Hinduism and mental health

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HOW STIGMATISING IS SCHIZOPHRENIA IN INDIA?

DR. R. THARA & DR. T. N. SRINIVASAN

Summary Stigma is a social devaluation of a person because of personal attribute leading to an experience of sense of shame, disgrace and social isolation. The nature of stigma in schizophrenia and its relationship to attribution was studied in one hundred and fifty-nine urban patients of Madras, India who fulfilled DSM-IV criteria for schizophrenia. The response of the primary care givers to fourteen questions on stigma and 14 on what they thought attributed to the illness was elicited. Based on the mean stigma score, the entire sample was divided into two groups- those with high and low stigma. Marriage, fear of rejection by neighbour, and the need to hide the fact from others were some of the more stigmatising aspects. Many care givers reported feelings of depression and sorrow. Discriminant function analysis showed that female sex of the patient and a younger age of both patient and caregiver were related to higher stigma. Among attribution items, having no explanation to offer, and attributions to faulty biological functioning, character of life style, substance abuse and intimate interpersonal relationship discriminated between the two groups. The relevance of stigma in the cultural context is described.

INTRODUCTION

Stigma refers to a relationship of devaluation in which one individual is ’disqualified from full social acceptance’. It is an attribute that is deeply discrediting and indicates an experience of shame and disgrace. Stigma is a characteristic, behavior, or experience that may cause the person with the stigma to be rebuked by others. The stigmatised experience social distancing by others who are not ready to accept them as members in their social groups. Many health conditions are stigmatised, from leprosy in Biblical times to HIV in this

century. The stigma of mental illness is as old as the disorder and is a social stereotype that has continued to plague society from time immemorial. Considerable research has docu- mented the stigmatization of people with mental illnesses and its negative consequences (lVIcCarthy et al. 1995; Phelan et al. 1998). While on one hand, the number of organisations working for the mentally ill all over the world have increased and a number of consumers and their families have come out in the open to fight for their rightful places in society, one is not sure whether all this has really led to a decrease in stigma and has changed the attitudes of the public towards mental illness. In Brunton’s experience (1997) the starting of a new community mental health base had little or no effect on the attitudes of local residents towards the mentally ill after 6 months. There was also evidence that attitudes towards the mentally ill had hardened both locally and within a control area which had no such centre. Rabkin (1974) and Bhugra (1989) have stated that people are better informed about mental

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illness now; yet real or perceived stigma is very much a reality. It is however heartening that nodal organisations such as the World Psychiatric Association have launched a global anti-stigma campaign which should increase the sensitivity to this subject.

Stigma needs to be understood at the micro (interpersonal) and macro (social) levels (H’etu 1996) It has been shown that stigma may also seriously affect families of psychiatric patients. Families feel more burdened by prejudices and stigma in their process of caring for the mentally ill. People who live with someone with mental illness, like the sufferers themselves, often consider the condition shameful. Little empirical research has addressed this problem of care-giver stigma (®’l3rien, 1998) The stigma experienced by the care-givers could be over different issued related to the patient. It could be with regard to the knowledge that there is someone ill living with them, seeking psychiatric treatment and hospitalisation, the behaviour of the patient in public, the issue of marriage of the patient or others in the family and the like (Verghese & Beig, 1974; Phelan et al. 1998) Negative attitudes are more likely to be evoked if the patient is male, of lower socio-economic class, violent, unpredictable and lacking social ties. The availability and accessibility of psychiatric services and the level of familiarity with such services influenced social acceptability.

Fabrega (1990) traced historically the cultural and social factors that contributed to the development of psychiatric stigma. The stigma of mental illness needs to be studied within its sociocultural context in order to understand its origins, meanings and consequences. Studies of attitudes towards mental illness and psychiatric stigma in Asian Cultures (Chee Hong Ng, 1997; Ng, 1997) have found that response to mental illness has many variations across cultures but there are some common features too. The stigma of schizophrenia is one of the factors that leads to a lack of emphasis on the

health promotion needs of persons with the disorder. The caregivers of schizophrenic patients experience immense burden and also share the stigma. The family is often the primary and frequently the only support system for the patient. Family members living with a patient of schizophrenia experience shame, grief, guilt, fear, and isolation, all of which render them less able to be proactive (O’Brien, 1998). Hence the knowledge about how isolated or how uncomfortable the family members feel about their ill relative and the factors related to such stigma are important and need consideration in the family management of schizophrenia.

This study was conducted with the primary objective of investigating the nature and degree of stigma experienced by the primary care givers of schizophrenic patients in the Indian society. It also looked at the association between stigma, social variables and the cause for the illness as perceived by the caregivers (attribution).

METHOD

Study Centre The study was conducted at the Schizophrenia Research Foundation (India) located in the city of Chennai (formerly Madras) in southern India. This is a voluntary non-governmental organisation involved in activities of research, rehabilitation and public education on schizophrenia.

