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The Stigma of Mental Illness in Global Context: First Findings from the SGC-MHS Bernice A. Pescosolido Indiana University The Fourth International Stigma Conference London, UK January 21-23, 2009 Goal ● To provide a brief background of the impetus and methods of the Stigma in Global Context – Mental Health Study ● To move quickly to offer an overview of preliminary findings from the SGC-MHS 1/22/2009 Pescosolido, Page 2 The SGC-MHS Team – Wave 1 Principal Investigators • • • • Investigators • Sigrun Olafsdottir, Boston University • Tait Medina, Indiana University Consultants • Kim Hopper, Nathan Kline Institute for Psychiatric Research • Aleksandar Janca, University of Western Australia International Collaborators • • • • • • • • • • • • • • • 1/22/2009 Bernice Pescosolido, Indiana University Jack K. Martin, Indiana University J. Scott Long, Indiana University Tom W. Smith, NORC Centro de Estudios de Opinión Pública, Argentina Bangladesh Unnayan Parishad (BUP), Bangladesh Fundacao Getulio Vargas (FGV) Opiniao, Brazil Agency for Social Analyses (ASA), Bulgaria Center of Applied Research, Cyprus College, Cyprus Centre for Survey Research and Methodology (ZUMA), Germany National Centre for Social Research, Great Britain TARKI Social Research Centre, Hungary Department of Sociology, University of Iceland, Iceland Korea Institute for Health & Social Affairs, South Korea Department of Marketing, Massey University, New Zealand Social Weather Stations, Philippines Markinor Ltd, South Africa Análisis Sociológicos Económicos y Políticos (ASEP), Spain National Opinion Research Center (NORC), United States Pescosolido, Page 3 The SGC-MHS – Other Partners Special Case Collaborators • • • • Department of Health Sociology, University of Tokyo, Japan Mark Tausig & Janardan Subedi, University of Akron (Nepal study) Piet Bracke & Mieke Verhaeghe, Ghent University, Belgium Ethan Michelson, Indiana University (China study) Advisors • • • • • • • • • • Rodney Elgie, Gamian-Europe Howard Goldman, University of Maryland School of Medicine Jibum Kim, NORC, University of Chicago Xingzhu Liu, Fogarty International Center John Monahan, University of Virginia School of Law Emeline Otey, National Institute of Mental Health Anne Rogers, University of Manchester Norman Sartorius, University of Geneva, Switzerland Susan Solomon, Office of Behavioral & Social Science Research Violet Yebei, Indiana University 1/22/2009 Pescosolido, Page 4 Project Funding & Institutional Support ● National Institutes of Health (R01 TW006374) ● Fogarty International Center ● National Institute of Mental Health ● Office of Behavioral & Social Science Research ● Icelandic Centre for Research and The University of Iceland ● Rockefeller Foundation ● Indiana University College of Arts & Sciences 1/22/2009 Pescosolido, Page 5 Original and Changing Impetus ● Resurgence in research and policy efforts on public stigma ● Recovery puzzle – WHO International Study of Schizophrenia (ISoS) ● 1989: Kleinman – single most important finding of mental health services research ● Individuals with schizophrenia have better outcomes in “developing” rather than “developed” countries ● FIC/NIH 2001 International Conference on Stigma: “Stigma and Global Health: Developing a Research Agenda” and following RFA ● Lancet 2006: particularly Weiss and Ramakrishna call for understanding stigma in different settings – because context reflects differences in social and cultural values, health programs, and behavior of health care personnel 1/22/2009 Pescosolido, Page 6 Limitations ● No overarching theoretical framework ● No or limited comparative studies of public stigma SGC-MHS: ● Theoretically-based ● Methodologically coordinated ● Multi-country ● Reliable global program 1/22/2009 Pescosolido, Page 7 Etiology and Effects of Stigma Model (EES) Expanded 1/22/2009 Pescosolido, Page 8 