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Research
in
Developmental
Disabilities
59
(2016)
166–175
Contents
lists
available
at
ScienceDirect
Research
in
Developmental
Disabilities
Scale
of
emotional
development—Short
Tanja
Sappoka,∗,
Brian
Fergus
Barrettb,
Stijn
Vandeveldec,
Manuel
Heinricha,
Leen
Popped,
Paula
Sterkenburge,
Jolanda
Vonkf,
Juergen
Kolbb,
Claudia
Claesd,
Thomas
Bergmanna,
Anton
Doˇ
seng,
Filip
Morissed
aKönigin-Elisabeth-Herzberge
Hospital,
Department
of
Psychiatry,
Psychotherapy
and
Psychosomatics,
Berlin,
Germany
bSt.
Lukas-Klinik,
Specialized
Clinic
for
Individuals
with
Intellectual
Disabilities,
Department
of
Psychiatry
and
Psychotherapy,
Liebenau,
Germany
cGhent
University,
Department
of
Special
Needs
Education,
Ghent,
Belgium
dUniversity
College
Ghent,
Faculty
of
Education,
Health
and
Social
Work,
Ghent,
Belgium
eDepartment
of
Clinical
Child
and
Family
Studies,
VU
University
Amsterdam,
The
Netherlands
&
Bartiméus,
Doorn,
The
Netherlands
fLunet
Zorg,
Health
Centre,
Eindhoven,
The
Netherlands
gEmeritus
Professor
University
Nijmegen,
Psychiatric
Aspects
of
Intellectual
Disability,
Nijmegen,
The
Netherlands
a
r
t
i
c
l
e
i
n
f
o
Article
history:
Received
9
May
2016
Received
in
revised
form
29
August
2016
Accepted
31
August
2016
Number
of
reviews
completed
is
2.
Keywords:
Intellectual
disability
Emotional
development
Assessment
Mental
health
Challenging
behavior
Cross-cultural
approach
a
b
s
t
r
a
c
t
Background:
Intellectual
disability
(ID)
is
often
accompanied
by
delays
in
emotional
devel-
opment
(ED)
that
may
result
in
challenging
behavior.
Insight
into
emotional
functioning
is
crucial
for
appropriate
diagnostic
assessment
in
adults
with
ID.
However,
few
standardized
assessment
instruments
are
available.
Aims:
The
aim
of
this
study
was
to
develop
a
short,
psychometrically
sound
instrument
for
assessing
levels
of
ED
in
individuals
with
ID:
The
Scale
of
Emotional
Development
–
Short
(SED-S),
which
can
be
applied
to
adults.
Methods
and
procedures:
The
Scale
for
ED
–
Revised2(SED-R2)
was
taken
as
a
point
of
depar-
ture.
In
a
first
step,
the
validity
and
observability
of
the
items
(N
=
556)
in
the
SED-R2were
assessed
by
30
experts
from
Germany,
Belgium,
and
The
Netherlands.
The
SED-S
was
then
constituted
in
a
consecutive
consensus
process,
in
which
items
to
be
included
were
selected
based
on
their
assessments
and
subsequently
rephrased,
and
in
which
the
structure
and
method
of
administering
the
new
scale
were
agreed
upon.
Outcomes
and
results:
The
SED-S
consists
of
200
binary
items
describing
five
levels
of
emo-
tional
functioning
(reference
ages:
0–12
years)
within
eight
domains:
Relating
to
His/Her
Own
Body,
Relating
to
Significant
Others,
Dealing
with
Change
–
Object
Permanence,
Differ-
entiating
Emotions,
Relating
to
Peers,
Engaging
with
the
Material
World,
Communicating
with
Others,
and
Regulating
Affect.
Conclusions
and
implications:
The
SED-S
offers
an
empirical-based,
practical
tool
to
assess-
ing
ED
in
adults
with
ID.
Further
research
will
be
needed
to
meet
the
requirements
of
a
standardized
diagnostic
instrument.
©
2016
Published
by
Elsevier
Ltd.
∗Corresponding
author.
E-mail
address:
tanja.sappok@t-online.de
(T.
Sappok).
http://dx.doi.org/10.1016/j.ridd.2016.08.019
0891-4222/©
2016
Published
by
Elsevier
Ltd.
T.
Sappok
et
al.
/
Research
in
Developmental
Disabilities
59
(2016)
166–175
167
What
this
paper
adds
The
SED-S
offers
an
empirical-based,
practical
tool
to
assessing
the
level
of
emotional
development
in
persons
with
ID.
As
a
cross-cultural
instrument,
it
supports
professionals
to
identify
the
clients’
basic
emotional
needs
by
attuning
their
demands
and
the
interventions
accordingly.
This
approach
aims
to
reduce
challenging
behavior
and
to
improve
mental
health
and
wellbeing
in
persons
with
ID.
1.
Introduction
With
estimates
ranging
from
30
to
60%,
the
prevalence
of
mental
disorders
in
individuals
with
intellectual
disability
(ID)
is
several
times
higher
than
in
the
general
population
(Anda
et
al.,
2006;
Deb,
Matthews,
Holt,
&
Bouras,
2001).
These
studies
differentiate
between
psychiatric
disorders
as
such
and
challenging
behavior,
e.g.
physical
aggression,
destruction
of
property,
self-injury,
pica,
and
related
agitated/disruptive
episodes.
Psychiatric
disorders
and
challenging
behavior
may
coexist
or
occur
independently
and
are
not
necessarily
be
causally
related.
