|Year : 2020 | Volume
| Issue : 1 | Page : 4-10
Factors affecting disclosure of HIV-positive serostatus among people living with HIV/AIDS attending an antiretroviral therapy center of Eastern India
Rakesh Kumar1, Madhutandra Sarkar2, Alok Kumar3, Jaya Chakravarty4, Sangeeta Kansal5
1 Junior Resident, Department of Community Medicine, Institute of Medical Sciences, Banaras Hindu University, Varanasi, Uttar Pradesh, India
2 Medical Officer, Department of Community Medicine, Institute of Medical Sciences, Banaras Hindu University, Varanasi, Uttar Pradesh, India
3 Associate Professor, Department of Statistics, Banaras Hindu University, Varanasi, Uttar Pradesh, India
4 Professor and Head, Department of General Medicine, Institute of Medical Sciences, Banaras Hindu University, Varanasi, Uttar Pradesh, India
5 Professor and Head, Department of Community Medicine, Institute of Medical Sciences, Banaras Hindu University, Varanasi, Uttar Pradesh, India
|Date of Submission||12-Apr-2019|
|Date of Decision||14-Oct-2019|
|Date of Acceptance||06-Feb-2020|
|Date of Web Publication||16-Mar-2020|
C.64 Swastik Towers, Lanka Main Road (BHU), Varanasi - 221 005, Uttar Pradesh
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Background: HIV serostatus disclosure plays an important role in reducing the risk of HIV transmission. However, its negative effects may include rejection, assault, separation, divorce, stigma, and discrimination. Objectives: This study was undertaken to find out the proportion of HIV-positive serostatus disclosure to any family member and different factors influencing disclosure among people living with HIV/AIDS (PLWHA). Methods: A cross-sectional study was conducted among all patients aged 18–49 years with confirmed HIV infection registered at the antiretroviral therapy center of a tertiary care hospital in eastern part of Uttar Pradesh, India, for the duration of 1 year, from July 2017 to June 2018. Results: Most of the respondents were aged 30–49 years (79.9%), male (63.2%), married (85.4%), rural residents (60.4%), Hindu (96.5%), literate (84%), employed/driver (61.8%), and belonged to lower/lower middle class (62.6%). The rate of disclosure of HIV-positive status to any family member was quite high in this study (238/288 or 82.6%), among which 92.9% (221/238) to the spouse only. The number of sexual partners before disclosure, educational status, and socioeconomic status of the respondents were found to be independent predictors of disclosure of HIV-positive status to any family member (P < 0.05). Conclusions: This study indicates the need of giving more emphasis on creating awareness regarding the importance of HIV serostatus disclosure to any family member, especially to spouse, and encourage all PLWHA in the community to disclose their status. Effective strategies also need to be evolved that will target those not likely to disclose their status to anybody.
Keywords: Disclosure, factors, India, people living with HIV/AIDS, serostatus
|How to cite this article:|
Kumar R, Sarkar M, Kumar A, Chakravarty J, Kansal S. Factors affecting disclosure of HIV-positive serostatus among people living with HIV/AIDS attending an antiretroviral therapy center of Eastern India. Indian J Public Health 2020;64:4-10
|How to cite this URL:|
Kumar R, Sarkar M, Kumar A, Chakravarty J, Kansal S. Factors affecting disclosure of HIV-positive serostatus among people living with HIV/AIDS attending an antiretroviral therapy center of Eastern India. Indian J Public Health [serial online] 2020 [cited 2022 Oct 2];64:4-10. Available from: https://www.ijph.in/text.asp?2020/64/1/4/280765
| Introduction|| |
HIV/AIDS continues to be one of the major global public health concerns which has taken a toll on more than 35 million lives so far. India had around 21.40 lakh people living with HIV, with adult HIV (15–49 years) prevalence estimated at 0.22% (0.16–0.30) in 2017, constituting 0.25% (0.18–0.34) among males and 0.19% (0.14–0.25) among females. Approximately 87,580 new HIV infections and 69,110 AIDS-related deaths happened in 2017, while around 22,675 mothers needed antiretroviral therapy (ART) for the prevention of mother-to-child transmission of HIV.
HIV serostatus disclosure may have both positive and negative effects. It plays an important role in reducing the risk of HIV transmission. It has a positive association with adherence to ART and better treatment outcomes. It also provides timely access to care and treatment services in case the partner/spouse is also affected. Uninfected partners in discordant couples will benefit through taking appropriate actions including safer sex practices to prevent acquisition of HIV. However, negative effects of HIV serostatus disclosure may include rejection, assault, separation, divorce, stigma, and discrimination.,
It was estimated that only 75% of people with HIV knew their HIV status in 2017. Globally, 21.7 million people living with HIV were receiving ART in 2017. Effective antiretroviral drugs cannot cure HIV/AIDS, but can control the HIV virus and help prevent its transmission. These medicines help people with HIV and those at substantial risk to enjoy long, healthy, and productive lives. As the patients with HIV live longer due to effective treatment, serostatus disclosure has become an important issue. India has diverse cultures and religions, causing substantial differences in sexual behaviors, rate and patterns of HIV serostatus disclosure across the country. However, very few researches have been undertaken in the field of HIV serostatus disclosure in India, particularly in the eastern part of India. Moreover, the entire eastern part of Uttar Pradesh is a highly sensitive zone for HIV infections because of its migrant and mobile populations.
