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Research in Developmental Disabilities 31 (2010) 410–415
Contents lists available at ScienceDirect
Research in Developmental Disabilities
The role of ethnicity in clinical psychopathology and care pathways of
adults with intellectual disabilities
Elias Tsakanikos a,*, Jane McCarthy a, Eugenia Kravariti b, Paul Fearon b, Nick Bouras a
a Estia Centre, Institute of Psychiatry, King’s College London, 66 Snowsfields, London SE1 3SS, UK
b NIHR Biomedical Research Centre for Mental Health, Institute of Psychiatry, King’s College London, UK
A R T I C L E I N F O
A B S T R A C T
Article history:
The objective of this study was to explore whether people with intellectual disability from
Received 9 September 2009
ethnic minority groups have higher rates of mental health problems and access different
Accepted 1 October 2009
care pathways than their White counterparts. Clinical and socio-demographic data were
collected for 806 consecutive new referrals to a specialist mental health service for people
Keywords:
with intellectual disabilities in South London. Referrals were grouped according to their
Care pathways
ethnic origin. The analyses showed that there was an over-representation of referrals from
Developmental disability
ethnic minority groups with diagnoses of schizophrenia spectrum disorder. In addition,
Ethnicity
Intellectual disability
Black participants were more likely to have an autistic spectrum disorder. Referrals of
Pervasive developmental disorder
ethnic minority groups were considerably younger than White referrals, and less likely to
Psychopathology
be in supported residences. The results are discussed in the context of cultural and familial
factors in particular ethnic groups that may play an important role in accessing and using
mental health services.
ß 2009 Elsevier Ltd. All rights reserved.
1. Introduction
In the UK, some ethnic minority communities have been found to have an increased incidence of psychotic illness and
access different care pathways to their White counterparts (Bhugra et al., 1997; Fearon et al., 2004, 2006; Morgan, Mallett, &
Hutchinson, 2005). Various psycho-social and cultural factors have been suggested to explain such ethnic effects (e.g. Bhui &
Bhugra, 2002; Gabel, 2004; Hutchinson et al., 1996; Ndetei & Vadher, 1984; Sharpley, Hutchinson, McKenzie, & Murray,
2001). It is important that clinicians and care providers are aware of such effects in order to promote equality and
consistency within the mental health services.
Individuals with intellectual disabilities are at an increased risk of developing mental health problems including
schizophrenia spectrum disorders (e.g. Cooper, Smiley, Morrison, Williamson, & Allan, 2007; Deb, Thomas, & Bright, 2001).
Explanations for this increased vulnerability usually focus on the biological, cognitive, and social deficits that accompany
intellectual disability, and how they may render an individual less able to deal with some of life’s difficulties (Matson & Sevin,
1994). The role of ethnicity in individuals with intellectual disabilities is an area of increasing interest in recent years
(McCarthy, Mir, & Wright, 2008), although there is little evidence on whether certain ethnic groups have an increased
incidence of mental health problems and access different care pathways. The current study was designed to investigate
whether the ethnic differences observed in severe mental illness in general adult mental health (Bhugra et al., 1997; Fearon
et al., 2004, 2006; Morgan et al., 2005) were also present in a large sample of adults with intellectual disabilities.
* Corresponding author. Tel.: +44 20 3228 9745; fax: +44 20 3228 9749.
E-mail address: elias.tsakanikos@kcl.ac.uk (E. Tsakanikos).
0891-4222/$ – see front matter ß 2009 Elsevier Ltd. All rights reserved.
doi:10.1016/j.ridd.2009.10.007

