Search

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: 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 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 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: 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]

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: 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 People with intellectual disabilities (IDs) die at younger ages than the general population, but nationally representative and internationally comparable mortality data about people with ID, quantifying the extent and pattern of the excess, have not previously been reported for England. Method We used data from the Clinical Practice Research Datalink database for April 2010 to March 2014 (CPRD GOLD September 2015). This source covered several hundred participating general practices comprising roughly 5% of the population of England in the period studied. General practitioner (GP) records identified people diagnosed by their GP as having ID. Linked national death certification data allowed us to derive corresponding mortality data for people with and without ID, overall and by cause. Results Mortality rates for people with ID were significantly higher than for those without. Their all-cause standardised mortality ratio was 3.18. Their life expectancy at birth was 19.7 years lower than for people without ID. Circulatory and respiratory diseases and neoplasms were the three most common causes of death for them. Cerebrovascular disease, thrombophlebitis and pulmonary embolism all had standardised mortality ratios greater than 3 in people with ID. This has not been described before. Other potentially avoidable causes included epilepsy (3.9% of deaths), aspiration pneumonitis (3.6%) and colorectal cancer (2.4%). Avoidable mortality analysis showed a higher proportion of deaths from causes classified as amenable to good medical care but a lower proportion from preventable causes compared with people without ID. International comparison to areas for which data have been published in sufficient detail for calculation of directly standardised rates suggest England may have higher death rates for people with ID than areas in Canada and Finland, and lower death rates than Ireland or the State of Massachusetts in the USA. Conclusions National data about mortality in people with ID provides a basis for public health interventions. Linked data using GP records to identify people with ID could provide comprehensive population-based monitoring in England, unbiased by the circumstances of illnesses or death; to date information governance constraints have prevented this. However, GPs in England currently identify only around 0.5% of the population as having ID, suggesting that individuals with mild, non-syndromic ID are largely missed. Notably common causes of death suggest control of cardiovascular risk factors, epilepsy and dysphagia, management of thrombotic risks and colorectal screening are important areas for health promotion initiatives. [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 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 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: Social restrictions and service closures from COVID‐19 have negatively impacted social inclusion and well‐being for some people with intellectual disabilities (IDs). Methods: The fourth wave of a national longitudinal study on ageing in people with ID in Ireland was interrupted during the COVID‐19 outbreak. Social inclusion data for pre‐existing participants interviewed before COVID‐19 (n = 444) were compared with data for pre‐existing participants interviewed during/after lockdown (n = 62). Results: More people interviewed after lockdown reported frequent family contact. Significantly greater numbers in the post‐lockdown group reported access to and use of technology than the pre‐lockdown group. Technology use was higher among those living in grouped residences supported by services compared with individuals living independently or with family. Conclusions: During the early stages of the COVID‐19 pandemic in Ireland, many older adults with ID stayed connected with family and reported rates of contact higher than were reported by others before COVID‐19. This connection may have been supported by a significant increase in technology use during the pandemic. However, uneven use of technology may disadvantage some including individuals living with family or independently. Given that COVID‐19 restrictions are likely to continue to restrict social opportunities, increased digital support may assist more people with ID to use technology to maintain their social connections. [ABSTRACT FROM AUTHOR]

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

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

Abstract: Background: Both individuals with intellectual disabilities (ID) and staff may be more inclined to use manual signs during formal than informal activities. In addition, the sign use of individuals with ID and staff is positively related. It is unclear if activity type and the sign use of staff interact as they shape the sign use of individuals with ID. Methods: Through non‐continuous partial interval coding, we observed frequency of manual sign usage in adults with ID during communicative activities, non‐communicative activities and mealtimes in four special schools and 4‐day centres. Using loglinear analysis and partial associations, we measured how sign use varied by activity between the people with ID and the staff. Results: When staff used signs, clients and students did not vary their spontaneous signing rate between types of activities. When staff did not use signs, a differential influence appeared according to the type of activity: clients and students were significantly more likely to also refrain from using signs during mealtimes and leisure or work activities such as crafts (84% to 89% of the time) than during communicative activities such as signing sessions (65% of the time). Conclusions: Reluctance of staff to model sign use seemed to hinder signing implementation by the people with ID. Future studies should take into account various levels of sign prompting and increasing pragmatic functions of individuals' sign use. [ABSTRACT FROM AUTHOR]

