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Depression and anxiety are common conditions in adults with intellectual disabilities (ID) and often coexist with behaviour problems. We examined whether behaviour problems can be used to screen for depression and anxiety in ID. Clinical prediction models (CPM) generated from independent databases supported the utility of the depression screen, especially in severe/profound ID. CPM did not support the utility of the anxiety screen at any ID level. Given the paucity of screening tools to improve ascertainment of mental ill-health in ID, the short depression screen would be clinically useful in identifying those who need to undergo a full diagnostic evaluation.

Purpose The increase in autism prevalence and presentation in the media suggests a rise in public awareness. This paper aims to explore what factors (contact, knowledge and ethnicity) may be associated to positive attitudes towards individuals with autism spectrum disorder (ASD). Design/methodology/approach An online survey examined contact with and knowledge of ASD among Black, Asian and White ethnic groups to predict public attitudes to people with ASD. Findings In multiple regression models, the results suggested that the level of contact predicts positive attitudes towards autism when demographic factors were accounted. The level of knowledge about autism were significantly associated to attitudes, but not consistently when demographic factors were accounted. However, differences in knowledge and attitudes to people with ASD were identified amongst Black, Asian and White ethnic groups. Research limitations/implications These findings have implications for policy and public health and education campaigns, including ensuring contact and knowledge of autism among the public. Originality/value These findings have implications for policy and public health and education campaigns, including ensuring contact and knowledge of autism among the public. Additionally, further effort is required to target public knowledge and attitudes to autism, particularly among ethnic groups. Institutional support tailored to encourage structured and unstructured contact across public domains such as education, health, social and care practices could effectively reduce prejudice between the public and people with ASD over time.

Background Structured assessments have been shown to assist professionals to evaluate the risk of aggression in secure services for general offender populations and more recently among adults with intellectual disabilities. There is a need to develop intellectual disability sensitive measures for predicting risk of aggression in community samples, especially tools with a focus on dynamic variables. Methods The study prospectively followed 28 participants for up to 2 months to test whether the Current Risk of Violence (CuRV) and Short Dynamic Risk Scale (SDRS) were able to predict verbal and physical aggression in a community sample of adults with intellectual disability. Results CuRV and SDRS ratings significantly predicted verbal and physical aggression over a 2-month period. Conclusions The current study supports the use of the CuRV with adults with intellectual disability living in community settings. The CuRV and SDRS are worthy of future development and evaluation in independent investigations.

BackgroundPlacement behaviours of families of adults with intellectual disabilities has received little or no attention of researches to date.MethodsA prospective design was adopted to exam...

Background\ud Family members caring for children with intellectual disability (ID) routinely report heightened levels of psychological distress. However, families of children with Down syndrome typically report better outcomes (known as the Down syndrome advantage). We examined whether the Down syndrome advantage would be present for maternal psychological distress, impact of caregiving, life satisfaction and perceived positive impact of the child with ID when controlling for external variables.\ud \ud Methods\ud Mothers of children with Down syndrome (n = 111) and mothers of children with ID of mixed aetiologies (n = 196) completed measures about their own mental health, perceived impact of caregiving, life satisfaction and perceived positive impact of their child on themselves and the family unit.\ud \ud Results\ud A series of group comparisons revealed small to moderate differences supporting the presence of a putative Down syndrome advantage in relation to personal maternal well‐being outcomes. However, when child‐related characteristics and external variables were controlled, the Down syndrome advantage was no longer present, with reduced, small effect sizes observed for all maternal outcomes.\ud \ud Conclusions\ud Initial group differences in psychological distress and life satisfaction were largely associated with family poverty, indicating that the Down syndrome advantage may be less robust than previously thought. Future research should seek to move beyond examining the existence of the putative Down syndrome advantage and focus on how families of children with Down syndrome experience family life, including longitudinal research exploring responses to life cycle and transition challenges.

Background\ud Early intervention (EI) can improve a range of outcomes for families of children with developmental disabilities. However, research indicates the level of access does not always match the level of need. To address disparities, it is essential to identify factors influencing access.\ud \ud Method\ud We propose a framework where access to EI is conceptualised as a process that includes three main phases. A narrative review examined potential barriers, facilitators and modifiers of access for each phase.\ud \ud Results\ud The process of access to EI includes the following: 1) recognition of need, 2) identification or diagnosis and 3) EI provision or receipt. Several factors affecting access to EI for each phase were identified, related to the family, services, the intersection between family and services, and the context.\ud \ud Conclusion\ud A broad range of factors appear to influence the process of access to EI for this population. Our framework can be used in future research investigating access. Broad implications for policy, practice and future research to improve access to EI are discussed.

