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People with psychosis often experience social isolation due to stigma. Several volunteering programmes that exist in the community to support patients expect in-person meetings, requiring greater availability and commitment. This study investigated the acceptability and feasibility of remote volunteering over a smartphone for people with psychosis over 12 weeks, exploring its potential impact on both patients and volunteers. A total of 36 participants took part in the study. In the first phase, six participants were recruited in less than three weeks in London. All established contact with their match, and there were no study withdrawals. In the second phase, 30 additional participants were recruited in four weeks, across the United Kingdom. Most patients and volunteers reported that they primarily used audio calls to make contact, followed by text messages, WhatsApp messages and video calls. There were improvements in patients' scores of quality of life, self-esteem, social contacts and symptoms, and in volunteers' ratings of quality of life, physical activity, self-esteem, social comparison, and social distance towards people with mental illness. This study demonstrates that it is feasible, acceptable and safe to remotely connect volunteers and people with psychosis who are afar. Trial registration: ISRCTN17586238 (registration date: 28/09/2018).

Background Success of psychosocial interventions in reducing aggressive challenging behaviour is likely to be related not only to mechanistic aspects but also to therapeutic and system factors. The study aims to examine the facilitators and barriers that influence whether psychosocial interventions for aggressive challenging behaviour in adults with intellectual disabilities lead to positive change. We conducted 42 semi-structured interviews with adults with intellectual disabilities who display aggressive challenging behaviour, family/paid carers, and professionals engaged in or delivering a psychosocial intervention across the UK. Data were analysed thematically using a framework approach. Stakeholders considered therapeutic and supportive relationships and personalised care as facilitating factors in addressing aggressive challenging behaviour. The operational structure of community intellectual disability services and conflicting expectations of professionals and carers were the main contextual barriers that impeded the implementation of psychosocial interventions in adults with intellectual disabilities. Findings highlight the valued components that maximise positive change in adults with intellectual disabilities who display aggressive challenging behaviour. Several operational adjustments including referral criteria, roles of professionals and workforce issues need to be addressed in services to maximise the implementation of psychosocial interventions leading to reduction in aggressive challenging behaviour in this population.

Background: Success of psychosocial interventions in reducing aggressive challenging behaviour is likely to be related not only to mechanistic aspects, but also to therapeutic and system factors. The study aims to examine the facilitators and barriers that influence whether psychosocial interventions for aggressive challenging behaviour in adults with intellectual disabilities lead to positive change. Methods: We conducted 42 semi-structured interviews with adults with intellectual disabilities and aggressive challenging behaviour, family/paid carers, and professionals engaged in or delivering a psychosocial intervention across the UK. Data were analysed thematically using a framework approach. Results: Stakeholders considered therapeutic and supportive relationships and personalised care as facilitating factors of psychosocial interventions to address aggressive challenging behaviour. The operational structure of community intellectual disability services and conflicting expectations of professionals and carers were the main contextual barriers that impeded the implementation of psychosocial interventions addressing aggressive challenging behaviour in adults with intellectual disabilities. Conclusions: Findings highlight the valued components that maximise positive change in adults with intellectual disabilities who display aggressive challenging behaviour. Several operational adjustments including referral criteria, roles of professionals and workforce issues need to be addressed in services to maximise the implementation of psychosocial interventions to reduce aggressive challenging behaviour in adults with intellectual disabilities.

Background Intensive support teams (ISTs) are recommended for individuals with intellectual disabilities who display behaviours that challenge. However, there is currently little evidence about the clinical and cost-effectiveness of IST models operating in England. Aims To investigate the clinical and cost-effectiveness of IST models. Method We carried out a cohort study to evaluate the clinical and cost-effectiveness of two previously identified IST models (independent and enhanced) in England. Adult participants (n = 226) from 21 ISTs (ten independent and 11 enhanced) were enrolled. The primary outcome was change in challenging behaviour between baseline and 9 months as measured by the Aberrant Behaviour Checklist-Community version 2. Results We found no statistically significant differences between models for the primary outcome (adjusted β = 4.27; 95% CI −6.34 to 14.87; P = 0.430) or any secondary outcomes. Quality-adjusted life-years (0.0158; 95% CI: −0.0088 to 0.0508) and costs (£3409.95; 95% CI −£9957.92 to £4039.89) of the two models were comparable. Conclusions The study provides evidence that both models were associated with clinical improvement for similar costs at follow-up. We recommend that the choice of service model should rest with local services. Further research should investigate the critical components of IST care to inform the development of fidelity criteria, and policy makers should consider whether roll out of such teams should be mandated.

