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Background People with intellectual disabilities (IDs) may be at increased risk of developing periodontal diseases and dental caries due to poor oral hygiene. Our aim was to investigate motor proficiency factors associated with presence of visible plaque and gingival bleeding in people with IDs. We were particularly interested in the level of dependence, manual coordination and fine manual control of people with ID, as well as the level of exhaustion of the primary caregiver. Methods In this cross-sectional study, 299 people with ID were evaluated for oral hygiene using the simplified Visible Plaque Index and for gum inflammation using the Gingival Bleeding Index. The Bruininks-Oseretsky Motor Proficiency Test assessed motor proficiency through fine manual control (fine motor integration and fine motor precision) and manual coordination (manual dexterity and upper limb coordination). The level of dependence was assessed by the Katz dependency index, and the caregiver was tested for exhaustion using the fatigue severity scale. Prevalence ratios [and 95% confidence intervals (CI)] were calculated using crude and adjusted Poisson regression with robust variance. Results The exhaustion of the caregiver was associated positively to visible plaque [prevalence ratio (PR) = 1.36; 95% CI 1.06-1.65]. For gingival bleeding, people with IDs that had better fine motor integration (PR = 0.49; 95% CI 0.33-0.75) and precision (PR = 0.50; 95% CI 0.26-0.94), as well as manual dexterity (PR = 0.62, 95% CI 0.49-0.77), presented better results. Conclusion Poor oral hygiene and gum inflammation were associated with motor proficiency of people with IDs and caregivers' exhaustion. Interventions to improve the oral health of people with IDs should take into account such conditions.

Background There is evidence that psychotropic medications are overprescribed and overused to manage behaviours of concern for people with intellectual disabilities. Disability support workers and support staff lack education and training on the administration and safety of psychotropic medication use. This study aimed to test the applicability and preliminary efficacy of SPECTROM, an education programme developed in the UK, in an Australian context. Methods The training comprises two parts: Module 1 encompasses psychotropic medications, their use and side effects. Module 2 focuses on non-pharmacological interventions for supporting people with behaviours of concern. Thirty-three participants attended the training course and completed pre-training and post-training surveys on the Psychotropic Knowledge Questionnaire and Management of Aggression and Violence Attitude Scale-Revised at four time points: pre-training, 2 weeks, 3 months and 5 months post-training. Results Psychotropic Knowledge Questionnaire scores showed statistically significant post-training improvement at all post-training time points (P < 0.05). Management of Aggression and Violence Attitude Scale-Revised scores were high at pre-training and did not change significantly at any of the post-training survey time points. A 2-week post-training feedback questionnaire reported 80% agreement that the training programme was appropriate, useful and valid. Only 36% of participants completed questionnaires at all time points. Conclusions SPECTROM training increased staff knowledge of psychotropic medications, yet loss of participants was high. Further refinement of the applicability of the training for the Australian context and evaluation of the feasibility of implementation, clinical and cost-effectiveness of the programme are required.

Background: \ud The promotion of physical activity and the decrease of inactivity and sedentary behaviour are crucial for a healthy lifestyle and positive quality of life. People with intellectual disabilities are at increased risk of inactivity and sedentary behaviour. Therefore, it is important to increase their physical activity by implementing physical activity guidelines in their daily life. Professional direct care providers can play a decisive role in supporting people with intellectual disabilities to participate in physical activity, but the engagement of direct care providers with this role may be reflective of their own attitudes and beliefs towards physical activity. Therefore, the link between the implementation of current physical activity guidelines for people with intellectual disabilities and direct care providers' own beliefs and behaviour with regard to physical activity is investigated.\ud \ud Method: \ud A total of 104 direct care providers completed self‐reported questionnaires about their own physical activity behaviour (IPAQ‐SF), recommendations for people with intellectual disabilities (adaption of EMIQ‐HP) and questions regarding global physical activity guidelines. They were also asked about potential barriers and facilitators for the recommendation of physical activity in open‐ended questions. \ud \ud Results: \ud Personal physical activity behaviour is related to the recommended physical activity for people with intellectual disabilities (moderate‐to‐vigorous physical activity: r s = 0.408, P = 0.005). However, recommended physical activity behaviour for people with intellectual disabilities is significantly lower than direct care providers' own physical activity behaviour (P < 0.001). 47.1% of the respondents recommended people with intellectual disabilities to participate in less than the 150 min of moderate intensity physical activity per week for that is recommended in global physical activity guidelines. \ud \ud Conclusion: \ud Direct care providers may hold stereotypical views and insecurities about the potential harms associated with people with intellectual disabilities participating in physical activity. Therefore, the dissemination of physical activity recommendations for people with intellectual disabilities should be a major target for health professionals, social workers and scientists to address direct care providers' concerns. Furthermore, we need to emphasise the benefits of regular physical activity to professional direct care providers and directly to people with intellectual disabilities.

People with intellectual disability (ID) are a vulnerable group in our society; many of them depend on other people for assistance in their everyday lives. Compared with the general population, people with ID have poorer general health and, therefore, need more healthcare services and use more medicines. The aim of this study is to define the population of all Finnish people with ID using administrative data and to compare their medicine use and expenditure on medicines to those of the age-matched and sex-matched controls.People with ID and their age-matched and sex-matched controls (1:1) were extracted from nationwide healthcare and social allowance registers. Administrative register data on all prescription medicine purchases in 2019 were used to determine the prevalence of medicine use in both groups on a general level and by medicine categories. The differences in the prevalence of medicine use between the two groups were analysed using the logistic regression model. In addition, we studied the total expenditure on reimbursable medicine purchases covered by the National Health Insurance between people with ID and control group.The subpopulation of people with ID consisted 37 196 individuals, of whom 82.7% purchased prescription medicines in 2019. The corresponding share of individuals purchasing prescription medicines in the control group was 70.3%. The differences in the prevalence of medicine use between the two populations were highest in the younger age groups (0-6, 7-12 and 13-17). In the study population, 28.1% (OR = 12.28; 95% CI: 11.54-13.07) of the people used antipsychotics, making it the most used medicine category in people with ID. In the control group, 3.3% of people used antipsychotics. Compared with the control group, the use of antiepileptics, drugs for constipation, mineral supplements and anxiolytics was four to seven times higher among people with ID. Furthermore, the median expenditure on medicine use among people with ID was four times higher than in the control group.Compared with the control group, people with ID used more medicines, especially psychotropics, and their expenditure on medicine use was higher.

Background Advances in theoretical frameworks of self-determination require the development of new assessment instruments. This study examines the dimensional structure of a self-determination scale and analyses the factorial invariance of its measurement across age and gender. Method The AUTODDIS Scale was used to assess the self-determination of 541 people with intellectual disabilities aged from 11 to 40. Results Different models (correlational and hierarchical structures) of the scale were tested. The correlational model obtained from the exploratory structural equation model approach provided the best fit for the data. The results also supported measurement invariance across youths (aged 11 to 21 years) and adults (aged 21 to 40 years) and across genders. Conclusions This study contributes to international research on self-determination and the development of assessment tools in this field, offering a better understanding of this multifaceted and complex construct. The results provide construct validity evidence regarding a new measurement tool tested across people aged 11 to 40, using information from third parties. However, further research is needed to explore the best ways to understand and assess the different factors related to self-determination.

