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Family members are often the main provider of informal support to people with mild intellectual disabilities. In the current study, we explored whether their family-based social capital is prospectively associated with their wellbeing and emotional and behavioral problems. Sixty-nine participants with mild intellectual disabilities and key (proxy reporting) staff members participated in two waves of data collection (T1, T2). Data were collected about family-based social capital (FNM-ID), subjective wellbeing (PWI-ID), and emotional and behavioral problems (ABCL, BPI-01). People who reported less support provision to family members and more reciprocal family support relationships at T1 experienced higher levels of internalizing behavior problems at T2, after accounting for T1 levels of internalizing behavior problems. No other associations were found between earlier family-based social capital dimensions and psychological outcomes at T2. Our study provides initial insights regarding the prospective associations between the family-based social capital of people with mild intellectual disabilities and their wellbeing and emotional and behavioral problems. Future studies should include larger samples to investigate if our preliminary results are replicated. [ABSTRACT FROM AUTHOR]

Background: During the COVID‐19 pandemic in the United Kingdom, many health services were withdrawn from people with learning disabilities, with negative impacts on people's health. What has happened to people's health and healthcare as we move beyond the pandemic? Methods: Access to health services and health status were tracked for 550 UK adults with learning disabilities, using structured online interviews with people with learning disabilities and online surveys with family members or paid carers. Information was provided four times, from Wave 1 (in the winter 2020/2021 'lockdown') to Wave 4 (autumn 2022, over a year after public health protections stopped). Findings: By Wave 4, most people with learning disabilities had had COVID‐19, although high vaccination rates limited the number of people hospitalised. There was little evidence that use of GP services, community nurses, other therapists or annual health checks had increased over time, and at Wave 4 more people were having difficulty getting their medicines. People's health did not substantially improve over time. People with profound and multiple learning disabilities had poorer health and were less likely to be accessing health services. Conclusions: Improvements in access to health services for people with learning disabilities after the pandemic have not yet happened. Accessible Summaries: Many health services stopped for people with learning disabilities in the COVID‐19 pandemic, with a bad impact on people's health. What has happened to people's health and how they use health services through the COVID‐19 pandemic and beyond?People and families told us about the health of over 500 people with learning disabilities living in the United Kingdom four times, from the national lockdown in winter 2020/2021 through to autumn 2022.A lot of people were still not getting the health services they needed after the end of the pandemic, and people's health was not getting better.People with profound and multiple learning disabilities had worse health but were not in contact with health services as much as other people with learning disabilities. [ABSTRACT FROM AUTHOR]

Group Stepping Stones Triple P (GSSTP), is an evidence‐based intervention for parents of children with intellectual disability that aims to improve child behavioural difficulties. GSSTP was designed to be delivered face‐to‐face, but during the COVID‐19 pandemic some services started delivering it remotely. The evidence base for remote intervention is growing, but few studies have focused on the experiences of practitioners delivering the interventions and the consequences of their service provision. We aimed to explore UK practitioners' experiences of delivering remotely GSSTP. The objectives were to identify the advantages and disadvantages of remote GSSTP, to determine whether adjustments were made to enable delivery, and to assess perceived acceptability. Participants were identified using consecutive sampling from the Triple P UK practitioner network. Eleven practitioners, who had experience of delivering GSSTP remotely and face‐to‐face, reported their experiences in an online survey. Ten participants also took part in semi‐structured interviews. Interviews were transcribed verbatim and analysed using thematic analysis. According to 55% of practitioners, parent attendance had increased with remote delivery, and 73% of practitioners found remote GSSTP equally or more effective than face‐to‐face. Survey findings about managing parent engagement remotely were mixed and building rapport with patients was considered equally or more difficult remotely. The key themes from the thematic analysis were the practitioners' 'sincere enthusiasm' over the advantages of the remote GSSTP provision, the 'person‐centered strategies' that characterised their practice, the emergence of 'remote delivery as the way forward' for parenting services and finally, the 'challenges of remote delivery'. Remote GSSTP was perceived to be acceptable to participants and practitioners; the advantages of remote delivery appeared to outweigh the disadvantages. Practitioners reported strategies to prompt engagement and recreate group interactions in the remote setting that could be integrated in the practice of other group parenting providers. [ABSTRACT FROM AUTHOR]

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). [ABSTRACT FROM AUTHOR]

Purpose: Evidence of overprescribing of psychotropic medicines to manage challenging behaviour in people with intellectual disabilities has led to national programmes within the UK to promote deprescribing, such as stopping the overprescribing of medication in people (with learning disabilities, autism or both). To successfully implement deprescribing initiatives, we need to understand how to engage stakeholders in the process. Design/methodology/approach: In a published systematic review, we reported evidence about the process of deprescribing psychotropic medicines for people of all ages with intellectual disabilities and challenging behaviour. As a part of the original review, we searched for evidence about stakeholders' experiences of the psychotropic deprescribing process, which was synthesised and reported within the current study. Findings: Six studies were identified. Involving carers and people with intellectual disabilities, providing ongoing support and improving access to non-pharmacological interventions, including positive behaviour support, may contribute to successful outcomes, including reducing or stopping psychotropic medicines and improving quality of life. Implementing psychotropic deprescribing requires a multidisciplinary collaborative care approach and education for stakeholders. Originality/value: There have been no previous reviews of stakeholder experiences of deprescribing psychotropic medications for people with intellectual disabilities and challenging behaviour. The existing literature is scant, and further research is needed. [ABSTRACT FROM AUTHOR]

