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SATB2-associated syndrome (SAS) is a genetic syndrome characterised by intellectual disability, severe speech delay, and palatal and dental problems. Behaviours that challenge (BtC) are reported frequently; however, there is limited research on specific forms of BtC and the correlates of these behaviours. The current study explores correlates of well-defined BtC, self-injury, aggression, and property destruction, in SAS. Eighty-one parents/caregivers of individuals with SAS (53.1% male, Mage 10.12 years) completed questionnaire measures of health, behavioural, emotional, and autism characteristics. Individuals with SAS were grouped based on caregiver responses to the presence or absence of self-injury, aggression, and property destruction on the Challenging Behaviour Questionnaire. Rates of self-injury, aggression and property destruction were 42%, 77% and 49%, respectively. Between-group comparisons were conducted to compare characteristics between behaviour groups. Significantly differing characteristics were entered into separate hierarchical logistic regressions for each form of BtC. Behavioural comparisons indicated variation in the characteristics associated with each behaviour. All hierarchical logistic regression models were significant (p <.001): self-injury (χ2(5) = 38.46, R2 = 0.571), aggression (χ2(4) = 25.12, R2 = 0.414), property destruction (χ2(4) = 23.70, R2 = 0.346), explaining between 34.6% and 57.1% of the variance in behaviour presence. This is the first study to identify correlates of self-injury, aggression, and property destruction in SAS. Variability in the characteristics associated with each behaviour highlights the importance of specificity when examining BtC. Understanding correlates of specific forms of BtC has important implications for informing SAS-associated pathways to behavioural outcomes and the implementation of tailored behavioural interventions. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are more likely to be prescribed psychotropic medication than the general population and are frequently prescribed multiple medications. Understanding people with intellectual disabilities and carer perspectives is essential to improving the quality of psychotropic medication prescribing and usage. Method: A rapid review explored people with intellectual disabilities' understanding of psychotropic medications, as well as family members and paid carers, and how this understanding can be improved. Results: Twenty‐one journal articles were included. Lack of understanding of medication was universal, with participants often unaware of adverse effects, alternatives, and rights around medication. There was also a lack of involvement in decision making for all participants. Some interventions aimed at people with intellectual disabilities or paid carers helped to improve knowledge. Conclusion: Evaluating how best to improve psychotropic medication understanding for people with intellectual disabilities, family members and paid carers should be a focus for future research. [ABSTRACT FROM AUTHOR]

Managing agitation and other behaviours that challenge is a significant dementia care challenge. The priority is to find effective non-pharmacological interventions as drug treatments can have significant side effects. This review evaluates the effectiveness of structured physical activity on agitation in dementia. Our rapid review searched four electronic databases, Cochrane CENTRAL, MEDLINE, CINAHL and Embase, for interventional studies using a structured physical activity programme in people with dementia and studied the effect of this activity on behaviours that challenge. Study quality was assessed using CASP criteria and data was narratively synthesised. We included 13 studies in this review (four rated as high quality), involving a total of 1546 participants. Results were analysed according to exercise type, frequency and intensity of the intervention. Exercise is effective in reducing agitation and studies with higher adherence to exercise demonstrated more positive effects on agitation and behaviours that challenge. Physical activity can be effective in reducing agitation in older adults with dementia. Further research is needed to clarify the type of intervention that is most beneficial. Strategies to make physical activity more acceptable and available to people with dementia need to be established. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to evaluate the quality of information recorded in Behaviour Monitoring Charts (BMC) for Behaviours that Challenge (BtC) in dementia in an older adult inpatient dementia service in the North of England (Aim I) and to understand staff perceptions and experiences of completing BMC for BtC in dementia (Aim II). Design/methodology/approach: Descriptive statistics and graphs were used to analyse and interpret quantitative data gathered from BMC (Aim I) and Likert-scale survey responses (Aim II). Thematic analysis (Braun and Clarke, 2006) was used to analyse and interpret qualitative data collected from responses to open-ended survey questions and, separately, focus group discussions (Aim II). Findings: Analysis of the BMCs revealed that some of the data recorded relating to antecedents, behaviours and consequences lacked richness and used vague language (i.e. gave reassurance), which limited its clinical utility. Overall, participants and respondents found BMC to be problematic. For them, completing BMCs were not viewed as worthwhile, the processes that followed their completion were unclear, and they left staff feeling disempowered in the systemic hierarchy of an inpatient setting. Originality/value: Functional analysis of BMC helps identify and inform appropriately tailored interventions for BtC in dementia. Understanding how BMCs are used and how staff perceive BMC provides a unique opportunity to improve them. Improving BMC will support better functional analysis of BtC, thus allowing for more tailored interventions to meet the needs of people with dementia. [ABSTRACT FROM AUTHOR]

