Challenging behaviour and its correlates in preschool-aged children with an intellectual disability in Saudi Arabia.

BACKGROUND: Young children with an intellectual disability have a higher risk of developing challenging behaviour (CB). Early identification of risk factors for CB allows for earlier intervention. The aim of the current study was to assess the prevalence and correlates of CB in preschool-aged children with an intellectual disability in Riyadh (Saudi Arabia). METHODS: One hundred twenty parents of preschool-aged (3-6 years old) children who had been diagnosed (DSM-5 criteria) with an intellectual disability completed an online cross-sectional survey that included demographic, CB and child adaptive skills measures. The relationship between CB and 15 potential correlates (e.g. gender and degree of disability) was examined using independent samples t-tests and chi-squared tests. RESULTS: Most preschool-aged (3-6 years old) children with an intellectual disability exhibited CB (78.8%, 95% CI [70.3, 85.8]), with a 63.2% prevalence rate for self-injurious behaviours (95% C [53.8, 72.0]), a 57.6% rate for aggressive destructive behaviours (95% CI [48.2, 66.7]) and a 25% rate for stereotypy (95% CI [17.7, 34.0]). The likelihood of a child engaging in self-injurious and stereotyped behaviours was higher in those with autism and intellectual disability. Children with Down syndrome displayed fewer stereotyped behaviours. Low adaptive skill levels were associated with increased overall CB, self-injurious and stereotyped behaviours. CONCLUSIONS: The identified correlates of CB in this population and cultural context align with the international evidence base. Findings have implications for the importance of early systematic screening of CB in preschool-aged children in Saudi Arabia and other similar contexts. Preventative measures are suggested for preschool-aged children with an intellectual disability who are more likely to demonstrate CB, such as those with autism and poor adaptive behaviours.

A retrospective cohort study of prescription drug use among youth with intellectual/developmental disabilities in British Columbia.

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. DISCUSSION: 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.

Impact of the emotional development approach on psychotropic medication in adults with intellectual and developmental disabilities: a retrospective clinical analysis.

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.

Behavioural phenotype of SYNGAP1-related intellectual disability.

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.

Process evaluation of the implementation of the ABC method, an intervention for nurses dealing with challenging behaviour of patients with brain injury.

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.

The Family Game to support parents with intellectual disability in managing challenging behaviours: A replication.

BACKGROUND: Although many parents with intellectual disability (ID) demonstrate good parenting practices, some parents experience difficulties in managing challenging behaviours. One potential solution to this issue involves using The Family Game, a program designed to teach parents with ID how to manage challenging behaviours in their child. AIMS: The purpose of our study was to conduct an independent replication of an investigation that had been performed by the developer of the program. MATERIALS & METHODS: We used a multiple baseline design to examine the effects of The Family Game on the behaviour of two parents with ID who had a 3-year-old child. RESULTS: Similarly to the original study, our results indicate that The Family Game improved the use of effective parenting strategies during role play, but that these gains failed to generalise to real-life settings. CONCLUSION: The study further supports the necessity of adding novel strategies to the game to better promote generalisation.

'Key skills' building in schools as a possible approach to reducing and preventing challenging behaviour.

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. METHOD: 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). CONCLUSION: Building 'key skills' in children with an intellectual disability may help reduce or prevent challenging behaviour.

Item-validity analysis of the SED-S in a multicentre study of adults with intellectual disabilities.

BACKGROUND: Valid and reliable instruments for measuring emotional development are critical for a proper diagnostic assignment in individuals with intellectual disabilities. This exploratory study examined the psychometric properties of the items on the Scale of Emotional Development-Short (SED-S). METHOD: The sample included 612 adults with intellectual disabilities (Mage = 37.35, SDage = 13.27; 59.8% males). Item validity analysis comprising sensitivity and specificity rates and discriminatory power were determined. RESULTS: The relative mean frequency of 'yes' answers to all 200 items was 29.5%. The mean sensitivity rate was 67.5% and the mean specificity rate was 79.3%. Most items (85.0%) showed good discriminatory power with the adjacent stage(s), especially between SED-1, SED-2, SED-3 and SED-4. Particularly in SED-4 some items showed weaknesses in the differentiation between these stages. DISCUSSION: This study adds to previous validation studies by showing that most SED-S items have psychometrically sound properties.

Interventions addressing challenging behaviours in Arab children and adults with intellectual disabilities and/or autism: A systematic review.

