THE MAJOR FINDINGS OF MENTAL HEALTH LITERACY RESEARCH AND WHY THEY MATTER

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Agatha Evans
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& Clinical Sciences Distinguished Teaching Professor

1 THE MAJOR FINDINGS OF MENTAL HEALTH LITERACY RESEARCH AND WHY THEY MATTER John Z. Sadler MD The Daniel W. Foster, M.D. Professor of Medical Ethics Professor of Psychiatry & Clinical Sciences Distinguished Teaching Professor The University of Texas Southwestern Medical Center Images, left to right, UT Southwestern North Campus, two views of new Parkland Memorial Hospital, Dallas, Texas, USA

2 OVERVIEW I. What is mental health literacy? II. Reviewing MH literacy research III. Relevance to patient care IV. Relevance to research V. Relevance to health policy VI. The challenge of MH literacy to psychiatry

3 TO ENGAGE YOUR ATTENTION, ANSWER THE FOLLOWING QUESTIONS: I. Approximately how long is the median delay for people in the USA to seek treatment for a DSM-IV anxiety disorder after the first onset of symptoms? A. Two days B. Two weeks C. Two months D. Two years E. Two decades (Show of hands for each)

4 TO ENGAGE YOUR ATTENTION, ANSWER THE FOLLOWING QUESTIONS: II. Which of the following is most likely to facilitate professional help-seeking for mental distress for a member of the public? A. Anti-stigma campaigns from professional organizations B. Prior positive experience with a MH professional C. Perceiving the mental distress problem as serious D. Confidence and trust in the mental health professions E. Positive attitudes towards help-seeking in general (Show of hands for each)

5 TO ENGAGE YOUR ATTENTION, ANSWER THE FOLLOWING QUESTIONS: III. Over the past 50 years, the perception by the public that mentally ill people are dangerous has: A. Stayed the same B. Significantly decreased C. Decreased slightly D. Significantly increased E. Increased slightly (Show of hands for each)

6 What is mental health literacy? I. Following ED Hirsch s groundbreaking educational concept of cultural literacy, a number of literacies have appeared: science literacy, health literacy, & mental health literacy. II. These literacies depend upon a common concept: background knowledge the prior knowledge you have, in order to make sense of and learn new things. For example: If you are reading about Grant and Lee in a text, you have to know who Grant and Lee are in order to make sense of the text. If you are learning about behavioral genetics, you need to know what genetics is before you can understand behavioral genetics. Hirsch ED: Cultural Literacy: What Every American Needs to Know (Boston: Houghton Mifflin 1987.

What is mental health literacy? III. Anthony F. Jorm, PhD, is a social scientist at the U. Melbourne, Australia and the world s foremost expert in MH literacy. Jorm s definition: IV.

7 What is mental health literacy? III. Anthony F. Jorm, PhD, is a social scientist at the U. Melbourne, Australia and the world s foremost expert in MH literacy. Jorm s definition: IV. Mental health literacy (MHL): Knowledge and beliefs about mental disorders which aid their recognition, management, or prevention Jorm is particularly interested in MHL as a tool to providing more access, utilization, and better MH care. Low MHL suggests (lack of) sufficient background knowledge and beliefs that interfere with recognition, management, and prevention of mental illness. MHL research is focused on ordinary people, the public and is a survey-driven research endeavor. Jorm, A. F. (2012). Mental health literacy: empowering the community to take action for better mental health. American Psychologist, 67(3), 231.

8 I. Will consider several aspects: A. Treatment seeking for mental disorders B. Recognition of mental illness in self and others C. Preferred helpers for mental distress D. Understanding of prevention, mental health services, and therapies E. What to do as a layperson when encountering a mentally ill individual F. Stigma research - negative/prejudicial attitudes held by others toward the mentally ill - self-stigma research important, but not reviewed here G. A substantial literature on MHL interventions is out there; will not be discussed today H. Will not discuss public (mis)understanding of forensic mental health Jorm, A. F. (2012). Mental health literacy: empowering the community to take action for better mental health. American Psychologist, 67(3), 231.