Background: The Draft Mental Health Bill proposes removal of both intellectual disability and autism from Section 3 of the Mental Health Act for England and Wales (MHA). This would lead to people with intellectual disability (PwID) and/or autism could not be detained beyond 28 days, in the absence of diagnosed co-occurring mental illness. Aim: To obtain views of psychiatrists working with PwID in England and Wales regarding the proposed MHA changes. This study focusses specifically on the impact on PwID. Methods: A cross-sectional online mixed methodology survey of Likert and free-text response questions was developed, to ascertain perceptions of proposed legislative changes to the MHA. A non-discriminatory exponential snowballing technique leading to non-probability sampling was used to disseminate the survey. Quantitative data was analysed using descriptive statistics, Mann-Whitney and Fisher's exact tests. Thematic analysis was conducted on free text responses. Results: A total of 82 psychiatrists (33%) from approximately 250 eligible completed the survey. Nearly two-thirds (64%) reported good awareness of the proposed changes, with over half (55%) reporting disagreement with the changes. Psychiatrists working in inpatient settings for PwID reported increased awareness of the changes, less agreement with the reforms, and increased expectations of the reforms having negative unintended consequences, compared to their peers working exclusively in the community. Consultants reported greater disagreement with the changes compared to their non-consultant peers. Qualitative analysis identified five main themes: impact on diagnosis and treatment, seeking alternative options, introducing inequities, resources, and meeting holistic care goals through the Care, Education and Treatment Reviews (CETR) process. Conclusion: Psychiatrists working with PwID report widespread disagreement with the proposed changes to the MHA for PwID, with greater levels of disagreement among those working in inpatient services. Caution with respect to the proposed changes, and monitoring of the impact of the changes if implemented, is advised. [ABSTRACT FROM AUTHOR]

Abstract 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.

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. [ABSTRACT FROM AUTHOR]