Background: People with psychosis are frequently socially isolated. To address this, a new intervention has been developed and tested – the Phone Pal. Methods: Qualitative semi-structured interviews were conducted with patients with psychosis and volunteers to elicit their views and experiences of communicating with their match over the smart-phone. The interviews were audio-recorded, transcribed and analysed through thematic analysis. Findings: In total, 34 participants were allocated to the intervention, matched, and completed the follow-up assessment. Many participants adhered to the advised frequency of communicating with each other at least once per week. Most participants stated that they made audio calls or sent messages to their match; some used video calls but only one patient and their matched volunteer used e-mails to communicate with each other. In their communication, participants commonly spoke about their personal background, daily routine and shared interests. Whilst some participants shared more personal information and felt they spoke about anything with their match, others focused the content of their interactions on superficial information. Some participants described difficulties in communication including being busy or patients not being able to work with the phone. Conclusions: Several patients and volunteers expressed enjoyment in the communication with their match and were pleased with them, being able to develop a positive and friendly relationship.Trial registration: ISRCTN17586238.

ObjectivesApproximately 10% of people with intellectual disability display aggressive challenging behaviour, usually due to unmet needs. There are a variety of interventions available, yet a scarcity of understanding about what mechanisms contribute to successful interventions. We explored how complex interventions for aggressive challenging behaviour work in practice and what works for whom by developing programme theories through contexts-mechanism-outcome configurations.MethodsThis review followed modified rapid realist review methodology and RAMESES-II standards. Eligible papers reported on a range of population groups (intellectual disability, mental health, dementia, young people and adults) and settings (community and inpatient) to broaden the scope and available data for review.ResultsFive databases and grey literature were searched and a total of 59 studies were included. We developed three overarching domains comprising of 11 contexts-mechanism-outcome configurations; 1. Working with the person displaying aggressive challenging behaviour, 2. Relationships and team focused approaches and 3. Sustaining and embedding facilitating factors at team and systems levels. Mechanisms underlying the successful application of interventions included improving understanding, addressing unmet need, developing positive skills, enhancing carer compassion, and boosting staff self-efficacy and motivation.ConclusionThe review emphasises how interventions for aggressive challenging behaviour should be personalised and tailored to suit individual needs. Effective communication and trusting relationships between service users, carers, professionals, and within staff teams is essential to facilitate effective intervention delivery. Carer inclusion and service level buy-in supports the attainment of desired outcomes. Implications for policy, clinical practice and future directions are discussed.Prospero registration numberCRD42020203055.

COVID-19 brought disruptions to children’s education and mental health, and accelerated school de-registration rates. We investigated Elective Home Education (EHE) in families of children with a neurodevelopmental condition. A total of 158 parents of 5–15 year-old children with neurodevelopmental conditions (80% autistic) provided information on reasons for de-registration, their experience of EHE, and children’s mental health. Few differences were found between children participating in EHE before and after the pandemic started. Low satisfaction with school for not meeting children’s additional needs was the main reason for de-registering in both groups. COVID-19 had a more limited role in parents’ decision to de-register. The main advantage of EHE reported in both groups was the provision of personalised education and one-to-one support. Levels of anxiety, internalising and externalising problems were similar between children participating in EHE before and after the pandemic started, and also similar between all children in EHE and school-registered children (N = 1,079).