According
to
some
authors,
the
overall
rate
of
psychiatric
disorders
in
adults
with
ID
does
not
differ
significantly
from
that
seen
in
the
general
population
if
challenging
behavior
is
excluded
(Deb
et
al.,
2001).
Differentiating
between
challenging
behavior
and
psychiatric
disorders
can
be
difficult,
however.
With
decreasing
IQ,
behavior
and
symptoms
lose
their
specificity
for
particular
mental
disorders
and
take
the
form
of
non-specific
challenging
behavior.
Due
to
this
ambiguity,
the
same
treatment
is
often
applied
to
both
problems.
According
to
Deb
(2012),
25%–45%
of
individuals
with
ID
receive
psychotropic
medication,
and
approximately
30%
of
these
receive
it
due
to
challenging
behavior.
In
individuals
exhibiting
aggressive
behavior,
psychotropic
drugs
are
prescribed
in
90%
of
cases.
However,
the
utility
of
psychotropic
medication
in
coming
to
terms
with
challenging
behaviour
is
questionable
(Brylewski
&
Duggan,
2000;
NICE
Guideline,
2015;
Tyrer
et
al.,
2008).
In
order
to
better
understand
and
deal
with
challenging
behavior
in
individuals
with
ID,
Anton
Doˇ
sen
(1990)
developed
an
approach
based
on
theories
of
psychosocial
development
(e.g.
psychodynamic
theories,
development
of
attachment
and
self/ego
development)
and
findings
on
physiological
brain
development.
This
“developmental-dynamic
approach”
focuses
on
providing
insight
into
the
underlying
basic
emotional
needs
and
motivations
as
a
basis
for
better
understanding
and
addressing
the
respective
behavior.
The
“developmental
perspective”
(Cicchetti
&
Cohen,
1995;
Greenspan
&
Benderly,
1998;
Greenspan,
1997;
Harris,
1998)
supports
the
developmental-dynamic
approach.
Building
on
Doˇ
sen’s
work
and
the
findings
of
brain
research,
it
focuses
on
personality
development
and
adaptation
with
special
emphasis
on
ED
(Cicchetti
&
Cohen,
1995;
Greenspan
&
Benderly,
1998;
Harris,
1998;
Rutter,
1980).
In
this
integrated
model,
personality
is
conceptualized
as
the
result
of
cognitive,
social,
and
emotional
development
(Greenspan
&
Benderly,
1998;
Harris,
1998;
Izard,
Youngstrom,
Fine,
Mostow,
&
Trentacosta,
2006),
with
these
three
aspects
determining
the
overall
level
of
personality
development.
According
to
the
developmental
perspective,
individuals
at
a
certain
stage
of
personality
development
show
specific
adaptive
or
maladaptive
behavior
and
have
certain
basic
emotional
needs
that
must
be
met
by
the
environment
so
that
psychosocial
homeostasis
can
be
attained
and
further
development
is
possible
(Doˇ
sen,
2005a,b).
Cognitive
and
emotional
brain
functions
closely
interact
and
stimulate
each
other,
but
specific
brain
regions
focusing
on
more
cognitive
(e.g.
language)
or
emotional
(e.g.
anxiety)
aspects
may
develop
independently
from
one
another
(Kandel,
2006;
LeDoux,
2002;
Panksepp
&
Biven,
2012).
In
individuals
with
ID,
this
can
result
in
a
disparity
between
emotional
and
cognitive
competencies
(Doˇ
sen,
1990,
2014),
with
delays
in
either
direction.
Since
the
level
of
emotional
functioning
is
decisive
in
determining
internal
motivations
and
(mal-)adaptive
behavior
(Sappok
et
al.,
2013),
assessing
ED
levels
can
help
caregivers
better
understand
clients’
behavior
by
providing
insight
into
their
inner
experience
(Doˇ
sen
&
De
Groef,
2015,
2015;
Doˇ
sen,
2014).
In
summary,
emotional
development
is
a
key
factor
in
determining
the
adaptive
and/or
maladaptive
behavior
shown
by
individuals
with
ID,
and
challenging
behavior
can
be
the
result
of
delayed
development
and
associated
neglect
of
basic
emo-
tional
needs
(Sappok
et
al.,
2012a).
Assessing
ED
can
aid
in
the
diagnostic
process
and
contribute
to
a
better
understanding
of
challenging
behavior.
By
enabling
parents
and
caregivers
to
identify
basic
emotional
needs,
it
can
help
them
to
better
meet
those
needs
in
order
to
encourage
healthy
development
and
to
provide
better
treatment
and
support
for
individuals
with
intellectual
disabilities.
A
number
of
instruments
and
tools
have
been
designed
for
use
in
assessing
emotional
development
(Claes
&
Verduyn,
2012;
Morisse
&
Doˇ
sen,
2016;
Sappok
&
Zepperitz,
2016;
Vandevelde
et
al.,
2016).
Instruments
that
focus
on
ED
and
related
constructs
include
the
Levels
of
Emotional
Awareness
Scale
(LEAS;
Lane,
Quinlan,
Schwartz,
Walker,
&
Zeitlin,
1990)
the
Infant-Toddler
Social
and
Emotional
Assessment
(ITSEA;
Carter
and
Briggs-Gowan,
2000),
the
Functional
Emotional
Assessment
Scale
(FEAS;
Greenspan,
DeGangi,
&
Wieder,
2001),
the
Frankish
tool
(Frankish,
2013),
and
the
Experimentele
Schaal
voor
de
beoordeling
van
het
Sociaal
Emotionele
Ontwikkelings
Niveau
(ESSEON-R;
“Experimental
Scale
for
the
Assessment
of
the
Social-Emotional
Developmental
Level”;
Hoekman,
Miedema,
Otten,
&
Gielen,
2014).