The incorporation of mental well‐being provision into school curricula is increasingly the focus of government policy in the UK and internationally. However, it is not clear what well‐being programmes schools provide to pupils, and how these programmes are delivered. The current study was an online survey to assess the use of whole‐school well‐being programmes in primary schools in North Wales. Normalisation Process Theory was utilised as a framework to assess normalisation of the well‐being programmes. One‐hundred and fifty‐one schools in North Wales responded to the survey. The mean number of whole‐school well‐being programmes utilised by schools was 4.59, and nine of the 10 most frequently used programmes had little or no associated evidence base. The well‐being programmes were generally perceived as normalised (i.e. everyday practice) by respondents. Implications for future practice are discussed, including the need to support schools to identify and implement evidence‐based mental well‐being provision. [ABSTRACT FROM AUTHOR]

Early intervention (EI) provision is critical for families who have children with developmental disabilities (DD), but existing evidence suggests accessing EI is not always straightforward. The purpose of this study was to provide a comprehensive description of access to various EI supports (e.g., professionals, services, interventions) for families of young children with suspected or diagnosed DD across the United Kingdom and to investigate perceived ease of access to support, unmet need for support, and barriers and facilitators of access to support. Overall, 673 parental caregivers of children aged 0 to 6 years with suspected or diagnosed DD (e.g., developmental delay, intellectual disability, autism) completed our survey anonymously. Across education, health, and social care, services accessed the most were pediatrics (N = 569, 84.5%), speech and language (N = 567, 84.2%), and general medical practice (N = 530, 78.8%). However, only 18.9% (N = 127) accessed packaged interventions. More than three-quarters (N = 508, 75.5%) reported an unmet need for early support, indicating a mismatch between the availability and capacity of services and demand for support. Parents also reported common barriers (e.g., obstructive services and unhelpful professionals) and facilitators (e.g., supportive and competent professionals, enabling parent factors) of access. Implications for policy, practice, and research are discussed. [ABSTRACT FROM AUTHOR]

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) [ABSTRACT FROM AUTHOR]

Adult siblings are potentially important sources of care, support, advocacy, and friendship for their brothers and sisters with intellectual and developmental disabilities (IDD). Drawing on data about 851 adult siblings who completed an online national survey, we examined predictors and potential key moderators of siblings' mental distress, wellbeing, quality of life, and health outcomes. Moderated regression analyses indicated that siblings experiencing higher levels of subjective poverty; siblings with brothers and sisters with lower levels of independence; and siblings who are carers and also experiencing low levels of subjective poverty, had worse outcomes and may be in need of specific supports. Compared to normative samples, adult siblings of people with IDD had worse outcomes across the measures. [ABSTRACT FROM AUTHOR]

Research on teaching mathematics to children with autism spectrum disorder using parents as mediators is limited. The purpose of the present study was to carry out an initial evaluation of an adapted numeracy programme with three children with autism spectrum disorder from Arabic families in the UK by training and supporting their parents to deliver the intervention over the course of an 8‐week period. The three children's mathematical ability (on a standardised assessment) improved over the course of the intervention. Parents also described positive experiences of their training and of using the curriculum, especially mentioning how much their children had progressed in their understanding of mathematics. The study data show promising results and provide initial evidence that the adapted numeracy programme can be adapted for a home context and for teaching in Arabic. [ABSTRACT FROM AUTHOR]

Research on the experiences of Arab families of children with autism living in non-Arab countries is scarce. A survey investigated the support needs, psychological distress, and parental relationships of Arab parents (n = 100) of children with autism living in the United Kingdom (UK). The survey consisted of five main questionnaires: a demographic questionnaire, the GO4KIDDS Brief Adaptive Scale, the Family Needs Survey, the Strengths and Difficulties Questionnaire, and the Hospital Anxiety and Depression Scale. Descriptive analysis indicated that the most frequently identified support needs were information, community services, and explaining to others. Parents reported high levels of psychological distress, a high level of parental relationship satisfaction with their spouse, and few parental disagreements about their child with autism. Regression analyses showed that increased child behavior problems predicted more total family needs. Higher levels of child prosocial behavior, the better health status of parents, and a larger number of children in the family were associated with lower levels of parental psychological distress. A longer time living in the UK was associated with more parental disagreement over issues related to the child with ASD. Reducing child behavior problems and increasing child prosocial behavior may be important targets for support and intervention to improve outcomes for Arab parents of autistic children. [ABSTRACT FROM AUTHOR]

We tested a novel methodological approach to examine associations between characteristics of autistic children and outcomes for siblings. Cluster analysis was used to define five groups of children with autism (n = 168) based on autism symptoms, adaptive behavior, pro-social behavior, and behavior problems. Primary and secondary parent carers, and siblings themselves, reported on sibling relationship quality and psychological adjustment. Siblings of autistic children with a mild symptom profile, high levels of adaptive skills, but high internalizing and externalizing problems had the highest level of these problems themselves and more conflict in their relationship. Siblings of autistic children with the most complex support needs (adaptive skills deficits, severe autism symptoms) reported lower warmth relationships but not elevated internalizing and externalizing problems. [ABSTRACT FROM AUTHOR]

Objectives Methods Results Conclusions We report the effect of quality of therapy delivery on outcomes in a randomized, controlled trial of behavioural activation (BA) and guided self‐help (GSH) for depression in adults with intellectual disabilities.A study specific measure of quality was used in a linear mixed effect model to determine the effects therapy and therapy quality on therapy outcome.There was a significant interaction between quality and treatment type, with lower quality therapy associated with better outcome for GSH but poorer outcome for BA, with little difference in outcomes at higher levels of therapy quality.Factors suggesting high quality in individualized BA may indicate problematic engagement for GSH. More research into processes in therapy for people with intellectual disabilities is required. [ABSTRACT FROM AUTHOR]

A correction is presented to the article the licensing terms of an open-access article, permitting various uses and adaptations as long as appropriate credit is given to the original authors and source, adhering to the Creative Commons Attribution 4.0 International License.