Abstract: Background: Intellectual disabilities (IDs) have become a public health concern worldwide, but few studies on rehabilitation service utilisation in this population were conducted in developing countries. We aimed to examine trends and socioeconomic disparities in the utilisation of rehabilitation services among adults with IDs in China. Methods: We obtained data from a population‐based survey by using a multistage, randomised, cluster sampling process to ascertain adults with IDs in 2006 and a selected subsample for follow‐up surveys during 2007–2013. Psychiatrists ascertained individuals with IDs ascertained by intelligence quotient score under 70, deficits in two or more adaptive behaviours and age of onset under 18 years. Results: Overall, the utilisation rate of rehabilitation services significantly increased from 10.1% in 2007 to 33.7% in 2013, with an annual average percentage growth of 34.3% when adjusting for multiple confounders. The mounting trends remained significant in all socioeconomic groups. The growth rates among lower socioeconomic participants were much higher than those among higher socioeconomic participants, and the strength in the association between socioeconomic position (education and region) and rehabilitation service utilisation declined in 2007–2013. Conclusions: This study found an upward trend in rehabilitation service utilisation in Chinese adults with IDs during 2007–2013, and socioeconomic disparities in rehabilitation service use in this population showed a downward trend over time. [ABSTRACT FROM AUTHOR]

Background According to Dutch jurisdiction, individual support plans (ISP) should register the mutual agreements between a person with intellectual disabilities (ID) and a professional service organisation with respect to the support that will be provided. In planning for support, active involvement of both parties is necessary. The current study focuses on the perceptions and experiences of Dutch persons with ID with respect to their involvement in their ISP. Method Data were gathered through semi-structured interviews with 61 people with mild to moderate ID. Participants were recruited in 23 Dutch service provider organisations. A systematic qualitative analysis was performed on the interview transcripts. Results Although persons with ID are present at their ISP meeting, active client involvement in developing, executing and evaluating the ISP is not common practice. Issues of accessibility and lack of control over the process and content of ISP hamper effective involvement of people with ID. Conclusions The study raises questions concerning ISP practices in the Netherlands. The question needs to be addressed as to how to facilitate active involvement of people with ID in planning for support. The results further suggest that support organisations perceive an ISP rather as a formal document to comply with bureaucratic rules than as an instrument of empowerment to enhance control of persons with ID over their own lives. [ABSTRACT FROM AUTHOR]

Background Important work has been carried out adapting cognitive behavioural therapy for people with intellectual disabilities. However, there is a lack of alternative psychological therapies available for people with intellectual disabilities and emotional difficulties. Behavioural activation for depression is less reliant on verbal communication and focuses on increasing purposeful activity and reducing avoidance. Method This feasibility study involved the development and piloting of an adapted manual of behavioural activation for people with intellectual disabilities. The intervention consisted of 10-12 sessions and a key adaptation was that the therapist worked with the clients alongside a significant other in their life, either a paid carer or family member. Baseline, post-intervention (3 months after entering the study) and 6-month quantitative follow-up data were obtained. Primary outcome data were gathered, concerning depressive symptoms, participants' levels of activity and general well-being. Results Twenty-three adults with intellectual disabilities with symptoms of depression were recruited from specialist health services. In terms of acceptability, the behavioural activation intervention was well received and only two individuals dropped out, with a further two lost to follow-up. The main measures of depression appeared to be sensitive to change. Pre- to post-intervention data showed a significant reduction in self-report of depressive symptoms with a strong effect size ( r = 0.78), that was maintained at follow-up ( r = 0.86). Positive change was also obtained for informant reports of depressive symptoms from pre- to post-intervention, with a strong effect size ( r = 0.7). Once again, this positive change was maintained at follow-up ( r = 0.72). Conclusions The study suggested that behavioural activation may be a feasible and worthwhile approach to tackling depression in people with intellectual disabilities. However, a randomised controlled trial would be required to establish its effectiveness, with more sensitive measurement of change in activity. [ABSTRACT FROM AUTHOR]

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

Background Previous studies have found high rates of attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD) and intellectual disability (ID) within the criminal justice system (CJS). However, little is understood about prisoners with neurodevelopmental disorders and difficulties (NDD) or their needs. This study aimed to identify prisoners with NDD and compare their characteristics with prisoners without NDD on a range of socio-demographic and social functioning measures. Method This was a descriptive, cross-sectional study carried out using face-to-face interviews with 240 participants in a London Category C prison. Standardised tools were used to assess prisoners for ADHD, ASD and ID. Results The study identified 87 prisoners who screened positive for one or more type of NDD. Participants with NDD were significantly younger and more likely to be single [(odds ratio) OR = 2.1], homeless (OR = 3.4) or unemployed (OR = 2.6) before they came into prison. They also had poorer educational achievements that those without NDD. Over 80% of those with NDD had a previous conviction or imprisonment. Conclusions The findings confirm the presence of significant numbers of people with NDD in a male prison. Services across the CJS are required for this group; specifically, there is a need for raised awareness among those working in the CJS to improve the recognition of offenders with NDD. Services in the community need to work with individuals with NDD who are at risk of offending, targeting those who are homeless, unemployed and have poor employment opportunities. [ABSTRACT FROM AUTHOR]