Based
on
the
developmental
understanding
of
emotional
functioning
outlined
above,
Anton
Doˇ
sen
(1990)
devised
the
Scheme
for
Appraisal
of
Emotional
Development
(SAED)
to
assess
ED
levels
according
to
a
five-stage
model
based
on
the
normative
trajectory
of
typical
development
in
children.
The
SAED
is
applied
as
a
semi-structured
interview
with
caregivers,
168
T.
Sappok
et
al.
/
Research
in
Developmental
Disabilities
59
(2016)
166–175
whose
responses
are
scored
to
provide
estimates
of
a
client’s
current
level
of
ED
in
ten
domains
as
well
as
his/her
overall
level
(cf.
“Material
and
Methods”).
The
Scale
for
ED-Revised
(SED-R;
Claes
&
Verduyn,
2012)
and
the
Scale
for
ED-Second
Revision
(SED-R2;
Morisse
&
Doˇ
sen,
2016)
build
on
the
SAED,
using
the
same
five-stage
model
of
emotional
development,
but
incorporating
three
additional
domains
(cf.
“material
and
methods”).
These
comprehensive
scales
were
primarily
designed
to
guide
case
conferences
and
to
encourage
teams
of
caregivers
to
take
a
developmentally-based
approach
to
the
clients
in
question
(Vonk
&
Hosmar,
2009).
The
SEO-Lukas-Version
(Barrett
&
Kolb,
2013)
is
also
based
on
the
SAED.
Conceived
specifically
for
use
in
clinical
practice
in
adults
with
ID,
it
retains
the
SAED’s
ten
domains
and
aims
to
include
adult-appropriate
items
only.
It
is
available
online
in
German
and
English
(SEO-Lukas-ENG;
Barrett
&
Kolb,
2015).
Some
scales,
such
as
the
FEAS,
ITSEA,
and
ESSEON-R,
were
primarily
designed
for
children
and
adolescents
and
not
specifically
for
individuals
with
ID
(Carter
&
Briggs-Gowan,
2000;
Greenspan
et
al.,
2001;
Hoekman
et
al.,
2014).
While
the
LEAS
was
chiefly
meant
for
use
with
adults,
it
is
also
not
geared
to
individuals
with
ID
(Lane
et
al.,
1990).
The
SAED
and
the
revised
versions
SED-R
and
SED-R2were
specifically
conceived
for
individuals
with
ID,
but
although
they
were
not
intended
exclusively
for
use
with
children
and
adolescents,
they
retain
a
strong
focus
on
this
clientele.
Some
items
describe
behavior
that
is
rarely
observed
in
adults
due
to
lifelong
training,
such
as
“Is
afraid
of
the
potty
or
the
toilet.”
Others
deal
with
play
activities
typical
for
children,
but
less
so
for
adults
who
are
used
to
spending
their
days
in
sheltered
workshops
or
engaging
in
other
structured
activities.
Thus
certain
items
may
be
difficult
to
apply
in
adults.
Moreover,
the
increased
number
of
domains
in
the
SED-R/SED-R2resulted
in
a
time-consuming
procedure,
so
that
the
scales
took
about
two
hours
to
complete.
Finally,
the
SAED
and
its
revisions
cannot
claim
to
be
psychometrically
sound
enough
for
research
purposes.
Thus,
despite
their
obvious
benefits
in
clinical
practice,
the
impact
on
a
wider
level
is
limited.
The
aim
of
this
study
was
to
devise
a
short,
psychometrically
sound
scale
for
the
assessment
of
emotional
development
in
adults
with
ID
that
would
complement
existing
tools
and
be
suitable
for
diagnostic
and
scientific
purposes.
This
paper
introduces
the
new
instrument,
the
Scale
of
Emotional
Development
–
Short
(SED-S),
as
well
as
presenting
the
results
of
the
online
survey
and
describing
the
cross-cultural,
interdisciplinary
consensus
process
used
in
developing
it.
2.
Materials
and
methods
2.1.
Setting
and
design
The
study
was
initiated
by
the
first
author
of
this
manuscript,
who
is
affiliated
with
the
Evangelisches
Krankenhaus
Königin
Elisabeth
Herzberge
in
Berlin,
Germany.
The
project
was
conducted
in
collaboration
with
professionals
in
a
number
of
other
study
sites
experienced
in
applying
the
developmental
approach:
the
St.
Lukas-Klinik
in
Liebenau
(Germany);
the
Faculty
of
Education,
Health
and
Social
Work
at
University
College
Ghent,
the
Department
of
Special
Needs
Education
and
the
SEN-SEO
project
at
Ghent
University
(Belgium);
and
Radboud
University
in
Nijmegen,
the
Lunet
zorg
health
center
in
Eindhoven,
the
Department
of
Clinical
Child
and
Family
Studies
at
VU
University
Amsterdam
and
Cordaan
in
Amsterdam,
Bartiméus
in
Doorn,
and
De
Twentse
zorgcentra
in
Enschede
(the
Netherlands).
A
group
of
interested
professionals
from
these
institutions
and
services
founded
the
‘Network
of
Europeans
on
ED’
(NEED)
with
the
aim
of
collaboratively
devising
an
abbreviated
version
of
the
SED-R2,
and
the
SED-S
was
subsequently
developed
in
a
multi-stage
process.
