1. Recovery: The Experience and the Evidence by Patricia E. Deegan, Ph. D
Pat Deegan PhD & Associates, LLC © 2003
Copyright 2003 Patricia E. Deegan PhD

2. Pat How I am Seen By Others And Understand Myself
Before Being Diagnosed with Mental Illness
Values
Beliefs
&
Culture
Hopes
&
Dreams
Family
Pat
Spirituality
Friends
Class
Sexuality
Politics
Work

3. How I am Seen By Others After Being Diagnosed With Mental Illness
Culture
Friends
Mental
Illness
Beliefs &
Values
Sexuality
Hopes
and
Dreams
Spirituality
Work

4. Some of My Recovery Strategies
No street drugs
Tolerant environment
Relationships with people who cared about me and who I cared for
Spirituality and finding meaning in my suffering

5. Some of My Recovery Strategies
A sense of purpose and direction; daring to have a dream
Routine
Day at a time, hour at a time, minutes at a time
Study, learn and work

6. Recovery Strategies (cont’d)
A willingness to do psychotherapy to work through trauma history
Meeting others in recovery and learning not to be ashamed

7. Some of My Self-Care Strategies
How to avoid delusional thinking
How to cope with voices
How to cope with anxiety
How to rest, pace myself, sleep
The importance of physical exercise
Prayer, meditation
Sensory diet

8. Using your own voice
Some research suggests that using your own voice can make distressing voices go away.
Possible techniques include:
speaking to someone when voices start up
humming or singing quietly to yourself
counting under your breath
repeating a mantra to yourself such as I am safe, I am okay
reading out loud

9. Using Earplugs
Some people have found that using an earplug in one ear can greatly reduce or eliminate distressing voices.
In this technique you will need an earplug. They can be purchased at the drugstore.
Each time the voices start up, put earplug in left ear. See what happens. Sometimes the voices stop altogether. Sometimes they stop only when you take the earplug out. Sometimes you have to try the earplug in your right ear.
Copyright 2003 Patricia E. Deegan PhD

10. Using Earplugs (continued)
You will have to experiment with this technique to see what works for you. You may have to keep trying for a week or more in order to get results. The good news is that in some studies, over half the people who tried this got some relief, and for several people the voices disappeared completely for several months.

11. Listening to Headphones
Listening to talk or music through headphones can bring temporary relief.
The key to this technique is not how loud you play the music, but that you really like the music and actively listen to it.
Be Creative! Try listening to a sports broadcast or radio talk show. Some people have made tapes in which they describe really happy places and events in theirs lives.

12. IMMEDIATE EFFECTIVENESS AND LONG TERM USE OF TREATMENT IN 20 CASES
Nelson, H.E., Thraser, S., Barnes, T.R.E.
British Journal of Medicine
1991, 302, p.327
Copyright 2003 Patricia E. Deegan PhD

13. 92 research participants diagnosed with schizophrenia reported 350 individual coping techniques in addition to the 57 strategies that they were asked to rate

14. “From the foregoing it should appear obvious that schizophrenic patients are not simply passive victims of their illness.
On the contrary…patients can play an active role in the management of their illness, particularly in the containment of its symptoms.
The experience of schizophrenia is evidently a learning process in which patients make active attempts to master the illness and not have it dominate them.”
Vaughn Carr (1988). Patients’ techniques for coping with schizophrenia: An exploratory study. British Journal of Medical Psychology, 61,

15. Recovery
A new vision of people as active subjects as opposed to passively afflicted objects
A self-directed process of healing and transformation

16. Some of My Recovery Strategies (continued)
A willingness to take responsibility for myself and accepting that no one could do the work of recovery for me
Copyright 2003 Patricia E. Deegan PhD

17. The Restitution Narrative
I was well
I got sick
I sought professional help
I followed professional advice
I got well
I am back to myself

18. The Recovery Narrative
I was well, I got sick, the professionals did not make me better
What do I do now?
I can’t go back to who I once was. Who can I be and what can I do?
Transformation of self and discovery of valued social roles.
A testament to the resilient, struggling self

