Yale researcher investigates religion’s role in Indian HIV crisis

[Guest guest]

Yale researcher investigates religion's role in Indian HIV crisis. Nalini

Tarakeshwar is pursuing research in India that looks at the

intersection of religion, culture and people with HIV/AIDS.

By C. Keller

(August 3, 2005)

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 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 are the current interventions in stemming the transmission of

HIV in India?

India's National AIDS Control Organization (NACO) supports a

number of interventions, such as Preventing Mother-to-Child

Transmission (PMTCT), Targeted Interventions for high-risk groups

(commercial sex workers, injection drug users, truck drivers), and

establishment of Voluntary Counseling and Testing Centers (VCTC), to

name a few. Over the next few years, through support from the Global

Fund, the Clinton Foundation, and other bilateral donors, the Indian

Government will be increasing the capacity of 25 government

hospitals to provide HIV-related care. The AVAHAN initiative funded

by the Bill and Melinda Gates Foundation is a 5-year $200 million

investment towards HIV prevention efforts in the six high prevalence

states (Maharashtra, Tamil Nadu, Andhra Pradesh, Karnataka, Manipur,

and Nagaland). In addition, the USAID and other organizations are

carrying out HIV prevention work with several NGOs and quasi-

government organizations.

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.

In the HIV-positive population, how important is good mental health

in conjunction with good physical health care?

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.

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