BACKGROUND: Building \'key skills\' may help prevent the development of challenging behaviour in children with an intellectual disability. The aim of this paper was to extend the current limited evidence in this area.
METHODS: We undertook two studies with children with an intellectual disability in school settings: (1) a cross-sectional replication study exploring the relationship between \'key skills\' and challenging behaviour. (2) a longitudinal study follow-up exploring change in \'key skill\' levels and challenging behaviour.
RESULTS: The replication study recruited 74 participants, those scoring lowest in \'key skill\' had a 94% chance of having challenging behaviour; those with the highest scores had a 6% chance. The follow-up study recruited 39 participants, we found a significant increase in children\'s \'key skill\' level (p < .001) and a decrease in their challenging behaviour (p = .046).
CONCLUSIONS: Building \'key skills\' in children with an intellectual disability may help reduce or prevent challenging behaviour.

Background: This study focuses on what feeling safe means for people with mild intellectual disabilities and severe challenging behaviour, and which factors affect their sense of safety. Method: Thematic analysis was used to analyse data collected during (1) ethnographic longitudinal research and (2) interviews and focus groups among professionals and service users. Results: Feelings of safety can relate to three main themes: (1) a physical environment that reduces risks and temptations; (2) a reliable, predictable, and supportive environment; and (3) an accepting environment that enables service users to establish a normal life. An analysis of which factors affect service users\' sense of safety identified 20 themes (e.g. team climate) and 34 subthemes (e.g. interactions with other service users). Conclusions: A range of interconnected factors can affect service users\' feelings of safety. Future research should explore what organisations and external actors (e.g. the police) can do to promote those feelings.

BACKGROUND: This study assessed the effectiveness of a cross-departmental case review panel-the Multicap Complex Behaviour Forum (CBF)-in reducing challenging behaviour exhibited by people with intellectual disabilities.
METHODS: Thirty participants (15 CBF participants and 15 matched-control participants) took part in the study. Behavioural data was collected for each CBF participant (and their matched control) for the three-month period before entering the CBF, during their time in the CBF, and the 3 months after exiting the CBF.
RESULTS: There was a significant interaction of group and time observed, with the CBF participants showing more change in behavioural incidents across time. Associated with this change was a noticeable reduction in staff injury costs related to the challenging behaviour of the CBF participants.
CONCLUSIONS: This study demonstrates that positive behavioural and organisational outcomes are enhanced by fostering collaboration across multiple organisational systems when it comes to supporting people who exhibit challenging behaviours.

BACKGROUND: Introducing new working methods is common in healthcare organisations. However, implementation of a new method is often suboptimal. This reduces the effectiveness of the innovation and has several other negative effects, for example on staff turnover. The aim of the current study was to implement the ABC method in residential departments for brain injured patients and to assess the quality of the implementation process. The ABC method is a simplified form of behavioural modification based on the concept that behaviour operates on the environment and is maintained by its consequences.
METHODS: Four residential departments for brain injured patients introduced the ABC method sequentially as healthcare innovation using a stepped-wedge design. A systematic process evaluation of the implementation was carried out using the framework of Saunders et al. Descriptive statistics were used to analyse the quantitative data; open questions were clustered.
RESULTS: The training of the ABC method was well executed and the nursing staff was enthusiastic and sufficiently involved. Important aspects for successful implementation had been addressed (like a detailed implementation plan and implementation meetings). However, facilitators and barriers that were noted were not addressed in a timely manner. This negatively influenced the extent to which the ABC method could be properly learned, implemented, and applied in the short and long term.
CONCLUSIONS: The most challenging part of the introduction of this new trained and introduced method in health care was clearly the implementation. To have a successful implementation serious attention is needed to tailor-made evidence-based implementation strategies based on facilitators and barriers that are identified during the implementation process. Bottlenecks in working with the ABC method have to be addressed as soon as possible. This likely requires \'champions\' who are trained for the job, next to an organisation\'s management that facilitates the multidisciplinary teams and provides clarity about policy and agreements regarding the training and implementation of the new method. The current process evaluation and the recommendations may serve as an example for the implementation of new methods in other healthcare organisations.

