!

Behavioural+and+
emotional+problems+in+ Forster,!S.,!Gray,!K.M,!
people+with+severe+and+ Taffe,!J.,!Einfeld,!S.L.!y!
profound+intellectual+ Tonge,!B.J.!!(2011).!
disability.+

! +

Forster,!S.,!Gray,!K.M,!Taffe,!J.,!Einfeld,!S.L.!y!Tonge,!B.J.!!(2011)!Behavioural!and!emotional!
problems!in!people!with!severe!and!profound!intellectual!disability,!vol.!55,!part.!2,!pp.!190–
198.!
Journal of Intellectual Disability Research doi: 10.1111/j.1365-2788.2010.01373.x
190
    pp –  

Behavioural and emotional problems in people with

severe and profound intellectual disability jir_ ..

S. Forster,1 K. M. Gray,1 J. Taffe,1 S. L. Einfeld2,3 & B. J. Tonge1

1 Centre for Developmental Psychiatry and Psychology, School of Psychology and Psychiatry, Monash University, Melbourne,
Australia
2 Faculty of Health Sciences, University of Sydney, Sydney, Australia
3 Brain and Mind Research Institute, University of Sydney, Sydney, Australia

Abstract behavioural and emotional problems. Caution

should be exercised by researchers treating these
Background People with severe and profound
two disparate groups as a single group, and by prac-
levels of intellectual disability (ID) are frequently
titioners translating such findings into practice.
examined as a single group in research. However,
these two groups may be significantly different, par- Keywords behaviour, longitudinal study, profound
ticularly in the area of emotional and behavioural intellectual disability, severe intellectual disability
difficulties.
Method The Developmental Behaviour Checklist
(DBC) was completed by parents and caregivers of
Introduction
 people with severe ID and  people with pro-
found ID at four time periods across  years. In research on behavioural and emotional problems,
Regression analyses were used to examine trends in people with severe and profound levels of intellec-
sub-scale scores across time and groups. tual disability (ID) are often collapsed into a single
Results Significant differences between the groups group called severe and/or profound (Matson et al.
of people with severe and profound ID were found. ; Evans et al. ; Ross & Oliver ) or just
People with profound ID had significantly lower severe. While this may make sense from a statistical
scores across all sub-scales except Social Relating. perspective, given that the numbers of people in
This was usually related to fewer items being these populations may be small compared to people
selected as present for people with profound ID, as with less severe levels of ID, the scientific validity of
opposed to the scores being attributable to lower making this distinction is questionable. Certainly,
item severity scores. clinical similarities exist, such as limitations of lan-
Conclusions There are significant differences guage skills, in particular self-reporting skills (some-
between groups of people with severe and profound thing that excludes people from gold-standard
ID in scores on the DBC, indicating differences in psychiatric assessments conducted in the usual
ways), which make the two groups distinct from
Correspondence: Ms Sheridan Forster,  Karingal Drive, Eltham other groups of people with ID. However, little is
North, Vic. , Australia (e-mail: [email protected]). known about whether these groups are significantly

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S. Forster et al. • Behavioural differences: severe and profound ID