Patient Sample The sample consisted of patients of schizophrenia, diagnosed as per DSM-IV criteria (APA,

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1994) who attended the out-patient department of the Schizophrenia Research Foundation. The services provided at the OPD are free of cost, catering to essentially the middle and lower socio-economic group. All the patients included into the study lived with families and were accompanied by the primary care giver. The primary care giver by definition was the person living with the patient in the same household who spent the maximum time and effort in caring for the patient. A consecutive sample of 159 patients were assessed during the study period of June-December 1997.

Assessment The &dquo;Family Interview Schedule&dquo; used in the ‘ ‘International Study of Schizophrenia&dquo; (ISOS) (Sartorius et al. 1996) was adopted for this study to assess stigma and attribution. The centre had earlier been involved in the ISOS study and the author RT was well versed in the use of its assessment instruments. The interview schedule has two sections, one that assesses the nature and degree of stigma experienced by the primary care-giver and the other the cause attributed by the caregiver for the illness. The stigma section consists of 14 questions on various items such as difficulties with neighbours, marriage, fear of the fact of mental illness being revealed to others, feelings of shame, embarrassment, guilt and depression. The degree of stigma on each of the items is scored on a 4-point scale (0 to 3) ranging from not at all to a lot. The total stigma score is compiled by adding the scores on the 14 items of the questionnaire. Care-givers experiencing ’high’ stigma were differentiated from those having ’low’ stigma if their total stigma score was above the average for the cohort. In the enquiry on care-giver attribution of cause for the illness a choice of 12 causes were offered and the respondent was asked as to which of them he/she thought most to have caused the illness. This included the option that the informant could not identify any specific cause.

Statistical analysis Analysis was done to find the factors related to experience of ’high’ stigma in comparison to those who experienced ’low’ stigma. A discriminant function analysis was conducted towards this objective using the SPSS version 5.01. Taking the socio-demographic features of the caregivers and the causal attributions made by them as variables.

RESULTS

Patients

Men constituted a little over 50% of the sample (87, 54.7%). The majority (105, 66%) were between the ages of 31 & 50 whilst 27% were below 30 years of age and 7% were over 50. The mean age of the patients was 36.5 years. The mean duration of illness was 11.9 years. Nearly 60% of them were from middle income families and most were Hindus (87%).

The primary caregivers The PCGs also had a near equal gender distribution with 83 (52.2%) being men and the other 76 women. The mean age of the PCGs was 50.3 years. Over half of the PCGs were parents divided equally between the fathers and mothers. Husbands were the PCGs in 29 (18.2%), wives in 18 (11.3%), and siblings (14%) formed the rest.

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Causal attributions The largest number of respondents (56, 35%) had no explanation to offer for the cause of illness in their family member. The common causes identified by others were difficulties in intimate interpersonal relationships (34, 21%), Character or life style (29, 18%) and influence of social environment (19, 12%). The other causes implicated by a lesser number were faulty biological functioning (14, 9%), heredity (12, 8%), supernatural forces(11, 7%), physical effects of environment (10, 6%), substance abuse (7, 4%), faulty nutritional habits (7, 4%), and specific precipitating event (2, 1 %).

Nature of stigma The issues related to stigma, which troubled the caregivers, is given in Table 1 in the decreasing order of their frequency. A feeling of grief or depression because of the illness in the relative was the most common one, seen among 80% (127) of the caregivers. The other issue which was highly disturbing to the caregivers was the marriage of others in the family (87, 55%). A worry that people would find out about the patient (61, 38%), a fear that neighbours would treat them differently (59, 37%) or avoid them (51, 32%), and the need to conceal the fact of mental illness (57, 36%) were the other less frequent issues faced by the care-givers. Few admitted to feelings of guilt (33, 21 %) and having sought out people with similar problems (31, 20%).

High and Low Stigma Groups The total stigma score was computed for the entire sample. The mean stigma score was 1$.84 (s.d. = 3.69). Sixty one (38%) caregivers were classified as having ’high’ stigma as their stigma score was above the mean, the others (98, 62%) were classified as ’low’ stigma group. None of the socio-demographic variables, except religion emerged as statistically sig-

nificant. (Table 2) Hindus in our sample seemed to have higher stigma than both Muslims and Christians. Although not statistically significant, we found that stigma tended to be more

Table 1 Rank order of stigma items

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when the patient was a female, when the PCG was female and in those with a shorter duration of illness. A comparison of the two groups in attribution items revealed that those PCGs who had no explanation to offer for the illness of their family member reported higher levels of stigma than those who had attributed some definite factors to be responsible for the illness. A discriminant function analysis was performed to identify factors that discriminated

between high and low stigma taking in socio-demographic factors and attribution responses as variables (Table 3). Three demographic variables and five attribution items discriminated significantly between the two groups. They were the sex of patient (female), patient age (younger), and care giver age (younger), attributions of &dquo;no explanation&dquo;, &dquo;character or life style&dquo;, &dquo;substance abuse&dquo;, &dquo;problems in intimate interpersonal relationships&dquo; and &dquo;faulty biological functioning&dquo; as causes for the illness.