9 IA. Treatment Seeking for Mental Disorders Substantial, large-cohort studies are few Many small studies of MHL in particular countries, cultures, and ethnic groups, offering particular insights for those nationalities and/or ethnicities - do not review here Survey methods typically involve direct queries to respondents, presentation of case studies/problems with neutral language and asking about what respondents would do what they think is wrong what the cause of the problem is social distance desirability of association

IA. Treatment Seeking for Mental Disorders 1. Probably the best and largest study specifically on international MH literacy is the WHO World Mental Health Initiative study from 2007. a. >76,000 respondents age >18 b.

10 IA. Treatment Seeking for Mental Disorders 1. Probably the best and largest study specifically on international MH literacy is the WHO World Mental Health Initiative study from a. >76,000 respondents age >18 b. 15 countries worldwide c. Probability samples d. Response rates by country 45.9 % (France) to 87.7% (Colombia). Weighted average = 71.1% e. WHO s Composite International Diagnostic Interview (CIDI), using DSM-IV criteria Wang PS et al Delay and failure in treatment seeking after first onset of mental disorders in the WHO World Mental Health Survey Initiative. World Psychiatry 2007: 6:

11 IA. Treatment Seeking for Mental Disorders 1. Probably the best and largest study specifically on international MH literacy is the WHO World Mental Health Initiative study from f. Subjects queried for any mood, any anxiety, or any substance abuse disorder g. Did they ever talk to medical or any other helping professional h. Asked age of onset of disorder and age of first discussion with helping professional i. Probabilities of 1-year and 50 year delay from onset to professional contact computed w/ discrete time survival analysis. Wang PS et al Delay and failure in treatment seeking after first onset of mental disorders in the WHO World Mental Health Survey Initiative. World Psychiatry 2007: 6:

12 IA. Treatment Seeking for Mental Disorders

13 IA. Treatment Seeking for Mental Disorders 1. Probably the best and largest study specifically on international MH literacy is the WHO World Mental Health Initiative study from Comments on sample Wang WHO data a. Note confound in some countries, surveyed major depression rather than any mood disorder b. With one exception (Netherlands) for all of the countries here, all had fewer than half of their respondents seek treatment within one year, and more than a third did not seek treatment within a year. c. Mood disorders had generally shortest interval to treatment-seeking Wang PS et al Delay and failure in treatment seeking after first onset of mental disorders in the WHO World Mental Health Survey Initiative. World Psychiatry 2007: 6:

14 IA. Treatment Seeking for Mental Disorders 1. Probably the best and largest study specifically on international MH literacy is the WHO World Mental Health Initiative study from Comments on sample Wang WHO data d. Substantial improvements by 50 years across the board, with mood disorders/depression being the most likely to be treated. e. Median delay in years humbling; the minimum for a few being 1 year, and many having median delays measured in decades. f. USA performance at best average. Wang PS et al Delay and failure in treatment seeking after first onset of mental disorders in the WHO World Mental Health Survey Initiative. World Psychiatry 2007: 6:

15 IA. Treatment Seeking for Mental Disorders 3. More recently, Gulliver, Griffiths, & Christensen (2010) reviewed 22 studies about mental health help-seeking in young people aged years. a. Thematic analysis of 15 qualitative and 7 quantitative studies involving surveys, focus groups, & interviews. b. Identified key barrier themes and key facilitating themes in qualitative studies c. For quantitative studies, identified top rated barriers d. Mostly small studies (n< 60), but a few had enrollments in the hundreds and thousands. Gulliver A, Griffiths KM, Christensen H Perceived barriers and facilitators to mental health help-seeking in young people: A systematic review. BMC Psychiatry 10: 113.

Gulliver A, Griffiths KM, Christensen H. 2010.

16 Gulliver A, Griffiths KM, Christensen H Perceived barriers and facilitators to mental health help-seeking in young people: A systematic review. BMC Psychiatry 10: 113.

17 Gulliver A, Griffiths KM, Christensen H Perceived barriers and facilitators to mental health help-seeking in young people: A systematic review. BMC Psychiatry 10: 113.

Note that stigma and discomfort with MI label prevail again; followed by desire for self reliance on the one hand, and pessimism about MH care on the other.

18 Note that stigma and discomfort with MI label prevail again; followed by desire for self reliance on the one hand, and pessimism about MH care on the other. Gulliver A, Griffiths KM, Christensen H Perceived barriers and facilitators to mental health help-seeking in young people: A systematic review. BMC Psychiatry 10: 113.

