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The quality of life (QOL) construct is proposed as a method to assess service outcomes for people utilising disability services. With this in mind, the aim of this study was to conduct a systematic review of available QOL measures for people with intellectual disability (ID) to pinpoint psychometrically sound measures that can be routinely used for service evaluation.A systematic search of the disability literature published between 1980 and 2008 was conducted in order to identify appropriate QOL tools for use within an Australian context. Twenty-four QOL instruments were identified and each instrument was then evaluated against a set of psychometric and measurement criteria.Six of the instruments examined were deemed to be psychometrically sound on the available information. No instruments were found that specifically assess QOL for people with ID who exhibit challenging behaviour. Most of the instruments assess QOL from a subjective perspective, use a questionnaire format and measure only some (not all) of the eight theoretically accepted domains of QOL.More instruments that measure QOL need to be developed and rigorously validated. This is especially the case for high-needs disability populations like those individuals that exhibit challenging behaviour or have severe to profound ID, as it is questionable whether existing measures can be used with these populations.

AIM: Recently, attention has focused on the health inequalities experienced by people with intellectual disabilities (ID) when compared with the general population. To inform policies aimed at equalizing health opportunities, comparable evidence is needed about the aspects of their health that may be amenable to intervention. METHOD: Applying the framework of the European Community Health Indicators (ECHI) for the general population, the Pomona group developed a set of health indicators reflecting aspects of the health of people with ID: socio-demographic data, health status, health determinants and health systems. RESULTS: This paper documents the procedures that partners carried out in 13 European countries. The process comprised a search for evidence in published literature; consultation with advocates, family members and health professionals; and analyses of national and international databases. Indicators were selected if they were appraised as important, useful, measurable and if resulting data would enable comparisons between the health of people with ID and that of the general population. CONCLUSION: The thus developed indicator set that is aligned with ECHI will permit investigators to compare key aspects of health of people with ID with those of people in the general population within Europe. The final set of 18 indicators will be applied in the Pomona 2 project (2005-08) to gather information about the health of samples of adults in 14 participating European countries.

Background People with intellectual disabilities (IDs) whose behaviour challenges services are at increased risk of placement breakdown. Most previous research has tended to focus on the role of individual characteristics in predicting breakdown. A small number of studies have suggested that service variables may impact on intervention effectiveness and hence placement breakdown. Method This study used a non-experimental group comparison design to investigate potential differences between two groups of residential homes, one of which had experienced placement breakdown, and one of which had successfully maintained placements in the community. Results More residents in the breakdown group had inappropriate sexual behaviours but there were no other differences. Services in the breakdown group had more limited procedural guidance for staff, weaker training, supervision and team meetings and less external professional support. Conclusion Placement characteristics may be an important determinant of community placement success for people with IDs and challenging behaviour. Those selecting and funding residential placements for such people should attend to the technical competence of the placement (in terms of its use of procedural guidance, training and professional advice) and to the extent of support for staff (in terms of training, supervision and team meetings).

Background Five factors are proposed as important in influencing the provision of psychological therapy to people with intellectual disabilities (IDs): the perceived effectiveness of psychological therapy, individual clinician competence, service resources (number of trained clinicians), the level of the client’s disability and the diagnostic overshadowing bias. Method A prospective questionnaire design was used. A survey style questionnaire was sent out to clinical psychologists ( n =  ) and psychiatrists ( n =  ) working in ID services in the UK. Responses were received from  psychologists and  psychiatrists. Results Perceived competence, the level of the client’s disability and the diagnostic overshadowing bias all appeared to be important factors. The perceived effectiveness of psychological therapy with this client group and service resources appeared less important than hypothesized. Conclusion Whereas the debates in research publications tend to focus on broad issues of effectiveness, clinicians themselves appear more concerned with their personal skill levels. The issue of the appropriateness of psychological therapies for people with more severe levels of disability remains largely unresearched.

Background There has been no longitudinal study in Taiwan to identify the nature and the scale of medical care utilization of people with intellectual disabilities (IDs) up to the present. The aim of this study is to describe inpatient utilization among people under ID care in institutions in order to identify the pattern of medical care needs and the factors affecting utilization in Taiwan. Method The subject cohort was  individuals with ID who were cared for by a large public disability institution from  to  in Taipei, Taiwan. Results On the examination of the inpatient care that these persons underwent, it was found that these individuals had a heightened need (inpatient rate:  .  ‐  .  %) for inpatient care compared with the general population with disabilities (  .  %) in Taiwan. The main reasons for hospitalization were pneumonia, gastrointestinal disorders, cellulites, orthopaedic problems, epilepsy and bronchitis. Using the full model of Generalized Estimating Equations for inpatient care utilization, the factors including low income family, living in an institution, being a subject with cerebral palsy and being a high outpatient user all influenced the use of inpatient care. Conclusions This study highlights that health authorities need to promote health planning more in order to ensure an excellent quality of health monitoring and health promotion among people with ID cared for by institutions.

Behavioural problems are common in people with intellectual disability (ID) and are often treated with antipsychotics.To establish the frequency and characteristics of people with ID included in randomised controlled trials (RCTs) on antipsychotic treatment for behavioural problems, and to investigate the quality of these RCTs.A literature search in EMBASE, PubMed and Cochrane was performed and reviewed.People with ID participated in 27 of the 100 included RCTs. The RCTs were of good quality but smaller compared with trials in patients with dementia or schizophrenia (average sample sizes = 55, 124 and 374). In 13/27 trials no clear definition of ID was given. Over 25 different outcome measures were used to assess behavioural problems.Studies in which people with ID are included are of a sufficient quality, but of a small size. The heterogeneity in the characteristics of the ID population included as well as in the applied assessment instruments makes performing meta-analyses unfeasible.

The most prevalent type of structural variation in the human genome is represented by copy number variations that can affect transcription levels, sequence, structure and function of genes.In the present study, we used the multiplex ligation-dependent probe amplification (MLPA) technique and quantitative PCR for the detection of copy number variation in 132 intellectually disabled male patients with normal karyotypes and negative fragile-X-testing.Ten of these patients (7.6%) showed copy number variation in the subtelomeric regions, including deletions and duplications.Duplications of the SECTM1 gene, located at 17q25.3, and of the FLJ22115 gene, located at 20p13, could be associated with phenotype alterations. This study highlights the relevance in the aetiology of intellectual disability of subtelomeric rearrangements that can be screened by MLPA and other molecular techniques.

There is a need for validated, standardised tools for the assessment of executive functions in adults with intellectual disabilities (ID). This study examines the validity of a test of planning and problem solving (Tower of London) with adults with ID.Participants completed an adapted version of the Tower of London (ToL) while day-centre staff completed adaptive function (Adaptive Behaviour Scale - Residential and Community: Second Edition, modified version) and dysexecutive function (DEX-Independent Rater) questionnaires for each participant. Correlation analyses of test and questionnaire variables were undertaken.The adapted ToL has a robust structure and shows significant associations with independent living skills, challenging behaviour and behaviours related to dysexecutive function.The adapted ToL is a valid test for use with people with ID. However, there is also a need to develop other ecologically valid tools based on everyday planning tasks undertaken by people with ID.

