The symptoms of 36 people with varying degrees of intellectual disability (ID) who had had an ICD-10 depressive syndrome in the preceding year were compared with 46 non-depressed people with comparable degrees of ID. Throughout the spectrum of ID, symptoms of depressed affect and sleep disturbance were significantly different between the groups. While symptoms in people with mild ID were reflected in the standard diagnostic criteria, this was not the case in people with moderate and severe ID. With increasing disability there was a move towards 'behavioural depressive equivalents' such as aggression, screaming and self-injurious behaviour. Diagnostic criteria for depression among people with severe ID, should place more emphasis on behavioural 'depressive equivalents'.
People with intellectual disability were identified through the local register and through liaison with general practitioners (GPs). A consultation exercise was conducted with users and carers to ascertain their experiences and perspectives of primary health care (GP services). A comprehensive health check was devised and administered to about 120 people to detect physical disorders, especially cardiovascular risk factors. A standardized checklist was used to determine the population of people with psychological and psychiatric problems. Case notes were reviewed after nearly one year to determine physical and psychological health gain. Significant gains were noted with regard to physical disorders. In contrast, mental health problems were underreported and participants had achieved few gains on follow-up. The reasons and implications for future service planning are discussed.
Mental health problems affect people with intellectual disabilities (ID) at rates similar to or in excess of the non-ID population. People with severe ID are likely to have persistent mental health problems. In this systematic review (PROSPERO 2015:CRD42015024469), we identify and evaluate the methodological quality of available measures of mental health problems or well-being in individuals with severe or profound ID. Electronic searches of ten databases identified relevant publications. Two reviewers independently reviewed titles and abstracts of retrieved records (n=41,232) and full-text articles (n=573). Data were extracted and the quality of included papers was appraised. Thirty-two papers reporting on 12 measures were included. Nine measures addressed a broad spectrum of mental health problems, and were largely observational. One physiological measure of well-being was included. The Aberrant Behavior Checklist, Diagnostic Assessment for the Severely Handicapped Scale-II and Mood, Interest and Pleasure Questionnaire are reliable measures in this population. However, the psychometric properties of six other measures were only considered within a single study - indicating a lack of research replication. Few mental health measures are available for people with severe or profound ID, particularly lacking are tools measuring well-being. Assessment methods that do not rely on proxy reports should be explored further.
Background
The approach taken to support individuals during the coronavirus disease 2019 (COVID-19) pandemic needs to take into account the requirements of people with intellectual disabilities and/or autism, who represent a major vulnerable group, with higher rates of co-occurring health conditions and a greater risk of dying prematurely. To date, little evidence on COVID-related concerns have been produced and no report has provided structured feedback from the point of view of people with intellectual disabilities and/or autism or of their family/carers.
Aims
To provide systemised evidence-based information of the priority concerns for people with intellectual disabilities and/or autism regarding the COVID-19 pandemic.
Method
Senior representatives of major UK-based professional and service-user representative organisations with a stake in the care of people with intellectual disabilities and/or autism were contacted to provide a list of concerns across three domains: ‘mental health and challenging behaviour’, ‘physical health and epilepsy’ and ‘social circumstances and support’. The feedback was developed into statements on frequently reported priorities. These statements were then rated independently by expert clinicians. A video-conference meeting to reconcile outliers and to generate a consensus statement list was held.
Results
Thirty-two organisations were contacted, of which 26 (81%) replied. From the respondent's data, 30 draft consensus statements were generated. Following expert clinician review, there was initially strong consensus for seven statements (23%), increasing to 27 statements (90%) following video conferencing.
Conclusions
These recommendations highlight the expectations of people with intellectual disabilities and/or autism in the current pandemic. This could support policymakers and professionals’ deliver and evidence person-centred care.
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