Contains fulltext : 225896.pdf (Publisher’s version ) (Open Access) BACKGROUND: Data on the development of Covid-19 among people with intellectual disabilities (IDs) are scarce and it is uncertain to what extent general population data applies to people with ID. To give an indication of possible implications, this study investigated excess mortality patterns during a previous influenza epidemic. METHODS: Using Dutch population and mortality registers, a historical cohort study was designed to compare mortality during the 2017-2018 influenza epidemic with mortality in the same period in the three previous years. People with ID were identified by entitlements to residential ID-care services as retrieved from a national database. RESULTS: Data covered the entire adult Dutch population (12.6 million; GenPop), of which 91 064 individuals were identified with an ID. During the influenza epidemic, mortality among people with ID increased almost three times as much than in the GenPop (15.2% vs. 5.4%), and more among male individuals with ID (+19.5%) than among female individuals with ID (+10.6%), as compared with baseline. In both cohorts, comparable increases in mortality within older age groups and due to respiratory causes were seen. Particularly in the ID-cohort, excess deaths also occurred in younger age groups, due to endocrine diseases and ID-specific causes. CONCLUSIONS: During the 2017-2018 influenza epidemic, excess mortality among people with ID was three times higher than in the general Dutch population, appeared more often at young age and with a broader range of underlying causes. These findings suggest that a pandemic may disproportionally affect people with ID while population data may not immediately raise warnings. Early detection of diverging patterns and faster implementation of tailored strategies therefore require collection of good quality data.

Background A preponderance of behavioural symptoms is assumed to be the main difference in the manifestation of symptoms of post‐traumatic stress disorder (PTSD) in people with intellectual disability (ID). However, no study so far has assessed the relationship between challenging behaviour (CB) and PTSD. The present study aims to explore this relationship by exploring whether CB is directly related to trauma exposure or whether this relationship is mediated through core symptoms of PTSD. Methods Trauma exposure and current symptoms of PTSD were assessed in 43 adults with mild to moderate ID. Parallel versions were administered to 43 caregivers, including the Aberrant Behaviour Checklist to measure CB. Bayesian mediation analyses were conducted using self‐rated and informant‐rated data. Results The self‐report data showed no associations of CB with trauma exposure or PTSD symptoms. The association between informant‐rated trauma exposure and irritability was mediated by severity and frequency of PTSD symptoms. The associations between informant‐reported trauma exposure and the Aberrant Behaviour Checklist subscales hyperactivity and inappropriate speech were mediated by PTSD symptom severity. Conclusions The relationship between trauma exposure and CB was mediated by PTSD symptoms. PTSD core symptoms should be considered as underlying causes of CB, highlighting the necessity to explore trauma biography and symptoms of PTSD. The improvement of self‐report assessment in people with ID is an important task for future studies.

BackgroundThe annual health check (AHC) programme, as part of a Directed Enhanced Service, offers an incentive to general practitioners in England to conduct health checks for people with intellectual disabilities (IDs). The aim of this analysis was to estimate the impact on health care costs of AHCs in primary care to the National Health Service in England by comparing adults with ID who did or did not have AHCs using data obtained from The Health Improvement Network.MethodsTwo hundred eight records of people with ID from The Health Improvement Network database were analysed. Baseline health care resource use was captured at the time the first AHC was recorded (i.e. index date), or the earliest date after 1 April 2008 for those without an AHC. We examined the volume of resource use and associated costs that occurred at the time AHCs were performed, as well as before and after the index date. We then estimated the impact of AHCs on health care costs.ResultsThe average cost of AHC was estimated at £142.57 (95%CI £135.41 to £149.74). Primary, community and secondary health care costs increased significantly after the index date in the no AHC group owing to higher increase in resource utilisation. Regression analysis showed that the expected health care cost for those who have an AHC is 56% higher than for those who did not have an AHC. Age and gender were also associated with increase in expected health care cost.ConclusionThe level of resource utilisation increased in both (AHC and no AHC) groups after the index date. Although the level of resource use before index date was lower in the no AHC group, it increased after the index date up to almost reaching the level of resource utilisation in the AHC group. Further research is needed to explore if the AHCs are effective in reducing health inequalities.

BACKGROUND People with intellectual disabilities (IDs) have very high rates of osteoporosis and fractures, to which their widespread vitamin D deficiency and other factors could contribute. We aimed to assess in people with IDs previously treated for vitamin D deficiency (1) long-term adherence to vitamin D supplementation and (2) bone mineral density (BMD), as an indicator for risk of fractures, according to vitamin D supplementation and other factors. METHOD We recorded height, weight, medical, pharmacological, dietary and lifestyle assessment. Blood sample were taken for vitamin D and related analytes. dual-energy X-ray absorptiometry for BMD was performed. RESULTS Of 51 study participants (mean [standard deviation, SD] age 51.5 [13.6] years, 57% male), 41 (80.4%) were taking vitamin D and 10 were not. Mean [SD] serum vitamin D was 81.3 [21.3] vs. 25.2 [10.2] nmol/L (P

Introduction Providing safe, high-quality admitted-patient care for people with intellectual disabilities (IDs) requires consideration for their special needs particularly in relation to communication and consent. To make allowance for these special requirements, it would be helpful for hospitals to know how often they are likely to arise. This study set out to identify the amount and patterns of use of acute, non-psychiatric hospital admitted-patient care in England by people with ID. Patterns are considered in relation to clinical specialties, modes of admission (emergency or planned) and life stages (children and young people, working age and older adults). In each case, patterns for people with ID are compared with patterns for those without. Methods Descriptive observational study using a major general practitioner (GP) research database (Clinical Practice Research Datalink GOLD) linked to routine national statistical records of admitted-patient care. Results Overall people identified by their GP as having ID had higher rates of admitted-patient care episodes and longer durations of stay than those without. Differences varied considerably between clinical specialties with rates more elevated in medical and paediatric than surgical specialties. Admitted-patient care rates for women with ID in obstetrics and gynaecology were lower than for other women, while rates for admitted-patient dental care were much higher for both men and women with ID. In an average English health administrative area with a local population of 250 000 people, at any time, there are likely to be approximately 670 people receiving acute admitted-patient care. Approximately six of these are likely to have been identified by their GP as having ID. At 0.9% of hospital in-patients, this is just under twice the proportion in the population. Conclusion and implications Our figures are likely to be an underestimate as GP identification of people with ID is known to be far from complete. However, they indicate that the number of people with ID in acute hospital settings is likely to be substantially more than a recent survey of English health services indicated they were aware of. The study is intended to help guide expectations for acute hospitals seeking to audit the completeness of their identification of people with ID and to indicate their likely distribution between clinical specialties.

Background Research has shown Australian group homes, and supported living options, fail to support people with intellectual disabilities (IDs) to develop social connections. This pilot study evaluates the effectiveness of a visiting dog walking program to facilitate encounters with other community members. Method Sixteen adults with IDs were assigned to one of two groups, matched on key characteristics. Group 1 had 14, 1-hour outings in the community with a dog and their handler; Group 2 had 14 outings with a handler alone, followed by an additional five outings with a handler and a dog. Within and between group differences were analysed according to number of encounters when a dog was present and absent. Qualitative data provided insights into the nature of these encounters. Results The number of encounters was significantly higher when a dog was present than when participants went out into the community with a handler alone. This pattern was reflected in the qualitative data, which also suggested the presence of a dog helped to break social norms about speaking to strangers and discourage disrespect towards people with IDs. Conclusions A dog walking program has the potential to encourage convivial encounters, which in the long term could be catalysts to help people with IDs build social connections in their communities; this should be further explored.

