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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: 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 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: 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: 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]

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 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: 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: 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]

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 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: 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]

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]

Background At the level of policy recommendation, it is agreed that people with intellectual impairments ought to be given opportunities to make choices in their lives; indeed, in the UK, the Mental Capacity Act of 2005 enshrines such a right in law. However, at the level of practice, there is a dearth of evidence as to how choices are actually offered in everyday situations, which must hinder recommendations to change. Method This qualitative interactional study, based on video recordings in British residential homes, combines ethnography with the fine-grained methods of Conversation Analysis. Results We identify six conversational practices that staff use to offer choices to residents with intellectual disabilities. Conclusions We describe the unwanted consequences of some of these practices, and how the institutional imperative to solicit clear and decisive choice may sometimes succeed only in producing the opposite. [ABSTRACT FROM AUTHOR]

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

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

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

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

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

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

Background: People with intellectual disabilities (IDs) or autism are at great risk of being victims of physical and sexual abuse. This study uses transcriptions of real‐life investigative interviews to examine the interview techniques (e.g. question type) used in investigative interviews of these groups of alleged victims. Methods: A national sample of transcribed investigative interviews (N = 96) of alleged victims with mild ID (n = 48, age 5–70 years old), moderate ID (n = 18, age 14–43 years old) and autism (n = 16, age 5–50 years old) was analysed. Results: The study shows a preponderance of alleged sexual offences (70.7%) and reveals that open‐ended questions account for only 2.6% of the total number of questions asked. The interviewers relied heavily on yes/no (53.4%) and directive questions (32.2%). Suggestive questions (8.6%) were frequently used. Conclusions: The use of question type varied considerably within and across the diagnostic group. The study reveals the need for a more in‐depth analysis of variables that influence investigative interviews of people with cognitive impairments. [ABSTRACT FROM AUTHOR]

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

Background: Staff supporting individuals with intellectual disabilities are at risk of burnout symptoms. Evidence suggests an association between exposure to challenging behaviours of individuals with intellectual disabilities and burnout symptoms of staff, but the protective role of staff psychological resources in this relation has been understudied. Method: We investigated the association between exposure to challenging behaviours and burnout symptoms of staff and the direct and moderating effects of several psychological resources. Staff (N = 1271) completed an online survey concerning burnout symptoms (subscale Emotional Exhaustion of the Maslach Burnout Inventory), exposure to challenging behaviours and a range of potential psychological resources. We examined main and moderating effects with multilevel analyses. In order to control for the multiple comparisons, P values corrected for false discovery rate (PFDR) were reported. Results: We found a direct relation between exposure to challenging behaviours and increased levels of burnout symptoms in staff (b =.15, t(670) = 4.466, PFDR <.0001). Perceived supervisor social support (b = −.97, t(627) = −7.562, PFDR <.0001), staff self‐efficacy (b = −.23, t(673) = −3.583, PFDR <.0001), resilience (b = −.19, t(668) = −2.086, PFDR <.05) and extraversion (b = −.20, t(674) = −3.514, PFDR <.05) were associated with reduced burnout symptoms. None of the proposed psychological resources moderated the association between exposure to challenging behaviours and burnout symptoms of staff. Conclusions: Of the psychological resources found to be associated with reduced risk of burnout symptoms, staff self‐efficacy and access of staff to supervisor social support seem to be the factors that can be influenced best. These factors thus may be of importance in reducing the risk of developing burnout symptoms and improving staff well‐being, even though the current study was not designed to demonstrate causal relations between psychological resources and burnout symptoms. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

Background: Muscle strength is both a strong predictor for future negative health outcomes and a prerequisite for physical fitness and daily functioning of adults with ID. Therefore, it is important to be able to monitor the muscle strength of adults with ID over time. The aim of this study is to assess the responsiveness of five field tests that measure muscle strength and endurance (grip strength, hand‐held dynamometry of leg extension and arm flexion, 10RM‐test of the seated squat and the biceps curl, 30‐s chair stand and the 5‐times Chair stand) in adults with ID after a 24‐week resistance‐exercise training (RT) programme. Method: The responsiveness of the five muscle strength and endurance tests was assessed by correlating the change scores of the five tests with the slope of the training progression of specific exercises within the RT‐programme, namely, the step up, seated squat, biceps curl and triceps curl. Results: The 10RM‐test of the seated squat was significantly correlated with the step up (R = 0.53, P = 0.02) and the seated squat (R = 0.70 P = 0.00). None of change scores on the other tests was significantly correlated with the training progression of the exercises. Conclusion: The 10RM test of the seated squat could potentially be used to evaluate the effects of an RT‐programme in adults with ID. Responsiveness of the grip strength, hand held dynamometry, 10RM‐test of the biceps curl, 30‐s chair stand and the 5‐times chair stand could not yet be confirmed. [ABSTRACT FROM AUTHOR]