To help end the AIDS epidemic, the UNAIDS 90-90-90 treatment targets include, by 2020, 90% of all people living with HIV will know their HIV status, 90% of all people with diagnosed HIV infection will receive sustained ART, and 90% of all people receiving ART will have viral suppression. To achieve the above targets, it is imperative to know the disclosure status and the factors affecting disclosure among people living with HIV/AIDS (PLWHA). Therefore, the present study was undertaken to find out the proportion of HIV-positive serostatus disclosure to any family member and to identify the factors affecting disclosure among PLWHA.
| Materials and Methods|| |
This hospital-based, cross-sectional study was conducted over a period of 1 year, from July 2017 to June 2018, in the ART center of a tertiary care teaching hospital in Varanasi, Uttar Pradesh, India. This center is one of the ten centers of excellence in HIV care in the country and the only in Uttar Pradesh and Bihar where the facility for second- and third-line drugs is available. This center monitors the activity of 11 ART centers in Bihar, Uttar Pradesh, and Madhya Pradesh. Link ART centers are located in the neighboring districts of Ballia, Ghazipur, Jaunpur, Mau, Sonebhadra, Bhadohi, Chandauli, and Azamgarh. At the time of data collection, approximately 27,000 patients were registered with this ART center.
The study population consisted of all patients aged 18–49 years with confirmed HIV infection registered at the above-mentioned ART center. Usually, the patients attend the center every month after their registration with this center. The patients were included in this study on their first attendance after completion of 6 months of ART. According to the hospital records, on an average, twenty such patients attend the ART center each day. Patients who were severely ill were excluded from the study.
The proportion of HIV serostatus disclosure to at least one member in the family was considered as the key variable in the sample size determination. The sample size was determined by using the following formula: n = (p [1 − p] [z2])/e2, where p = proportion of HIV serostatus disclosure to at least one member in the family, z = 1.96 (z value at 5% level of significance), and e = 0.05 (margin of error). Considering the proportion of HIV serostatus disclosure to at least one member in the family as 78% (based on the pilot study conducted on 35 patients), the sample size was calculated to be 264. On adding 15% to account for contingencies such as nonresponse or recording error, the final sample size was found to be 303.
The number of days available for the data collection was 2 fixed days each week. Each day, around six patients were proposed to be selected for the interview during the 6-month period of data collection. The study participants were selected by random selection of the first patient and then every 3rd patient by using systematic random sampling technique. This process was continued until the required sample size was obtained.
Ethical clearance for performing this study was obtained from the Institutional Ethics Committee (Dean/2016-17/EC/747, dated
31.03.2017). All the eligible patients were informed about the purpose of the study, and were assured regarding the confidentiality of the information obtained. Written informed consent for participating in the study was obtained from all of them.
The eligible patients were interviewed face to face using a pretested, semi-structured, questionnaire-cum-case record form in a separate room considering the privacy of the respondent. Individual patient record maintained on the white card was also analyzed to elicit clinical information. The questionnaire-cum-case record form consisted of the following sections, i.e., sociodemographic information, disclosure status, sexual risk behaviors before and after disclosure, and, lastly, immunological profile and WHO clinical staging. The first question that was asked in order to elicit the disclosure status of the patients was whether they had disclosed their HIV serostatus to any member of the family. This question was followed by whether they had disclosed their HIV serostatus to their sexual partners (spouses).
The occupations of the patients were categorized as employed, unemployed, and driver. The drivers were identified as a separate category as they are considered to be a high-risk group, who play an important role in the spread of infection. The socioeconomic status of the patients was assessed according to the modified BG Prasad scale (2018). Staying away from home was defined for this study as staying away from home for certain purposes for a certain length of time and again returning home, but not continuously staying in the place of destination.
Statistical analysis by means of Chi-square test and multivariable logistic regression was employed using the trial version of SPSS (version 22.0, IBM Corp., Armonk, New York, United States).
| Results|| |
A total of 303 HIV/AIDS patients were interviewed in this study. After excluding 15 cases due to inaccurate, unreliable information, 288 patients were finally included in the analysis. The rate of HIV serostatus disclosure to at least one person in the family was found to be 82.6% (238/288), and most of them (221/238 or 92.9%) had disclosed to their spouses.
