In India, where culture and religion are central, the stigma of disease adds an extra burden to families and individuals with HIV, according to Nalini Tarakeshwar. Tarakeshwar, a postdoctoral fellow at Yale University School of Medicine, is pursuing two projects in southern India. The first takes an in-depth look at the role of religion and culture in the behavior of HIV-positive people receiving treatment. Tarakeshwar's second project examines the psychosocial impact of HIV/AIDS treatment on families.
Tarakeshwar is interested in the role that religion plays in the global HIV epidemic. She focuses her studies in India, where more than 5 million people are HIV-positive, according to the World Health Organization. Before Tarakeshwar left for another research trip to India this summer, she took the time to talk to Science & Theology News' Science Editor Julia C. Keller about the intersection of India's religion, culture and HIV-positive population.
How did you become interested in studying how religion, culture, and disease intersect?
Before coming to the United States, I had worked as a special-education teacher for children with mental retardation. Parents of these children, although quite informed about biomedical explanations for their children's condition, almost always attributed the ultimate cause of their situation to a higher power or to sins they had committed in this life or presumably their previous life, or karma. Anecdotally, I found that this attribution was associated with both positive emotions--life satisfaction, hope--as well as negative emotions, like anger.
Why did you want to focus on HIV/AIDS, and specifically in India?
In my pilot research in India, I found that most infected individuals are religious, and their religious beliefs provide them the motivation to persevere in the face of numerous calamities. Duty toward family is another element that keeps patients coming for treatment. Finally, HIV forces us to consider gender roles and expectations within society, another topic that is of interest to me.
What is the current climate for HIV-positive individuals in India?
Since AIDS was first diagnosed in a female sex worker in 1986, much improvement in HIV/AIDS awareness and related services can be discerned, particularly in the urban areas and within the non-government organization, or NGO, sector. Over the last few years, the Indian government has demonstrated better commitment by increasing the number of HIV-related programs (including antiretroviral treatment) offered through its government hospitals, which the poor and those from rural areas can better access. However, the greatest obstacle is the stigma that is attributed to HIV disease, which is associated with "immoral" sexual behavior.
But the negative impact of stigma is greater for women than men. The wives who are infected through their husbands (who visit sex workers) and subsequently transmit the virus to their children are usually blamed for their husband's illness. Wives often worry about impending widowhood, which is associated with an inferior social status and limited financial resources. In a patriarchal society such as India, HIV-infected men are usually taken care of by their wives and/or their families. The female sex workers are perhaps stigmatized even more. The health providers find it much easier to empathize with the "innocent" housewives, but the already existing stigma of sex work makes it challenging for them to feel for the sex workers.
Overall, if you are HIV-positive, you are better off living in an urban area and if you can afford to pay for care received at an NGO. Unfortunately, HIV affects the socially disadvantaged the greatest, many of whom live in rural areas. For these individuals, HIV may just be one of a host of challenges that could include rent, food, school fees and so on.
In India, what is the biggest challenge to addressing cultural or religious issues in HIV prevention?
Over 80 percent of Indians are Hindus. Unlike churches, Hindu temples or priests do not offer health services or discuss "personal" problems. Most prefer to think of Hinduism as something more personal and that has nothing to do with HIV. Hence, in India, I believe issues of religion and culture have to be integrated within the patient-care system that HIV-infected or affected populations are likely to access. There are a number of spiritual leaders of different Hindu sects who wield significant social and political influence, but this collective force has not been tapped to spread messages about HIV.
"The fact that they are alive is due to God's desire to keep them alive."
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It is terribly important to integrate good mental health care with good physical health care. For instance, research in the United States has shown that depression can significantly influence HIV-related mortality and treatment adherence. In my opinion, this is one of the challenges of working in India, where mental-health care is not given due importance.
Through my work, I have recognized that mental-health care, if addressed, is usually done by HIV counselors and social workers. This involves education, pre- and post-test counseling, adherence counseling and so on. These counselors work hard to motivate their clients. But structured programs and services are not available that specifically address mental-health problems such as depression, anxiety and so on. Unfortunately, mental health in India is associated with psychiatric disorders such as schizophrenia, which are also highly stigmatized.
How have religious communities responded to people with HIV?
In my interviews with HIV-infected individuals and families, I have learned of local churches supporting HIV-infected and affected individuals and their communities through prayers, food, and providing shelter. It is not clear how many of these individuals had informed the churches of their HIV status. Religious communities have not been very active in India but I do think they can be mobilized to raise greater awareness about HIV and compassion for affected families.
From your studies, what role does religion or spirituality play in the lives of HIV-positive people?
As with so many other tragedies and misfortunes that befall human beings, the main role of religion in the lives of HIV-positive people seems to be as a source of strength, guidance, and hope.
Religious beliefs often help individuals develop a perspective on the meaning and purpose of their life with HIV infection. This does not mean that people are always pleased with what they perceive to be their lot in life--they often express feelings of anger at God. But for most individuals with HIV, the fact that they are alive is due to God's desire to keep them alive.
What is secondary HIV prevention and how might religious or culturally sensitive interventions help prevent transmission?
As HIV treatment becomes increasingly available and accessible, HIV-infected individuals in India will live longer lives. Interventions that enhance the physical and mental health of these individuals and reduce their risk of HIV transmission are referred to as secondary HIV prevention.
In serving as a source of strength, guidance, hope, and meaning in life, religious and culturally sensitive interventions can play an important role in improving the mental health of these individuals, which can thereby influence their physical health. A few religious practices, such as meditation and yoga, have been found to have a direct influence on physical health as well, although I do not know of studies in India among HIV-positive individuals. Moreover, religion/culture is only a part of the picture--high quality treatment and family support are also essential. These three factors can bring greater life satisfaction, thus reducing opportunities for unsafe sexual practices and poor health behaviors like substance use.
What is the future of HIV in India in relation to religion and spirituality?
At the individual level, health providers need to be sensitized to the religious/cultural beliefs of their patients as it can have an influence on treatment and adherence. Change is harder at the community level. Several Christian missionaries--World Vision, Catholic Relief Services--are currently active in providing care and prevention services. Hindu organizations have yet to show initiative.
To begin with, I think we need to investigate their level of interest and commitment, and determine how we can garner their support. Stigma will be a significant barrier, and hence I believe we should be realistic about our expectations.
Ideally, I would be pleased if religious groups can become actively involved in providing or supporting services for HIV-affected families, such as education and health care for children from HIV-affected families.