Exploring the cultural landscape of stigma

Исследование культурного пейзажа стигмы

Р. Рагурам

МBBS DPM MD MRCPsych

Профессор и заведующий отделением психиатрии, Бангалор, Индия

Постоянно увеличиваются факты, указывающие на то, что социальные факторы влияют на отклик и исход психических болезней. Среди них стигма фигурирует как значимая и важная переменная. Сокращение стигмы, связанной с психической болезнью, стало приоритетом, и чтобы быть эффективным, оно требует инновационных и эффективных вмешательств в психическое здоровье общества, информированных ясным пониманием, что такое стигма. Стигма часто описывается со ссылкой на нормы и ценности, которые необходимо рассматривать при ее оценке, особенно при кросс-культуральных сравнениях. Поэтому попытки охарактеризовать природу стигмы необходимо сконцентрировать на том, что стигматизируется, как стигматизируется, а также на контекстуальных детерминантах стигмы.

There is increasing evidence indicating that social factors influence the response and outcome of mental illnesses. Among them, stigma figures as a prominent and important variable. Mental illness related stigma reduction has become a priority, and to be effective, it requires innovative and effective public mental health interventions informed by a clear understanding of what stigma means. Stigma is often described with reference to cultural norms and values, which must necessarily be considered in assessing it, especially for cross cultural comparisons. Therefore, attempts at characterizing the nature of stigma need to focus on what is stigmatized, how it is stigmatized, and the contextual determinants of stigma.

With this perspective, over the past decade, we have explored notions of stigma in relation to psychiatric illnesses in the Indian setting. Based on Goffmans formulation of stigma as spoiled identity, local concepts of stigma were validated in clinical cultural studies of depression and schizophrenia. The stigma scale which forms a part of the Explanatory Model Interview Catalogue (EMIC), is not a fixed scale, but rather provides a framework to elicit narrative responses while also lending itself for categorical coding. The questions explored the social consequences of disclosure and self perceived consequences of having the illness. Items considered for inclusion in the assessment required verification and cultural validation from ethnographic fieldwork in the local setting and pilot testing of interview items. The responses were coded with values from 0 to 3 indicating denial, uncertainty, the possibility, or definite affirmation of each stigma-indicative item. Values for each item were combined additively in a scalewith each item having equal weight. Calculation of Cronbachs alpha and the correlation of each item to the total were used to assess the internal consistency of the items and their suitability for use in the final version of the scale. Items that were incompatible with the locally coherent conceptualization of stigma were eliminated. In addition to scoring responses according to precoded categories for quantitative analysis, we also included narratives to elaborate the context and details of these responses, in a qualitative data set.

We found that patients diagnosed with depression had significantly higher scores on the stigma scale. The mean stigma scale score was 29,4 (SD=18,1, range = 0-72). The stigma scale was found to be internally consistent by computation of Cronbach's alpha, which had a value of 0,71. The stigma score was positively related to scores on the Hamilton depression rating scale. The narrative accounts indicated as to why depressive symptoms were perceived to be highly stigmatizing. Depressed patients reported concerns about respectability and status in society if they disclosed their problems. Although inhibiting disclosure typically resulted from shame and concern that it would diminish social standing, for some the reluctance to disclose arose from other reasons, including the pain it might inflict on the person to whom they disclosed. Adverse social impact of disclosure made various aspects of marriage a focus of concern. Depressed patients feared that if it were widely known that they were troubled by emotional problems, it would be difficult to arrange a marriage. They were also concerned about the impact of their illness on their own ongoing marriage. Women were especially vulnerable to this aspect of social stigma.

When we analyzed the relationship of the stigma scores to the pattern of symptom presentation among depressed patients, we noted that stigma was negatively associated with ratings of the prominence of somatic symptoms and conversely, positively associated with the prominence rating for depressive symptoms. The narrative accounts of symptoms and stigma clarified the dynamics of the interrelationship among depression, somatic complaints, and stigma. Although both depressive and somatic symptoms were seriously distressing, depressive symptoms affected the perceived social status of those who suffered from them in ways that somatic symptoms did not. The social meaning of somatic symptoms was less distressing because they closely approximated experiences that everyone had from time to time. Depressive symptoms, on the other hand, were considered to be private and socially disabling. Patients felt that they could interfere with marriage, diminish social status, and compromise the self-esteem required to perform effectively in society.

Our studies on schizophrenia again indicate that family care givers consider the illness to be highly stigmatizing. While studies from the West emphasize the role of perceived dangerousness and violence to be an important determinant of stigmatizing attitudes towards schizophrenia, we noticed that such associations were strikingly absent among our study sample. On the other hand, suspiciousness and disorganized behavior were considered to be major contributory factors. We also observed that stigma influenced the family to conceal the illness and contain the problem within the home setting. Families hoped the problems of the affected person would get better in time, and they chose to avoid the social disapproval anticipated from seeking help outside. Many of these patients with prominent use of informal help and high stigma also made use of magico-religious and traditional healing methods, which provided a culturally more acceptable care in comparison to allopathic treatment. Narrative accounts provided insights as to how the families perceived themselves to be socially tainted and disadvantaged consequent to the occurrence of the illness. The social vulnerability of women with respect to prospects of marriage highlighted the impact of gender on stigma.

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These studies emphasize the role of culturally sensitive investigations to unravel the social moorings of stigma and its determinants. The findings also indicate the value of integrating quantitative and qualitative methods in exploring the cultural meanings and determinants of stigma.

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