School non-attendance in autism spectrum disorders has received very little attention to date. The study aimed to provide a comprehensive description of school non-attendance in students with autism spectrum disorders. Through an online survey, parents of 486 children (mean age: 11 years) reported on school attendance over 1 month and reasons for instances of non-attendance. On average, students missed 5 days of school of a possible 23 days. Persistent non-attendance (absent on 10%+ of available sessions) occurred among 43% of students. School non-attendance was associated with child older age, not living in a two-parent household, parental unemployment and, especially, attending a mainstream school. School refusal accounted for 43% of non-attendance. School exclusion and school withdrawal each accounted for 9% of absences. Truancy was almost non-existent. Non-problematic absenteeism (mostly related to medical appointments and illness) accounted for 32% of absences. Non-problematic absenteeism was more likely among those with intellectual disability, school refusal was more likely among older students and school exclusion was more likely among students from single-parent, unemployed and well-educated households. Findings suggest that school non-attendance in autism spectrum disorders is a significant issue, and that it is important to capture detail about attendance patterns and reasons for school non-attendance. Our study aimed to describe school non-attendance in students with autism. We conducted an online survey. Parents of 486 students (mean age: 11 years) indicated which days their child had missed school (over a period of 1 month). If the child had missed a day, the parent was asked to select a reason from a list of 15 possible reasons (this is a measure of types of school non-attendance called SNACK (School Non-Attendance ChecKlist; Heyne et al., 2019)). On average, students missed 5 days of school of a possible 23 days. Missing over 10% of school is known as persistent absence, and in our study, 43% of students experienced persistent absence. Older students, who attended mainstream schools, who did not live in a two-parent household and whose caregiver was unemployed were more likely to miss school. Looking at the reasons for absence, school refusal was the most frequent reason, accounting for 43% of absences. Nine percent of absence was due to school exclusion. Nine percent of absence was due to school withdrawal. Truancy was almost non-existent. A final reason describes non-problematic absence that is mostly due to medical appointments and illness. This type of absence accounted for 32% of absences in our study, and it was more likely in student with intellectual disability. School refusal was more likely among older students. School exclusion was more likely among students from single-parent, unemployed and well-educated households. Findings from this study help us to understand better the difficulties students with autism experience attending school. [ABSTRACT FROM AUTHOR]

Background: The Who's Challenging Who? (WCW) training is coproduced and delivered by people with intellectual disabilities (IDs), and it aims to improve staff empathy for people with challenging behaviour (CB). This study qualitatively describes trainees' and trainers' experiences of the WCW.Methods: Semi-structured interviews were undertaken with managers (n = 7), support staff (n = 6) and the WCW trainers (n = 4; three had IDs). Interviews were transcribed verbatim and analysed using thematic analysis.Results: Two cross-cutting themes were drawn from the data: (1) valued roles of the trainers, whereby trainers and trainees benefited from the training being coproduced and delivered by people with IDs, and (2) beyond the training, within which trainees reported that they were engaging in increased reflection about their past and current practice.Conclusions: Being trained by people with IDs and CB appears to be a useful method, which can lead to perspective taking and reflection about supporting people with IDs and CB. [ABSTRACT FROM AUTHOR]

A family developmental framework was applied to data from families of children with intellectual disabilities to understand the role of parenting in the path from early adversity to problem behaviors in mid-childhood. Data from 9 months to 11 years tested the Family Stress Model in families of 555 children. Adversarial parenting between 3 and 5 years mediated the path from early adversity (family poverty and maternal psychological distress at nine months) to problem behaviors at 7 and 11 years. Positive parent-child relationship only mediated the path to conduct problems. Multiple mediation was not present. Early adversity impacts both positive parent-child relationship and adversarial parenting between three and five, but the latter is crucial for problem behaviors in mid-childhood. [ABSTRACT FROM AUTHOR]

Previous research is not conclusive in detailing the prevalence of challenging behaviour and its correlates in children with intellectual disabilities in school settings in particular. In the current study, an amended version of the Behaviour Problems Inventory – Short Form was used to collect data from a sample of 321 students in a special school. Prevalence of challenging behaviour was high with 53% of students having at least one challenging behaviour, 36.4% self-injurious behaviour, 30.2% aggressive/destructive behaviour, and 25.9% stereotyped behaviour. Challenging behaviour overall was significantly associated with poorer adaptive behaviour skills and the presence of an autism diagnosis. Stereotyped behaviour was also significantly associated with higher levels of neighbourhood deprivation and age. The implications of these findings for schools and future research are discussed. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to outline the development, piloting and evaluation of the Who's Challenging Who? (WCW) training intervention for social care staff to improve their empathy and attitudes towards people with learning disabilities (LD) and challenging behaviour (CB). Design/methodology/approach: A phased approach was taken to the development and testing of the intervention. Initially, the existing literature was reviewed, the theoretical background of the intervention was developed, and then the intervention was designed. A pilot study was undertaken, followed by further development, and a large-scale randomised controlled trial (RCT). Findings: WCW had a small positive effect on staff empathy 20 weeks after the intervention, and small to moderate effects for other staff reported outcomes (e.g. positive empowerment attitudes and positive work motivation). Being trained by people with LD and CB encouraged staff to reflect on the impact they have on the people they support. The trainers with LD valued their role, and saw benefits beyond this (e.g. friendships). Research limitations/implications: It is possible to carry out high-quality RCT evaluations of social care practice, and research should continue to generate evidence in this way, as in healthcare settings. However, there were difficulties in retaining participants. Practical implications: People with LD can be actively involved in the co-production and delivery of social care training. Social implications: Employment and a fair wage can increase the confidence and empowerment of people with LD. Originality/value: This is the first large-scale RCT of an intervention that aimed to improve empathy/change attitudes in social care staff who work with people with LD and CB. [ABSTRACT FROM AUTHOR]