Background People with intellectual disabilities ( ID) have unequal access to health care. While systemic efforts are addressing health inequalities, there remains a need to demonstrate that persons with ID can increase their health self-advocacy skills. Method A randomised control design with up to 6-month follow-up was used to evaluate the 3 Rs ( Rights, Respect and Responsibility) health self-advocacy training program for persons with ID ( n = 31). Training involved teaching participants to recognise and redress health rights violations in the context of respect and responsibility. Training materials included Power Point slides and interactive video scenarios illustrating health rights, respect and responsibility problem and non-problems. Two-hour training sessions were conducted twice a week in a group format where participants played a game and answered questions. Results The health rights training group made significantly more correct responses on post training and follow-up tests than the control group. Training effects generalised to untrained scenarios and in situ health interviews. Conclusions The results of this study suggest that persons with ID can learn complex skills related to health self-advocacy. More research is needed to improve in situ generalisation. [ABSTRACT FROM AUTHOR]

Background The expected increase in longevity of individuals with intellectual disabilities (ID) in many countries of the world is a direct result of medical and social advances, which have also extended the longevity of the general population. It is important to assess the need for social services for people with ID across different administrative levels to ensure sufficient resources are allocated to where they are most needed. This study estimates the annual prevalence of older people with ID from 2004 to 2012 and in different counties and municipalities in Sweden, by sex and age group; identifies proxy indicators related to the care of older people with ID in different counties in 2012 in Sweden and analyses the spatial distribution and clustering of municipalities with a high prevalence of older people with ID. Methods Individuals with ID were identified through the national register based on the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments (the LSS act) and the national death register. This study focuses on older individuals aged 55+ during the period of 2004- 2012. The estimated prevalence was calculated at the county and municipality level and plotted on a municipality-level map. Moran's I statistics was used to identify any spatial clustering of municipalities with a large number of individuals with ID. Results The prevalence of ID among older individuals aged 55+ in Sweden increased from 2004 to 2012. The prevalence was consistently higher among men, and the gender gap increased slightly in recent years. Age-specific prevalence estimates showed ID to be higher in younger age groups, and the gender gap decreased in older age groups. The prevalence was higher in northern counties in Sweden (over 500 individuals per 100 000 population aged 55+). Higher prevalence areas were clustered in northern municipalities, whereas municipalities with high prevalence of older individuals with ID in the middle and southern regions of Sweden demonstrated a more widespread distribution. Conclusions The existence of clusters of counties with a high prevalence of older individuals with ID necessitates further assessment of how resources have been allocated to different counties and municipalities in Sweden. Investigations of the quality of social services provided to individuals with ID across different counties in Sweden are warranted. It is important to ensure that high quality supports are being provided to older individuals with ID in order to grant them the same right to healthy ageing as their counterparts living without ID throughout their life course. [ABSTRACT FROM AUTHOR]

Background Reliable ascertainment of intellectual disability (ID) is important to identify those with special needs, in order for those needs to be met in the criminal justice system. Although the Hayes Ability Screening Index (HASI) is valid and widely used for the identification of possible ID, the risk of inter-rater bias between researchers when scoring the HASI has not yet been established. The current paper estimates the inter-rater reliability of the HASI in a sample of Indigenous and non-Indigenous prisoners in Western Australia. Methods We estimated intra-class correlation coefficients (ICC) for the consistency of agreement among three blinded raters using a two-way random-effects model assessing the inter-rater agreement of the HASI. Kappa was also estimated for the dichotomous HASI screening threshold outcome between the raters. Results The HASI exhibited very good within-subject consistency of agreement for Section B (ICC = 0.95; 95%CI:0.94-0.96), Section C (ICC = 0.97; 95%CI: 0.96-0.98) and Section D (ICC = 0.90; 95%CI: 0.87-0.92) subscales and for the total scaled score (ICC = 0.97; 95%CI: 0.96-0.98). The inter-rater reliability of the dichotomous adult ID screening threshold (<85) was also very good (Kappa = 0.95). Conclusions The current study provides new evidence that the HASI has a low risk of bias from between-rater scoring and can be reliably scored by both non-clinicians and clinicians with little training, when administered in prison settings. Pre-scoring training should focus on the more subjective 'clock-drawing' section, in order to maximise inter-rater reliability. [ABSTRACT FROM AUTHOR]

Background This study aims to use 30-day readmission rates to investigate the presumption that men and women with learning disabilities ( LDs, known internationally as intellectual disabilities) receive poorer quality hospital care than their non-disabled peers. Method A 12-month retrospective audit was conducted using Hospital Episode Statistics ( HES) at a single acute hospital in the East of England. This identified all in-patient admissions; admissions where the person concerned was recognised as having a LD; and all emergency readmissions within 30 days of discharge. Additionally, the healthcare records of all patients identified as having a LD and readmitted within 30 days as a medical emergency were examined in order to determine whether or not these readmissions were potentially preventable. Results Over the study period, a total of 66 870 adults were admitted as in-patients, among whom 7408 were readmitted as medical emergencies within 30 days of discharge: a readmission rate of 11%. Of these 66 870 patients, 256 were identified as having a LD, with 32 of them experiencing at least one emergency readmission within 30 days: a readmission rate of 13%. When examined, the healthcare records pertaining to these 32 patients who had a total of 39 unique 30-day readmissions revealed that 69% ( n = 26) of these readmissions were potentially preventable. Conclusion Although overall readmission rates were similar for patients with LDs and those from the general population, patients with LDs had a much higher rate of potentially preventable readmissions when compared to a general population estimate from van Walraven et al. This suggests that there is still work to be done to ensure that this patient population receives hospital care that is both safe and of high quality. [ABSTRACT FROM AUTHOR]