The
process
contained
following
steps:
(a)
an
online
survey
for
pre-selecting
items
(b)
a
consensus
meeting
for
dicussing
the
structure,
application,
and
scoring
of
the
new
scale
and
defining
rephrasing
rules
for
the
original
SED-R2items
(c)
a
first
multi-center
rephrasing
process,
(d)
a
refinement
of
the
rephrasing
rules
during
a
second
consensus
meeting
and
(e)
a
final
rephrasing
process.
All
taken
steps
are
described
in
more
detail
below.
The
items
developed
in
this
manner
were
continually
translated
back
and
forth
from
Dutch
into
German
and
vice
versa
throughout
the
process,
resulting
in
Dutch
and
German
versions
of
the
SED-S
that
were
produced
concurrently.
In
a
final
step,
the
German
version
of
the
SED-S
was
translated
into
English
and
the
translation
was
independently
double-checked
by
several
bilingual
experts
on
ED.
2.2.
Instruments
used
as
a
basis
for
the
SED-S:
the
SAED,
SED-R
and
SED-R2
2.2.1.
The
SAED
Anton
Doˇ
sen
(2005a,b)
took
the
acquisition
of
emotional
competencies
over
the
course
of
the
maturation
process
in
typically
developed
children
from
birth
to
the
age
of
twelve
as
his
point
of
departure
for
this
model.
The
SAED
describes
five
stages
of
socio-emotional
development
–
Adaptation
(0–6
months),
Socialization
(6–18
months),
Individuation
(18–36
months),
Identification
(3–7
years)
and
Reality
Awareness
(7–12
years)
–
in
ten
different
domains:
(1)
How
the
person
deals
with
his/her
own
body,
(2)
Interaction
with
caregivers,
(3)
Experience
of
self,
(4)
Object
permanence,
(5)
Anxieties,
(6)
Interaction
with
peers,
(7)
Handling
of
material
objects,
(8)
Verbal
communication,
(9)
Affect
differentiation
and
(10)
Aggression
regulation.
In
a
study
based
on
the
Italian
version
of
the
SAED
and
a
sample
of
N
=
33
clients
with
ID
without
co-occurring
mental
or
behavioral
disorders,
La
Malfa,
Lassi,
Bertelli,
Albertini,
and
Dosen
(2009)
found
a
high
internal
consistency
(Cronbach’s
alpha
=
0.958),
substantial
inter-rater
reliability
(kappa
=
0.75)
and
a
significant
positive
correlation
(r
=
0.657)
between
the
average
total
scores
obtained
using
the
SAED
and
Vineland
Adaptive
Behavior
Scales
(VABS).
T.
Sappok
et
al.
/
Research
in
Developmental
Disabilities
59
(2016)
166–175
169
2.2.2.
The
SED-R/SED-R2
The
SED-R
expanded
on
the
original
SAED
by
incorporating
three
additional
domains:
“Day
Activity–Play
Development,”
‘Moral
Development’
and
“Emotion
Regulation”
(Claes
&
Verduyn,
2012).
The
SED-R2was
developed
(Morisse
&
Doˇ
sen,
2016)
based
on
the
SED-R
considering
clinical
experience
and
reliability
analysis
in
N
=
67
cases
(Vandevelde
et
al.,
2016).
The
ED
levels
assigned
by
the
interviewer
in
the
individual
domains
provide
the
basis
for
an
“overall”
ED
level.
Calculated
by
ranking
the
domains
according
to
their
scores
and
counting
up
from
that
with
the
lowest
score
to
the
seventh
in
the
list
(Claes
&
Verduyn,
2012),
the
overall
ED
level
is
defined
as
equal
to
or
no
higher
than
the
level
assigned
for
the
seventh-lowest-ranking
domain
(Vandevelde
et
al.,
2016).
A
study
conducted
in
Flanders
(Belgium)
with
67
clients
with
ID
(both
with
and
without
co-occurring
mental
or
behavioral
disorders)
showed
a
high
internal
consistency
(Cronbach
Alpha
=
0.95)
and
substantial
inter-rater
reliability
for
overall
scores
(ICC
=
0.73)
obtained
using
the
SED-R2,
although
the
coefficients
for
some
domains
were
reported
to
be
low
(Vandevelde
et
al.,
2016).
Although
the
results
obtained
with
the
SED-R/SED-R2are
promising
in
regard
to
internal
consistency,
inter-rater
reliability
(especially
in
regard
to
the
overall
score)
and
convergent
validity
with
the
VABS,
more
research
using
different
and
larger
samples
is
needed
to
corroborate
these
findings.
2.3.
Online
survey
An
online
survey
using
the
online
survey
software
Qualtrics
was
conducted
by
University
College
Ghent
in
cooperation
with
Ghent
University.
The
panel
included
both
practitioners
and
academic
researchers,
all
of
whom
had
to
meet
the
follow-
ing
criteria:
(1)
expert
knowledge
of
developmental
psychology
and
ED,
(2)
extensive
diagnostic
experience
with
individuals
with
intellectual
disabilities,
and
(3)
experience
in
administering
the
SAED,
SED-R
and/or
SED-R2.
It
was
made
up
of
six
psy-
chiatrists,
eleven
specialists
with
a
background
in
special-needs
education,
eight
psychologists,
four
professionals
with
a
degree
in
psychology
and
education,
and
one
music
therapist.
The
participating
experts
rated
the
556
items
in
the
SED-R2
in
terms
of
validity
and
observability
by
selecting
one
of
four
responses
to
the
following
two
questions:
(A)
How
suitable
is
the
item
as
an
indicator
for
the
assigned
level
of
development?
very
suitable
(0);
somewhat
suitable
(1);
somewhat
unsuitable
(2);
or
clearly
unsuitable
(3).
