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This study evaluated two community based interventions for parents of adults with autism spectrum disorder and other developmental disabilities. Parents in the mindfulness group reported significant reductions in psychological distress, while parents in the support and information group did not. Reduced levels of distress in the mindfulness group were maintained at 20 weeks follow-up. Mindfulness scores and mindful parenting scores and related constructs (e.g., self-compassion) did not differ between the two groups. Results suggest the psychological components of the mindfulness based group intervention were effective over and above the non-specific effects of group processes and informal support.

Background Clear evidence of overprescribing of psychotropic medicines to manage behaviours that challenges in people with intellectual disabilities has led to national programmes within the U.K. such as NHS England’s STOMP to address this. The focus of the intervention in our review was deprescribing of psychotropic medicines in children and adults with intellectual disabilities. Mental health symptomatology and quality of life were main outcomes. Methods We reviewed the evidence using databases Medline, Embase, PsycINFO, Web of Science, CINAHL and Open Grey with an initial cut-off date of 22nd August 2020 and an update on 14th March 2022. The first reviewer (DA) extracted data using a bespoke form and appraised study quality using CASP and Murad tools. The second reviewer (CS) independently assessed a random 20% of papers. Results Database searching identified 8675 records with 54 studies included in the final analysis. The narrative synthesis suggests that psychotropic medicines can sometimes be deprescribed. Positive and negative consequences were reported. Positive effects on behaviour, mental and physical health were associated with an interdisciplinary model. Conclusions This is the first systematic review of the effects of deprescribing psychotropic medicines in people with intellectual disabilities which is not limited to antipsychotics. Main risks of bias were underpowered studies, poor recruitment processes, not accounting for other concurrent interventions and short follow up periods. Further research is needed to understand how to address the negative effects of deprescribing interventions. Trial registration The protocol was registered with PROSPERO (registration number CRD42019158079)

An emerging body of international research suggests family caregivers may be a high-risk group for suicide, but the evidence has not been synthesised. Forty-eight peer-reviewed journal articles were included in this review, spanning low-, middle-, and high-income countries and a variety of illnesses and disabilities. The proportion of caregivers experiencing suicidal ideation ranged from 2.7% to 71%, with evidence of suicide attempts, deaths by suicide, and deaths by homicide-suicide also reported. Risk and protective factors varied across studies and there was little consideration of differences by caregiving relationship, type of illness/disability, or country. There is sufficient evidence to warrant concern for caregivers around the world and prompt action in policy and practice, but more rigorous research is required to draw clear, nuanced conclusions about risk and inform evidence-based prevention and intervention.

ObjectivesTo determine whether the onset of physical health problems/sensory impairments is associated with incident challenging behaviours.DesignA retrospective, population-based cohort study using longitudinal data from primary care records. HRs were estimated using Cox proportional hazards models accounting for recurrent events and time-varying exposures.SettingUK primary care data sourced from the Clinical Practice Research Datalink (CPRD) Aurum and Gold databases, covering over 850 000 person-years between 2009 and 2019.Participants166 989 individuals with recorded intellectual disabilities were included in the cohort.Primary outcome measuresIncident identification of challenging behaviours before or after a recorded incident of physical health problems/sensory impairment. Physical health problems/sensory impairments assessed included constipation, epilepsy, pain, visual impairment, hearing impairment, bowel incontinence, urinary incontinence and sleep problems.Results21.21% (n=35 415) of the cohort had challenging behaviour recorded at least once in primary care records over the 11-year study period, equating to an incidence rate of 0.10 per person-year. 40.9% of episodes of challenging behaviour were associated with an incident physical health problem/sensory impairment. All eight physical health problems/sensory impairments were significantly associated with higher HRs for challenging behaviours after full adjustment for demographic and mental health covariates. These associations held across multiple sensitivity analyses. The strongest associations were found for bowel incontinence (HR=2.24; 95% CI 2.01 to 2.50), urinary incontinence (HR=1.93; 95% CI 1.77 to 2.11), constipation (HR=1.89; 95% CI 1.74 to 2.05) and sleep problems (HR=1.74; 95% CI 1.58 to 1.90).ConclusionsThis is the first longitudinal study to establish a temporal association between the onset of physical health problems/sensory impairments and challenging behaviours in people with intellectual disabilities. These findings highlight the need for proactive identification and management of physical health problems/sensory impairments as part of assessment processes to prevent or reduce the impact of challenging behaviours.