This is the first study on the behavioral and emotional adjustment of siblings of children with intellectual disabilities (ID) to use a population-based sample, from the third wave of the Millennium Cohort Study (MCS); a UK longitudinal birth cohort study. We examined differences between nearest-in-age older siblings (age 5-15) of MCS children (likely mainly with mild to moderate ID) identified with ID (n = 257 siblings) or not (n = 7246 siblings). The Strengths and Difficulties Questionnaire (SDQ) measured all children's adjustment. For SDQ total problems, 13.9% of siblings of children with ID and 8.9% of siblings of children without had elevated scores (OR 1.65; 95% CI 1.04, 2.62; p = 0.031). Similar group differences were found for SDQ peer and conduct problems. In logistic regression models, variables consistently associated with older sibling adjustment were: adjustment of the MCS cohort child, older sibling being male, family socio-economic position, primary carer psychological distress, and being from a single parent household. The ID grouping variable was no longer associated with adjustment for all SDQ domains, except siblings of children with ID were less likely to be identified as hyperactive (OR 0.30; 95% CI 0.10, 0.87; p = 0.027). Some older siblings of children with ID may be at additional risk for behavioral and emotional problems. Group differences were related mainly to social and family contextual factors. Future longitudinal research should address developmental pathways by which children with ID may affect sibling adjustment. [ABSTRACT FROM AUTHOR]

Background: Almost no research has been published reporting on evaluations of the effectiveness of psychological interventions for people with severe to profound intellectual disabilities and depression. This paper describes the development and initial feasibility testing of an adapted Behavioural Activation therapy (BeatIt2) for this population. Method: Phase 1 of the study examined participant recruitment and willingness to be randomised in the context of a planned Randomised Controlled Trial (RCT). Phase 2 examined the feasibility of delivering the intervention. Results: Twenty adults with a severe or profound intellectual disability and clinically significant depression were recruited to Phase 1 of the study. In Phase 2, there was 100% participant retention for those recruited to the study at 6‐month follow‐up. The BeatIt2 therapy was reported to be acceptable for participants. Conclusion: COVID disruption meant that it was not possible to complete the planned feasibility RCT. The positive findings suggest that additional evaluation of BeatIt2 is warranted. [ABSTRACT FROM AUTHOR]

Background: People with severe to profound intellectual disabilities experience similar or higher levels of depression than those with more mild intellectual disabilities. Yet, there is an absence of evidence about how to adapt existing psychological therapies for this population. Method: A behavioural activation intervention (BeatIt) for people with mild to moderate intellectual disabilities was adapted for people with severe to profound intellectual disabilities and depression. Key considerations include: (i) beginning with a more in‐depth assessment process; (ii) including the person in session activities and developing a relationship with them; (iii) formulation and the use of film to document the link between activity and mood; and (iv) addressing barriers to change at an individual and inter‐personal level and considering how the carer could support the person's engagement in activity. Results: Successfully adapting BeatIt represents a first step towards gathering evidence about the effectiveness of behavioural activation for people with severe to profound intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background: Previous research has demonstrated an association between aggressive challenging behaviour (CB) and reductions in work-related well-being for intellectual disability (ID) support staff. Much of this research has used subjective measures of CB.Aims: To examine whether exposure to aggressive CB is associated with reduced work-related well-being in staff working in ID residential settings across the UK.Methods and Procedure: A cross-sectional analysis was undertaken as part of a randomised trial; 186 staff from 100 settings completed questionnaires on their CB self-efficacy, empathy, positive work motivation, and burnout. Objective measures of aggressive CB in the preceding 16 weeks were collected from each setting.Outcomes and Results: There was little association between staff exposure to aggressive CB and work-related well-being. Clustering effects were found for emotional exhaustion and positive work motivation, suggesting these variables are more likely to be influenced by the environment in which staff work.Conclusions and Implications: The level of clustering may be key to understanding how to support staff working in ID residential settings, and should be explored further. Longitudinal data, and studies including a comparison of staff working in ID services without aggressive CB exposure are needed to fully understand any association between aggressive CB and staff well-being. [ABSTRACT FROM AUTHOR]

Background Behaviour support plans (BSPs) are at the core of positive behavioural support for challenging behaviour, but nonadherence to BSPs is common. Generally, nonfluent component knowledge prevents learners achieving fluent application and retention of information, and we hypothesised that this may apply to staff learning BSPs.Method We compared the effectiveness of fluency training (FT) and precision teaching on staff learning of BSPs with staff receiving consultation as usual, comprising standard support for learning BSPs. All staff completed pre- and postintervention tests measuring frequency of component skill recall and application of component knowledge (composite skills).Results The FT group made and maintained greater gains in component skill recall and achieved higher composite test scores, suggesting greater application of component skills. These effects were associated with moderate effect sizes.Conclusions This study offers initial support for the application of FT and precision teaching for staff learning BSP content. [ABSTRACT FROM AUTHOR]