Background The World Health Organisation has launched a programme to promote Global Cooperation on Assistive Technology. Its aim is to increase access to high-quality affordable assistive products (AP) for everybody in need. People with intellectual disabilities (ID) are a specific group that could benefit from AP, but use less AP compared to their non-intellectual disabled peers. Method A systematic literature search was carried out to identify barriers and potential facilitators for access to AP for people with ID globally. The search strategy terms were ‘Intellectual Disability’ and ‘Assistive Technology’ with the following electronic literature databases PubMed, Embase, ASSIA, Web of Science, Medline, CINAHL complete, PsycInfo, Scopus and ERIC. The quality and relevance of the studies were assessed. Factors associated with access were identified thematically, categorised into barriers and facilitators and mapped into themes. Results In all, 22 key studies were retrieved, describing 77 barriers and 56 facilitators. The most frequently reported barriers were related to lack of funding and cost of AP, lack of awareness about AP and inadequate assessment. An increase of knowledge and awareness about AP and the need of AP for people with ID were most often extracted as factors that could potentially facilitate access. Conclusions This review proposes actions linked to the barriers and facilitators that have a particular importance for people with ID to access AP. Yet, only limited research is available describing factors that influence access to AP for people with ID in low and middle income countries and rural areas.

Background: To optimise care and support for people with intellectual disabilities (ID), sharing and application of knowledge is a precondition. In healthcare in general, there is a body of knowledge on bridging the ‘know-do-gap’. However, it is not known to what extent the identified barriers and facilitators to knowledge sharing and application also hold for the care and support of people with ID, due to its specific characteristics including long-term care. Therefore, we conducted a systematic review to identify which organisational factors are enabling and/or disabling in stimulating the sharing and application of knowledge in the care and support of people with ID. Method: A systematic review was conducted using five electronic databases of relevant articles published in English between January 2000 and December 2015. During each phase of selection and analysis a minimum of two independent reviewers assessed all articles according to PRISMA guidelines. Results: In total 2,256 articles were retrieved, of which 19 articles met our inclusion criteria. All organisational factors retrieved from these articles were categorised into three main clusters: (1) characteristics of the intervention (factors related to the tools and processes by which the method was implemented); (2) factors related to people (both at an individual and group level); and, (3) factors related to the organisational context (both material factors (office arrangements and ICT system, resources, time and organisation) and immaterial factors (training, staff, size of team)). Conclusion: Overall analyses of the retrieved factors suggest that they are related to each other through the preconditional role of management (i.e., practice leadership) and the key role of professionals (i.e. (in)ability to fulfill new roles).

Background Prejudices and negative attitudes towards intellectual disabilities (IDs) may hinder social inclusion of ID individuals, limiting their well-being. This study investigated the psychometric characteristics of the Italian Modern and Classical Prejudices Scale (MCPS-IT) towards people with ID and the effects of gender, age and socio-economic status (SES) on prejudices. Method The MCPS-IT was administered to 474 adults (69% women, age range 18-70 years, M = 33.13) in conjunction with a questionnaire evaluating socio-demographic information (SES), the contact and the education about ID people and the social dominance orientation. Results Results confirmed that Italian MCPS has a two-factor structure that measures in a reliable and valid way prejudice towards people with ID. Multivariate analyses of variance confirmed a weak gender difference in both scales and age differences in modern scale. No SES differences were found. Conclusion The Italian MCPS represents a valid scale that can be used to monitor the social context of people with ID.

Background Support staff of adults with intellectual disability (ID) play an important role in promoting independence in home and community settings. However, little is known about the types of behaviours staff should use to promote independence and instruments that assess such behaviour do not yet exist. The aim of this study was therefore to develop and initially validate a reliable questionnaire that measures the degree to which support staff display behaviours that promote independence in people with ID. Method The Leiden Independence Questionnaire for Support Staff (LIQSS) was constructed to measure the extent to which support staff promote independence in people with ID. The LIQSS was completed by 142 staff members working with people with ID. For the psychometric evaluation of the LIQSS, a principal component analysis was performed with an oblique rotation in all items. Next, the principal component analysis was performed with a forced three‐component extraction, and three sub‐scales were computed. To assess internal consistency, Cronbach's α was calculated for each of the sub‐scales. Results The LIQSS was found to consist of three internally consistent (Cronbach's α was respectively 0.92, 0.79 and 0.76) and meaningful components: (1) communication, agreements and coordination; (2) positive encouragement and tailoring; and (3) supporting independent performance. The final 22 items had factor loadings between 0.44 and 0.91 on their corresponding component and a minimal difference in loading to the other factors of 0.20. Conclusions The LIQSS appears to be an instrument with positive face validity and reliability (internal consistency) that assesses the degree to which support staff promote independence in people with ID. To increase the instrument's value for both scientific research and clinical practice, studies should focus on the further validation of the LIQSS.

Background Little is known about the population prevalence of co-occurring intellectual disabilities and autism, and its impact on general health status. The study aimed to investigate this, in comparison with the general population. Method Whole country data from Scotland's Census, 2011, were analysed. Descriptive statistics were generated; chi-squared tests were undertaken; and logistic regressions were undertaken both with the whole general population data, adjusted for age and gender, and within the population with co-occurring intellectual disabilities and autism. Results A total of 5709/5 295 403 (1.08/1000) people had co-occurring intellectual disabilities and autism; 2.58/1000 children/young people and 0.74/1000 adults. The peak reported prevalence was at age 10 years (3.78/1000); 66.0% were male. Their general health status was substantially poorer than for the rest of the population, more so for children/young people, and they had more limitations in their day-to-day activities. Co-occurring intellectual disabilities and autism had odds ratio = 48.8 (45.0-53.0) in statistically predicting poor health. Conclusion This is the first study to report the population prevalence of coexisting intellectual disabilities and autism, and the substantial influence this double disadvantage has on general health status, apparent across the entire life course. This highlights a group in need of wider recognition for whom resources should be focused on and planned for, informed by evidence. Staff in services for people with either of these conditions need to be trained, equipped, resourced and prepared to address the challenge of working for people with this duality. This is essential, to address these substantial health inequalities.

BACKGROUND There are different instruments to measure energy expenditure in general population, but we do not know whether these instruments can be used in people with intellectual disability. METHODS A sample of 33 participants was invited to wear a triaxial accelerometer during seven consecutive days. Energy expenditure was measured with the International Physical Activity Questionnaire Short Version (IPAQ-S) to gather data regarding the participant's descriptions of the physical activity performed. RESULTS Agreement between the accelerometers and IPAQ-S in terms of energy expenditure measurements was not reached (P > 0.05). A significant correlation was found between moderate metabolic equivalent of tasks measured with accelerometers and vigorous metabolic equivalent of tasks measured with the IPAQ-S (r = -0.351 [P = 0.045]). CONCLUSION The main conclusion of this study was a level of discrepancy between measurements taken using the IPAQ-S and the accelerometers in people with intellectual disability.