Background: National policy recommends intensive support teams for all areas of England for adults with intellectual disabilities who display challenging behaviour. However, to the best of our knowledge, there has not been a systematic evaluation of intensive support teams to date. Objectives: Our objectives were to identify and describe the geographical distribution and characteristics of intensive support teams in England; to create a typology of intensive support teams; to investigate clinical and cost outcomes of intensive support team models and factors associated with those outcomes; and to explore professionals’, service users’ and carers’ experiences and describe the wider system context in which they operate. Design: This was a two-phase mixed-methods study. In phase 1, a national survey examined the intensive support team models in operation in England. In phase 2, an observational study of adults with intellectual disabilities investigated the clinical effectiveness and cost-effectiveness of the two intensive support team models. Semistructured interviews with intensive support team managers and professionals, carers, and adults with intellectual disabilities explored their experiences of intensive support team care. In parallel, we examined service-level outcomes related to the function of intensive support teams. Setting: Phase 1 included 80 intensive support teams serving 242 community intellectual disability services in England. Phase 2 included 21 intensive support teams, half of which were in the enhanced intensive support teams model and half of which were in the independent model. Participants: In phase 1, a total of 73 intensive support team managers provided data. In phase 2, a total of 226 participants with intellectual disabilities from 21 intensive support teams (enhanced: teams, n = 11; participants, n = 115; independent: teams, n = 10; participants, n = 111) were enrolled in the study. A total of 42 stakeholders were interviewed. Main outcome measure: The main outcome measure was the Aberrant Behaviour Checklist-Community, version 2, total score. Additional data sources were the carer and self-reported questionnaires, qualitative interviews and focus groups. Results: Two intensive support team models were identified in England – enhanced and independent. Challenging behaviour at 9 months was reduced in both intensive support team models (β 3.08, 95% confidence interval –7.32 to 13.48; p = 0.561), but the observed Aberrant Behaviour Checklist-Community, version 2, score reduction appeared larger in the independent model than in the enhanced model (21% vs. 13%, respectively). No statistically significant differences were found in the secondary outcomes [Psychiatric Assessment Schedule for Adults with Developmental Disabilities Clinical Interview organic condition (odds ratio 1.09, 95% confidence interval 0.39 to 3.02), affective or neurotic disorder (odds ratio 0.91, 95% confidence interval 0.32 to 2.59), or psychotic disorder score (odds ratio 1.08, 95% confidence interval 0.21 to 5.50); risk score (β 1.12, 95% confidence interval –0.44 to 2.68); or quality of life questionnaire score (β –2.63, 95% confidence interval –5.65 to 0.40)]. Similarly, no differences were observed between models in relation to cost-effectiveness (health and social care costs mean difference £3409.95, 95% confidence interval –£9957.92 to £4039.89; societal costs mean difference –£4712.30, 95% confidence interval –£11,124.85 to £2106.36). The experiences of stakeholders did not differ between the intensive support team models, with carers and adults with intellectual disabilities valuing service accessibility, person-centred care and engagement. All stakeholders reported a range of barriers to intensive support team care. Service-level data and the operational policies from intensive support teams showed variation in organisational function and the roles of intensive support teams. The most commonly delivered intervention was positive behaviour support. Conclusions: The study describes the operation of intensive support teams in England and identified two distinct models. We did not find advantages or disadvantages associated with clinical outcomes between models, nor did we find cost differences. On this basis, we recommend that local services decide which model best suits their circumstances. Limitations: This was not a randomised controlled trial. It is possible that confounding factors have not been controlled for as there was no matching between intensive support teams. Last, there was no comparison with usual care. Future work: There is need to develop model fidelity and investigate clinical effectiveness and cost-effectiveness in a randomised controlled evaluation of intensive support teams against treatment as usual. Study registration: This study is registered as ClinicalTrials.gov NCT03586375, Integrated Research Application System (IRAS) 239820 and National Institute for Health and Care Research (NIHR) Central Portfolio Management System (CPMS) 38554. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 33. See the NIHR Journals Library website for further project information.

The COVID-19 outbreak, and associated school restrictions affected the learning experience of students worldwide. The current study focused on the learning experiences of United Kingdom children with neurodevelopmental conditions, including autism and/or intellectual disability. Specifically, the aim was to examine families’ experience with school support for home schooling, families’ resources, and level of satisfaction with schools among families whose children engaged with home schooling, hybrid learning, and school-based learning during the pandemic. An online survey took place in 2021, approximately 1 year since the start of the COVID-19 pandemic in the United Kingdom. Participants were recruited mostly through social media with support via several charities across the United Kingdom. Participants were 809 parents/carers of children with autism and/or intellectual disability aged 5 – 15 years. Of these, 59% were learning from home daily during home schooling, 19% spent some days in school (hybrid learning), and 22% were going to school daily during school restrictions. Parents/carers reported on the support received from schools, the resources accessed, and the resources needed but not accessed to facilitate learning. They also reported on their level of satisfaction with school support and school management of COVID-19 risks. Results indicated that learning during the COVID-19 pandemic was mostly via school-provided worksheets, in the home and hybrid learning group. Families had access to the internet/data and a laptop, computer, or tablet to facilitate learning. However, in both learning groups (i.e., home and hybrid learning) they needed but did not have access to special equipment, special software, and a printer. Importantly, 11% of families in home and hybrid learning groups reported not having access to a desk/table. Satisfaction with school support was low in the home and hybrid learning groups. Satisfaction with COVID-19 management was higher for families of children attending school daily (i.e., the school-based learning group). Future education policy decisions during public health crises should take into consideration the needs of children with neurodevelopmental conditions including autism and/or intellectual disability.

