to shift their homes, it would be important to provide legal support to such affected individuals.

Domestic violence is prevalent in many countries and different socioeconomic and cultural population including India.[1516] India is considered as male dominant society and it is considered that women are adopted to tolerate and even accept domestic violence by remaining silent.

A recent Indian National Family Health Survey reported that overall 35% of women aged 15–49 have experienced physical or sexual violence at any time in their life.[17]

Over the past two decades, two significant public health concerns have begun to draw increasing attention in India: the continued presence of HIV and high levels of domestic violence.[1017] Hence, in this context, it becomes important to understand the relation between HIV and domestic violence so that the appropriate interventions to reduce HIV prevalence can also target to reduce domestic violence.[18]

However, empirical data on the effect of violence on women's ability to insist on mutual monogamy or to refuse sex with a nonmonogamous husband are scarce. At a broader level, few studies have examined the relationship between the sociocultural environment that fosters domestic violence and its impact on women's risk for HIV and other STDs.[1920]

Hence, in this study, we tried to find out the experience of domestic violence among WLHIV. Domestic violence was experienced by half (50%) of the respondents in our study. Among those who experienced domestic violence, nearly three quarters came across physical violence (like beating). Patrikar et al. also report high rates of domestic violence among HIV positive women. The study reports around 56% of HIV-positive women going through domestic violence as compared to 33.3% of HIV-negative women.[21] Further, a study by Chandrasekaran et al. among HIV counseling and testing center clients on domestic violence showed 42% of respondents reporting domestic violence, including physical abuse (29%), psychological abuse (69%), and sexual abuse (1%).[22] Even other countries have also reported high rates of domestic violence among WLHIV. A study by Iliyasu et al. in Nigeria reported 22% of WLHIV experienced domestic violence and among them 30% experienced physical violence but none of them experienced sexual assault.[23] In the United States, a WHO study found that 20.5% of WLHIV reported physical abuse because of their status, and in Kenya, 19% of women reported partner violence because of their HIV status.[2425]

In light of the high proportion of domestic violence among WLHIV, it is important to make them aware about the fact that domestic violence should be reported and help is available. The counselng offered under the National AIDS Control Program also needs to focus on the issue of domestic violence. Therefore, this contact opportunity can be utilized for reporting and counseling of the affected WLHIV.

In the Indian sociocultural setting where females enjoy less autonomy, being a female and having HIV is like a dual burden. In light of these findings, it becomes important that the HIV care providers especially counselors are made aware of this reality.[26] The HIV counseling services should be made gender sensitive so that the special needs of WLHIV are recognized at the first place and addressed. Once again, since much of the stigma and discrimination occurs at family level, it is important to explore the family counselng centered on this issue also.

This study found that unsafe sex was significantly higher among those WLHIV who experienced discrimination. Similarly, some studies have shown significant association of discrimination with unsafe sex among WLHIV.[78] Moreover, unsafe sex was found to be significantly higher among those who perceived stigma and experienced domestic violence. Earlier studies have also shown association of stigma and domestic violence with unsafe sex.[192728]

There are some limitations in this study. Being a cross-sectional study, we could not establish any causal relationships. Study participants were selected from one tertiary care hospital so does not necessarily represent WLHIV of the entire community. However, the strengths of this study are as follows: a focused research enquiry with clearly defined variables, sufficiently large sample size, use of validated and culturally acceptable self-reported tools to assess the outcome variables, and robust data management to check for data entry errors. The study has tried to assess the relationship of stigma, discrimination, and domestic violence with unsafe sexual practices among WLHIV, which is the first study from Gujarat State in the western region of India.

CONCLUSION

Stigma, discrimination, and domestic violence were experienced by 81.6%, 41.5%, and 50.3% of WLHIV, respectively, in our study. Stigma was more perceived at family and community level. Unsafe sex was found more among those who experienced stigma, discrimination, and domestic violence.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.