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Journal of Intellectual Disability Research

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Blackwell Science, LtdOxford, UKJIRJournal of Intellectual Disability Research-Blackwell Science Ltd, Original ArticleEmotional and behavioural needs of childrenE. Emerson et al.

Emotional and behavioural needs of children and


adolescents with intellectual disabilities in an
urban conurbation
E. Emerson, J. Robertson & J. Wood
Institute for Health Research, Lancaster University, UK

Abstract teacher; () social deprivation, male gender, less


severe ID and having fewer physical or sensory
Background Over the past decade, increased atten-
impairments were associated with antisocial and dis-
tion has been paid to identifying and responding to
ruptive behaviour; and () more severe ID and addi-
the emotional and behavioural needs of children and
tional impairments were associated with anxiety,
adolescents with intellectual disability (ID). The aims
communication disturbance, social relating and self-
of the present study were to add to this body of
absorbed behaviours.
knowledge by identifying factors associated with
Conclusions These results identify a range of risk
emotional and behavioural needs among a sample
factors associated with behavioural and emotional
of children with ID drawn from a large urban
problems experienced by children with ID.
conurbation.
Method Information was collected by postal ques- Keywords children, mental health, social
tionnaire (or interview for family carers who did not deprivation
have English as their first language) from teachers
and from family carers of  children administra- Over the past decade, increased attention has been
tively identified as having ID (% of all children paid to identifying and responding to the emotional
with ID). and behavioural needs of children and adolescents
Results Results indicated that: () the administrative with intellectual disability (ID) (Lindsey ; RCP
prevalence of moderate but not severe ID was asso- ; Tonge ; Dykens ; Foundation for
ciated with social deprivation whereas the prevalence People with Learning Difficulties ). The avail-
of severe but not moderate ID appeared to be asso- able evidence suggests that young people with ID are
ciated with ethnicity; () % of children scored at a much greater risk than their non-ID peers of a
above the threshold on the Developmental Behaviour range of emotional and behavioural disorders, includ-
Checklist (DBC)–primary family carer, and % of ing formally diagnosed psychiatric disorders.
children scored above the threshold on the DBC- Emerson (a), for example, reported the results
of a secondary analysis of the Office for National
Correspondence: Eric Emerson, Institute for Health Research,
Statistics survey of the mental health of children and
Lancaster University, Lancaster LA YT, UK. adolescents in Great Britain (Meltzer et al. ). In
E-mail: eric.emerson@lancaster.ac.uk a nationally representative sample drawn from
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Journal of Intellectual Disability Research      
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E. Emerson et al. • Emotional and behavioural needs of children