Attachment research has shown the importance of attachment behaviour for the prevention of dysregulated behaviour due to emotional distress. The support of an attachment figure may be especially important for people with intellectual disability (ID), because they are less adept in dealing with stressful situations on their own. Our purpose was to examine the role of support staff as targets of attachment behaviour for young people with ID by testing the hypothesis that young people who more often engage in attachment interactions with group care staff are less at risk for challenging behaviours. The study design included professional caregivers' report of young persons' attachment behaviour across different relationships to address the relationship-specific nature of attachment behaviour in a group care context.Support staff rated attachment behaviour of 156 young participants with moderate to severe ID who were attending a group care setting. For each participant, we asked two members of the classroom support staff to fill out the Secure Base Safe Haven Observation list. One of them also rated challenging behaviour (Abberant Behavior Checklist).Young people who showed more secure attachment behaviour towards professional caregivers were less irritable, less lethargic and less stereotypic in their behaviour, even if we controlled for developmental age and Autism Spectrum Disorders. Two results point in the direction of relationship-specific attachment behaviour: the absence of high consistency in a person's attachment behaviour towards two different caregivers and the independent contribution of each of these relationships to explaining differences in lethargy and stereotypies. A certain preference in attachment behaviour towards specific caregivers was not associated with challenging behaviour.Findings suggest that attachment behaviour may be part of young persons' adaptation to the stresses and challenges of group care. Furthermore, adaptation may be determined by the integration of relationships with support staff, because each relationship with a care staff member bears uniquely on challenging behaviour.

An assessment of mental capacity includes an evaluation of the ability to 'weigh up' information, but how to do this is uncertain. We have previously used a laboratory decision-making task, temporal discounting, which involves a trade-off between the value and the delay of expected rewards. Participants with intellectual disabilities (ID) showed very little evidence of 'weighing up' of information: only a third of participants showed consistent temporal discounting performance, and when present, consistent performance was usually impulsive; and the ability to perform consistently was more strongly related to executive functioning than to IQ. The aim of the present study was to replicate these observations and extend them to a more realistic financial decision-making task.We administered a temporal discounting task and a financial decision-making task, as well as tests of executive functioning and IQ, to 20 participants who attended day services for people with learning disabilities (mean Full-Scale IQ = 59), and to 10 staff members.Performance in both decision-making tasks was related more strongly to executive functioning than to IQ. In both tasks, decisions by service users were made largely on the basis of a single item of information: there was very little evidence in either task that information from two sources was being 'weighed'.The results suggest that difficulty in 'weighing up' information may be a general problem for people with ID, pointing to a need for psycho-educational remediation strategies to address this issue. The importance of executive functioning in decision-making by people with ID is not recognized in the legal test for mental capacity, which in practice includes a possibly irrelevant IQ criterion.

Background The social climate of inpatient facilities is thought to be an important contributor to treatment outcome. However, little research has focused on this construct within secure forensic services for people with intellectual disabilities (ID). Therefore, the objective of this study was to investigate the social climate of two different types of secure units (‘low’ secure vs. ‘medium’ secure) contained within the same facility for offenders with ID. Two hypotheses were generated: (1) residents would rate the social climate of the whole facility in a more negative direction than staff, and (2) residents and staff would rate the social climate of the ‘low’ secure unit in a more positive direction than that of the ‘medium’ secure unit. Method Using a 2 (factor ‘Participant’ = Staff or Resident) × 2 (factor ‘Unit’ = ‘Low’ or ‘Medium’ Secure Unit) between-subjects design, 18 residents and 37 staff members were recruited and completed the Correctional Institutions Environment Scale (CIES), a measure of social climate. Results Residents tended to rate the units in a more positive direction than staff on some sub-scales. Participants rated the ‘low’ secure unit in a more positive direction than the ‘medium’ secure unit on two sub-scales of the CIES. However, on selected sub-scales there were differences. The findings of this study suggest that the CIES may be a valid instrument for use within forensic services for people with ID, and further suggests that residents and staff have different perceptions of the shared social climate, which may have implications for service development.

Background People with intellectual disabilities (IDs) have a higher level of health needs, a higher level of which is unmet, compared with the general population. Health screening can detect unmet health needs, but it is unknown whether it effects beneficial health outcomes in the longer term. People with IDs are reliant on health management by proxy and there are many potential access barriers that may prevent health needs identified at screening from subsequently being met. This study aims to determine whether health gains can be detected 1 year after a health screening programme specific to the needs of adults with IDs. Methods A total of 50 participants offered the health screen intervention were individually matched for gender, age and level of IDs with 50 control participants who received standard treatment only. Outcome measures after 1 year were semi-structured review of medical case notes, and semi-structured assessment with the people with IDs and their carer. Results During the 1-year period, the incidence of health need detection was more than twice as great for intervention, compared with control participants (mean number of new needs was 4.80 compared with 2.26; P

Background People with intellectual disabilities (IDs) experience significant health inequalities compared with the general population. The barriers people with IDs experience in accessing services contribute to these health inequalities. Professionals’ significant unmet training needs are an important barrier to people with IDs accessing appropriate services to meet their health needs. Method A three group, pre- and post-intervention design was used to test the hypothesis that a training intervention for primary health care professionals would increase the knowledge and self-efficacy of participants. The intervention had two components – a written training pack and a 3-hour face-to-face training event. One group received the training pack and attended the training event, a second group received the training pack only, and a third group did not participate in the training intervention. Research measures were taken prior to the intervention and 3 months after the intervention. Statistical comparisons were made between the three groups. Results The participants in the training intervention reported that it had a positive impact upon their knowledge, skills and clinical practice. As a result of the intervention, 35 (81.4%) respondents agreed that they were more able to meet the needs of their clients with IDs, and 33 (66.6%) reported that they had made changes to their clinical practice. The research demonstrated that the intervention produced a statistically significant increase in the knowledge of participants (F = 5.6, P = 0.005), compared with the group that did not participate in the intervention. The self-efficacy of the participants that received both components of the intervention was significantly greater than the group that did not participate in the training (t = 2.079, P = 0.04). Participation in the two components of the training intervention was associated with significantly greater change in knowledge and self-efficacy than those receiving the training pack alone. Conclusion This intervention was effective in addressing the measured training needs of primary health care professionals. Future research should directly evaluate the positive benefits of interventions on the lives of people with IDs.

Background There is a lack of a conceptual framework as to how stress and attribution variables interact and influence staff behaviour in response to challenging behaviour. To address this, a model is tested examining the impact of stress on attributions of challenging behaviour within Weiner's model of helping. Method A total of 107 staff working in community homes for people with intellectual disabilities completed a self-report questionnaire that measured stress, burnout, attributions, emotions, optimism and helping behaviour in response to challenging behaviour. Results Partial support was found for the role of attributions and emotions. However, although staff reported high stress levels and moderate burnout, this did not appear to relate to their reporting of thoughts and feelings regarding challenging behaviour predicted by Weiner's helping model. It was not possible to fully test the helping model, as the ‘help’ variable was not normally distributed. Conclusions There was little evidence to suggest that stress has a primary role in determining staff responses when examined within Weiner's model of helping. Limited support in general was offered for Weiner's helping model. Potential conceptual difficulties and clinical implications are explored and alternative models for future research are discussed.