Background: Individuals with Down syndrome (DS) are at much greater risk of developing Alzheimer's disease, and one of the early clinical symptoms of Alzheimer's disease is executive dysfunction. In the general population, cognitive training has shown some promising results in relation to maintaining or improving cognitive processes. There is currently a gap in the literature in relation to cognitive training for adults with DS. Methods: A quasi‐experimental mixed factorial design with partial crossover was used involving an 8‐week intervention period using a brain training programme. Participants were matched on age and then randomly assigned to either the intervention group or the delayed intervention group. Forty adults with DS, aged between 30 and 49 and with a mild or moderate level of intellectual disability, participated in the study. All participants completed baseline measures of executive function, using both neuropsychological assessments and an informant‐rated measure of behavioural executive function. The intervention group first completed the training and then the delayed intervention group. Executive function assessments were repeated for both groups following the training. Results: The study aimed to examine whether a cognitive training programme could have an effect on levels of executive function. While conclusions are limited owing to small sample size, improvement was seen in neuropsychological assessments of executive function following cognitive training. Positive effects reflected in everyday behaviours were not as promising. Conclusions: This study showed that, while it has not been previously an area of focus, individuals with DS can complete a computerised cognitive training programme. Furthermore, the results were promising with significant improvements found in neuropsychological assessments of executive function. These findings need further investigation with a larger sample size and would benefit from the use of a brain imaging component to strengthen the findings. [ABSTRACT FROM AUTHOR]

Background: The prevalence of asthma among athletes with intellectual disabilities, and the asthma knowledge levels of their coaches, is unknown. Methods: Special Olympics Canada athletes completed a demographic questionnaire (n = 208). Athletes who identified as having ever or current asthma completed the Asthma Control Questionnaire and the Mini Asthma Quality of Life Questionnaire and were measured for height, weight and lung function (n = 73). National level coaches (n = 27) completed a questionnaire pertaining to asthma knowledge. Results: The prevalence of ever and current asthma were 35.5% (n = 73) and 21.1% (n = 44), respectively. Athletes with asthma reported that they had inadequately controlled asthma, but good quality of life. Coaches correctly answered 43% true/false questions on the survey, indicating suboptimal asthma knowledge. Conclusions: Athletes with intellectual disabilities appear to have a greater prevalence of asthma than the general population; however, coaches of these athletes appear to have limited knowledge pertaining to asthma and exercise‐induced asthma. [ABSTRACT FROM AUTHOR]

Background: To address limitations and challenges associated with current health surveillance of people with intellectual and developmental disabilities (IDD), this study investigates the use of all‐payer claims data to identify and characterise this population. Method: All‐payer claims data from 2010 to 2014 were used to study people with IDD in New Hampshire. Starting with the Centers for Medicare and Medicaid Services' algorithm, IDD was defined using ICD‐9 diagnosis codes. Additional ICD‐9 codes for developmental disabilities were included to build the knowledge base begun by recent research conducted on Medicaid claimants in five other states. Results: Findings showed the enhanced algorithm offers a replicable and feasible way to conduct health surveillance of people with IDD at the state level. Conclusion: Substantive and significant differences between Medicaid and commercial claimants suggest that using all‐payer claims provides a richer and more complete method for health surveillance of people with IDD. [ABSTRACT FROM AUTHOR]

Background In the national study of multiple registers in 2000, the average prevalence of intellectual disability ( ID) was 0.70%, with marked differences by age group (range 0.38-0.96%) - what are these differences in detail, and can they be understood? Method This study was based on two national health registers and six social benefit registers. Prevalence of ID was calculated by 1-year age cohorts. Results The multiple register prevalence of ID increased steadily from 0.20% in the first life year to 0.74% (male: 0.90%, female: 0.58%) at 10 years. For boys, the rate fell to 0.71% at 11 years. For both sexes, a steady increase was noted in the distribution up to 40 years (male: 0.84%, female: 0.73%), followed by a sharper increase to the maximum prevalence (male: 1.19% at 48 years, female: 1.05% at 50 years). At the pension age of 66 years, a sudden drop to 0.49% occurred for men and women. Different registers gave very different age distributions. Conclusions By examining the data by 1-year age cohorts, and by understanding the role of each register, it could be deduced that a proportion of cases in younger age groups is lacking, and a remarkable proportion of elderly ID persons is missing from the pooled data. The findings were more difficult to interpret, if the data were grouped into bigger age groups. [ABSTRACT FROM AUTHOR]