BackgroundRobot-mediated interventions show promise in supporting the development of children on the autism spectrum.ObjectivesIn this systematic review and meta-analysis, we summarize key features of available evidence on robot-interventions for children and young people on the autism spectrum aged up to 18 years old, as well as consider their efficacy for specific domains of learning.Data sourcesPubMed, Scopus, EBSCOhost, Google Scholar, Cochrane Library, ACM Digital Library, and IEEE Xplore. Grey literature was also searched using PsycExtra, OpenGrey, British Library EThOS, and the British Library Catalogue. Databases were searched from inception until April (6th) 2021.Synthesis methodsSearches undertaken across seven databases yielded 2145 articles. Forty studies met our review inclusion criteria of which 17 were randomized control trials. The methodological quality of studies was conducted with the Quality Assessment Tool for Quantitative Studies. A narrative synthesis summarised the findings. A meta-analysis was conducted with 12 RCTs.ResultsMost interventions used humanoid (67%) robotic platforms, were predominantly based in clinics (37%) followed home, schools and laboratory (17% respectively) environments and targeted at improving social and communication skills (77%). Focusing on the most common outcomes, a random effects meta-analysis of RCTs showed that robot-mediated interventions significantly improved social functioning (g = 0.35 [95%CI 0.09 to 0.61; k = 7). By contrast, robots did not improve emotional (g = 0.63 [95%CI -1.43 to 2.69]; k = 2) or motor outcomes (g = -0.10 [95%CI -1.08 to 0.89]; k = 3), but the numbers of trials were very small. Meta-regression revealed that age accounted for almost one-third of the variance in effect sizes, with greater benefits being found in younger children.ConclusionsOverall, our findings support the use of robot-mediated interventions for autistic children and youth, and we propose several recommendations for future research to aid learning and enhance implementation in everyday settings.Prospero registrationOur methods were preregistered in the PROSPERO database (CRD42019148981).

Purpose: The present study investigated school absence among 1,076 5-15 year-old children with neurodevelopmental conditions (intellectual disability and/or autism) approximately one year following the start of COVID-19 in the UK. Methods: Parents completed an online survey indicating whether their child was absent from school during May 2021 and the reason for each absence. Multi-variable regression models investigated child, family and school variables associated with absenteeism and types of absenteeism. Qualitative data were collected on barriers and facilitators of school attendance. Results: During May 2021, 32% of children presented with persistent absence (missing = 10% of school). School refusal and absence due to ill-health were the most frequent types of absence, accounting for 37% and 22% of days missed, respectively. COVID-19 related absence accounted for just 11% of days missed. Child anxiety was associated with overall absenteeism and with days missed because of school refusal. Parent pandemic anxiety and child conduct problems were not associated with school absenteeism. Hyperactivity was associated with lower levels of absenteeism and school refusal but higher levels of school exclusion. A positive parent-teacher relationship was associated with lower levels of absenteeism, school refusal and exclusion. Child unmet need in school was the most frequently reported barrier to attendance while COVID-19 was one of the least frequently reported barriers. Conclusion: COVID-19 had a limited impact on school attendance problems during this period. Findings highlighted the role of child mental health in different types of absence and the likely protective role of a positive parent-teacher relationship.

Introduction Approximately 17% of adults with intellectual disabilities (ID) living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy inpatient stays in England. We have identified two models of ISTs (model 1: enhanced provision and model 2: independent provision). This study aims to investigate the clinical and cost-effectiveness of the two models of ISTs.Methods and analysis A cohort of 226 adults with ID displaying behaviour that challenges who receive support from ISTs from each model will be recruited and assessed at baseline and 9 months later to compare the clinical and cost-effectiveness between models. The primary outcome is reduction in challenging behaviour measured by the Aberrant Behaviour Checklist-Community (ABC-C). The mean difference in change in ABC score between the two IST models will be estimated from a multilevel linear regression model. Secondary outcomes include mental health status, clinical risk, quality of life, health-related quality of life, level of functioning and service use. We will undertake a cost-effectiveness analysis taking both a health and social care and wider societal perspective. Semistructured interviews will be conducted with multiple stakeholders (ie, service users, paid/family carers, IST managers/staff) to investigate the experience of IST care as well as an online survey of referrers to capture their contact with the teams.Ethics and dissemination The study was approved by the London–Bromley Research Ethics Committee (REC reference: 18/LO/0890). Informed consent will be obtained from the person with ID, or a family/nominated consultee for those lacking capacity and from his/her caregivers. The findings of the study will be disseminated to academic audiences, professionals, experts by experience and arm’s-length bodies and policymakers via publications, seminars and digital platforms.Trial registration number ClinicalTrials.gov Registry (NCT03586375).

Resilience in families of autistic children and children with intellectual disability is associated with factors such as family functioning, social support, and financial strain. Little is known about family resilience during the COVID-19 pandemic when many resources were limited. This study examined the association of family resilience with child characteristics, family resources, and socioecological factors during the pandemic. Data collected during the COVID-19 pandemic from 734 United Kingdom parents/caregivers of children who are autistic and/or have intellectual disability were analyzed using path analysis. Greater family resilience was significantly associated with fewer child behavior problems, absence of intellectual disability, higher financial status, and greater family functioning, though not school support. These factors might guide future research and practices to support vulnerable families at risk of low resilience., (©AAIDD.)