England, Scotland and Wales, he reported an overall Special Educational Needs (SEN) of all school-age
prevalence rate of % for ICD- diagnoses of psy- children, for whom the LEA had responsibility. The
chiatric disorder among - to -year-old children sampling frame included a total of  children in
with ID (compared with % among children who did the - to -age group identified as having a primary
not have ID). SEN of moderate learning difficulty (MLD; n = ),
Similar prevalence rates for International Classifi- severe learning difficulty (SLD; n = ) or complex
cation of Diseases (v) (ICD-) diagnoses have learning difficulty (CLD; n = ). This represents
also been reported in a recent Norwegian study .% of the school age population.
(Stromme & Diseth ). In addition, a number of We attempted to collect information on the mental
studies that have used rating scales of symptom sever- health needs of children from both the child’s teacher
ity have reported prevalence rates for significant emo- (for a % random sample of children) and from
tional and/or behavioural needs of between % and family carers, typically parents or, where appropriate,
% among samples of children in Australia (Einfeld other family members (on the full sample).
& Tonge a,b; Tonge & Einfeld ), South
Africa (Molteno et al. ), Scotland (Hoare et al.
Procedure and measures
), England (Cormack et al. ; Hastings &
Mount ) and Finland (Linna et al. ). Information was collected from teachers and from
A number of factors associated with variation in family carers whose first language was English by
the prevalence of psychopathology among children anonymous postal questionnaire. Information from
with ID have been identified. These included child family carers who did not have English as their first
characteristics such as age, gender, severity of ID, language was collected by interview in the preferred
communication skills, physical disability and syn- language of the carer.
dromes associated with ID (Einfeld & Tonge b; Information on basic demographic characteristics
Hoare et al. ; Cormack et al. ; Stromme & of the young person (e.g. age, gender, ethnicity), the
Diseth ; Hastings & Molteno et al. ; Mount severity of developmental delay and additional
; Emerson a); family characteristics includ- impairments experienced by the child (e.g. epilepsy,
ing social deprivation, family composition and func- sensory and motor impairments) were collected. The
tioning (Emerson a); the use of punitive child severity of developmental delay and additional
management strategies (Emerson a); life events impairments were assessed using the communication
(Hatton & Emerson, in press); and the level of psy- and physical development subscales of the American
chological distress experienced by family carers Association on Mental Retardation Adaptive Behavior
(Hoare et al. ; Emerson a). Scale – School Version (ABS: Lambert, Nihira &
The aims of the present study were to add to this Leland ) supplemented by specific items
body of knowledge by identifying factors associated from the ABS relating to epilepsy and sensory
with the prevalence of emotional and behavioural impairments.
disorders among a sample of children with ID drawn ‘Deprivation’ is a major determinant of health. For
from a large urban conurbation. example, lower income levels tend to lead to poor
levels of nutrition, poor housing conditions, and
Method inequitable access to healthcare and other services.
Ill health may follow. A range of indicators have been
Sampling
developed in recent years to assist in assessing and
The study was undertaken in the inner city of a large comparing ‘deprivation’ or poverty at a local level.
urban conurbation in England. The administrative For example, widely used indicators have included
area (population approximately  ) was the Jarman, Townsend and Carstairs scores, which
marked by significant levels of social deprivation with combine a range of  census indicators to high-
 (%) of the  electoral wards in the city lying light relative deprivation. In , the Department
within the most deprived % of wards in England. of the Environment, Transport and Regions (DETR)
The sample was drawn from a Local Education published the Index of Multiple Deprivation 
Authority (LEA) database that recorded the primary (IMD ). This updated set of deprivation scores
©  Blackwell Publishing Ltd, Journal of Intellectual Disability Research , ‒
Journal of Intellectual Disability Research      
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E. Emerson et al. • Emotional and behavioural needs of children

for English wards, using up-to-date data, is based on  electoral wards in the sample. Ward-based preva-
the premise that deprivation is made up of separate lence rates for MLD were strongly correlated with
dimensions (DETR a,b). At the local electoral ward-level indicators of social deprivation (Spear-
ward level, the IMD  comprises an overall dep- man’s r = . P < . for overall IMD ;
rivation score, as well as six domains of deprivation. Spearman’s r = . P < . for IMD  health
The six domains focus on income, employment, domain). The administrative prevalence of MLD was
health, education, housing and access to services .% across the  most deprived wards compared
deprivation. Within the analysis, the survey respon- with .% across the  least deprived wards. There
dent’s home address postcodes could be linked to a were no significant associations between the admin-
current ward code, and thus to a deprivation score. istrative prevalence of SLD at ward level and indica-
The research focused on the overall IMD  score tors of social deprivation (Spearmans r = -. n.s.
and health domain score. for overall IMD ; Spearmans r = -. n.s. for
Information on the extent, nature and severity of IMD  health domain).
the child’s emotional and behavioural needs was col-
lected using the Developmental Behaviour Checklist
Response rate
(DBC: Einfeld & Tonge ). The DBC is a
problem-severity-rating scale comprised of two par- Information was collected on a total of  children
allel forms: a -item scale completed by the child’s and young people. This included  questionnaires
primary family carer (DBC-P) and a -item scale returned by, or interviews undertaken with family
completed by teachers (DBC-T). Both forms have carers and  questionnaires returned by teachers.
been reported to have good internal consistency, Both carers and teachers provided information for 
good to high interrater (r = . - .) and test- young people. These figures represent % of all chil-
retest reliability (r = . - .), to correlate well dren identified on the SEN database as having an ID
with clinician ratings and ABS Pt  scores and to as their primary SEN. The overall response rates were
discriminate between cases and noncases (Dekker, % for family carers and % for teachers (for
Nunn & Koot ; Einfeld & Tonge ). The whom a % sample was sought). The calculation of
DBC-P and T both give total scores (with a desig- ward-level response rates for postal questionnaires
nated cut-off for ‘caseness’) and five subscale scores completed by family carers indicated a significant
for disruptive/antisocial, self-absorbed, communica- positive association between response rate and depri-
tion disturbance, anxiety, and social relating. vation (i.e. greater response rates from family carers
Information on the level of psychological distress living in more deprived areas; Spearmans r = .
stress experienced by the primary family carer was P < . for IMD  health domain). Response
collected using the GHQ- (Goldberg & Williams rates for both parents and teachers were also influ-
). enced by the type of SEN and type of school
(Table ).