Background Our knowledge and understanding of grief and its consequences have grown rapidly in recent years. There is a growing understanding that bereavement and loss represent a very significant event in the lives of people with intellectual disabilities (IDs). To date, there is no systematic review of the literature on the emotional, psychiatric and behavioural responses to bereavement in people with IDs. Method This comprehensive literature review firstly examines the current opinion regarding the phenomenology of pathological grief in the general population. Research examining the ability of people with IDs to understand the concept of death is explored. In addition, a systematic review of the literature looking at the emotional, behavioural and psychiatric responses to bereavement is carried out. Results Bereavement and loss have distinct effects on the mental health, behaviour and emotional lives of people with IDs. Following a bereavement, symptoms of depression and anxiety increase, and general behaviour is altered. Traumatic grief symptoms have not yet been specifically studied and quantified. Conclusions Particular difficulties are associated with researching the effects of bereavement on people with IDs. Further work needs to be done to more accurately describe the nature, time-scale, severity and frequency of the symptoms of traumatic grief in people with IDs, in order to improve assessment and treatment of affected individuals.

Background Social stigma and its impact on the life opportunities and emotional well-being of people with intellectual disabilities (IDs) are a subject of both practical and theoretical importance. The disability movement and evolving theories of self, now point to individuals’ ability to develop positive identities and to challenge stigmatizing views and social norms. Method This paper presents findings from a phenomenological study of 10 individuals making the transition from their family home to live more independently and 18 individuals moving from a long-stay hospital to live in community housing. It builds on an earlier data set obtained from people living at home with their families and examines: (1) people's awareness of stigma, and (2) their modes of adaptation to stigma. Results The participants all believed that they faced stigmatized treatment and were aware of the stigma associated with ID. They presented a range of views about self in relation to disability and stigma. These views included regarding themselves as part of a minority group who reject prejudice, and attempts to distance themselves from stigmatizing services and from other individuals with IDs. Conclusions The findings are discussed in relation to theories of self and the importance of considering psychosocial factors is stressed in clinical work with people who have IDs.

Background In England and Wales, if a person is thought to lack capacity to make a decision to undergo a sterilisation operation, a specific process occurs. A Judge sitting in the Family Division of the High Court receives evidence from relevant parties including psychiatric and gynaecological experts and subsequently decides on the lawfulness of the sterilisation operation. We have investigated who was referred and by whom, the reasons given, and the outcomes of the legal process during an 11-year period. Methods A retrospective case note study was undertaken of all referrals to the Official Solicitor’s Office for sterilisation between 1988 and 1999. Using an established protocol, information was obtained from legal and clinical notes relating to the initial referral to the Official Solicitor, the opinions of experts, the court proceedings and the outcome. Results Seventy-three people, only three (5%) of whom were men, were referred over the 11 years. They were aged between 12 and 41 years. All but one had an intellectual disability (ID). Seventy-five per cent were living at home and did not have partners. Full applications were made for 50 of the 73 (68.5%), 39 proceeding to a court hearing. For 31 of the 39 (79.5%) cases, the court ruled that sterilisation would be in the person’s ‘best interests’. An additional six women probably had operations resulting in sterilisation without court authorization. Conclusions Referrals for sterilisation are almost always for people with IDs. In the case of the majority, it was thought that it was unlikely that they had had or will have in the future a sexual relationship. Care needs to be taken in interpreting the results in this case note study. We hypothesize that the request for sterilisation is the consequence of a complex process reflecting concerns about the future, but in the context of other family issues. The relationship between lacking the capacity to consent to sterilisation and the capacity to consent to sexual intercourse needs further exploration. Future studies including interviews with those involved are required.

Background In Taiwan, 92–95% of people with an intellectual disability (ID) live with their families, with the remaining residing in residential facilities. Instead of funding community-living alternatives, the Taiwanese Government funds only registered facilities as part of its residential policies and services. The purpose of this study was to evaluate current policies and services trends regarding people with an ID in Taiwan. Methods Both documentary research, such as an analysis of policies, services programmes, official statistics, surveys, reports and funding provision reports, and a mail survey, were conducted to examine current trends and characteristics of the 96 residential settings available for people with an ID in Taiwan. Results During the 1990s in Taiwan, residential programmes for people with an ID showed the biggest growth since 1952. Since the first ‘Community Home’ was launched in 1990, the number of smaller scale residential settings with a unit size of less than 30 has grown significantly, particularly since 2000. However, the rate of institutionalization of people with an ID and who live in the institutions has also risen. Conclusions In Taiwan, unlike in Western societies, residential services for people with an ID provided by formal care systems are tending to grow in number, and these include both large and smaller residential settings.

Organizational culture has been shown by organizational psychology to influence important aspects of staff behaviour. In particular, mismatches between staff perceptions of real and ideal organizational cultures have been shown to be associated with a range of negative outcomes for staff, such as stress, sickness and staff turnover. The present study investigates organizational culture in services for people with intellectual disabilities. The aim was to discover the prevalent organizational cultures in these services, and associations between organizational culture and staff outcomes. As part of a large-scale survey of staff in services for people with intellectual disabilities, information concerning organizational culture and staff outcomes was collected from 450 staff. A self-report measure of real and ideal organizational culture produced nine dimensions of organizational culture: (I) tolerant/staff-oriented; (2) achievement-oriented; (3) innovative; (4) analytical; (5) social relationships; (6) rewarding staff; (7) stable work environment; (8) demanding; and (9) conflict management. These nine dimensions of organizational culture showed generally adequate psychometric properties. While there was some variation in organizational culture across services, there is little variation across staff with different job titles. Overall, the staff rated real organizational cultures to be relatively high in achievement orientation and fostering social relationships, and relatively low in managing conflict and providing rewards for staff. Staff rated ideal organizational cultures to be high in rewarding staff, being tolerant/staff-oriented and fostering social relationships, and low in demands on staff. Except for the dimension of making demands on staff, where staff rated organizations as considerably higher than ideal, staff generally rated organizations as being less than ideal on all dimensions of organizational culture. Organizational psychology theory predicts that poor 'person-organization fit' (i.e. a greater mismatch between real and ideal organizational culture) will be associated with a range of negative staff outcomes. This theory was largely supported by findings of the present study. The implications for practice and for future research are discussed.