Background: Individuals with intellectual disability (ID) are at greater risk of exposure to traumatic life events compared with the non‐ID population. Yet no study to date has examined the role of multiple traumatisation and subsequent psychopathology in people with ID. The aim of this study was to explore the association between multiple traumatisation and subsequent mental health. Methods: A preliminary cross‐sectional study involving 33 participants with DSM‐5 post‐traumatic stress disorder completed self‐report questionnaires on exposure to traumatic life events and post‐traumatic stress disorder symptoms, anxiety, depression and general distress. Results: A proportion of 42.4% of the sample reported multiple traumatisation, including exposure to life events in both childhood and adulthood. Those who reported exposure to life events in childhood and adulthood reported significantly higher risk of harm, depression and general psychological distress compared with those who reported exposure to life events only in adulthood. Conclusions: Preliminary results indicate that more severe psychopathology is associated with multiple traumatisation in childhood and adulthood compared with trauma experienced solely in adulthood.

Background The transition to adulthood is a major developmental milestone; a time of self-discovery and increased independence. For young adults (YA) with intellectual disabilities (ID), however, this period is especially challenging. The increased incidence of mental health disorders in this population, such as depression and anxiety, make this transition even more difficult, increasing caregiver burden at a time when the young adult would traditionally be gaining independence. It is not clear, however, why YA with ID are more susceptible and what factors may predict mental health symptoms. Method Potential risk and protective factors (demographic variables, coping styles, sense of hopelessness, unmet achievement of adulthood milestones, self-reflection and insight) of anxiety and depression symptoms were assessed in 55 YA with ID and a sample of age-matched controls. Results Insight was the strongest predictor of anxiety (with gender in the controls) for YA with and without ID, with increased insight predicting fewer anxiety symptoms. However, YA with ID had significantly less insight than their aged-matched counterparts and significantly higher levels of anxiety. They were also less likely to have achieved traditional adulthood milestones. Maladaptive coping was the strongest predictor of depression for YA with ID. In comparison, both maladaptive coping and insight predicted depression in controls. More maladaptive coping predicted increased depressive symptoms in both populations, whilst increased insight predicted fewer depressive symptoms in controls. Conclusions Insight and maladaptive coping are potential targets in the treatment of anxiety and depression among YA with ID. Longitudinal intervention studies exploring the efficacy of such targeted programmes in reducing mental health symptoms and improving the transition to adulthood for these young people are recommended.

Background: Physical health needs of people with intellectual disabilities are often overlooked. Inadequate physical health skills (assessment, monitoring) of healthcare professionals working in intellectual disabilities is a barrier to equitable care. Recent reports have called for initiatives to improve training through quality improvement programmes. Aim: An integrative review was undertaken to 1) identify physical health training needs of healthcare professionals 2) identify challenges of implementing quality improvement skills training. Methods: Six electronic databases were searched (January 1990-March 2015) and included if they described the physical health assessment/monitoring skills of healthcare professionals and quality improvement programmes designed to impact the physical health of adults with intellectual disabilities. Articles were appraised using the Mixed Methods Appraisal Tool (MMAT). Results: 668 articles were identified, of which 14 were included in the review. Literature was sparse with none reporting training needs of healthcare professionals in intellectual disabilities. Identified training needs of mainstream healthcare professionals included physical assessment, communication, general and syndrome specific knowledge, and health promotion. Quality improvement studies were of limited quality, under evaluated and poorly reported. Lack of staff engagement, role confusion and sustainability were barriers to quality improvement implementation. Conclusion: Physical health skills of healthcare professionals are key to improving care for people with intellectual disabilities. However, quality improvement is poorly implemented in this area of practice. In order to better meet the needs of this group better implementation and evaluation of intellectual disabilities quality improvement programmes is required.

Background Most staff working in intellectual disability services will be confronted with people with intellectual disabilities who need support around death, dying and bereavement. Previous studies suggest that intellectual disability staff tend to protect clients from knowing about death and avoid communication about death. The aims of this study were to gain further insight into the individual, organisational and contextual factors that affect the communication of death-related bad news to people with intellectual disabilities by intellectual disability staff and to develop guidelines for services to enable appropriate communication with clients about death and dying. Method Semi-structured interviews were held with 20 social care staff working in intellectual disability residential or supported living services in London, who had supported a client affected by death-related bad news in the past 6 months. Results Staff found supporting people with intellectual disabilities around death and dying extremely difficult and tended to avoid communication about death. The following factors had a particularly strong influence on staff practice around communicating death-related bad news: fear and distress around death; life and work experience; and organisational culture. Staff attitudes to death communication had a stronger influence than their client's level of cognitive or communicative abilities. Managers were important role models. Conclusions Service managers should ensure not only that all their staff receive training in death, loss and communication but also that staff are enabled to reflect on their practice, through emotional support, supervision and team discussions. Future work should focus on the development and testing of strategies to enable intellectual disability staff to support their clients in the areas of dying, death and bereavement.

Background Sexual rights and sexuality are important aspects of quality of life, also for people with intellectual disabilities (IDs). However, providing support in this area to people with ID poses some challenges. In this study, the content of individual support plan (ISP) documents was analysed to determine the extent to which sexuality and sexual rights are addressed in part of the ISP documents. Method Content analysis was carried out on a sample of 187 ISP documents from seven different service provider organisations in the Netherlands. First, we conducted a lexical search using terms related to sexuality and sexual health. The retrieved segments were then analysed. Results A total of 159 ISP documents (85%) of 60 men and 99 women contained some reference to aspects of sexuality. However, these references were mostly descriptive and offered little guidance in terms of providing support. Moreover, these notations mostly described negative or problematic aspects of sexuality. References to sexual education, treatment, intervention programs or support strategies were rarely found in the ISP documents. Conclusions Although sexuality is addressed in most ISP documents, there is little information available about the provision of professional support in this area that would give people the opportunity to exert sexual rights. As sexuality and exerting sexual rights are important for people with ID as well as for other people, it is recommended that issues surrounding proactive sex education, shared decision-making and the implementation of sexual healthcare plans are addressed in the ISP.

Background The Psychiatric Assessment Schedule for Adult with Developmental Disability (PAS-ADD) is an international reference tool for the diagnosis and assessment of mental health problems and behavioural disorders among people with intellectual disabilities. Although the original PAS-ADD instrument has been validated in the Spanish language, the shorter PAS-ADD Checklist has yet not been validated. The aim of this study is to validate the PAS-ADD Checklist for the Spanish population. Methods The PAS-ADD Checklist Questionnaire was administered to 208 adults with intellectual disabilities at a vocational centre in Madrid, Spain. The psychometric analyses included internal consistency, inter-rater and test–retest reliability, Varimax rotation factor analysis for construct validity, criterion validity and feasibility. Results The Cronbach's alpha was 0.80 for the overall questionnaire and between 0.40 and 0.79 for the subscales. The Kappa coefficients for test–retest and inter-rater reliability were between 0.66 and 0.80. Varimax rotation factor analysis showed five well-defined factors. The Kappa coefficients for criterion validity were between 0.30 and 0.70. Feasibility was also good. Conclusions The PAS-ADD Checklist is a feasible and reliable instrument for carrying out initial assessment of the mental health status of adults with intellectual disabilities, referring cases to more specialised diagnosis and treatment.