Background\ud Few studies have explored the well‐being of fathers of children with intellectual disability (ID), despite the significant role that they play in their children's lives. The current study compared fathers of children with and without a child with ID on measures of psychological well‐being (life satisfaction, work–family balance and general health) and dimensions of parenting (parenting self‐efficacy and parent–child closeness) and then examined whether the presence of a child with ID in the family was a significant predictor of paternal well‐being when controlling for a number of father (age, education, employment and residency), child (ID status, gender, behavioural and emotional problems) and family (income poverty and number of children in the household) variables.\ud \ud Methods\ud Data were drawn from the third wave of the Millennium Cohort Study, a UK population‐representative and cohort study, where the cohort child was 5 years of age; 256 fathers were identified as having a child with ID, with data available for 10 187 fathers without a child with ID. Fathers were compared on the four well‐being and parenting outcomes and then multiple regression models were conducted to explore associations between these outcomes and variables identified as potential correlates of well‐being.\ud \ud Results\ud Initial group comparisons showed that there were differences in the well‐being of fathers, with fathers of children with ID reporting poorer life satisfaction and general health. However, these differences were small. Regression analyses showed that child behavioural and emotional problems, living in income poverty and paternal employment were more important than disability status in predicting fathers' well‐being.\ud \ud Conclusions\ud These works add to the limited amount of research on fathers using population‐representative data. The current findings are consistent with rejecting a general simplistic and negative narrative that raising a child with ID puts fathers at risk of poorer outcomes. However, some fathers, such as those with children with behavioural problems and living in poverty, may require greater support. Future longitudinal research that explores the impact of paternal well‐being on the long‐term outcomes of children with and without ID is warranted. \ud \ud

Background Despite the high frequency of case-control studies in the developmental disability literature, there is a paucity of research establishing the measurement equivalence of instruments used, and particularly those relating to positive perceptions and experiences in family disability research. Aims The present study sought to establish measurement invariance for the Positive Gains Scale (PGS) across 1219 mothers of children with developmental disabilities, 234 mothers of children with spina bifida/hydrocephalus, and 157 mothers of children without disabilities. Methods and procedures A three-step test for measurement invariance across the three groups was conducted using Multigroup Confirmatory Factor Analysis. Outcomes and results Loadings between the three groups were invariant, suggesting the criteria to assume metric invariance was met. However, the assumption of scalar invariance was not met, suggesting that item intercepts differed between the three groups. Conclusions and implications Our findings suggest that the PGS cannot be meaningfully used to compare outcomes between mothers of children with developmental disabilities and other mothers. These findings may have wider implications for research utilising well-being measures to make comparisons with carers of children with developmental disabilities.

Background:\ud Previous evaluations of community PBS teams have not investigated whether behaviour change is both statistically reliable and clinically significant. Few previous studies have reported quality of life (QoL) and social validity outcomes.\ud \ud Method:\ud The present authors collected data on 85 people referred to a specialist PBS team. The present authors used a unique set of multiple measures and statistical change metrics to evaluate outcome.\ud \ud Results:\ud Statistically significant improvements in QoL and health‐related QoL (HRQoL), with medium to large effect sizes, were demonstrated following PBS input. Mean Behaviour Problems Inventory‐Short Form scores reduced from 37.74 (SD = 30.54) at baseline to 12.12 (SD = 12.24) at follow‐up, with a large effect size (d = 0.84). Stakeholders reported valuing the process and outcomes of PBS, findings which support the social validity of PBS for people with developmental disabilities.\ud \ud Conclusion:\ud This study demonstrates successful PBS outcomes in QoL, HRQoL, challenging behaviour and social validity in a community setting.

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.