19 IB. Public Perceptions of Mental Illness & Patients 1. Perhaps the most classic study of the past 20 years compares data from Star s 1950 survey of public conceptions of mental illness with a 1996 survey of comparable scope and content. (Phelan et al 2000). a. Shirley Star PhD, a sociologist with The National Opinion Research Center (NORC) at U Chicago, collected public opinion of 3529 citizens in b. Forerunner to the General Social Survey (GSS) also at the NORC, funded annually by the NSF and one of the primary sources of sociological data in the USA. c. Phelan et al s study compares Star s 1950 data with 1996 GSS data re: public opinion about MH and MI. Phelan JC, Link BG et al Public conceptions of mental illness in 1950 and 1996: What is mental illness and is it to be feared? J Health & Social Behavior 41(2):

20 IB. Public Perceptions of Mental Illness & Patients 1. Phelan et al (2000) d. Compared a random sample of Star s 1950 data (n=337) with a random subsample of 1996 GSS data (n=710->653). e. Four questions: (1) How would you describe a person who is mentally ill? (2) What do you think a mentally ill person is like? (3) What does a person like this do that tells you he is mentally-ill? (4) How does a person like this act? f. Coded responses into 97 semantic categories g. Collected various demographic data (gender, ethnicity, education, income, community size, age) Phelan JC, Link BG et al Public conceptions of mental illness in 1950 and 1996: What is mental illness and is it to be feared? J Health & Social Behavior 41(2):

21 IB. Public Perceptions of Mental Illness & Patients 1. Phelan et al (2000) h. Responses for both data sets were coded by two master s level psychologists by type of psychopathology (psychosis, anxiety/depression, social deviance, mental deficiency/cognitive impairment, other non-psychotic). Inter-rater reliability kappas ranged from.89 to.96. i. Similar analysis for perceptions of violence and other frightening characteristics j. Then compared 1950 Star and 1996 Phelan et al data Phelan JC, Link BG et al Public conceptions of mental illness in 1950 and 1996: What is mental illness and is it to be feared? J Health & Social Behavior 41(2):

22 IB. Public Perceptions of Mental Illness & Patients 1. Phelan et al (2000) ***= p <.001 CORRESPONDENCE OF CATEGORIES OF RESPONDENT S DESCRIPTIONS OF MI Category of psychopathology Star 1950 GSS 1996 Psychosis 40.7% 34.9% Anxiety/depression 48.7% 34.3% *** Social deviance 7.1% 15.5% *** Mental deficiency/cognitive impairment 6.5% 13.8% *** Other non-psychotic 7.1% 20.1% *** Phelan JC, Link BG et al Public conceptions of mental illness in 1950 and 1996: What is mental illness and is it to be feared? J Health & Social Behavior 41(2):

23 IB. Public Perceptions of Mental Illness & Patients 1. Phelan et al (2000) *= p <.05 **= p <.01 PERCEPTIONS OF VIOLENCE AND OTHER FRIGHTENING CHARACTERISTICS Type of perception Star 1950 GSS 1996 % respondents mentioning violent themes 7.2% 12.1% * Mean number of mentions of other frightening characteristics (extreme/excessive, unstable, unpredictable, uncontrolled, irrational) % respondents whose descriptions were classified as violent psychosis * 6.8% 12.4% ** Phelan JC, Link BG et al Public conceptions of mental illness in 1950 and 1996: What is mental illness and is it to be feared? J Health & Social Behavior 41(2):

IB. Public Perceptions of Mental Illness & Patients 1. Phelan et al (2000) i. The authors also found the % perception of violence by MI increased from 12.

This in the promotional context of the Decade of the Brain and the increased attention to stigma by the mental health professions of the time.