E. Tsakanikos et al. / Research in Developmental Disabilities 31 (2010) 410–415
411
2. Method
2.1. Participants
We included all new referrals (806) to a specialist mental health service for adults with intellectual disabilities in South
East London between 1984 and 2004. All participants fulfilled the eligibility criteria for intellectual disability of having an
IQ below 70 and significant social impairment based on ICD-10 clinical criteria. Participants were grouped according to
their ethnic origin into 3 main groups ‘White’, ‘Black’, and ‘other non-White’. The ‘Black’ group consisted of Black Africans,
African Caribbean and Black British. White British and White other were included into the White group. All others
(including mixed race) went into the ‘other’ group. The reasons for doing this included the fact that, when considered
separately, these ethnic groups had similar findings and so were grouped into these 3 broad groups, in order both to
simplify the analysis and also to maximise statistical power. In the studied areas of South East London (boroughs of
Lambeth, Lewisham and Southwark), the average population proportions by ethnic group are 63.8% White, 25.0% Black, and
11.2% other non-White (Census 2001, ONS). In assigning participants to ethnic groups we used a number of data sources.
The primary source was self-ascribed ethnicity collected through the specifically designed form to gather socio-
demographic information (Bouras & Drummond, 1989). When this information was not available other sources were used
including other informants and case-notes.
2.2. Assessment
Data were collected on a specially designed form (Bouras & Drummond, 1989) to gather both clinical and socio-
demographic information. Clinical diagnoses were made by a psychiatrist following clinical interviews with key
informants and the patients as part of delivering a clinical service. Historical details of early social and communication
problems were obtained from past medical records. Two experienced psychiatrists agreed independently on the diagnosis
by using ICD-10 clinical criteria. The two clinicians were blind to the ethnicity of the patients. The degree of intellectual
disability was coded on ICD-10 criteria into mild (F70), moderate (F71) or severe (F72–73), and the presence of autistic
spectrum disorders by a diagnosis of pervasive developmental disorder (F84). Psychiatric diagnosis was coded to the
following major ICD-10 categories: schizophrenia spectrum disorder (F20–27), personality disorder (F60–69), anxiety
(F40–48), depressive disorder (F32–39), adjustment reaction (F43), and dementia (F00–03). In those referred from other
mental health services with a provisional ICD-10 diagnosis (e.g. schizophrenia or autistic spectrum disorder) the assessing
clinicians reviewed the diagnosis.
2.3. Analysis
Using the statistical package SPSS 15 for Windows, we performed chi-square (x2) tests to examine possible statistical
significant differences in socio-demographic details, and psychiatric diagnoses between the three ethnic groups. In order to
control statistically for the inter-relationship between socio-demographic and clinical variables, we performed a set of
binary logistic regressions (Method: Enter). All the variables showing significant ethnic effects (on the basis of chi-square
tests) were entered in the equation as binary covariates. Ethnicity group (White, Black and non-White) was as the dependant
variable in all subsequent analyses.
3. Results
3.1. Socio-demographic data
Participants were between the ages of 16 and 86 years (mean = 33.6, SD = 13.6), of whom 60% were male and 40% were
female. Table 1 shows the socio-demographic data obtained. Within each ethnic group, the number of participants is given
according to their gender, age, source of referral, and place of residence.
No significant gender differences were observed between the ethnic groups (x2 = 1.41, df = 2, p > 0.10). However there
were statistically significant age differences (x2 = 69.09, df = 8, p < 0.0001) with participants in the ‘Black’ and ‘other’ being
relatively younger than in the ‘White’ group (about 50% <24 years). Significant ethnic differences were found in the source of
referral (x2 = 14.85, df = 6, p = 0.02) with a significantly lower proportion of White participants referred from the mainstream
mental health services (x2 = 4.04, df = 1, p = 0.04).
Significant ethnic differences were found in the place of residence, with a significantly higher proportion (63.6%) of ‘other
non-White’ participants living in family homes (x2 = 8.08, df = 2, p = 0.02). Also, 37.2% of the ‘White’ group were found to live
in supported housing, compared to 29.0% of the ‘Black’ and 23.8% of the ‘other non-White’ groups (x2 = 6.68, df = 2, p = 0.03).
There were no other ethnic differences in place of residence.
3.2. Clinical data
Table 2 presents the proportion of participants within each group according to their degree of intellectual disability, the
presence of autistic spectrum disorders, and their psychiatric diagnoses.

