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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 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: 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: 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: 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]

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]

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]

Abstract: 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). [ABSTRACT FROM AUTHOR]

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: 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: 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 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: 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: 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 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. [ABSTRACT FROM AUTHOR]

Background: Problems and limitations of movement in individuals with ID are highly common, which particularly may cause the loss of basic performance and limit the person's independence in doing their daily activities. The purpose of this study was to examine the effect and durability of functional exercises on balance evaluation systems test (BESTest) scores of individuals with ID. Methods: In the present study, 34 participants with ID were selected randomly and divided into three groups: training groups [unstable group (UG); n = 12; age = 21.46 ± 5.37 years and stable group (SG); n = 12; age = 18.50 ± 2.11 years] or the control group (CG; n = 10; age = 19.50 ± 1.27 years). The postural stability measure was collected with the BESTest. The training groups did the functional exercises for 8 weeks, 3 days/week and 1 h/day. The control group did not experience any training. Statistical analysis was performed in SPSS 22 software on a significance level (P < 0.05). Results: Both UG and SG training improved the outcome measures [biomechanical constraints (F = 14.04; P = 0.001), limits of stability/verticality (F = 54.39; P = 0.001), postural responses (F = 26.28; P = 0.001), anticipatory postural adjustment (F = 22.72; P = 0.001), stability in gait (F = 51.95; P = 0.001), sensory orientation (F = 83.87; P = 0.001) and total score (F = 114.1; P = 0.001)]. These improvements were maintained at a 1‐month follow‐up, although the effect was slightly reduced. The results showed that the training group at an unstable level has more balanced improvement compared to the training group at a stable level. Conclusion: This study presents evidence that functional exercises can be recognised as a comprehensive and effective mediator in the improvement of balance in individuals with ID and also affect performance and movement activities. [ABSTRACT FROM AUTHOR]

Background: Physical‐activity approaches for people with intellectual disabilities (ID) are more likely to be effective and sustainable if they also target direct support professionals' behaviour. However, no tools to measure the behavioural determinants for direct support professionals are available as of yet. This study aims to construct a self‐report tool to measure direct support professionals' behavioural determinants in physical‐activity support for people with ID and to analyse its psychometric properties. Methods: The tools' sub‐scales and items corresponded with a proposed conceptual model. A pilot study was carried out to investigate and improve content validity. Construct validity and measurement precision were examined using item response theory models with data from a convenience sample of 247 direct support professionals in the support of people with ID. Results: Results supported the three theory‐driven behaviour scales and indicated reasonable to good construct validity. The marginal reliability for the scales ranged from 0.84 to 0.87, and adequate measurement precision along the latent continua was found. Conclusions: The tool appears to be promising for measuring the behavioural determinants of direct support professionals for the physical‐activity support of people with ID and has potential as a tool for identifying areas to focus on for interventions and policies in the future. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [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 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. [ABSTRACT FROM AUTHOR]

Background Sleep–wake problems and depressive symptoms are common in people with intellectual disabilities (IDs) and are thought to be related to the unstable sleep–wake rhythm in this population. Previously, we showed that after increasing environmental light exposure, mid-sleep and sleep onset advanced, and mood improved over a period of 14 weeks after installing environmental dynamic light installations in the living room of people with IDs. We invited participants of that short-term study to take part in the current study on sleep–wake rhythm, mood and behaviour in older adults with IDs 1 year after installing environmental dynamic light installations in the common living rooms of six group homes. Methods A pre–post study was performed from October 2017 to February 2019. We included 45 participants (63.5 ± 8.5 years, 67% female) from six group home facilities who provided data at baseline (9, 4 and 1 weeks prior to installing light installations), short term (3, 7 and 14 weeks after installing light installations) and 1 year (54 weeks after installing light installations). Wrist activity was measured with actigraphy (GENEActiv) to derive the primary outcome of interdaily stability of sleep–wake rhythms as well as sleep estimates. Mood was measured with the Anxiety, Depression and Mood Scale. Behaviour was measured with the Aberrant Behaviour Checklist. Results One year after installing dynamic lighting, we did not find a change in interdaily stability. Total sleep time decreased (β = −25.40 min; confidence interval: −10.99, −39.82), and sleep onset time was delayed (β = 25.63 min; confidence interval: 11.18, 40.08). No effect on mood or behaviour was found. Conclusions We did not find a change in sleep–wake rhythm, mood or behaviour in older persons with IDs living in care facilities 1 year after installing the light. We did find evidence for a long-term effect on sleep duration and sleep timing. The results have to be interpreted with care as the current study had a limited number of participants. The need for more research on the long-term effects of enhancing environmental light in ID settings is evident. [ABSTRACT FROM AUTHOR]