Background: The use of Multilevel Models (MLM) and Generalized Estimating Equations (GEE) for analysing clustered data in the field of intellectual and developmental disability (IDD) research is still limited.\ud \ud Method: We present some important features of MLMs and GEEs: main function, assumptions, model specification and estimators, sample size and power. We provide an overview of the ways MLMs and GEEs have been used in IDD research. \ud \ud Results: While MLMs and GEEs are both appropriate for longitudinal and/or clustered data, they differ in the assumptions they impose on the data, and the inferences made. Estimators in MLMs require appropriate model specification, while GEEs are more resilient to misspecification at the expense of model complexity. Studies on sample size seem to suggest that Level 1 coefficients are robust to small samples/clusters, with any higher-level coefficients less so. MLMs have been used more frequently than GEEs in IDD research, especially for fitting developmental trajectories. \ud \ud Conclusions: Clustered data from research in the IDD field can be analysed flexibly using MLMs and GEEs. These models would be more widely used if journals required the inclusion of technical specification detail, simulation studies examined power for IDD study characteristics, and researchers developed core skills during basic studies.\ud

Item does not contain fulltext Difficulties with anger regulation in individuals with mild intellectual disability or borderline intellectual functioning (MID-BIF) are often associated with aggressive behaviour. Psychomotor therapy (PMT), a mind-body intervention often applied in Dutch facilities for this target group, uses body awareness and physical activities as a medium to learn how to gain control over one’s anger and reduce aggressive behaviour. With Intervention Mapping as a framework, 17 Dutch psychomotor therapists were asked to describe their PMT programme to investigate its content and coherence. Results suggested that interoceptive awareness (IA) and adaptive coping skills (ACS) are key elements of the PMT programmes. The theoretical basis of the PMT programmes is however limited and specific instruments for evaluating PMT are not available yet, especially for IA. Psychomotor therapists would gain from a well-described PMT programme. Future research is warranted on IA, and specific instruments need to be developed and validated for this target group. 17 p.

Purpose The Behavior Problems Inventory-Short Form (BPI-S) is a shorter version of the Behavior Problems Inventory-01. In this paper, BPI-S population norms are reported from a total administrative population of adults with intellectual disability (ID). To facilitate the use of the BPI-S in clinical services to assess behavior change, the purpose of this paper is to describe how to use BPI-S clinically significant and reliable change (RC) scores. Design/methodology/approach Data were gathered on 265 adults with ID known to services. Proxy informants completed the BPI-S on challenging behaviors over the previous six months. Clinically significant cut-off values and RC scores were calculated using the Jacobson and Truax’s (1991) method. Findings BPI-S clinical reference data are presented to provide benchmarks for individual and group comparisons regarding challenging behavior. Examples demonstrate how to use clinical norms to determine change. Practical implications Behavior change is a major goal of researchers and practitioners. Data from the present study can make the BPI-S a valuable tool for determining change in challenging behavior following service input or intervention. Originality/value Whilst well used in research, the BPI-S may be less extensively used in practice. This present study provides data to enable researchers and practitioners to use the BPI-S more widely in assessing clinical outcomes, such as intervention research and service evaluation.

Background: Little is known about the role of living circumstances to the perception of subjective well‐being (SWB) and health of adults with intellectual disability (ID). The aim of the present study was to examine whether living circumstances impact differently on the perception of health and SWB and whether potential differences persist after accounting for other variables (e.g. level of support needs and reporting method). Methods: Secondary data analysis was undertaken of a large national survey of adults with an ID in England, aged 16 years and over. Participants were identified as living with family (N = 1528) or living out of home (N = 874). Results: The results of t‐test and chi‐square revealed that levels of health and SWB were perceived as being higher for people living with family than those living in out‐of‐home settings. Multiple linear regression analyses fitted to explore factors associated with these reported differences revealed that, when controlling for other variables, living with family was highly associated with reports of better SWB. Multiple logistic regression revealed that whilst the health status of people living with families were perceived as better, this was only true when their support needs were low. Poorest health outcomes were found for people with highest support needs who lived with family. Conclusions: On the whole, the health and well‐being of adults living with family were perceived more positively than those living out of home. However, potential health disparities exist for those with high support needs who live with family. Further longitudinal research is needed to explore causes and potential solution to these inequalities.

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.\ud \ud 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.\ud \ud 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%).\ud \ud 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.

