In India, Stigma Of Mental Illness Hinders Treatment
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Anupam Nath/AP
Anupam Nath/AP
Second of two parts
In India, people with severe mental illnesses often turn to temples and shrines, not to doctors. Some social workers are trying to change this by focusing their efforts on India’s schools.
At a small rural high school in Goa, along the Arabian Sea, child psychologist Prachi Kandayparker is leading a workshop to train teachers to deal with mental health issues among their students.
The students here are poor, the children of miners and fishermen. They mostly speak the local language, Konkani.
Kandayparker has a bright, engaging manner that draws out a dozen male teachers she is training. Soon, despite the sapping heat and humidity, there’s a lively discussion in the room about how to deal with difficult teenagers.
One of the teachers starts describing a problem he’s having in class. A 17-year-old girl has been telling the other students that she is in love with him, he says. He worries about his reputation in this small town.
The girl also says she has a brain tumor and epilepsy. The teacher doesn’t know what to do.
“What is happening is she’s been referred to the counselor. We’ve decided we’ll do a little bit of groundwork, get to know her friends and family, and if need be, we’ll get a psychiatric evaluation,” Kandayparker says.
Seeking Family Consent
Taking her to a psychiatrist, of course, requires the consent of the girl’s family. Kandayparker, who grew up near here, says the family probably will not agree to it because of the stigma of mental illness.
Even though Kandayparker’s organization, Sangath, offers therapy and medication for free, finances are not the biggest obstacle to treatment.
General physicians were not aware of mental illness. Initially they would say, ‘Do some yoga and meditation.’
“Most of the time you would have parents or teachers saying it doesn’t happen here. It happens to somebody with a lot of problems, and we don’t face that. When it comes to anything of mental illness, it would be a big no-no … it would be hidden,” Kandayparker says.
The fact that the student is a girl further complicates the problem, Kandayparker says. Her parents will be even less willing to take action because it could scuttle her chances of marriage.
Word always gets out in India, where the most private of matters are considered public domain, says Rukmini Pillai, a middle-class housewife in the capital, New Delhi. It took her more than a year to fully realize that she should seek treatment for her 16-year-old daughter.
“She was not sleeping at all in the nights. If you gave her a cup of milk or something, she would just drop it. She got to the point where she would just sit on the bed. She couldn’t recognize her face. Then she would start crying at times and laughing at times,” Pillai says.
Pillai is educated and married to an officer in the Indian Air Force. Yet when her daughter’s school principal recommended that she take her to see a mental health professional, Pillai’s first thought was of the dishonor it would bring.
“I got so scared. Psychiatrist? What about the rest of her life? How will I get her married? I rang up my parents, but they said, ‘It’s your fault, you haven’t got her married. This comes with sexual frustration, this kind of behavior.’ So I stopped talking to my mother after that,” Pillai says.
Little Support For Mental Health Patients
That was 15 years ago, and the grandparents haven’t seen their granddaughter since. She was diagnosed with schizophrenia and dropped out of school. Pillai hasn’t had much help from other quarters, either, because there are few support groups or psychiatrists in India.
“General physicians were not aware of mental illness. Initially they would say, ‘Do some yoga and meditation.’ They would say, ‘You must not have given proper food diet to your child, that’s why she became ill,’ ” Pillai says.
Eventually Pillai began lobbying the Indian government to pay more attention to its mental health program, which she says is toothless and lacks sufficient money. India has largely succeeded in destigmatizing HIV and AIDS, she points out, but it hasn’t done the same for mental illness.
Pillai says she can only conclude that the government doesn’t consider it a priority.
Miranda Kennedy reported from India on a grant from the International Reporting Project.
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For a revolutionary, Deepali Vishwakarma is more quiet and reflective than you might expect. She’s in her 30s, small, with a round face that holds intense brown eyes and a shy grin.
Vishwakarma is a lay counselor in the state of Madhya Pradesh, India — a well-trained community member who goes out daily to fight what novelist William Styron once called a “howling tempest in the brain.”
She’s part of an effort by the Indian nonprofit group Sangath to provide mental health treatment to poor people in India and to show that people with much less training than a psychiatrist or psychologist can deliver effective care. Vishwakarma had 40 hours of training for her role as a counselor. So her counseling is definitely revolutionary. And some mental health observers wonder if it might work in the U.S.
But it’s a controversial approach. Critics say the use of lay counselors means that patients receive substandard care.
Tell that to Vishwakarma. In a typical week, she may meet with 25 people, and in her several years as a counselor, patients who’ve stuck with her, as most have, have done well. The patients have been diagnosed with serious depression (or stress or tension, as it’s more often called in India), or alcoholism, and every so often, someone with schizophrenia. She’s been trained to listen and to assign specific tasks to her patients. She might tell someone who’s feeling really low to go for a daily walk, or go out and play soccer, or work in the garden or listen to the radio. For depression, it means thinking about anything other than that paralyzing howling tempest. For schizophrenia, it means helping people, many of whom are on medication, adjust to living in society.
Vishwakarma’s biggest challenge is educating her patients. Worldwide, most people with depression don’t seek help, and Deepali’s patients are no different. “The people don’t know they have depression because they don’t understand what depression is,” she says. “They come in seeking help for not sleeping, not eating. We tell them no, when we cure your mental issues the symptoms go away. Then they accept treatment. To run this program, Sangath — that’s a Konkani word that means support or partnership — gets funding from the Wellcome Trust and other donors, And it’s not the only health care group trying this experiment. Several other countries, including Ethiopia, Nepal, South Africa and Uganda, are working on the lay counselor approach as well.