Background Equal access to mainstream healthcare services for people with intellectual disabilities (ID) still requires attention. Although recent studies suggest that health professionals hold positive attitudes towards people with ID, stigmatising attitudes may influence their efforts to serve people with ID in community healthcare practice. To stimulate inclusion in mainstream healthcare services, this systematic review focussed on barriers in attitudes of mainstream health professionals towards people with ID. Method Five electronic databases were systematically searched and references in full text articles were checked for studies published in the English language between January 1994 and January 2016. A social–psychological triad of cognitive, affective and behavioural dimensions of stigmatising attitudes is used to structure and discuss the results. Results The literature search generated 2190 records with 30 studies that passed our exclusion criteria. Studies were mostly cross-sectional and of moderate quality. With respect to stigma, a lack of familiarity with and knowledge about people with ID was found. ID was considered as a stable condition not under personal control. Moreover, mainstream health professionals had either low or high expectations of the capabilities of people with ID. Professionals reported stress, lack of confidence, fear and anxiety, a tendency to treat people with ID differently and a lack of supporting autonomy. Conclusions Stigmatising attitudes towards people with ID appeared to be present among mainstream health professionals. This might affect the ongoing challenges regarding inclusion in mainstream healthcare services. To facilitate inclusion in mainstream healthcare services, it is recommended to include contact and collaboration with experts-by-experience in education programs of health professionals. Future research should progress beyond descriptive accounts of stigma towards exploring relationships between cognitive, affective and behavioural dimensions as pointers for intervention. Finally, inclusion would benefit from an understanding of ‘equal’ treatment that means reasonable adjustments instead of undifferentiated treatment.

Background Globally, diabetes is increasing with concerns about the impact on outcomes, including premature death and the costs associated with managing the condition. Research indicates that adults with intellectual disabilities (ID) are two to three times more likely to develop diabetes; however, there has been limited focus on diabetes service utilisation in this population. The aim of this study is to explore the perceptions and experiences of diabetes and ID practitioners. Methods A series of 1:1 semi-structured interviews were undertaken in one Scottish health service area. In total, 29 qualitative interviews were conducted: 10 with diabetes practitioners from primary and secondary care, 14 from ID services and 5 from community care services regarding diabetes service provision for this population. Thematic content analysis was undertaken to identify the themes and subthemes. Results Three main themes were identified: (1) enabling access to services to meet diabetes-related care needs of people with ID; (2) communication and service improvements between staff, patients and across services; and (3) providing person-centred diabetes care and developing adapted resources to increase patient self-care. Conclusions The findings of this study have important international implications in how diabetes practitioners plan and deliver services for people with ID and other vulnerable groups with limited cognitive ability and communication skills and difficulties in self-management. The findings highlight that access to diabetes education and adapted resources is needed, and if ‘reasonable adjustments’ are made to service provision and practice, people with ID can benefit from improved healthcare. Developing joint clinics to share knowledge and resources between diabetes and ID practitioners may improve service delivery and continuity of care, and thereby diminish the costs of not providing quality care.

Background The Improving Access to Psychological Therapies (IAPT) service was established to address common mental health problems among the English population in a timely manner in order to counter the social and economic disadvantage accompanying such difficulties. Using the concept of candidacy, we examined how the legitimacy of claims by people with intellectual disabilities to use this service is facilitated or impeded. Method We used a sequential mixed methods design. We completed 21 interviews with a range of stakeholders, including people with intellectual disabilities and their carers. Themes from the interviews were used to design an online survey questionnaire that was returned by 452 staff from IAPT and specialist intellectual disability services. Results Using the candidacy framework, we noted that eligibility and access to IAPT were achieved through dynamic and iterative processes of negotiation involving people with intellectual disabilities and their supporters on one side and IAPT staff and service structures on the other. Barriers and facilitators were apparent throughout the seven dimensions of candidacy (identification, navigation, permeability of services, appearances, adjudications, offers and resistance and operating conditions) and were linked to discourses relating to the character and purpose of IAPT and specialist intellectual disability services. Conclusions Opportunities exist for some people with intellectual disabilities to assert their candidacy for IAPT input, although there are barriers at individual, professional, organisational and structural levels. More attention needs to be paid to how principles of inclusiveness are operationalised within IAPT teams and to the mental health facilitation role of specialist intellectual disability staff.

Background Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. Methods This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. Results The core category identified was ‘Patient-related considerations when issuing DNAR orders’. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of ‘The decision-maker role’ was as important as that of ‘The decision procedure in an organisational context’. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. Conclusion The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making.

Background: People with intellectual disabilities (IDs) die at younger ages than the general population, but nationally representative and internationally comparable mortality data about people with ID, quantifying the extent and pattern of the excess, have not previously been reported for England. Method: We used data from the Clinical Practice Research Datalink database for April 2010 to March 2014 (CPRD GOLD September 2015). This source covered several hundred participating general practices comprising roughly 5% of the population of England in the period studied. General practitioner (GP) records identified people diagnosed by their GP as having ID. Linked national death certification data allowed us to derive corresponding mortality data for people with and without ID, overall and by cause. Results: Mortality rates for people with ID were significantly higher than for those without. Their all‐cause standardised mortality ratio was 3.18. Their life expectancy at birth was 19.7 years lower than for people without ID. Circulatory and respiratory diseases and neoplasms were the three most common causes of death for them. Cerebrovascular disease, thrombophlebitis and pulmonary embolism all had standardised mortality ratios greater than 3 in people with ID. This has not been described before. Other potentially avoidable causes included epilepsy (3.9% of deaths), aspiration pneumonitis (3.6%) and colorectal cancer (2.4%). Avoidable mortality analysis showed a higher proportion of deaths from causes classified as amenable to good medical care but a lower proportion from preventable causes compared with people without ID. International comparison to areas for which data have been published in sufficient detail for calculation of directly standardised rates suggest England may have higher death rates for people with ID than areas in Canada and Finland, and lower death rates than Ireland or the State of Massachusetts in the USA. Conclusions: National data about mortality in people with ID provides a basis for public health interventions. Linked data using GP records to identify people with ID could provide comprehensive population‐based monitoring in England, unbiased by the circumstances of illnesses or death; to date information governance constraints have prevented this. However, GPs in England currently identify only around 0.5% of the population as having ID, suggesting that individuals with mild, non‐syndromic ID are largely missed. Notably common causes of death suggest control of cardiovascular risk factors, epilepsy and dysphagia, management of thrombotic risks and colorectal screening are important areas for health promotion initiatives.

Background The construct of self-determination has received considerable attention in the international field of intellectual disabilities (ID). Recently, there has been a rapid development of this construct in Chinese societies including Hong Kong. However, there is no locally validated instrument to measure self-determination in people with ID. This article explains the validation process of the AIR Self-Determination Scale – Chinese version (AIR SDS-C) adapted from the 24-item AIR Self-Determination Scale, developed by Wolman and his colleagues, which is used in school setting. Methods People with mild/moderate ID aged 15 years or above were recruited from special schools and social services units in different regions of Hong Kong. Factor analysis and reliability tests were conducted. Results Data for a total of 356 participants were used for the analysis. A confirmatory factor analysis was performed to test the factorial construct, and Mplus 7.0 was used for the analysis. The factor structure proposed in the original English version was supported by the data, and all factor loadings were between 0.42 and 0.76. The whole scale achieved good reliability (Cronbach's α = 0.88 and ω = 0.90). Conclusions The AIR SDS-C appears to be a valid and reliable scale. This study examined adult groups as well as student groups. The application of the scale can thus be extended to a wider population. The implications for theory building and practice are discussed.