Mainstream schooling is a key policy in the promotion of social inclusion of young people with learning disabilities. Yet there is limited evidence about the school experience of young people about to leave mainstream as compared with segregated education, and how it impacts on their relative view of self and future aspirations. Sixty young people with mild to moderate intellectual disabilities in their final year of secondary school participated in this study. Twenty-eight individuals came from mainstream schools and 32 attended segregated school. They completed a series of self-report measures on perceptions of stigma, social comparison to a more disabled and non-disabled peer and the likelihood involved in attaining their future goals. The majority of participants from both groups reported experiencing stigmatized treatment in the local area where they lived. The mainstream group reported significant additional stigma at school. In terms of social comparisons, both groups compared themselves positively with a more disabled peer and with a non-disabled peer. While the mainstream pupils had more ambitious work-related aspirations, both groups felt it equally likely that they would attain their future goals. Although the participants from segregated schools came from significantly more deprived areas and had lower scores on tests of cognitive functioning, neither of these factors appeared to have an impact on their experience of stigma, social comparisons or future aspirations. Irrespective of schooling environment, the young people appeared to be able to cope with the threats to their identities and retained a sense of optimism about their future. Nevertheless, negative treatment reported by the children was a serious source of concern and there is a need for schools to promote the emotional well-being of pupils with intellectual disabilities.

A meta-analysis of prevalence and cohort studies conducted over the last 30 years was carried out to identify risk markers for challenging behaviour shown by individuals with intellectual disabilities (IDs). A total of 86 potential studies was identified from the review, with 22 (25.6%) containing sufficient data to enable a statistical analysis to be conducted. Results indicated that males were significantly more likely to show aggression than females, and that individuals with a severe/profound degree of ID were significantly more likely to show self-injury and stereotypy than individuals with a mild/moderate degree of ID. Individuals with a diagnosis of autism were significantly more likely to show self-injury, aggression and disruption to the environment whilst individuals with deficits in receptive and expressive communication were significantly more likely to show self-injury. In most cases, tests for heterogeneity were statistically significant, as expected. The meta-analysis highlighted the paucity of methodologically robust studies of risk markers for challenging behaviours and the lack of data on incidence, prevalence and chronicity of challenging behaviour in this population.

BackgroundGiven the much greater COVID-19 mortality risk experienced by people with intellectual disabilities, understanding the willingness of people with intellectual disabilities to take a COVID-19 vaccine is a major public health issue.MethodIn December 2020-February 2021, across the United Kingdom 621 adults with intellectual disabilities were interviewed remotely and 348 family carers or support workers of adults with intellectual disabilities with greater needs completed an online survey, including a question on willingness to take a COVID-19 vaccine if offered. Results87.0% of interviewees with intellectual disabilities were willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having already had a flu vaccine, gaining information about COVID-19 from television but not from social media, and knowing COVID-19 social restrictions rules. 81.7% of surveyed carers of adults with intellectual disabilities with greater needs reported that the person would be willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having a health condition of concern in the context of COVID-19, having had a flu vaccine, being close to someone who had died due to COVID-19, and having shielded at some point during the pandemic.ConclusionsReported willingness to take the COVID-19 vaccine is high amongst adults with intellectual disabilities in the UK, with factors associated with willingness having clear implications for public health policy and practice.

People with intellectual disabilities are more likely than people in the general population to experience life events associated with an increased risk of mental health problems. However, there has been little research in Japan on the prevalence of mental health problems in adults with intellectual disability (ID) or on associated factors and access to relevant services.Informants completed the Japanese version of the Psychiatric Assessment Schedule for Adults with Developmental Disabilities Checklist, and questions on the use of mental health services, for 126 adults with ID living in Tokyo.A total of 23.8% of adults with ID had scores above the Psychiatric Assessment Schedule for Adults with Developmental Disabilities Checklist threshold score. Mental health problems were associated with age, gender and life events and not associated with the level of ID or living environment. Approximately 60% of participants with mental health problems were treated by psychiatrists and 6% of them received psychotherapy.In the present study, mental health problems occurred in adults with ID at similar frequencies as in previous studies. Adults with ID who experienced mental health problems tended to receive less psychological therapy than the general Japanese population experiencing such problems. This result may indicate poor provision of psychological services for people with intellectual disabilities in Japan.

Transition to adulthood may be a period of vulnerability for health for individuals with intellectual disabilities. No large-scale studies have compared the health of individuals with and without intellectual disabilities undergoing transition. The aims of this study were (1) to compare health during transition for individuals with and without intellectual disabilities across a whole country population and (2) to establish whether transition is associated with health in the population with intellectual disabilities.Data were drawn from Scotland's Census, 2011. Frequency data were calculated for young people with and without intellectual disabilities. Logistic regressions were used to determine the extent to which intellectual disabilities account for seven health outcomes (general health, mental health, physical disabilities, hearing impairment, visual impairment, long-term illness and day-to-day activity limitations), adjusted for age and gender. Within the intellectual disabilities population, logistic regressions were then used to determine whether age group (13-18 or 19-24 years) is associated with the seven health outcomes, adjusted by gender.A total of 5556/815 889 young people aged 13-24 years had intellectual disabilities. Those with intellectual disabilities were 9.6-125.0 times more likely to have poor health on the seven outcomes. Within the population with intellectual disabilities, the 19- to 24-year-olds with intellectual disabilities were more likely to have mental health problems than the 13- to 18-year-olds, but did not have poorer health on the other outcomes. The difference between age groups for mental health problems was greater for young people who did not have intellectual disabilities, but their overall level of mental health problems was substantially lower than for the young people with intellectual disabilities.This largest-to-date study quantifies the extent of the substantial health disparities experienced by young people with intellectual disabilities compared with people without intellectual disabilities. The young population with intellectual disabilities have substantial health problems; therefore, transition between child and adult services must be carefully planned in order to ensure that existing health conditions are managed and emerging problems minimised.

Mindfulness-based interventions have been shown to be effective in the treatment of a range of health and psychological disorders in adults and young people without intellectual disabilities (ID). Clinical studies are emerging reporting on the efficacy of mindfulness-based interventions as a stand-alone treatment for common clinical disorders in adults with ID.This paper aims to evaluate the efficacy of an innovative structured mindfulness-based cognitive therapy (MBCT) group programme adapted for adults with ID with a diagnosis of either recurrent depression, anxiety or both clinical conditions and a history of deliberate self-harm behaviour. Two groups ran consecutively consisting of a total of fifteen participants and seven carers. All participants were recorded as having either a borderline, mild, or moderate ID. The group programme ran over a period of 9 weeks with a follow-up session at 6 weeks post group intervention. Outcome measures included the Hospital Anxiety and Depression Scale and two sub-scales from the Self-Compassion Scale administered at baseline, post therapy and at 6-week follow-up.The evaluation showed that participants reported an improvement in their experience of depression, anxiety, self-compassion and compassion for others. The most significant impact was in the reduced levels of anxiety reported. Improvements across all outcomes were maintained at 6-week follow-up.The results of the evaluation suggest that people with intellectual disabilities benefit from a structured MBCT group intervention and the results are maintained at 6-week follow-up.

