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Schizophrenia, mental health literacy, and the internet

Schizophrenia, mental health literacy, and the internet. Heinz Katschnig, MD Professor and Chairman Department of Psychiatry, Medical University of Vienna Director Ludwig Boltzmann Institute for Social Psychiatry Vienna, Austria.

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Schizophrenia, mental health literacy, and the internet

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  1. Schizophrenia, mental health literacy, and the internet Heinz Katschnig, MD Professor and Chairman Department of Psychiatry, Medical University of Vienna Director Ludwig Boltzmann Institute for Social Psychiatry Vienna, Austria

  2. A. The poor mental health literacy in relation to schizophrenia and the consequences of public misconceptions B. The chances of using the internet to improve the poor mental health literacy in relation to schizophrenia

  3. Mental health literacy “Knowledge and beliefs about mental disorders which aid their recognition, management or prevention". the ability to recognise specific disorders or different types of psychological distress; knowledge and beliefs about risk factors and causes; knowledge and beliefs about self-help interventions; knowledge and beliefs about professional helpavailable; attitudes which facilitate recognition and appropriate help-seeking; and knowledge of how to seek mental health information Jorm1997

  4. What Schizophrenia is 1% Life time prevalence, 20-50% chronic course (depression 16% life time prevalence! 10-20% chronic) Early age at onset: 15-30 years, mainly 18-25 Course variable: 20% very good, 20% very bad Cognitive and affective disturbances are core symptoms > uneasiness, communication disturbances dominate Hallucinations and delusions are accessory symptoms (are possible, but not specific for schizophrenia, also occur in many other psychiatric disorders, and even in healthy persons)

  5. What schizophrenia is not(but is the content of the public misperception) Split personality (media!!!, metaphoric use) Dominated by hallucinations and delusions („craziness“) More violent than general population Chronic Untreatable

  6. 81 % had heard of schizophrenia of these: 29% think that schizophrenia means “split personality” The meaning of the word „schizophrenia“ in the general population Grausgruber, Meise, Katschnig, Schöny, Fleischhacker: Population Survey Austria 1998

  7. 29% “schizophrenia = split personality” but 43% of high school /university graduates (including doctors) think that schizophrenia means“split personality” this means that nearly half of the opinion leaders have this wrong conception - they are “computer literates”, but “mental health illiterates” The meaning of the word „schizophrenia“ in the general population Grausgruber, Meise, Katschnig, Schöny, Fleischhacker: Population Survey Austria 1998

  8. Case vignette psychosis – Which is the correct treatment? **) Grausgruber et al 1998 *) Katschnig et al 1991

  9. Consequences of the negative misconception of schizophrenia Stigma, discrimination and exclusion Delayed helpseeking or no helpseeking at all – not before catastrophe occurs Not accepting diagnosis – compliance with efficacious treatmetns is low

  10. Social distance towards persons suffering from schizophrenia In general favourable attitude 81% “should live in society” but personal contact would be avoided (‘not in my backyard’ syndrome): “would not accept as ….. ” 90% babysitter, 80% boss, 63% employee, 67% marrying a family member

  11. Conclusions A 1. Mental health literacy is low in relation to what schizophrenia is, what its possible causes are, which treatments are effective 2. Low mental health literacy has detrimental effects: stigma, discrimination, exclusion, avoidance/delay of help seeking, low compliance

  12. A. The poor mental health literacy in relation to schizophrenia and the consequences of public misconceptions B. The chances of using the internet to improve the poor mental health literacy in relation to schizophrenia

  13. Sources of mental health information used by the general public • Personal experience of someone with a mental disorder • Relatives and friends • Press, television and cinema dramas (bias towards negative aspects!) • Books • Internet?

  14. Use of the internet for health topics • Internet use is very common today – already in 2000/2001 46% of the German population used the internet • Controversy about frequency of the use of the internet for health topics: estimates vary between 3% and 55% in one year • In 2000/2001 42% of psychiatric in-patients in a german hospital said that they had used the internet (50% health topics, 30% mental health topics) -with the early age of onset of schizophrenia these patients belong to the „internet generation“!