Background Despite a lack of consensus regarding prevalence rates of substance abuse, people with intellectual disabilities (ID) on average use substances slightly less often than their non-disabled peers. However, their use of substances is more often problematic. Avoidance of treatment is a crucial problem among substance-abusing people with ID. This study tested a motivational intervention to facilitate autonomous motivation (i.e. wanting to change substance abuse because of a sense of free choice and volition) for engaging with a subsequent addiction treatment. Method A multiple-case experimental design (N = 6) was conducted to measure day-to-day motivation to change substance abuse among individuals with mild ID (N = 3) and borderline level of intellectual functioning (N = 3) in the Netherlands. The participants (five men, one woman) lived in the community (except one, he lived in a residential facility) and abused cannabis, alcohol or hashish. During the intervention phase, the 10-session treatment programme ‘Beat the kick’ was delivered by an experienced psychologist, based on motivational interviewing techniques adapted for people with mild to borderline ID. Participants completed an adaptive self-reported inventory based on self-determination theory (SDT) two to three times a week during baseline, intervention and 1-month follow-up. Results The results of five of the six participants (one dropped out) showed that the type of motivation changed from more controlled types of motivation (i.e. external motivation and introjected motivation) at baseline to more autonomous types of motivation after completion of the intervention. In addition, the participants reported a significant increase in overall need satisfaction and autonomy satisfaction and a significant decrease of overall need frustration. Conclusions The implementation of SDT and motivational interviewing principles in the treatment programme ‘Beat the kick’ reliably changed the type of motivation. In addition, the experimental effects provide initial proof of the use and applicability of SDT among people with ID.

Background Goals and objectives as mentioned in Individual Support Plans (ISPs) were analysed to explore what domains of quality of life they are associated with, what support resources are referenced for achieving the goals, and how domains and resources are related to clients age, gender and intellectual disability (ID) level. Method A total of 209 ISPs for persons with ID from eight residential Dutch service provider organisations were analysed. Mixed linear regression analyses were conducted to examine the relations between client characteristics and the content of goals and support resources. Results Results showed that ISPs of people with mild and moderate ID had significantly more goals related to independence and social participation as compared to the ISPs of people with severe and profound ID. ISPs of clients with profound ID addressed quality of life factors related to ‘well-being’ more than ISPs of all other clients. ISPs of people aged 20–34 years had significantly more goals on independence than the two other age groups. ISPs of people under the age of 50 had significantly fewer goals with respect to well-being than found in ISPs of older people. Regarding the use of resources, 42.6% of the ISP goals were associated with resources from specialised services, 31.5% associated with natural resources and 25.9% associated with a combination of both natural and specialised services. In ISPs of people with mild ID, natural resources are more often mentioned, and specialised service-based resources are less often mentioned than for other people. Conclusions This study offers empirical feedback on ISP practices in the field of ID in the Netherlands. In light of current ISP practices, results suggest that attention should be paid to: (1) distinguishing between a ‘service contract’ and an ISP; (2) keeping a focus on the whole person in all age groups and levels of functioning and (3) involving the service recipient in ISP development and implementation.

Background The aim of this article was to investigate the beliefs and considerations of professionals concerning an appropriate environment for end-of-life care for people with intellectual disabilities (ID). Method A survey questionnaire was composed based on a scan of relevant literature and the results of group interviews with professionals, family members and people with ID. The questionnaire focused on the respondents' general beliefs about an appropriate environment for end-of-life care and their specific considerations regarding the place of care of the last client for whom the respondent provided end-of-life care. The questionnaire was sent to 294 care staff members recruited from a nationally representative panel of nurses and social workers, 273 ID physicians recruited from the members list of the Dutch professional association of ID physicians, and 1000 general practitioners (GPs) recruited from a nationally representative sample from a national registration of GPs. Results The overall response was 46%. Professionals predominantly believe that all efforts should be made to ensure that a person with ID receives end-of-life care in their own home environment, and that 24/7 care is available. Respondents indicated that most of the clients (79%) who had last received end-of-life care from an ID care service were able to stay in their own home environment. Decisions to keep the client in their own home environment were primarily based on the familiarity of the environment and the expertise of the team in end-of-life care. Insufficient expertise and a lack of adequate equipment were the main considerations in decisions to move a client. Despite the belief of care staff in particular that the wishes of the person with ID should always be leading when deciding on the place of end-of-life care, only 8% of the care staff and ID physicians explicitly mentioned that the client's wishes were taken into account in actual decision-making. Conclusions Professionals agree that end-of-life care for people with ID should preferably take place in the client's home environment, even when nursing expertise, experience and adequate equipment are not (yet) in place. Nonetheless, a lack of expertise in end-of-life care is the foremost consideration in decisions to move a client. If ID care services want to promote end-of-life care in the client's own home, we recommend formulating a policy on how to realise end-of-life care in the client's own home environment and provide sufficient training and support for staff. To involve people with ID as much as possible, we recommend that professionals integrate more collaborative principles in decision-making about the place of end-of-life care.

Background The population of people with intellectual disabilities (ID) is increasing and their health needs impact on primary and secondary healthcare specialities. One important aspect of their physical health is bone health as people with ID have increased risk factors associated with osteoporosis. It has been identified that this population has an increased prevalence of low bone mineral density (BMD), osteoporosis and osteopenia. The main contributory factors for low BMD are age, use of antiepileptics, immobility and diagnosis of Down's syndrome. Methods A literature search of electronic databases was undertaken. Studies that included people with ID were reviewed for the prevalence of osteoporosis and osteopenia. A cross-sectional survey was conducted in a community sample (n = 149) to screen for risk factors for osteoporosis. Results The majority of studies identified increased prevalence of osteoporosis and osteopenia with associated low BMD. In most studies individuals with ID presented with more than two risk factors. In our survey, we identified an increased prevalence of risk factors associated with osteoporosis, namely use of antiepileptics (64%), immobility (23%), history of falls (20%) and fractures (11%). We found that 54% of our sample fulfilled the criteria for screening. Of those who went on to have scans, 55% had osteoporosis and 33% had osteopenia. Conclusion We conclude that we should be screening for the risk factors associated with low BMD in adults with ID. If these are present further investigations should take place and those found to have osteoporosis and osteopenia should have treatment at an early stage to prevent morbidity and improve their quality of life. Language: en

Background Staff attitudes may affect choices available to persons with intellectual disabilities (ID). This study examined attitudes towards people with ID among staff working with people with ID in Japan and the United States. Method Attitudes of staff working with people with ID in Japan and the United States were compared using the Community Living Attitudes Scale, Intellectual Disabilities Form. Responses were examined via multivariate analysis of variance. Results In unadjusted analyses, Japanese staff exhibited a greater tendency towards Sheltering and Exclusion of people with ID and lower endorsement of Empowerment and Similarity of people with ID. After controlling for covariates, the country effect was no longer significant for Sheltering and Exclusion. Age and education were significantly associated with attitudes in the adjusted model. Conclusions While attitudes in Japan appeared less supportive of community inclusion of people with ID, some of the differences between countries were attributable to other staff characteristics such as age and education. Findings provide new information about how attitudes of staff in each country compare with each other.