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

Abstract: Background: Good nutrition knowledge among carers of people with intellectual disability (ID) living in group homes is essential as they have a primary role in food provision for residents. Research on the nutrition knowledge of carers is limited. Method: This cross‐sectional study assessed the level of general nutrition knowledge in a convenience sample of Australian carers (C) of people with ID and compared this to the general Australian community (CM). Nutrition knowledge was evaluated using the validated General Nutrition Knowledge Questionnaire. Total knowledge score as well as performance on instrument sub‐sections (dietary guidelines, nutrient sources, healthy food choices and diet disease relationships) were assessed (expressed as %). Knowledge scores were adjusted for known confounders (age, sex, education level, BMI, living arrangement and English spoken at home) using generalised linear modelling. Results: A total of 589 participants were recruited (C: n = 40; CM: n = 549). Age (C: 40.8 ± 12.1 year; CM: 37.8 ± 13.3 years; P = 0.145), sex distribution (C: 62.5%; CM: 67.2% female; P = 0.602) and English spoken at home (C: 82.5%; CM: 89.6%; P = 0.183) were similar between groups, but BMI (C: 28.5 ± 5.7 kgm−2; CM: 25.3 kgm−2; P = 0.002) was significantly lower and tertiary education (C: 52.5%; CM: 85.1%; P < 0.0005) significantly higher for CM. Total knowledge score (C: 56.6 ± 12.6%; CM: 67.2 ± 12.6%; P < 0.0005) and performance on all instrument sub‐sections (P ≤ 0.004) were significantly lower for carers. This remained after confounder adjustment except for the knowledge of dietary guidelines sub‐section (P = 0.116). Conclusion: Limited carer nutrition knowledge may compromise their ability to plan and adapt meals to support a healthy and appropriate diet for people with ID in group homes. [ABSTRACT FROM AUTHOR]

Abstract: Background: Gait deviations are often seen in adults with intellectual disabilities (ID). Their low physical fitness levels may be associated with these deviations. Understanding the impact of fitness on gait in this population is important for developing interventions to improve gait. In a cross‐sectional study, we assessed the association between multiple physical fitness components and spatiotemporal gait parameters in adults with ID. Method: Gait characteristics of 31 adults (42.77 ± 16.70 years) with ID without Down syndrome were assessed with the GAITRite at comfortable (CS) and fast speed (FS), along with fitness assessments (body composition, muscular endurance, strength, balance, Short Physical Performance Battery). Results: At CS, adults with ID with higher BMI and/or waist circumference spent more time in double support. At FS, those with better muscular endurance took steps faster, those with better balance took bigger steps and strides and those with better Short Physical Performance Battery scores took bigger steps and strides at higher velocity. Conclusions: Body composition was mostly associated with gait at CS, while the other physical fitness components were mostly associated with gait at FS. Better fitness may therefore be more important in more challenging conditions. These insights are useful for developing interventions to improve gait in adults with ID. [ABSTRACT FROM AUTHOR]

Abstract: Background: Adults with intellectual disabilities (IDs) experience high rates of falls and have high rates of gait or balance issues which contribute to falls. Lycra splinting garments (LSGs) have potential to improve gait or balance, but they have never before been tested with adults with IDs who fall due to gait or balance issues. The aim of this study was to test in adults with IDs, the feasibility of using LSGs to improve movement and function and reduce falls, whilst also exploring usability and likely compliance. Method: A convenience sample of nine adults with IDs wore tailored LSGs over a 6‐week assessment period. Laboratory‐based foot clearance, balance, and gait measures were collected pre‐ and post‐LSG‐wear. Falls charts and questionnaires on usability and likely compliance were also completed. Results: Seven participants experienced a reduction in falls during their six weeks of LSG wear; most notably in the group of five participants who wore lycra splinting socks, compared with only two in the group of four who wore lycra splinting shorts or leggings only. Conclusion: Lycra splinting socks are likely to bring about positive outcomes for adults with IDs who fall due to gait/balance issues on an individual case by case basis over time, but further research is required to test this hypothesis under randomised controlled trial conditions. Potential benefits of more intrusive LSGs are outweighed by reported problems with usability and compliance. [ABSTRACT FROM AUTHOR]