412
E. Tsakanikos et al. / Research in Developmental Disabilities 31 (2010) 410–415
Table 1
Socio-demographic data: the number and percentage of participants in each ethnic group by different socio-demographic measures.
Ethnicity
White n (%)
Black n (%)
Other n (%)
Sex
Male
368 (59.5)
77 (62.1)
42 (66.7)
Female
251 (40.5)
47 (37.9)
21 (33.3)
Age group*
<24
178 (28.8)
56 (45.2)
33 (52.4)
25–34
147 (23.7)
44 (35.5)
18 (28.6)
35–44
133 (21.5)
20 (16.1)
11 (17.5)
45–54
91 (14.7)
4 (3.2)
0 (0.0)
55+
70 (11.3)
0 (0.0)
1 (1.6)
Source of referral*
Primary care
296 (47.8)
49 (39.5)
26 (41.3)
Social services
95 (15.3)
22 (17.7)
4 (6.3)
Mainstream MHS
218 (35.2)
48 (38.7)
33 (52.4)
Others
10 (1.6)
5 (4.0)
0 (0.0)
Place of residence*
Family home
277 (44.7)
58 (46.8)
40 (63.6)
Health service
38 (6.1)
12 (9.7)
2 (3.2)
Independent
74 (12.0)
16 (12.9)
5 (7.9)
Supported housing
230 (37.2)
36 (29.0)
15 (23.8)
Other
0 (0.0)
2 (1.6)
1 (1.6)
* Significant p-value.
No significant difference was found in degree of intellectual disability between the three groups (x2 = 3.09, df = 1,
p > 0.50). However, significant effects were found in both the presence of autistic disorders (x2 = 7.99, df = 2, p = 0.02) and
psychiatric diagnoses (x2 = 24.10, df = 14, p = 0.001). The particular psychiatric diagnoses to show significant between-group
differences were schizophrenia spectrum disorders (White: 15.5%, Black: 23.4%, other non-White: 28.6%; x2 = 9.89, df = 2,
p = 0.007) and dementia (White: 4.2%, Black: 0.8%, other non-White: 0.0%; x2 = 6.04, df = 2, p = 0.05). There were no further
significant differences in psychiatric diagnoses between the ethnic groups (all ps > 0.10). There was also no statistical
significant association between diagnosis of autism and schizophrenia (p > 0.20).
3.3. Logistic regression
Table 3 summarises a set of binary logistic analyses with ethnicity group (White, Black and other non-White) as the
dependant variable in each regression model. The variables showing significant ethnic effects in the previous set of
analyses were entered in the equation as binary covariates, namely, referral from mainstream NHS, living in family home
presence of autistic spectrum disorders, diagnosis of schizophrenia spectrum disorder, diagnosis of dementia and age (see
also Section 2.3).
Table 2
Clinical data: the number and percentage of participants in each ethnic group by different clinical measures.
Ethnicity
White n (%)
Black n (%)
Other n (%)
Degree of intellectual disability
Mild
398 (64.3)
74 (59.7)
45 (71.4)
Moderate
140 (22.6)
29 (23.4)
11 (17.5)
Severe
81 (13.1)
21 (16.9)
7 (11.1)
Autistic spectrum disorder*
No
510 (82.4)
89 (71.8)
53 (84.1)
Yes
109 (17.6)
35 (28.2)
10 (15.9)
Psychiatric diagnosis*
No diagnosis
284 (45.9)
56 (45.2)
29 (46)
Schizophrenia spectrum disorder
96 (15.5)
29 (23.4)
18 (28.6)
Personality disorder
49 (7.9)
7 (5.6)
1 (1.6)
Anxiety disorder
48 (7.8)
9 (7.3)
2 (3.2)
Depressive disorder
57 (9.2)
13 (10.5)
10 (15.9)
Adjustment disorder
39 (6.3)
5 (4.0)
2 (3.2)
Dementia
26 (4.2)
1 (0.8)
0 (0.0)
Others
20 (3.2)
4 (3.2)
1 (1.6)
* Significant p-value.