People with intellectual disabilities have poorer health than their non-disabled peers. They are also more likely to be exposed to a wide range of environmental adversities in childhood. Research undertaken in the general population has demonstrated that exposure to environmental adversity in childhood can have an adverse impact on health and well-being across the life course. Recently, research in this area has added new breadth and depth to our understanding of: (1) the extent to which cumulative exposure to environmental adversities across the life course, but especially in early childhood, can reduce health and well-being; (2) the social, psychological and biological mediating pathways through which environmental adversities may impair health; (3) the processes associated with resilience and vulnerability in the face of exposure to adversity; and (4) the social significance of these effects in accounting for the magnitude of the inequalities in health that are apparent both between and within populations. This new knowledge is making a significant contribution to the development of social policies that seek to combine health gain with the reduction in health inequalities. This paper attempts to apply this knowledge to research aimed at understanding and improving the health and well-being of people with intellectual disabilities.

Aim The aim of this review is to summarise current understanding of the neurobiology of aggression and within this context to consider the evidence base for the pharmacotherapy of aggressive challenging behaviour by people with intellectual disabilities (ID). Evidence Aggressive encounters involve a variety of psychological processes and progress has been made in understanding the brain mechanisms involved. However, the role in aggression of the neurotransmitters serotonin, dopamine and γ-aminobutyric acid is no longer as clear as it once appeared, with the result that predictions cannot be made with confidence about drug effects on aggression. There have been relatively few controlled trials of pharmacotherapy for aggression in people with ID, or, indeed, in the general population, and their outcomes have largely been negative. Conclusion With the possible exception of risperidone, there is no reliable evidence that antidepressant, neuroleptic or anticonvulsant drugs are effective treatments for aggression by people with ID.

Background We hypothesised that a key factor determining the quality of active support was ‘practice leadership’ – provided by the first-line manager to focus staff attention and develop staff skills in providing direct support to enable people with intellectual disabilities to have a good quality of life. This exploratory study focused on what levels of practice leadership were found and its role in explaining variation in active support. Method Relevant aspects of management, including practice leadership, were assessed by questionnaires administered to staff in residential settings alongside observational measures of active support and resident engagement in meaningful activity. Relationships between these variables were explored using regression and post hoc group comparisons. Results There was wide variation, with average levels of practice leadership being low, though improving over the period studied. Practice leadership had a significant impact on active support, but was fully mediated by the effect of quality of management. When the quality of management was higher better practice leadership did produce a significant difference in active support. However, higher quality of management on its own did not produce better active support. Conclusions A number of limitations are acknowledged and further research is required. Practice leadership appears to be an important factor in enabling staff to provide active support but as part of generally good management. Given the rather low levels found, attention needs to be given to the training, career development and support of practice leaders and also to how to protect their time from their many other responsibilities.

BACKGROUND: The problem of mobbing has attracted a great deal of attention over the past few years. This concern has increased the study of the phenomena, which has resulted in many scientific publications. Mobbing has been characterised as an emerging risk at work. The aim of this longitudinal study was to analyse the influence of mobbing on depressive symptoms in a sample of employees working with people with intellectual disabilities (ID). METHOD: The sample consisted of 372 Spanish employees working with people with ID at 61 job centres in the Valencian Community (Spain). Seventy-nine (21.2%) participants were men, and 293 were (78.8%) women. Mobbing was evaluated by the Mobbing-UNIPSICO scale, and depressive symptoms were measured using the Zung Self Rating Depression Scale. Using analyses of variance (anova), we tested the differences in depressive symptoms according to the mobbing criteria indicated by Leymann, that is, frequency and duration at Time 1 and Time 2. RESULTS: Employees who met the mobbing criteria: frequency (at least once a week) and duration (at least 6 months) at the two study times presented significantly higher levels of depressive symptoms than employees who met mobbing criteria at Time 1, but did not meet any criteria for mobbing at Time 2, and employees who did not meet any criteria for mobbing at Time 1 or Time 2. CONCLUSIONS: We conclude that permanence of mobbing from Time 1 to Time 2 increases depressive symptoms. Language: en

Background: The aim of this article was to describe how caregivers and relatives shape respect for autonomy in the end-of-life care for people with intellectual disabilities (ID) and to discuss to what extent this corresponds with a relational concept of autonomy, such as described in care ethics. Methods: This study consisted of a qualitative design in which the cases of 12 recently deceased people with ID were reconstructed by interviewing the caregivers and relatives who were closest to the person at the end of their life. A cyclic process of data collection and analysis was used. Interviews were transcribed verbatim and data were analysed inductively. Results: Respect for autonomy in the end-of-life care of people with ID was mainly reflected in helping the person with ID familiarise with three transitions: new information on the diagnosis and prognosis, changing care needs and wishes, and important decisions that were at stake. In respecting autonomy, relatives and caregivers encountered several challenges. These concerned ascertaining information needs, communicating about illness and death, inexperience in end-of-life care, eliciting current and hidden last wishes, the dependence of people with ID and conflicting wishes. Several qualities were important for respecting autonomy: attention to information needs, connecting, recognising end-of-life care needs, giving space to show wishes and preferences, and discussing dilemmas. Conclusions: If caregivers and professionals embrace autonomy as a relational construct, attained through an open, active and reflective attitude, and have more access to knowledge about communication and how to identify end-of-life care needs, this could lead to improved respect for the ID persons' autonomy at the end of life. We discuss the view that a relational concept of autonomy is useful for describing respect for autonomy in end-of-life care for people with ID, but that more reflection and openness is needed to sufficiently employ relationships and regard autonomy as a product of joint work. (aut. ref.)

Background Beliefs about the controllability of behaviour have been consistently shown to be important in understanding the responses of carers to the challenging behaviour of people with intellectual disabilities (IDs). This paper reports the reliability and validity of the Controllability Beliefs Scale (CBS), a 15-item measure of beliefs regarding the controllability of challenging behaviour when used with carers of people with IDs. Methods Two hundred and sixty-four carers of people with IDs completed the CBS, 74 people also completed the Modified Attributional Style Questionnaire and the Self-Injury Behavioural Understanding Questionnaire scale to determine concurrent and convergent validity and 34 people completed the scale twice within a 2- to 4-week period to determine testretest reliability. Results The scale has a two-factor structure and has adequate internal reliable. The scale is significantly correlated with the controllability, internality and stability items from the Modified Attributional Style Questionnaire, showed expected associations with behavioural and internal emotional understanding items from the Self-Injury Behavioural Understanding Questionnaire. The scale has good testretest reliability. Conclusions The data support use of the CBS in clinical practice and research to assess carers' beliefs regarding challenging behaviour of people with IDs.