Results
Agreement between carers and teachers
Analysis
The extent of agreement between teachers and family
Because of the non-normality of the distribution of carers was compared for the  children for whom
many variables, nonparametric analyses were under- both sets of data were available. Levels of agreement
taken throughout. To partially compensate for the were high with regard to the demographic character-
large number of comparisons made, only results sig- istics (% agreement: –%) and ABS items (%
nificant with two-tailed a < . are reported. agreement: –%, communication r = ., physi-
cal development r = .). Levels of agreement were
markedly lower, however, on the DBC (% agreement
Administrative prevalence of intellectual disabilities
for caseness = %, Kappa = .). Agreement
The administrative prevalence of intellectual disabil- (Spearman’s r) for the total score and subscale scores
ities (SLD and MLD) was determined for each of the were: total r = ., P < .; disruptive/antisocial
©  Blackwell Publishing Ltd, Journal of Intellectual Disability Research , ‒
Journal of Intellectual Disability Research      
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E. Emerson et al. • Emotional and behavioural needs of children

r = ., P < .; self-absorbed r = . P < .; Participant characteristics


communication disturbance r = . P < .; anx-
Information on the demographic characteristics, abil-
iety r = ., P < .; social relating r = .,
ities and needs of the participants is summarized in
P < ..
Table .
There were a number of associations between SEN
Table 1 Response rate by type of SEN and type of school category and the demographic characteristics of the
children. While the numbers of participating children
with SLD were relatively constant across the age
Response rate
range, as age increased a greater number of partici-
pants were identified with a primary SEN of MLD.
Variable Parents Teachers
As a result, there were significant differences between
the mean ages of children with MLD and SLD (mean
Type of SEN
. years and . years, respectively; Mann–
MLD 28% 49%
SLD 37% 26% Whitney z = ., P < .). Gender varied across
CLD 59% 61% SEN categories with the proportion of boys being
c2 = 24.1, c2 = 24.5, % among children with a primary SEN of CLD,
d.f. = 1, d.f. = 1, % for MLD and % for SLD (c2 = ., d.f. = ,
P < 0.001 P < 0.001
P < .). Finally, ethnicity was associated with
Type of school
Mainstream primary 47% 61% SEN category (c2 = ., d.f. =  P < .) with a
Mainstream secondary 28% 47% notably high proportion of South Asian children
MLD 27% 50% being categorized as SLD (% compared with %
SLD 36% 22% among other ethnic groups).
Other special school 28% 21%
As expected, children with a primary SEN of
c2 = 25.4, c2 = 35.6,
d.f. = 4, d.f. = 4, SLD showed greater delay in communication
P < 0.001 P < 0.001 (Kruskal–Wallis c2 = ., d.f. = , P < .) and
physical development (Kruskal–Wallis c2 = .,

