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Lessons In Recovery & Resilience

Lessons In Recovery & Resilience. By Patricia E. Deegan Ph.D. Lesson #2. Recovery is Real. M. Bleuler Study. Sample size: 208 people Average length of follow-up: 23 years Rates of significant improvement or recovery for schizophrenia: 53% for multiple admission sample

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Lessons In Recovery & Resilience

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  1. Lessons In Recovery & Resilience By Patricia E. Deegan Ph.D.

  2. Lesson #2 Recovery is Real

  3. M. Bleuler Study • Sample size: 208 people • Average length of follow-up: 23 years • Rates of significant improvement or recovery for schizophrenia: • 53% for multiple admission sample • 68% for first admission sample English translation of the 1972 study: S.M. Clemens (1978) The Schizophrenic Disorders: Long-term Patient and Family Studies. New Haven, CT: yale University Press

  4. Huber et al. Study • Sample size: 502 people • Average length of follow-up: 22 years • Rates of significant improvement or recovery for schizophrenia: • 57% Huber, G., Gross, G., & Schüttler, R. (1979). Schizophrenie: Verlaufs und sozialpsychiatrische Langzeit unter suchü an den 1945 bis 1959 in Bonn hospitaliisierten schizophrenen Kranken. Monographien aus dem Gesamtgebiete der Psychiatrie. Bd. 21. Berlin: Springer:Verlag.

  5. Ciompi & Müller Study • Sample size: 289 • Average length of follow-up: 37 years • Rates of significant improvement or recovery: • 53% Ciompi, L. & Müller,C. (1976). Lebensweg und Alter der Schizophrenen: Eine katanmnestische Longzeitstudie bis ins senium. Berlin: Spring-Verlag Ciompi, L. (1980). Catamnestic long-term study on the course of life and aging in schizophrenics. Schizohrenia Bulletin,6(4), 606-618.

  6. Tsuang et al. Study • Sample size: 186 • Average length of follow-up: 35 years • Rates of significant improvement or recovery for schizophrenia: • 46% Tsuang, M.T., Woolson, R.F., & Fleming, J.A. (1979). Long-term outcome of major psychoses: 1. Schizophrenia and affective disorders compared with psychiatrically symptom-free surgical conditions. Archives of General Psychiatry, 36, 1295-1301.

  7. Harding et al. Study • Sample size: 269 • Average length of follow-up: 32 years • Rates of significant improvement or recovery for schizophrenia: • 62-68% Harding, C.M., Brooks, G.W., Ashikaga, T., Strauss, J.S., & Breier, A. (1987). The Vermont longitudinal study of persons with severe mental illness: 1. methodology, study, sample, and overall status 32 years later. American Journal of Psychiatry, 144(6), 718-726. Harding, C.M., Brooks, G.W., Ashikaa, T., Strauss, J.S., & Breier, A. (1987). The Vermont longitudinal study: II. Long-term outcome of subjects who retrospectively met the criteria for DSM-III schizophrenia. American Journal of Psychiatry, 144(6), 727-735.

  8. Ogawa et al. Study • Sample size: 140 • Average length of follow-up: 22.5 years • Rates of significant improvement or recovery for schizophrenia: • 57% Ogawa, K, Miya, M., Watarai, A., Nakazawa, M., Yuasa, S. & Utena, H. (1987). A long-term follow-up study of schizophrenia in Japan with special reference to the course of social adjustment. British Journal of Psychiatry, 151, 758-765.

  9. DeSisto et al. 1995 • Sample size: 269 • Average length of follow-up: 35 years • Rates of significant improvement or recovery for schizophrenia: • 49% DeSisto, M., Harding, C.M., Ashikaga, T., McCormick, R., & Brooks, G.W. (1995). The Maine and Vermont three-decade studies of serious mental illness: Matched comparison of cross-sectional outcome. British Journal of Psychiatry, 167, 338-342. DeSisto, M., Harding, C.M., Ashikaga, T., McCormick, R., & Brooks, G.W. (1995). The Maine and Vermont three decade studies of serious mental illness: II. Longitudinal course comparisons. British Journal of Psychiatry, 167, 338-342.

  10. Ogawa et al. Study: What was the outcome for 140 people diagnosed with schizophrenia? 74% were “self-supportive in terms of occupational status. 45% were married. 52% lived in their homes. 66% still used psychiatric services.