BACKGROUND: SYNGAP1- related intellectual disability (SYNGAP1-ID) is a rare genetic disorder presenting with intellectual disability (ID), epilepsy, maladaptive behaviours and communication challenges. To date, few studies have assessed the context in which these maladaptive behaviours occur. This study aims to investigate the prevalence of problem behaviours, characterise the behavioural phenotype and use well-validated measures to explore variables that maintain the behaviours.
METHODS: Our sample includes 19 individuals diagnosed with SYNGAP1-ID and their parents. Parents provided information on behaviours that their children engage in, as well as their general behavioural dispositions. Well-validated measures (e.g., the Repetitive Behaviour Scale-Revised, Sensory Profile-2 and Vineland Adaptive Behaviour Scale) were used. A subset of individuals underwent further direct experimental assessment of their problem behaviour to identify the variables maintaining those problem behaviours. Parental reports were analysed using nonparametric statistical analysis; the direct assessments of individuals\' problem behaviour were analysed using visual analysis and validated supplemental measures.
RESULTS: All 19 individuals engaged in some form of maladaptive problem behaviour. Ratings of ritualistic, sameness and restricted behaviours measured by the RBS-R were commensurate with individuals diagnosed with idiopathic autism spectrum disorder (ASD) while self-injurious behaviours were endorsed at a higher level in SYNGAP1-ID when compared with idiopathic ASD. The problem behaviours in our cohort of patients with SYNGAP1-ID were maintained by automatic reinforcement and social attention and are positively correlated with atypical sensory responses.
CONCLUSIONS: Individuals with SYNGAP1-ID engage in problem behaviours commensurate with other populations (e.g., those with ASD), they exhibit atypical response to sensory stimuli. Problem behaviours were frequently maintained by automatic reinforcement, which may result from a dysregulated sensory system. Children with SYNGAP1-ID may benefit from strategies used in persons with ASD.

BACKGROUND: People with intellectual/developmental disabilities (IDD) are known to have high rates of prescription drug use, particularly for psychotropic medications. This is of concern due to the many side effects associated with these medications and because of the risks of polypharmacy. In this paper we compare the most commonly dispensed drugs and all psychotropic medications for youth with IDD compared with youth without IDD.
METHODS: Using population-level administrative health data over a 10-year period, this study examined medications dispensed to youth with an IDD aged 15-24 years compared with youth without an IDD. The most common medications dispensed and the number of youth they were dispensed to were determined. As well a wide variety of psychotropic medications were examined.
RESULTS: There were a total of 20 591 youth with IDD and 1 293 791 youth without IDD identified. Youth with IDD had higher odds of being dispensed pain medications, amoxicillin, salbutamol, levothyroxine and all the psychotropic medications (antidepressants, antipsychotics, anxiolytics, anti-adrenergic agents, mood stabilisers and stimulants). For youth with IDD, 6558 (31.85%) were dispensed two or more different psychotropic medications within a year, compared with 75 963 (5.87%) of youth without IDD.
CONCLUSIONS: Compared to youth without IDD, youth with IDD had significantly higher odds of being dispensed most of the prescription medications studied, including all of the psychotropic medications. They were also twice as likely to be dispensed two or more medications from different classes of psychotropic drugs within the same year. These findings have important implications for the health of people with IDD and for their health care providers.

Angelman Syndrome (AS) is a rare genetic disorder that impacts 1:20,000 people. Challenging behaviour, such as severe injurious behaviour, aggression and frequent unprovoked episodes of laughter are a significant problem among adults with AS that adversely impacts an individual\'s quality of life. This study, for the first time, aims understand the characteristic of challenging behaviour, its frequency, and the factors associated with it in adults with AS. Data from participants with AS (N = 37; aged 18-46 years) registered with the Global Angelman Registry, were divided into challenging behaviour and non-challenging behaviour groups based on the presence or absence of 50% of the behaviours recorded in the registry. Descriptive statistics, chi-squared and t-test analysis were conducted to assess the impact of variables on challenging behaviour. Multiple regressions were conducted to investigate the predictors of challenging behaviour. 56% of the sample presented with challenging behaviour. Disorders of arousal, self-injury, behaviour dysregulation, repetitive behaviour, and the lack of physical therapy accounted for 59% of the variance of challenging behaviour in this population. It was found that challenging behaviour was very common in this population. A significant association was found between challenging behaviour and both sleep arousal and the lack of physical therapy. Sleep arousal and the lack of physical therapy were the key factors associated with challenging behaviour in this study. Targeted interventions are needed to decrease challenging behaviour and future research should focus on sleep interventions and increased opportunities for physical therapy.

