Stig2 UMDMJ 2006

Toward an Understanding of Stigma in the Lives of People With Mental Illnesses : 

Toward an Understanding of Stigma in the Lives of People With Mental Illnesses Bruce Link UMDMJ February 16, 2006

Extended Background -- 25 Years of Stigma Research: 

Extended Background -- 25 Years of Stigma Research

Labeling Theory: 

Labeling Theory Scheff in Being Mentally Ill p.82 In a crisis, when the deviance of an individual becomes a public issue, the traditional stereotype of insanity becomes the guiding imagery for action, both for those reacting to the deviant and, at times, for the deviant himself. When societal agents and persons around the deviant react to him uniformly in terms of the traditional stereotype of insanity, his amorphous and unstructured rule-breaking tends to crystallize in conformity to these expectations, thus becoming similar to the behavior of other deviants and stable over time. The process of becoming uniform and stable is completed when the traditional imagery becomes a part of the deviant’s orientation for guiding his own behavior.

A Down Playing of Stigma: 

A Down Playing of Stigma Sociologist Walter Gove (1982) -- “stigma appears to be transitory and does not appear to pose a severe problem” Crocetti et al. (1974) Former patients “enjoy nearly total acceptance in all but the most intimate relationships” NIMH-sponsored meeting of experts in 1980 decided not to mention “stigma” in the title of its proceedings because it was not an appropriate designation when “one is referring to negative attitudes induced by manifestations of psychiatric illness”

Dismissal of Importance of Direct Experiences of Rejection: 

Dismissal of Importance of Direct Experiences of Rejection Walter Gove -- John Clausen Only a small percentage of people with mental illness reported direct discrimination in Jobs, Housing, Education, Licenses etc. … reports were too rare to claim that stigma is widespread or severe in its consequences.

The Problem?: 

The Problem? How might labeling and stigma have an impact when reports of discrimination by people who have been hospitalized are infrequent?

Modified Labeling Theory: 

Modified Labeling Theory

Influences: 

Influences Empirical -- Social Psychological Experiments of Farina Theoretical -- Symbolic Interactionism

Modified Labeling Theory: 

Modified Labeling Theory Statement of the Theory Consequences Feel bad – depressed, fearful, ashamed Induce Coping Efforts – Secrecy, Withdrawal, Education, Distancing, Challenging Impair performance in social interactions

Modified Labeling Approach: 

Modified Labeling Approach Societal Conceptions of What it Means To Have a Mental Illness Labeling: Conceptions Become Personally Relevant Labeled Persons Response Secrecy, Withdrawal etc. Negative Consequences Self-esteem, Networks Vulnerability to Chronicity Not Labeled Societal Conceptions Not Relevant to Self No Consequences Due to Labeling

Consequences of Stigma for Persons with Mental Illnesses: 

Consequences of Stigma for Persons with Mental Illnesses 1) Unemployment and income loss (Link 1982; 1987; Link et al. 1991) 2) Constricted social support networks (Link et al. 1989; Perlick et al. 2001) 3) Quality of life (Rosenfield 1997; Markowitz 1998) 4) Depressive symptoms, demoralization (Link 1987; Link et al. 1997) 5) Delayed help seeking (Sirey 2001) 6) Self-esteem (Wright 2000)

What Can we Do About Stigma?: 

What Can we Do About Stigma? Stigma Intervention Project -- NAMI Funded “Empowering Consumers to Overcome Stigma” Clubhouse Based -- Piscataway, NJ Random Assignment to Stigma Intervention using a Delayed Implementation Design 18 week group intervention led by a social worker -- focused on stigma coping approaches

Measures Created : 

Measures Created Coping Secrecy -- (9-items alpha = .84) If you have ever been treated for a serious mental illness the best thing to do is keep it a secret Withdrawal -- (9-items alpha = .70) If you though someone you knew held negative opinions about people with mental illness, you would avoid him or her Educating -- (3 items alpha = .67) After you entered psychiatric treatment you found yourself educating others about what it means to be a psychiatric patient Challenging -- (5 items alpha = .72) When someone says something that stigmatizes people with mental illness you let them know you disagree with them Distancing -- (3 items alpha = .63) You are very different from most people who have mental illnesses

