BackgroundPeople with intellectual disability have a higher prevalence of physical health problems but often experience disparities in accessing health care. In England, a number of legislative changes, policies and recommendations have been introduced to improve health care access for this population. The aim of this qualitative study was to examine the extent to which patients with intellectual disability and their carers experience discrimination or other barriers in accessing health services, and whether health care experiences have improved over the last decade years.Method and Main FindingsTwenty nine participants (14 patient and carer dyads, and one carer) took part in semi-structured interviews. The interviews were audio-taped and transcribed and analysed using thematic analysis. Eight themes were identified. Half the participants thought that the patient had been treated unfairly or had been discriminated against by health services. There were accounts of negative staff attitudes and behaviour, and failure of services to make reasonable adjustments. Other barriers included problems with communication, and accessing services because of lack of knowledge of local services and service eligibility issues; lack of support and involvement of carers; and language problems in participants from minority ethnic groups. Most participants were able to report at least one example of good practice in health care provision. Suggestions for improving services are presented.ConclusionDespite some improvements to services as a result of health policies and recommendations, more progress is required to ensure that health services make reasonable adjustments to reduce both direct and indirect discrimination of people with intellectual disability.
Studies have investigated the experiences of courtesy stigma and affiliate stigma in family members of individuals with intellectual and developmental disabilities (IDD) without a clear distinction between the two. This systematic literature review aimed to evaluate the findings of studies that examined the experiences of stigma in families of individuals with intellectual disabilities and/or autism. A systematic search of PsycINFO, ERIC and Scopus identified relevant articles published between 2012 and 2016, to expand on an earlier review on this topic published in 2012. Ten articles pertaining to eight studies were identified. They revealed that family carers do experience stigma and various consequences related to these, with family culture influencing these experiences. This review identifies a number of psychosocial variables that are associated with the development of courtesy stigma, affiliate stigma and their consequences. It highlights protective factors and strategies family carers use to cope with stigma, and a lack of clarity in distinguishing the concepts of courtesy stigma and affiliate stigma in family members.
Adults with borderline intelligence are more likely to suffer from treatable mental disorders and an excess of substance misuse. Services should be aware of hidden morbidity in this group.
Stigma is a 'mark' that distinguishes a person as being deviant, flawed, 'spoiled' or generally undesirable.1 A second approach defines stigma as a form of negative social stereotyping or categorisation, where societal attitudes based on social norms and values give rise to stigma.
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