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 selfdetermination 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. [ABSTRACT FROM AUTHOR]

Background: Efforts to synthesise existing knowledge concerning the effects of exercise interventions on obesity (i.e. changes in body weight and composition) have been made, but scientific evidence in this matter is still limited. This systematic review and meta‐analysis aims to identify and critically analyse the best available evidence regarding the use of physical exercise as a strategy to attenuate obesity through its effects on adiposity‐related anthropometric parameters in people with intellectual disability (ID). Methods: Following the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines, a literature search was performed using PubMed, Scopus, SPORTDiscus, CINAHL and the Cochrane Library through specific keywords up to July 2020. The search adhered to the population, intervention, comparison and outcome strategy. Randomised controlled trials addressing the effects of the exercise intervention on adiposity‐related anthropometric parameters (body mass index, waist circumference, waist–hip ratio, fat percentage or body weight) in children, adolescents and adults with ID were included. The methodological quality of the studies found was evaluated through the PEDro scale. Results: A total of nine investigations with children and/or adolescents (10–19 years) and 10 investigations with adults (18–70 years) were selected, mostly experiencing mild and moderate ID. Methodological quality was fair in 13 of these publications, good in five and excellent in one. Seventeen trials reported comparable baseline and post‐intervention data for the intervention and control groups and were included in the meta‐analysis. In nine studies, the intervention group performed a cardiovascular training programme. Five papers described a combined training programme. Two trials executed whole‐body vibration training programmes, and one publication proposed balance training as the primary intervention. According to the meta‐analysis results, the reviewed studies proposed exercise modalities that, in comparison with the activities performed by the participants' in the respective control groups, did not have a greater impact on the variables assessed. Conclusions: While physical exercise can contribute to adiposity‐related anthropometric parameters in people with mild and moderate ID, these findings show that exercise alone is not sufficient to manage obesity in this population. Multicomponent interventions appear to be the best choice when they incorporate dietary deficit, physical activity increase and behaviour change strategies. Finding the most effective modality of physical exercise can only aid weight loss interventions. Future research would benefit from comparing the effects of different exercise modalities within the framework of a multicomponent weight management intervention. [ABSTRACT FROM AUTHOR]

Background: During the COVID‐19 outbreak, service providers in the Netherlands had to switch towards providing remote support for people with intellectual disabilities living independently. This study aims to provide insight into the use of online support during the outbreak. Methods: We analysed quantitative data on planned and unplanned contacts between the online support service DigiContact and its service users. Results: The results indicate that the COVID‐19 outbreak and the related containment measures had a strong impact on online support use, specifically on the unplanned use of online support. Conclusion: Offering online support as a standard component of services for independently living people with intellectual disability enables service providers to be flexible and responsive towards fluctuations in both support needs and onsite support availability during a social crisis such as COVID‐19. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Although romantic or sexual attraction is a major research topic in the general population, little is known about people with intellectual disabilities' (ID) views of attractiveness. Methods: Fifty‐eight participants (16–40 years) took part in this exploratory study, 29 with ID and 29 without ID. Participants were shown 50 images of men or women's faces and asked to rate how attractive they thought the faces were. Results: A strong association was found between what men and women with ID and those without ID considered attractive in romantic partners. However, people with ID were more likely to consider themselves desirable to others. Conclusions: The findings suggest that people with mild ID make the same subtle judgements about facial attraction as other individuals. [ABSTRACT FROM AUTHOR]