Thirty or 40 years ago, the U.S. was, too. Lay counselors were going to be the next big thing for depression treatment. There were lots of pilot programs, and medical journals carried the results of research trials.
Most of the old research showed that lay counselors were just as effective for depression as counselors with lots more education — sometimes even more effective. A 1979 review paper in Psychological Bulletin analyzed 42 papers and concluded so-called paraprofessionals got results “equal to or significantly better than those obtained by professionals.”
In a 1985 rebuttal in the same journal, the best the opponents could come up with was that professionals did just as well, but not better.
In India, the establishment of lay counselors was pioneered by psychiatrist Vikram Patel and colleagues at Sangath. The idea sprang from something Patel saw in Zimbabwe, where he worked as a psychiatrist in the mid-1990s. Community members were being trained to give care to people with AIDS. Patel figured that maybe the same approach could be used for people with mental illness.
Years into the project, someone at Sangath came across the U.S. research and told Patel about it. “It completely blew my mind,” says Patel. “There was an entire research enterprise.”
At first, Patel and his colleagues thought they were starting from scratch. They ran focus groups to gauge community acceptance and conducted small trials and then larger trials comparing lay counselors to “enhanced traditional care” — basically, diagnosis by a doctor or health worker at a primary health center, medication if necessary, and sympathy from the staff, but not ongoing counseling.
“I was very happy to get the first set of results,” Patel says. And the results got better and better. The medical journal Lancet has just published two large studies that confirm earlier research showing that lay counseling works and is cost-effective.
Lay counselors get paid on par with staff workers at charitable institutions — a little lower than they might get in private industry. Psychiatrists or psychologists periodically review the charts the counselors are taught to fill out, and check in on the patients.
Patel recalls being criticized at international meetings for advocating for substandard care. His standard reply: “We need to wake up.” Lay counselors are effective, he says, and they address the lack of mental health workers that is so common in poor parts of the world. But Derek Summerfield, a psychiatrist with the National Health Service who has published papers on violence and mental health, says that the symptoms displayed by the patients — like anxiety and unhappiness — are the result of poverty and cultural differences, not depression. In a debate with Patel at McGill University, he said “these are people who are struggling to find lunch for their children.” Patel’s response is that poor people can get depression just as rich people do, and they’re just as deserving of attention.
Lay counseling could not work, says Patel, without people like Vishwakarma. The lay counselors come from the same community as their patients. They speak the same dialect, and they identify with their patients.
The counselors start with at least a 10th grade education. Vishwakarma had been an ASHA, an accredited social worker. But she says she didn’t know anything about depression or schizophrenia before going to intensive four-week training.
Today, Patel says, the challenges are figuring out how to scale up the program, which is currently funded by the Wellcome Trust and other donors, and how to make sure that a larger-scale program will produce adequately trained counselors. “We’re no longer asking can we use community workers, we’re asking how do we deploy them,” says Patel.
Right now community counselors are available in two states in India, and more are likely to come online soon. The Indian Parliament is considering a plan that promises mental health care for all, using primary health clinics — and lay counselors.
That’s not the case in the U.S. What happened after that flurry of papers, says Patel, was that “suddenly the trail goes dry, and from the 1970s onward the literature dries up.”
Patel’s suspicion is that the professional community was threatened by the use of paraprofessionals with comparatively light training. He’s been careful in his work in India to avoid competing with psychiatrists and psychologists. Instead they do the initial diagnosis and help with the training program. The medical officer at Vishwakarma’s clinic says he very much appreciates the support of the lay counselors. “Before, we couldn’t treat these patients,” says Dr. Wilfred Mirand. “After the patients were successfully treated I became confident.”
The approach has American proponents such as Alan Kazdin, former head of the American Psychological Association. “Seventy percent of the people in this country who need psychiatric services receive nothing,” he says. That number comes from several studies, including two published in the Annual Review of Public Health and JAMA Internal Medicine. “The truth is that today, we are not treating everyone in need, and we cannot do so if we insist on one-to-one therapy, at a clinic, with a mental health professional.” Kazdin is an expert on parenting but has been interested in lay counselors as a way of expanding access to care for years.
So why no change? “There’s no incentive,” says Kazdin. “The individuals who suffer from mental illness are not the best lobbyists, and there’s no industry behind this.”
Terry Wilson, a psychology professor at Rutgers University, says it’s always challenging to introduce a culture shift. “The problem is professionals here are concerned or worried that lay counselors are not going to be able to provide the expert level of care that they’d want.”
But he thinks lay counselors could catch on here. “Change takes time,” he cautions.
Meanwhile, Vishwakarma soldiers on. Recently she took me to visit one of her patients, a woman who wasn’t sleeping or eating well. The woman had suddenly felt a sense of loss that she thought would somehow kill her.
Vishwakarma gave her homework. Every day pick a number from one to 10 that indicates her mood and write that number down. Read her “smile cards” — yellow cards with positive sayings. Take time to sing and listen to music. Sometimes her patient picks devotional songs; sometimes she opts for Bollywood tunes. Without Vishwakarma, the woman says, “I would have only worsened.”
The patient is still worried about finding money for school fees for her three young children. But she has found ways to cope with her worries. To show me, she takes out her cellphone and plays a devotional song. With her 7-year-old daughter at her side, she looks at Vishwakarma, hums along softly with the tune and smiles.