BACKGROUND: Arabs with intellectual disabilities and/or autism may exhibit challenging behaviour that affects them and their caregivers. Early, appropriate intervention may reduce these effects. This review synthesised and critically appraised challenging behaviour intervention research for this population. METHODS: All published empirical research on challenging behaviour interventions for Arabs with intellectual disabilities and/or autism was included. In September 2022, 15 English and Arabic databases yielded 5282 search records. Studies were appraised using the MMAT. Review findings were narratively synthesised. RESULTS: The 79 included studies (n = 1243 participants) varied in design, intervention, and evaluation method. Only 12.6% of interventions were well-designed and reported. Arab interventions primarily targeted children, were applied collectively on small samples, lacked individualised assessment, and were based on an inconsistent understanding of challenging behaviour. CONCLUSION: The evidence base on interventions for Arabs with intellectual disabilities and/or autism and challenging behaviour needs strengthening. Attention should be given to culturally relevant adaptations.

Mental health, challenging behaviour, diagnosis, and access to employment for people with intellectual disabilities in Norway.

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. METHOD: 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). CONCLUSION: 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.

Evaluating the effectiveness of the Complex Behaviour Forum-A multisystem approach to supporting people with complex challenging behaviour.

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.

A systematic review and meta-analysis of the effectiveness of interventions targeting the parent-child relationship in families of children with an intellectual disability.

BACKGROUND: The review aimed to investigate the effectiveness of parent-child relationship interventions for families of children with intellectual disability up to 12 years old. METHODS: Quasi-experimental or randomised controlled trials (RCTs) of interventions targeting the parent-child relationship where ≥50% of children had an intellectual disability were included. Meta-analyses of parent-child relationship outcomes and child outcomes used standardised mean difference as the effect size. RESULTS: Twenty-seven papers were included (N = 1325). Parent-child relationship outcomes improved significantly (n = 1325; g = 1.08, 95% CI: 0.64, 1.52) with a large effect size that was robust to sensitivity analyses. Child developmental outcomes improved significantly (n = 1082; g = 0.65, 95% CI: 0.23, 1.07), and indicated a large effect size for child socialisation and communication. CONCLUSIONS: Findings suggest that interventions targeting parent-child relationship quality are associated with substantial improvements in parent-child relationship and may improve child outcomes related to socialisation and communication.

Process evaluation of a parenting intervention for pre-schoolers with intellectual disabilities who display behaviours that challenge in the UK.

BACKGROUND: Stepping Stones Triple P (SSTP) is a complex parent-mediated intervention aimed to reduce behaviours that challenge in children with moderate to severe intellectual disabilities, aged 30-59 months. METHODS: To formulate a comprehensive understanding of SSTP implementation in the UK, we conducted a process evaluation collecting stakeholder views and considering intervention fidelity, dose, reach, delivery adaptations, and acceptability. RESULTS: Fidelity and quality of delivery ratings were high. Parents perceived SSTP as valuable, reporting increased parental confidence and understanding of the child's behaviours. However, only 30% of families received an adequate dose of the intervention. Parents who only received treatment as usual described feeling abandoned by current services. Service managers emphasised the importance of availability of resources and therapist training for successful intervention delivery. CONCLUSIONS: SSTP supports effective management of early-onset behaviours that challenge. Further work is needed to ensure equitable access to the intervention across health and social care services. TRIAL REGISTRATION: NCT03086876 - https://www. CLINICALTRIALS: gov/ct2/show/NCT03086876?term=Hassiotis+Angela&draw=1&rank=1.

Challenging behaviour and epilepsy in patients with intellectual disability: frequency and mutual association.

Comorbid epilepsy and challenging behaviours is quiet common in patients with ID (intellectual disability). This study aims to determine the frequency and mutual association between epilepsy and challenging behaviours. In this cross-sectional analytical study, 252 patients were enrolled through convenient sampling technique. Comorbid epilepsy and CB (challenging behaviour) were seen in 111 (44.6%) and 116 (46.6%) patients, respectively. Epilepsy and severity of intellectual disability (ID) are statistically and significantly associated with challenging behaviour. This study concluded that comorbid epilepsy is more common among people with ID as compared to the general population. The clinical variables, i.e. comorbid epilepsy and severity of ID have statistically significant association with the CB.

A three-years follow-up of extra intensive support for individuals with intellectual disability and severe challenging behaviour in the Netherlands.

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.

Factors affecting the feelings of safety among individuals with mild intellectual disabilities and severe challenging behaviour in residential care: A qualitative study of professional and service users' perspectives.

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.

Antiseizure medications prescribing for behavioural and psychiatric concerns in adults with an intellectual disability living in England.

Antiseizure medications (ASMs) are the second most widely prescribed psychotropic for people with intellectual disabilities in England. Multiple psychotropic prescribing is prevalent in almost half of people with intellectual disabilities on ASMs. This analysis identifies limited evidence of ASM benefit in challenging behaviour management and suggests improvements needed to inform clinical practice.

