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ABSTRACT Background Methods Results Conclusions Longitudinal studies of family carers of people with intellectual disabilities during the COVID‐19 pandemic have been very rare. This study investigated trajectories of family‐carer wellbeing and the impact of the caring role on carers' health over four time points measured during the COVID‐19 pandemic and after all public health restrictions had been lifted (between December 2020 and late 2022) across the United Kingdom.Family carers of adults with intellectual disabilities participated through a co‐designed, online survey at four time points across the pandemic (2020–2022). Growth models were used to determine the change in family‐carer wellbeing (n = 312) and the impact of the caring role on carers' health across the pandemic and what factors were associated with these outcomes. We explored associations between profound and multiple intellectual disabilities (PMID), the cared‐for person's individual wellbeing, the cared‐for person's age, whether the cared‐for person lived with their family and family‐carer wellbeing and impact of caring trajectories.Overall, family‐carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period. If the cared‐for person had PMID was associated with greater degrees of depression and stress for caregivers and thus increased the impact of the caring role on carers' health, but it was not associated with carer wellbeing. Similarly, the reduction in individual wellbeing of the cared‐for person and the caregiver's perception of this person's wellbeing was also significantly associated with increased impact of the caring role on carers' health and carer wellbeing. There was no evidence that age of cared‐for person was predictive of either outcome, and there were mixed findings on whether living at home was an associated factor for either outcome.Overall, family‐carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period, but the cared‐for persons' poorer wellbeing and complex needs (indexed by the presence of PMID) were associated with negative impacts on family carers during the pandemic period. [ABSTRACT FROM AUTHOR]

Background: 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. Method: 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. Results: Personal physical activity behaviour is related to the recommended physical activity for people with intellectual disabilities (moderate‐to‐vigorous physical activity: rs = 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. Conclusion: 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. [ABSTRACT FROM AUTHOR]

Background: There is limited understanding of the context surrounding physical activity (PA) of young people with intellectual disabilities (ID), which has an impact on the development of PA promotion programmes. Peer social connectedness seems to be a vital correlate to focus on, but has not been included in current studies examining the correlates and determinants of PA levels of young people with ID. This study aims to synthesise the evidence on (1) the social constructs researchers have used to conceptualise peer social connectedness in a PA context among young people with ID, (2) the measurement tools that have been used and (3) the relationship between PA and peer social connectedness in young people with ID. Methods: The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. Ovid MEDLINE, Ovid Embase, Web of Science, ERIC, CINAHL and PsycINFO were searched from 1 January 1996 up to, and including, July 2023 to identify English‐language studies, which examined associations between PA and peer social connectedness in adolescents and young adults (13–24 years) with ID. Study quality was assessed using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields. Results: Thirteen studies met the inclusion criteria and were included in the review. Ten peer social connectedness constructs and 18 measurement instruments were identified. Studies were predominantly focused on Special Olympics participants and unified activity formats. Participation in PA can increase social connectedness, but there is a lack of studies examining whether PA can also be increased by focusing on peer social connectedness in young people with ID. Conclusions: Results show that peer social connectedness is recognised as relevant to researchers developing and testing PA programmes for young people with ID. [ABSTRACT FROM AUTHOR]

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: 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: 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: The prevalence of overweight/obesity has been increasing globally and in people with Intellectual Disabilities (IDs), this problem is exacerbated even more, which added to a low physical condition that contributes to the deterioration of functionality and increases the risk of developing chronic diseases in the course of life. Therefore, the aim of this study was to establish cut‐off points for levels of isometric handgrip and low limb explosive strength in children, adolescents and adults, which identify overweight/obesity in people with IDs and their respective associations. Methods: The sample was made up of 131 individuals with IDs, belonging to four special and community educational centres in the city of Santiago, Chile. Body mass index (BMI) and waist‐to‐height ratio (WHR) were used as indicators of overweight/obesity. Handgrip strength was used as a measure of isometric strength, and countermovement jump was used as a measure of low limb explosive strength. For the comparison of variables by age group, the analysis of Ancova, Kruskal–Wallis and chi‐square tests were used. The total area under the receiver operating characteristic curve of isometric handgrip and low limb explosive strength was identified as an indicator of overweight/obesity according to age groups. A logistic regression model was used to quantify the effect that strength categories below the cut‐off point have on the risk of overweight and obesity. Results: Significant differences were observed between the age groups for body weight, height, BMI and WHR, as well as in the levels of absolute handgrip strength and vertical jump with countermovement (P ≤ 0.05). Children showed the lowest cut‐off points for absolute and relative strength. The adolescent group showed the highest cut‐off points for relative strength and countermovement jump and adults showed the highest value for absolute strength as indicators of overweight/obesity. Different associations between cut‐off points with BMI and WHR were found. Conclusions: Adolescents showed the highest cut‐off point for relative strength and countermovement jump, and adults showed the highest value for absolute strength, according to overweight/obesity indicators (BMI and WHR). It is suggested to adjust resistance training programmes according to age categories for the prevention of overweight/obesity in people with IDs. [ABSTRACT FROM AUTHOR]