Adults with Intellectual Disability who show severe challenging behaviour need intensive individual support. If intensive support proves to be insufficient, extra intensive support can be provided in the Netherlands, which is characterized by more time for individual care. The present study evaluates the impact of extra intensive support over time. Client characteristics of adults receiving intensive support (IS, N=70) or extra intensive support (IS+, N=35) are compared and the impact of provided support on challenging behaviour (Developmental Behaviour Checklist-Adults), adaptive behaviour (Vineland II), and Quality of Life (San Martin Scale) is evaluated over a three years period. Compared to adults receiving intensive support, those receiving extra intensive support initially showed higher intensity of challenging behaviour, higher number of mental health diagnoses and stronger focus on goals to reduce challenging behaviour. Over time, intensity of challenging behaviour decreased in adults receiving extra intensive support, although Quality of Life and adaptive functioning did not improve. Results show that the indications for receiving extra intensive support are clear and that the extra support is effective over time. It is concluded that extra individual support is serving those who need this support.

BACKGROUND: Compared with the general population, adults with an intellectual developmental disorder (IDD) are more likely to develop mental health problems and to receive high levels of psychotropic medication, particularly antipsychotics. The emotional development (ED) approach may help to better understand the nature of challenging behaviour (CB) and tailor treatment and support accordingly. The aim of this retrospective study was to investigate the impact of the ED approach on the prescription of psychotropic medication during inpatient psychiatric treatment.
METHODS: The clinical data of 1758 patients were analysed within a retrospective study design over a period of 12 years. ED level was assessed (1) for the first time (INITIAL-SEO), (2) during a previous hospital stay (PAST-SEO) or (3) not at all (NO-SEO). The effects of the ED assessment and the respective intervention during the current admission on the number of psychotropics and the number and dosage of antipsychotics were analysed for the total sample, including those with CB, autism spectrum disorders and psychosis. Group differences were analysed by a chi-square test and a one-factorial analysis of variance. For analysing the impact of the application of the ED approach on psychotropic medication, a covariance model was applied. Changes between the subsamples were analysed by t-tests for dependent samples.
RESULTS: The ED approach had a significant impact on reducing the overall amount of psychotropic medication and the dosage of antipsychotics in all patients with IDD. These effects were mainly attributable to those showing CB. In patients with autism spectrum disorders, the developmental approach reduced the number of antipsychotics. No effects could be observed in patients with psychosis; in this subsample, both the number and dosage of antipsychotics increased.
CONCLUSIONS: The application of the ED approach in the current hospital stay reduced the number of psychotropic drugs and the number and dosage of antipsychotics, especially in those patients with IDD and CB, but also in those with autism spectrum disorders.

BACKGROUND: Studies have found that presence of challenging behaviours and mental health problems limits employment for people with intellectual disabilities. This study investigates the associations between age, gender, living condition, level of intellectual disability, diagnoses, behaviour, mental health, and employment in adults with intellectual disabilities in Norway.
METHODS: A cross-sectional community-based survey including 214 adult participants (56% men) with intellectual disabilities.
RESULTS: In our sample, 25% had no organised day activity, 27% attended non-work day care, 19% attended sheltered employment, or day care with production, without pay and 29% worked in paid sheltered employment. One participant attended mainstream employment. Moderate and severe/profound level of intellectual disability, possible organic condition and irritability significantly reduced the odds of employment (paid and unpaid).
CONCLUSIONS: Findings suggest unequal access to the sheltered employment that was meant to be inclusive. More individualised evaluation of prerequisites is suggested to further facilitate employment for this group.