Background Stepping Stones Triple P is an adapted intervention for parents of young children with developmental disabilities who display behaviours that challenge, aiming at teaching positive parenting techniques and promoting a positive parent–child relationship. Objective To evaluate the clinical and cost-effectiveness of level 4 Stepping Stones Triple P in reducing behaviours that challenge in children with moderate to severe intellectual disabilities. Design, setting, participants A parallel two-arm pragmatic multisite single-blind randomised controlled trial recruited a total of 261 dyads (parent and child). The children were aged 30–59 months and had moderate to severe intellectual disabilities. Participants were randomised, using a 3 : 2 allocation ratio, into the intervention arm (Stepping Stones Triple P; n = 155) or treatment as usual arm (n = 106). Participants were recruited from four study sites in Blackpool, North and South London and Newcastle. Intervention Level 4 Stepping Stones Triple P consists of six group sessions and three individual phone or face-to-face contacts over 9 weeks. These were changed to remote sessions after 16 March 2020 due to the coronavirus disease 2019 pandemic. Main outcome measure The primary outcome measure was the parent-reported Child Behaviour Checklist, which assesses the severity of behaviours that challenge. Results We found a small non-significant difference in the mean Child Behaviour Checklist scores (−4.23, 95% CI −9.98 to 1.52, p = 0.146) in the intervention arm compared to treatment as usual at 12 months. Per protocol and complier average causal effect sensitivity analyses, which took into consideration the number of sessions attended, showed the Child Behaviour Checklist mean score difference at 12 months was lower in the intervention arm by −10.77 (95% CI −19.12 to −2.42, p = 0.014) and −11.53 (95% CI −26.97 to 3.91, p = 0.143), respectively. The Child Behaviour Checklist mean score difference between participants who were recruited before and after the coronavirus disease 2019 pandemic was estimated as −7.12 (95% CI −13.44 to −0.81) and 7.61 (95% CI −5.43 to 20.64), respectively (p = 0.046), suggesting that any effect pre-pandemic may have reversed during the pandemic. There were no differences in all secondary measures. Stepping Stones Triple P is probably value for money to deliver (−£1057.88; 95% CI −£3218.6 to −£46.67), but decisions to roll this out as an alternative to existing parenting interventions or treatment as usual may be dependent on policymaker willingness to invest in early interventions to reduce behaviours that challenge. Parents reported the intervention boosted their confidence and skills, and the group format enabled them to learn from others and benefit from peer support. There were 20 serious adverse events reported during the study, but none were associated with the intervention. Limitations There were low attendance rates in the Stepping Stones Triple P arm, as well as the coronavirus disease 2019-related challenges with recruitment and delivery of the intervention. Conclusions Level 4 Stepping Stones Triple P did not reduce early onset behaviours that challenge in very young children with moderate to severe intellectual disabilities. However, there was an effect on child behaviours for those who received a sufficient dose of the intervention. There is a high probability of Stepping Stones Triple P being at least cost neutral and therefore worth considering as an early therapeutic option given the long-term consequences of behaviours that challenge on people and their social networks. Future work Further research should investigate the implementation of parenting groups for behaviours that challenge in this population, as well as the optimal mode of delivery to maximise engagement and subsequent outcomes. Study registration This study is registered as NCT03086876 (https://www.clinicaltrials.gov/ct2/show/NCT03086876?term=Hassiotis±Angela&draw=1&rank=1). Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: HTA 15/162/02) and is published in full in Health Technology Assessment; Vol. 28, No. 6. See the NIHR Funding and Awards website for further award information. Plain language summary Research shows that in children without learning disabilities, parenting groups which support parents to develop skills to manage behaviours that challenge in their child can be helpful. The National Institute of Health and Care Excellence recommended that more research was needed to strengthen the evidence for such interventions for children with moderate to severe learning disability who are more likely to display behaviours that challenge in England. In this study, we tested in real-world conditions a programme called level 4 Stepping Stones Triple P, which has shown positive results in trials outside of the United Kingdom. Trained therapists delivered six groups and three individual sessions over 9 weeks to parents of children aged 30–59 months with moderate to severe learning disabilities. Two hundred and sixty-one parents were allocated to one of two arms by chance (randomisation): one received Stepping Stones Triple P and treatment as usual and the other treatment as usual only. Treatment as usual included support and advice by general practitioners or community child development teams. Our primary outcome was parent-reported child behaviour at 12 months after randomisation. We also collected data on other outcomes and carried out interviews with parents, service managers and therapists to find out their views about Stepping Stones Triple P. We did not find that Stepping Stones Triple P reduces behaviours that challenge in the child more than treatment as usual at 12 months. However, when we looked at people who received more than half of the sessions, there was a larger reduction in behaviours which suggests that Stepping Stones Triple P works for families if they attend the full programme. Stepping Stones Triple P seems to be good value for money, as we found that at 12 months (covering 10 months of costs), the Stepping Stones Triple P cost £1058 less than treatment as usual from a health and social care perspective. As such, Stepping Stones Triple P is fairly cheap to deliver and a suitable early intervention for behaviours that challenge especially because of positive feedback from parents. Throughout the trial, we included a Parent Advisory Group that oversaw study materials, interview topic guides and promotion of the study. Scientific summary Background Intellectual disability is a lifelong condition impairing an individual’s intellectual and adaptive functioning, affecting approximately 1.2 million children, young people and adults in England. Between 10% and 45% of children with intellectual disability display behaviours that challenge, including self-injury, aggression, destructiveness and stereotypical behaviours. These behaviours can be very distressing for both the parent and the child, and parents may find them difficult to manage. Interventions for early-onset conduct problems and disruptive behaviour in the general population are known to reduce such behaviours, improve long-term outcomes and reduce care costs. Early interventions are often delivered through group parenting programmes, which are known to increase parent efficacy through learning positive parenting techniques and contingency management strategies within a social learning framework. One such intervention, adapted for children with intellectual disability and socio-emotional disabilities, is Stepping Stones Triple P (SSTP). The SSTP programme combines psycho-educational and behavioural components, which aim to promote a positive parent–child relationship. The intervention also encourages the development of children’s skills within everyday parenting situations, for example during mealtimes, bathing or dressing. Studies outside the UK have shown that SSTP is effective, acceptable to parents, reduces behaviours that challenge and improves parenting styles. The current study (EPICC-ID) describes a randomised multicentre evaluation of level 4 group SSTP in very young children with moderate to severe intellectual disability. To our knowledge, it is the first study to test such an intervention in this population group in the UK (England). Objectives To undertake a pragmatic randomised controlled trial to evaluate level 4 group SSTP in addition to treatment as usual (TAU); To undertake an economic evaluation to assess the cost-effectiveness of the intervention compared to TAU. Research questions Does the addition of level 4 SSTP to TAU reduce behaviour that challenges displayed by children aged 30–59 months with moderate to severe intellectual disability at 12 months post randomisation compared to TAU alone? Does the addition of level 4 SSTP to TAU reduce behaviours that challenge at 12 months post randomisation in blind-rated observations and caregiver/teacher outcome measures? Is the addition of level 4 SSTP to TAU more cost-effective than TAU alone? Methods The current study was a pragmatic parallel two-armed multisite single-blind randomised control trial with a 3 : 2 randomisation ratio (SSTP vs. TAU). The chief investigator, researchers and the lead statistician were blinded to participant allocation. Altogether, 261 dyads (parent with index child) were enrolled in this trial, of whom 155 were allocated to the SSTP and TAU arm and 106 were allocated to the TAU arm alone. The inclusion criteria were (1) to be a parent aged 18 years or over, (2) consenting to take part, (3) having a child with moderate to severe intellectual disability, (4) the child to be aged 30–59 months at identification and (5) the child to display behaviours that challenge as reported by a parent over a 6-month period prior to the study. The participant was excluded if the child had mild, profound or no intellectual disability, if a sibling was participating in the study, or if the parent had insufficient English language skills to complete or understand the study questionnaires. Participants were recruited from various community services including Participant Identification Centres in four main areas in England: North West of England (Blackpool, Site 1), North London (Site 2), South London (Site 3) and North East of England (Newcastle, Site 4). The primary outcome measure was the parent-reported Child Behaviour Checklist (CBCL). We also assessed secondary outcomes using parent–child observations, other caregiver/teacher reports, questionnaires of parents’ mental health, stress, sense of competence and parent and child health-related quality