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 a = 0.88 and ? = 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: People with intellectual disabilities (ID) have a higher risk of sleep disorders. Polysomnography (PSG) remains the diagnostic gold standard in sleep medicine. However, PSG in people with ID can be challenging, as sensors can be burdensome and have a negative influence on sleep. Alternative methods of assessing sleep have been proposed that could potentially transfer to less obtrusive monitoring devices. The goal of this study was to investigate whether analysis of heart rate variability and respiration variability is suitable for the automatic scoring of sleep stages in sleep‐disordered people with ID. Methods: Manually scored sleep stages in PSGs of 73 people with ID (borderline to profound) were compared with the scoring of sleep stages by the CardioRespiratory Sleep Staging (CReSS) algorithm. CReSS uses cardiac and/or respiratory input to score the different sleep stages. Performance of the algorithm was analysed using input from electrocardiogram (ECG), respiratory effort and a combination of both. Agreement was determined by means of epoch‐per‐epoch Cohen's kappa coefficient. The influence of demographics, comorbidities and potential manual scoring difficulties (based on comments in the PSG report) was explored. Results: The use of CReSS with combination of both ECG and respiratory effort provided the best agreement in scoring sleep and wake when compared with manually scored PSG (PSG versus ECG = kappa 0.56, PSG versus respiratory effort = kappa 0.53 and PSG versus both = kappa 0.62). Presence of epilepsy or difficulties in manually scoring sleep stages negatively influenced agreement significantly, but nevertheless, performance remained acceptable. In people with ID without epilepsy, the average kappa approximated that of the general population with sleep disorders. Conclusions: Using analysis of heart rate and respiration variability, sleep stages can be estimated in people with ID. This could in the future lead to less obtrusive measurements of sleep using, for example, wearables, more suitable to this population. [ABSTRACT FROM AUTHOR]

Background: The objective of this study was to evaluate the effectiveness of a 14‐week resistance training programme implemented with high levels of effort to improve physical fitness in people with intellectual disabilities (IDs) living in group homes. Methods: Fifty‐two individuals with mild to moderate IDs participated in the experimental (n = 27; 15 men) or control groups (n = 25; 14 men). Participants performed 2 familiarisation sessions, 1 pretest, 42 training sessions (14 weeks × 3 sessions; only the experimental group) and 1 posttest. The testing sessions comprised the evaluation of body composition, static balance and muscle strength. The training sessions included four blocks: (1) dynamic bodyweight exercises, (2) dynamic exercises performed against external loads, (3) ballistic exercises and (4) static exercises. Results: The main findings revealed that all variables related to body composition and muscle strength improved more after the intervention period in the experimental group than the control group, whereas the improvements in static balance for the experimental groups were lower than for the remaining variables used as markers of physical fitness. Conclusions: These findings highlight the importance of prescribing specific moderate‐intensity to high‐intensity resistance training programmes to improve body composition and muscle strength for people with IDs living in group homes. [ABSTRACT FROM AUTHOR]

Background: 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. Methods: 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. Results: 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. Conclusions: Compared with the control group, people with ID used more medicines, especially psychotropics, and their expenditure on medicine use was higher. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: The 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. Methods: Two 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. Results: The 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. Conclusion: The 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. (Contains 1 figure and 1 footnote.)

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. (Contains 6 tables and 3 figures.)

The article discusses efforts toward quality improvement (QI) of people with intellectual disabilities' (ID's) health monitoring through using an integrative review, including in regard inequalities of medical care for people with IDs. An overview of the improvement of healthcare professional employees' understanding of people with ID's physical health needs is provided.

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 test-retest 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 test-retest 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. (Contains 2 tables.)

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" less than or equal to 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. (Contains 7 tables.)

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. (Contains 2 tables.)

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. (Contains 2 tables and 1 figure.)

