Risk markers associated with challenging behaviours in people with intellectual disabilities: a meta-analytic study

A meta‐analysis of prevalence and cohort studies conducted over the last 30 years was carried out to identify risk markers for challenging behaviour shown by individuals with intellectual disabilities (IDs). A total of 86 potential studies was identified from the review, with 22 (25.6%) containing sufficient data to enable a statistical analysis to be conducted. Results indicated that males were significantly more likely to show aggression than females, and that individuals with a severe/profound degree of ID were significantly more likely to show self‐injury and stereotypy than individuals with a mild/moderate degree of ID. Individuals with a diagnosis of autism were significantly more likely to show self‐injury, aggression and disruption to the environment whilst individuals with deficits in receptive and expressive communication were significantly more likely to show self‐injury. In most cases, tests for heterogeneity were statistically significant, as expected. The meta‐analysis highlighted the paucity of methodologically robust studies of risk markers for challenging behaviours and the lack of data on incidence, prevalence and chronicity of challenging behaviour in this population.     

Challenging behaviours should not be considered as depressive equivalents in individuals with intellectual disability

Background Depression is one of the most common forms of psychopathology in people with intellectual disability (ID). The present study evaluated the utility of an expanded assessment of psychiatric symptoms and challenging behaviours, as measured by the Clinical Behavior Checklist for Persons with Intellectual Disabilities (CBCPID). Methods The CBCPID was administered to 92 people with ID, 35 of whom were diagnosed with a depressive disorder. Results Item and factor analysis of the scale indicated that depression was best assessed using the core DSM‐IV symptoms of depressive disorder. Challenging behaviours such as self‐injury or aggression were not closely associated with depression. Short scales using the core DSM‐IV symptoms of depression were highly internally consistent. There was also evidence of the validity of these scales. Conclusions This study found no evidence that challenging behaviours were depressive equivalents in this population. The present authors conclude that the assessment of depression in people with ID should focus on the core DSM‐IV symptoms of depression.     

Mental disorder in adults with intellectual disability. 2: The rate of behaviour disorders among a community-based population aged between 16 and 64 years

Despite the difficulty of defining behaviour disorder, most previous studies have reported a high rate of behaviour disorders in people with intellectual disability (ID). The aim of the present study was to establish the overall rate and types of behaviour disorders in a population‐based sample of adults with ID. The other aim was to explore the possible risk factors that are associated with the overall rate as well as different types of behaviour disorders. One hundred and one adults with ID aged between 16 and 64 years were randomly selected from a sample of 246 such adults, i.e. those who were known to the Vale of Glamorgan Social Services Department in South Wales, UK. Thirteen behaviour disorders were rated according to the Disability Assessment Schedule. Background data on subjects were also collected, and were subsequently analysed to assess the relationship between different risk factors and behaviour disorders. Sixty‐one subjects (60.4%) had at least one behaviour disorder of any severity or frequency. Twenty‐three per cent of subjects showed aggression, 24% self‐injurious behaviour, 36% temper tantrum, 26% overactivity, 29% screaming, 38% attention‐seeking behaviour, 20% objectionable habits, 18% night‐time disturbance and 12% of subjects showed destructiveness. Statistically significant associations were seen between the rate of overall behaviour disorder and the use of psychotropic medication, and between family and group home residence. The rate of aggression was significantly associated with the use of psychotropic medication. The rate of self‐injurious behaviour was significantly associated with the severity of ID, female gender and poor communication abilities. The rate of temper tantrum was significantly associated with the use of psychotropic medication. Twenty‐four subjects showed severe or frequent aggression, destructiveness, self‐injury or temper tantrum, and 11 individuals showed real challenging behaviours. Severe behaviour problems were significantly associated with female gender, severity of ID, the presence of a history of epilepsy and attendance at day activities.     