(B)
How
would
you
rate
the
item
in
terms
of
observability
on
a
behavioral
level?
excellent
(0);
good
(1);
poor
(2);
or
unacceptable
(3).
2.4.
Data
analysis
The
responses
given
by
the
panel
members
in
regard
to
validity
and
observability
were
analyzed
by
calculating
the
Means
(M)
and
Standard
Deviations
(SD).
First,
the
items
for
the
respective
domains
were
ranked
by
their
mean
scores
for
the
first
question
(expert
validity)
and
those
ranking
from
one
to
six
were
retained.
In
a
second
step,
the
remaining
items
were
ranked
according
to
their
scores
for
the
second
question
(observability).
The
five
items
with
the
highest
scores
were
then
selected
for
inclusion
in
the
SED-S
to
provide
a
broad
base
for
the
next
step
in
the
development
of
the
instrument.
When
two
domains
were
subsumed
into
one
(c.f.
Table
3),
ranking
was
based
on
all
items
of
the
two
domains.
2.5.
Consensus
meetings
The
members
of
the
NEED
group
(see
2.1.)
convened
in
Berlin
in
May
2015
in
order
to
discuss
the
results
obtained
by
the
online
survey
and
constitute
the
SED-S.
The
representatives
of
the
participating
institutions
and
services1reviewed
and
discussed
the
purpose
of
the
new
scale,
its
structure
(i.e.
the
number
of
items
and
domains
to
be
included),
how
it
was
to
be
administered
(i.e.
in
the
form
of
a
semi-structured,
guided
interview
or
as
a
questionnaire
to
be
filled
out
by
informants
on
their
own),
and
how
it
was
to
be
scored
on
the
domain
and
overall
levels.
Particular
attention
was
paid
to
the
criteria
to
be
applied
in
the
rephrasing
process
(e.g.
phrasing
items
as
clearly
and
unambiguously
as
possible).
The
eight
domains
agreed
upon
were
subsequently
divided
up
among
four
groups
(two
in
Germany,
one
in
Belgium
and
one
in
the
Netherlands).
Each
group
was
responsible
for
checking
and
rephrasing
the
items
in
the
domains
they
had
been
assigned
according
to
the
rephrasing
rules.
The
groups
double-checked
each
other’s
results
in
order
to
ensure
multi-site
consensus
and
cross-cultural
intelligibility.
In
addition,
some
items
were
omitted
(e.g.
because
they
duplicated
the
content
of
items
in
other
domains)
and
others
were
added
(because
some
domains
included
only
four
items)
on
the
basis
of
another
round
of
ratings
solicited
from
the
participating
experts,
bringing
the
selection
process
another
step
closer
to
conclusion.
1The
participants
included:
Germany,
Berlin:
Melanie
Adam,
Thomas
Bergmann,
Miriam
Franke,
Isabell
Gaul,
Manuel
Heinrich,
Heika
Kaiser,
Peggy
Rösner,
Tanja
Sappok,
Marcus
Vogel,
Sabine
Zepperitz;
Germany,
Liebenau:
Brian
Barrett,
Jürgen
Kolb,
Christoph
Sabellek;
Belgium:
Claudia
Claes,
Bea
Jonckheere,
Leen
Poppe,
Els
Ronsse,
Filip
Morisse,
Leen
de
Neve,
Stijn
Vandevelde,
Dieter
Windels;
The
Netherlands:
Ester
de
Bruijn,
Anton
Doˇ
sen,
Mieke
Hoenderboom,
Charlotte
Mutsaerts,
Paula
Sterkenburg,
Jolanda
Vonk.
170
T.
Sappok
et
al.
/
Research
in
Developmental
Disabilities
59
(2016)
166–175
Table
1
Validity
and
Observability
Results
for
the
Six
SAED
Items
Scoring
Best
for
Expert
Validity
(Domain
One,
Level
1).
Code
Item
Expert
Validity
Observability
Selection
M
SD
M
SD
D1F1.1
He
is
preoccupied
with
physical
sensations
and
external
stimuli
(e.g.
hunger,
thirst,
fatigue,
pain).
His
duty
is
to
preceive,
realize,
select
and
react
to
the
various
stimuli.
1.35
0.49
2.00
0.73
retained
D1F1.3
He
feels
safe
and
secure
with
familiar
sounds,
faces,
smells,
tastes
etc.
He
enjoys
skin
contact.
1.50
0.63
1.57
0.57
retained
D1F1.6
He
passively
enjoys
sensory
stimuli. 1.53
0.68
1.72
0.65
retained
D1F1.4
He
explores
his
body
haphazardly
by
touching,
grasping,
sucking
etc.
various
parts
of
it.
1.63
0.67
1.93
0.74
retained
D1F1.2
Initially
he
is
prone
to
sensory
overload
and
frequently
becomes
agitated
or
anxious
when
faced
with
overwhelming
stimuli.
1.77
0.73
2.17
0.70
rejected
D1F1.9
May
release
pent-up
tension
in
abrupt
movements
or
engage
with
his
body
stereotypically
(tics,
flapping
arms,
screaming,
hitting,
rocking).
1.77
0.73
1.43
0.50
retained
The
rephrasing
rules
were
then
refined
further
during
a
second
consensus
meeting
in
Florence
in
September
2015
and
subsequently
applied
to
the
items
in
the
scale.
After
the
participating
staff
members
at
the
four
study
sites
had
reviewed
all
items
and
cross-checked
for
items
duplicated
in
different
domains,
the
final
item
set
was
discussed
and
adjusted
in
a
concluding
consensus
meeting
held
in
Luxembourg
in
February
2016.
3.
Results
3.1.
