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Schizophrenia in India
– by Rangaswamy Thara, Sujit John
There is no organised community care for schizophrenia patients in India. It is most common to treat people in the mental hospitals, which are generally large and isolated from the community they serve. Efforts are now underway to make mental health care more accessible – under a revamped national Mental Health Program and the District Mental Health Program. Up to now– apart from a few sporadic instances – these efforts have not been successful yet, due to a lack of coordination as well as consensus and planning by the various state governments.
SCARF is a non-governmental organisation (NGO) based in Chennai committed to schizophrenia care and research since 1984. It runs an outpatient department and three residential facilities with a total inpatient strength of 150. Being a referral rehabilitation centre, most of its clients are chronic, treatment refractory and moderately to severely disabled.
However, in the past few years, due to increased awareness, there has been an increase in the utilisation of the services of the centre by first episode patients and individuals with shorter duration of illness. It started its community outreach program in Thiruporur nearly 15 years ago and covers about 200 villages and 5 urban slums – catering to a population of over 400,000. In 2009 SCARF is set to cover an additional 200 villages with a population of over a 100,000 people by expanding its community clinics.
Working with grass root level organisations in the rural areas, SCARF aims to train their field workers in the identification and referrals of persons with mental disorders to the clinic. Also, awareness of mental health problems in the population shall be increased, using methods such as street-theater, folk dance and drama – to name just a few ingredients of the community programmes. Other components include training the community workers to implement simple psychosocial rehabilitation measures, particularly the mobilisation of locally available resources, networking with other NGOs to set up a referral service and finally establishing family and community support groups for people with schizophrenia and other chronic mental illness.
In a logical extension of SCARF’s community services, the organisation set up its telemedicine network in 2006. At the moment there are seven peripheral centres connected to the hub at SCARF Chennai. The strategy adapted to set up the network mirrored the steps taken to establish the community clinics of SCARF. For financial reasons low cost technologies such as ISDN is used for connectivity rather than high cost ones.
Research on stigma and use of stigma reduction programmes including film festivals on mental health, study of children of persons with schizophrenia and genetic studies on schizophrenia, are other areas of work with great clinical relevance.
Prevalence and incidence
Among the epidemiological studies on psychoses conducted in India, one of the largest has been the Longitudinal Study of Functional Psychoses in an Urban Community (SOFPUC) in Chennai (formerly Madras) carried out by SCARF and the Department of Psychiatry, Madras Medical College (ICMR, 1990). A population of over 100,000 was screened. The age corrected prevalence rate of schizophrenia was 3.87/1000. Other studies in India have reported prevalence of 0.7/1000 to 14.2/1000. However comparability among studies has been limited by variations in population size, geographical area and diagnostic criteria.
The ICMR SOFPUC study also reported a higher prevalence of the illness in urban slums, in those living alone, in those with no schooling, and in those who are unemployed. Males were also reported to have had higher rate of illness.
The incidence rate in the same study ( Rajkumar et al, 1991) was 0.35 / 1000. This study did not report any difference in male-female incident rates in contrast to other studies, which had reported a higher preponderance among males.
The paucity of incidence studies in India could be due to the absence of demarcated catchment areas for health service delivery and lack of case registers and costs involved in conducting community surveys.
Course and outcome
There have not been many methodologically refined, prospective follow-up studies of schizophrenia in India. Following up patients in a country like this is difficult because there are no movement registers, no case registers and no centralised address pools to refer to. So unless the patient or his family chooses to stay in touch with the service facility, it would be impossible to follow patients up.
Under these circumstances SCARF has successfully conducted a 20-year follow-up study on first episode schizophrenia patients – one of the few long-term follow-up studies from the developing world. Ninety of the first episode schizophrenia patients from a predominantly urban background were followed up.
The pattern of course of illness for the followed up subjects at 20 years was that:
- about 8 % had achieved complete remission,
- 39 % had relapses with complete remission between episodes,
- 44 % had relapses with partial remission between episodes, and
- 8 % had a course of illness that was continuous in nature.
Mortality rates were quite high with the average age of death being 34.2 years, much below the average Indian lifespan of 60.5 years in 2002. Suicides accounted for 7 out of the 16 deaths.