Despite the elevated levels of stress, anxiety and depression reported by mothers of children with intellectual disabilities (ID), these mothers also experience positive well-being and describe positive perceptions of their child. To date, maternal positivity has been operationalised in different ways by using a variety of measures. In the present study, we tested whether a latent construct of maternal positivity could be derived from different measures of positivity. Method One hundred and thirty-five mothers of 89 boys and 46 girls with ID between 3 and 18 years of age completed measures on parental self-efficacy, their satisfaction with life, family satisfaction, their positive affect and their positive perceptions of their child with ID. We conducted a confirmatory factor analysis of latent positivity and subsequently tested its association with child social skills and behaviour problems, and maternal mental health. Results A latent maternal positivity factor achieved a statistically good fit by using the five observed indicators of positivity. Parental self-efficacy had the strongest loading on the latent factor. Maternal positivity was significantly negatively associated with maternal psychological distress, maternal stress and child problem behaviours and positively associated with child positive social behaviour. Conclusions These findings lend support to the importance of examining parental positivity in families raising a child with ID, and using multiple indicators of positivity. Associations with negative psychological outcomes suggest that interventions focused on increasing parental positivity may have beneficial effects for parents. Further research is needed, especially in relation to such interventions.

Couples raising a child with Autism Spectrum Disorder (ASD) face many challenges. Research so far has focused on whether these couples are more or less likely to separate or divorce compared to other couples whose children do not have ASD. While this is important, we argue that the quality of the couple relationship is equally- if not more- important to research. Systematic evidence from typical development has shown that the quality of the couple’s relationship is related to parenting and also to long-term behavioral and emotional outcomes of children. With this study, we wanted to explore whether mothers and fathers of children with ASD are satisfied with their relationship, and what individual or family-level factors are related to the couple’s relationship satisfaction levels. Our data from 146 couples suggested that mothers and fathers agree on how satisfied they are with their relationship, and that relationship satisfaction appears to be related to parents’ depressive symptoms and the behavior problems of their child with ASD. The higher the depression levels, the lower the parent reported on the dependent variable relationship satisfaction, for both mothers and fathers. Also, as behavior problems increased, relationship satisfaction decreased. Interestingly, relationship satisfaction was not related to the behavior problems of a sibling, the number of children in the household, or the socioeconomic position of families (SEP). Families include interconnected systems whereby an individual’s well-being and behavior can have an impact (positive or negative) on other family dyads such as the couple relationship.

Background There is a high prevalence of psychotropic medication use in adults with Intellectual Disabilities (ID), often in the absence of psychiatric disorder, also associated with challenging behaviour. Previous research has focused on specific sample frames or data from primary care providers. There is also a lack of consistency in the definition of challenging behaviour used. Methods We adopted a total population sampling method. Medication data on 265 adults with ID were classified according to the Anatomical Therapeutic Chemical classification system. The Behaviour Problems Inventory – short form classified challenging behaviours. We examined the association between challenging behaviour and the use of psychotropic medication, and whether any association would still be present after accounting for socio-demographic and clinical characteristics. Results 70.57% of adults with ID were prescribed at least one class of any medication (mean per person =2.62; range 0–14). Psychotropic medications were used by 37.73% of participants with antipsychotics the commonest type used by 21.89% of individuals. Polypharmacy and high dosages were common. Generalised Linear Models indicated significant associations between psychotropic medication and the presence of a psychiatric diagnosis, challenging behaviour, older age and type of residence. Male gender was additionally associated with antipsychotic medication. Conclusions The use of a total population sample identified via multiple routes is less likely to overestimate prevalence rates of medication use. Current challenging behaviour was a predictor of medication use after controlling for other variables. Data indicate that there may be differences in prescribing patterns associated with different topographies of challenging behaviours.