Barriers and enablers to managing challenging behaviours after traumatic brain injury in the acute hospital setting: a qualitative study.

BACKGROUND: Challenging behaviours after traumatic brain injury (TBI) in the acute setting are associated with risk of harm to the patient and staff, delays in commencing rehabilitation and increased length of hospital stay. Few guidelines exist to inform practice in acute settings, and specialist services providing multi-disciplinary expertise for TBI behaviour management are predominantly based in subacute inpatient services. This study aims to investigate acute and subacute staff perspectives of barriers and enablers to effectively managing challenging behaviours after TBI in acute hospital settings. METHODS: Qualitative focus groups were conducted with 28 staff (17 from acute setting, 11 from subacute setting) across two sites who had experience working with patients with TBI. Data were analysed using inductive-deductive reflexive thematic analysis. Data were applied to the constructs of the integrated-Promoting Action on Research Implementation in Health Services (i-PARIHS) framework to generate themes representing barriers and enablers to managing challenging behaviours after TBI in the acute hospital setting. RESULTS: Four barriers and three enablers were identified. Barriers include (1) Difficulties with clinical decision making; (2) Concerns for risks to staff and patients; (3) Hospital environment; (4) Intensive resources are required. Enablers were (1) Experienced staff with practical skills; (2) Incorporating person-centred care; and (3) Supportive teams. CONCLUSION: These findings can inform pre-implementation planning for future improvements to TBI behaviour management in acute hospital settings. Difficulties with clinical decision making, concerns for risks of injury, the hospital environment and lack of resources are major challenges. Implementation strategies developed to address barriers will need to be trialled, with multi-disciplinary team approaches, and tailored to the acute setting.

Mapping and identifying service models for community-based services for children with intellectual disabilities and behaviours that challenge in England.

BACKGROUND: One in five children with an intellectual disability in the UK display behaviours that challenge. Despite associated impacts on the children themselves, their families, and services, little research has been published about how best to design, organise, and deliver health and care services to these children. The purpose of this study was to describe how services are structured and organised ("service models") in England for community-based health and care services for children with intellectual disability who display behaviours that challenge. METHODS: Survey data about services were collected from 161 eligible community-based services in England. Staff from 60 of these services were also interviewed. A combination of latent class and descriptive analysis, coupled with consultation with family carers and professionals was used to identify and describe groupings of similar services (i.e., "service models"). RESULTS: The latent class analysis, completed as a first step in the process, supported a distinction between specialist services and non-specialist services for children who display behaviours that challenge. Planned descriptive analyses incorporating additional study variables were undertaken to further refine the service models. Five service models were identified: Child and Adolescent Mental Health Services (CAMHS) (n = 69 services), Intellectual Disability CAMHS (n = 28 services), Children and Young People Disability services (n = 25 services), Specialist services for children who display behaviours that challenge (n = 27 services), and broader age range services for children and/or adolescents and adults (n= 12 services). CONCLUSIONS: Our analysis led to a typology of five service models for community health and care services for children with intellectual disabilities and behaviours that challenge in England. Identification of a typology of service models is a first step in building evidence about the best provision of services for children with intellectual disabilities who display behaviours that challenge. The methods used in the current study may be useful in research developing service typologies in other specialist fields of health and care. STUDY REGISTRATION: Trial Registration: Current Controlled Trials ISRCTN88920546, Date assigned 05/07/2022.

The Behaviour Support Elements Checklist: Profiling intervention elements in community-based behaviour support for sexualised behavior after acquired brain injury.

BACKGROUND: The challenges associated with behavior dysregulation post acquired brain injury (ABI) are well documented. In a previous publication, we described a case series in which sexualized behavior post-ABI was reduced using multi-element behavior support interventions. In this publication, we describe the intervention elements used, as summarized using a one-page recording tool: The Behavior Support Elements Checklist (BSEC). INSTRUMENT: The BSEC contains three categories indicating the target for change: the individual with ABI, their support network members, or other environmental aspects. Each category lists a number of elements being used in the routine practice of a community-based behavior support service. RESULTS: In total, 173 intervention elements were recommended, averaging seven per participant. Elements from all three categories were routinely incorporated into interventions, but changes to the (category) environment were rated by clinicians as most effective in changing behavior; some elements (e.g., meaningful activities) were considered more effective than others (e.g., ABI education). CONCLUSIONS: The BSEC could assist service agencies and researchers to record and analyze clinician practices to improve service delivery, detect professional development needs, and steer resource allocation. Although the BSEC reflects the context in which it was constructed, it could readily be adapted to other service contexts.