DISCUSSION

The primary objective of this study was to assess the presence and degree of stigma as perceived by the primary care givers of patients suffering from schizophrenia. The duration of illness varied from six months to over 25 years and less than 10% were first episode patients. It was.a also essentially family stigma that we assessed, and all the respondents lived with the patients. This is by and large the norm in most Indian families, and there are very few patients who live alone.

In both univariate and multi-variate analyses the gender of the patient proved to be important. Stigma was higher if the patient was female. This is no unexpected finding,

Table 2 Low and high stigma groups - characteristics

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Table 3 Discriminant function analysis - high and low stigma

especially in our cultural setting, wherein the question of marriage assumes overpowering importance even when the girl becomes an adolescent. Over 90% of the marriages being still arranged by the families, the fact of mental illness poses to be a heavy burden on the entire family. This is also reflected in the finding that worry about marriage was reported by 3S% of the family members.

Phelan et al. (1998) in their study of family stigma in 156 first episode patients also found that concealment of the fact of mental illness, which is essentially a reaction to perceived stigma, was more with women patients. However they remarked that they were unclear as to why this should occur and explained the finding on the basis of visibility of behaviour. In our culture and setting, explaining this, really poses no problems.

Fear and worry about friends and neighbours avoiding them and treating them differently was the concern of over 20% of the respondents. This was however not related to the clinical status of the patient and nor did it result in efforts of the family to conceal the patient’s status. When families were questioned about this, they expressed the view that after a period of time it was well nigh impossible to hide the fact from neighbours and friends, and they also seemed to receive more help and understanding if they discussed it with the neighbors.

The other finding of interest was the association between attribution and level of stigma. When the PCC~s were asked to name single or multiple factors which they thought led to the development of the illness, one third of them had no explanation. This, while not being a totally unexpected result, reiterated the observations of previous researchers of the need to educate families about mental illness. Ranking next in frequency were the attributions of problems in interpersonal relationship or in family life, character or life style which included too much worries, overwork and fatigue, causes in social environment as social class, social change etc, and faulty biological functioning such as brain disease, injury or infection. The interesting feature was that this lack of an explanation has emerged to be a significant factor in differentiating low and high stigma families. Absence of knowledge about cause could shield the family from feeling guilty of being involved in the causation of the illness or failing to take preventive measures. This could reduce the experience of stigma by them.

Link et at. (1997) have observed that stigma of schizophrenia continues to complicate the lives of the stigmatized, including their families, even as treatment improves their symptoms and functioning. Health professionals must, therefore address stigma as a separate and important factor in its own right while working at maximising the well being of people they treat and rehabilitate.

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REFERENCES

AMERICAN PSYCHIATRIC ASSOCIATION (1994) DSM-IV: Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Washington, APA Press.

BHUGRA, D. (1980) Attitudes towards mental illness: a review of the literature. Acta Psychiatrica Scandinavica, 80, 1-12.

BRUNTON, K. (1997) Stigma. Journal of Advanced Nursing, 26(5), 891-8. CHEE HONG NG (1997) The stigma of mental illness in Asian cultures. Australian & New Zealand Journal of

Psychiatry, 31, 382-390. FABREGA, H. Jr (1990) Psychiatric stigma in the classical and medieval period: A review of the literature.

Comprehensive Psychiatry, 31/4, 289-306. H’ETU, R. (1996) The stigma attached to hearing impairment Scandinavian Audiology Supplement, 43, 12-24. LINK, B.G., STRUENING, E.L., RAHAV, M., PHELAN, J.C. & NUTTBROCK, L. (1997) On stigma and its

consequences: evidence from a longitudinal study of men with dual diagnoses of mental illness and substance abuse. Journal of Health and Social Behaviour, 38(2), 177-90.

McCARTHY, J., PRETTYMAN, R. & FRIEDMAN, T. (1995) The Stigma of psychiatric in-patient care. Psychiatric Bulletin, 19/6, 349-351.

NG, C.H. (1997) The stigma of mental illness in Asian cultures. Australian and New Zealand Journal of Psychiatry, 31(3), 382-90.

O’BRIEN (1998) Health promotion and schizophrenia: the year 2000 and beyond. Holistic Nursing Practice, 12(2), 38-43.

PHELAN, J.C., BROMET, E.J. & LINK, B.G. (1998) Psychiatric illness and family stigma. Schizophrenia Bulletin, 24(1), 115-26.

RABKIN, J. (1974) Public attitudes towards mental illness: a review of the literature. Schizophrenia Bulletin, 10, 9- 33.

SARTORIUS, N., GULBINAT, G. & HARRISSON, G. (1996) Long term follow-up of schizophrenia in 16 countries. Social Psychiatry & Psychiatric Epidemiology, 31, 249-258.

VERGHESE, A. & BEIG, A. (1974) Public attitudes towards mental illness- the Vellore study. Indian Journal of Psychiatry, 23, 44-48.

Dr. R. Thara, Director & Dr. T.N. Srinivasan, Consultant Psychiatrist, Schizophrenia Research Foundation, R/7A, North Main Road, West Anna Nagar Extension, Chennai-600 101, INDIA. Tel & Fax: 6263971; e-maii:[email protected]

Correspondence to Dr. Thara.