SPECIAL GROUPS

Intellectual disability acrossculturesLaura Allison

Andre Strydom

AbstractHere, we provide an overview of the cultural aspects of epidemiological

findings and provision of mental health care to people with intellectual

disability (ID). The prevalence of intellectual disability may vary between

cultural and ethnic groups, but this depends to a large extent on the

definition and assessment methods used. Although human-rights-based

policies have led to de-institutionalization and community care, stigmati-

zation and discrimination of individuals with ID and health inequalities

are common across cultures, which may be associated with the high

rates of mental illness in this population. Negative attitudes of mental-

health professionals towards those with ID or minority groups may lead

to double discrimination and diagnostic overshadowing, and communication

issues and complex caregiver networks further complicates the recognition

and management of mental illness in individuals with ID. There are

several ways in which clinicians could improve practice, including

awareness of culturally associated explanatory models, providing

person-centred care while also building a working relationship with

caregivers, and addressing communication barriers, which may improve

the care of individuals with ID and reduce discrimination and health

inequalities in all cultural groups.

Keywords culture; discrimination; ethnicity; mental retardation; mental

illness; intellectual disability; stigmatization

Definition of intellectual disability

Intellectual disability (ID), also known as learning disabilities in

the UK, is the term used internationally to refer to people with

mental retardation. The latter term is increasingly being aban-

doned because of its negative connotations. Although the defi-

nition and terminology of ID has changed over time, its

distinction from mental illness is quite consistent across

cultures.1

Laura Allison MBBS BSc(Hons) in Islington Learning Disabilities

Partnership, Camden and Islington Foundation NHS Trust, London, UK.

Conflicts of interest: none declared.

Andre Strydom MBChB MSc MRCPsych PhD is a Senior Clinical Academic

Lecturer in Intellectual Disability Psychiatry at University College Lon-

don, UK, and a Consultant Psychiatrist at Camden and Islington

Foundation NHS Trust. His research interests are the epidemiology and

management of mental health issues in adults with intellectual

disabilities, with a particular focus on disorders associated with ageing.

Conflicts of interest: none declared.

PSYCHIATRY 8:9 35

Intellectual disability is currently defined in the ICD-10 and

DSM-IV as a develop mental disorder characterized by global

intellectual impairment (IQ < 70) as well as significant functional

and social impairment. The functional criterion differentiates ID

from intellectual impairment, which is based solely on IQ scores.

The ICD-10 distinguishes four levels of severity: mild ID (IQ of

50e69), moderate ID (IQ of 35e9), severe ID (IQ of 20e34), and

profound ID (IQ < 20).2

Mental health care is increasingly being provided in a global-

ized and multicultural environment. We give an overview of the

cross-cultural epidemiological findings and provision of mental

health care to people with ID.

Estimated prevalence

According to a recent study on an urban population in England,

the prevalence of ID (corresponding to mental retardation) was

estimated to a prevalence rate of 0.83e1.14% per GP practice.3

The prevalence of ID cross-culturally is more difficult to

estimate because different definitions are used e those

including deficits in social and occupational functioning as well

as those which rely solely on a measure of intelligence

quotient. The population prevalence of an IQ < 70 two stan-

dard deviations from the mean, should be approximately 2.5%.

However, it has been shown that by including a requirement

for functional impairments, the prevalence of ID can be

reduced to 1%.4

Although ID rates are likely to vary between groups and over

time due to medical factors such as antenatal and neonatal care,

screening during pregnancy for genetic abnormalities and socio-

economic factors such as poverty and nutrition, comparisons of

ID rates between different cultural groups are subject to much

debate due to other important confounders. These include the

effect of education, especially in studies of children, and the

cultural appropriateness of IQ tests. It is often argued that tests

based on performance rather than verbal ability may be more

appropriate in some groups.

Several studies have shown there to be an increased preva-

lence of ID amongst African-American children,5,6 even after

controlling for socioeconomic and demographic variables such as

sex and maternal age. There may be other confounders at play

including the fact that growing up in a racially segregated and

disadvantaged community may contribute to a decline in child-

ren’s IQ scores in the early school years.7 A study undertaken in

Australia showed that, when specific functional criteria were

taken into account, the prevalence rates of ID in indigenous

children was lower than when broader educational criteria were

used.8 The estimates of those with mild intellectual impairment

are more likely to vary according to these factors, while the

prevalence of severe mental retardation is more stable, at

approximately 3e4 per 1000 in children and in adults both in

developed and developing countries.4

With regards to mental illness in people with intellectual

disabilities, the point prevalence of schizophrenia is reported to

be as high as 3%, compared to between 0.4% and 1% in the

general population, and the point prevalence of depression is

estimated to be as high at 3.7%, compared to 2% in the general

population.9

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SPECIAL GROUPS

De-institutionalization and community integration

De-institutionalization and community integration of individuals

of ID has been the focus of social care policy in western countries

for several decades. Institutionalization has often not been

a feature of healthcare structures in developing countries. In some

Western European countries such as Germany, the Netherlands,

Spain and Greece, service structures are still centred around

institutional models10, and progress in the former Soviet bloc

countries is slow.

In the UK, de-institutionalization has now largely been

completed. Community care is being provided according to

principles set out in the Department of Health’s ‘Valuing People’

White Paper, published in 2001.11 The four key principles

are Rights, Independence, Choice and Inclusion. ‘Valuing People

Now’,12 published in 2008, is a review of the progress made since

the original White Paper and sets out to highlight areas that still

need to be improved upon. A key theme in the paper is that

people with ID have the same human rights as everyone else. A

‘person-centred approach’ is advocated. Individuals should be

given greater choice and control over how they live their lives

and empowered to enact their rights and fulfil their responsibil-

ities. In this more recent publication, the strategy has been

strengthened to ensure that it is inclusive of those groups who

are least often heard and most often excluded. These groups

include people with more complex needs, people from black and

minority ethnic groups and newly arrived communities, people

with autistic spectrum conditions and offenders in custody and in

the community.