of life. We further conducted a process evaluation using a mixed methods approach to assess intervention delivery (fidelity, dose, adaptations, reach) and to capture the views of the participants, therapists and service managers. The study was ethically reviewed and approved by the London – Camden and Kings Cross Research Ethics Committee (reference: 17/LO/0659). The last 18 months of the trial took place during the coronavirus disease 2019 (COVID-19) pandemic. Fifty-one out of 261 families were randomised after 16 March 2020 (i.e. the beginning of the pandemic) with 219 baseline and follow-up assessments carried out from that date to the end of the study (the last participant follow-up was completed in December 2021). We made changes to the study to comply with the public health measures implemented by the UK government. This ensured participant and researcher safety and allowed us to safeguard the study validity and quantify, where possible, the impact of this event. After the start of the pandemic, all study procedures, for example obtaining consent, carrying out assessments and delivering the intervention, were carried out remotely. We also adjusted the a priori statistical and health economic analysis plans to account for these changes. We were unable to continue carrying out behavioural observations and completing cognitive assessments with the children, as techniques for doing so remotely were unavailable at the time. Stepping Stones Triple P In the EPICC-ID study, we delivered a manualised level 4 SSTP intervention composed of six group sessions and three individual telephone or face-to-face contacts with the parent over a period of 9 weeks. Each group session lasted approximately 2.5 hours. Individual sessions took around 30 minutes. SSTP has the most evidence for efficacy, and while available in the UK via Triple P UK, it has not been formally tested for its clinical and cost-effectiveness and is not rolled out in the National Health Service or a part of the local offer (resources available from Local Authorities for children with disabilities). The group sessions were delivered in person until March 2020 and on the online platforms zoom and Microsoft Teams thereafter. Parents allocated to both arms also received a list of national resources and the Contact (a Family) charity guide for managing behaviours that challenge, which included signposting to social and health care support. Treatment as usual Treatment as usual was available to participants in both trial arms. The local services provided professional health and social care support, which was available at the time of the study at all of the sites. Our survey of parenting programmes showed that none of the sites offered SSTP to parents of children with intellectual disabilities. However, it is possible that parents of children with mild developmental delay who were ineligible for the trial could have been attending other universal parenting groups. Results Clinical effectiveness Our primary analysis was based on intention-to-treat in which we adjusted for baseline CBCL total score, centre, level of intellectual disability and therapist clustering, showed a mean difference between arms of −4.23 [95% confidence interval (CI) −9.98 to 1.52, p = 0.146]. We found that SSTP, as delivered in this trial, did not reduce behaviours that challenge compared to TAU at 12 months post-randomisation. Our initial sample size estimation was predicated on a minimal clinically significant difference of eight points between the two study arms. Of the 155 patients who were randomised to the SSTP arm, 50 participants were adherent to the SSTP intervention, meaning they attended at least 4 (out of 6) group sessions and 2 (out of 3) individual sessions. We carried out a per-protocol analysis which excluded non-adherent participants; we found that the intervention effect at 12 months was −10.77 (95% CI −19.12 to −2.42, p = 0.014). We also carried out a complier-average causal effect (CACE) analysis to measure the effect of the intervention on CBCL total scores at 12 months. We found a reduction of −11.53 (95% CI −26.97 to 3.91, p = 0.143) compared to TAU. We further performed a subgroup analysis to investigate whether the effect of SSTP differed depending on whether recruitment was before or after 16 March 2020. In this model, the mean difference of the effect of SSTP on CBCL total scores at 12 months was estimated as −7.12 (95% CI −13.44 to −0.81) and 7.61 (95% CI −5.43 to 20.64), respectively, with a p = 0.046. This suggests that the effect of SSTP was different before and during the pandemic. The point estimates suggest the direction of effect may have reversed during the pandemic. There were no statistically significant differences between arms in any of the secondary outcome measures. However, we noted a reduction in negative child behaviours as shown in observations of parent–child interaction. A total of 20 serious adverse events were reported, with 12 in the SSTP and 8 in the TAU arms. Of these, 13 were reported for children and 7 for parents. None of these were determined to be related to the intervention. Cost-effectiveness We found that training in level 4 SSTP costs £26 per participant. From a health and social care perspective, SSTP is cost-effective at −£1057.88 per participant (95% CI −£3218.6 to −£46.67). A cost-utility analysis within the cost-effectiveness approach indicates a non-significant quality-adjusted life-year (QALY) difference of 0.005 (95% CI −0.023 to 0.051). Using National Institute of Health and Care Excellence (NICE) thresholds for willingness to pay (WPT) for the intervention, there is an 89% probability that SSTP is cost-effective compared to TAU at a WTP for a QALY gained of £20,000 and £30,000. There is a 90% probability that SSTP is cost-effective compared to TAU at a WTP for a QALY gained of £13,000. Therefore, a rollout of an alternative parenting programme such as SSTP is likely dependent on how behaviours that challenge may be prioritised within a host of other clinical considerations at local and national levels. Process evaluation A total of 155 parents were randomised to receive SSTP and 91 (59%) attended at least one group session. The remainder of parents did not attend any sessions. Group sizes ranged from 1 to 8 [M = 3.64, standard deviation (SD) = 1.66]. Eleven therapists delivered the intervention across all sites. Fidelity scores ranged from 7 to 10 (M = 9.38, SD = 0.96). Eight sessions (62%) were scored as having the maximum score for fidelity. In terms of quality, two sessions were rated as 3 (adequate), with the remainder of the sessions being rated at 4 (good). We interviewed service managers to understand their views on possible challenges with the implementation and delivery of this intervention. They expressed concerns about potential low interest by parents due to competition with other therapies being offered in their services. However, none of those other therapies specifically address behaviours that challenge displayed by children with developmental disabilities nor were delivered in groups. Service managers described challenges finding a venue with a good location, appropriate equipment and parking facilities. There were several adaptations made to the delivery of SSTP, especially during COVID-19 when all sessions were moved online. The benefits and challenges of remote delivery were discussed with therapists and advice was obtained from the UK Triple P providers. Some benefits included larger group sizes and increased flexibility for parents and therapists with the timings and length of sessions. However, remote delivery limited opportunities for informal conversations between participants and was a challenge for rapport building, which is essential for group therapy. Overall, therapists found the intervention helpful and enjoyed the training and delivery. They also appreciated the opportunity to have expert group supervision. Therapists expressed concerns about some parents’ ability to comprehend and apply the skills taught. Therapists felt that flexibility may be needed in the number of sessions offered for parents who struggle with learning new skills or managing behaviour change. We also conducted interviews with 18 parents from the study (9 in each arm). Parents who received the SSTP enjoyed learning new techniques and strategies for managing their child’s behaviours, such as distraction the child during a meltdown, planning activities, setting house rules using visual aids (e.g. symbols, timetables) and using reward charts. The intervention boosted their confidence as a parent and helped them to better understand and accept their child’s behaviours. Most of the respondents were in favour of the group format, which provided peer support, normalised their situation and allowed them to create valuable networks with others. Parents described timing, group size, transport and setting as barriers affecting the accessibility of the groups, which are important to consider when delivering this programme. Conclusion The main statistical analysis did not reveal any statistical differences in mean CBCL scores between the intervention arms, suggesting that SSTP at 12 months is not effective compared with TAU. However, the sensitivity analyses showed that those receiving the intervention experienced a positive, albeit non-statistically significant change in the child’s behaviours of concern (reduction). Parents reported that the intervention boosted their confidence and skills, and the group format enabled them to learn from others and receive peer support. Overall, the findings suggest the intervention has clinical utility and should be available to underserved children who are more likely to have long-term adverse consequences due to the early onset of behaviours that challenge. Further, SSTP appears to be cost-effective and well within the NICE threshold for cost-effectiveness at £20,000–30,000 and at the lower cost of £13,000. Therefore, there are indications the intervention may be beneficial under certain conditions and can be delivered within NHS care. Further research is needed to explore and find solutions to the implementation of parenting groups for behaviours that challenge in this underserved population, as well as the optimal mode of delivery to maximise engagement and outcomes. Study registration This study is registered as NCT03086876. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: HTA 15/162/02) and is published in full in Health Technology Assessment; Vol. 28, No. 6. See the NIHR Funding and Awards website for further award information.