Psychiatrists are responsible for providing proper care for people with intellectual disability who have psychiatric disorders. This study examined psychiatrists' perceptions of their own training, knowledge and therapeutic skills, as well as their attitudes towards this population.Questionnaires were distributed to 679 psychiatrists working within the public sector in Israel.Completed questionnaires were returned from 256 psychiatrists (38% response rate). Most (90%) participants reported having had limited training in the diagnosis and treatment of people with intellectual disabilities, while between 34% and 72% reported having inadequate knowledge in specific areas.The findings of limited training and self-perceived inadequate knowledge are at least partially explained by the service model, wherein people with intellectual disabilities are cared for by general mental health services. The identified inadequacies could be overcome through the implementation of a model in which specially trained psychiatrists are deployed within generic services.

This study examined the potential of a retrospective video reviewing process [Burford Reviewing Process (BRP)] for enabling people with intellectual disabilities to describe their experiences of cognitive behaviour therapy (CBT). It is the first time that the BRP, described in this paper, has been used with people with intellectual disabilities and the aim was to assess the feasibility of the procedure and gain a picture of the information it might yield.Using the BRP, 12 clients reviewed tapes of their fourth and ninth CBT sessions and six reviewed the fourth session only. All reviews were audio recorded for later verbatim transcriptions of clients' comments. Reviews and transcriptions were conducted by non-clinical researchers. Thematic analysis was applied to the transcripts by a researcher who was not CBT-trained.All clients were able to follow the instructions for the BRP. Three broadly based themes encapsulated their responses - how they felt about themselves, how they felt the therapist was helping and how CBT was helping. A fourth theme referred to comments on issues that were currently troubling clients, which were prompted by watching the video but did not refer to actual events on screen.The BRP seems a feasible approach with this client group and gave insights into their feelings and opinions on CBT. Clinical implications of the results and the potential for further developments are discussed.

Ageing in people with intellectual disabilities has become a central concern of service providers and research workers during the past 20 years. Their emergence as an identifiable population of older people with intellectual disabilities reflects, in part, improvements in medical and social service provision. However, interest in this group is primarily a reflection of the fact that, despite services developed in the light of principles of normalization, they remain readily identifiable as people in receipt of specialist intellectual disability services, in consequence typically clearly differentiated from the mainstream of older people generally. Analysis of this situation and other factors impacting on older people with intellectual disabilities can be undertaken through the use of ecological models conceptualized in terms of interacting, nested ecologies. The emergence of research on the impact of cultural influences on family carers and service provision is addressed within the framework of the ecological model, and methodological cautions are offered. The enduring the role of family carers and their motivation to continue caring is described.

Anxiety disorders have high prevalence in people with intellectual disabilities. In populations without intellectual disabilities, cognitive behavioural therapy is a first line psychological therapy for these presentations. There is no existing review of the range of methods and outcomes from intervention studies in this area.A systematic review was carried out following guidance in the Cochrane handbook for systematic reviews of interventions.Nineteen studies were identified. The majority of reports were descriptive case studies; the most frequently described presentations were non-specific anxiety disorders and post-traumatic stress disorder; the most frequently described cognitive techniques were psycho-education and interventions directly aimed at thoughts and beliefs and most studies reported positive outcomes, although the better controlled studies tended to report less comprehensive impacts.A range of presentations have been described although the area is still at a primarily descriptive stage. We discuss intervention structures and approaches that require further research.

People with intellectual disabilities (ID) often do not meet recommended guidelines for physical activity. The aim of this study was to systematically review available evidence that evaluated the effectiveness of interventions to increase physical activity in individuals with ID.Five electronic databases (MEDLINE, CINAHL, EMBASE, SPORTDiscus and Cochrane Central Register of Controlled Trials) were searched from inception of the database to July 2017 to identify randomised controlled trials that evaluated the effectiveness of interventions to improve physical activity among people with ID. Trials were included if they measured at least one objective measure of physical activity. Quality appraisal was completed by two independent reviewers using the Cochrane Risk of Bias Tool. The magnitude of treatment effect was estimated for each intervention by calculating the standardised mean difference (SMD) and associated 95% confidence interval.Nine randomised controlled trials (976 participants, 501 women, age range 9 months to 83 years) were included. Four trials evaluated unimodal interventions and five trials evaluated multimodal health promotion programmes based on using supportive environments to enable sustained behavioural changes in physical activity. None of the trials were rated as low risk of bias as all had at least one item on the Cochrane Risk of Bias Tool that was considered to be high risk. No trials were able to implement participant blinding. Three trials found statistically significant beneficial effects of interventions for increasing physical activity. Results showed that a 10-week progressive resistance training programme led to maintenance of physical activity levels at 24 weeks in adolescents with Down syndrome (SMD 0.78, 95% CI 0.17 to 1.40). Additionally, a 12- to 16-month multicomponent diet and physical activity programme produced improvement in physical activity at programme completion in adults with ID (reported effect size of 0.29). Finally, an 8-month physical activity and fitness programme increased physical activity at 8 months in adults with ID (SMD 0.91, 95% CI 0.20 to 1.60). Findings regarding other interventions were inconclusive with small effects that were not statistically significant.There is inconsistent evidence of the effects of interventions for improving physical activity levels in individuals with ID. A progressive resistance training programme was found to maintain physical activity levels in adolescents with Down syndrome, while a multicomponent diet and physical activity programme and a physical activity and fitness programme were found to improve physical activity levels in adults with ID. Future trials using rigorous research designs are required to confirm these findings and establish whether other interventions designed to increase physical activity in people with ID are effective.

People with intellectual disabilities face a much greater burden and earlier onset of physical and mental ill-health than the general adult population. Physical-mental comorbidity has been shown to result in poorer outcomes in the general population, but little is known about this relationship in adults with intellectual disabilities.To identify whether physical ill-health is associated with mental ill-health in adults with intellectual disabilities and whether the extent of physical multi-morbidity can predict the likelihood of mental ill-health. To identify any associations between types of physical ill-health and mental ill-health.A total of 1023 adults with intellectual disabilities underwent comprehensive health assessments. Binary logistic regressions were undertaken to establish any association between the independent variables: total number of physical health conditions, physical conditions by International Classification of Disease-10 chapter and specific physical health conditions; and the dependent variables: problem behaviours, mental disorders of any type. All regressions were adjusted for age, gender, level of intellectual disabilities, living arrangements, neighbourhood deprivation and Down syndrome.The extent of physical multi-morbidity was not associated with mental ill-health in adults with intellectual disabilities as only 0.8% of the sample had no physical conditions. Endocrine disease increased the risk of problem behaviours [odds ratio (OR): 1.22, 95% confidence interval (CI): 1.02-1.47], respiratory disease reduced the risk of problem behaviours (OR: 0.73, 95% CI: 0.54-0.99) and mental ill-health of any type (OR: 0.73, 95% CI: 0.58-0.92), and musculoskeletal disease reduced the risk of mental ill-health of any type (OR: 0.84, 95% CI: 0.73-0.98). Ischaemic heart disease increased the risk of problem behaviours approximately threefold (OR: 3.29, 95% CI: 1.02-10.60).The extent of physical multi-morbidity in the population with intellectual disabilities is overwhelming, such that associations are not found with mental ill-health. Mental health interventions and preventative measures are essential for the entire population with intellectual disabilities and should not be focussed on subgroups based on overall health burden.