Background: Parenting an individual with intellectual and developmental disabilities (IDD) can be challenging, particularly during adulthood. It is important to better understand ways of supporting families as individuals with IDD age. Self‐compassion is a potential internal coping resource for parents, and is strongly linked to positive mental health outcomes, though research has yet to examine it in parents of adults with IDD. Method: The current study examines the association between self‐compassion and measures of well‐being for 56 parents of adults with IDD. Results: Greater self‐compassion was related to lower levels of stress and depression, even after accounting for other known stressors, such as economic disadvantage, having a child with an Autism Spectrum Disorder diagnosis, and high parent burden. Conclusions: Self‐compassion may offer resiliency against these parenting challenges. [ABSTRACT FROM AUTHOR]

Introduction: Current research findings in the field of intellectual disabilities (ID) regarding the relationship between mental health problems and challenging behavior are inconclusive and/or contradictory. The aim of this study was to further investigate the putative association between these two highly prevalent phenomena in people with ID, and specifically to explore the hypothesis that challenging behaviors may be behavioral equivalents of mental health problems. Methods: A sample of 160 adults accessing secondary care ID health services was assessed using five validated measures. These included ratings of severity of disability, mental health problems, autism behaviors, physical health problems, and four different aspects of challenging behavior. In conjunction with demographic information, four multiple regression analyses were undertaken to examine the interaction between mental health problems (moderated by severity of disability) and ratings of overall challenging behavior, aggression, self-injurious behavior, and stereotypy. In each case, age, gender, autism, and physical health problems were included as covariates. Results: There was a statistically significant association between mental health problems and ratings of overall challenging behavior, as well as the moderating effect of severity of disability. Importantly, the positive association between mental health problems and challenging behavior was only significant at more severe levels of disability. Conclusions: These findings support the “behavioral equivalents” hypothesis for mental health problems and challenging behaviors. However, further longitudinal research is required before this hypothesis can be considered unequivocally supported. [ABSTRACT FROM AUTHOR]

Traditionally, cluster randomized controlled trials are analyzed with the average intervention effect of interest. However, in populations that contain higher degrees of heterogeneity or variation may differ across different values of a covariate, which may not be optimal. Within education and social science contexts, exploring the variation in magnitude of treatment effect at different points in the population can indicate where the intervention is most effective rather than assuming an average effect. Data from [Owen, K.L., et al., 2021. Implementation support improves outcomes of a fluency-based mathematics strategy: A cluster-randomized controlled trial. Journal of research on educational effectiveness, 14 (3), 523–542.] were reanalyzed using three modeling approaches: conditional mean-modeling reporting the average treatment effect using linear mixed models, and two quantile regression-based methods. Quantile regressions report the quantile treatment effects at different percentiles: 10th, 25th, 50th, 75th and 90th. For the Quantile approaches, a significant intervention effect in the median to upper quantiles was found and linear quantile mixed model showed improved fit over the other approaches. An improved picture of intervention effects may be apparent using quantile regression methods when analyzing cluster randomized trials that have heterogeneous error variance. In particular, the linear quantile mixed model shows improved model fit allowing a multilevel framework to include random effects. There is considerable scope to extend this framework to incorporate more complex RCT designs. [ABSTRACT FROM AUTHOR]

Research into factors underlying the dissemination of evidence-based practice is limited within the field of Applied Behaviour Analysis (ABA). This is pertinent, particularly in the UK where national policies and guidelines do not reflect the emerging ABA evidence base, or policies and practices elsewhere. Theories of evidence-based practice in education and policy suggest that decision makers’ ‘perceptions’ of evidence are significant factors in dissemination. For professionals, scientific evidence is often critical. For others, including parents, experiential and anecdotal evidence can be as important. Within autism education, parents are often, and not necessarily by choice, key decision makers. This study is the first to try to identify and quantify UK parents’ beliefs about ABA in the education and support of children with autism. We developed and tested, using an internet survey method, the Parental Beliefs about ABA and Autism scale (P-BAA). Current and/or past use by parents of any behaviorally based approach including ABA was a significant predictor of P-BAA scores as were parent education, household income and child diagnosis: experience of a behaviorally based approach, higher levels of education and income and children at the more ‘severe’ end of the autism spectrum were associated with more positive beliefs about ABA. [ABSTRACT FROM PUBLISHER]

Background: Findings suggest approximately one in six people with intellectual disability engage in 'challenging behaviours', which include aggression towards others/property and self-injurious actions. In residential settings, actions of staff members can make challenging behaviours more likely to occur, or make these behaviours worse. In particular, negative attitudes from members of staff and lack of understanding about the reasons for challenging behaviour are contributory factors. 'Who's Challenging Who?' (WCW) training is designed to emphasise the role of staff in residential settings as a challenge also to people with intellectual disability. The course is delivered jointly by a trainer with intellectual disability who has been labelled as having challenging behaviour, along with a trainer without intellectual disability.Methods: This is a cluster randomised two-arm trial of WCW training versus a waiting list control. Overall, 118 residential settings will be recruited and randomised on a 1:1 ratio. Within each setting, two members of staff will be invited to take part in the trial. Participants will complete assessments at baseline and at 6 and 20 weeks. WCW is a half day initial training course with some follow-on coaching to ensure implementation. The primary outcome is changes in staff empathy towards people with challenging behaviour. Secondary outcomes at the staff level include confidence, attitudes and work-related well-being. Secondary outcomes at the residential setting level include recorded incidents of aggressive challenging behaviour, and use of any restrictive practices.Discussion: If the results of the cluster randomised trial are positive, we will disseminate the findings widely and make all training manuals and materials freely available for anyone in intellectual disability services (and beyond) to use. Our training approach may have wider implications in other areas of social care. It may also provide a generally applicable model for how to train people with intellectual disability to act as co-trainers in intellectual disability social care settings. People with intellectual disability and challenging behaviour have already been involved centrally with the design, development and pilot evaluation of WCW and will also be fully involved throughout this trial.Trial Registration: Registered on the International Standard Randomised Controlled Trial Number registry on 8th December 2015: ISRCTN53763600 . [ABSTRACT FROM AUTHOR]