comparable, or whether they are too different to combination of Vineland Scale Survey form
justify a congregate group. (Sparrow et al. ) and their researchers’ own
Researching a combined group of people with health check, which enabled a clinical judgement
severe and profound IDs has progressed under- consistent with the Diagnostic Criteria for Research
standing of behavioural and emotional problems, accompanying the ICD- ( World Health Organiza-
particularly in the past  years. Assessment of tion ). The researchers reported a prevalence
mood has been used to better understand depres- of mental illness in people with profound ID that
sive symptomatology in adults with the most severe ranged from .% when using the DSM-IV-TR to
levels of disability and how such behaviours may .% when using a clinical opinion. Affective disor-
be interpreted as challenging behaviours (Tsiouris ders and problem behaviours (as defined by Diag-
; Ross & Oliver , ). Broad types of nostic Criteria for Psychiatric Disorders for Use with
challenging behaviours have been described and Adults with Learning Disabilities/Mental Retarda-
their persistence over time analysed (Thompson & tion; Royal College of Psychiatrists ) were
Reid ; Einfeld et al. a). People with severe reported to have the highest -year incidence rates.
and profound levels of ID have been shown to have Several researchers have examined behaviour
lower disruptive behaviour and higher self-absorbed and emotional problems using grouped ranges of
type behaviours (Einfeld et al. b) and have degrees of ID examining differences between people
slower declining scores with age (i.e. slower with profound and mild levels of ID (Taffe et al.
improvement) than people with mild and moderate ), or profound with all other levels of ID
levels of ID (Einfeld et al. a). Scales, such as (Rojahn et al. ). Taffe et al. () found that
the Diagnostic Assessment for the Severely Handi- people with profound ID were shown to have sig-
capped – II, have been used to describe the behav- nificantly lower scores than people with mild ID in
ioural symptoms of anxiety (Matson ; Matson regards to overall level of psychopathology mea-
et al. ). sured using the Developmental Behaviour Checklist
However, there are many differences between (DBC; Einfeld & Tonge , ) in mean item
people with severe and profound levels of IDs. scores (MIS), proportion of items checked (PIC)
People with profound ID are more likely to have and intensity indexes. However, in contrast, signifi-
additional disabilities such as physical, sensory and cant differences were not found between people
health disabilities, and are less likely than people with severe ID and the mild reference group.
with severe ID to use any symbolic forms of com- Rojahn et al. () reported that people with pro-
munication such as speech, pictures or gestural lan- found ID had higher mean scores on the total and
guages (Kobe et al. ; Evenhuis et al. ). sub-scales of the Behavior Problem Index (BPI-)
Combined, the different communication and addi- than people with other levels of ID, particularly in
tional disabilities impact significantly on experience terms of self-injurious and stereotypic behaviours.
and expression, creating further barriers to use of The aim of the following study was to examine
generic emotional and behavioural assessment tools the similarities and differences between groups of
and interventions. In light of these additional people with severe and profound IDs on a measure
impairments, it has been suggested that people with of emotional and behavioural difficulties.
profound ID are the most likely to experience chal-
lenges to their mental health and least likely to
receive appropriate support (Sheehy & Nind ).
Method
Few researchers have examined people with a pro-
found ID as either an individual or comparison This study is a part of a larger longitudinal study
group that can be discriminated from people with called the Australian Child to Adult Development
severe ID. One of the exceptions has been the work study, detailed procedures for which have been
of Cooper et al. (), who, through a population- reported elsewhere (Einfeld & Tonge a,b;
based prospective cohort study across  years, exam- Tonge & Einfeld ; Einfeld et al. a,b,c).
ined the prevalence of mental illness in adults with The original / cohort of children (aged
profound ID. Profound ID was determined using a – years) were recruited from all health, educa-

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Table 1 Participant sample size and mean age at assessment

Sample size Mean age (years) (SD)

Male Female Male Female

SID PID SID PID SID PID SID PID

Time 1 66 11 43 11 12.3 (4.2) 10.8 (3.3) 11.6 (3.9) 12.9 (3.5)

Time 2 57 7 39 10 16.6 (4.4) 16.3 (3.2) 16.6 (3.8) 17.6 (4.1)
Time 3 49 7 37 7 19.7 (4.5) 19.2 (3.3) 19.4 (3.9) 20.5 (3.7)
Time 4 51 6 32 6 23.9 (4.6) 23.2 (3.7) 23.5 (3.3) 25.1 (4.1)

SID, severe intellectual disability; PID, profound intellectual disability.

tion and family agencies supporting young people motor and self-help skills) and observations by
with ID in a number of census regions in Australian experienced psychologists and psychiatrists. Indi-
states of New South Wales and Victoria. Ascertain- viduals were categorised according to the ranges of
ment of children with moderate, severe and pro- ID specified by the DSM-IV (American Psychiatric
found levels of ID was reported as virtually Association ). Consistent with ICD- ( World
complete. However, those with mild ID are undera- Health Organization ), people with profound
scertained, because those with the mildest ID are ID had an estimated IQ of less than , were
often unknown to services. Longitudinal data were severely limited in ability to understand or comply
collected by postal questionnaires completed four with instructions, additional disabilities, and
times covering a period of  years: time  (– required assistance in all tasks of daily living, and
), time  (–), time  () and time people with severe ID had an estimated IQ between
 (–). The questionnaires were mailed out  and .
to the participant’s parents and/or caregivers to The epidemiological sample across all levels of ID
complete. At time , participation was .% of the at time  consisted of  children aged between 
identified population (Einfeld et al. b). The and  years. This study focuses only on those
response rate, excluding the  participants who people who had a severe or profound ID (Table ).
died since time , at time  was .% (n = ), At time ,  (.%) were classified as having a
.% (n = ) at time , and .% (n = ) at severe degree of ID and  (.%) with a profound
time  (Einfeld et al. a). degree of ID. Additional biological assessments were
Institutional review board and ethics approval completed with .% of the participants with severe
were obtained from the Monash University Stand- ID and .% participants with profound ID
ing Committee on Ethics in Research on Humans, (Table ). Participants with profound ID had more
Melbourne, Australia, and relevant human research additional disabilities. At time ,  remaining par-
ethics committees in New South Wales; consent on ticipants had a severe ID and  had a profound ID.
behalf of the people with severe and profound ID Nine of the participants with profound ID and 
was provided by legal guardians. with severe ID had been known to have died during
the time of the study. The remaining attrition was
Participants because of people choosing not to be involved or
people being no longer able to be located.
Given the floor effect of many standard IQ assess-
ments (Leyin ), the level of ID was estimated
Questionnaire
for those with possible severe and profound ID
using a range of cognitive assessments, adaptive The Developmental Behaviour Checklist – Parent
behaviours scales (examining communication, (Einfeld & Tonge , ), a validated measure

