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From armchair to wheelchair: how patients with a locked-in syndrome integrate bodily changes in experienced identity.
[locked-in syndrome]
Different
sort
of
people
are
interested
in
personal
identity
.
Philosophers
frequently
ask
what
it
takes
to
remain
oneself
.
Caregivers
imagine
their
patients
'
experience
.
But
both
philosophers
and
caregivers
think
from
the
armchair
:
they
can
only
make
assumptions
about
what
it
would
be
like
to
wake
up
with
massive
bodily
changes
.
Patients
with
a
locked-
in
syndrome
(
LIS
)
suffer
a
full
body
paralysis
without
cognitive
impairment
.
They
can
tell
us
what
it
is
like
.
Forty
-
four
chronic
LIS
patients
and
20
age-matched
healthy
medical
professionals
answered
a
15
-
items
questionnaire
targeting
:
(
A
)
global
evaluation
of
identity
,
(
B
)
body
representation
and
(
C
)
experienced
meaning
in
life
.
In
patients
,
self-reported
identity
was
correlated
with
B
and
C
.
Patients
differed
with
controls
in
C
.
These
results
suggest
that
the
paralyzed
body
remains
a
strong
component
of
patients
'
experienced
identity
,
that
patients
can
adjust
to
objectives
changes
perceived
as
meaningful
and
that
caregivers
fail
in
predicting
patients
'
experience
.
Diseases
Validation
Diseases presenting
"meaning in life"
symptom
locked-in syndrome
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