Background: Although about 15 to 50 percent of people with intellectual disabilities (ID) living in residential settings suffer from sleep problems, scant attention is paid to these problems. Most available studies focus on pharmaceutical solutions. In this study we focus on improving sleep in people with intellectual disabilities living in residential settings by non-pharmaceutical interventions. Method: The design is a multiple case study using actigraphy. Following a baseline measurement of people with ID, we recommended an intervention such as bedtime scheduling. This was followed by an effect measurement. Results: Sleep efficiency, sleep latency and rising latency improved significantly. The time spent in bed also decreased significantly and the hours of sleep while in bed increased significantly. Conclusion: For people with ID, sleep can be improved by non-pharmaceutical interventions. A multidisciplinary approach is helpful in selecting an adequate intervention.

Background: Adults with intellectual disability (ID) have a higher rate of fall events than the general population. Consequently, interventions for reducing fall events and improving health are highly required for individuals with ID. One essential step towards effectively delivering fall prevention interventions among adults with ID involves evaluating their feasibility. This study examined the feasibility of a home‐based exercise intervention, supplemented with behavioural change strategies, among individuals with ID living in residential settings. Method: This study provided an 8‐week intervention, consisting of a workshop for support workers and sessions for participants with ID, focusing on behavioural reward/s, education regarding fall prevention/exercise and exercise training. One week prior to and 1 week following such an intervention, such participants underwent measurements for (1) physical performance, (2) fall efficacy, (3) self‐efficacy for activity and (4) social support. Results: Participants having ID (n = 33), support workers (n = 11) and one administrator participated in this study. There were no adverse events during the intervention, and the mean adherence rate was 70.8 ± 19.5%. Two participants with ID dropped out of the programme due to a lack of interest. The participants with ID significantly improved individual physical performance, self‐efficacy for activity, fall efficacy and support from friends and support workers. Conclusions: Fall prevention interventions for adults with ID living in group‐homes were highly promising for eventual large‐scale implementation within such communities. [ABSTRACT FROM AUTHOR]

Background: There has been little prior investigation of the general health of young people with intellectual disabilities across transition, nor separately for youth with intellectual disabilities with or without Down syndrome, despite general health being a strong predictor of subsequent health service use, hospital admissions and mortality in the general population. We aimed to investigate general health status in youth with intellectual disabilities with and without Down syndrome over the transitional period and quantify the extent to which personal characteristics, parental relationship and household income are associated with general health status. Methods: The National Longitudinal Transitions Study‐2 includes a nationally representative sample of youth receiving special education services aged 13–17 years at wave 1, followed up over 10 years in five waves of data collection. Data on general health status of youth with intellectual disabilities with and without Down syndrome were obtained from parent reports. We summarised overall demographics and general health status and plotted general health status for those who had health data available for all five waves. We then used random‐effects ordered logistic regression to investigate whether wave of data collection, age, sex, Down syndrome, ethnicity, parental relationship status and household income are associated with general health status. Results: At wave 1, data on intellectual disabilities were available on 9008/9576 (94.1%) young people, and 871/9008 (9.7%) of them had intellectual disabilities, of whom 125/871 (14.4%) had Down syndrome. Youth with intellectual disabilities with or without Down syndrome had low rates of excellent or very good health. Across waves 1–5, there was a shallow gradient in the proportion of youth with intellectual disabilities reporting excellent/very good health, from 57.7% at 13–17 years to 52.6% at 21–25 years, being more marked for those without Down syndrome (57.8% at 13–17 years to 51.8% at 21–25 years). However, contrary to our expectations, an ordinal measure of general health status did not decline over this transitional period and did not differ between youth with and without Down syndrome. There was a gradient with higher income associated with better health, significantly so over $50 001 (odds ratio = 0.559, 95% confidence interval 0.366–0.854). Poorer health was experienced by youth with Hispanic, Latino or Spanish ethnicity (odds ratio = 1.790, 95% confidence interval 1.051–3.048). Female sex and parental relationship status were not associated with health status. Conclusions: Young people with intellectual disabilities have bad health, and require support across all ages, including transition. Schools, teachers and staff in transitional services should consider health, and health care and support during transitional planning due to change in service provision and be aware of ethnicity and the stressful effects of low household income. This is important as interventions based on provision of greater support can prevent adverse consequences. [ABSTRACT FROM AUTHOR]