Participating Countries • 15 nations across a range of developmental levels o Includes Argentina, Bangladesh, Brazil, Bulgaria, Cyprus, Germany, Great Britain, Hungary, Iceland, Korea, New Zealand, Philippines, South Africa, Spain, and the USA • Additional countries to be included as special cases o Japan, Nepal • Other possible additions o China, Belgium 1/22/2009 Pescosolido, Page 9 Sampling • 15 national probability cross-sections (plus other special cases) fielded to date • Non-institutionalized adults (18+) • Multi-stage probability selection • N = 804 – 1,550 in each nation • Total N = 18,342 for combined dataset 1/22/2009 Pescosolido, Page 10 Procedures ● ● ● ● Face-to-Face Personal Interviews Two Part Interview Schedule 75-item substantive core Standard ISSP measures of socio-demographic attributes ● Fielded in 4 waves ● ● ● ● 3 7 3 2 1/22/2009 countries countries countries countries in in in in 2004 2005 2006 2007 Pescosolido, Page 11 Instrumentation ● Vignette-Based ● Modeled after the MacArthur Mental Health Module of the 1996 GSS (March 12-13, 2004 meeting in Madrid) ● Primary instrument drafted in English, translated into other languages with translation review ● Culturally tailored on vignettes, idioms, & common sources of MH care Pescosolido, B.A. and S. Olafsdottir. “The Logistics of Survey Implementation in a Comparative Study of Mental Illness: Issues and Resolutions in Translation Across Cultural Boundaries.” Paper presented at the International Conference on Survey Methods in Multinational, Multiregional, and Multicultural Contexts, Berlin, Germany, June 27, 2008. C. Boyer, B.A. Pescosolido, and T. Medina. “Issues in Understanding Mental Illness and Its Measurement: Global Problems, Local Manifestations and the Issue of Labeling.” Paper presented at the International Conference on Survey Methods in Multinational, Multiregional, and Multicultural Contexts, Berlin, Germany, June 27, 2008. 1/22/2009 Pescosolido, Page 12 Stigma Dimensions Thirty items tapping eight more-or-less distinct variants or dimensions of stigmatizing attitudes toward, and intolerance of, persons with mental health problems. 1. 2. 3. 4. Social Distance 5. Treatment-based Stigma Traditional Prejudice 6. “Outsider” Stigma Exclusion 7. Threat/Danger Negative Affect 8. Coercion 1/22/2009 Pescosolido, Page 13 Focus for Today ● Country variation: proportions of stigmatizing responses by stigma items for each country ● Additional analyses examining whether overall proportions are grossly/ systematically affected by “obvious” within-country factors 1/22/2009 Pescosolido, Page 14 Finding 1 ● With the exception of coercion into Tx, the hierarchy of stigma is clear – schizophrenia, depression and asthma .5 0 0 .5 1 People like X are unpredictable 1 Unwilling to work with X on a job Usa Arg Bra Bgr Cyp Deu Esp Gbr Hun Isl Bgd Kor Phl Nzl Zaf Schizophrenia Depression Usa Arg Bra Bgr Cyp Deu Esp Gbr Hun Isl Bgd Kor Phl Nzl Zaf Asthma Schizophrenia num: 1005 num: 1008 s gc BAR02a02_behavi or-1005_s dworkBD s gc BAR02a02_behavi or-1008_s tunpredB 1/22/2009 Depression Asthma Pescosolido, Page 15 Finding 2 ● Stigma is not stigma: ranges from low to quite high ● Significant variation across dimensions Lowest Levels High (over 50%) Treatment – Outsider; Secrecy; Less Intimacy Rejection; Affect; Inclusion Schizophrenia Vignette Outsider 1/22/2009 Lose Friends Limits Opps 0 .5 Proportion Stigmatizing 0 .5 Proportion Stigmatizing .5 0 1 Global Levels of Social Distance Schizophrenia Vignette 1 Global Levels of Community Stigma Schizophrenia Vignette 1 Global Levels of Treatment Stigma Not accepted Keep secret Embarrassed Afraid to tell Neighbor Socialize Childcare Friend Work Marry Pescosolido, Page 16 See: Pescosolido, B.A., S. Olafsdottir, J.K. Martin, and J.S. Long. 2008. "Cross-Cultural Issues on the Stigma of Mental Illness," Pp. 19-35 in J. ArboledaFlorez and N. Sartorius (eds.), Understanding