Purpose: There is an emerging research literature on the experiences of family members of girls and women with Rett syndrome (RTT), but a lack of longitudinal data.Methods: Fifty mothers whose daughters had RTT were surveyed 16–17 months after an earlier cross-sectional study. Measures completed at both time points focused on maternal positive and negative psychological well-being and their daughters’ behavioral and emotional problems and RTT behavioral phenotype severity.Results: Maternal stress, anxiety, and depression demonstrated at least moderate levels of stability. Maternal positive perceptions were also moderately stable over 16–17 months. Longitudinal analyses suggested that their daughters’ behavioral and emotional problems rather than RTT behavioral phenotype severity predicted later maternal well-being.Conclusion: Mothers with RTT daughters experience chronic stress (persisting over time) but also ongoing positive perceptions. Practitioners should recognize positive perceptions and also consider targeted behavioral parent training to reduce behavior problems in individuals with RTT. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability ( N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors. [ABSTRACT FROM AUTHOR]

Background The perceptions of individuals with Down syndrome are conspicuously absent in discussions about the use of prenatal testing. Method Eight individuals with Down syndrome were interviewed about their views and experience of the topic of prenatal testing. Results Interpretative phenomenological analysis revealed two major themes with subthemes: (1) a devalued condition and a valued life and (2) a question of 'want?' Foucauldian discourse analysis highlighted two main discursive practices: (i) social deviance and (ii) tragedy and catastrophe of the birth of a baby with Down syndrome. Conclusions The findings suggest that individuals with intellectual disabilities can make a valuable contribution to discussions surrounding the use of prenatal testing. Implications for clinical practice include the use of information about Down syndrome given to prospective parents, and the possible psychological impact of prenatal testing practices on individuals with Down syndrome. [ABSTRACT FROM AUTHOR]

Relationship quality between a parent and a child typically differs between families with a child with intellectual disability (ID) and families with other children. Parent-child relationship quality matters in ID as it has been linked with child outcomes. However, there are few research studies examining factors that are related to parent-child relationship quality in ID. The aim of the present study was to investigate factors associated with parent-child relationship quality in families of children with ID. In particular, we aimed to examine the association between the amount of time parents and children spend together in leisure activities and parent-child relationship quality. The sample was drawn from the 1000 Families Study, a survey including parent-reported data from families of children with ID aged 4–16 years. Measures of parent-child relationship quality and shared parent-child time were available. Regression analyses showed that parental investment in shared leisure time was significantly associated with parent-child closeness and conflict, even after controlling for a number of factors related to relationship quality. Parental psychological distress was also associated with parent-child relationship quality. Interventions that aim to improve parent-child relationship quality may want to investigate the role of shared parent-child time in leisure activities as one of the mechanisms of change. • Parent-child relationship quality in intellectual disability has been associated with child mental health. • It is important to identify factors associated with parent-child relationship quality in these families. • Shared time in leisure activities was significantly associated with parent-child closeness and conflict. • Spending time in joint leisure activities may be a path for improving closeness and reducing conflict in parent-child relationships. [ABSTRACT FROM AUTHOR]

Genetic analysis of development and function of the gonadotrope cell lineage within mouse anterior pituitary has been greatly facilitated by at least three currently available Cre strains in which Cre was either knocked into the Gnrhr locus or expressed as a transgene from Cga and Lhb promoters. However, in each case there are some limitations including CRE expression in thyrotropes within pituitary or ectopic expression outside of pituitary, for example in some populations of neurons or gonads. Hence, these Cre strains often pose problems with regard to undesirable deletion of alleles in non-gonadotrope cells, fertility and germline transmission of mutant alleles. Here, we describe generation and characterization of a new Fshb- i Cre deleter strain using 4.7 kb of ovine Fshb promoter regulatory sequences driving i Cre expression exclusively in the gonadotrope lineage within anterior pituitary. Fshb- i Cre mice develop normally, display no ectopic CRE expression in gonads and are fertile. When crossed onto a loxP recombination-mediated red to green color switch reporter mouse genetic background, in vivo CRE recombinase activity is detectable in gonadotropes at more than 95% efficiency and the GFP-tagged gonadotropes readily purified by fluorescence activated cell sorting. We demonstrate the applicability of this Fshb- i Cre deleter strain in a mouse model in which Dicer is efficiently and selectively deleted in gonadotropes. We further show that loss of DICER-dependent miRNAs in gonadotropes leads to profound suppression of gonadotropins resulting in male and female infertility. Thus, Fshb- i Cre mice serve as a new genetic tool to efficiently manipulate gonadotrope-specific gene expression in vivo . [ABSTRACT FROM AUTHOR]

