Knowledge, inclusion attitudes, stigma and beliefs regarding intellectual disability and schizophrenia among the UK public: The role of ethnicity, religion and contact

Lay people’s understanding about a health condition and their perceptions of the condition can have far reaching consequences. Where ignorance, and misinformed beliefs about the condition or its causes prevail this may lead to stigma, prejudice and discrimination, and can have negative consequences for help seeking. These processes have been extensively studied in relation to mental illness, particularly schizophrenia and depression. In contrast, in the intellectual disability field empirical investigations have largely concentrated on the study of explicit attitudes. While the primary aim of this thesis was to increase our understanding of lay conceptualisations of intellectual disability and their consequences for stigma associated with intellectual disability, throughout comparisons are drawn with lay responses to schizophrenia to identify generic and disorder specific processes and to relate the findings to a larger body of evidence. A new measure, the Intellectual Disability Literacy Scale (IDLS), was developed. This assesses knowledge, beliefs about causes of, suitable interventions for, and social distance towards an individual presenting with symptoms of intellectual disability. It allows comparison with lay conceptualisations of schizophrenia, using diagnostically unlabelled vignettes. A large scale UK general population survey was conducted using the IDLS and the Community Living Attitude Scale-Intellectual Disability version (Henry, Keys, Balcazar & Jopp, 1996a). Responses by 1002 lay people of working age were examined to assess the relationships between awareness, inclusion attitudes and social distance. Causal and intervention beliefs of 1752 lay people and the association between causal beliefs and social distance were investigated. The sample was ethnically and religiously diverse and close attention was paid throughout to participants’ socio-demographic characteristics, with a particular focus on the role of contact, ethnicity and religion. The findings indicate that awareness of intellectual disability and schizophrenia among the UK public is relatively low. When presented with an unlabelled vignette 28% of lay people recognised intellectual disability. Recognition of schizophrenia was at a similar level, with 24% identifying the condition in an unlabelled vignette and a further 44% making reference to mental illness in general or to another psychiatric diagnosis. Awareness of both conditions was lower among participants from ethnic minorities. Contact with people with intellectual disability/ mental health problems was the strongest predictor of lay people’s ability to recognise the two conditions. There was support for the view that people with intellectual disabilities have similar life goals as people without disabilities and should not be segregated from society, but support for empowerment, i.e. choice and self-advocacy, was weaker. Correlations between inclusion attitudes and social distance were significant but modest. Social distance was lower for intellectual disability than for schizophrenia, but views on social contact with an individual with mild intellectual disability were no more than ambivalent. Lay people were most likely to endorse environmental causes for the intellectual disability vignette and biomedical and adversity causes for the schizophrenia one. Recognition of the condition was associated with reduced social distance, increased endorsement of biomedical causes and reduced endorsement of supernatural causes for both intellectual disability and schizophrenia. Belief in supernatural causes, which were associated with increased social distance, was low overall but more common among specific sections of the public, including people with low educational attainments, those who viewed religion as important in their lives, and Muslims. Expert help was much less likely to be recommended for intellectual disability than for schizophrenia. Beliefs about suitable sources of help showed fairly close correspondence with participants’ causal beliefs. Lay people who recognised the symptoms were more likely to favour expert help, and less likely to endorse lifestyle or religious/ spiritual help. Familiarity with someone with intellectual disability or mental illness did not influence causal beliefs, but was associated with endorsement of expert help. Overall the findings suggest that many of the relationships between awareness, causal beliefs, social distance, contact and socio-demographic factors are common to intellectual disability and schizophrenia, but vary in strength, while some are disorder specific. The findings indicate that people with intellectual disability or mental illness from ethnic minority backgrounds not only face racial discrimination and poorer access to appropriate assessment and treatment, but the additional challenge of increased stigma and lack of understanding among their own cultural communities. Raising awareness and tackling stigmatising attitudes and beliefs at general population level should go hand in hand. Public education and anti-stigma interventions that target certain sections of society in particular seem indicated.