SUMMARY: On average, 49–63% of people with intellectual disabilities and/or autism spectrum disorder (ASD) are prescribed psychotropic medications to treat psychopathology, including psychiatric illness, behaviours that challenge and the core symptoms and associated behaviours of these developmental disorders. In many cases, psychotropics, particularly antipsychotics, are used off-label without a proper indication, particularly to manage behaviours that challenge. The RCTs show moderate evidence supporting the efficacy of low-dose risperidone and some preliminary evidence for aripiprazole in treating behaviours that challenge among children with ASD and/or intellectual disabilities. The RCT-based evidence for the other psychotropics is equivocal, so no definitive conclusions can be made on their efficacy. Polypharmacy and the use of high doses of antipsychotics are prevalent in this population, leading to the risk of adverse events and drug–drug interactions. Despite various national and international guidelines, and government initiatives encouraging reduced psychotropic use, there is little evidence of this happening; on the contrary, the use of antidepressants, mood stabilisers and benzodiazepines may be increasing. A concerted multi-agency effort is urgently needed to address this significant public health concern of the overmedication of people with intellectual disabilities and/or ASD. [ABSTRACT FROM AUTHOR]

Background/objective(s) Psychotropic medications are commonly prescribed among adults with intellectual disability, often in the absence of a psychiatric diagnosis. The aim of this scoping review is to provide an overview of the extent, range, and nature of the available research on medication use and practices and medication management in people with intellectual disability taking psychotropic medications for behaviours that challenge.Materials and methods A scoping review of research studies (qualitative, quantitative, and mixed design) and Grey Literature (English) was carried out. Databases included: Ovid MEDLINE, Embase, CINAHL, JBI Evidence Synthesis, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, PsycINFO, and Scopus. A three-step search strategy was followed, with results screened by two independent reviewers. Data was extracted independently by two reviewers using a data extraction tool with results mapped and presented using a narrative form supported by tables and diagrams to the research questions.Results Following the removal of duplicates, records were screened, full texts assessed, and 49 studies were included. Medication outcomes included reduced repetitive, stereotypic, and/or aggressive behaviours. High dosing/prescribing in the setting of an absent/unclear clinical indication was associated with worsening of symptoms for which psychotropics were prescribed. While psychotropics had a role in managing behaviours that challenge, reducing or discontinuing psychotropics is sometimes warranted. Study designs were frequently pragmatic resulting in small sample sizes and heterogeneous cohorts receiving different doses and combinations of medications. Access to multidisciplinary teams, guidelines, medication reviews, staff training, and enhanced roles for carers in decision-making were warranted to optimize psychotropic use.Conclusions These findings can inform prescribing interventions and highlight the need for timely and comprehensive patient outcome data, especially on long-term use of high doses of psychotropics and what happens when reduce or stop prescribing these doses.KEY MESSAGESPsychotropic medications are frequently prescribed for people with intellectual disabilities, often at high doses and these medications are associated with both positive and negative patient outcomes.Work to rationalize psychotropic use has been reported with interventions aiming to reduce polypharmacy or deprescribe a single psychotropic medicine. These interventions had mixed success and risk of relapse was documented in some studies.Limitations in sample size and heterogenous patient cohorts make it challenging to understand the risks and benefits associated with reducing or stopping psychotropic medicines.Patient, carer, and clinician partnerships are critical to advance medication management.