A significant finding of the study was related to the occupational outcome of the cohort. The numbers who were employed at the end of 20 years with minimal or no dysfunction at work were nearly two-thirds of those followed-up.
The majority belonged to the low and middle income groups with no problems in finding jobs in the unorganised sector – such as street vendors, sales staff in shops and domestic help. Absence of any social security benefits by the state and pressure to find work as primary wage earners, significantly contributed to the good outcome in occupational functioning in these patients.
A distressing finding of the ICMR/SOFPUC study was the fact that one third of the cohort had never been treated – despite the fact that psychiatric facilities were in the vicinity. The untreated patients were older, had longer duration of illness, were more symptomatic and severely disabled compared to the treated group. They were also more likely to be uneducated, divorced and living in a larger extended or joint family.
Living with a large family was seen as crucial regarding the untreated status of the ill individual. The joint family system often credited with therapeutic qualities in providing care and protection to the patients resulting in better outcome has its flip side: A large family with multiple caregivers and wage earners were able to compensate for the lack of contribution by the ill person and took care of them without any medical treatment as the burden and responsibility were shared.
Other SCARF-studies showed that a number of individuals with schizophrenia remained untreated due to social rather than to clinical factors: The families that cared for them were against any treatment. This was even more striking in distant rural pockets. There families had already learnt to cope with the untreated state and were reluctant to introduce any medication that they were afraid “could tilt the balance”.
Another SCARF-study published in 2006 described the symptoms seen in 143 never treated schizophrenia patients. The average duration of untreated illness was 10.7 years with the mean age of onset being 36.2 years. Nearly half the sample had delusions, suspiciousness/persecution, hallucinatory behavior and conceptual disorganisation. This indicated that schizophrenia remained active even after many years. Analysis also revealed that positive and negative symptoms were not independent of each other but lay at the opposite ends of a continuum.
An important finding of the study was the identification of a distinct motor symptom cluster comprising of mannerisms and posturing, motor retardation, uncooperativeness, disturbed violation and poor attention.
In a series of studies on untreated patients with schizophrenia published by SCARF in collaboration with Robin McCreadie it was clearly shown that spontaneous dyskinesia (involuntary movements) indistinguishable from “tardive” dyskinesia, and parkinsonism was common in the chronically ill patients. It fluctuated over time and seemed to be an integral part of the disease process.
It was also shown that spontaneous dyskinesia and parkinsonism was not influenced by ageing or chronicity of the psychoses. Also, the nature of extrapyramidal symptoms (such as akinesia, rigor and tremor) in treatment of naive patients differed from those who have received medication. A Magnetic Resonance Imaging study also showed that never treated patients with dyskinesia may represent a subgroup of patients with schizophrenia, implying that the disease process could interfere with normal age-related anatomical changes in the basal ganglia.
In rural Tamilnadu, spirits, witchcraft, and magic were held responsible for possession states, hallucinations, irreverent talk and bizarre behaviour – characteristic symptoms in schizophrenia (Thara et al, 1998). As such, seeking religious help is often the first step, especially since this behaviour also is socially sanctioned. However, in the urban setting the explanatory models adopted by the families in understanding schizophrenia have shown that those living with patients in urban India rarely subscribe to the idea of supernatural causation of the illness. An examination on the pathways to care in mental health at the SCARF centre in Chennai and at its outreach centres in the villages also reiterated this. The first place of contact for treatment in 65 % of the patients was magico-religious in nature – with 80 % of the rural patients taking this option compared to the urban patients (50 %). The high rates of utilisation of magico-religious treatment was attributed primarily to the social pressure extended on the family by relatives, friends and neighbours even if the family did not subscribe to this particular mode of treatment.
The average time taken by a patient to reach appropriate mental health care was about 21 months in urban areas, while patients from the villages took almost 26 months to reach a mental health centre.
The challenge of schizophrenia care and research cannot be met with by one or two agencies or organisations. It requires a nation-wide, multi-professional and multifaceted programme by the Indian Government in partnership with private agencies. Community care has to be augmented and strengthened in order to reach the millions who are denied care and rehabilitation.