19. The Disease Centered Model
Professional Role
Hierarchical
Paternal
In-charge
Holds the important knowledge
Responsible for treatment
Disease is focus
Patient Role
Subservient
Obedient
Passive
Recipient of knowledge
Responsible for following treatment
Host of disease

20. Recovery is Person-Centered Model
Person’s Role
Personal power
Personal knowledge
Personal responsibility
Person in context of life is focus
Person is self-determining
Professional Role
Power sharing
Exchange information
Shared decision-making
Co-investigator
Professional is expert consultant on journey
The person-centered model marks a radical shift away from the disease centered model.
Power is shared in the relationship which ultimately means that the professional renounces the myth of absolute control. Since the professional really can’t control it all, it calls for new ways of partnering with patients and sharing decision making.
Copyright 2003 Patricia E. Deegan PhD

21. Recovery Oriented Practice
Recognize and end macro and micro-aggression
Handcuffed in back of cruisers
Restraint seclusion
Threats, bribes and coercion
Build respectful relationships
A new approach to establishing professional boundaries
A new approach to communication with clients both in writing, speaking, and non-verbal forms
Support client choice through shared decision making

22. Recovery: I am a Person, Not an Illness
Sexuality
Culture
Hopes
&
Dreams
Family
Pat
Spirituality
Friends
Class
Vulnerabilities
Politics
Work

23. 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

24. 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.

25. 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),

26. 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,

27. 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),
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),

28. 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,

29. 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,
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,

30. Longitudinal Studies: Recovery Rates

31. 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.

32. Ogawa et al. Study: What was the outcome for 140 people diagnosed with schizophrenia?
47% self supported defined as:
Has returned to a level of social functioning similar to that prior to illness
Maintains an independent social life with or without asking any advice from psychiatrists or acquaintances
Maintains a normal family life

33. Harding et al 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

34. 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

35. Comparison of Vermont and Maine Studies
MH system was based on rehabilitation
Expectation that people would become self-sufficient and work
Expectation that people would live in “real” housing
Maine
MH system was based on stabilization model
Expectation that people would remain on benefits for life and could not work
Expectation that people needed to be monitored/supervised in congregate housing

36. Outcomes for Vermont and Maine Research Participants Residential
Years with
Vermont
(%)
Maine
(%)
Domain
statistical difference
Hospital
60-76
13.0
50.0
Independent
60-71
46.4
25.6
Halfway House
60-63
6.2
0.3
Boarding Home
63-71
14.4
3.9

37. Outcomes for Vermont and Maine Research Participants Work
Years with
Vermont
Maine
Domain
statistical difference
average (%)
average (%)
Full-time
60-75
30.9
12.7
Part-time 60
7.9
1.8
Unemployed
74, 75, 77-79
41.3
60.2

38. World Health Organization’s International Study of Schizophrenia
Recovery from Psychotic Illness:
A year international follow-up study.
Harrison, Hopper, Craig, et.al.
British J. of Psychiatry (2001), 178, p

39. Conclusions and Clinical Implications
Striking heterogeneity in the long-term course of schizophrenia challenges conventional notions of chronicity and therapeutic pessimism
Evidence of late recovery in a significant minority of subjects should encourage innovative rehabilitation and employment programs in those with long-term illness, despite earlier failures.

40. Recovery Rates Panic Disorder: 80% Major Depression: 65%
Obsessive Compulsive Disorder: 60%
Bipolar Disorder: 80%
National Institute of Mental Health Council:
Health Care Reform for Americans With Severe Mental Illness
National Institute of Mental Health
1993

41. Using Empirical Data to Offer Hope
Long-term studies have consistently found that half to two-thirds of people diagnosed with major mental illness go on to a significant or complete recovery. Data shows that even in the second or third decade, a person can still go on to a complete recovery. I believe you can be one of the ones to recover.
I am here to support your journey of recovery.