Measures Created: 

Measures Created Feeling Misunderstood (3-items, alpha = .62) Most people cannot understand what it is like to be a patient in a mental hospital Feeling Different and Ashamed (4-items, alpha = .70) Having experienced a mental illness has made you feel very different from other people The experinece of entering a mental hospital made you feel ashamed

Intervention Failed to Induce any Changes: 

Intervention Failed to Induce any Changes 70/88 successfully re-interviewed at 6 months about evenly split intervention and control. Intervention group showed no advantage in perceptions of stigma, experiences of stigma, coping orientations, depressive symptoms, or self-esteem. After 6 months the “control group” received the intervention. We followed subjects (N=55) two years later to see if the intervention had a “sleeper effect” but there were no gains in any area over the two year time period.

Club Study: Stigma and Self-esteem: 

Club Study: Stigma and Self-esteem Longitudinal Study -- Measures at baseline, 6 months and two years. 88 persons with serious mental illnesses recruited at baseline with 70 (79%) and 54 (61%) followed at 6 months and two years respectively.

The Relationship Between Stigma (Devaluation Discrimination) at Baseline and Self-Esteem at 6 Month Follow-up: 

The Relationship Between Stigma (Devaluation Discrimination) at Baseline and Self-Esteem at 6 Month Follow-up 16.0% 27.3% 60.9%

Club Study: Stigma and Self-esteem: 

Club Study: Stigma and Self-esteem Controlling for chart diagnosis, gender, baseline self-esteem CESD - depressive symptoms, and baseline self-esteem in logistic regression -- A person scoring at the 90th percentile of the devaluation-discrimination scale has 8.8 times the odds of low self esteem at follow up compared to a person scoring at the 10th percentile

Issues for Far: 

Issues for Far Responds to debate about importance of stigma – gives a plausible mechanism as to how stigma effects people even if direct discrimination is rare Tried but failed to intervene to address stigma. Should we really believe that direct discrimination is rare? Are these quantitative scales producing a comprehensive assessment of stigma processes? What can we do in clinical settings to address stigma?

Measuring Mental Illness Stigma: 

Measuring Mental Illness Stigma Bruce Link, Larry Yang, Jo Phelan Pamela Collins Schizophrenia Bulletin – 2004

Measurement Approaches Encountered in Stigma Review: 

Measurement Approaches Encountered in Stigma Review Highly dependent on fixed-format self-report measurement of stigma experience and perception Assessments of structural stigma are lacking Timing of measurement not strategically planned so as to understand the unfolding of stigma – no longitudinal studies of first hospitalization patients

R21 – Developmental Study: 

R21 – Developmental Study Designed for situations in which feasibility of a study design needs to be established or new measures need to be developed. Two years with a maximum of 275K in direct costs. 15 page application

New Measures: 

New Measures Ratings of stigma components based on narratives describing entry into the hospital and the experience in the hospital. Drawing on work in life events research Ratings of stigma emotions based on the same narratives Drawing on work on expressed emotions in caregivers Ratings of stigma experiences and conditions based on direct observations by qualitative researchers Drawing on qualitative methodologies

Need for a Longitudinal Study: 

Need for a Longitudinal Study Prior research has increased understanding of the ways in which stigma produces harmful consequences but we do not yet know how the stigma experience unfolds in people’s lives. There are no previous prospective studies of stigma among persons experiencing a first episode of disorder or a first hospitalization. In a review of over 100 articles on stigma we found only a few that were longitudinal, and none of them followed people from an early point in their career. Because of this we have no direct information on the unfolding of stigma or on the emergence of associations between stigma experiences and feelings and potential outcomes of stigma. This represents an important unfilled gap in our knowledge about stigma as it applies to people with mental illnesses.