BackgroundThe active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research.MethodA total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round.ResultsThis consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research.ConclusionsConsensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas.

Self-injurious behaviour (SIB) is a treatment-resistant aberrant behaviour that significantly impacts the lives of people with intellectual disabilities (ID). Direct observations of SIB under naturally occurring conditions can inform the unique structural properties of these behaviours, and the contexts in which they occur. While previous applications of sequential analyses have identified strong temporal associations between instances of SIB, they have relied on methods that do not adequately control for chance sequencing and may mask within-participant variability by pooling data across contexts and response topographies. We applied a new sequential analysis method to quantify SIB-SIB contingencies within and across topographies for individuals with ID in community settings. We also explored the extent to which the direction and strength of SIB-SIB contingencies varied by context.Seven individuals with chronic SIB were video-recorded during their daily routines. A continuous, timed-event data collection system was used to measure frequencies of five topographies of SIB and duration of staff interactions. We used an event lag with pauses sequential analysis method to estimate SIB-SIB contingencies within and across topographies and during times with and without staff interaction.Positive SIB-SIB contingencies were identified for all participants, with contingency strengths varying among participants and topographies. The strength and direction of the SIB-SIB contingencies also varied by the presence and absence of staff interaction.Our results suggest the direction and strength of SIB-SIB contingencies may be fluid based on the presence or absence of certain environmental context variables. Evaluating SIB-SIB contingencies under different environmental conditions may help identify contexts in which SIB is likely to persist.

Measuring quality of life (QoL) in people with intellectual disabilities (IDs) can help organisations and practitioners to implement evidence-based practices and develop person-centred planning and individualised supports. There is no reliable and valid instrument for assessing QoL in people with ID in Colombia. We investigated the internal structure of the Colombian version of the INICO-FEAPS scale and tested whether the scale identified the eight interrelated domains of the QoL conceptual framework originally described by.Data were collected from 602 adults with moderate levels of ID and respective proxies, who completed the self-report and the report by other scales, respectively. Five measurement models were tested through confirmatory factor analysis.The eight correlated dimension model showed the best fit to the data. Reliability and convergent validity of the indicators were satisfactory in both versions of the scale (self-report and proxy report).This study contributes to research on QoL measurement by providing the first empirical evidence regarding the dimensionality, internal structure and psychometric properties of the Colombian version of the INICO-FEAPS scale. Moreover, the study presents the first adaptation of a specific QoL scale for people with ID in Colombia, which may in the future be useful for implementing evidence-based practices and developing person-centred support plans.

Recent literature has suggested that relaxation activities can reduce the challenging behaviours of people with intellectual disabilities, particularly in severe and profound grades, due to the counteractive effect of muscle relaxation on emotional frustration or psychological distress. Despite having inconclusive evidence, multisensory environment (MSE) and massage therapy (MT) are the commonly used approaches to relaxation among these people. However, these two approaches have not yet practised or tested in combination for reducing these people's challenging behaviours.A preliminary clinical efficacy trial was conducted to evaluate the effects of MT, MSE and their combined use for residents with intellectual disabilities in a long-term care facility on reducing their challenging behaviours. Eligible residents were recruited and randomly assigned to one of the four study groups (n = 11-12 per group), that is, MT in MSE, MSE alone, MT alone or usual care, for a 10-week intervention after a 1-month washout period. Outcome measures, including the Behaviour Problem Inventory, pulse and respiration rates, Behaviour Checklist and Alertness Observation Checklist, were assessed at recruitment and immediately following the interventions.A total of 42 participants (17 men and 25 women) completed the study. There were no significant differences in frequency and severity of challenging behaviours and most of the outcome measures between the four groups at post-test. Nevertheless, there were statistical significant differences on the active and inactive state (Alertness Observation Checklist) between the three treatment and control groups. Many participants in the three treatment groups changed from an active to inactive state (i.e. reduced activity levels) throughout the interventions, especially the MT in MSE. Such inactivity might suggest the participants' brief exhaustion followed by a period of alertness during the treatment activities. But their attention span and social contact to the immediate environment could still be maintained.Participants of MT in multisensory environment acquired more inactive state than the other study groups. This inactive state indicates a state of 'passive alertness', which is more likely in a relaxing manner.

To examine dementia characteristics, age at onset and associated co-morbidities in persons with Down syndrome.A total of 77 people with Down syndrome aged 35 years and older were followed up from 1996 to 2015. The diagnosis of dementia was established using the modified ICD 10 Criteria and a combination of objective and informant-based tests. Cognitive tests included the Test for Severe Impairment and the Down Syndrome Mental Status Examination; adaptive behaviour was measured using the Daily Living Skills Questionnaire, and data from the Dementia Questionnaire for People with Intellectual Disabilities have been available since 2005.Over the 20-year period, 97.4% (75 of 77) persons developed dementia with a mean age of dementia diagnosis of 55 years (SD = 7.1, median = 56 years). Clinical dementia was associated with cognitive and function decline and seizure activity. Risk for dementia increased from 23% in those aged 50 years to 80% in those aged 65 years and above. There were no differences by level of ID.The previously reported high risk levels for dementia among people with Down syndrome were confirmed in this data as was the relationship with late onset epilepsy. The value of the instruments utilised in tracking decline and helping to confirm diagnosis is further highlighted.

People with intellectual disabilities, if convicted of offences, may be sentenced to prison, but little is known about their life when they are released.This study followed up men with intellectual disabilities who were leaving prisons in England.The men were hard to contact, but 38 men were interviewed, on average 10 weeks after leaving prison. The men were living in a variety of situations and often were very under-occupied, with limited social networks. A total of 70% were above the clinical cut-off for anxiety, and 59.5% were above the clinical cut-off for depression. The men were receiving little support in the community, and many had been reinterviewed by police.Community teams need to provide better support to this very vulnerable group.

There are few valid and reliable psychological therapy outcome measures available for use with people with intellectual disabilities (ID). The current study involved the development of a new scale; the Psychological Therapies Outcome Scale - Intellectual Disabilities (PTOS-ID), and the examination of its validity and internal consistency.The PTOS-ID was administered to 175 people who have ID accessing specialist ID services. The construct validity of the scale was investigated through exploratory factor analysis, concurrent validity through comparison with the Brief Symptom Inventory and internal reliability through internal consistency analysis.Three factors emerged from the principal components analysis with high levels of internal consistency: (1) anger and mood (α = 0.82); (2) positive well-being (α = 0.81); and (3) anxiety (α = 0.76). Factors (1) and (2) were combined to measure psychological distress (α = 0.85), which correlated strongly with the Global Severity Index of the Brief Symptom Inventory (r = 0.85).This preliminary study suggests that the PTOS-ID is a psychometrically robust measure of psychological distress and psychological well-being that can be used with people with ID. Further research is required to assess its reliability and ability to detect change.

