So you might remember–and if you don’t, welcome to my world–a post I recently did called “Schizophrenic? Consider life in Ibadan.” To save pursuing the link, I’ll tell you how it turned out. Despite the fact that ‘developed’ countries have it all over ‘developing’ ones in terms of access to psychotropic medications for schizophrenics–and the newest medications, at that–better hospitals, many more long-term care facilities (most of the poorer countries looked at had about none), and significantly more psychiatrists (in fact, half of all countries have no more than 1 psychiatrist for every 100,000 people)–still and all, schizophrenics in the poorer countries consistently did better, over both the short- and the long-term, than those in Western countries.
The findings were so shocking that when the data from the first study–run by the World Health Organization–came in–researchers decided they’d better run that study again. And when they did, there it was again–schizophrenics in developing countries just do better. So what gives?
For years now, researchers have known that how well a schizophrenic does is intricately connected to the behavior of those closest to them. Particularly relevant to the patient is what is called “expressed emotion”–which is trendy enough that it’s got its own acronym, EE. EE, which includes yelling, fighting, hostile comments to the schizophrenic, is one of the major predictors of relapse in the course of schizophrenia.
No doubt an interesting fact–and one that might get you somewhere in Jeopardy–but you may be thinking, weren’t we talking about schizophrenics in Timbuktu?
Yes–and things start to come together with a study quoted by the New York Times in January, 2010. Researchers found that 67% of white American families with a schizophrenic family member were rated as “high EE.” The Brits did better–much better, actually–at 48%, but once we enter the developing world, the numbers drop further, with high EE among Mexican families 41%–and 21% for Indian families. (India, you may–or may not–recall, was one of the original sites for the WHO study; Indian schizophrenics in general did significantly better than their Western counterparts.)
Let’s think back for a moment to the original WHO study, phase two. At that time, 1978, things were a wee bit different for the mentally ill in Chandigarh than they were in, say, the UK, or the US. A local psychiatrist by the name of Naren Wig had just begun a psychiatry department–the very first–in Chandigarh.
But money was a little tight.
So tight, in fact, that funding for nurses just wasn’t on the table. So. . .with nowhere else to turn, Wig asked families to stay with and watch the patients–24 hours a day.
And everyone liked the results so much, that to this day, relatives are nurses in the psych ward at Chandigarh hospital.
R. Thara Srinivasan, the psychiatrist who heads a nonprofit treatment facility called the Schizophrenia Research Foundation (SCARF) in Chennai has no doubt about it: Families are the reason Indian patients have better outcomes.
Researchers Leff, et. al., ran a study on that hospital: “Expressed emotion and schizophrenia in north India. III. Influence of relatives’ expressed emotion on the course of schizophrenia in Chandigarh.” They made initial contact with cohorts of schizophrenics–and their family members–from Chandigarh, North India, and London. At a one-year follow-up, after running the statistics, they came to the conclusion that the “significantly better outcome” of the Chandigarh patients compared to the London sample was “largely due to the significantly lower proportion of high-EE relatives in the North Indian sample.”
This type of family support consistently appears as the reason that schizophrenics in other developing countries, too, do better in a number of ways.
As recently as 2012 Rangaswamy published a 25-year follow-up to the Madras Longitudinal study, which studied 90 first-episode schizophrenic patients.
Of the 47 he could track down from the original study, once again rates of ‘success’ were high: 32 were in partial or total remission, 20 were not on medication, feeling they no longer needed it, 30 were employed–and nearly 32% supported themselves financially. Only five were ‘ill’ throughout the 25 year period.
How could that picture look so–relatively–rosy, considering the severity of the original diagnosis?
Concludes Rangaswamy, “the fact that all but two of the patients live with their families even at the end of 25 years of a chronic illness and are supported by them is indeed heartening and speaks volumes of the resilience in Indian families.”
Further, Kurihara et al (2000) studied 59 Balinese schizophrenics admitted for their first mental health admissions to Bangli State Mental Hospital between 1/1/90 and 4/30/91, and 46 schizophrenics from Tokyo admitted–also for the first time–to Komagino Hospital in Tokyo between 1/1/91-6/30/91. The researchers evaluated patients using five outcome measures, which would be familiar to anyone in the field, but would probably cause everyone else’s eyes to glaze over, so let’s just leave it that they assessed for delusions, social adjustment, length of hospital stay–that sort of thing.
After the initial evaluation, researchers did a 5-year follow-up study. They actually did not find that the Balinese subjects were any better or healthier than their Tokyo counterparts; however, the schizophrenics in Bali were much more able to live in society with a reasonable degree of success than their counterparts, and–most interesting–they did so without any antipsychotic medication. Additionally, the mean time spent in the hospital by the schizophrenics in Bali was approximately a fifth compared with schizophrenics in Tokyo (Kurihara et al, 2000).
Researchers believe one of the key reasons that the subjects in Bali could function in society despite shorter hospital stays than those in Tokyo is “the stable extended family structure and community system.” They point out that, in Bali, the average number of family members cohabiting under the same roof–and this isn’t the Gold Coast or anything–was 4.69–BUT there were more than 10 relatives living in the same compound.
The more family members, the easier it is to share the burden of care, the less likely one caregiver will become overwhelmed and either escalate levels of EE or think escorting the sick relative to the hospital is a fine idea.
Finally, in “A 16-year follow-up study of schizophrenia and related disorders in Sofia, Bulgaria,” Ganev et al tracked the subjects who had first been assessed in 1978-1980 as part of yet another World Health Organization Study. All the patients in the original study had had a recent onset of their illness.
Sixteen years after that first study, Ganev and his colleagues found that “one-third of the patients had a good outcome. The rest showed moderate to severe psychiatric symptoms and social disability.”
While it’s not exactly a slam-dunk, Ganev et al went on to say that, in comparison with other similar studies done in western countries, their results showed a lower mortality rate and a lower percentage of institutionalized patients.
The researchers felt confident they knew the reason that the Bulgarian schizophrenics did better over time, than, say the American ones. It can only be understood, they write, within “the context of the high level of family involvement in patients’ care.”
So to finish up. . .I don’t expect you to actually read all of the following link. But in Rolling Stone Magazine’s article, “Bitter Pill,” if you skip way, way, way down, or do a “Find” to the section called “Beyond Drugs,” you’ll find some pretty touching stories of schizophrenics living in the developing world, documented by William Eaton, well-known schizophrenia researcher in the Department of Mental Health at Johns Hopkins Bloomberg School of Public Health. They are touching–and they do make you think about whether our method of treatment is indeed the best.
Consider the following. Eaton was in a cluttered bazaar in Aswan, Egypt. There, he says, he met a schizophrenic man, “his tongue flicking, his face bent by the tremors of Haldol — who was employed in his father’s tiny shop; later he visited the man’s home, where his wife had just given birth to the couple’s first child. ‘The point is that this guy’s family structure was such that he could get married because he was being protected by his father, Eaton says. ‘That’s bound to be better than someone in the West who has to drop out of college and ends up on the street homeless.’
It seems hard to argue the point.