Psychotropic medications are commonly prescribed among adults with intellectual disability, often in the absence of a psychiatric diagnosis. The aim of this scoping review is to provide an overview of the extent, range, and nature of the available research on medication use and practices and medication management in people with intellectual disability taking psychotropic medications for behaviours that challenge. A scoping review of research studies (qualitative, quantitative, and mixed design) and Grey Literature (English) was carried out. Databases included: Ovid MEDLINE, Embase, CINAHL, JBI Evidence Synthesis, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, PsycINFO, and Scopus. A three-step search strategy was followed, with results screened by two independent reviewers. Data was extracted independently by two reviewers using a data extraction tool with results mapped and presented using a narrative form supported by tables and diagrams to the research questions. Following the removal of duplicates, records were screened, full texts assessed, and 49 studies were included. Medication outcomes included reduced repetitive, stereotypic, and/or aggressive behaviours. High dosing/prescribing in the setting of an absent/unclear clinical indication was associated with worsening of symptoms for which psychotropics were prescribed. While psychotropics had a role in managing behaviours that challenge, reducing or discontinuing psychotropics is sometimes warranted. Study designs were frequently pragmatic resulting in small sample sizes and heterogeneous cohorts receiving different doses and combinations of medications. Access to multidisciplinary teams, guidelines, medication reviews, staff training, and enhanced roles for carers in decision-making were warranted to optimize psychotropic use. These findings can inform prescribing interventions and highlight the need for timely and comprehensive patient outcome data, especially on long-term use of high doses of psychotropics and what happens when reduce or stop prescribing these doses. Psychotropic medications are frequently prescribed for people with intellectual disabilities, often at high doses and these medications are associated with both positive and negative patient outcomes. Work to rationalize psychotropic use has been reported with interventions aiming to reduce polypharmacy or deprescribe a single psychotropic medicine. These interventions had mixed success and risk of relapse was documented in some studies. Limitations in sample size and heterogenous patient cohorts make it challenging to understand the risks and benefits associated with reducing or stopping psychotropic medicines. Patient, carer, and clinician partnerships are critical to advance medication management. [ABSTRACT FROM AUTHOR]

SUMMARY: Up to a fifth of people with intellectual disabilities display challenging behaviour that has a significant impact on their health and quality of life. Psychotropic medication does not appear to confer any clinical benefits beyond risk reduction in acute situations. However, very few non-pharmacological treatments have clear evidence of clinical and cost-effectiveness and there is therefore often a dearth of advice as to which components or interventions would be helpful. To our knowledge no single model has been developed to provide a clear path from understanding the behaviour to the implementation of a therapeutic approach for such a complex clinical problem. In this article we describe a stepped-care model that needs to be further operationalised in the assessment and management of behaviours that challenge in adults with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Experience Based Co-Design (EBCD) and co-production are interdisciplinary collaborative approaches to improve health care services by involving all stakeholders. These approaches capture the experiences of all stakeholders who come in contact with services and use experiences as evidence to promote and implement service changes. The use of psychotropic medications for behaviours that challenge (BtC) in people with intellectual disabilities (ID) is a complex issue because of its off-licence use and use in combination with other medications for physical and psychiatric comorbidities, which leads to overmedication of people with ID. As support staff plays a pivotal role in the prescribing for people with ID, we have developed a staff training programme, SPECTROM, to help reduce overmedication. A project team developed SPECTROM under the guidance of a Programme Development Group (PDG) consisting of 21 stakeholders. The PDG analysed data from a literature review, four focus groups and a co-design event day involving 26 stakeholders. In this paper, we have presented data based on the findings from the co-design event day, primarily on the issue of support staff effectively liaising with professionals such as doctors, nurses, and other community learning disability team members. In-depth information and recommendations were proposed at the co-design event, which helped develop the draft SPECTROM. The draft was finalised after receiving feedback from 56 stakeholders. Co-production and a modified EBCD can be successfully used to create training interventions and improve health care services. More research should utilise co-production and EBCD and use service users' experiences to develop interventions and improve health care services. [ABSTRACT FROM AUTHOR]

Experience Based Co-Design (EBCD) and co-production are interdisciplinary collaborative approaches to improve health care services by involving all stakeholders. These approaches capture the experiences of all stakeholders who come in contact with services and use experiences as evidence to promote and implement service changes. The use of psychotropic medications for behaviours that challenge (BtC) in people with intellectual disabilities (ID) is a complex issue because of its off-licence use and use in combination with other medications for physical and psychiatric co-morbidities, which leads to overmedication of people with ID. As support staff plays a pivotal role in the prescribing for people with ID, we have developed a staff training programme, SPECTROM, to help reduce overmedication. A project team developed SPECTROM under the guidance of a Programme Development Group (PDG) consisting of 21 stakeholders. The PDG analysed data from a literature review, four focus groups and a co-design event day involving 26 stakeholders. In this paper, we have presented data based on the findings from the co-design event day, primarily on the issue of support staff effectively liaising with professionals such as doctors, nurses, and other community learning disability team members. In-depth information and recommendations were proposed at the co-design event, which helped develop the draft SPECTROM. The draft was finalised after receiving feedback from 56 stakeholders. Co-production and a modified EBCD can be successfully used to create training interventions and improve health care services. More research should utilise co-production and EBCD and use service users’ experiences to develop interventions and improve health care services.