Background: Patient experience of those accessing mental health services has been found to be different between ethnic groups. Although the needs of people with intellectual disabilities (ID) from different ethnic communities are being increasingly recognised, little has been published about their experiences of mental health services. The aim of this study was to establish whether there are any differences in the experiences of people with ID and mental health problems from two ethnic communities in South London. Method: A two-round Delphi process was utilised. White British and Black or Black British service users from a specialist community-based mental health service for adults with ID completed a specially compiled questionnaire. Statements on participants' experiences, including satisfaction with care, staff members' attitudes, cultural awareness and level of support, were rated using a Likert scale. Results: Twenty-four out of 32 participants (75%) completed both rounds of the Delphi consultation. Consensus ([greater than or equal]80% agreement with the group median) was reached for 20 items in the White group and five items in the Black group. All responses that reached consensus were positive about the services that were being received. The Black group were less positive about a range of their experiences, including the use of medication. Conclusions: People with ID from two ethnic groups were able to successfully complete a Delphi consultation regarding their experiences of mental health services. Broad consensus on positive experiences of services was reached in the White group but not for the Black participants. (Contains 4 tables.)

Background: The Mental Health Service for People with Learning Disabilities (MHSPLD) is a service development in keeping with UK government policy that promotes cross agency working and access to mainstream mental health services for people with intellectual disabilities. We aimed to show whether the service model brought about improvements in peoples mental state and level of functioning. Method: Community and inpatient groups were compared across three time points using a range of clinical outcome measures that assessed psychiatric symptoms, risk, needs and level of functioning. Results: Inpatients and community groups had similar mental health problems, but inpatients had higher unmet needs and lower functioning, and were at greater risk. There were significant improvements across the range of outcome measures in both groups. Conclusions: Working with mainstream mental health services and across health and social service boundaries delivers effective mental health care for people with intellectual disabilities.

Background: There is no widely used instrument to detect frailty in people with intellectual disabilities (IDs). We aimed to develop and validate a shorter and more practical version of a published frailty index for people with IDs. Method: This study was part of the longitudinal 'Healthy Ageing and Intellectual Disability' study. We included 982 people with IDs aged 50 years and over. The previously developed and validated ID‐Frailty Index consisting of 51 deficits was used as the basis for the shortened version, the ID‐FI Short Form. Content of the ID‐FI Short Form was based on statistics and clinical and practical feasibility. We evaluated the precision and validity of the ID‐FI Short Form using the internal consistency, the correlation between the ID‐FI Short Form and the original ID‐Frailty Index, the agreement in dividing participants in the categories non‐frail, pre‐frail and frail, and the association with survival. Results: Seventeen deficits from the original ID‐Frailty Index were selected for inclusion in the ID‐FI Short Form. All deficits of the ID‐FI Short Form are clinically and practically feasible to assess for caregivers and therapists supporting people with ID. We showed acceptable internal consistency with Cronbach's alpha of 0.75. The Pearson correlation between the ID‐Frailty Index and the ID‐FI Short Form was excellent (r = 0.94, P < 0.001). We observed a good agreement between the full and short forms in dividing the participants in the frailty categories, with a kappa statistic of 0.63. The ID‐FI Short Form was associated with survival; with every 1/100 increase on the ID‐FI Short Form, the mortality probability increased by 7% (hazard ratio 1.07, P < 0.001). Conclusion: The first validation of the ID‐FI Short Form shows it to be a promising, practical tool to assess the frailty status of people with ID. [ABSTRACT FROM AUTHOR]

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.

Background: As people with intellectual disabilities (ID) are living longer, their chances of developing cancer also increases. However, recognising the early signs and symptoms of cancer in a population with cognitive impairment and communication difficulties poses difficulties for both family carers and professional care staff. Engagement in health promotion and cancer prevention activities is also a challenge; yet, people with ID have an equal right to these important public services as other members of the population. Aims: The aim of this study was to examine how care staff engaged in cancer prevention and health promotion activities on behalf of people with ID. Methods: This was an exploratory descriptive study using a postal survey design employing a questionnaire. Fifteen residential facilities for adults with ID were targeted within one geographic region of the UK. In total, 40 residential staff completed a questionnaire about their knowledge of the risk and protective factors of stomach, breast, cervical and testicular cancer. Staff then completed questionnaires regarding 90 adults with ID, recording details about body mass index (BMI), lifestyle choices (i.e. smoking, dietary intake), "Helicobacter pylori" testing, family history of cancer and staff's health promotion and cancer prevention activities with these individuals. Findings: The women with ID were reported to have significantly higher BMIs than the men with ID and only two people with ID had been tested for the "H. pylori" infection: potential risk factors for developing breast and stomach cancer, respectively. The majority of the staff reported that they did not receive training in cancer prevention. Likewise, the majority of the staff reported that they were unaware of the family histories of the people with ID in their care. Reports varied with how staff engaged with people with ID regarding stomach, breast, cervical and testicular cancer health promotion activities and cancer screening opportunities. Discussion: Findings of this study show that health promotion and cancer prevention activities for people with ID may be less than optimal. The importance of staff training in order to raise knowledge and awareness is highlighted. Educating both staff and people with ID about the early signs and symptoms of cancer and the importance of a healthy lifestyle as a protective factor may help lead to more informed healthier lifestyle choices and lower cancer risk and morbidity.