Background: Mothers of people with intellectual disabilities (IDs) face exceptional challenges and may be more prone to experiencing mental ill‐health compared with mothers of typically developing people. These mental ill‐health problems may differ at different stages of the caregiving trajectory. However, there is no evidence synthesis on this topic. We aimed to systematically review evidence in this area and identify gaps in the existing literature. Method: Prospero registration: CRD42018088197. Medline, Embase, CINAHL and PsycINFO databases were searched. No time limits were applied. Studies were limited to English language. Inclusion criteria were studies of mothers of people with IDs that also included a comparison group of mothers of typically developing/developed children. Data were extracted from selected studies using a structured database. Study selection and quality appraisal were double rated. Where possible, meta‐analyses were performed. Results: Of the retrieved articles, 32/3089 were included, of which 10 reported on anxiety, 21 on depression and 23 on other indicators of mental ill‐health. Overall, previous studies reported that mothers of people with IDs experienced poorer mental health as compared with mothers of typically developing people. Meta‐analyses revealed significant findings for anxiety, depression, parenting stress, emotional burden and common mental disorders, but not for somatic symptoms. However, there was a considerable heterogeneity; hence, interpretation of results should be cautious. Identified gaps included scarce research on mental ill‐health of mothers of adults with IDs at different stages of the caregiving trajectory. Conclusions: There is evidence of poorer mental ill‐health in mothers of people with IDs compared with mothers of typically developing people, but lack of focus on different stages of the caregiving trajectory, methodological inconsistencies between studies and lack of robust studies pose limitations. This highlights the need both for improved support for mothers of people with IDs and for further methodologically robust research. [ABSTRACT FROM AUTHOR]

Abstract: 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. [ABSTRACT FROM AUTHOR]

Background: Shared decision‐making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision‐making about their care and treatment. Method: In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision‐making with people with ID in the last phase of life. Results: Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end‐of‐life decisions, such as foregoing life‐sustaining treatment, do‐not‐attempt‐resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision‐making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision‐making in palliative care for people with ID were defined. Conclusion: Although the importance of involving people with ID in the decision‐making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life. [ABSTRACT FROM AUTHOR]

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 extent 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. [ABSTRACT FROM AUTHOR]

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 people’s 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. [ABSTRACT FROM AUTHOR]

Abstract: 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. [ABSTRACT FROM AUTHOR]

Background Solution- Focused Brief Therapy ( SFBT) is a form of behaviour therapy that focuses on evoking desired behaviour rather than on diminishing existing problem behaviour. SFBT has a number of advantages that makes it attractive for use with people who have intellectual disabilities ( ID). These advantages include: focus on empowerment for the person, unique intervention strategies for each person based on their particular skills, and recognition of the expert status of the individual identified as the patient resulting in a sense of self-efficacy. Methods To investigate the effects of SFBT, we conducted a controlled pre- and post-test and follow-up study with 20 people with mild ID ( MID) receiving SFBT and 18 people with MID receiving care as usual ( CAU). We expected that SFBT could help people with MID with (1) reaching treatment goals; (2) improving quality of life (i.e. psychological and social functioning); (3) reducing maladaptive behaviour; and (4) increasing resilience (autonomy and social optimism). Results Two of the 20 clients terminated SFBT prematurely. Most clients receiving SFBT (13 of 18 clients) showed clinically relevant progressions (more than two points on a 1 to 10 scale) towards their treatment goals after SFBT and at follow-up, an additional client showed clinically relevant progress (total of 14 of 18 clients). Directly after therapy, the SFBT group performed statistically significantly better than the CAU group on psychological functioning, social functioning, maladaptive behaviour, autonomy and social optimism. The effect sizes of these improvements were medium to large. At 6-week follow-up, the improvements in psychological functioning, social functioning and maladaptive behaviour in the treatment group were still statistically significant compared with CAU, with medium to large effect sizes. Conclusions Although the study had limitations because of the short follow-up period and the non-random selection of participants, the statistically significant differences between the SFBT and CAU groups and the medium to large effect sizes, indicate the potential effectiveness of SFBT for people with MID. [ABSTRACT FROM AUTHOR]