  15. Who wants information on schizophrenia? 86% say „no thank you, don‘t want to know more about schizophrenia“ (General population in Austria) Internet is therefore probably not useful for correcting public misconceptions Clinical experience: Patients and family members are looking for information, often they do so on the internet

  16. Internet as a source for mental health information: Advantages (+) and risks (-) • Because of fear of stigma anonymity is essential ++ • Cheap + • Up-to-date + • Time independent („professionals have too little time“) + • Understandability + • Road to self-help/peer communication + • Active participation in making health /life style decisions + • Road to services and to self-help groups + • Empowerment + • Change of professional/client relationship + • Sceptical/ negative attitude by professionals - • Danger of inadequate self-treatment - • Quality of the information ?

  17. There are only two studies on the quality of web based information on schizophrenia, checking for (1) Accountability (2) Readability (3) Quality of content Halifax/Canada (English web pages 2001) :Kisley St, Ong G, Takyar A (2003): A survey of web based information on the treatment of schizophrenia and ADHD: Australian and New Zealand Journal of Psychiatry 37, 85-91 Vienna/Austria (German web pages 2004) :Schrank, B, Seyringer M-E, Berger P, Katschnig H, Amering M: Schizophrenia and Psychosis on the Internet (2005), submitted for publication

  18. Method: assuming that someone would look for information on schizophrenia on search engines Halifax: June to September 2001 Evaluation of the 20 most highly ranked english pages on the treatment of schizophrenia identified by the 5 then most popular www search engines (MSN, AOL, Yahoo, Lycos, Excite) Vienna: November 2004Evaluation of the first 100 hits each for „schizophrenia“ or „psychosis“ on German Google sites (N after corrections for overlap = 161)

  19. Assessment Halifax: Several published scales providing scores Vienna: 2 psychiatrists and 2 psychiatrists in training

  20. Results Halifax (2001) Accountability 57% authors specified 25% references given/hyperlinked

  21. Results Vienna (2004) Accountability 77% authors specified 44% hyperlinked

  22. Results Halifax (2001) Readability/Navigability 97% Headings present 2% Diagrams present 73% Advertisments absent High reading level was required – mean Flesch-Kincaid reading grade was 11,5 (recommended: below 8)

  23. Results Vienna (2004)Readability/Navigability 11% More than 5 clicks necessary to arrive at schizophrenia specific information or to change topic (e.g. from diagnosis to treatment)

  24. Results Halifax (2001)Quality of information 1 (agreement between web sites and systematic reviews) 55% Use of antipsychotic medication 6% Dosage 53% Mention of new antipsychotics 50% Indivual education and support 47% Family interventions 19% Cognitive behavioral therapy 14% Assertive community treatment

  25. Results Halifax (2001) Quality of information 2 43% Recommendation to clarify with a health care professional 14% Information changed during last month (= recency of information)

  26. Results Vienna (2004) Quality of information 1 25% Clinical picture comprehensive 16% Clinical picture fragmented 22% Theories of causation comprehensive 14% Theories of causation selective 35% Psychopharmacotherapy 26% Psychotherapy 22% Sociotherapy 4% Alternative Treatments

  27. Results Vienna (2004) Quality of information 2 45% Evidence based content (examples for not evidenced based content: wrong cause, wrong treament – e.g. wrong medication, electroconvulsive therapy, „split personality“ very rare: <3%, only in encyclopedias!) 5% Esoteric content 4% „Antipsychiatric“ content

  28. Results Vienna (2004) Quality of information 3 12% forum or chatroom available, 8% possibility to interact with professional (2/3 free of charge, 1/3 for pay)

  29. Conclusions B1. The general public is not interested in knowing more about schizophrenia, internet is not useful for fighting stigma2. For patients and family members the internet might be useful for increasing acceptance of the diagnosis, compliance and cooperation with services3. Quality of information needs improvement

  30. Conclusions B (cont.)4. Ways for improving the quality of internet searches Initiatives to ensure quality of information on the internet („upstream filtering“) - relies on voluntary codes of conduct Provide „web gateways“: users are directed to sites that have been evaluated by authoritative panels – but proliferation of web sites and discrepant views on schizophrenia makes this difficult Dissemaination of criteria to help internet users select information on their own (manual „downstream filtering“), e.g. DISCEARN questionnaire by Griffiths and Christensen 2000

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