Chapter 6 Chronic Illness & Stigma PDF

Chapter 6 Chronic Illness & Stigma Disease vs. Illness Disease is defined by medical criteria such as biophysical abnormalities Illness refers to the subjective experience of disease, emphasizing the individual's perception of physical symptoms. The medical model often over...

Chapter 6 Chronic Illness & Stigma Disease vs. Illness Disease is defined by medical criteria such as biophysical abnormalities Illness refers to the subjective experience of disease, emphasizing the individual's perception of physical symptoms. The medical model often overlooks social, psychological, and behavioral factors related to illness. Two Main Directions in Chronic Illness Studies: 1. Epidemiological studies focus on populations and disease. 2. Analyses of illness experience are the primary focus. Focus on Illness Experience: Analyzing how individuals with chronic conditions define and manage their illnesses. Considering practical, social, and identity-related implications. Shift in Chronic Illness Research: Focus less on physical symptoms, more on meanings individuals assign to them. Emphasize consequences for daily living and long-term physical incapacity. Development of Research: Emphasizes implications for self, identity, and social relations. Limitations in Micro-Social Context: Overlooks broader contexts shaping chronic illness. Parsons' Sick Role Theory: Found inadequate for understanding chronic illness experiences. Emphasized temporary exemption from responsibilities. Ethnographic Challenges: Highlighted patients' negotiations with physicians. Emphasized prolonged nature of chronic illness and active role of patients. Under investigated Dimensions: Corporeal facticity and emotions in chronic illness. Importance of Emotions: Intrinsically linked to bodily experiences and influence physical and social disruption. Role of Shame and Stigma: Mark individuals as different and less valuable. Managed through information control and collective efforts. Influence of Social Contexts and Institutions: Shaping and being shaped by sociohistorical approaches to medicine. Reflect changes in medical formulations and societal responses. Erving Goffman’s Stigma Erving Goffman’s (1922-1982) work on stigma and mental illness stemmed from his observations at St. Elizabeth's Hospital in Washington DC. He developed fundamental concepts regarding how socially defined "difference" influences the status, roles, rewards, and penalties associated with mental illness. His early articles and book "Asylums" provided an analysis of organizations dealing with reorienting the self in various roles, such as mental patient or prisoner, and outlined the pathways and social processes involved in these moral careers.  In "Stigma," Goffman focused on the aftermath of occupying a negatively valued status, elaborating on the types, dynamics, and effects of devaluation associated with social circumstances. Goffman's focus on mental hospitals sharpened his views on identity, interaction, and context under extreme conditions, drawing on ethnographic insights. Goffman's critique of long-term hospitalization for mental illness highlighted the notion that patients often recovered despite the environment rather than because of it. His concept of stigma remains a foundational framework for understanding the social phenomenon and continues to impact research and efforts to reduce prejudice and discrimination. Study Background of “Asylums”: Goffman chooses to focus on the psychiatric hospital as a social institution. The main objective is to develop a sociological theory of self-structure. Methodology: Goffman uses a Weberian approach to highlight structural homologies between total institutions. He integrates his own observations at St. Elizabeth's Hospital in Washington into a broader sociological framework, combining data from sociological and fictional literature. Themes in "Asylums": Analysis of the daily experiences of patients, focusing on the system of secondary adaptations. Progressive development of a sociological theory of self, highlighting the individual's ability to distance themselves from the institution. Analysis of the System of Secondary Adaptations: A strong point of the research, explores the practices of inmates to obtain satisfaction while avoiding direct confrontations with staff. Sociological Theory of Self: In Goffman's theory, individuals have both front stage and back stage selves. The front stage represents the public realm, where people are in the presence of others and actively engaged in impression management. This is where individuals present their desired self-image and adhere to societal norms and expectations. Proposes a vision of the individual capable of positioning themselves between identification and opposition to the institution, and of modifying their attitude accordingly to regain balance. Examples of front stage and back stage behavior: how people present a polished image of themselves in a job interview or on social media Originality and Richness of "Asylums": The in-depth analysis of the system of secondary adaptations and the conceptual exploration of the typical medical scheme are particularly noteworthy. The sociological theory of self offers stimulating perspectives for psychologists interested in the process of socialization. Stigma Social stigma is the extreme disapproval of an individual based on social characteristics that are perceived to distinguish them from other members of a society. Stigma is about social control. A corollary to this is that stigma is necessarily a social phenomenon. Erving Goffman presented the fundamentals of stigma as a social theory, including his interpretation of “stigma” as a means of spoiling identity. By this, he referred to the stigmatized trait’s ability to “spoil” recognition of the individual’s adherence to social norms in other facets of self. Without a society, one cannot have stigma. To have stigma, one must have a stigmatizer and someone who is stigmatized. As such, this is a dynamic and social relationship.  