Background: Recent research suggests that having a brother or sister with autism may contribute to increased positive or negative emotional or psychological impact on siblings.Aims: To use a novel multidimensional data analysis method to further understand outcomes for siblings of autistic children.Methods and Procedures: 318 siblings of children with a recorded autism diagnosis and an intellectual disability were included for latent profile analysis. Five variables (DBC disruptive and anxiety; VABS II communication, daily living, and socialization skills) were used to identify sub-groups of autistic children. Primary carers reported on sibling relationship quality (items from the Sibling Relationship Questionnaire warmth/closeness and conflict scales), and siblings' behavioral and emotional problems.Outcomes and Results: The profile groups differed in their levels of ID coupled with disruptive behavior, emotional problems and adaptive skills. Profiles included a severe ID, low behavior and emotional problems and low adaptive skills group; a group with mild ID coupled with high adaptive skills and low emotional and behavioral problems; and a mild ID group with high emotional and behavioral problems. Conflict in the sibling relationship differed across the profile groups (F (4304) = 15.13, p < .001).Conclusions and Implications: Siblings of autistic children with the highest support needs were reported to have the lowest conflict in their relationships. Conversely, siblings of the autistic children with the highest levels of externalizing behaviors and anxiety were reported to have the highest levels of conflict in the sibling relationship. [ABSTRACT FROM AUTHOR]

Few published studies have reported on the psychological well-being of family members of individuals with Rett syndrome (RTT). Eighty-seven mothers of girls and women with RTT completed a questionnaire survey about their daughters' behavioral phenotype, current health, and behavior problems, and their own and a sibling's well-being. Mothers reported increased anxiety but similar levels of depression when compared to a normative sample. Across all problem domains on the Strengths and Difficulties Questionnaire, child and adolescent siblings (n = 39) were reported by mothers to have fewer difficulties than a normative sample. The severity of their daughters' RTT behavioral phenotype predicted increased anxiety and stress for mothers. Increased RTT daughters' current health problems predicted more maternal perceptions of positive gain. [ABSTRACT FROM AUTHOR]

Although researchers have explored siblings' perspectives on their relationships with a brother or sister with autism, there is a lack of research on the perspective of the child with an ASD. We conducted semi-structured interviews with 12 adolescents with an ASD. Interpretative Phenomenological Analysis was used to analyse the data. Two major themes emerged from the analytic process: 1. Adolescents' reports of seemingly typical sibling interactions, and 2. A typical sibling interactions influenced by having an ASD. Despite the social context reinforcing views that autism impacts the sibling relationship in an atypical way, the overwhelming sense from participants was of typical sibling relationships. The assumption of atypical relationships in families of children with autism may need to be re-evaluated. [ABSTRACT FROM AUTHOR]

Research investigating structured, comprehensive numeracy curricula appropriate for children with Intellectual Disabilities (ID) is limited. We conducted a pilot study focused on an adaptation of the Maths Recovery program. Twenty four elementary school children with severe ID or autism were randomly allocated into the intervention and control groups. For 12 weeks, children in the intervention group received individualized numeracy teaching based on the adapted Maths Recovery curriculum, whereas children in the control group received 'mathematics as usual' teaching. Pre- and post- intervention tests on standardized numeracy measures were conducted. Children were successfully recruited into the study, parents were willing for their child to be randomised to one of the arms of the study, and the vast majority of children were retained to follow-up. Analysis of data from outcome measures indicated that the Maths Recovery group made improvements at post-intervention in comparison to the control group. A follow-up test showed that gains were maintained 7 months after the end of the intervention. These pilot results support the case for a definitive research trial of the adapted Maths Recovery intervention. [ABSTRACT FROM AUTHOR]

Research on staff supporting individuals with intellectual and developmental disabilities (IDD) tends to focus on negative aspects of the work. This study expanded on previous research on the positive consequences that work in the IDD field has on staff using a brief version of the Staff Positive Contributions Questionnaire with 926 staff. Factor analysis suggested two factors: General positive contributions and Positive work motivation. Positive work motivation was associated with high levels of personal accomplishment, but shared limited variance with the other two burnout dimensions (emotional exhaustion, depersonalization). Findings lend support to the idea that we need to consider both positive and negative aspects of work life. This brief scale may be a useful index of how staff benefit from their work. [ABSTRACT FROM AUTHOR]

Debate is ongoing about whether typically developing siblings of children with autism spectrum disorder (ASD) are at greater risk of behavioral or emotional problems than siblings of children without ASD. Most data on behavior is provided by mothers, and we do not know whether fathers' reports differ. The strengths and difficulties questionnaire (Goodman in J Child Psychol Psychiatry 38(5):581-586, ) was completed by 168 mothers and 130 fathers. Parents were more likely to rate siblings as having 'abnormal' behavior when compared to a normative population. We found moderate correlations between mother-father ratings. More research may be needed to understand any clinical benefits of gathering data about sibling adjustment from more than one parent in the family. Implications for clinical practice and future research are discussed. [ABSTRACT FROM AUTHOR]

Background The field of forensic intellectual disabilities has been developing rapidly over the last 15 years. Much of the work has been built on research in mainstream criminality but more recently studies have emerged that reveal issues specific to offenders with intellectual disability. Method Research on pathways into offending is reviewed with reference to its relevance to the field of intellectual disability. We also summarize some findings on pathways into and through services for offenders with intellectual disability. Findings Studies reveal that developmental adversity is an important risk variable. Previous and recent aggression are potent risk factors. New evidence suggests that immediate, proximal risk factors may be more important in this client group. The studies in this issue add to the knowledge on pathways into offending, important areas for assessment and effective treatments as well as advancing knowledge in the academic literature on general criminality. [ABSTRACT FROM AUTHOR]