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Table 2 Additional participant information from biological reviews (conducted between time  and ) for .% of participants with SID and
.% of participants with PID – frequency (percentage of sample)

Level of ID

SID PID

Spastic quadriplegia Yes 19 (19.6%) 13 (72.2%)

Multiple disability No 40 (41.7%) 2 (11.1%)
Minor 16 (16.7%) 1 (5.6%)
Moderate 23 (24.0%) 2 (11.1%)
Major 17 (17.7%) 13 (72.2%)
Epilepsy Yes 50 (52.6%) 12 (68.7%)
Examples of reported cause of disability Autism, cerebral palsy, Down syndrome, Cerebral palsy, perinatal,
seizures, unknown prematurity, unknown

ID, intellectual disability; SID, severe intellectual disability; PID, profound intellectual disability.

of psychopathology in young people with ID (Hast- strong correlations between different parents
ings et al. ; Dekker et al. ; Einfeld & Tonge (ICC = .), different professional carers
), was completed by parents or paid carers (ICC = .), and parents and professional carers
who knew the young person well (i.e. cared for over -week periods (ICC = .; Einfeld & Tonge
them on a daily basis) at times –. At time , ), reducing the concern regarding changing
parents or caregivers completed the Developmental respondents.
Behaviour Checklist – Adult (Mohr et al. ,
). The Adult checklist contained  new items
Data analyses
and one Parent-deleted item; however, for the
purpose of this analysis, the additional items were Differences between people with severe and pro-
not included in the analysis and a prorated value found degrees of ID were analysed by examining
was used for the missing item (Einfeld et al. a). DBC mean item score (MIS) and sub-scale MIS,
On both checklists, each item was rated as follows: proportion of items (positively) (PIC) and the
not true, somewhat true or very true. Information intensity index (i.e. the proportion of positively
from a Total Behaviour Problem Score and checked items that are scored ) of the sub-scales,
five sub-scales (Self-absorbed, Disruptive, across the four time periods. Use of these measures
Communication Disturbance, Social Relating and provides greater information regarding how scores
Anxiety) was analysed. may be differentially attributable to either numbers
At time , questionnaires were completed by of items observed or intensity of behaviour prob-
paid carers for .% of participants with severe lems (Taffe et al. ). Hence, a high total score or
ID and .% of the participants with profound MIS on an assessment such as the DBC could
ID. At time , this increased to % for partici- either be attributed to selection of a large number
pants with severe ID and % of participants with of items at low intensity, or selection of a smaller
profound ID. The remaining questionnaires were number of items at higher levels of intensity.
completed by family members at both times. While Change over time was analysed by random effects
this indicates that respondents did change over regression. The outcome of level of ID as a linear
time and suggests that respondents within groups function of time and age was analysed first. The
may have changed (i.e. different professional carers time-dependent outcomes of MIS, PIC and inten-
may have completed the questionnaire at different sity index were modelled as linear functions of the
times), reliability data for the Developmental time-dependent variable age and the non-time-
Behaviour Checklist – Parent have indicated dependent variables gender and degree of ID.

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Results be attributed to a lower number of items being