In the UK, the closure of 'long-stay' hospitals was accompanied by the development of community teams (CTs) to support people with intellectual disabilities (IDs) to live in community settings. The self-reported experiences of staff working in such teams have been neglected.Focusing on a single county-wide service, comprising five multi-disciplinary and inter-agency CTs, we measured perceptions among the health care and care management Team members of (1) their personal well-being; (2) the functioning of their team; and (3) the organisation's commitment to quality, and culture.Almost three-quarters of the questionnaires were returned (73/101; 72%). The scores of health care practitioners and care managers were very similar: (1) the MBI scores of more than half the respondents were 'of concern'; (2) similarly, almost four in ten respondents' scores on the Vision scale of the TCI were 'of concern'; (3) the perceived commitment to quality (QIIS-II Part 2) was uncertain; and (4) the organisational culture (QIIS-II, Part 1) was viewed as primarily hierarchical.The perceived absence of a vision for the service, combined with a dominant culture viewed by its members as strongly focussed on bureaucracy and process, potentially compromises the ability of these CTs to respond proactively to the needs of people with IDs. Given the changes in legislation, policy and practice that have taken place since CTs were established, it would be timely to revisit their role and purpose.

The aim of this study is to explore the prevalence and influencing factors of metabolic syndrome (MetS) in people with intellectual disabilities (IDs) and behavioural problems in a Dutch special healthcare institution.This observational study was conducted from medical records of physical examinations, laboratory results, medication (history), ethnicity and length of stay, as well as from questionnaires about lifestyle and smoking habits. MetS was defined by using the criteria of the 2009 consensus guidelines. The questions in this study were about the prevalence of MetS over a 1-year period and exploration of the differences between the people with and without MetS to determine the factors associated with it.The overall prevalence of MetS in the selected population of people with IDs and behavioural problems was 46%. The factors 'use of conventional antipsychotics', 'age', and a ' low nutrition score' increased the risk of developing MetS. Together, these variables determine 19% of the variance in the incidence of MetS.The study indicates a firm prevalence of MetS in a vulnerable population, whereby a minority of contributing factors was determined. Professionals should be particularly alert during the provision of antipsychotics, diet and exercise habits to prevent MetS when treating people with IDs and behavioural problems, and further studies are needed to explore the factors that contribute to the nascence and prevalence of MetS.

The basic human right of autonomy is underpinned by the ability to practice decision-making. The rights of people with disabilities to engage in autonomous decision-making are promoted as best practice and includes decisions around health and self-care. Little is known about autonomy in the field of long-term condition management. This paper explores how people with intellectual disabilities (ID) and their support workers experience and practice autonomy in relation to the management of diabetes.Semi-structured interviews were completed in residential and independent living settings with people living with an ID and type 1 (N = 8) or type 2 (N = 6) diabetes and their support workers (N = 17). The participant with ID's support worker was present as requested; however, the interviews were run separately with each participant rather than jointly. Thematic analysis was undertaken, and a constructivist lens informed both data collection and analysis.The analysis revealed a strong process of negotiated autonomy between people with ID and their support workers in relation to the daily management of diabetes. During times of transition, roles in relation to diabetes management were renegotiated, and the promotion of autonomy was prefaced within the context of risk and client safety. Goals to increase independence were drivers for negotiating greater autonomy.The successful negotiation of autonomy in relation to diabetes illustrates the potential for people with ID to play a key role in the management of long-term health conditions. The study highlights the primacy of developing decision-making skills among people with ID. Promoting opportunities for decision-making and an ethos of supported decision-making through person-centred planning are all vital in working towards enhancing autonomy.

People with intellectual disabilities have very high rates of mental ill health. Standard psychosocial interventions designed for the general population may not be accessible for people with mild intellectual disabilities, and drug usage tends to be modified - 'start low and go slow'. This systematic review aims to synthesise the evidence on psychological, pharmacological and electroconvulsive therapy (ECT) interventions for adults with mild intellectual disabilities and mental ill health.PRISMA guidelines were followed. Medline, Embase, PsycINFO and CINAHL were searched, as was grey literature and reference lists of selected papers. Papers were selected based on pre-defined inclusion and exclusion criteria. A proportion of papers were double reviewed. Data was extracted using a structured table.PROSPERO 2015:CRD42015015218.Initially, 18 949 records were identified. Sixteen studies were finally selected for inclusion; seven on psychological therapies, two on group exercise, five on antipsychotics and two on antidepressants. They do not provide definitive evidence for effectiveness of psychosocial interventions, nor address whether starting low and going slow is wise, or causes sub-optimum therapy.There are few evidence-based interventions for people with mild intellectual disabilities and mental ill-health; existing literature is limited in quantity and quality. Group cognitive-behavioural therapies have some supporting evidence - however, further randomised control trials are required, with longer-term follow-up, and larger sample sizes.

Physicians are increasingly confronted with people with intellectual disabilities (ID) who are facing life-threatening diseases. We aimed to explore when and based on which information sources and signals physicians recognised that a patient with ID would die in the foreseeable future. Insights may help in identifying patients in need of palliative care.In this study, 81 physicians for people with ID and 16 general practitioners completed a retrospective survey about their last case of a patient with ID with a non-sudden death.More than 20% of all physicians foresaw death not until the last week of life. In 30% of all patients, the physician did not discuss the start of the palliative care phase until the last week. The most reported information sources based on which physicians foresaw death were the physicians themselves and professional caregivers. We found 40 different signals that lead to physicians' foreseeing death. These were not only medical signals but also behavioural and physical signals.Results indicate that the physicians' ability to foresee death is a result of a process of growing awareness in which multiple signals from different information sources converge. This demands continuous multi-disciplinary communication because people involved have their own unique interactions with the patient and can therefore contribute to a growing and timely awareness of patients' death in the future.

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.Electronic and hand searches identified seven studies for inclusion (N = 169). Standardised 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).A large effect size (weighted d = 0.923, confidence interval: 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, confidence interval: 0.351 to 0.705) indicated a 53% improvement compared with 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.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.

Several factors that correlate with the onset or continuation of challenging behaviour are mentioned in research. These are factors related to persons with ID, but also to direct support professionals and the context. Although many of these factors seem to affect the onset or continuation of challenging behaviour in people with ID in general, results are often inconclusive and have little focus on people with profound intellectual and multiple disabilities (PIMD). The present study aimed to assess the extent to which known factors related to challenging behaviour are also applicable to a group of 198 people with PIMD.To determine which factors were associated with challenging behaviour, univariate analyses on associations between known risk factors and challenging behaviour were conducted. The associated factors were then subject to a regression analysis to determine the extent to which they explain the prevalence of challenging behaviour and can thus be seen as factors associated with challenging behaviour.The results show that, in particular, factors concerning the personal characteristics of people with PIMD, such as sleeping problems and auditory problems, were related to the variance in mean frequency of challenging behaviour. Only one factor related to the direct support professionals was found: when these professionals had been offered training on the subject of challenging behaviour in people with intellectual disabilities in general, they identified significantly more withdrawn behaviour. We found no contextual factors related to challenging behaviour.These findings are generally consistent with findings reported in other studies, especially concerning the personal characteristics of people with PIMD. Further research should focus on the effects of providing safe auditory environments and appropriate sleep schedules for people with PIMD on the occurrence of challenging behaviour.