Background: Women with intellectual and developmental disabilities (IDD) in the USA are bearing children at increasing rates. However, very little is known whether racial and ethnic disparities in birth outcomes and labour and delivery‐related charges exist in this population. This study investigated racial and ethnic disparities in birth outcomes and labour and delivery‐related charges among women with IDD. Methods: The study employed secondary analysis of the 2004–2011 Healthcare Cost and Utilization Project National Inpatient Sample, the largest all‐payer, publicly available US inpatient healthcare database. Hierarchical mixed‐effect logistic and linear regression models were used to compare the study outcomes. Results: We identified 2110 delivery‐associated hospitalisations among women with IDD including 1275 among non‐Hispanic White women, 527 among non‐Hispanic Black women and 308 among Hispanic women. We found significant disparities in stillbirth among non‐Hispanic Black and Hispanic women with IDD compared with their non‐Hispanic White peers [odds ratio = 2.50, 95% confidence interval (CI): 1.16–5.28, P < 0.01 and odds ratio = 2.53, 95% CI: 1.08–5.92, P < 0.01, respectively]. There were no racial and ethnic disparities in caesarean delivery, preterm birth and small‐for‐gestational‐age neonates among women with IDD. The average labour and delivery‐related charges for non‐Hispanic Black and Hispanic Women with IDD ($18 889 and $22 481, respectively) exceeded those for non‐Hispanic White women with IDD ($14 886) by $4003 and $7595 or by 27% and 51%, respectively. The significant racial and ethnic differences in charges persisted even after controlling for a range of individual‐level and institutional‐level characteristics and were 6% (ln(β) = 0.06, 95% CI: 0.01–0.11, P < 0.05) and 9% (ln(β) = 0.09, 95% CI: 0.03–0.14, P < 0.01) higher for non‐Hispanic Black and Hispanic Women with IDD compared with non‐Hispanic White women with IDD. Conclusions: Our findings highlight the need for an integrated approach to the delivery of comprehensive perinatal services for racial and ethnic minority women with IDD to reduce their risk of having a stillbirth. Additionally, further research is needed to examine the causes of racial and ethnic disparities in hospital charges for labour and delivery admission among women with IDD and ascertain whether price discrimination exists based on patients' racial or ethnic identities. [ABSTRACT FROM AUTHOR]

Background: The study aims to understand system barriers to research participation for people with intellectual disabilities. Methods: A mixed‐methods approach examined the inclusivity of people with intellectual disabilities (IDs) in a random sample of National Institute for Health and Care Research (NIHR) studies conducted in 2019–2020. An online questionnaire (stage 1) was sent to the selected studies lead investigators. An expert by experience panel of 25 people with intellectual disabilities (IDs, stage 2), discussed the stage 1 feedback. Descriptive statistics for quantitative data and thematic analysis for qualitative data was conducted. Results: Of 180 studies reviewed, 131 studies (78%) excluded people with IDs. Of these, 45 (34.3%) study researchers provided feedback. Seven (20%) of the 34 studies which included people with IDs gave feedback. Of all respondents over half felt their study had some relevance to people with IDs. A minority (7.6%) stated their study had no relevance. For a quarter of respondents (23.5%), resource issues were a challenge. Qualitative analysis of both stages produced four overarching themes of Research design and delivery, Informed consent, Resource allocation, and Knowledge and skills. Conclusion: Health research continues to exclude people with IDs. Researchers and experts by experience identified non‐accessible research design, lack of confidence with capacity and consent processes, limited resources such as time and a need for training as barriers. Ethics committees appear reluctant to include people with cognitive deficits to 'protect' them. People with IDs want to be included in research, not only as participants but also through coproduction. [ABSTRACT FROM AUTHOR]

Background Adults with intellectual disabilities (ID) may be at increased risk of developing type 2 diabetes and cardiovascular disease, due to lifestyle factors, medications and other diagnosed conditions. Currently, there is lack of evidence on prevalence and prevention in this population. The aim of this study was to conduct a diabetes screening programme to determine prevalence of previously undiagnosed type 2 diabetes and impaired glucose regulation in people with ID. Methods Screening was conducted in a variety of community settings in Leicestershire, UK. Adults with ID were invited via: general practices; the Leicestershire Learning Disability Register; ID psychiatric services; and some people directly contacted the research team due to publicity about the study. Screening involved collection of anthropometric, biomedical and questionnaire data. Type 2 diabetes and impaired glucose regulation were defined according to (venous) fasting plasma glucose or HbA1c, following current World Health Organisation criteria. Results Nine hundred thirty adults (29% of those approached) participated. Mean age was 43 years, 58% were male and 16% of South Asian ethnicity. Most participants were either overweight or obese (68%). Diabetes status was successfully assessed for 675 (73%) participants: Nine (1.3%, 95% confidence interval 0.6 to 2.5) were found to have undiagnosed type 2 diabetes, and 35 (5.2%, 95% confidence interval 3.6 to 7.1) had impaired glucose regulation. Key factors associated with abnormal glucose regulation included the following: non-white ethnicity and a first degree family history of diabetes. Conclusions Results from this large multi-ethnic cohort suggest a low prevalence of screen-detected (previously undiagnosed) type 2 diabetes and impaired glucose regulation in adults with ID. However, the high levels of overweight and obesity we found emphasise the need for targeted lifestyle prevention strategies, which are specifically tailored for the needs of people with ID. [ABSTRACT FROM AUTHOR]