Background Reducing bullying is a public health priority. KiVa, a school-based anti-bullying programme, is effective in reducing bullying in Finland and requires rigorous testing in other countries, including the UK. This trial aims to test the effectiveness and cost-effectiveness of KiVa in reducing child reported bullying in UK schools compared to usual practice. The trial is currently on-going. Recruitment commenced in October 2019, however due to COVID-19 pandemic and resulting school closures was re-started in October 2020. Methods Design: Two-arm pragmatic multicentre cluster randomised controlled trial with an embedded process and cost-effectiveness evaluation. Participants: 116 primary schools from four areas; North Wales, West Midlands, South East and South West England. Outcomes will be assessed at student level (ages 7–11 years; n = approximately 13,000 students). Intervention: KiVa is a whole school programme with universal actions that places a strong emphasis on changing bystander behaviour alongside indicated actions that provide consistent strategies for dealing with incidents of bullying. KiVa will be implemented over one academic year. Comparator: Usual practice. Primary outcome: Student-level bullying-victimisation assessed through self-report using the extensively used and validated Olweus Bully/Victim questionnaire at baseline and 12-month follow-up. Secondary outcomes: student-level bullying-perpetration; student mental health and emotional well-being; student level of, and roles in, bullying; school related well-being; school attendance and academic attainment; and teachers’ self-efficacy in dealing with bullying, mental well-being, and burnout. Sample size: 116 schools (58 per arm) with an assumed ICC of 0.02 will provide 90% power to identify a relative reduction of 22% with a 5% significance level. Randomisation: recruited schools will be randomised on 1:1 basis stratified by Key-Stage 2 size and free school meal status. Process evaluation: assess implementation fidelity, identify influences on KiVa implementation, and examine intervention mechanisms. Economic evaluation: Self-reported victimisation, Child Health Utility 9D, Client Service Receipt Inventory, frequency of services used, and intervention costs. The health economic analysis will be conducted from a schools and societal perspective. Discussion This two-arm pragmatic multicentre cluster randomised controlled trial will evaluate the KiVa anti-bullying intervention to generate evidence of the effectiveness, cost-effectiveness and scalability of the programme in the UK. Our integrated process evaluation will assess implementation fidelity, identify influences on KiVa implementation across England and Wales and examine intervention mechanisms. The integrated health economic analysis will be conducted from a schools and societal perspective. Our trial will also provide evidence regarding the programme impact on inequalities by testing whether KiVa is effective across the socio-economic gradient. Trial registration Trials ISRCTN 12300853 Date assigned 11/02/2020.

Background Bullying is a public health risk with rates amongst pupils in mainstream school estimated to be about 20–30%. This increases to approximately 25–69% amongst pupils with special educational needs and disabilities (SEND). Combined bullying data from two large studies of children and young people from 144 countries found that the greatest risk factor to becoming a victim of bullying was being ‘different’ to one’s peers. These differences included factors such as physical appearance, physical disability or learning disability. Yet there are currently no evidence-based anti-bullying programmes designed specifically for pupils in special schools, and therefore no randomised controlled trials. This study adapted KiVa – an established and evidence-based Finnish anti-bullying programme of ten, 1.5 h lessons that can be embedded into a school curriculum – into KiVa-SEND, by adjusting the language, activities and teaching delivery. Methods A two-arm feasibility cluster interventional randomised controlled trial with a 1:1 blocked randomisation allocation ratio of schools and an embedded process evaluation. Data will be collected at baseline and at a 12-month follow-up. Eight UK special education schools will participate with between 128 and 384 pupils and between 16 and 96 teachers completing the data questionnaires. A further three to six teachers and up to 10 pupils will participate in the process evaluation interviews or Talking Mats. Talking Mats is a visual tool to support individuals who struggle with communication, to express their thoughts and emotions. Four schools will be allocated to implement KiVa-SEND across the academic year 2025/26 in addition to anti-bullying practice as usual, and four schools will continue with usual practice alone. Primary outcomes will be feasibility outcomes on the topics of recruitment and retention, adherence, staff surveys, pupil surveys and pupil attendance. Secondary outcomes will focus on pupil survey data, teacher survey data, and the differences between KiVa-SEND and the schools’ current anti-bullying programmes. The process evaluation will focus on the topics of recruitment and retention, implementation and adherence of the adapted KiVa programme, engagement and acceptability of/to pupils and staff, and suitability of the outcome measures. Discussion This feasibility cluster randomised controlled trial with embedded process evaluation will evaluate the feasibility of delivering KiVa-SEND within a variety of UK special schools, the acceptance of the materials, and the suitability of the outcome measures, for pupils aged 7–14 with a range of primary educational needs and learning disabilities. This will inform the feasibility to later conduct a definitive randomised controlled trial of the effectiveness of KiVa-SEND. Trial registration ISRCTN, ISRCTN15516577. Registered 31 March 2025 before any data collection, https://www.isrctn.com/ISRCTN15516577 .