The
online
survey
The
results
of
the
Qualitrics
Survey
for
Level
1
in
Domain
One
have
been
provided
as
an
example
in
the
following
Table
1.
The
mean
scores
in
Domain
One
ranged
from
M
=
1.35
for
item
D1F1.1
(“He
is
preoccupied
with
physical
sensations
and
external
stimuli.”)
to
M
=
1.77
for
items
D1F1.2
(‘Initially
he
is
prone
to
sensory
overload
and
frequently
becomes
agitated
or
anxious
when
faced
with
overwhelming
stimuli.”)
and
D1F1.9
(“May
release
pent-up
tension
in
abrupt
movements
or
engage
with
his
body
stereotypically
(tics,
flapping
arms,
screaming,
hitting,
rocking’).
Then
the
observability
ratings
for
the
six
items
were
evaluated
in
a
second
step,
and
the
one
with
the
lowest
score
was
eliminated
(in
this
case
D1F1.2
with
M
=
2.17)
while
the
others
were
retained
for
further
refinement.
See
Appendix
A
for
expert
validity
and
observability
ratings
for
all
556
SED-R2items.
3.2.
The
consensus
meetings
3.2.1.
Purpose
of
the
scale
The
SED-S
was
developed
as
an
instrument
for
assessing
the
level
of
ED
in
individuals
with
ID.
During
the
NEED
meetings
it
became
evident
that
diverging
developments
in
the
various
centers
have
resulted
in
different
understandings
of
the
developmental
approach
(Ronsse,
2015),
highlighting
the
need
for
a
common
instrument
to
eliminate
inconsistencies
and
ambiguities
and
facilitate
research.
The
design
and
scoring
of
the
new
scale
should
allow
psychometric
evaluation
of
objectivity,
reliability,
and
validity
in
the
future
and
aim
to
provide
clear,
unequivocal
results.
However,
ED
levels
determined
by
the
SED-S
should
always
be
understood
as
indicative
of
individuals’
level
of
emotional
functioning
in
a
specific
environmental
context
rather
than
as
static
diagnostic
labels.
3.2.2.
Rephrasing
rules
The
rephrasing
rules
included
both
general
guidelines
for
developing
items
(avoid
negations
and
ambiguity,
use
simple
language,
stick
to
the
present
tense
and
use
gender-neutral
terms),
as
well
as
a
number
of
more
specific
rules.
Some
examples
are
provided
in
Table
2.
3.2.3.
Structure
of
the
SED-S
In
the
interest
of
creating
a
more
manageable
instrument
and
reducing
content
overlap,
a
number
of
the
thirteen
domains
included
in
the
SED-R/SED-R2were
combined
to
produce
eight
domains
in
the
new
scale.
See
Table
3
for
a
depiction
of
the
change
in
structure.
With
five
binary
items
for
each
of
the
five
ED
levels
in
each
of
the
eight
domains,
the
SED-S
includes
a
total
of
200
items
in
all.
T.
Sappok
et
al.
/
Research
in
Developmental
Disabilities
59
(2016)
166–175
171
Table
2
Rephrasing
Rules
with
Selected
Examples.
Rephrasing
Rule
Applied
Item
Before
Rule
was
Applied
Item
after
Rule
was
Applied
Yes
(typical)/No
(not
typical)
response
must
be
possible
D1F1.1:
He
is
preoccupied
with
physical
sensations
and
external
stimuli
(e.g.
hunger,
thirst,
fatigue,
pain).
His
duty
is
to
preceive,
realize,
select
and
react
to
the
various
stimuli.
Emotional
states
are
largely
determined
by
basic
physical
sensations
and
needs
(hunger,
thirst,
pain,
fatigue,
cold).
Each
item
should
assess
a
single
aspect
of
behavior;avoid
using
“and”
and
“or”
D1F1.9:
Short,
instantaneous
physical
discharges
may
occur
or
the
dealing
with
the
own
body
tends
to
be
stereotypic
(tics,
flattering
with
arms,
screaming,
hitting,
rocking).
Engages
with
his/her
body
by
means
of
repetitive
movements
(flapping
arms,
rocking
back
and
forth
etc.)
and
vocalizations.
Only
assess
aspects
that
can
be
observed
on
a
behavioral
level D1F4.6:
Sense
of
shame
starts
to
develop
gradually.
Shows
a
sense
of
shame/modesty
(closes
the
door
when
using
the
toilet,
for
example).
Use
simple
language
D3F4.3:
He
takes
the
initiative
und
makes
decisions
with
growing
awareness
for
the
environment.
Makes
decisions
on
his/her
own
and
is
aware
of
the
immediate
consequences
(when
crossing
the
street,
for
example).
Use
unambiguous
terms
D2F3.3:
He
is
eager
to
assert
his
independence,
yet
at
the
same
time
is
afraid
of
losing
significant
others.
Only
obeys
rules
when
authority
figures
are
present.
Use
terms
appropriate
for
adults D11F2.2:
He
reaches
for
toys
in
his
environment
Reaches
for
things
he/she
can
see
or
hear.
Find
appropriate
translations
for
key
terms
•
Caregiver
(Engl.)
=
Betreuer
(German)
=
begeleider
(Dutch)
•
Significant
other
=
Bezugsperson
=
belangrijke
andere
•
Authority
fig-
ure
=
Autoritätsperson
=
gezagsfiguur
•
Role
model
=
Vorbild/Orientierungsperson
=
rolmodel
•
Peer
=
Peer
=
medecliënten
Table
3
Reorganization
of
SED-Domains.