Background: The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children's palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. Methods: Drawing on contemporaneous research on producing evidence-based children's health information, we collaborated with leading children's not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. Results: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. Conclusion: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning. [ABSTRACT FROM AUTHOR]

Background There is a dearth of research on the perspectives of adolescent siblings growing up with a brother or sister with an autism spectrum disorder (ASD). Method Semistructured interviews were used to elicit the perceptions and experiences of 12 typically developing adolescents with a brother with an ASD. Interpretative phenomenological analysis was used. Results The data analysis of the siblings' perceptions yielded 6 themes: (a) difficulties and negative impact of their brother's condition on themselves and their family, (b) how others' reactions to their brother negatively affected them as siblings, (c) how their histories with their brothers contextualised their present circumstances, (d) the varying degrees of acceptance and tolerance towards their brothers, (e) positive perceptions and experiences with their brothers, and (f) their thoughts and worries about the future. Conclusions The main implications are for supports to adolescent siblings by helping them to develop skills in managing others' reactions and openly discussing concerns about their brother's future. [ABSTRACT FROM AUTHOR]

The authors report 1-year outcomes for 11 children (3-7 years) with autism who attended an “Applied Behavior Analysis (ABA) classroom” educational intervention in a mainstream school setting. The children learned new skills by the end of 1 year and learned additional skills during a 2nd year. Group analysis of standardized test outcomes (IQ and adaptive behavior) showed moderate to large effect size changes over 1 year, with further changes during a 2nd year. Standardized test outcomes for nine children after 2 years were also analyzed against a comparison group (n = 18) of children with autism receiving “education as usual.” These controlled comparisons were associated with statistically significant large effects in favor of the ABA group for adaptive skills. Exploratory analysis also showed that increases in language and learning skills in the ABA class group were generally associated with positive changes in standardized test scores. A comprehensive behavioral intervention model can be successfully implemented in a mainstream school setting. [ABSTRACT FROM AUTHOR]

Background Although interventions for children with pervasive developmental disorders (PDD) have been the focus of research effort and evidence reviews in many Western countries, this evidence has not been assessed in the context of low- and middle-income (LAMI) countries especially in terms of the fit with different cultures and resources. Method As a part of the WHO MH-GAP project, we carried out a systematic review of published literature relating to interventions for PDD in LAMI countries. Given the small amount of direct evidence found, we supplemented the review with findings from existing relevant evidence reviews to draw practical recommendations. Results We found only four controlled studies evaluating an intervention for children with PDD in a LAMI country. These studies all evaluated different interventions. A systematic search of controlled studies of evidence-based parenting training interventions (Incredible Years and Triple P) in non-LAMI countries identified two studies both indicating successful outcomes. Conclusions The evidence base for interventions for PDDs in LAMI countries is sparse, and to inform practical and future research recommendations, it is important to consider potentially deliverable behavioural parent training interventions. Such interventions need to be explored in LAMI countries when delivered in primary and secondary healthcare contexts. [ABSTRACT FROM AUTHOR]

We evaluated outcomes for 31 children with autism (2-6 years of age at intake) who received behavioral intervention in mainstream pre-school settings and a comparison group of 12 children receiving treatment as usual. After 2 years, children receiving behavioral intervention had higher IQ scores (Hedges g = 1.03 (95% CI = .34, 1.72) and adaptive behavior composite scores (Hedges g = .73 (95% CI = .05, 1.36). Despite probably fewer intervention hours, these group level outcomes were comparable to studies providing more intensive intervention. Individual child data also showed positive results with 19.4% achieving change at a reliable level for IQ; but a lower percentage than found in recent meta-analysis research. Strengths and weaknesses of the mainstream pre-school delivery model are discussed. [ABSTRACT FROM AUTHOR]

We examined child behavior problems and maternal mental health in a British population-representative sample of 5 year-old children with an autism spectrum disorder (ASD), controlling for the presence of an intellectual disability (ID). Behavior problems were significantly higher in children with ASD with/out ID compared to typically developing children, but compared to children with ID only hyperactivity was significantly higher in children with ASD/ID. After controlling for ID and maternal mental health, the presence of ASD significantly increased the odds for hyperactivity, conduct problems and emotional symptoms. Negative maternal outcomes (serious mental illness, psychological distress, and physical health limitations) were not consistently elevated in ASD. The findings highlight the early age at which behavior problems emerge in ASD, and suggest that at this age , there may not be a clear disadvantage for maternal mental health associated with having a child with ASD in the family, over and above that conferred by child behavior problems. [ABSTRACT FROM AUTHOR]

Background Several studies have reported relationships between life events and psychological problems in people with intellectual disabilities. In contrast to the general literature, data have consistently been collected via proxy informants and putative moderator variables such as social support have not been examined. Materials and Methods Thirty-eight adults with intellectual disabilities completed three psychological measures in a semi-structured interview setting: the Bangor Life Events Schedule for Intellectual Disabilities Self-Report, the Brief Symptom Inventory, and the Social Network Map. Results Exposure to life events was positively associated with measures of psychological problems. Social support was generally not found to be associated with psychological problems, although more psychological problems were reported by participants who also reported more criticism of them by others. Conclusion Findings are broadly consistent with the proxy-report literature, though self-report measures may prove more sensitive. A number of methodological issues, clinical implications, and future research directions are discussed. [ABSTRACT FROM AUTHOR]