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 It is well documented that mothers of children with intellectual disabilities or autism experience elevated stress, with mental health compromised. However, comparatively little is known about mothers of children with rare genetic syndromes. This study describes mental health and well-being in mothers of children with 13 rare genetic syndromes and contrasts the results with mothers of children with autism. Methods Mothers of children with 13 genetic syndromes ( n  = 646; Angelman, Cornelia de Lange, Down, Fragile-X, Phelan McDermid, Prader-Willi, Rett, Rubenstein Taybi, Smith Magenis, Soto, Tuberous Sclerosis Complex, 1p36 deletion and 8p23 deletion syndromes) and mothers of children with autism ( n  = 66) completed measures of positive mental health, stress and depression. Using Bayesian methodology, the influence of syndrome, child ability, and mother and child age were explored in relation to each outcome. Bayesian Model Averaging was used to explore maternal depression, positive gain and positive affect, and maternal stress was tested using an ordinal probit regression model. Results Different child and mother factors influenced different aspects of mental well-being, and critically, the importance of these factors differed between syndromes. Maternal depression was influenced by child ability in only four syndromes, with the other syndromes reporting elevated or lower levels of maternal depression regardless of child factors. Maternal stress showed a more complex pattern of interaction with child ability, and for some groups, child age. Within positive mental health, mother and child age were more influential than child ability. Some syndromes reported comparable levels of depression (SMS, 1p36, CdLS) and stress (SMS, AS) to mothers of children with autism. Conclusions Bayesian methodology was used in a novel manner to explore factors that explain variability in mental health amongst mothers of children with rare genetic disorders. Significant proportions of mothers of children with specific genetic syndromes experienced levels of depression and stress similar to those reported by mothers of children with autism. Identifying such high-risk mothers allows for potential early intervention and the implementation of support structures.

PurposeThe 1000 Families Study is a large, UK-based, cohort of families of children with intellectual disability (ID). The main use of the cohort data will be to describe and explore correlates of the well-being of families of children with ID, including parents and siblings, using cross-sectional and (eventually) longitudinal analyses. The present cohort profile intends to describe the achieved cohort.ParticipantsOver 1000 families of UK children with ID aged between 4 and 15 years 11 months (total n=1184) have been recruited. The mean age of the cohort was 9.01 years old. The cohort includes more boys (61.8%) than girls (27.0%; missing 11.1%). Parents reported that 45.5% (n=539) of the children have autism. Most respondents were a female primary caregiver (84.9%), and 78.0% were the biological mother of the cohort child with ID. The largest ethnic group for primary caregivers was White British (78.5%), over half were married and living with their partner (53.3%) and 39.3% were educated to degree level.Findings to dateData were collected on family, parental and child well-being, as well as demographic information. Wave 1 data collection took place between November 2015 and January 2017, primarily through online questionnaires. Telephone interviews were also completed by 644 primary caregivers.Future plansWave 2 data collection is ongoing and the research team will continue following up these families in subsequent waves, subject to funding availability. Results will be used to inform policy and practice on family and child well-being in families of children with ID. As this cohort profile aims to describe the cohort, future publications will explore relevant research questions and report key findings related to family well-being.