Background Special Olympics (SO) is commonly cited to play an important role in the lives of individuals with intellectual disabilities (ID). The purpose of the current review was to (a) synthesise key findings regarding the physical, psychological/emotional, social and/or intellectual/cognitive correlates of SO participation for individuals with ID and (b) highlight limitations in the extant research as well as directions for future research. Method A systematic review of electronic databases was undertaken. A total of 46 articles were confirmed to meet study criteria. Quality assessments of included studies were conducted using checklists from the Scottish Intercollegiate Guidelines Network methodology checklists (SIGN 50; SIGN 2008). Results There was a larger amount of support for physical, psychological/emotional and social outcomes as compared with cognitive/intellectual outcomes; however, many studies were confounded by measurement difficulties, sampling procedures and a lack of replicable methods, which hinder generalisation of results. Conclusions This review highlights the need for a continued critical focus on SO programme evaluation research with more rigorous and replicable methods. [ABSTRACT FROM AUTHOR]

Background Little information is available regarding the visits made by persons with profound intellectual disability (PID) to general hospital emergency departments (ED). This study aims to know whether persons with PID who attend ED are given the same type of diagnoses as people with no such disability. Methods Over a period of 18 months, we gathered data from all non-scheduled visits to an ED by persons with PID to identify the reason for consultation (according to the classification used by the Spanish Society for Emergency Nursing) and the final diagnosis upon discharge. The results were compared with data obtained from a control group of people with no ID who attended an ED for any reason during the same period. Results Somatic complaints were the main reason for ED attendance among persons with PID (90% of consultations). These complaints were more often related to the central nervous system than was the case among non-ID patients (16 vs. 4.7%), whereas other kinds of non-central nervous system somatic complaint were less common among persons with PID (74 vs. 91%). A diagnosis implying physical pain was given less often to people with PID than to controls (3 vs. 20%). Conclusions The results suggest that persons with PID are less able to conceptualise and communicate information about their symptoms, especially as regards pain, and that this influences the diagnosis they are given when attending an ED. Professionals working in this environment need to be aware of this possibility so as not to underestimate or overlook such symptoms and the illnesses related to them. [ABSTRACT FROM AUTHOR]

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

Background Person-centred planning has played a key role in the transformation of intellectual disabilities services for more than a decade. The literature has identified clear advantages for service users when service delivery is planned around the individual rather than the user is made to fit into service structures. Researchers however have pointed out that there is a lack of evidence that person-centred planning positively influences outcomes for users. Method Our study examined the application of person-centred planning during transition for young people with intellectual disabilities. We investigated the nature and content of 44 person-centred reviews of transition planning for this population in a local authority in the UK. We carried out a documentary analysis of all person-centred plans and conducted telephone interviews with all families participating in the programme. We focused on the issue of attendance at review meetings and what was discussed during the meetings. Results Analysis of the data shows an increase in the participation of young people and carers at review meetings and a significant shift in topics discussed during the transition planning process compared with previous programmes. However, some of these effects may dissipate once young people are actually leaving school as planning well is not synonymous with having an improved range of placement options. Conclusions The findings suggest that person-centred planning can impact positively on some aspects of transition planning, while it may be too optimistic to expect radical improvement in other area. Key to further improvements is to complement person-centred planning with consistent involvement of all relevant stakeholders in planning for individuals. [ABSTRACT FROM AUTHOR]

Background Obesity is a major health problem in people with intellectual disabilities. It is also widely accepted that low-grade systemic inflammation associated to obesity plays a key role in the pathogenic mechanism of several disorders. Fortunately, physical activity has shown to improve inflammation in people with metabolic syndrome and type 2 diabetes. Accordingly, we assessed the influence of aerobic training on pro-inflammatory cytokines and acute phase proteins in women with Down syndrome. Methods To achieve this outcome, 20 premenopausal obese young women with Down syndrome volunteered for this study. Eleven were randomly assigned to the intervention group and performed a 10-week aerobic training programme, three sessions per week, consisting of a warm-up then a 30- to 40-min treadmill exercise at a work intensity of 55-65% of peak heart rate followed by a cooling-down period. The control group included nine age-, sex- and body mass index-matched women with Down syndrome. Fat mass percentage and fat distribution were measured. Plasmatic levels of tumour necrosis factor ( TNF)-α, interleukin ( IL)-6 and fibrinogen were assessed by commercial enzyme-linked immunosorbent assay kits. C-reactive protein ( CRP) was assessed by nephelometry. Results Plasmatic levels of TNF-α (11.7 ± 1.6 vs. 9.2 ± 1.3 pg/ml; P = 0.022), IL-6 (8.2 ± 1.1 vs. 6.1 ± 0.9 pg/ml; P = 0.014) and high sensitive CRP (0.62 ± 0.11 vs. 0.53 ± 0.09 mg/dl; P = 0.009) were significantly reduced in the intervention group. Further, significant correlations between plasmatic and anthropometric parameters were found. Conclusion A 10-week training programme reduced pro-inflammatory cytokines and acute phase proteins in obese young women with Down syndrome. Long-term, well-conducted studies are still required to determine whether correction of this low-grade inflammation improves clinical outcomes of women with trisomy 21. [ABSTRACT FROM AUTHOR]

