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BackgroundChildren with an intellectual disability (ID) are 3-4 times more likely to present with behaviors that challenge and mental health problems than typically developing children. Parenting and the quality of parent-child relationships are risk factors for these families. The COVID-19 pandemic further exacerbated difficulties, leading to an increase in child mental health problems and behaviors that challenge, a deterioration in parental mental health, and further strain on family relationships. Remote family interventions could be an effective solution for both families and specialist mental health services. Video interaction guidance (VIG) has shown promise for improving child mental health. However, it is unclear whether it is widely acceptable to families and feasible to implement across specialist child mental health services. ObjectiveThis randomized controlled trial aims to evaluate the feasibility of delivering VIG as a remote intervention for parents of children aged 6-12 years with ID who have been referred to specialist mental health services. MethodsThe study will be undertaken across 5-7 National Health Service specialist mental health services in England, involving 50 participants randomly allocated on a 1:1 basis to either the intervention group (receiving remote VIG) or the treatment-as-usual (TAU) group. The intervention group will engage in 3-5 cycles of VIG delivered remotely over 12 weeks. The primary feasibility outcomes include the recruitment rate, retention at 6-month follow-up, and VIG cycle completion rate. The secondary outcomes will assess the acceptability of VIG and the feasibility of remote implementation, including fidelity to the intervention protocol. Data will be gathered through online surveys and telephone interviews at baseline, 3 months, and 6 months. Feasibility outcomes will be summarized using descriptive statistics, while thematic analysis will be applied to qualitative data from semistructured interviews with participants, VIG practitioners, and service managers. An embedded process evaluation will explore barriers and facilitators to engagement with VIG, and a parallel health economics evaluation will assess the feasibility of capturing service use data and intervention costs. ResultsThe trial was open to recruitment between December 2022 and March 2024. The first results should be available in 2025. ConclusionsThe study is the first randomized evaluation of VIG as offered to parents of children with ID who have been referred to specialist mental health settings. The outcomes from this feasibility trial will inform the decision to proceed with a definitive trial, using a traffic light system to evaluate recruitment, retention, and VIG completion rates alongside qualitative insights and economic evaluations. Trial RegistrationISRCTN Registry ISRCTN13171328; http://www.isrctn.com/ISRCTN13171328 International Registered Report Identifier (IRRID)DERR1-10.2196/54619

BackgroundPeople with intellectual disability are twice as likely to experience sexual abuse, unintended pregnancies, and sexually transmitted diseases as people in the general population. Despite this, very little is known about how to deliver relationships and sex education effectively to this vulnerable population, how to measure the impact of its delivery in schools, and what stakeholders perceive as important outcomes of this education. ObjectiveTo address these urgent issues, this study aims to develop a stakeholder consensus–based core outcome set of relationships and sex education for use in research and educational settings with students with intellectual disability. MethodsThe study will use a 2-stage mixed methods design. The first stage will involve a systematic review of relationships and sex education outcomes reported in the literature, followed by qualitative exploration with caregivers, teachers and school staff, policy makers, and researchers to investigate their perspectives of meaningful outcomes of this education. Students with intellectual disability will be enabled to take part to express their views on outcomes of importance to them. The second stage will use findings from stage 1 in a 2-round web-based Delphi study with caregivers, teachers and school staff, policy makers, and researchers to develop consensus on proposed outcomes for the evaluation of relationships and sex education with this population. ResultsAs of September 2022, we have completed a systematic review and recruited 56 stakeholders (n=53, 95%, adults and n=3, 5%, students with intellectual disability) for the first stage of the study. We are still recruiting students with intellectual disability. Data analysis has not started yet. Recruitment for the second stage will commence in November 2022. We expect to complete the study by October 2023 and publish the results by the end of 2024. ConclusionsThe development of a core outcome set of relationships and sex education will provide a significant first step to assist the implementation, delivery, evaluation, and sustainability of relationships and sex education for students with intellectual disability. Key audiences will be teachers, researchers, policy makers, and decision makers. Trial RegistrationCore Outcome Measures in Effectiveness Trials 1787; https://www.comet-initiative.org/Studies/Details/1787 International Registered Report Identifier (IRRID)PRR1-10.2196/39921

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).