Stigmatization and discrimination

One trade-off for increased independence is that people with ID

may find themselves more vulnerable to stigmatization and

exposed to prejudices regarding the disabled. According to

Goffman, stigmatization is when an individual with an attribute

which is deeply discredited by his/her society is rejected as

a result of the attribute.13 These include internal attributes, e.g.

intellectual disability or mental illness, or external attributes such

as the way a person looks or behave. Adults with ID have been

shown to be aware of being stigmatized and this may contribute

to their excess of mental health problems.14

The degree to which individuals with ID are stigmatized may

differ between cultures depending on prevailing beliefs

regarding undesirable attributes. These negative perceptions

often give rise to exclusion and discrimination. There are many

historical examples of discrimination against people with ID,

such as the eugenics movement, which led to the mass sterili-

zation of people with ID in some US states and European

countries in the 1930s. It also drove the Nazi atrocities that

claimed the lives of thousands of people with ID. More recently,

a large survey of the attitudes towards people with ID in

different countries showed that people from some developing

countries often hold negative views on people with ID and are

more in favour of segregation and special care, in contrast to

those from developed countries.15

In the UK, individuals with ID are often subjected to

inequalities in healthcare e for example, not being offered

treatments for acute illnesses that are routine for other members

of the population.16

PSYCHIATRY 8:9 35

Attitudes of mental health professionals towards ID

Negative perceptions in mental health professionals about people

with ID have also been reported.17 This may contribute to health

inequalities or reduced access to care. If the patient is from

a different culture, race or ethnic group from the majority of

health professionals, it can result in ‘double discrimination’. The

attitudes of mental health professionals towards individuals with

ID could also lead to diagnostic overshadowing, which is

described as dismissing changes in behaviour, personality or

ability that would be taken seriously in a person without intel-

lectual disability.18

Cross-cultural issues concerning caregivers and care networks

The care networks of people with ID are an important consid-

eration for clinicians as individuals with ID are often dependent

on care from family or paid carers. Attitudes to care-giving are

culturally dependent. In many cultures, care-giving is a valued

and essential duty, whereas parents in individualistic western

cultures were, until recently, often encouraged to transfer their

care responsibilities to the state, with the result that many ageing

adults with ID in the UK and other European countries have

a history of life-long institutionalization.

Care-giving places a burden on caregivers, especially women

who often have many other duties. Caregiver burn-out is there-

fore an important consideration. The burden may be less if care-

giving is shared within an extended family network.

The beliefs of caregivers about the causes of disability, mental

illness or behaviour are likely to play an important part in

the preference for and adherence to interventions.19 In some

cultures, disability may be seen to have a cause external to the

person e for example, in Southern Africa traditional healers

believed that intellectual disability may be linked to witchcraft.20

It may be argued that an external explanatory model is beneficial,

as the person with ID is perceived to be innocent of their diffi-

culties and might be more likely to be a valued member of the

family. However, such beliefs could also give rise to one or both

parents being ostracized. Where the cause of disability is located

within the person of ID it may be associated with scapegoating or

isolation of the person with ID.

The explanatory beliefs of people with ID and their caregivers

regarding mental illness are equally important. Behavioural

patterns corresponding to medical concepts of psychiatric

disorders could be understood by the person’s culture in several

different ways; as moral choices or antisocial behaviour, for

example.1 Recognizing that individuals with ID can develop

mental health problems is often an issue. The triggers for referral

and subsequent compliance with particular treatments may

therefore vary.

Assessment and treatment of mental illness in individuals with ID

There are several issues to consider here. Firstly, it has been

argued that people from ethnic minorities have been classified as

having ID because of the racist tendencies of the ethnic majority.1

We, as professionals, must therefore be aware of potential

sources of prejudice within the systems in which we work, and

the classifications we employ to identify those with a disability.

We should attempt to look at each person as an individual in the

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SPECIAL GROUPS

context of their social and ethnic background. Clinicians should

put the needs of the person with ID at the centre, while consid-

ering their background and care-giving network.

In order to be able to assess someone with ID properly,

consideration must be given to the best means of communica-

tion. Communication with the person with ID can be improved

by adjusting to their ability level and checking their under-

standing, or by using communication aids such as pictorial

representations. It may also be necessary to make use of inter-

preters. Explanatory models should be explored with the patient

and their caregivers. They should be offered a range of treatment

choices if possible, and adjustments made to the proposed

treatment programme as required.

From a wider perspective, different cultures have different

views and expectations of medical professionals. Some may be

distrustful of formal services and Western medicine, which, in

turn, could affect treatment compliance and engagement with

services. Gaining trust can take time and effort. Health and social

services are classically underused by minority ethnic groups and,

therefore, care should be taken to develop and promote cultur-

ally appropriate options to improve acceptability. A

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Practice points

C Be aware of how the definition used may influence who gets

identified as having an ID

C Person-centred planning and care e tailored to the individual

with ID to help them to identify goals and work towards them

C Gain the trust of caregivers and work with the extended care

network

C Be mindful of cultural issues affecting the patient and/or family

and how these could influence behaviour and presentation

C Be mindful of illness beliefs and consider adjustment to the

treatment programme if required

C Address communication barriers

C Address potential sources of prejudice and discrimination

amongst social and healthcare staff

C Identify and address health inequalities

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