Challenging behaviour in community services

The implementation of community care in the UK has led to the requirement that services should be able to meet the needs of adults with intellectual disability (ID) and additional needs in terms of challenging behaviour. However, the extent to which people with challenging behaviour are present in the community and the extent to which community services can support them effectively still requires significant research. The present study examines the prevalence of challenging behaviour amongst adults with ID residing in three London boroughs and the issues which arise from service delivery to this client group. All service providers and general practitioners in the area were contacted and asked to identify any individuals with ID and challenging behaviour. All responses were screened, and then key staff were interviewed for information on a range of demographic factors and on the Checklist of Challenging Behaviour. The reliability of the instrument was also assessed. Four hundred and forty‐eight individuals were identified from a total borough population of 670 000. There was consistency in the types of behaviour which were frequently identified across the three boroughs. There were significant levels of self‐injury as well as a range of behaviours of the ‘hard to engage’ type. Most individuals had more then one challenging behaviour and some individuals with seriously aggressive behaviour used local community services. Twenty‐five per cent of the sample lived at home with their families and 50% were in community residential services. The boroughs differed in their ability to manage those with challenging behaviour in that one borough had many more people placed out‐of‐borough. Significant numbers of individuals with challenging behaviour were living in the community. The range and number of behaviours suggest that staff need to be very skilled in supporting such individuals, and that effective planning and support are essential if people with challenging behaviour are to be maintained in community settings.     

Manifestations of depression in people with intellectual disability

The symptoms of 36 people with varying degrees of intellectual disability (ID) who had had an ICD-I0 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’.     

Behavioural and emotional problems in children with intellectual disability attending special schools in Cape Town, South Africa

A sample of 355 children with intellectual disability (ID) attending special schools in Cape Town, South Africa, were assessed on the Developmental Behavioural Checklist – Teacher Version (DBC‐T). A prevalence rate of 31% for psychopathology was found. Boys manifested more behaviour problems than girls, especially in relation to disruptive, self‐absorbed and antisocial behaviours. Children with severe and profound levels of ID showed more behavioural difficulties than those in the mild and moderate categories. Specific behaviour problems were self‐absorbed and autistic behaviours in children with profound ID, communication problems and anxiety in those with severe ID and antisocial behaviour in children with mild ID. Epilepsy, but not cerebral palsy was associated with higher total behaviour scores. Ambulant children were more disruptive and antisocial, while non‐ambulant children were more anxious. Non‐verbal children had higher scores on all of the subscales except for disruptive behaviour.     

The impact of alleged abuse on behaviour in adults with severe intellectual disabilities

Background People with intellectual disabilities (ID) are particularly vulnerable to abuse, and most incidents come to light through victim disclosure. Those people with severe or profound ID are not able to describe what has happened to them. This project aimed to describe the consequences of abuse and changes in behaviour following alleged abuse in 18 adults with severe ID. Method Family members or other carers were interviewed to collect information about the alleged abuse. They were also asked about the person's adaptive and challenging behaviours at three time points: in the 3 months immediately prior to the abuse (time 1), in the 3 months immediately after the abuse (time 2) and in the 3 months prior to interview (time 3). Results A typical pattern emerged for both adaptive and challenging behaviours: there were few problems or difficulties at time 1, major difficulties at time 2 and some recovery by time 3. Conclusions Evidence is mounting that clinicians considering the sequelae of abuse for people with severe or profound ID need to consider changes in adaptive and challenging behaviours, as well as the typical symptoms of post‐traumatic stress disorder.     

The association between severity of intellectual disability and psychiatric symptomatology

Background Mental illness is more prevalent in people with intellectual disabilities (ID) than in the normal population. The association between mental illness and severity of ID is also of importance in the understanding and treatment of maladaptive and challenging behaviours. The aim of this study was to investigate the association between severity of ID and prevalence of mental illness. Methods Using The Mini PAS‐ADD, an instrument designed to identify psychiatric symptoms in people with ID, informants were interviewed about the presence of symptoms in 96 participants with moderate, severe and profound ID, and asked about the use of psychotropic medication. Results Mental illness, particularly anxiety, depression and psychosis, was far more prevalent in participants with moderate ID than in people with severe and profound ID. The use of psychotropic medication was not significantly different between the groups. Conclusions The prevalence of psychiatric illness decreases with severity of ID. The usefulness of psychiatric illness models, in explaining maladaptive and challenging behaviours, also decreases with severity of ID. Drug treatment may become more complicated, and behavioural and environmental interventions may become relatively more important, as severity of ID increases.     