Need for a Longitudinal Study: 

Need for a Longitudinal Study . Filling the gap will help us understand how and when it is best to intervene to reduce stigma and its consequences In order to conduct the longitudinal study we first need to develop new measures and test those measures in a developmental study. It is for this reason that we are applying for an R21 developmental grant

Why first hospitalization cases?: 

Why first hospitalization cases? It is a critical time in the stigma induction process and thus a likely focal point for developing interventions to reduce stigma. Hospitalization is a powerful labeling experience that involves official labeling. People with mental illness point to this experience as a traumatic one that involves events and experiences that are powerful triggers to experienced stigma. First hospitalization brings extended contact with the health care system and the possibility of using that contact to mount efforts to reduce stigma.

Recruitment Sites: 

Recruitment Sites Sites are five hospitals in the Bronx and Manhattan: Lincoln Medical Center Jacobi Medical Center North Central Bronx Medical Center Bronx Lebanon Medical Center Schizophrenia Research Unit of New York State Psychiatric Institute

Measures of Stigma: 

Measures of Stigma New measures – to be described in detail below Existing fixed format quantitative measures Wahl – stigma experiences scale Ritscher – internalized stigma scale Link – Perceived Devaluation Discrimination Scale Link, Struening et al. – Stigma Coping Measures – secrecy, withdrawal, challenging, educating, distancing Link, Struening et al. – Stigma feelings – feeling misunderstood, feeling different and ashamed

Outcome Measures: 

Outcome Measures Self Esteem Depressive Symptoms – Center for Epidemiological Studies Depression Scale Engagement in Treatment Adherence to Medication Social Networks Employment Course of Illness via symptoms, Positive and Negative Symptom Scale (PANSS)

Control Variables : 

Control Variables Illness Related Baseline symptom levels – PANSS Diagnosis Insight into Illness Pre-Morbid Functioning Global Assessment of Functioning Duration of untreated symptoms Demographic -- Personal Age, gender, race/eth, education, parental SES, first occupation, current/most recent occupation. Mastery, Conscienciousness, Attributional Style

Rating Narratives for Stigma Components: 

Rating Narratives for Stigma Components We will assess stigma-relevant experiences by interviewing subjects about their early experience with psychiatric hospitalization and its aftermath. Modeled on SEPRATE approach Bruce Dohrenwend and colleagues for the assessment of stressful life events The approach constructs a narrative around an event by first identifying the event (e.g. first hospitalization) and then asking a series of probes about it such as tell me what happened, who else was there, what did they say about what was happening, what happened in the period leading up to the event, had anything like this happened before. The approach can be tailored to a specific event such as a psychiatric hospitalization to include probes like – what did the psychiatrist say was wrong, were any physical constraints used by police or in the hospital, and so on.

Rating Narratives for Stigma Components: 

Rating Narratives for Stigma Components Three steps the basic facts, the who, what, when, why, and where associated with the pathway into the hospital, the hospital experience and the aftermath of the hospitalization. reports about occurrences in different domains of participants lives – how family, friends, treatment providers, co-workers, girlfriend/boyfriends responded to the hospitalization. feelings of stigmatization such as shame, embarrassment, differentness, awkwardness, or being put down.

Processing and Coding: 

Processing and Coding Interviews are audio taped and transcribed Transcripts are entered into a text analysis program such as Atlas. Coders are trained as to what is meant by each of the stigma components. A coding manual provides examples of how to code specific stigma components. Coding of text relevant to stigma components proceeds within Atlas mindful of new stigma relevant themes that do not fit our current conceptual scheme

Types of Analysis Possible: 

Types of Analysis Possible Entirely qualitative Quantitative -- Counts of codes Quantitative Ratings of Qualitative Material

Potential Benefits: 

Potential Benefits We will be able to tell a convincing story about the unfolding of stigma that will inform efforts to minimize its harmful effects.