Background: While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs. Method: A retrospective study of medical files of people who died between January 2002 and July 2007. Results: One or more end-of-life decisions were taken in 27 out of 47 cases. A non-treatment decision was taken for seven residents, possibly shortening life expectancy in some cases. The family was involved in decision making in half of the 27 cases. No information was found about the process of end-of-life decision making. There was no evidence in the notes that any of the people with IDs was asked for his or her own opinion in taking an end-of-life decision. Conclusion: This study demonstrates that medical end-of-life decisions played a part in significant numbers of people with IDs who have died within this centre, but further studies are needed to establish decision-making processes.

Background: Executive functioning (EF) is an important concept in cognitive psychology that has rarely been studied in people with intellectual disabilities (IDs). The aim of this study was to examine the validity of two test batteries and the structure of EF in this client group. Methods: We administered the children's version of the Behavioural Assessment of the Dysexecutive Syndrome (BADS-C) and the Cambridge Executive Functioning Assessment (CEFA) for people with ID, to 40 participants who attended day centres for people with mild to moderate learning disabilities [mean full-scale intelligence quotient (IQ) = 59]. The BADS-C consists of six EF subtests while the CEFA contains eight EF (including two executive memory) subtests and four memory subtests. IQ and receptive language ability were also assessed. The results were subjected to principal components analysis, and regression analysis was used to examine the relationship of the ensuing factors to other cognitive variables. Results: Scores on both sets of EF tests were only weakly related to receptive language ability, and even more weakly related to IQ. Scores on the BADS-C were substantially lower than predicted from the published norms for people in higher IQ ranges, and many participants scored zero on three of the six subtests. This potential floor effect was less evident with scores on the CEFA. Principal components analyses produced one usable factor for the BADS-C, and two factors for the CEFA that differed in both the extent of involvement of working memory and the predominant sensory modality. A combined analysis of the subtests retained from both analyses produced three factors that related uniquely to aspects of IQ and memory. Conclusions: The CEFA is suitable for use with people with mild to moderate learning disabilities, whereas the BADS-C is at the lower limit of usability with this client group. The lower-than-expected scores observed on the BADS-C may indicate that people known to learning disability services may be more impaired than people of comparable IQ not known to services. The structure of EF seen in people with IDs closely resembles a model of EF in the general population that has received a broad level of support.

People with intellectual disabilities (IDs) have been defined as "socially excluded" and policies of "social inclusion" invoked to counter this through a focus on paid work and independent living. For many people with IDs this is either not desired or not possible, and as a result many have sought out alternative spaces and activities of inclusion. The paper provides a critique of social exclusion and inclusion, and then goes onto examine (using two case studies) the ways in which people with IDs develop feelings of attachment and belonging within artistic spaces. The paper concludes that not only do these spaces provide mostly positive outcomes for individual people, but also have a potential role in "reinscribing" the social and cultural understanding of people with IDs.