Background Recent research in the USA and UK indicates that person-centred planning (PCP) can lead to improvements in lifestyle-related outcomes for people with intellectual disabilities (ID). It is clear, however, that the introduction of PCP does not have an equal impact for all participants. The aim of the present paper was to identify factors associated with the probability of delivering a plan and with improvements in outcomes for those who did receive a plan. Methods Information on the life experiences of participants was collected over a period of approximately 2 years for a cohort of 93 adults with ID. Results There were powerful inequalities in both access to and the efficacy of PCP in relation to participant characteristics, contextual factors and elements of the PCP process. Conclusions Results are discussed in relation to implications for policy and practice for increasing the effectiveness of PCP and reducing inequalities in the life experiences of people with ID. [ABSTRACT FROM AUTHOR]

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

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

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

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

Background: The online mindset intervention The Growth Factory (TGF) has shown promising effects—increasing growth mindsets and perseverance and decreasing mental health problems among youth with intellectual disabilities (ID). Studying moderators and mediators of intervention effects is essential to elucidate for whom and why TGF works. Using a randomised controlled trial design, we examined youth's baseline mindset, gender, age, level of ID and intervention satisfaction as moderators of TGF effects and examined whether the intervention effects of TGF on improvements in mental health were mediated by perseverance. Methods: The sample consisted of 119 participants with mild to borderline ID (Mage = 15.83; SD = 2.23), randomly assigned to the intervention (n = 60) or passive control group (n = 59). Participants reported mindsets, perseverance, internalising, externalising, attention and total mental health problems at pre‐test, at post‐test and at 3‐month follow‐up. Additionally, youth in the intervention group graded their satisfaction with a score at the end of each session. Results: Findings indicated that the effectiveness of TGF was not affected by participants' baseline mindsets, age and ID level. TGF was more effective in reducing internalising problems in girls and increasing perseverance in boys. In addition, in the intervention group TGF was more effective in improving internalising, externalising and total mental health problems for youth who reported higher levels of intervention satisfaction at post‐test. Finally, TGF indirectly decreased internalising and externalising problems at follow‐up through improvements in perseverance reported at post‐test. Conclusions: TGF offers a universal, 'add‐on' mindset intervention complementing usual care programmes. It improves mindsets, perseverance and mental health in youth with ID. Both practical and theoretical implications are discussed. [ABSTRACT FROM AUTHOR]

Background: Evidence‐based interventions to improve the sleep–wake rhythm, mood and behaviour in older adults with intellectual disabilities (ID) are limited. Increasing light exposure has been shown to be effective in improving the sleep–wake rhythm, mood, and behaviour in other populations. The current study investigates the effect of installing environmental dynamic lighting in common living rooms of care facilities on sleep–wake rhythm, mood, and behaviour in older adults with ID. Methods: A non‐randomised, non‐concurrent, multiple baseline study was performed from October 2017 to May 2018. Fifty‐four participants [mean (SD) age of 63.42 (8.6) years, 65% female] in six care facilities were included. All participants had three baseline measurements (Weeks 1, 5 and 9). Dynamic lighting was installed in Week 10, after which three intervention measurements took place (Weeks 12, 17 and 24). Sleep characteristics and the sleep–wake rhythm were assessed using actigraphy (GENEActiv). Mood was measured with the Anxiety, Depression and Mood Scale (ADAMS) and behaviour with the Aberrant Behaviour Checklist (ABC). Results: Mixed‐effect regression analysis showed a worsening of the primary outcome interdaily stability (P = 0.001). This could be attributed to one care facility, whereas interdaily stability did not change in the other care facilities (P = 0.74). Dynamic lighting led to earlier mid‐sleep (P = 0.003) and sleep onset (P <.0001) and improved mood as indicated by lower scores on the ADAMS depression (−0.64 SD, P < 0.001) and social avoidance (−0.47 SD, P = 0.004) subscales. The prevalence of screening above cut‐off for depression decreased from 23 to 9.8% (OR =.16, P = 0.003). For behaviour, a decrease was seen in hyperactivity (−0.43 SD, P < 0.001), lethargy (−0.35 SD, P = 0.008) and irritability (−0.33 SD, P <.001) as measured with the ABC. No adverse effects were reported. Conclusion: Installing dynamic lighting in common living areas for older adults with ID improved the mood and behaviour of the residents up to 14 weeks after placement. Integrated dynamic lighting is a promising, undemanding and potentially effective addition to improve mood and behaviour in care organisations for people with ID, but does not seem to do so by improving sleep or sleep–wake rhythms. [ABSTRACT FROM AUTHOR]

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

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. [ABSTRACT FROM AUTHOR]

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

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]