Background: Research suggests that social exclusion is a problem both for people with intellectual disabilities (ID) and for people living in rural areas. This may give rise to a double disadvantage for people with ID living in rural areas. Conversely, aspects of rural life such as community spirit and social support may protect against social exclusion in this population. This study was designed to compare a number of measures of social exclusion in adults with ID living in rural and urban areas, with the aim of identifying whether a double disadvantage exists. Method: Adults with ID were recruited from a rural and an urban area in Scotland. Participants participated in a face-to-face interview and their medical notes were accessed. Social exclusion was investigated using a number of measures comprising: daytime opportunities and physical access to community facilities (using part of the British Institute of Learning Disabilities questionnaire), recent contact with others and the quality of personal relationships (using a modified Interview Measure of Social Relationships questionnaire) and area deprivation by postcode (using the Scottish Index of Multiple Deprivation). The data were analysed using a series of binary logistic regression models that adjusted for variables including age, gender, level of ID, mental illhealth and common physical co-morbidities. Results: A representative sample of adults with ID from rural (n = 39) and urban (n = 633) areas participated. Participants from rural areas were significantly more likely to have any regular daytime opportunity [odds ratio (OR) = 10.8, 95% CI = 2.3–51.5] including employment (OR = 22.1, 95% CI = 5.7–85.5) and attending resource centres (OR = 6.7, 95% CI = 2.6–17.2) than were participants from urban areas. They were also more likely to have been on holiday (OR = 17.8, 95% CI = 4.9–60.1); however, were less likely to use community facilities on a regular basis. Participants from urban and rural areas had a similar number of contacts with other people in a wide range of situations, but the quality of relationships may have been less close in rural areas. Finally, participants lived in significantly less deprived areas when in rural compared with urban areas (Mann–Whitney U = 7826, Z = −3.675, P ≤ 0.001). Conclusions: These results suggest that adults with ID living in rural areas have better opportunities and live in less deprived areas than adults with ID living in urban areas. However, they may not hold such positive or close relationships, and this may be important when considering the subjective experience of social exclusion.

Background The demand for (care) services for people with intellectual disabilities (ID) is on the rise, because of an expanding population of people with ID as resources are concurrently diminishing. As a result, service providers are increasingly turning to technology as a potential answer to this problem. However, the use and application of surveillance technology (ST) in the care for people with ID provokes conflicting reactions among ethicists and healthcare professionals, and no ethical consensus has been reached as of yet. The aim of this study was thus to provide an overview of how ST is viewed by (care) professionals and ethicists working in the field by investigating what the ideal application of ST in the residential care for people with ID might entail. Methods Use was made of the concept mapping method as developed by Trochim; a computer-assisted procedure consisting of five subsequent steps: brainstorming, prioritising, clustering, processing by the computer and finally analysis. Various participants (ranging from ethicists, physicians to support workers) were invited on the basis of their intended (professional) background. Prior to this study, the views of care professionals on the (ideal) application of ST in the residential care of people with dementia have been consulted and analysed using concept mapping. A comparison between the two studies has been made. Results Results show that the generated views represent six categories, varying from it being beneficial to the client; reducing restraints and it being based on a clear vision to (the need for) staff to be equipped; user friendliness and attending to the client. The results are presented in the form of a graphic chart. Both studies have produced very similar results, but there are some differences, as there appears to be more fear for ST among care professionals in the care for people with ID and views are expressed from a more developmental perspective rather than a person-centred perspective with regard to people with dementia. Conclusions When it comes to views on using technology both in dementia care and the care for people with ID, there appears to be an inherent duality, often rooted in the moral conflict between safety versus freedom or autonomy. What is more, elaboration on abstract concepts often presumed to be self-evident, whether ethical or not, has proven to be difficult. How ST is viewed and apprehended is not so much dependent of the care setting and care needs, but rather whether it is clear to everyone affected by ST, what one wants to achieve with ST. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 Blackwell Publishing Ltd.

Background In the context of a health intervention among people with intellectual disabilities (ID), there was a need to assess satisfaction with some aspects of life, in order to monitor both potential positive and negative effects of the intervention. The aim of the present study was to develop and evaluate an easily administered scale for assessing satisfaction with home environment and leisure time among people with mild or moderate ID, living in community residences. Methods A number of questions were constructed to measure satisfaction with home environment and leisure time. The questions were answered by 132 adults with mild or moderate ID, living in community residences in Sweden. The dimensionality of the scale was evaluated by factor analysis, and the reliability was estimated using Cronbach's alpha coefficients. Results The analysis supported a four-factor solution with 12 items. The four factors were: (I) Satisfaction with housing environment; (II) Satisfaction with life; (III) Satisfaction with meals; and (IV) Satisfaction with recreational activity. The four factors explained almost 70% of the variance in the data set. Cronbach alpha coefficients for all scales were above 0.70, indicating that the reliabilities of the scales were satisfactory. Correlations between the four sub-scales ranged from 0.06 to 0.52, indicating low to moderate inter-correlations between the four sub-scales. Conclusion The scale has fairly good psychometric properties and is easy to administer. The scale, which can be further improved, can be an important resource in health intervention studies.

Background Anger and aggression among adults with intellectual disability (ID) are associated with a range of adverse consequences for their well-being and that of their family or staff carers. The aims were to evaluate the effectiveness of an anger management intervention for adults with mild to moderate ID and to evaluate the costs of the intervention and its impact on health and social care resource use. This paper is concerned with the latter aim. Methods A cluster-randomised controlled trial was conducted involving day services for adults with ID in Scotland, England and Wales. Incremental costs of delivering the intervention and its impact on subsequent total health and social care package costs were calculated. Full data comparing costs between baseline and follow-up 10 months later were collected for 67 participants in the intervention arm and 62 participants in the control arm. Cost differences between the groups at follow-up, adjusted for baseline levels, were calculated using non-parametric bootstrapping controlling for clustering. Results The mean hourly excess cost of intervention over treatment as usual was £12.34. A mean adjusted cost difference of £22.46 per person per week in favour of the intervention group was found but this was not statistically significant. Conclusions The baseline-adjusted cost difference at follow-up would result in a fairly immediate compensation for the excess costs of intervention, provided the difference is not a statistical artefact. Further research is needed to clarify the extent to which it might represent a real saving in service support costs.

Background Health checks for people with intellectual disabilities (ID) have been recommended as one component of health policy responses to the poorer health of people with ID. This review summarises evidence on the impact of health checks on the health and well-being of people with ID. Methods Electronic literature searches and email contacts were used to identify literature relevant to the impact of health checks for people with ID. Results A total of 38 publications were identified. These involved checking the health of over 5000 people with ID from a range of countries including a full range of people with ID. Health checks consistently led to detection of unmet health needs and targeted actions to address health needs. Conclusions Health checks are effective in identifying previously unrecognised health needs, including life-threatening conditions. Future research should consider strategies for optimising the cost-effectiveness or efficiency of health checks.

Background As people with intellectual disabilities (ID) today live integrated in society and use different technological artefacts and services in their everyday life, more in-depth evaluation methods are crucial to detect strengths and limitations of their everyday technology use. The Everyday Technology Use Questionnaire (ETUQ) was originally designed to investigate the extent to which older adults with cognitive limitations can use the everyday technology that is of relevance to them. The purpose of this study was to explore and evaluate evidence of the validity of ETUQ among adult persons with ID. Methods The original 93-item ETUQ was used to interview 120 adult participants with ID, recruited from a region in northern Sweden. A Rasch model was used to analyse the psychometric properties of the rating scale, scale validity, person response validity and person separation. Results The ETUQ rating scale displayed sound psychometric properties when used with this sample. The goodness-of-fit statistics showed that 15 (16%) of the 93 items demonstrated higher values than expected. A step-by-step removal process of items not demonstrating fit to the model resulted in an ETUQ version with 46 items (49%) that met all the criteria for scale validity. Fifteen participants (12%), primarily with mild ID, still demonstrated a higher number of unexpected responses included in ETUQ. Conclusions The results of this study indicate that the ETUQ generates a valid measure of perceived difficulty in using everyday technology including adult persons with ID.