Background: Access to information and communication technologies (ICTs) is often thought to enhance the lives of people with intellectual disabilities (ID) and is considered an important aspect of digital inclusion. However, inclusion practices often fail to address societal inequalities that lead to and sustain exclusion. The aim of this research was to enhance understandings of the relationships people with ID form with technology by critically analysing the underlying assumptions of inclusion practices. Method: We employed a post‐qualitative approach to reanalyse previously collected data from face‐to‐face interviews with 10 Australian adults with ID who attended a community literacy programme about their technology use in their daily lives. Two of social theorist Sara Ahmed's key concepts were used to analyse these data: (1) 'stickiness' of emotions, where certain (socially dominant) emotions are considered to attach to objects over time (e.g. mobile phone use is normal/good) and (2) 'fit' between people and objects, where there is a sense of comfort when objects are designed for people like you – those outside the 'norm' experience discomfort and a sense of being 'othered' in their interactions with such objects which do not fit them. Results: Our analysis identified how people with ID often attributed positive feelings to technology even when they had seemingly negative interactions with their devices (e.g. they could not use certain features, caregivers acted as gatekeepers to access). The positive associations were likely the outcome of implicitly held understandings that society highly values technology (Ahmed's stickiness of emotions). Although some participants accessed technology without difficulty, others experienced discomfort due to difficulties using devices that were not designed for them (Ahmed's fit between people and objects). Importantly, some participants had access to technology and the technical skill to use ICTs, but other factors, such as not having many friends, impacted their ability to use their devices in meaningful ways. Conclusion: Our analysis suggests that digital inclusion practices focused on providing access to technology may unintentionally harm in ways that are not immediately apparent when working with people with ID. Harms might include further marginalisation or 'othering' of people with ID. It is important to recognise that well‐meaning attempts to encourage use of ICTs may be counterproductive if they lead to experiences of marginalisation. To avoid this, inclusion practices could focus beyond access to devices, and the ability to use them, to include considerations of the multiple socio‐emotional effects. What is a good fit is not entirely predeterminable, exploration of the possibilities for what will work well for any individual requires experimentation and creativity, and a careful attention to unintended effects. Beyond this, the development of new technology should consider how to diversify devices that often fail to fit people with disabilities. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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). [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). Method: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre‐structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). Results: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do‐not‐attempt‐resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life‐sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. Conclusions: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care. [ABSTRACT FROM AUTHOR]

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 < 0.0001), respectively. Thirty‐six participants underwent a dual‐energy X‐ray absorptiometry scan, which showed osteoporosis in 23.7% and osteopenia in 52.6%. Participants on vitamin D had higher BMD than those who were not, a statistically significant difference when confounders (lack of mobility and hypogonadism) were removed. BMD was significantly different according to mobility, particularly in wheelchair users, in whom hip BMD was 33% lower (P < 0.0001) than in participants with normal mobility. Participants still taking vitamin D showed a 6.1% increase in BMD at the spine (P = 0.003) after mean [SD] 7.4 [1.5] years vitamin D treatment. Conclusions: In people with IDs and previous vitamin D deficiency, BMD increases on long‐term vitamin D supplementation. However, additional strategies must be considered for osteoporosis and fracture prevention in this population. [ABSTRACT FROM AUTHOR]

Background Sexual development plays a vital part in young people's emotional adjustment. Method This study compared the sexual understanding of 30 adolescents with mild intellectual disabilities (ID) and 30 non-disabled adolescents, along with their reports of where they obtained sexual information, and the nature of their social networks and support. Results As expected, the non-disabled young people had superior levels of knowledge. However, an interaction was found between group and gender. The non-disabled young women had a better grasp of sexual matters than men, whereas the opposite was the case for those with ID. The non-disabled young people reported more formal and informal sources of sexual information and described larger social networks than those with ID. Conclusions These findings highlight the need to tackle the barriers to sexual knowledge faced by young people with ID, and the need to take account of the broader social context of their lives when doing so. This includes the attitudes to the developing sexuality of young women with ID in particular. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background Previous studies have suggested different patterns of associations between psychiatric symptoms and problem behaviours in people with intellectual disabilities (ID). The aim of this study was to investigate which problem behaviours are associated with specific psychiatric symptoms and the relative strength of these specific associations. Method A cross sectional survey using the Psychiatric Assessment Schedule for Adults with Developmental Disabilities Checklist and the Disability Assessment Schedule was carried out in a sample of 214 adults with ID. Results Self-injurious and, to a lesser extent, aggressive problem behaviours were most associated with affective type symptoms. Screaming and destructive behaviours tended to be more associated with autism-related social impairment rather than conventional psychiatric symptoms. Conclusions This study gives further evidence of associations between psychiatric symptoms and specific problem behaviours in people with ID. It may be particularly useful to consider the diagnosis of affective disorders if a person with ID shows self-injurious or aggressive behaviours. [ABSTRACT FROM AUTHOR]