the Stigma of Mental Illness: Theory and Interventions. London: John Wiley & Sons, Ltd. Finding 3 ● There is a good deal of cross-national variation in the culture of stigma ● Tends to be consistently high/low (but important exceptions) Exclusion Items 1 Schizophrenia Vignette Social Distance: Unwilling to have X as neighbor Cyp Schizophrenia Vignette Bgd .75 Usa Hun KorDeu Esp Zaf ArgBra Phl Isl Nzl Gbr .25 .5 __ 0 South _ America_ _Europe _ _ Asia_ 0 .5 __ X should not be allowed to teach children 1 Bgr Usa Arg Bra Bgr Cyp Deu Esp Gbr Hun Isl Bgd Kor Phl Nzl Zaf Countries Arranged by Continent 0 .25 .5 .75 1 X should not be allowed to supervise others at work Correlation = 0.97 1/22/2009 Pescosolido, Page 17 Finding 4 .75 1 Schizophrenia Vignette Bgd .5 Phl Cyp Esp Zaf Bgr Bra Hun Arg Kor Nzl Deu Gbr Usa Isl 0 ● There is little relationship with level of development; and where it does exist, it is in the direction opposite from the initial suggestions of the ISoS .25 X should not be hired for a job, even if qualified Exclusion and Level of Development 0 10000 20000 30000 40000 Real Gross Domestic Product per Capita (2003). Correlation = -0.63 1/22/2009 Pescosolido, Page 18 Finding 5 ● Tolerance, Health Funding (not number of psychiatrists/ physicians) are the most closely associated with lower levels of community-based stigma Social Distance and Social Capital Schizophrenia Vignette 1 .5 Gbr Usa Phl Cyp Isl Zaf Deu .25 0 0 .75 Usa .25 .5 .75 1 Isl Esp Deu Hun Bra Deu NzlUsa Gbr Isl 2.5 5 7.5 Public health expenditures as percentage of gross domestic product (2004). 0 Hun 0 Arg Esp Bgr Bra Arg Nzl Gbr Bgr Kor Cyp Zaf Kor .5 Bgd Phl .25 .75 Kor X should be forced by law to take RX meds Bgd 0 .25 .5 Hun X should not be hired for a job, even if qualified Zaf Bra Bgr Arg .75 Coercion and Health Care 1 1 Exclusion and Health Care Bgd Correlation = -0.81 10 0 2.5 5 7.5 Public health expenditures as percentage of gross domestic product (2004). Correlation = -0.89 Most people can be trusted Correlation = -0.67 SD_sgcLON04a-CtrustBBYclawdocB 1/22/2009 Pescosolido, Page 19 10 Finding 6 ● Personal contact and perceptions of the efficacy of Tx matter Traditional Prejudice and Contact Community Stigma and Treatment Schizophrenia Vignette Schizophrenia Vignette Deu Usa Isl Zaf Bra Arg Nzl Gbr Phl .75 Bgd Esp Usa BgrZaf Kor Arg Bra Hun Gbr .5 Esp Bgr Cyp Nzl Cyp Phl Bra Deu Arg Esp Bgr Hun Kor Gbr ZafUsa .25 Hun X's family better off if X's situation was kept secret .75 Kor .5 Phl Cyp .25 Deu Isl 0 0 Isl Nzl Bgd 0 X would do something violent or harmful toward others .75 .5 .25 Bgd 1 Threat/Danger and Contact 1 1 Schizophrenia Vignette 0 0 .25 .5 .75 Known someone who recieved treatment for a MH situation 1 .25 .5 .75 1 0 Known someone who recieved treatment for a MH situation Correlation = -0.66 .25 .5 .75 X's situation will improve with treatment Correlation = -0.85 Correlation = -0.68 1/22/2009 Pescosolido, Page 20 1 Finding 7 Coercion and Knowledge 1 Bgd .75 Phl Cyp Zaf Bgr Bra Esp .5 Kor Gbr Isl Usa Nzl Arg Hun Deu 0 .25 The context of care matters for endorsements X should be forced by law to go to a mental hospital ● Schizophrenia Vignette 0 .25 .5 .75 1 Cause is brain disease or disorder Correlation = 0.50 1/22/2009 Pescosolido, Page 21 Finding 8 ● The Knowledge Solution (proper attributions) is not promising for stigma reduction Schizophrenia Vignette .75 Cyp .5 Cyp Phl Bgd Bgr Usa Esp Hun Kor GbrIsl Kor Deu Bra Esp Zaf ZafNzl .25 Deu Bra Arg Hun Bgr Gbr Isl PhlNzl Usa 0 Bgd Arg 0 .25 .5 .75 If X let people know in TX, X would lose some friends 1 Treatment Stigma and Knowledge Schizophrenia Vignette 1 Social Distance and Knowledge 0 .25 .5 .75 1 0 Cause is brain disease or disorder Correlation = 0.55 1/22/2009 .25 .5 .75 1 Cause is genetic or inherited problem Correlation = 0.78 Pescosolido, Page 22 Finding 9 ● However, perceptions of competence are promising