  11. Harding et al. 1987 Study • Study cohort of 269 people diagnosed with schizophrenia were bottom 19% in functional hierarchy at a state hospital • Most severely ill sample in world literature on recovery to date • Most in hospital 10+ years • Some could not use eating utensils • Some barely spoke

  12. Harding et al. 1987 Study • Recovery defined as four criteria: • Having a social life similar to others in the wider community • Holding a paying job or volunteering • Being symptom free • Being off of psychiatric medications • 62% of people diagnosed with schizophrenia met 3 of the 4 criteria

  13. Longitudinal Studies: Recovery Rates

  14. Lesson #3 People Diagnosed with Major Mental Disorders Are Resilient

  15. The Book of Margery Kempe1436

  16. Recovery Strategies “Idleness of mind and body left me at the mercy of my delusions. I began to lose all command of my imagination (when left in restraints and seclusion).”

  17. Recovery Strategies “Repeated experience of the falsehood of the promises made to me in delusion could succeed in making me relinquish altogether my attempts to comply.”

  18. Recovery Strategies “Keep your head to your heart and your heart to your head.”

  19. Recovery Strategies • I needed quiet, I needed tranquility; I needed security, (but) could not attain them. At the same time I needed cheerful scenes and lively images, to be relieved from the sad sighs and distressing associations of a madhouse;

  20. Recovery Strategies Continued • I required my mind and body be braced, the one by honest, virtuous and correct conversation, and the other by manly and free exercise.

  21. The Alleged Lunatics’ Friend Society1838 - 1863

  22. The Alleged Lunatics’ Friend Society: Issues • Bring an end to wrongful commitment to asylums • Improve asylum conditions • Secure patient rights such as writing letters, having visitors, and end to abuse of patients. • Peer support and legal aide

  23. Worcester State Hospital • Opened 1833 • Samuel Woodward first superintendent • Moral Treatment • Kindness • No Physical Restraint • Work • Exercise/Nutrition

  24. Moral Treatment and Recovery • Moral treatment and hope for recovery became synonymous • Some of Woodward’s recovery rates were exaggerated

  25. The 1881 Follow-Up Study • Survey of 211 patients who had been discharged as recovered through 1840. • 94 responses received (44.55%) • 51% of those discharged as recovered prior to 1840 remained well

  26. Recovery Follow-Up Study: 1881-1893 • Collected follow-up data on 1,157 people discharged from WSH who were discharged as recovered on their only admission or on their last admission • There were no data found for 173 people • Total n=984

  27. 1881-1893 Follow-Up Study • 317 people were well, had never returned to the hospital and were alive at the time of reply - as long as 40 years after discharge • 251 people remained well throughout their lives after discharge but were not alive at the time of survey • Total who remained well after discharge: 568 people

  28. 1881-1893 Study Results • 568 people out of a total of 984 remained well for the rest of their lives • Recovery rate for this study was 58%

  29. Interpretation: Evidence Against Recovery “…there can be no doubt that the public have been hitherto widely misled as to the meaning of the word ‘recovery,’ as used in the hospital reports, and as to the permanency of cures from insanity. Not a small number of patients who were discharged recovered in earlier reports of this hospital have many times since become a burden to the public or private purse by reason of a return to their malady.” WSH Annual Report XLIX(1881)

  30. Long-Term Follow-Up Studies

  31. Lesson #4 Do No Harm

  32. Nancy (1) What he said is, “You’ve got to face the fact. You’re not breastfeeding no more. You can never breast feed. You can never have any more kids. You should get through this. You are mental. You are going to have this disease forever. We don’t have any drugs that you can take care of your kids with. And I’m going to tell the state if you keep trying to

  33. Nancy (2) Breastfeed in this hospital. I’m going to tell the state that you’re child-abusing by making your baby breastfeed and you’re going to go back to the hospital.”

  34. “We envision a future when everyone with a mental illness will recover…” Vision Statement President’s New Freedom Commission Executive Summary July 2003

  35. “I entreat you to place yourself in the position of those whose suffering I describe, before you attempt to discuss what course is to be pursued toward them. Feel for them; try to defend them. Be their friends …”-John Thomas Perceval1840

  36. “More fundamental, however, than any technical reform, cure or prevention - indeed, a condition precedent to all these - is a changed spiritual attitude toward the insane. They are still human.”-Clifford Beers1907

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