Various studies have found that direct support professionals (DSPs) play an important role in determining the degree to which people with intellectual disabilities (ID) are included in society. However, less research has been conducted on the psychological processes that may influence the behavioural intentions of DSPs to actually engage with and invest effort in supporting their clients' inclusion. Five possible psychological variables are identified in the literature: attitudes, social norms, experienced competencies, identity and meta-evaluation. In our research, we tested whether these processes influence the (intended) efforts DSPs make to facilitate their clients' inclusion.A structured questionnaire was sent to 927 DSPs working in one of three different locations (an ordinary non-segregated setting, a reversed non-segregated setting and a residential facility). Of these, 336 DSPs completed the questionnaire.Several variables revealed differences between the three locations, specifically in efforts to facilitate inclusion, attitudes, social norms, experienced competencies and professional identity. Looking at the overall means, we found (relatively) high scores for the experienced competencies, role identity and meta-evaluation. In contrast, the means were relatively negative regarding the DSPs' attitudes to inclusion and their assumed social norms.Direct support professionals' efforts to facilitate inclusion depend on their attitude towards inclusion, the experienced competencies, their role identity, the DSPs' meta-evaluation and, indirectly through attitudes, also on the assumed social norms of the relevant stakeholders. Organizations responsible for supporting people with ID and which may want their DSPs to make greater efforts to facilitate inclusion should pay attention to these psychological variables.

Social difficulties are often noted among people with intellectual disabilities. Children and adults with 22q.11.2 deletion syndrome (22q11DS) often have poorer social competence as well as poorer performance on measures of executive and social-cognitive skills compared with typically developing young people. However, the relationship between social functioning and more basic processes of social cognition and executive functioning are not well understood in 22q11DS. The present study examined the relationship between social-cognitive measures of emotion attribution and theory of mind with executive functioning and their contribution to social competence in 22q11DS.The present cross-sectional study measured social cognition and executive performance of 24 adolescents with 22q11DS compared with 27 age-matched typically developing controls. Social cognition was tested using the emotion attribution task (EAT) and a picture sequencing task (PST), which tested mentalising (false-belief), sequencing, cause and effect, and inhibition. Executive functioning was assessed using computerised versions of the Tower of London task and working memory measures of spatial and non-spatial ability. Social competence was also assessed using the parent-reported Strengths and Difficulties Questionnaire.Adolescents with 22q11DS showed impaired false-belief, emotion attribution and executive functioning compared with typically developing control participants. Poorer performance was reported on all story types in the PST, although, patterns of errors and response times across story types were similar in both groups. General sequencing ability was the strongest predictor of false-belief, and performance on the false-belief task predicted emotion attribution accuracy. Intellectual functioning, rather than theory of mind or executive functioning, predicted social competence in 22q11DS.Performance on social-cognitive tasks of theory of mind indicate evidence of a general underlying dysfunction in 22q11DS that includes executive ability to understand cause and effect, to logically reason about social scenarios and also to inhibit responses to salient, but misleading cues. However, general intellectual ability is closely related to actual social competence suggesting that a generalised intellectual deficit coupled with more specific executive impairments may best explain poor social cognition in 22q11DS.

An increasing number of people with intellectual disabilities (ID) are at risk of developing age-related disorders such as dementia because of a dramatic increase in life expectancy in this population in the recent years. There is no validated dementia screening instrument for Chinese people with ID. The Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) was reported to be a valid, user-friendly, easy-to-use observer-rated instrument. It was developed in the UK and has good psychometric properties. Validation of a Chinese version of the DSQIID will facilitate its application among the Chinese population.The DSQIID was translated into the Chinese version (DSQIID-CV). By purposive sampling, service users with ID aged 40 years or over were recruited through two large centres serving adults with ID in Hong Kong. Carers who had taken care of the participants continuously for the past 6 months were invited to complete the DSQIID-CV. All participants were examined by qualified psychiatrists to determine the presence or absence of dementia.Two hundred people with ID whose age ranged between 40 and 73 years (mean 51 years, SD=7.34 years) were recruited to the study. A clinical diagnosis of dementia was established in 13 participants. An overall total score of 22 as a screening cut-off provided the optimum levels of specificity (0.995) and sensitivity (0.923). The DSQIID-CV showed good internal consistency (alpha=0.945) for all its 53 items, and excellent test-retest reliability (0.978, n=46) and inter-rater reliability (1.000, n=47). Exploratory factor analysis resulted in a four-factor solution explaining 45% of the total variance.The DSQIID-CV is shown to have robust psychometric properties. It is the first valid and reliable dementia screening instrument for Chinese adults with ID.

It is difficult to diagnose autism spectrum disorder (ASD) in people with a combination of intellectual and sensory disabilities because of overlap in behaviour. The ASD typical behaviours of people with combined intellectual and sensory disabilities are often caused by their disabilities and not by ASD. Current diagnostic tools are inadequate to differentiate between people with and without ASD when they have these combined disabilities, because tools lack norms for this population or are subjective, indirect or unable to adapt to the variety of disabilities that these people may have. Because giving a correct diagnosis is necessary for treatment and support, a new observational tool was developed to diagnose ASD in people with multiple disabilities, observation of autism in people with sensory and intellectual disabilities (OASID).Observation of autism in people with sensory and intellectual disabilities was tested on 18 participants with moderate to profound intellectual disabilities, one or dual sensory impairment, with and without ASD. Two independent experts diagnosed these participants as well in order to test the psychometric properties and differentiating abilities of OASID.Observation of autism in people with sensory and intellectual disabilities showed high inter-rater reliability, internal consistency of scales and content and construct validity. OASID could differentiate people with and without ASD without overlap.Observation of autism in people with sensory and intellectual disabilities could differentiate people with intellectual disabilities combined with sensory impairments, who clearly had or did not have signs of ASD. People with unclear signs of ADS scored in between those two groups with regard to their OASID scores. Psychometric properties of OASID are promising.

There is some evidence that people with intellectual disabilities (IDs) living in the community are exposed to the same risks of alcohol use as the rest of the population. The aims of this project were to investigate the prevalence of alcohol use disorders in patients with ID known to a psychiatric community specialist team, and to explore appropriate screening tools and any relationship between alcohol use disorders and mental health co-morbidities.A random sample of 40 patients was recruited and interviewed using CAGE and Alcohol Use Disorders Identification Test (AUDIT) to assess alcohol use. Information on physical and mental health was also collected.One in five patients was positive on CAGE (20%) and AUDIT (22.5%). Significantly more of those had a history of mental illness compared with those who were negative. Thirty per cent of the total sample had been diagnosed with at least one health condition, which clinical notes failed to report. In addition two out of three of those positive on CAGE or AUDIT were smokers.The study suggests that alcohol use disorders seem to be a hidden problem within the ID population, existing alongside multiple physical and mental health needs.