Background: Staff explanations about challenging behaviours of people with intellectual disabilities are purported to play a significant role in the way they respond to them. Despite attempts made in research to understand the mechanisms of causality, a lack of association between attributions, emotions and behaviours is reported. This study investigates these relationships within a broader framework including attributions in the transactional stress model of Lazarus and Folkman. Method: A qualitative design has been selected; semi-structured interview format was used in order to investigate implication of attributions in stress regarding Weiner's model of helping behaviour. A case study method has been adopted to allow consideration of ecological data, a case study representing a special encounter with a challenging behaviour. Categorical analysis was conducted. Results: The results suggest three main issues. First, it appears that Weiner's model is too restrictive in order to explain the complexity of contextualised encounters. Second, a need to differentiate types of attributions within a temporal perspective is highlighted. Finally, consideration of the coping role of attributions is suggested. Conclusions: A need to extend the research concerning attribution is suggested. The insertion of research into ecological contexts and the introduction of coping concept regarding staff attributions of challenging behaviours would allow a broader view of the role of attributions.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: There is increasing recognition of depression in people with intellectual disabilities (ID). There is a need to develop well-standardised self-report measures for both clinical and research purposes. This paper presents some psychometric properties of the Hospital Anxiety and Depression Scale (HADS) adapted for use with people with ID. The anhedonic emphasis in the depression scale of the HADS may be particularly useful for people with ID who present with high rates of physical co-morbidity. Method: A total of 197 people with ID completed an adapted HADS; 32 participants also completed the Zung Depression Scale and 42 also completed the Glasgow Depression Scale. Results: The obtained factor structure is similar to the original form of the scale used with people without ID. However, the underlying question wording of the HADS, where most depression items are phrased positively and most anxiety items are phrased negatively, makes clear interpretation of the factor structure difficult. The HADS has an adequate internal reliability and correlates well with other self-report measures of depression. Conclusions: The HADS may need further adaptation; however, the measurement of anhedonia is a useful addition to the self-report measures of depression available for people with ID.

Introduction: Previous studies have shown a significant association between familial bereavement and the onset of challenging behaviours and psychopathology in people with intellectual disabilities (ID). However, little work has been done to accurately describe the specific symptoms of grief, in particular symptoms of complicated grief in this population. Consensus criteria for the diagnosis of complicated grief have been drawn up and tested for validity in the general population. Aims: To examine the occurrence of symptoms of complicated grief, and to explore the relationships between complicated grief and bereavement experience. Method: A bereavement history questionnaire and a newly developed measure examining for symptoms of complicated grief were administered to a group of carers of people with mild or moderate ID, who had experienced a parental bereavement within the previous 2 years. The questionnaires were also administered to a matched comparison group, who had not been bereaved. Results/Conclusions: This carer-based comparison study has revealed that bereaved individuals with ID experience complicated grief symptoms following the death of a parent, with one-third of the bereaved group experiencing 10 or more clinically apparent symptoms. In addition, complicated grief symptoms were more likely to occur with higher rates of bereavement ritual involvement. These findings have both clinical and research implications.

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. [ABSTRACT FROM AUTHOR]

Background: Evaluative studies have shown that special units for people with intellectual disabilities (ID) who have challenging behaviour have advantages and disadvantages. There has been no survey of their number or characteristics for nearly 20 years. Methods: A questionnaire was sent to all National Health Service trusts that had ID inpatient beds, and all private or voluntary healthcare establishments providing services for people with mental health problems or ID. This asked for information about the unit, its residents and the views of the unit manager. Results: Forty-four agencies confirmed that they provided assessment and treatment units, of which 38 returned questionnaires. These units served 333 people, of whom 75% had mild or moderate ID. A quarter had been there for more than 2 years. Forty per cent of residents had a discharge plan, and 20% had this and the type of placement considered ideal for them in their home area. The main strengths of the units were identified as the knowledge and experience of the staff and having sufficient staff; the main problems as inappropriate admissions, bed-blocking and the relationship with other services; difficulties with recruiting and retaining staff; the location and environment of the unit; and the mix of residents. Conclusions: There has been an increasing rate of provision of special units, which now predominantly serve people with moderate or mild ID. This model of service provision is becoming more widespread, but the potential problems identified 20 years ago are still present. Areas are identified for further research.

Background: Previous research, and official guidance, has suggested that planning for the transition between children's and adults' services is failing young people with intellectual disabilities and their families in the UK. Youngsters placed away from home in residential schools or colleges are likely to be at even greater risk of poor transition planning and outcomes, yet there is little understanding of what factors parents consider contribute to a smoother transition and what a satisfactory outcome would be. Method: The parents of 15 young people from five areas of the UK were interviewed about what they thought contributed to a satisfactory pathway for their son or daughter from an out-of-area residential school or college on to the next phase of their life. Results: Parents identified four main process issues: being well-connected with other parents or with key professionals; being proactive; having sufficient information; and good forward planning. Most considered a good outcome to be if the young person was happy, fulfilled and stimulated. Conclusions: Parents were clear about what they thought helped, and there was little disagreement between their views. While some of these factors have been previously identified regarding the transition of disabled youngsters, they raise some unique issues for families with a youngster educated in an out-of-area residential school or college.

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).