checked.
The results in Tables  and  show several differing
patterns in item scoring for people with severe and
profound IDs. From the regression analyses, it can
Discussion
be seen that there was no significant difference
based on gender across all sub-scales. MIS were It is evident from this analysis that there are differ-
significantly lower for people with profound ID on ences in behaviour and emotional problems
the whole scale and on all sub-scales with the between people with severe ID and people with
exception of Social Relating. The lower MIS was profound ID. A previous study by Einfeld et al.
attributed to lower PIC, and not to lower intensity, (a) showed that mean total behaviour scores
except in relation to the Disruptive sub-scale, for on the DBC decreased significantly over time for all
which responses for people with profound ID were groups with ID, and that the combined group of
also at a less intense level than for people with people with severe and profound levels of disability
severe ID. declined more slowly than those with moderate or
The effect of degree of ID on change over time mild ID. In this study, this finding was further
was analysed. A significant decrease in MIS was explored. This study has the limitation of having a
found for people with severe ID (-. per year, small number of people with profound ID com-
P = .), but not for people with profound ID. pared to those with severe ID and has the challenge
While PIC scores were generally higher for of accurately assessing severe and profound levels of
people with severe ID than people with profound ID. A strength is that individuals have been studied
ID, this trend was much less consistent when over a -year period, from childhood into adult-
looking at the intensity index scores. Instability of hood. Examining sub-scale scores according to PIC
scores can be seen for people with profound ID, for and the intensity index, as introduced by Taffe et al.
example the intensity index varied considerably over (), served as a valuable way of exploring, in
time in no clear direction for many of the sub-scales greater detail, what is happening for populations, in
(e.g. Anxiety sub-scale varied respectively across particular, those people with profound ID.
time –: ., ., . and .). It was found that although the MIS for people
Consistently, low scores were recorded for the with severe ID did decrease significantly over time,
Disruptive and Communication Disturbance sub-scales the scores for people with profound ID did not.
for people with profound ID. However, while the People with profound ID scored lower than people
low scores on the Disruptive sub-scale can be attrib- with severe ID on MIS across all time points, with
uted to low PIC and intensity index, on the Com- this usually attributable to the checking of fewer
munication Disturbance sub-scale fewer items were items on the checklist. However, when items were
checked (e.g. talking to self and confusing pronouns endorsed, intensity was not rated as significantly
were never selected), but of the small number that different between the groups.
were selected, .% of them were rated as being of The finding that people with profound ID display
high intensity (e.g. not mixing with own age group fewer disruptive behaviours than people with severe
was more frequently rated as very true than some- ID may have positive or negative aspects. Fewer
what or sometimes true). For the Social Relating sub- disruptive behaviours means less added impairment.
scale, MIS, PIC and intensity index were relatively However, it may relate to greater passivity and,
high in comparison with the Communication Distur- hence, have negative implications for individuals
bance and Disruptive behaviour sub-scales, but not who do not solicit the attention of people around
significantly different between those with severe and them (Seys et al. ).
profound ID. The question may be asked whether these people
When looking at the items across the entire have lower scores on the DBC because they have
DBC, MIS decreased significantly over time and fewer behaviour and emotional problems or because
was always lower for people with profound ID than the items on the scale are insufficient markers for
people with severe ID. This lower score can problems that they may experience. Some behav-

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Table 3 Means and SD of DBC summary measures for people with SID and PID by sub-scale and degree of intellectual disability

Scale and intellectual disability level

Communication
Journal of Intellectual Disability Research

DBC total mean Self-absorbed Disruptive disturbance Social relating Anxiety

Measure Time SID PID SID PID SID PID SID PID SID PID SID PID

MIS 1 0.49 (0.25) 0.24 (0.12) 0.71 (0.38) 0.36 (0.23) 0.39 (0.29) 0.09 (0.11) 0.43 (0.35) 0.12 (0.13) 0.57 (0.37) 0.54 (0.32) 0.48 (0.28) 0.29 (0.20)
2 0.47 (0.27) 0.30 (0.21) 0.66 (0.41) 0.40 (0.33) 0.39 (0.31) 0.15 (0.21) 0.39 (0.32) 0.16 (0.17) 0.53 (0.37) 0.64 (0.38) 0.46 (0.29) 0.36 (0.26)
3 0.46 (0.24) 0.30 (0.15) 0.65 (0.38) 0.43 (0.28) 0.34 (0.27) 0.14 (0.10) 0.40 (0.31) 0.16 (0.12) 0.57 (0.33) 0.72 (0.38) 0.47 (0.28) 0.33 (0.18)
4 0.44 (0.25) 0.26 (0.18) 0.62 (0.36) 0.33 (0.24) 0.43 (0.34) 0.28 (0.21) 0.32 (0.26) 0.12 (0.18) 0.62 (0.41) 0.52 (0.35) 0.49 (0.33) 0.28 (0.24)
PIC 1 0.34 (0.15) 0.17 (0.08) 0.47 (0.22) 0.24 (0.15) 0.29 (0.19) 0.08 (0.09) 0.29 (0.22) 0.08 (0.08) 0.41 (0.24) 0.37 (0.21) 0.35 (0.19) 0.21 (0.14)
S. Forster et al. • Behavioural differences: severe and profound ID