This study explored the experiences of people with intellectual disabilities who live with others who display behaviours that challenge. Previous research has focused on the impact of behaviours that challenge on staff and families but less is known about the effect it has on service-users. Semi-structured interviews were conducted with six participants who were recruited from a service specialising in the management of behaviours that challenge. Data were transcribed verbatim and analysed using Interpretative Phenomenological Analysis. Four superordinate themes were identified: the emotional impact of others' behaviours that challenge; participants' perceptions of behaviours that challenge; participants' own experiences engaging in behaviours that challenge; and things that help. Sub-themes were also identified under each superordinate theme. People with an intellectual disability are knowledgeable about behaviours that challenge, have insight into potential causes, and can offer suggestions as to what might help. Results were discussed in relation to clinical implications and methodological strengths. Living with others who engage in behaviours that challenge has a significant impact on the well-being of people with an intellectual disability. People with an intellectual disability need to be empowered through inclusion in the decisions that concern them, especially in relation to their living circumstances. This is vital in order to improve the quality of life and mental well-being, enhance opportunities for skill development and promote independence. [ABSTRACT FROM AUTHOR]

Purpose: This article aims to analyse the relationship between staff burnout and resistance to change as well as the implications for leadership., Design/methodology/approach: The Job Demands Resource Model, the Social Exchange Theory, and the Model of Socially Induced Burnout were used to analyse the relationship of burnout with resistance to change., Findings: Leadership support is essential in reducing the influence of job demands on staff and on overcoming burnout so that resistance to change is prevented., Originality/value: This lies on the development of a leadership approach based on the factors that influence burnouted staff against change., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Research suggests that providing staff with input in relation to Positive Behavioural Support (PBS) can have beneficial outcomes. Much of this research, however, fails to take account of systemic issues and does not include a control group. Method: We used a non‐randomised, controlled group design to evaluate accredited PBS programmes, delivered as part of a systemic, regional and workforce development approach. We compared outcomes of those attending the programmes (n = 240) with a control group (n = 54), pre‐ and post‐intervention and at 3‐months follow‐up. Results: The programme and its wider impact were rated positively. Significant intervention effects were found for staff practice and retention, but not for staff knowledge and attributions, or behaviours that challenge and quality of life of those being supported. Conclusions: The results are discussed in the context of the study limitations and restrictions resulting from the Covid‐19 pandemic. [ABSTRACT FROM AUTHOR]

Behaviours that challenge (BtC) are common in people with intellectual disability (ID) and associated with negative long-term outcomes. Reliable characterisation of BtC and behavioural function is integral to person-centred interventions. This systematic review and meta-analytic study quantitatively synthesised the evidence-base for the internal consistency, inter-rater reliability, and test-retest reliability of measures of BtC and behavioural function in people with ID (PROSPERO: CRD42021239042). Web of Science, Embase, PsycINFO and MEDLINE were searched from inception to March 2024. Retrieved records (n = 3691) were screened independently to identify studies assessing eligible measurement properties in people with ID. Data extracted from 83 studies, across 29 measures, were synthesised in a series of random-effects meta-analyses. Subgroup analyses assessed the influence of methodological quality and study-level characteristics on pooled estimates. COSMIN criteria were used to evaluate the measurement properties of each measure. Pooled estimates ranged across measures: internal consistency (0.41–0.97), inter-rater reliability (0.29–0.93) and test-retest reliability (0.52–0.98). The quantity and quality of evidence varied substantially across measures; evidence was frequently unavailable or limited to a single study. Based on current evidence, candidate measures with the most evidence for internal consistency and reliability are discussed; however, continued assessment of measurement properties in ID populations is a key priority. • Many measures of behaviours that challenge (BtC) and behavioural function exist. • The quality and quantity of evidence for measure IC, IRR and TRTR is variable in intellectual disability populations. • BtC measures with the most evidence for IC, IRR and TRTR are the ABC irritability scale, BPI-01 and BPI-Short Form. • Behavioural function measures with the most evidence for IC, IRR and TRTR are the FACT, QABF, and QABF-Short Form. [ABSTRACT FROM AUTHOR]

Background: We used a qualitative approach to explore the experiences of social care staff regarding the provision of positive behavioural support (PBS) to people with an intellectual disability at the height of the Covid‐19 restrictions. Method: We conducted semi‐structured interviews with 19 staff who had recently completed a PBS workforce development programme. Data were analysed using thematic analysis. Results: Three themes were identified in the context of the restrictions: The challenges to maintaining quality of life and PBS of the people being supported and staff attempts to overcome these; the ways in which PBS and behaviour support plans were implemented and the impact on behaviours that challenge; the ways in which PBS principles were applied at organisational levels to help to understand and address staff stress and distress. Conclusions: Overall, the staff identified many unexpected benefits of the restrictions. The results are discussed in the context of the study limitations. [ABSTRACT FROM AUTHOR]