Background\ud The study examined developmental trajectories of prosocial behaviours, internalising and externalising behaviour problems in children with intellectual disabilities (ID) between pre‐school and middle childhood.\ud \ud Method\ud Growth models examined the best‐fitting trajectories for internalising and externalising behaviour problems, as well as prosocial behaviours, in 555 children with ID between the ages of three and 11 years from the UK Millennium Cohort Study. Models were also fitted to examine the association of child outcomes with time‐varying maternal psychological distress and life satisfaction. Finally, models were extended to compare trajectories with typically developing children.\ud \ud Results\ud Externalising behaviour problems and prosocial behaviours generally improved, whereas internalising problems did not change systematically over time. A cubic trend indicated a slowing down of improvement between ages 5 and 7 for prosocial behaviours and externalising problems. Maternal psychological distress positively co‐varied with internalising and externalising behaviour problems over time. Life satisfaction was not related to changes in child behaviours over time. Compared to behavioural trajectories in typical development, intercepts were worse and trajectories also differed in the ID group.\ud \ud Conclusions\ud Over an 8‐year period, externalising behaviour problems and prosocial behaviours of children with ID tended to improve. These behavioural improvements slowed between five and seven years, possibly coinciding with school‐related environmental changes. Children with ID significantly differ from children with typical development in both the initial level of difficulties (exhibiting higher externalising and internalising behaviours, and lower prosocial behaviours) and subsequent development as they age, showing comparatively lower decreases in both externalising and internalising behaviours, and lower increases in prosocial behaviours. Findings also highlight the significant role of maternal mental health problems in the trajectory of child behaviour problems.

Purpose There is growing evidence of the efficacy and effectiveness of targeted parenting programmes but the evidence for universal parenting programmes is much less developed. The purpose of this paper is to evaluate the effectiveness of Parent Gym, a parenting programme delivered in schools. Design/methodology/approach In this paper a quasi-experimental design was utilised. Parents were recruited to the Parent Gym programme comprising six two-hour weekly sessions. Parents completed measures of their parenting efficacy, parenting satisfaction, interest in parenting and mental well-being at pre- and post-course. Comparative data were derived from a retrospectively-defined randomly selected group of non-participant parents at two time points, equivalent to the length of the Parent Gym course. Findings Changes in the Parent Gym group were compared with the comparison group using repeated measures mixed 2×2 ANOVAs, which accounted for the potential effect of demographic characteristics (parent gender, ethnicity, parent age, parent education level and single parent status), and their potential interaction with group membership. Parenting satisfaction showed a significantly greater increase for the Parent Gym group with a large effect size (d=0.80). Regarding parenting efficacy, there was a significant time × group interaction indicating efficacy scores increased in the Parent Gym group but decreased in the comparison group (d=1.93). Mental well-being also improved for the Parent Gym group from below the national norm before the course (d=−0.26) to significantly greater than the national norm at post-course (d=0.29). Research limitations/implications A limitation of the present study is the absence of data on outcomes for children. Second, the administration of the research at local level, primarily the distribution and collection of the measures and return to the research team for analysis, is a potential source of data loss: both pre- and post-programme data were available on 55 per cent of Parent Gym parents, similar to other community studies. Third, the present study did not include a longer term follow-up after the programme ended. Future research is required to examine the sustainability of effects produced from community implemented programmes. Practical implications Findings from the present study indicate that a universal programme, Parent Gym, was effective in aiding the positive development of aspects of parenting behaviour, namely parents’ self-efficacy, parenting satisfaction and mental well-being, when delivered in community settings. This demonstrates its potential as part of a regular service delivery option of evidence-based support for parents. Social implications Successful parenting requires both the development of parenting skills and a positive relationship between parent and child. Parents vary in the resources (e.g. family) available to develop positively. Evidence-based parenting programmes have an important role in aiding parenting development, both those targeted at parents with most challenges and those (universal) aimed across the population. This study demonstrated that the universal Parent Gym programme is effective across a wide range of parents and has the potential to be a positive social resource for community delivery. Originality/value This is the first rigorous study of Parent Gym. It adds to the limited evidence about parenting programmes delivered outside of trials, as part of normal service delivery. With this evidence, parent choice of a suitable evidence-based programme is increased.

Background Adaptive skills measures tend to be lengthy. The GO4KIDDS (Great Outcomes for Kids Impacted by Severe Developmental Disabilities; (Journal of Applied Research in Intellectual Disabilities, 58, 2015 and 594)) Brief Adaptive Behaviour Scale was developed to provide a brief assessment of adaptive skills. Our study aimed to examine the psychometric properties of G04KIDDS Brief Adaptive Scale in a large sample of children in special education. Methods Teachers reported on 361 students with severe to profound intellectual disability. The scale's factor structure was examined through principal components analysis (PCA), while its convergent validity was examined in relation to the Vineland (VABS-II; Vineland-II adaptive behavior scales, Circle Pines, MN, AGS and 2005). Results The PCA indicated a single component measuring overall adaptive skills, which had excellent internal consistency (alpha = 0.93), and convergent validity (Pearson's r = 0.81). Conclusions Teacher-reported scores on GO4KIDDS Brief Behaviour Scale can provide a reliable and valid composite of adaptive skills in children with severe to profound intellectual disability. The scale will be useful to researchers and teachers who need a brief descriptive assessment of adaptive functioning.