E. Tsakanikos et al. / Research in Developmental Disabilities 31 (2010) 410–415
413
Table 3
Regression models for ‘White’, ‘Black’ and ‘Other non-White’ group.
Odds ratio
95% CI
p
White
Schizophrenia spectrum disorder
0.46
0.31–0.77
<0.0001
Age
1.06
1.04–1.17
<0.0001
Black
Schizophrenia spectrum disorder
1.70
1.01–2.76
<0.01
Autism
1.55
0.98–2.42
=0.05
Dementia
0.56
0.07–4.33
=0.07
Age
0.95
0.93–0.97
<0.0001
Other non-White
Schizophrenia spectrum disorder
2.21
1.22–4.01
<0.0001
Age
0.95
0.95–0.92
<0.0001
The regression model for the White group was significant (x2 = 73.51, df = 5, p < 0.0001, À2 log likelihood = 799.162) and
accounted for about 13% of the variance (Nagelkerke R2). Diagnosis of schizophrenia spectrum disorder was less likely to be
found in White participants in comparison to other ethnic groups.
The regression model for the Black group was significant (x2 = 42.36, df = 5, p < 0.0001, À2 log likelihood = 649.369) and
accounted for about 9% of the variance (Nagelkerke R2). The highest odd ratio was for diagnosis of schizophrenia spectrum
disorder, which was 1.7 times more likely in the Black group than the other ethnic groups. A diagnosis of autism was also
about 1.5 times more likely in this group although this effect was marginally significant (p = 0.05). The effects of dementia
were not significant (p = 0.07), although young age was a statistically significant variable in this group.
The regression model for the other group was also significant (x2 = 33.83, df = 5, p < 0.0001, À2 log likelihood = 408.113)
accounting for about 10% of the variance (Nagelkerke R2). The highest odd ratio was for diagnosis of schizophrenia spectrum
disorder, which was 2.2 times more likely in this group than the other ethnic groups. Patients of younger age were also more
likely in this group (p < 0.0001).
4. Discussion
This is a large clinical population of adults with intellectual disabilities and is one of the first reported studies to look at
the role of ethnicity in the presentation of psychiatric disorders in this population. The sample population for the study were
almost representative of the population of South East London except for a relative lower representation of the Black ethnic
community with 15.4% for the study group and 25.0% for the local population of this part of London (Census 2001, ONS). As
there was no significant difference found in degree of intellectual disability or gender between the three ethnic groups, it
seems reasonable to assume that ethnic differences cannot be accounted for by one group having more severe intellectual
disabilities or more male patients than another.
4.1. Main findings
The two most commonly diagnosed psychiatric diagnoses for adults with intellectual disabilities were schizophrenia
spectrum disorders (17.7%) and autistic spectrum disorders (19.1%). Within both of these diagnoses, there was a
significant over-representation of ethnic minority groups compared to the White group. Historically there has been a
reported overlap with autism spectrum disorders and schizophrenia spectrum disorders although the current consensus
is that individuals with autism spectrum disorders are not at increased risk for schizophrenia spectrum disorders
(Howlin, 2000) including those with intellectual disabilities (Tsakanikos et al., 2006). It was also found that, despite
these substantial diagnostic differences, ethnic minority participants were less likely than White participants to have
come from supported housing placements. The considerable age difference between ethnic groups appeared to account
for some but not for all of these results.
4.2. Schizophrenia spectrum disorders
Our finding that the Black and other ethnic groups of adults with intellectual disabilities were more likely to have a
diagnosis of schizophrenia spectrum disorders is consistent with what has been found in the general population (Bhugra
et al., 1997; Fearon et al., 2006; Strakowski et al., 1996). It has often suggested (Bhugra et al., 1997; Fearon et al., 2006) that
raised incidences of schizophrenia are not specific to the African-Caribbeans, and that members of other ethnic minority
groups also have an increased likelihood of developing psychosis.
Previous research into specific intellectual disability populations has produced contrasting results. Chaplin, Thorp, Ismail,
Collacott, and Bhaumik (1996) studied a population of adults with intellectual disabilities in Leicestershire and found that
psychiatric diagnoses (particularly that of functional psychosis) were more common among Asians than controls. However,
when functional psychosis was then split into schizophrenia and affective disorder, there were no significant differences