Goffman identified three main types of stigma: (1) stigma associated with mental illness; (2) stigma associated with physical deformation; and (3) stigma attached to identification with a particular race, ethnicity, religion, ideology, etc. Goffman's typologies in Asylums (1961) and Stigma (1963) Phenomenon Types Examples Established for those labelled in capable and Nursing homes, harmless orphanages, poor houses Established for those labelled incapables and an TB sanitaria, mental unintentional threat hospitals Total Institutions Established to protect the community from Jails, P.O.W. camps, 'intentional' dangers and threats concentration camps Established to pursue an instrumental task Army barracks, boarding schools, work camps Established as retreats and training stations Monasteries, convents  Phenomenon Types Examples Situational Curtailment in social involvement withdrawal Inmate Responses to Intransigent line Challenging the institution with flagrant refusal to Mortification and cooperate Reorganization Efforts Colonization Acceptance of institutional conditions as preferable to those outside with satisfaction from procurement of inside resources Conversion Adoption of institution view of self with corresponding behaviors to be the 'perfect' inmate, patient, soldier to identifying with the staff and acting in their behalf 'Playing it Cool' Opportunistic use of all other strategies to maximize physical and psychological damage to self Phenomenon Types Examples Types of Stigma Abominations of the body Physical deformities Blemishes of individual character Mental Illness, Alcoholism, Obesity, Criminality, Homosexuality Tribal stigma Race, Religion, National Identities Public Knowledge of Discredited An obvious 'mark' that is easily Stigma (recognition) perceived or already known Discreditable Concealable 'mark' Phenomenon Types Examples Acceptance with Withdrawal from society, accompanied by Coping with isolation bitterness, sadness Stigma Acceptance with actions Incorporation into identity, e.g., Advocacy, Support Groups Passing Attempt to normalize or hide stigmatizing condition Correction Addressing to negate, e.g., Treatment Compensation Performing normal tasks in a different/extraordinary way, e.g., Special Olympics Hostile bravado Flaunting, usually with a component of anger, e.g., protest Victimhood Seeking secondary gains, e.g., sympathy and roles release Blessing in disguise Attaching special meaning, e.g., gift Stigma and Chronic Illness Every illness stigmatizes us to a greater or lesser extent. A disease like leprosy or HIV or any other sexually transmitted disease or mental illnesses, and these carry much heavier burden of stigma. If we have one of those diseases, we'll go to great lengths to hide it. All chronically ill people bear the burden of some stigma, even if you just have hypertension or diabetes or arthritis.  All of these illnesses make us somewhat less than normal. That's why people hide the fact that they have these illnesses and that they have to take medication or go to the doctor or do other kinds of treatment because they're managing their identity. In particular, they're managing the discreditable facts about their identity to maintain an identity of a normal person who is not in fact discredited, who doesn't carry any stigma of illness and so on.  Stigma is a common experience for people with various conditions, including psoriasis, diabetes, epilepsy, deafness, and mental illness. Understanding the nature and origins of social stigma is crucial, as it can have damaging effects on individuals' lives. Studies of epileptics, people with HIV/AIDS, and mental health patients illustrate coping mechanisms for dealing with stigmatizing social identities. AIDS & Stigma The example of AIDS illustrates how diagnostic labels can lead to social rejection and discrimination, particularly when associated with stigmatized groups. Initially, AIDS was associated with stigmatized groups like male homosexuals and intravenous drug users, leading to social rejection and denial of the sick role. Subsequent identification of AIDS among heterosexuals and children led to more sympathy, but social difficulties persist due to stigma.  HIV/AIDS elicits particularly negative societal responses, leading to marginalization of individuals and groups. Reasons for HIV/AIDS stigma include assumptions about high-risk behaviors, such as drug use or promiscuity. Women with HIV/AIDS may face additional stigma related to stereotypes about sexual deviance and irresponsibility.  Stigma trajectories in HIV/AIDS vary across different phases of the illness, affecting coping strategies and social relationships. Strategies for managing stigma include denial, disclosure decisions, and concealment, each with its own emotional and social implications. Disease and stigma trajectories for HIV and AIDS highlight critical points in the illness where social stigma may be experienced differently. Mental Illness & Stigma Stigma surrounding mental illness arises from societal attitudes and perceptions, including a belief that mentally ill individuals are embarrassing and potentially dangerous. Surveys show that many people prefer limited contact with those displaying psychiatric symptoms, indicating prejudicial attitudes towards mental illness. Public perceptions of mental illness are influenced by both personal contacts and media representations.  Media coverage often associates mental illness with violence, shaping public perceptions and contributing to stigma. Ex-mental patients employ strategies of information management to counter stigma, including selective concealment, therapeutic disclosure, and preventive disclosure. The label of ex-mental patient can have lasting effects on individuals' identities and lives, impacting their social relationships and integration into the community. While some researchers argue that stigma is short-lived and leads to treatment, recent studies suggest enduring effects of stigma on mental patients.  Illness labels have varying degrees of stigma, influenced by factors such as perceived causes, symptom visibility, and prognosis. Labelling theorists differ in their perspectives on the role of the stigmatized individual in managing their identity, with some emphasizing active participation in information management. Identity politics and social activism have emerged as collective responses to stigma, challenging negative social identities and advocating for positive self-image. Healthcare professionals and carers should recognize the importance of social identity and self-image to patients and consider these factors in providing individualized care. Framework Integrating Normative Influence on Stigma (FINIS). Adapted and reprinted with permission from Pescosolido et al. 2008b.