24 IB. Public Perceptions of Mental Illness & Patients 1. Phelan et al (2000) i. The authors also found the % perception of violence by MI increased from 12.7 in 1950 to 31% in p <.05 j. The data suggest that negative perceptions of mental illness increased over the 46 years following Star s study. k. This in the promotional context of the Decade of the Brain and the increased attention to stigma by the mental health professions of the time. Phelan JC, Link BG et al Public conceptions of mental illness in 1950 and 1996: What is mental illness and is it to be feared? J Health & Social Behavior 41(2):

25 IB. Public Perceptions of Mental Illness & Patients 2. What about more contemporary studies? a. Angermeyer et al (2006) review b. 33 national, 29 local/regional studies, mostly from Europe, over past 15 years. c. Response rates for personal interview surveys varied between 64 and 98%. d. Sample sizes: low of 90, high of e. Methods included responses to case vignettes, responses to diagnostic categories, queries about particular attitudes, such as help-seeking, or opinions about topics, such as efficacy of psychiatric medications. Angermeyer MC, Dietrich S Public beliefs about and attitudes toward people with mental illness: A review of population studies Acta Psychiatr Scand 113:

26 IB. Public Perceptions of Mental Illness & Patients 3. Angermeyer et al (2006) review, major conclusions: a. Failure to recognize psychopathology. A substantial portion of the public cannot recognize specific mental disorders. They tend to attribute behavior to stress and recommend psychological interventions. b. Mentally ill need help. The majority of the public consider people with MI in need of help. A substantial minority fear people with MI and view them as unpredictable and dangerous. c. Different disorders generate different social appraisals. From most rejected to least, addiction > schizophrenia > mood/anxiety disorders. (See also Martin et al J Health & Soc Behavior 2000, (41) ) Angermeyer MC, Dietrich S Public beliefs about and attitudes toward people with mental illness: A review of population studies Acta Psychiatr Scand 113:

27 IB. Public Perceptions of Mental Illness & Patients 3. Angermeyer et al (2006) review, major conclusions: d. Demographics. Negative attitudes toward MI positively associated w/ age; inversely associated with educational attainment. e. Contact increases acceptance. The more contact a person has with the mentally ill, the more accepting the attitudes. f. Trend analyses are scarce. Few studies address how attitudes are changing over time. g. Non-Westerners are more blaming of individuals w/ MI. This was a weak trend in the data. Angermeyer MC, Dietrich S Public beliefs about and attitudes toward people with mental illness: A review of population studies Acta Psychiatr Scand 113:

28 IB. Public Perceptions of Mental Illness & Patients 3. Angermeyer et al (2006) review, major conclusions: h. Interventions differentially effective. Educational programs about recognizing depression tended to promote more change in attitudes than programs focusing on changing attitudes toward medications. i. Few studies examine relationships between attitudes and behavior. j. Evidence is equivocal about mental disorders are brain disorders campaigns. Evidence about these efforts to change public opinion is mixed. - Review by Read et al (2006 Acta Psychiatr Scand 14: ) found public prefers psychosocial to biogenetic explanation of MI. Angermeyer MC, Dietrich S Public beliefs about and attitudes toward people with mental illness: A review of population studies Acta Psychiatr Scand 113:

29 IC. Public Understanding of MI in self and others 1. Remember Wang et al WHO survey 2. Jorm 2012 review: a. Worldwide community surveys consistently show many people cannot correctly recognize mental disorders in self and others. b. Pescosolido et al (2008): 58% correctly identify child w/ depression, most all other disorders in children poorly recognized. c. Adolescents have more difficulty than young adults in recognizing psychopathology in self; if they do, they tend to be more open to help-seeking and identify counselors and psychologists as helpful. Jorm, A. F. (2012). Mental health literacy: empowering the community to take action for better mental health. American Psychologist, 67(3), 231.

30 IC. Public Understanding of MI in self and others 1. Remember Wang et al WHO survey 2. Jorm 2012 review: d. Comfort with mental health care associated with having received mental health care. e. Labeling a mental disorder with a non-clinical label (stress, problems in living) was associated with selfreliance and less help-seeking from MH professionals. Jorm, A. F. (2012). Mental health literacy: empowering the community to take action for better mental health. American Psychologist, 67(3), 231.

31 ID. Knowledge of MH services/treatments 1. Jorm 2012 review: a. Multiple studies indicate that the public tends to prefer help from family, friends over counselors, PCPs, ministers, which are preferred over psychologists, which are preferred over psychiatrists. b. Psychiatric medications commonly viewed with suspicion; more harmful than helpful. At the same time, they are also viewed as no more effective than diet or vitamins, though these trends appear to be weakening over time. c. Commonly endorsed public strategies to deal with anxiety/depression are alcohol, pain relievers, physical activity, help from family/friends, time off work, vacations. Jorm, A. F. (2012). Mental health literacy: empowering the community to take action for better mental health. American Psychologist, 67(3), 231.