414
E. Tsakanikos et al. / Research in Developmental Disabilities 31 (2010) 410–415
between ethnic groups. In contrast, Cowley et al. (2004) showed a significantly lower prevalence of schizophrenia among
White adults with intellectual disabilities than among those from other ethnic groups. These contrasting results may be
explained by the relatively small sample of patients with schizophrenia reported in Chaplin et al. (only nine Asian and nine
White patients involved). Because a large sample is used in Cowley et al. study (as it is in the current study), it would appear
that ethnic effects in the incidence of schizophrenia are just as apparent in an intellectually disabled population as they are in
the general population. It might therefore be assumed that similar explanations are needed.
4.3. Autistic spectrum disorders
There was also found to be ethnic variation in the diagnosis of autistic spectrum disorders, with an increased incidence
among Black adults with intellectual disabilities. A small amount of previous research has hinted at similar effects. For
example, Goodman and Richards (1995) found both psychotic and autistic disorders to be more common in a group of
second-generation African-Caribbean people than in a predominantly White group of patients. Also, Wing (1993) estimated
that the rate of autistic spectrum disorders in children of Caribbean origin was 6.3/10,000, as compared to 4.4/10,000 for the
rest of the population. However, due to the lack of substantial supporting evidence, an association between ethnicity and
autistic spectrum disorders has remained uncertain.
While genetic factors are known to play an aetiological role, there are also environmental factors to consider (Medical
Research Council, 2001). In the US, Mandell, Listerud, Levy, and Pinto-Martin (2002) have lent socio-cultural explanations to
their finding that African-American children received their diagnosis of autistic spectrum disorder a year and a half later than
White children. While professionals would agree that early diagnosis and intervention are vital to the future development of
the child, there is no evidence to suggest that late diagnoses in ethnic minority groups would cause an increased prevalence
of autistic disorders in adulthood. Although more research is required to identify the factors causing this ethnic disparity, it
should be also noted that the present data suggested that increased rates of autism among the ethnic minorities groups of
adults were accounted by age differences between the patient groups. Previous studies have identified trends towards
diagnosing autism spectrum disorders in younger patients more frequently than in older patients (Fombonne, 1999;
Sturmey & James, 2001). Evidence also suggests that certain autism-related behaviours are more likely to improve in older
patients, as compared to younger patients (Seltzer et al., 2003). Age-related differences in autism may partly reflect a
particular neuro-developmental pattern, such as an accelerated growth in early life and a subsequent decrease in brain
volume in later life (e.g. Aylward, Minshew, Field, Sparks, & Singh, 2002).
4.4. Care pathways
The study demonstrated that, despite high rates of both schizophrenia spectrum disorders and autistic spectrum
disorders, adults from ethnic minorities with intellectual disabilities were under-represented in supported accommodation.
This somewhat contradictory finding may reflect considerable ethnic variations in attitudes, previous experiences, or
perceived appropriateness of the supported services. Our finding that 63.6% of the ‘other non-White’ group lived in family
homes (well above the sample average of 46%) may be accounted for by the traditional Asian extended family, support
networks, and religious reasons to avoid supported services, such as a lack of facilities for washing and purifying, and for
prayer (Fatimilehin & Nadirshaw, 1994). The Black group were less likely than the White group to have been living in the
supported services for adults with intellectual disabilities. Although this was not a statistical significant finding in our study,
similar trends have been noticed in general psychiatric care (Nazroo, 1998). Cultural and familial factors in particular ethnic
groups may play a role in accessing and using mental health services for people with intellectual disability.
4.5. Age
The finding that referrals of adults with intellectual disability from ethnic minority groups were considerably younger
than referrals from White population is likely to be caused by a combination of factors. One explanation is that the age
differences in this sample are representative of the population as a whole. Due to immigration, ethnic minority groups have a
generally younger age structure than the White population: in the 2001 UK census, the White population was found to have
the lowest proportion of people under the age of 16, and the highest proportion over the age of 65 (Census 2001, ONS).
The effect might also be created by social and economic inequalities in the families of adults with intellectual disabilities.
It may be that the families of ethnic minority referrals are less well equipped (financially or otherwise) to access appropriate
services when required. This could lead to ethnic minority individuals coming to the attention of psychiatric services at an
earlier age.
5. Conclusion
The current study has shown that there are substantial ethnic differences in the prevalence of severe mental illness,
diagnosis of autism spectrum disorders and use of community services for adults with intellectual disabilities. Because
people with intellectual disabilities are increasingly likely to require psychiatric attention (e.g. Cooper et al., 2007; Deb et al.,
2001) and to utilise various care facilities, the presence of ethnic differences should be a highly prominent issue in designing

E. Tsakanikos et al. / Research in Developmental Disabilities 31 (2010) 410–415
415
and planning specialist services. It is also crucial to raise awareness of these issues and to ascertain the causes of these
differences. Some possible psycho-social explanations have been offered in the discussion. However, additional research is
needed if we are to understand the relationship between psycho-social and socio-cultural factors, and the association (if any)
with biological factors that impact on prevalence of psychiatric disorders in individuals with intellectual disabilities. Further
studies are required on whether approaches used in mental health services for minority ethnic minority service users
improve access and allocation of community resources to individuals with intellectual disabilities and carers from similar
communities. Finally, this unpicking of risk factors may lead to a further understanding of severe mental illness and
developmental disorders across ethnic communities.
Acknowledgements
The authors wish to thank the service users and their carers for taking part in the study. Special thanks are due to
Geraldine Holt, Jean O’Hara and Colin Hemmings for their helpful comments and suggestions in previous versions of this
manuscript, and also to Charlie H. Maitland for his help with the initial analyses.
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Document Outline

  • The role of ethnicity in clinical psychopathology and care pathways of adults with intellectual disabilities
    • Introduction
    • Method
      • Participants
      • Assessment
      • Analysis
    • Results
      • Socio-demographic data
      • Clinical data
      • Logistic regression
    • Discussion
      • Main findings
      • Schizophrenia spectrum disorders
      • Autistic spectrum disorders
      • Care pathways
      • Age
    • Conclusion
    • Acknowledgements
    • References

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Ethnicity and mental health

 

 

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