Among the sociodemographic characteristics, HIV serostatus disclosure to any family member was found to be associated with marital status and educational status of the respondents (P = 0.002 each). The proportions of the married respondents (84.6%) and the respondents in “others” category (separated, divorced, and widow/widower) (89.5%) were much higher than that (56.5%) of the unmarried respondents who had disclosed their HIV status. The rate of disclosure was found to be highest (93.5%) among illiterate respondents and lowest (64.1%) among those educated up to primary school [Table 1]. This table also shows that the proportion of the respondents who had disclosed their HIV-positive serostatus increased with the increasing duration of marriage.
|Table 1: Association between HIV serostatus disclosure to any member of the family and socio-demographic characteristics of the respondents (n=288)|
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Among the sexual risk behaviors, disclosure was found to be associated with the number of sexual partners of the respondents. Higher proportion (87.3%) of the respondents with single sexual partner had disclosed their HIV-positive serostatus in comparison to those with multiple sexual partners (76.4%) (P = 0.016) [Table 2].
|Table 2: Association between HIV serostatus disclosure to any member of the family and sexual risk behaviors of the respondents before disclosure (n=288)|
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Among the clinical and other characteristics of the respondents, disclosure was found to be associated with linkage to social welfare agencies. Higher proportion (93.6%) of the respondents with linkage to social welfare agencies had disclosed their HIV-positive serostatus as compared to those (80.5%) who had no such linkage (P = 0.03) [Table 3].
|Table 3: Association between HIV serostatus disclosure to any member of the family and clinical and other characteristics of the respondents (n=288)|
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[Table 4] depicts the results of logistic regression analysis for predicting the likelihood of disclosure of HIV serostatus to any member of the family. The clinical variables were taken in Model-1. It was found that the respondents who were in clinical Stage III or IV were 32% less likely to disclose their HIV serostatus than those who were in clinical Stage I or II (adjusted odds ratio [AOR] = 0.68, 95% confidence interval [CI] = 0.34–1.38, i.e., a 32% decrease in odds of disclosure). Hence, Model-2 displayed the odds ratios adjusted with the sexual risk behaviors of the respondents. The variable that was found to be statistically significantly associated with disclosure among the respondents was number of sexual partners before disclosure (less likely to disclose those with more than one partner, AOR = 0.48, 95% CI = 0.25–0.91, P = 0.025). After adjusting the clinical characteristics and the sexual risk behaviors of the respondents with their sociodemographic characteristics in the final Model-3, there were no major changes in the odds ratios for the clinical and the sexual risk behavior categories. However, the sociodemographic variables that were found to be statistically significantly associated with disclosure among the respondents were educational status (less likely to disclose those educated up to primary level, AOR = 0.09, 95% CI = 0.01–0.51, P = 0.006) and socioeconomic status (more likely to disclose those belonged to middle class, AOR = 4.48, 95% CI = 1.17–17.10, P = 0.028).
|Table 4: Logistic regression models predicting disclosure of HIV-positive status to any member of the family among the respondents (n=288)|
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| Discussion|| |
This study is an attempt to find out the factors associated with HIV-positive serostatus disclosure among PLWHA to any member of the family.
In the present study, 82.6% (238/288) of the respondents had disclosed their HIV serostatus to at least one person in the family. One Ethiopian study had reported slightly lower disclosure rate (73.1%) to at least one of the family members. Another Indian study had found slightly higher rate of disclosure (91.9%) to at least one person. Different African studies had reported the disclosure rate to at least one person, which varied from 80.1% to 93.3%.,, The difference in disclosure rates in different studies may be due to the differences in the population studied and sociocultural contexts of different regions.
In this study, 76.7% (221/288) of the respondents had disclosed HIV-positive serostatus to their spouses. Other Indian studies had found almost similar rates of disclosure to the sexual partners or spouses., Different African studies had reported varied rates of disclosure, ranging from 25.4% to 93.1%, to the sexual partners or spouses.,,,, The above differences in the results across different studies can be attributed to stigma, illiteracy, and fear of separation from the spouses or sexual partners prevailing in different study areas. In areas where stigma and discrimination are high, the rate of disclosure is expected to be lower because people do not find any reason to disclose.
The high disclosure rate found in our study can be attributed to the fact that, being a center of excellence, this center provides quality services with its well-trained and skilled staff, and the majority of the patients registered with this center are referred cases.
The present study and other studies, had observed that higher proportion of the respondents aged 30 years and above had disclosed their serostatus in comparison to those aged below 30 years. This can be attributed to maturity, sense of responsibility, and commitment of the older people aged 30 years and above, possibly due to longer duration of their relationship.