32 ID. Knowledge of MH services/treatments 1. Jorm 2012 review: d. A survey in 6 European countries found that about 1/3 of adults believe that professional MH care is worse than or equal to no help at all. (ten Have et al Social Psychiatry & Psychiatric Epidemiology (45) ). Jorm, A. F. (2012). Mental health literacy: empowering the community to take action for better mental health. American Psychologist, 67(3), 231.

33 IE. Knowledge of MH Prevention 1. Jorm 2012 review: a. Little known in this area of MHL research b. Two studies identified the following set of public beliefs about prevention of MI: - stable relationships - enjoyable leisure - family support - disclosing oneself to a confidante - sleep, exercise, avoiding drugs - meaningful activities Jorm, A. F. (2012). Mental health literacy: empowering the community to take action for better mental health. American Psychologist, 67(3), 231.

34 IF. What to do if encountering an MI person is 1. Jorm 2012 review: a. Little work in this area other than b. Jorm s work on mental health first aid - Australian surveys of young people and parents - Biggest gap is suicidal ideas should be kept to oneself - Talking about MH issues and suicide in general harmful - Encountering a suicidal classmate, many (not majority) would not tell anyone about it. Jorm, A. F. (2012). Mental health literacy: empowering the community to take action for better mental health. American Psychologist, 67(3), 231.

35 IF. What to do if encountering an MI person 1. Jorm 2012 review: c. Another survey of young Australians (ages 13-28) examining how one should respond to a friend or family member with an MH problem, 80% endorsed these: - listen to the person - encourage physical activity - use friends to cheer up the person - stay busy to keep mind off problems d. Above study, only 58% endorsed seeking professional help, and only 38% recommended inquiring about suicidal ideas. Jorm, A. F. (2012). Mental health literacy: empowering the community to take action for better mental health. American Psychologist, 67(3), 231.

IF. What to do if encountering an MI person 1. Jorm s group Mental Health First Aid Manual Key Elements (for your interest) recommend: a. Approach the person b. Assess the situation c.

36 IF. What to do if encountering an MI person 1. Jorm s group Mental Health First Aid Manual Key Elements (for your interest) recommend: a. Approach the person b. Assess the situation c. Assist with any crisis d. Listen nonjudgmentally e. Offer support f. Offer information g. Encourage the person to get professional help h. Encourage other supports (social, family, self-help) Kitchener BA, Jorm AF, Kelly CM Mental Health First Aid Manual., available from authors

37 IG. Further (brief) insights from MH stigma research 1. Pescosolido (2013) reviewed General Social Survey data for the years following the Phelan 2000 study discussed earlier. a. These studies were five GSS modules from involving thousands of subjects b. Organized findings into three finding sets : i. Set 1: Public openness to disclosure and recognition/response to mental illness problems. ii. Set 2: Stigma iii. Set 3: State of the science Pescosolido BA The public stigma of mental illness: what do we think; what do we know; what can we prove? Journal of Health and Social Behavior 54 (1): 1-21.

38 IG. Further (brief) insights from MH stigma research now 1. Pescosolido (2013) reviewed General Social Survey data a. Set 1: Public openness to disclosure and recognition/response to mental illness problems. i. The Good News: Over the long haul, the public has becomes somewhat more sophisticated and perhaps more open to disclosure, recognition, and response about mental health problems. ii. Neurosci/genetic understandings of mental illness endorsed by public for severe disorders like schizophrenia. iii. Less robust endorsement of neurogenetic causes for other disorders. Pescosolido BA The public stigma of mental illness: what do we think; what do we know; what can we prove? Journal of Health and Social Behavior 54 (1): 1-21.

39 IG. Further (brief) insights from MH stigma research 1. Pescosolido (2013) reviewed General Social Survey data a. Set 1: Public openness to disclosure and recognition/response to mental illness problems. iv. Majority have heard of ADHD and the majority consider it real disorder. v. Significant, but small improvements in -Adults more able to self-identify sx of MI - More willing to disclose MI problems - 4x willingness to discuss w/ family, friends - BUT no change in avoidance or tx seeking Pescosolido BA The public stigma of mental illness: what do we think; what do we know; what can we prove? Journal of Health and Social Behavior 54 (1): 1-21.