Table 2 Characteristics of participants

Variable % Participants Variable % Participants

Age Functional sensory and physical impairments


5–11 49% Vision 24%
12–16 51% Hearing 16%
Ambulation 7%
Gender Epilepsy 9%
Boys 65%
Girls 35% Communication
Nonverbal 13%
Ethnicity Type of primary
White 74% SEN
South Asian 14% MLD 71%
Black 7% SLD 25%
Other 5% CLD 4%
Type of school
Mainstream primary 12%
Mainstream secondary 10%
MLD 54%
SLD 20%
Other special school 4%

©  Blackwell Publishing Ltd, Journal of Intellectual Disability Research , ‒
Journal of Intellectual Disability Research      
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E. Emerson et al. • Emotional and behavioural needs of children

d.f. = , P < .) than children with either MLD Table 3 Candidate predictor variables used in logistic regression
or CLD. There were no significant differences analyses

between the latter two groups. These effects held


true when any effects as a result of age differences Child characteristics Other
were taken into account (communication corrected
odds ratio ., P < .; physical development cor- Age Mainstream vs. special school
rected odds ratio ., P < .) Differences in Gender Carer caseness on GHQ*
prevalence rates between SEN groups were statisti- Ethnicity Neighbourhood deprivation
Special educational needs
cally significant for visual impairments (c2 = .,
categorization (SLD, MLD)
d.f. = , p = .) and epilepsy (c2 = ., d.f. = , Communication ability
P < .), but not for hearing impairments Physical development
(c2 = ., d.f. = , n.s). Ambulation
Sensory impairment
Epilepsy
Emotional and behavioural problems
*Only used in DBC-P analyses.
Overall, % of participating children scored above
the ‘caseness’ threshold on the DBC (DBC-P %;
DBC-T %). Because of the relatively poor levels of
agreement between the DBC-P and DBC-T (see
Table 4 Results of logistic regression – dependent variable caseness
above), the two sets of data were analysed separately. on DBC-P
Logistic regression (forward stepwise conditional
variable entry, p entry < ., p removal P < .) was
Corrected
employed to assess the unique association between Variable odds ratio P
predictor variables of interest and caseness on the
DBC-P and DBC-T. Predictor variables of interest
DBC-P (n = 356)
are listed in Table . The results are summarized in Model c2 = 101.8, d.f. = 6,
Table  for the DBC-P, analysis for the DBC-T was P < 0.001, Nagelkerke
not significant at a < . (c2 = ., d.f. = , R2 = 0.332
P = .) Ambulant 26.5 <0.001
Family carer above threshold 4.7 <0.001
Logistic regression was also employed to assess the
on GHQ
unique association of variables to subscale ‘caseness’ Child has more restricted 2.4 0.002
(operationally defined as scoring above the normative communication
th centile). The results of these analyses are pre- Presence of visual impairment 2.2 0.011
sented in Table . Ethnicity – white 2.2 0.005
More restricted physical 1.9 0.019
These results suggest two distinct patterns of rela-
development
tionships: () with social deprivation, male gender
and less severe ID being associated with antisocial
and disruptive behaviour; and () more severe ID and
additional impairments being associated with anxiety,
communication disturbance, social relating and self-
Discussion
absorbed behaviours. The association between family
carer scores on the GHQ and DBC scores was fur- In summary, the results of the present study indicated
ther investigated by examining correlations between that: () the administrative prevalence of moderate
carer GHQ and DBC-P and, for the  children for but not severe ID was associated with social depriva-
whom data was available from both family carers and tion whereas the prevalence of severe but not moder-
teachers, the DBC-T. The results of these analyses ate ID appeared to be associated with ethnicity; ()
are presented in Table . As can be seen, the associ- % of children scored above the threshold on the
ations were of similar magnitude with the exception DBC-P and % of children scored above the thresh-
of the anxiety subscale. old on the DBC-T; () social deprivation, male gen-
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Journal of Intellectual Disability Research      
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E. Emerson et al. • Emotional and behavioural needs of children

Table 5 Results of logistic regression – dependent variable caseness on DBC subscales

Variable Corrected odds ratio P

Disruptive/antisocial DBC-P (n = 356)