Determinants of negative emotional reactions and causal beliefs about self-injurious behaviour: an experimental study

Background Caregivers’ emotional and cognitive reactions to challenging behaviours have been identified as potential determinants of their reinforcing responses towards such behaviours. However, few studies have explored factors affecting caregivers’ emotional and cognitive responses to challenging behaviours. Methods Sixty students inexperienced in work with people with challenging behaviours and 60 experienced staff watched one of two carefully matched, acted videotapes depicting self‐injury maintained by attention or escape‐from‐task demands. The participants were also told whether the self‐injury depicted typically led to mild or severe consequences for the person filmed. The subjects completed measures of their negative emotional reactions to the self‐injury and their behavioural causal beliefs about the behaviour depicted. Results Analyses of variance revealed that students reported more negative emotional reactions and were less likely to endorse behavioural causal hypotheses. Those who watched the severe self‐injury videotape also reported more negative emotional reactions. Two effects of the behavioural function of the depicted self‐injury were also found: (1) attention‐maintained self‐injury was associated with higher levels of endorsement of behavioural causal hypotheses; and (2) severe attention‐maintained self‐injury led to the strongest negative emotional reactions, but only from students. Conclusions The effects of experience and behavioural function on emotional reactions and behavioural causal beliefs need to be explored in more detail in future research. If replicated, the present results have significant implications for theory and practice in the remediation of challenging behaviours and the support of care staff.     

Profiles and correlates of aggressive behaviour among adults with intellectual disabilities

Background Despite the heterogeneity in aggressive behaviours observed among individuals with intellectual disabilities (ID), little attention has been paid to the identification of typologies of aggression among individuals with mild or moderate ID and their associated factors. Objective The goal of the present study was to identify profiles of aggressive behaviour and their psychosocial correlates. Method In this cross‐sectional study of 296 adults with mild or moderate ID, information was gathered through interviews with the ID participants, their case manager and a significant other. Client files were also reviewed. Results Multiple correspondence analysis followed by hierarchical cluster analysis generated six distinct profiles of aggressive behaviour in this sample. The ‘violent’ group clearly stood out as lacking social and vocational involvement, having more severe mental health problems, high levels of impulsivity and antisocial tendencies compared with all other groups. Discussion The identification of distinct profiles of aggressive behaviour offers new possibilities for studying risk factors and eventually targeting specific risk prevention strategies.     

Persistence of challenging behaviours in adults with intellectual disability over a period of 11 years

Background Challenging behaviours in people with an intellectual disability (ID) often develop early and tend to persist throughout life. This study presents data on the chronicity of challenging behaviours in adults with ID over a period of 11 years, and explores the characteristics of people with persistent serious behaviour problems. Method Support staff provided data on 58 adults living in a long‐term residential facility using an interview survey schedule assessing challenging behaviours in 1992 and 2003. Results Participants presenting with serious physical attacks, self‐injury and frequent stereotypy were the most likely to persist in these behaviours over time. These behaviours were characterised by high persistence percentages and associations over time. However, the earlier presence of serious challenging behaviours did not significantly affect the likelihood of serious challenging behaviours in 2003. Individuals with persisting behaviour problems differed from those who did not present serious behaviour problems on the basis of their younger age, increased mobility, and decreased sociability and daily living skills in 1992. Conclusions Estimates of persistence for challenging behaviours are affected by the statistics chosen to represent stability. The apparent persistence of serious challenging behaviours highlights the need to identify the factors related to maintenance of these behaviours over time. The participant characteristics and adaptive behaviours identified in the present study were not consistently related to the persistence of challenging behaviours. Therefore, other factors, including environmental characteristics, are likely to be related to challenging behaviour persistence.     