SED-R2Domain
SED-Short
Domain
1
Dealing
with
own
body
1
Relating
to
his/her
own
body
2
Dealing
with
emotionally
important
others
2
Relating
to
significant
others
3
Self-image
in
interaction
with
the
invironment
4
Dealing
with
a
changing
environment
–
object
permanence
3
Dealing
with
change
–
object
permanence
5
Anxieties
4
Differentiating
emotions
9
Emotion
Differentiation
6
Dealing
with
peers
5
Relating
to
peers
7
Dealing
with
materials
6
Engaging
with
the
Material
World
11
Day
activity
–
play
development
8
Communication
7
Communicating
with
Others
10
Aggression
Regulation
8
Regulating
Affect
13
Emotion
regulation
12
Moral
development
172
T.
Sappok
et
al.
/
Research
in
Developmental
Disabilities
59
(2016)
166–175
3.2.4.
Administering
the
scale
Based
on
the
assumption
that
an
exploration
of
a
client’s
characteristic
behavior
guided
by
an
expert
for
developmental
psychology
will
produce
the
most
valid
information,
it
was
decided
that
the
SED-S
should
be
administered
in
the
form
of
semi-structured
interviews
conducted
with
at
least
two
informants.
The
experts
involved
in
the
consensus
process
reached
agreement
that
a
guided
assessment
is
essential
if
behavior
observed
in
clients
is
to
be
interpreted
correctly.
To
take
account
of
the
fact
that
behavior
may
vary
in
different
contexts,
interviews
should
preferably
be
conducted
with
informants
from
several
different
areas
of
the
client’s
life,
(e.g.
living,
working,
therapy,
and
family
life).
To
ensure
that
information
is
reliable,
they
should
be
adequately
familiar
with
the
clients
in
question,
i.e.
they
should
have
interacted
with
them
regularly
for
at
least
three
months
in
their
daily
environments
or
for
at
least
two
weeks
in
a
clinical
setting.
Assessments
made
based
on
the
structured
interviews
should
reflect
a
consensus
decision
of
the
respective
team
of
informants
and
a
representative
sample
of
the
clients’
behavior
in
order
to
provide
the
best
estimation
of
their
level
of
emotional
functioning
at
that
particular
time.
3.2.5.
Scoring
3.2.5.1.
Domain
scoring.
The
level
of
ED
with
the
highest
number
of
items
rated
as
‘typical’
is
assumed
to
provide
the
best
estimation
of
the
client’s
level
of
ED
in
that
particular
domain.
If
two
ED
levels
are
rated
with
an
equal
number
of
items,
the
lower
level
is
to
be
chosen
as
the
point
of
reference.
3.2.5.2.
Overall
Scoring.
A
rank-based
strategy
is
proposed
for
the
estimation
of
the
overall
ED
level,
with
the
fourth
lowest-
score
determining
the
overall
level
of
ED.
3.2.5.3.
Example
for
the
overall
scoring.
Assuming
the
following
results,
Domain
One:
Level
1;
Two:
Level
1;
Three:
Level
2;
Four:
Level
2;
Five:
Level
1;
Six:
Level
3;
Seven:
Level
2;
Eight:
Level
2,
the
list
of
ranked
ED
levels
obtained
in
the
eight
domains
would
be:
1,
1,
1,
2,
2,
2,
2,
3.
The
score
that
is
the
fourth
lowest
in
the
list
is
“2,”
so
the
individual’s
overall
result
is
“Level
2.”
4.
Discussion
The
SED-S
was
devised
as
a
scale
to
assess
the
level
of
ED
in
adults
with
ID.
It
builds
on
the
developmental-dynamic
approach
set
out
by
Anton
Doˇ
sen
in
the
SAED
(Doˇ
sen,
1990),
a
model
based
on
normal
development
in
infants
and
children
according
to
which
emotional
competencies
are
acquired
in
a
progressive
sequence
of
qualitative
changes
incorporating
emotional
as
well
as
social,
sensorimotor
and
cognitive
functions.
With
200
binary
items
in
all
–
five
items
for
each
level
of
ED
–
the
SED-S
provides
a
profile
of
ED
levels
over
eight
domains
that
can
serve
as
the
basis
for
estimating
the
client’s
overall
level
of
emotional
functioning.
Developed
in
a
comprehensive
consensus
process
in
Dutch,
German,
and
English
on
the
basis
of
ratings
by
a
cross-cultural
panel
of
experts,
the
new
scale
is
the
result
of
a
collaborative
effort
of
specialists
in
several
different
fields
and
countries
who
have
gained
comprehensive
clinical
experience
with
the
emotional
developmental
approach
(Barrett
&
Kolb,
2013;
Claes
&
Verduyn,
2012;
Doˇ
sen,
1990;
Sappok
&
Zepperitz,
2016;
Vonk
&
Hosmar,
2009).
A
number
of
revised
versions
of
the
original
SAED
(Doˇ
sen,
1990)
have
emerged
(Barrett
&
Kolb,
2013;
Claes
&
Verduyn,
2012;
Morisse
&
Doˇ
sen,
2016)
within
the
past
years.
In
the
current
collaborative
effort
we
aimed
to
create
an
abbreviated,
psychometrically
sound
scale
for
assessing
ED
in
adults
with
ID
suitable
both
for
use
in
clinical
practice
and
for
research
purposes.
The
assessment
of
emotional
functioning
is
central
to
a
better
understanding
of
challenging
behavior
in
individuals
with
ID
(Doˇ
sen
2014;
De
Schipper
&
Schuengel,
2010;
Sappok
et
al.,
2014).
Basic
emotional
needs
are
decisive
for
the
motivation
to
display
a
certain
behavior.