2 0.34 (0.17) 0.22 (0.15) 0.45 (0.24) 0.28 (0.22) 0.29 (0.21) 0.13 (0.17) 0.27 (0.21) 0.11 (0.12) 0.39 (0.25) 0.46 (0.25) 0.35 (0.20) 0.28 (0.20)
3 0.33 (0.15) 0.23 (0.10) 0.45 (0.22) 0.31 (0.18) 0.27 (0.19) 0.12 (0.08) 0.29 (0.20) 0.12 (0.07) 0.42 (0.21) 0.51 (0.26) 0.34 (0.18) 0.28 (0.14)
4 0.32 (0.16) 0.20 (0.13) 0.43 (0.22) 0.25 (0.17) 0.34 (0.22) 0.22 (0.15) 0.24 (0.18) 0.09 (0.10) 0.46 (0.27) 0.51 (0.25) 0.36 (0.21) 0.22 (0.16)
II 1 0.41 (0.21) 0.46 (0.24) 0.48 (0.25) 0.52 (0.24) 0.31 (0.26) 0.12 (0.19) 0.43 (0.36) 0.53 (0.45) 0.35 (0.32) 0.51 (0.41) 0.37 (0.28) 0.39 (0.30)
2 0.35 (0.19) 0.34 (0.16) 0.39 (0.23) 0.41 (0.24) 0.28 (0.26) 0.10 (0.15) 0.38 (0.34) 0.43 (0.46) 0.34 (0.28) 0.39 (0.27) 0.29 (0.27) 0.28 (0.19)
3 0.34 (0.19) 0.27 (0.17) 0.38 (0.22) 0.29 (0.24) 0.20 (0.23) 0.13 (0.18) 0.30 (0.30) 0.29 (0.39) 0.33 (0.29) 0.37 (0.24) 0.32 (0.26) 0.17 (0.19)
4 0.36 (0.19) 0.36 (0.17) 0.41 (0.26) 0.23 (0.13) 0.23 (0.28) 0.20 (0.23) 0.33 (0.35) 0.36 (0.48) 0.32 (0.32) 0.32 (0.37) 0.33 (0.28) 0.30 (0.33)

DBC, Developmental Behaviour Checklist; SID, severe intellectual disability; PID, profound intellectual disability; MIS, mean item score; PIC, proportion of items checked; II, intensity

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Table 4 Longitudinal regressions of MIS,

MIS PIC II PIC and II on age, gender and ID level
for sub-scales

DBC mean
Age -0.004** -0.002 -0.005**
Female -0.002 -0.003 0.011
ID level -0.210*** -0.145*** 0.021
Constant 0.533*** 0.361*** 0.441***
Self-absorbed
Age -0.009*** -0.004*** -0.006*
Female -0.020 -0.019 0.023
ID level -0.307*** -0.199*** -0.012
Constant 0.820*** 0.527*** 0.501***
Disruptive
Age 0.003 0.004** -0.002
Female 0.031 0.013 0.035
ID level -0.251*** -0.179*** -0.139**
Constant 0.321*** 0.227*** 0.281***
Communication disturbance
Age -0.006** -0.002 -0.007
Female -0.008 -0.008 -0.016
ID level -0.262*** -0.185*** 0.054
Constant 0.483*** 0.313*** 0.497***
Social relating
Age 0.005 0.004* -0.003
Female -0.001 0.003 -0.004
ID level 0.029 -0.002 0.105
Constant 0.482*** 0.341*** 0.392***
Anxious
Age -0.000 0.000 -0.003
Female 0.019 0.011 0.010
ID level -0.115** -0.109** -0.030
Constant 0.467*** 0.342*** 0.371***

* P < .; ** P < .; *** P < ..

MIS, mean item score; PIC, proportion of items checked; II, intensity index; ID,
intellectual disability; DBC, Developmental Behaviour Checklist.

iours, such as those requiring speech or indepen- munication in a person with profound ID who has
dent mobility, may be clearly unachievable for many few other potentially communicative expressions.
people with profound ID. This is the likely explana- Given that people with severe and profound ID
tion for the low levels of problematic communica- do display different behaviour and emotional prob-
tion behaviours. lems, it is recommended that caution is exercised
New items could be developed as additions to the when combining the groups into a single category
DBC that are more relevant for people with pro- within research. The two groups should be consid-
found ID. For example, these could give particular ered separately in interpreting both research
emphasis to distress from physical discomfort. results and implications for clinical and policy
Furthermore, these findings highlight the need for development.
clinicians to carefully examine the patterns of
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