Patients with and without intellectual disability seeking outpatient psychiatric services: diagnoses and prescribing pattern

Background The present study examined the presenting problem of psychiatric outpatients, and resulting diagnostic and prescribing patterns, comparing patients with intellectual disability (ID) with non‐ID (N‐ID) patients seen in the same clinic. Methods This study was a retrospective medical chart review of information in the first psychiatric diagnostic evaluation for the most recent 100 adult patients with mild ID, 100 patients with moderate, severe or profound ID, and 100 matching N‐ID patients. Results There were significant differences in rates of medical illness, disabilities, history of marriage, children, independent living, and family history of psychiatric and neurological disorders. Individuals with ID were more likely to present with aggression, self‐injurious behaviour or physical complaints, whereas N‐ID subjects presented more frequently with depression and anxiety complaints. For all groups, depressive disorders were the most frequent class of diagnoses. For those with ID, antipsychotics were used in 32% of subjects, with mood stabilizers in 28% and antidepressants in 27%. The N‐ID subjects were most frequently prescribed antidepressants (40%) and anxiolytics (22%). Polypharmacy did not differ significantly among groups. Conclusions Psychiatric practitioners relied on the diagnostic examination to formulate their diagnosis, whereas the chief complaint reflected the view of caregivers of the subjects with ID. In contrast to previous studies, outpatient providers frequently diagnosed depression, and the prescribing pattern showed increased usage of antidepressants and mood stabilizers.     

The form and function of challenging behaviours

Aspects of the topography and behavioural function underlying the challenging behaviours of all people with learning disabilities and challenging behaviour (n =70) in a defined geographical area were investigated. Results indicated that: (1) more severe challenging behaviours were shown by people with more severe disabilities; (2) a significant minority (44%) of people showed more than one form of challenging behaviour, this rising to 79% among people with more severe challenging behaviours; and (3) cross-sectional analyses revealed specific clusters of problematic, aggressive and self-injurious behaviours. Analysis of information derived from the Motivation Assessment Scale (MAS) indicated that (5) the most common funaions of challenging behaviours appeared to be ‘self-stimulation’(for self-injury, destructiveness and ‘other’ challenging behaviours) and securing the attention of carers (for aggressive behaviours). However, (6) parametric analyses failed to identify any consistent relationships between the form and function of an individual's challenging behaviour for aggressive, destructiveness and ‘other’ challenging behaviours, but (7) clients with self-injurious behaviour were significantly more likely to score highly on the ‘self-stimulation’ sub-scale than other sub-scales of the MAS. Finally, (8) significant consistency of behavioural functions across different forms of challenging behaviours shown by the same individual were found for the two combinations of aggressive-destructive behaviours and self-injury-'other’ behaviours.     

Diagnosis of depression in people with severe/profound intellectual disability

The Marston 30 Symptoms Checklist for detecting depression was used to determine whether or not the notion of ‘depressive equivalents’ can provide a few of the core characteristics necessary for the diagnosis of depressive disorders in people with severe/profound intellectual disability (ID). Diagnoses of major depression were made by a psychiatrist using the DSM‐III‐R criteria, combined with information from records, staff, team, parents, behaviour profiles, direct observations, mental status and follow‐up visits. Twenty‐two people with ID fulfilled the selection criteria from a larger sample of 150 patients who had been evaluated in 350 contact visits. Scores on the checklist for major depression for 15 subjects with severe/profound ID were similar to the core characteristics for diagnosis of major depression by DSM‐III‐R criteria. Evidence was found for the presence of depressive equivalents in the subjects, but these appeared to be secondary. The 15 participants with severe/profound ID were observed mostly during the depressive phase of bipolar I and bipolar II disorder, and major depression, recurrent type. Melancholic features were prominent in their presentation. Further studies of people with ID are needed to determine whether depressive equivalents are more prominent in cases of major depression with atypical features than in cases of major depression with melancholic features.     