Model c2 = 81.8, d.f. = 6, P < 0.001, Nagelkerke R2 = 0.289
Ambulant 13.14 <0.001
Family carer above threshold on GHQ 3.56 <0.001
Greater social deprivation (IMD 2000 health domain) 2.46 0.001
No visual impairment 2.44 0.008
More restricted communication 2.38 0.006
Primary SEN of MLD 2.34 0.007
Disruptive/antisocial DBC-T (n = 228)
Model c2 = 13.4, d.f. = 2, P < 0.01, Nagelkerke R2 = 0.076
Not belonging to South Asian ethnic group 3.49 0.020
Male gender 2.27 0.007
Anxiety DBC-P (n = 356)
Model c2 = 44.3, d.f. = 4, P < 0.001, Nagelkerke R2 = 0.170
Ambulant 5.75 <0.001
Family carer above threshold on GHQ 2.80 <0.001
Female gender 2.42 0.002
More restricted physical development 2.19 0.004
Anxiety DBC-T (n = 228)
Model c2 = 23.7, d.f. = 3, P < 0.001, Nagelkerke R2 = 0.137
Presence of visual impairment 2.36 0.020
More restricted communication 2.22 0.022
Not having primary SEN of MLD 2.17 0.048
Communication disturbance DBC-P (n = 356)
Model c2 = 64.5, d.f. = 4, P < 0.001, Nagelkerke R2 = 0.230
Ambulant 14.64 <0.001
Family carer above threshold on GHQ 3.45 <0.001
Presence of visual impairment 2.22 0.013
More restricted physical development 2.03 0.006
Communication disturbance DBC-T (n = 228)
Model c2 = 42.8, d.f. = 4, P < 0.001, Nagelkerke R2 = 0.257
Ambulant 26.01 0.004
More restricted communication 5.10 <0.001
Not having primary SEN of MLD 3.89 0.003
Greater social deprivation (IMD 2000 health domain) 2.23 0.024
Self-absorbed DBC-P (n = 356)
Model c2 = 79.4, d.f. = 5, P < 0.001, Nagelkerke R2 = 0.274
Family carer above threshold on GHQ 3.42 <0.001
More restricted physical development 2.44 0.001
More restricted communication 2.29 0.003
Presence of visual impairment 2.22 0.011
Belonging to white ethnic group 2.15 0.006
Self-absorbed DBC-T (n = 228)
Model c2 = 29.3, d.f. = 1, P < 0.001, Nagelkerke R2 = 0.173
More restricted communication 5.49 <0.001
Social relating DBC-P (n = 357)
Model c2 = 61.5, d.f. = 5, P < 0.001, Nagelkerke R2 = 0.211
Family carer above threshold on GHQ 3.61 <0.001
Having a primary SEN of MLD 2.34 0.001
More restricted communication 2.09 0.006
More restricted physical development 1.84 0.020
Older age 1.79 0.018
Social relating DBC-T (n = 228)
Model c2 = 17.5, d.f. = 2, P < 0.001, Nagelkerke R2 = 0.110
More restricted communication 4.32 <0.001
Older age 2.44 0.015

GHQ caseness was not included in DBC-T analyses due to large amount of missing data.

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Journal of Intellectual Disability Research      
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E. Emerson et al. • Emotional and behavioural needs of children

