Transcript Recovery by Patricia E. Deegan, Ph.D.

Recovery:
The Experience and the
Evidence
by Patricia E. Deegan, Ph.D.
http://www.patdeegan.com
Pat Deegan PhD & Associates, LLC © 2003
How I am Seen By Others And Understand Myself
Before Being Diagnosed with Mental Illness
Pat
How I am Seen By Others After Being
Diagnosed With Mental Illness
Mental
Illness
Beliefs &
Values
Work
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

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
Recovery Strategies (cont’d)

A willingness to do psychotherapy to work
through trauma history

Meeting others in recovery and learning
not to be ashamed
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
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
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.
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.
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.
IMMEDIATE EFFECTIVENESS AND
LONG TERM USE OF TREATMENT IN
20 CASES
Patients
Attempting
Treatment
One or
More
Treatment
17
Ear Plug Subvocal
Counting
Tape
Player
8
13
15
Patients
reporting some
immediate
beneficial effects
16
8
5
14
Patients using
treatment long
term
11
4
2
7
Nelson, H.E., Thraser, S., Barnes, T.R.E.
British Journal of Medicine
1991, 302, p.327
92 research participants diagnosed with
schizophrenia reported 350 individual coping
techniques in addition to the 57 strategies that
they were asked to rate
 Passive diversion
(listening to music)
 Activity
(walking)
 Active diversion
(playing an
instrument)
 Change of
environment
(van ride)
 Increase
socialization
(phone call)
 Inactivity
(waiting)
 Postural changes
(lying down)
 Suppression
of ideas
 Decrease
socialization
(being alone)
 Shifting attention
(think about
something else)
 Problem solving
“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, 339-352.
Recovery

A new vision of people as active subjects
as opposed to passively afflicted objects

A self-directed process of healing and
transformation
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

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
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
The Disease Centered Model
Professional Role
1. Hierarchical
2. Paternal
3. In-charge
4. Holds the important
knowledge
5. Responsible for
treatment
6. Disease is focus
Patient Role
1. Subservient
2. Obedient
3. Passive
4. Recipient of
knowledge
5. Responsible for
following treatment
6. Host of disease
Recovery is Person-Centered
Model
Person’s Role
1. Personal power
2. Personal
knowledge
3. Personal
responsibility
4. Person in context
of life is focus
5. Person is selfdetermining
Professional Role
1. Power sharing
2. Exchange
information
3. Shared decisionmaking
4. Co-investigator
5. Professional is
expert consultant on
journey
Recovery Oriented Practice

Recognize and end macro and microaggression




Build respectful relationships



Handcuffed in back of cruisers
Restraint seclusion
Threats, bribes and coercion
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
Recovery: I am a Person, Not an Illness
Pat
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
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.
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.
Tsuang et al. Study


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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.
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.
Ogawa et al. Study


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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.
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.
Longitudinal Studies:
Recovery Rates
70%
60%
50%
40%
30%
20%
10%
0%
1972
1975
1976
1979
1987
1987
1995
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.

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
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

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
Comparison of Vermont and
Maine Studies

Vermont

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
MH system was
based on
rehabilitation
Expectation that
people would
become selfsufficient 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/supervise
d in congregate
housing
Outcomes for Vermont and
Maine Research Participants
Residential
Domain
Years with
statistical difference
Vermont
(%)
Maine
(%)
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
Outcomes for Vermont and
Maine Research Participants
Work
Domain
Years with
Vermont
Maine
statistical difference average (%) average (%)
Full-time
60-75
30.9
12.7
Part-time
60
7.9
1.8
74, 75, 77-79
41.3
60.2
Unemployed
World Health Organization’s
International Study of
Schizophrenia
Recovery from Psychotic Illness:
A 15-25 year international follow-up study.
Harrison, Hopper, Craig, et.al.
British J. of Psychiatry (2001), 178,
p. 506-517
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.
Recovery Rates

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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
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.