Syndrome specificity and behavioural disorders in young adults with intellectual disability: cultural differences in family impact

Background This study examined whether behaviour problems and adaptive behaviour of low functioning young adults, and well‐being of their families, varied by diagnostic syndrome [intellectual disability (ID) only, cerebral palsy, Down syndrome, autism], as well as by cultural group. Methods Behaviour disorders in young adults with moderate to severe ID were assessed from information provided by 282 caregivers during in‐home interviews. The sample consisted of 150 Anglo participants, and 132 Latino, primarily Spanish‐speaking, participants drawn from Southern California. Results Behaviour disorders and maternal well‐being showed the same pattern across disability syndromes. Autism was associated with the highest scores in multiple behaviour problem areas as well as maternal reports of lower well‐being. Down syndrome was associated with the lowest behaviour problem scores and the highest maternal well‐being. When behaviour problems were controlled for, diagnostic groups accounted for no additional variance in maternal stress or depression. The pattern of behaviour problems and well‐being did not differ by sample (Anglo vs. Latino), although level on well‐being measures did. Latina mothers reported significantly higher depression symptoms and lower morale, but also higher positive impact from their child than did Anglo mothers. Conclusions Caregivers of young adults with autism report more maladaptive behaviour problems and lower personal well‐being, or stress, relative to other diagnostic groups, regardless of cultural group. However, cultural differences exist in caregiver reports of depression, morale, and positive perceptions. Implications for service provision aimed at families of children with challenging behaviour problems are discussed in the context of culture.     

Population prevalence of psychopathology in children and adolescents with intellectual disability: II epidemiological findings

This paper reports findings from an epidemiologically derived population in a multicentre study in NSW, Australia. The design of this study is described in the accompanying paper. Those with mild intellectual disability (ID) were likely to have been underascertained, but identification and participation rates for those with more severe ID were high. The study found that in the regions surveyed 40.7% of those with ID and aged between 4 and 18 could be classified as having severe emotional and behaviour disorder or as being psychiatrically disordered. The profoundly intellectually handicapped had lower levels of disturbance overall compared with those with mild, moderate and severe ID. The level of ID affected scores on a number of behavioural dimensions, with disruptive and antisocial behaviours more prominent in the mild ID group, and ‘self–absorbed’ and ‘autistic’ behaviours more prominent in those with severe ID. Age and sex did not affect prevalence, a finding that is in contrast to that found in general child psychopathology. The study found that fewer than 10% of children with intellectual disability and major psychiatric disorder had received specialist assistance.     

Prevalence and types of aggressive behaviour among adults with intellectual disabilities

Background Aggressive behaviours represent major obstacles to the integration into society of individuals with intellectual disability (ID) and pose significant management issues for carers. Methods The present study assessed the prevalence and severity of five types of aggressive behaviours in 3165 adult men and women with ID receiving services from three rehabilitation agencies in Québec by surveying their carers using the Modified Overt Aggressive Scale. Results The 12‐month prevalence of aggressive behaviour was 51.8%: 24% property damage, 37.6% verbal, 24.4% self‐oriented and 24.4% physical aggression, and 9.8% sexually aggressive behaviour, most of which being mild in severity. Only 4.9% of individuals displayed aggressive behaviour leading to injury of the victim. Few gender differences were observed. Conclusions The capacity to document and assess the types as well as the severity of aggressive behaviour is thus critical, not only to better understand the correlates of various types of behaviours but also to orient intervention programmes whether they be prevention, assessment, monitoring or management of aggressive behaviour.     