Table 6 Rank-order correlation between family carer GHQ score family carers may have different views on the extent
and DBC-P and DBC-T subscales to which a child’s behaviour is problematic, views that
are determined in part by the social and environmen-
Subscale DBC-P (n = 386) DBC-T (n = 75) tal consequences of the behaviours. Finally, teachers
and family carers may be using different reference
points for making judgements about the extent to
Total 0.34 0.23
Disruptive/anti-social 0.28 0.30 which particular acts are unusual or problematic
Self-absorbed 0.33 0.34 (Shaw et al. ).
Communication 0.28 0.19 The present study found that DBC scores were
disturbance associated with social deprivation, a wide range of
Anxiety 0.31 0.05
child characteristics and the mental health status of
Social relating 0.30 0.22
the child’s primary family carer. It should be noted,
however, that most of these associations were specific
to particular subscales of the DBC, rather than being
associated with psychopathology in general.
der, less severe ID and having fewer physical or While a study using the DBC failed to find any
sensory impairments was associated with antisocial association between indicators of social deprivation
and disruptive behaviour; and () more severe ID and and the prevalence of child psychopathology (Hoare
additional impairments was associated with anxiety, et al. ), the present results are consistent with the
communication disturbance, social relating and self- results of studies involving children who do and do
absorbed behaviours. not have ID (e.g. Meltzer et al. ; Emerson
However, these results do need to be treated with a). This result is of significance given the asso-
a certain degree of caution. First, while the overall ciation between social deprivation and the prevalence
response rate (%) is acceptable for postal surveys, of mild/moderate ID (Roeleveld et al. ; Leonard
it does potentially introduce bias in both the deter- & Wen ; Emerson ).
mination of prevalence rates and in the identification The associations between child characteristics and
of associations between DBC scores and other vari- DBC scores are broadly consistent with the results of
ables. Second, the study was conducted in an area of previous research in indicating that: Disruptive/Anti-
considerable social deprivation, a factor which may social Behaviour is associated with male gender
moderate the associations between the variables (Stromme & Diseth ; Hastings & Mount ;
investigated (cf. Emerson b). Third, common Molteno et al. ) and less severe ID (Einfeld &
with the vast majority of research conducted in this Tonge b); Anxiety is associated with physical
field, the study was undertaken on an administra- disability (Cormack et al. ; Hastings & Mount
tively defined sample of young people with ID. ), communication difficulties (Einfeld & Tonge
Finally, the relatively low levels of agreement between b; Molteno et al. ) and more severe ID.
the teacher and family carer ratings do pose some Communication Disturbance is associated with
problems in the interpretation of the present results. poorer communication skills (Molteno et al. );
However, it should be noted that low levels of Self-Absorbed behaviours are associated with more
agreement have previously been reported for the severe ID (Einfeld & Tonge b; Molteno et al.
DBC (Dekker et al. ; Einfeld & Tonge ) and ), poorer communication skills (Molteno et al.
other informant-based measures of childhood psy- ) and physical disability (Hastings & Mount
chopathology (e.g. Shaw et al. ; Tasse & Lecav- ). In addition, the present study identified eth-
alier ). These low levels of agreement may reflect nicity and visual impairment as important predictor
the operation of at least three factors. First, there is variables.
evidence to suggest that problematic behaviours may The strong association between the mental health
be situationally specific (i.e. are more likely to occur status of the child’s primary family carer (as mea-
either at home or at school; cf. Achenbach et al. sured on the GHQ) and child psychopathology is
). As such, family carers and teachers will have consistent with previous research (e.g. Quine & Pahl
access to different information. Second, teachers and , ; Sloper et al. ; Blacher et al. ;

©  Blackwell Publishing Ltd, Journal of Intellectual Disability Research , ‒
Journal of Intellectual Disability Research      
23
E. Emerson et al. • Emotional and behavioural needs of children

Stores et al. ; Hastings ; Emerson b). disabilities. Journal of Intellectual Disability Research ,
This association does not, of course, imply a specific –.
causal relationship between child and carer mental Emerson E. (b) Mothers of children and adolescents
with intellectual disabilities: social and economic situa-
health. Such effects may be unidirectional in either
tion, mental health status and self-assessed social and
direction, bidirectional or reflect the operation of a psychological impact of child’s difficulties. Journal of
third variable or set of variables (e.g. shared geno- Intellectual Disability Research , –.
type, social deprivation) that are related to both. Emerson E. () Children, families, poverty and
Appropriately conducted experimental and longitu- mental health. Journal of Intellectual and Developmental
dinal research is likely to help untangle such effects. Disability (in press).
Foundation for People with Learning Difficulties ()
Count Us In: Meeting the Mental Health Needs of Children
with Learning Difficulties. Foundation for People with
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Journal of Intellectual Disability Research      
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©  Blackwell Publishing Ltd, Journal of Intellectual Disability Research , ‒