for stigma reduction Schizophrenia Vignette 1 Threat/Danger and Competence Schizophrenia Vignette 1 Negative Affect and Competence Schizophrenia Vignette 1 Traditional Prejudice and Competence .25 .5 .75 X is able to make decisions about managing own money Correlation = -0.68 1/22/2009 1 .75 Isl Bgd Bgr Hun Phl Usa Zaf Esp Bra Gbr Isl Nzl Bgr Zaf Esp Bra Hun Arg Phl .5 Deu Kor Arg Deu 0 .25 .75 .5 .5 0 Usa GbrNzlKor Bgd 0 .25 Deu 0 .25 Cyp Cyp Usa Gbr BgrNzlKor Bra Hun Phl Arg Zaf Isl Esp People like X are hard to talk to .75 Bgd X would do something violent or harmful toward self Cyp 0 .25 .5 .75 X is able to make decisions about managing own money Correlation = -0.73 1 0 .25 .5 .75 X is able to make decisions about managing own money Correlation = -0.60 Pescosolido, Page 23 1 Finding 10 ● Bangladesh (and sometimes Cyprus, Philippines) stand as outliers and call for additional investigation Schizophrenia Vignette 1 Coercion and Competence Schizophrenia Vignette 1 Negative Affect and Contact Schizophrenia Vignette 1 Traditional Prejudice and Contact .5 Deu Bgr Usa Isl Zaf Bra Nzl Arg 0 .25 .5 .75 Often see someone with serious MH problem in public Correlation = -0.20 1/22/2009 1 EspBra Gbr Kor .75 Isl Usa Nzl Bgd Arg Esp Hun BgrUsa Bra Zaf Kor Gbr Deu Nzl Deu Arg 0 Isl Hun 0 Gbr Cyp Phl Zaf Bgr .5 Hun Esp Phl Cyp .25 X should be forced by law to go to a mental hospital .75 Kor 0 .25 .5 Phl Cyp Bgd .25 .75 Being around X would make me feel uncomfortable Bgd 0 .25 .5 .75 Often see someone with serious MH problem in public Correlation = -0.53 1 0 .25 .5 .75 X is able to make decisions about managing own money Correlation = -0.58 Pescosolido, Page 24 1 Finding 11 ● In-group/out-group differences are not consistently important. Only fairly consistent in 3 countries: Germany, Great Britain and Hungary Schizophrenia & Depression Vignettes Usa Arg Bra Bgr Cyp Deu Esp Gbr Hun Isl Bgd Kor Phl Nzl Zaf Outgroup .5 0 .5 0 0 .5 1 People like X are unpredictable Schizophrenia & Depression Vignettes 1 Unwilling to work with X on a job Schizophrenia & Depression Vignettes 1 Unwilling to have X care for children Usa Arg Bra Bgr Cyp Deu Esp Gbr Hun Isl Bgd Kor Phl Nzl Zaf Ingroup Outgroup Usa Arg Bra Bgr Cyp Deu Esp Gbr Hun Isl Bgd Kor Phl Nzl Zaf Ingroup Outgroup num: 1003 num: 1005 num: 1008 s gc BAR03ab02_behavi or-1003_s dc hil dBD s gc BAR03ab02_behavi or-1005_s dworkBD s gc BAR03ab02_behavi or-1008_s tunpredB 1/22/2009 Ingroup Pescosolido, Page 25 Finding 12 ● Public responses for different groups tend to cluster by country 1 Schizophrenia & Depression Vignettes 1 Schizophrenia & Depression Vignettes gbr gbr hun bgr hun bgr .75 isl bgd bgd cyp kor kor hun hun bgr bgr phl phl deu esp esp gbr argisl deu zaf argisl zaf gbr nzl nzl bra bra usa usa 0 0 .25 deu deu usa arg .5 .5 phl phlzaf cyp cyp kor bra kor bra nzl nzl esp esp .25 .75 bgd 0 .5 1 People like X are unpredictable Schizophrenia & Depression Vignettes Unwilling to make friends with X People like X are unpredictable Usa Arg Bra Bgr Cyp Deu Esp Gbr Hun Isl Bgd Kor Phl Nzl Zaf Low Ed num: 1008 High Ed 0 5 10 15 20 Number of Psychiatrists per 100,000 (2005). Grey=Female Vignette Black=Male Vignette 25 0 5 10 Grey=Female Respondent Black=Male Respondent s gc BAR03ab02_ed-1008_s tunpredB 1/22/2009 15 Total expenditure on health as percentage of gross domestic product (2004). Correlation: Female=-0.41 Male=-0.44 Correlation: Female=-0.61 Male=-0.48 sgcSCATTER01a02V2_MI-FB-1118_psychi05BYstunpredB sgcSCATTER01b02_MI-GY-1224_hgdp04BYsdfriendBD Pescosolido, Page 26 Next Steps ● Effects of individual level characteristics ● Multi-level analysis 1/22/2009 Pescosolido, Page 27 Stepping Back: Limitations? Policy Directions? ● How much of a global look? Africa? China? ● Are attitudes behavior? Does it matter? ● Community-based stigma versus treatment-based stigma ● Where should our focus be? 1/22/2009 Pescosolido, Page 28