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.

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.

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.

Abstract Background There is substantial evidence for the efficacy and effectiveness of targeted parenting programmes but much less evidence regarding universal parenting programmes. The aim of the present study was to evaluate the effectiveness of the CANparent Trial of 12 universal parenting programmes, which were made available to parents of all children aged 0–6 years in three local authorities in England. To the best of our knowledge, this is the first study of universal parenting programmes on this scale. Methods Parents accessed a voucher, value £100, to attend an accredited programme of parenting classes. Parents completed measures of their mental well-being, parenting efficacy, parenting satisfaction, and parenting stress, at pre- and post-course. Comparative data were derived from a sample of non-participant parents in 16 local authorities not providing CANparent programmes. A quasi-experimental design was adopted following estimation of propensity scores to balance the two groups on socio-demographic variables. Results Following their programme, changes in parenting stress were small and nonsignificant (Cohen’s d frequency 0.07; intensity, 0.17). Participating parents showed significantly greater improvements than the comparison group for parenting efficacy (0.89) but not parenting satisfaction (−0.01). Mental well-being improved from 0.29 SD below the national norm to the national norm after the course. Parents were overwhelmingly positive about their course (88–94%) but this was lower for improvement in their relationship with their child (74%) and being a better parent (76%). Conclusions The CANparent Trial demonstrated that universal parenting programmes can be effective in improving parents’ sense of parenting efficacy and mental well-being when delivered to the full range of parents in community settings. However, there was no evidence of a reduction in levels of parenting stress; nor was there a significant improvement in satisfaction with being a parent. This is the first study of its kind in the UK; although the results point to a population benefit, more research is needed to determine whether benefits can be maintained in the longer term and whether they will translate into better parenting practices.

This study examined predictors of access to early support amongst families of 0-6-year-old children with suspected or diagnosed developmental disabilities in the United Kingdom. Using survey data from 673 families, multiple regression models were fitted for three outcomes: intervention access, access to early support sources, and unmet need for early support sources. Developmental disability diagnosis and caregiver educational level were associated with intervention access and early support access. Early support access was also associated with child physical health, adaptive skills, caregiver ethnicity, informal support, and statutory statement of special educational needs. Unmet need for early support was associated with economic deprivation, the number of household caregivers, and informal support. Multiple factors influence access to early support. Key implications include enhancing processes for formal identification of need, addressing socioeconomic disparities (e.g., reducing inequalities, increasing funding for services), and providing more accessible services (e.g., coordinating support across services, flexible service provision).

Despite ample evidence of the efficacy and effectiveness of evidence-based parenting programs (EBPPs) within research-led environments, there is very little evidence of maintenance of effectiveness when programs are delivered as part of regular service provision. The present study examined the effectiveness of EBPPs provided during a period of sustained service-led implementation in comparison to research-led effectiveness evaluation. Data from 3706 parents who received EBPPs during sustained implementation by services were compared to data from 1390 parents who had participated in an earlier researcher-led effectiveness trial of a national roll-out of EBPPs in England. In both phases, parents completed measures of child behavior problems, parenting style and parental mental well-being prior to starting parenting programs (pre-test), at the end of the programs (post) and at 12-months follow up. Results from Generalized Estimating Equations controlling for potential covariates indicated significant improvements in child behavior problems during sustained implementation, similar to the effectiveness phase; significant improvements in parenting style which were larger than the effectiveness phase at 12-month follow up; and significant improvements in parental mental well- being. Our findings demonstrate effective maintenance of gains when EBPPs are provided as part of regular provision across a large sample of English parents. Successful long-term implementation should consider effectiveness of EBPPs across the population, given the large contextual changes that take place between researcher-led evaluations and service take-up. Our findings support the integration of EBPPs in public health approaches to addressing child behavior problems and parent well-being.