Background: Therapeutic untruths (TU) are used in dementia services to de‐escalate distressing situations. The present authors explored the use of TU by care staff supporting people with an intellectual disability who displayed behaviours that challenged. Method: Data were collected from 126 staff (female = 72.2%; mean age = 41.9 years, SD = 10.7) via an online survey in relation to three areas: responses to three scenarios, reported use of different forms of TU and ratings of perceived effectiveness of, and level of comfort using, each type. Results: 96% of participants reported using TU themselves and observing their colleagues doing likewise. Models that included perceived effectiveness of, and level of staff comfort with using, different TU were significant, although only perceived effectiveness significantly independently contributed to the model. Conclusion: The use of TU was common, with levels consistent with those found in dementia services. The limitations and implications of the findings are discussed. [ABSTRACT FROM AUTHOR]

Background: Positive behavioural support (PBS) has been identified as a means of improving the quality of life and support of people with an intellectual disability. This qualitative study explored the views of service providers about a regional PBS programme, that was underpinned by a workforce development approach. Method: Semi‐structured interviews were conducted with senior staff (n = 42), from organizations which provided services to people with an intellectual disability, about their views about, and perceived impact of, the PBS programme, Data were analysed using thematic analysis. Results: Two themes were identified: "It's what PBS is about, isn't it?" emphasized the importance of the programme being systemic‐ and evidence‐based; "Macro to micro" highlighted the different points in the systems of care at which the programme was seen to impact. Conclusions: We discuss the results in the context of the study limitations. [ABSTRACT FROM AUTHOR]

Accessible summary The provision of care and support for people with learning disabilities and behaviour that challenges in England is mixed., Children and young people with learning disabilities and behaviour that challenges are likely to live within the community, while adults will be in residential care., Overall, supporting people with learning disabilities and behaviour that challenges within the community is likely to be less expensive than supporting them in residential care., Abstract Background: We describe current care arrangements in England for children, young people and adults with learning disabilities and behaviour that challenges, and estimate their comparative costs. Materials and Methods: A two-round Delphi exercise was performed in March and April 2014, followed by a costing exercise. Results: The study finds a mixed picture: participants reported that 60-87% of children, 66-88% of young people and 34-47% of adults were likely to be living within the community. Annual cost of care would range between £39 612 and £74 876 for children, between £35 235 and £52 832 for young people and between £81 478 and £94 799 for adults. Conclusion: While residential-based care may continue to be necessary for respite or for individuals with particular needs, community-based care may be an economically attractive alternative, supporting the inclusion of people with learning disabilities and behaviour that challenges within their communities, potentially at a lower cost. [ABSTRACT FROM AUTHOR]

Background In this study, we explored the extent to which the knowledge and attributions of support staff predicted their reported helping behaviour in relation to people with an intellectual disability who displayed challenging behaviour (CB), and whether emotion regulation style moderated the relationship between attributions and this helping behaviour. Method Participants ( N = 107) completed self-report measures of knowledge of the meaning and management of CB, causal attributions and behavioural response to CB, and emotion regulation style. Results Knowledge and helpful attributions were significantly correlated with reported helping behaviour; however, in a regression analysis with both predictors, only knowledge significantly contributed to the variance. No moderating effect was found for emotion regulation styles on the relationship between attributions and reported helping behaviour. Conclusion Knowledge was the only significant predictor of reported positive staff approaches in managing CB, giving some support for the provision of staff training aimed at increasing knowledge, rather than changing attributions. [ABSTRACT FROM AUTHOR]

Nurses are the main providers of care to older people and to people with dementia in a variety of settings, including acute hospitals. Behaviours that challenge in people with dementia, such as agitation, aggression and 'resistiveness', can best be understood as a form of communication based on a person's perceived and/or actual unmet need(s). This article explores ways of understanding behaviours that challenge and contains a composite case study of 'Frank', a person with severe dementia who has been admitted to an NHS inpatient mental health assessment ward. A three-step approach to investigate, formulate and personalise a range of interventions is shared (clue finding; motive identifying; and formulating, applying and evaluating interventions) together with ways of intervening in behaviours that challenge. [ABSTRACT FROM AUTHOR]

Challenging behaviour displayed by people with intellectual disabilities (ID) can be difficult to manage if caregivers do not understand the reasons for the behaviour. Identifying the contextual variables/triggers for the behaviour is likely to help undertake a functional analysis leading to a person-centred positive behaviour support plan. Currently, a limited number of checklists are available for trigger assessment and none were developed using an interview with the family caregivers. This article describes the development and contents of the comprehensive assessment of triggers for behaviours of concern scale (CATS). CATS was developed in two stages. Stage 1 used a 'bottom-up' approach, in which caregivers of adults with ID who show aggressive behaviour were interviewed to identify the triggers for aggression. In stage two, using a 'top-down' approach, a comprehensive literature review was conducted to gather items from existing trigger checklists. Trigger items from both stages were combined and the duplicates were removed. The final list in CATS consists of 333 contextual triggers categorised under five main domains and 12 subdomains. CATS can be used by caregivers to identify triggers or antecedents of challenging behaviour. Further work is needed to test its psychometric properties, utility, and acceptability.