Use of the Interact Short Form as a tool to evaluate emotion of people with profound intellectual disabilities

Background One of the essential purposes of intervention programmes for people with profound intellectual disabilities (ID) is to enhance the desirable mood and behaviour and decrease the undesirable ones through stabilizing their emotion. There is lack of validated instrument to offer a comprehensive measure that covers the mood and behaviour, both desirable and undesirable, appropriate for people with profound ID. Method This study aimed to examine the validity and reliability of the Interact Short Form for evaluating the mood and behaviour of people with profound ID, and at the same time, review their emotional profile using the Interact Short Form. Both content validity using expert panel review and construct validity by means of factor analysis were investigated. A total of 75 people with profound ID were recruited. Inter‐rater reliability was tested. The results of the Interact Short Form were described to reflect the emotional profile of this group of participants. Results Using the results of expert panel review and those from factor analysis, we found three subscales representing the mood and behaviour of people with profound ID. They were: ‘emotional expression’, ‘interests towards tasks’ and ‘behaviours to environment’. All three subscales were found to be internally consistent (α = 0.71–0.88). The Interact Short Form– People with profound ID version also showed good inter‐rater reliability (mean = 0.72). The results of the Interact Short Form showed that this group of participants had fairly stable emotion under the structured setting and activities in the residential institutions where data were collected. Conclusions The Interact Short Form– People with profound ID version serves as a helpful tool for both clinical and research use in assessing the mood and behaviour of people with profound ID in a simple, comprehensive and systematic way.     

Causal explanations, concern and optimism regarding self-injurious behaviour displayed by individuals with Cornelia de Lange syndrome: the parents' perspective

Research into behaviours associated with specific syndromes, such as Cornelia de Lange syndrome (CdLS), has neglected to explore the parents' perspective, particularly the potential impact of the notion of behavioural phenotypes on parents' causal explanations. Given the research focus on self‐injurious behaviour (SIB) in CdLS, the present study examined parental concern across four topographies of challenging behaviour, causal explanations for these behaviours and optimism for change. As part of a larger study, a questionnaire survey of 86 parents of children and adults with CdLS was conducted. Quantitative data on parental concern and optimism with regard to behaviour problems were collected. Causal explanations for behaviour problems were examined by subjecting open‐ended responses to a content analysis. Parents were as concerned about physical aggression and disruptive behaviours as they were about SIB. The majority of parents had deconstructed how CdLS might be associated with SIB in terms of other factors associated with CdLS, such as degree of intellectual disability. Parents did not believe that CdLS influenced SIB more than other challenging behaviours and their beliefs did not effect optimism regarding future change in the behaviour. Despite the focus of research on SIB in CdLS, parents of children and adults with CdLS are also concerned about other challenging behaviours. There was no evidence that a deterministic perspective had been adopted by parents and causal explanations were unrelated to optimism for future change.     

Relationship between late‐life depression and life stressors: Large‐scale cross‐sectional study of a representative sample of the Japanese general population

Aim: The purpose of the present study was to clarify the relationship between late‐life depression and daily life stress in a representative sample of 10 969 Japanese subjects. Methods: Data on 10 969 adults aged ≥50 who participated in the Active Survey of Health and Welfare in 2000, were analyzed. The self‐administered questionnaire included items on 21 reasons for life stressors and the magnitude of stress, as well as the Japanese version of the Center for Epidemiologic Studies Depression Scale (CES‐D). The relationship between the incidence of life stressors and mild–moderate (D₁₆) and severe (D₂₆) depressive symptoms was examined using logistic regression analysis. Results: A total of 21.9% of subjects had D₁₆ symptoms, and 9.3% had D₂₆ symptoms. Further, increased age and being female were associated with more severe depressive state. Logistic regression analysis indicated that the strongest relationship between both the incidence of D₁₆ and D₂₆ symptoms and life stressors stemmed from ‘having no one to talk to’ (odds ratio = 3.3 and 5.0, respectively). Late‐life depression was also associated with ‘loss of purpose in life’, ‘separation/divorce’, ‘having nothing to do’, ‘health/illness/care of self’, and ‘debt’. Conclusion: There is a relationship between late‐life depression and diminished social relationships, experiences involving loss of purpose in life or human relationships, and health problems in the Japanese general population.