Objectives Considerable variation has been reported in the prevalence and correlates of challenging behaviour (CB) in adults with intellectual disabilities (ID). To provide a robust estimate of prevalence, we identified the entire administrative population of adults with ID in a defined geographical area and used a behaviour assessment tool with good psychometric properties. Methods Data from 265 adults who were known to services were collected using a demographic survey tool and the Behavior Problems Inventory – Short Form. The prevalence of self-injurious, aggressive/destructive, stereotyped, and overall CB was evaluated. We explored the potential of developing cumulative risk indices (CRI) to inform longitudinal research and clinical practice. Results The prevalence of overall CB was 18.1% (95% CI: 13.94–23.19%). The prevalence of self-injurious behaviour was 7.5% (95% CI: 4.94–11.37%), aggressive–destructive behaviour 8.3% (95% CI: 5.54–12.25%), and stereotyped behaviour 10.9% (95% CI: 7.73–15.27%). Communication problems and severity of ID were consistently associated with higher risk of CBs. CRIs were significantly associated with CBs, and the five methods of CRI development produced similar results. Conclusions Findings suggest a multi-element response to CB is likely to be required that includes interventions for communication and daytime activity. Exploratory analyses of CRIs suggested these show promise as simple ways to capture cumulative risk in this population. Subject to longitudinal replication, such a tool may be especially useful in clinical practice to identify adults who are priority for interventions and predict future demand on services. Practitioner points The prevalence of challenging behaviour (CB) was 18.1% in this total population study. Stereotypy was the most frequent type of CB. Communication difficulties and severe-profound intellectual disabilities were most systematically related to the presence of CB. Establishing the effect of multiple risk factors is likely to identify people who are priority for interventions. Addressing multiple, rather than singular risks, is likely to be more efficacious. We tested five different methods of putting together a multiple risk index. All methods provided a reasonable association with CB. The most user-friendly method was the additive cumulative risk index (CRI). Limitations This is a cross-sectional design which enabled factors currently associated with CB to be identified for the whole cohort, but these variables may not be those conferring risk for the development or maintenance of CB over time. Future longitudinal research is required to replicate these CRI analyses before concluding about the CRI method with the highest predictive validity.

Background This study explored psychological adjustment and sibling relationships of siblings of children with life-limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these conditions. Methods Thirty-nine siblings participated, aged 3-16 years. Parents completed measures of siblings' emotional and behavioural difficulties, quality of life, sibling relationships and impact on families and siblings. Sibling and family adjustment and relationships were compared with population norms, where available, and to a matched comparison group of siblings of children with autistic spectrum disorder (ASD), as a comparable 'high risk' group. Results LLC siblings presented significantly higher levels of emotional and behavioural difficulties, and lower quality of life than population norms. Their difficulties were at levels comparable to siblings of children with ASD. A wider impact on the family was confirmed. Family socio-economic position, time since diagnosis, employment and accessing hospice care were factors associated with better psychological adjustment. Conclusions Using a systematic classification of LLCs, the study supported earlier findings of increased levels of psychological difficulties in siblings of children with a LLC. The evidence is (i) highlighting the need to provide support to these siblings and their families, and (ii) that intervention approaches could be drawn from the ASD field.

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.

Background Behavioural interventions are frequently used to address sleep problems in people with intellectual disabilities (ID). The current study aimed to systematically review evidence on the efficacy of behavioural interventions for children and adults with ID and sleep problems. Method Electronic and hand searches identified seven studies for inclusion (N=169). Standardized mean difference effect sizes (d) were calculated for group studies (N=4). Non-overlap effect sizes (Tau-U) were calculated for single case experimental design studies (SCEDs; N=3). Results A large effect size (weighted d = 0.923, CI: 0.705 to 1.151) across group studies indicated large improvements in sleep problems following behavioural intervention. Effect size across SCEDs (weighted Tau-U: 0.528, CI: 0.351 to 0.705) indicated a 53% improvement compared to baseline. Sleep initiation and sleep maintenance problems showed significant improvements post-intervention. Follow-up effects were less consistent across study designs, and suggested that some sleep problems maintain gains better than others. Conclusion Meta-analytic evidence from group and SCEDs can provide complementary information about efficacy. Findings propose that behavioural interventions are a promising evidence-based practice for improving sleep problems in people with ID.