40 IG. Further (brief) insights from MH stigma research with, 1. Pescosolido (2013) reviewed General Social Survey data a. Set 2: Stigma i. The bad news: stigma is alive and well with relatively stable gradients, little change over time, and surprising adult-child comparisons. ii. 2x 8x differences in adults re: social distance compared to troubled person. (Social distance: move next door to, make friends with, work with on job, marry into family) iii: Children: 2x-8x more social distance than asthmatic children Pescosolido BA The public stigma of mental illness: what do we think; what do we know; what can we prove? Journal of Health and Social Behavior 54 (1): 1-21.

IG. Further (brief) insights from MH stigma research 1. Pescosolido (2013) reviewed General Social Survey data a. Set 3: State of the science i. Vignette responses vs.

41 IG. Further (brief) insights from MH stigma research 1. Pescosolido (2013) reviewed General Social Survey data a. Set 3: State of the science i. Vignette responses vs. diagnostic label responses: still about equal, still not good ii. NAMI s MI as disease as any other : Improved understanding of MI, no change in stigmatizing attitudes iii. Genetic attributions to MI increased stigma, increased pessimism on treatment efficacy iv. No consistent sociodemographic correlations (See also Silton et al J Nerv Ment Dis 199: ) Pescosolido BA The public stigma of mental illness: what do we think; what do we know; what can we prove? Journal of Health and Social Behavior 54 (1): 1-21.

42 The challenges of MHL studies to psychiatry why they matter I. These studies raise serious questions about research and intervention priorities in mental health. A. Regardless of the quality of our treatments, if most people in need avoid us, we are failing, and miserably, in our public health mission. B. The results indicate that intervention funding priorities should be re-aimed at education and public awareness efforts, shifting away from research on new magic bullets that many, perhaps most, people avoid and distrust. II. What do these studies tell us about the people we see, and DON T see? A. Presumably the people we see are a mix of early, middle, and late treatment seekers; more ill, more desperate, perhaps friendlier, or even too friendly to, psych medications

43 The challenges of MHL studies to psychiatry why they matter II What do these studies tell us about the people we see, and DON T see? A. Presumably the people we see are a mix of early, middle, and late treatment seekers; more ill, more desperate, perhaps friendlier, or even too friendly to, psych medications B. Who are the people we don t see? What happens to them? Do they have different courses of illness? How can we reach them? C. One wonders about the interaction between our treatment seekers and other health-literacy questions 1. Do they have unrealistic expectations about medications? 2. Do different patients seek psychologists and psychiatrists?

44 The challenges of MHL studies to psychiatry why they matter III What do these studies tell us about the people we see, and DON T see? D. The public acceptance of psychosocial formulations is higher, and perhaps much higher than biomedical formulations. Why aren t we capitalizing on this? IV. What does the MHL research tell us about psychiatry? A. Psychiatry has a very serious public image problem. B. The bar for our public virtue must be higher than it has been. C. We should eat more humble pie and learn from our colleagues in psychology and social work (though there is room for improvement for them too, according to MHL!).

45 The challenges of MHL studies to psychiatry why they matter IV. What do these studies tell us about what to do? A. Address stigma amongst public & professionals. B. For educational efforts, link mental disorders to life stressors and failures of ordinary coping, (e.g., not simply biological/constitutional illnesses). 1. Psychosocial treatments as scientific/technological enhancements of ordinary coping C. Every psychiatrist & MH clinician should aspire to be a model of professional virtue, a paragon of the community. D. Place mental health first aid and the signs & symptoms of mental illness in primary and secondary education science & health courses. MHL as primary health-ed competency. E. Engage and develop peer role models for accepting help F. Greatly expand funding for MHL research and intervention

46 Discussion and thanks for your attention UT Southwestern Program in Ethics in Science & Medicine:

National Surveys of Mental Health Literacy and Stigma and National Survey of Discrimination and Positive Treatment

National Surveys of Mental Health Literacy and Stigma and National Survey of Discrimination and Positive Treatment A report for Prepared by Dr Nicola Reavley, Tiffany Too and Michelle Zhao June 2015 Acknowledgements