Moreover,
individual
competencies
such
as
communication,
self-regulation,
the
ability
to
attribute
mental
states,
object
permanency,
etc.
vary
greatly
according
to
the
level
of
emotional
development
and
play
a
significant
role
in
determining
observable
adaptive
behavior
(Baillargeon,
2004;
Wimmer
&
Perner,
1983).
Thus
assessing
the
level
of
emotional
development
is
crucial
for
a
person-focused
approach
to
understanding
and
dealing
with
challenging
behavior.
Adapting
the
environment
and
attuning
sensitive
caregivers
to
clients’
basic
emotional
needs
may
reduce
challenging
behavior
and
support
clinicians
to
discontinue
psychotropic
medication
for
certain
symptoms
with
questionable
and
limited
effects
(Brylewski
&
Duggan,
2000;
Matson
&
Neal,
2009;
Oliver-Africano,
Murphy,
&
Tyrer,
2009;
Tyrer
et
al.,
2008).
The
developmental-dynamic
approach
distinguishes
five
levels
of
emotional
development.
However,
emotional
devel-
opment
is
a
continuous
process
with
finely
graded
changes
throughout
a
person’s
entire
lifetime,
and
other
assessment
instruments
such
as
the
ESSEON
use
much
smaller
subsections
to
emphasize
the
continuous
aspect
of
socio-emotional
development
(Hoekman
et
al.,
2014).
Emotional
development
cannot
be
assessed
like
IQ.
An
individual’s
current
level
of
functioning
depends
on
various
intrinsic
(e.g.
psychiatric
disorders)
and
external
factors
(e.g.
major
life
events)
and
can
even
change
over
the
course
of
a
single
day
(Sappok
&
Zepperitz,
2016).
Therefore
the
SED-S
is
based
on
a
concept
of
emo-
tional
functioning
that
emphasizes
the
dynamic
nature
of
changing
emotional
needs
(c.f.
Fig.
1),
and
its
main
focus
lies
on
identifying
individuals’
emotional
needs
rather
than
providing
an
exact
assessment
of
their
“level”
of
(socio-)emotional
development.
T.
Sappok
et
al.
/
Research
in
Developmental
Disabilities
59
(2016)
166–175
173
Fig.
1.
Basic
Emotional
Needs
According
to
the
Dynamic-Developmental
Model.
Certain
basic
emotional
needs
predominate
at
each
stage
of
development
(Maslow
&
Kruntorad,
1994).
Although
they
may
diminish
during
the
further
maturation
of
the
individual,
they
do
not
disappear
completely,
and
intra-individual
or
external
factors
such
as
a
psychiatric
disorder
or
major
life
event
can
cause
needs
characteristic
of
previous
developmental
levels
to
come
back
to
the
fore
(Anda
et
al.,
2006).
The
SED-S
should
be
understood
as
a
tool
that
can
offer
insight
into
the
inner
experience
of
individuals
with
ID
and
provide
caregivers
and
others
in
their
social
network
with
a
better
understanding
of
adaptive
and
maladaptive
behavior.
It
aims
to
support
caregivers
in
creating
environments
and
interactional
settings
that
allow
adults
with
ID
to
live
up
to
their
individual
potential
and
lead
fulfilled,
meaningful
lives
(Sappok
&
Zepperitz,
2016).
The
method
of
administering
the
scale
was
chosen
to
take
account
of
the
contextual
aspect
of
emotional
functioning.
Individuals’
level
of
functioning
is
highly
dependent
on
their
relationships
with
caregivers
(Gilbert,
2015).
Overprotective
caregivers
may
elicit
very
different
behavior
and
competencies
than
those
emphasizing
self-determination
and
individual
responsibility.
Thus
it
is
impossible
to
regard
ED
in
isolation
from
the
very
individual
relationships
clients
have
with
their
caregivers.
Moreover,
it
is
essential
to
take
an
individual’s
biography,
specific
environment
as
well
as
other
aspects
of
development
into
account
when
assessing
ED
in
adults
with
ID.
This
complexity
underscores
the
importance
of
taking
a
dynamic,
inter-
disciplinary
approach
and
the
need
for
discussion
among
caregivers
and
professionals
within
teams.
For
these
reasons,
the
SED-S
should
be
administered
in
the
form
of
a
guided
interview
with
members
of
a
team
of
caregivers
rather
than
as
a
simple
questionnaire
with
behavior
items
for
informants
to
check
off.
In
the
case
of
equal
scores
for
two
ED
levels
within
a
domain,
the
lower
of
the
two
should
be
assigned
as
the
ED
level
for
the
respective
domain.
Overestimating
individuals’
level
of
emotional
functioning
may
overwhelm
their
adaptive
capabilities
and
lead
to
maladaptive
behavior.
Taking
a
lower
developmental
level
as
a
point
of
departure
for
planning
pedagogical
interventions
may
be
more
beneficial
(Doˇ
sen,
2014;
Sappok,
Diefenbacher,
Bergmann,
Zepperitz,
&
Dosen,
2012).
In
case
of
uneven
profiles
of
ED
with
different
levels
of
ED
in
various
domains,
the
utility
of
an
‘overall’
score
may
be
questionable.
For
clinical
communication
and
care
planning,
the
‘profile
of
ED’
may
be
the
more
appropriate
way
to
meet
the
different
aspects
of
personality
and
the
hereby
associated
personal
needs.
A
clear
description
of
what
may
be
rated
as
“uneven”
or
as
an
“even”
level
of
ED
needs
to
be
assigned
during
the
assessment
process
of
this
newly
developed