Background\ud \ud The review examined the effectiveness of Active Support (RQ1) and stakeholders’ experiences of the model (RQ2).\ud \ud \ud Method\ud \ud Data were meta‐analysed (RQ1; studies = 14) and synthesized narratively (RQ2; studies = 10).\ud \ud \ud Results\ud \ud By follow‐up (6 months post‐training), effect sizes (RQ1) for resident total activity engagement were significant and ranged from small (d = 0.33, 95% CIs: 0.10–0.50) to large (Tau‐U = 0.95, 95% CIs: 0.64–1.25) depending on study design. Follow‐up changes in staff assistance were moderate (d = 0.56, 95% CIs: 0.23–0.89; Tau‐U 0.63, 95% CIs: 0.32–0.93) and large for quality of support (d = 1.03, 95% CIs: 0.61–1.44). Other outcomes did not change. \ud \ud \ud Conclusions\ud \ud Active Support was more effective following complete staff training, in larger settings, at lower staff‐to‐resident ratios and with less experienced staff. Active Support training and outcomes were valued by staff and residents (RQ2), and staff experienced increased job satisfaction. Lower staff turnover and organizational readiness appear crucial for maintaining implementation.

Although mothers raising children with Intellectual Disability (ID) report poorer mental health than parents raising typically developing children, they also report feelings of positivity; both generally and specific to their child. To date little is known about the function of maternal positivity thus, we explored the putative compensatory and protective functions of maternal positivity, within both a cross-sectional and one-year longitudinal framework that examined the relationship between children’s behaviour and mental health problems with maternal mental health problems. Participants included 135 mothers of children with severe ID who were between 3 and 18 years of age. Multiple linear regression models investigated the potential function of maternal positivity. At a cross-sectional level, maternal positivity was found to be a significant independent predictor of maternal stress and moderated the impact of child behaviour problems on maternal parenting stress. Longitudinally, maternal positivity did not have a direct effect on later parenting stress nor function as a moderator. Findings from our cross-sectional analysis are consistent with the view that positivity serves a compensatory function. Further exploration is needed to understand the longitudinal function of maternal positivity.

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.

Mental health problems affect people with intellectual disabilities (ID) at rates similar to or in excess of the non-ID population. People with severe ID are likely to have persistent mental health problems. In this systematic review (PROSPERO 2015:CRD42015024469), we identify and evaluate the methodological quality of available measures of mental health problems or well-being in individuals with severe or profound ID. Electronic searches of ten databases identified relevant publications. Two reviewers independently reviewed titles and abstracts of retrieved records (n = 41,232) and full-text articles (n = 573). Data were extracted and the quality of included papers was appraised. Thirty-two papers reporting on 12 measures were included. Nine measures addressed a broad spectrum of mental health problems, and were largely observational. One physiological measure of well-being was included. The Aberrant Behavior Checklist, Diagnostic Assessment for the Severely Handicapped Scale-II and Mood, Interest and Pleasure Questionnaire are reliable measures in this population. However, the psychometric properties of six other measures were only considered within a single study – indicating a lack of research replication. Few mental health measures are available for people with severe or profound ID, particularly lacking are tools measuring well-being. Assessment methods that do not rely on proxy reports should be explored further.\ud

Background: Providing long-term care to an adult relative with intellectual disability can impact negatively on caregivers’ health and well-being. Methods: Data were collected via online and postal questionnaires on 110 family carers’ physical and psychological health, family stress and perceived positive gains from caring. Psychological adaptation and carers’ satisfaction with available support were also examined. Results: Study participants reported more health problems than general populations. Higher support needs of care recipients were associated with increased family stress. Carers being female were associated with lower family stress. Older age and better socio-economic position were associated with better psychological outcomes. Other associations were consistent with psychological adaption and perceived helpfulness of support buffering negative outcomes and facilitating positive gains from caring. Conclusions: Family carers of adults with intellectual disability appear to experience poorer health outcome than population norms. Adaption to the caregiving role may buffer negative outcomes. Further large scale, population-based,longitudinal research is needed.