Background Anxiety and challenging behaviour ( CB) often occur simultaneously in people with intellectual disabilities ( ID). Understanding the associations between anxiety and CB may contribute to more accurate diagnoses and management of both anxiety and CB in this population. Aims To examine the relationship between anxiety and CB. Methods A literature review covering the period from January 2000 to January 2012. Results Seven studies about the relationship between psychiatric disorders, including anxiety, and CB were identified. These studies confirm the relationship between anxiety and CB in people with ID, although the precise nature of this relationship remains unclear. Conclusions The study points toward the existence of a moderate association between anxiety and CB. Further research is needed to clarify the complex nature of the association between anxiety and CB. [ABSTRACT FROM AUTHOR]

Background Modifying the consistency of food and drink is a strategy commonly used in the management of dysphagia for people with intellectual disabilities ( ID). People with ID often depend on others for the preparation of food and drink and therefore depend on those caregivers achieving the correct consistency to keep them safe and avoid discomfort during mealtimes. Clinical experience and prior research have demonstrated that although training can improve modification, carers often find modification difficult and potentially stressful and recommend additional support for carers. Fluid consistency is often modified through the addition of powdered thickener. This study investigates the efficacy of typical training and use of consistency guides, the Thickness Indicator Model ( TIM) tubes, in helping carers to modify fluids accurately. Method A 3 × 3 pre-post experimental design with a control group was employed to compare the observed accuracy of modification across three groups and at three time points (pre-intervention baseline, immediately post-training intervention and 3-10 months post-training). Sixty-two paid carers who supported people with ID were recruited to participate in the study and each was randomly allocated to one of the three groups: a control group given written guidance only, a group who received typical training and written guidance and a group who received training, written guidance and the TIM tubes. Results & Conclusions Typical training resulted in significantly greater carer accuracy in modifying fluid consistencies when compared with written guidance alone. Use of the TIM tubes also significantly improved accuracy in the modification of drinks compared with the group who modified with the aid of written guidance alone. At 3-10-month follow-up only the group who received typical training alongside the TIM tubes were significantly more accurate than the Written Guidance group. Further research is warranted to ascertain the effectiveness of the training and the utility of the TIM tubes in improving accuracy over a longer time scale and in individuals' usual living environments. [ABSTRACT FROM AUTHOR]

Background In the Netherlands, no self-report screening questionnaire for anxiety in people with intellectual disabilities ( ID) was available yet. Therefore, we have translated the Glasgow Anxiety Scale for people with an Intellectual Disability ( GAS-ID) into Dutch and studied its reliability and validity in adults with borderline, mild or moderate ID. Method Test-retest reliability was studied in 66 participants, convergent validity against the Anxiety sub-scale of the Hospital, Anxiety and Depression Scale ( HADS-A) in 96, and criterion validity against psychiatric diagnosis in 195 participants. Results Internal consistency was α = 0.86 and test-retest reliability ICC = 0.89 (95% CI: 0.82-0.93). Correlation with the HADS-A was r = 0.61 (95% CI: 0.47-0.72); sensitivity was 83.9% (95% CI: 72.2-91.2) and specificity was 51.8% (95% CI: 43.6-59.9) using a cut-off score of 17. Missed diagnoses (false-negatives) were mostly specific phobias. Of the false-positives, 38 of 66 participants (58%) had another psychiatric diagnosis. Conclusions The Dutch version of the GAS-ID is a reliable screening instrument with satisfactory sensitivity, but moderate specificity for anxiety disorders. Although specificity for anxiety disorders is only moderate, high scores appear to be indicative of other psychiatric problems too, justifying referral for psychiatric assessment of false-positives. [ABSTRACT FROM AUTHOR]

Background People with intellectual disabilities (ID) have an increased vulnerability to develop psychiatric problems. Moreover, the early recognition and the accurate diagnosis of psychiatric disorders in the population of persons with ID are challenging. Method A Dutch version of the Mini PAS-ADD, which is a screening instrument for identification of mental health problems in people with ID, was evaluated in terms of internal consistency, interinformant reliability, item grouping and criterion validity based on a large-scale random sample ( n = 377) and a clinical sample ( n = 99) of adults with ID. Results The Dutch version of the Mini PAS-ADD showed moderate internal consistency, and moderate concordance among informants. Both aspects of the reliability were comparable for different levels of ID. A factor analysis largely confirmed the scale structure. Concurrent validity with the Reiss Screen for Maladaptive Behavior was high for the Depression, Psychosis and Autism scale. The outcome of the criterion-validity analysis indicated high specificity. The sensitivity for specific psychiatric disorders by the corresponding scales was moderate, but the general sensitivity for the presence of psychopathology on the basis of any of the scales was satisfying. Conclusions The present research reconfirmed the use of the Mini PAS-ADD as a primary screening device for the identification of mental health problems among people with ID. [ABSTRACT FROM AUTHOR]