The finding of this study that similar proportions of male (82.4%) and female (83%) respondents had disclosed their HIV serostatus is closely commensurate with the findings of two African studies., However, few other studies,, had reported contradictory findings concerning gender and HIV serostatus disclosure. The differences in the findings across different studies may be due to the different levels of intimacy and independence in a relationship, male dominancy, and female empowerment in different regions.
A statistically significant association was found between HIV serostatus disclosure and the marital status of the respondents in the present study (P = 0.002). This finding is in agreement with that of three Nigerian studies,, and one study from Ethiopia. Another Indian study had also found higher rate of disclosure among married respondents. This observation may be due to their sense of responsibility and high level of commitment to the marriage.
In this study, the proportion of the respondents who had disclosed their HIV-positive serostatus increased with the increasing duration of marriage. Other studies, had also shown that most of the respondents who had disclosed their HIV serostatus were in a relationship of longer duration (>5 years). The reason behind this finding may be their sense of responsibility and high level of commitment to the marriage due to a trusting, intimate, and long-term relationship, which favors disclosure.
HIV serostatus disclosure was not found to be associated with the residence of the respondents in the present study and another Indian study. However, it was found that higher proportion of the rural respondents had disclosed their HIV-positive serostatus as compared to their urban counterparts (85.6% vs. 78.1%), which is in contrast to a Nigerian study. The difference in the results across different studies may be due to the difference in the knowledge about the importance of disclosure among rural and urban populations of different geographical areas.
The finding of the present study that HIV serostatus disclosure was not associated with condom use during sex before the disclosure of status is commensurate with that of Lee et al. However, Adefemi et al. found a relation between lack of disclosure and low condom use.
In this study, no statistically significant association was observed between HIV status disclosure and sex under the influence of alcohol (P = 0.248). However, Lee et al. found a significant association between disclosure and sex under the influence of drugs or alcohol.
In the present study, HIV serostatus disclosure to any member of the family was not found to be associated with the WHO clinical stage (P = 0.271), although higher proportion (84%) of the respondents in clinical Stage I or II had disclosed their status in comparison to those in Stage III or IV (78.3%). This is in contrast to the findings of other studies., This difference in findings across different studies may be due to the differences in study setting, population sampled, and health care-seeking behavior of the population in different places.
This study and other studies, had reported that HIV serostatus disclosure was associated with linkage to social welfare agencies or support groups. Alema et al. commented that those who were a member of anti-HIV/AIDS association had frequent discussion related to HIV, and they felt free to bring behavioral changes and disclosed their status.
After controlling multiple confounding factors by using multivariable logistic regression, variables that were independently associated with disclosure of HIV-positive status to any family member were identified. The results showed that the respondents who had more than one sexual partner before disclosure were statistically significantly (P = 0.025) less likely to disclose their HIV serostatus to any of their family members as compared to those who had single partner. Amoran supports this finding. The above finding can possibly be due to the reason that those in monogamous relationship are more responsible and committed to their relationship than those who are polygamous. This can also be attributed to stigma and fear of separation from the partners. However, this can have serious implication in increasing transmission of infection as it spreads the infection among multiple partners if condoms are not used. The respondents who were found to be educated up to primary level were statistically significantly (P = 0.006) less likely to disclose their HIV serostatus to any of the family members as compared to those who were illiterates. This observation closely corroborates with that of Erku et al. In contrast to that, another study had reported that those with higher level of education were significantly more likely to disclose their status than the illiterates. In the present study, a large number of illiterate respondents were accompanied by their family members in the hospital for the treatment. The reason may be that a supportive family with open and effective communication among family members gives strength and courage to disclose HIV status, although the respondents were illiterate. The results also showed that the respondents who belonged to middle class were statistically significantly (P = 0.028) more likely to disclose their HIV status to any member of the family as compared to those in the lower socioeconomic class. This is possibly due to their higher level of education and awareness regarding the importance of disclosure than those in the lower class.
This study has the following limitations. First, the sample studied may not be the representative of the whole population, as the study was conducted among the ART service users in a selected tertiary health-care facility situated in eastern part of Uttar Pradesh. Sexual behavior may differ substantially across India which has diverse cultures and religions. Second, the study was based on self-report of the respondents, and is therefore subject to reporting bias. This might underestimate the disclosure rate. Third, the possibility of social desirability bias cannot be totally eliminated as this study touched upon many sensitive issues. Fourth, the study was a quantitative one. It would have been better to incorporate qualitative research methods to gather more in-depth information on certain issues.
| Conclusions|| |
The findings of this study indicate the need of giving more emphasis on creating awareness regarding the importance of HIV serostatus disclosure to any family member, especially to spouse, and encourage all PLWHA in the community to disclose their HIV-positive serostatus. Although the rate of disclosure of HIV-positive status to any family member was quite high in this study (more than 80%), effective strategies also need to be evolved that will target those not likely to disclose their status to anybody. The above measures will help achieve the UNAIDS 90-90-90 targets.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4]