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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.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.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.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.

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

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.

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.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.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.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.

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

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.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.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]).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.

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.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.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.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.

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.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.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.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.

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

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

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.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.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.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.

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

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

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

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.

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.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.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.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.

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

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).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.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.We conclude that permanence of mobbing from Time 1 to Time 2 increases depressive symptoms.

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.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.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.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.

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.

People with intellectual disabilities (ID) are at a higher risk of developing diabetes compared with the non-intellectually disabled population, as a consequence of genetic syndromes and because this cohort are more exposed to many of the identified risk factors. However, little is known about the management of diabetes in this population. The aim of this study was to examine the demographics, health and the diabetes quality of care indicators used with people with ID in one region of the UK.This was a quantitative study using a postal survey design. An anonymised questionnaire was posted to all community ID teams and supported living/residential facilities requesting information on the demographics, health and quality of care indicators for people with ID who have diabetes on their caseloads.In total 186 questionnaires were returned. Results showed that 125 people with ID had Type 2 diabetes (67%) and 61 people had Type 1 (33%). Significantly more people with Down syndrome and Autistic Spectrum Disorder had Type 1 diabetes. This study found that 6% had glycossylated glucose levels (HbA1c) greater than 9.5% and for 52% the levels were between 6.5% and 9.4%. Individuals reported to have poor glycaemic control were statistically more likely to have Type 1 diabetes and be younger, live with parents or independently and be obese. Results also illustrate that the national standards for good diabetes management were only partially met.Because of their enhanced predisposition for the development of diabetes this population merits particular attention with regards to screening for the onset of diabetes. The extent to which the quality of diabetes care indicators were achieved was variable but results suggest that for many people the indices were not met, that glycaemic control was poor, that only a quarter were of normal weight, that many were hypertensive and that almost a quarter had no record of their lipid levels. These findings provoke two important questions: first, who should be responsible for promoting diabetes management in this client group and second, how can service provision be tailored to better meet their needs? Greater collaborative working and education is required between ID services, primary healthcare and diabetes clinicians in order to promote the health and meet the quality indicators of diabetes care among this population.

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.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.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.The data support use of the CBS in clinical practice and research to assess carers' beliefs regarding challenging behaviour of people with IDs.

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.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.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).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.

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

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.

Persons with intellectual disabilities (ID) constitute a special-needs population at high risk of falling. This is the first study to evaluate whether obstacle course training can improve mobility and prevent falls in this population.The intervention was implemented as part of an institution-wide health care improvement plan aimed at reducing falls at a residential facility for people with ID. It comprised an annual screening of each resident for his or her individual fall risk. Subsequently, the group of ambulatory persons with a moderate to high fall risk (n = 39) were offered 10-session obstacle course training to improve their balance and gait abilities. Mobility was assessed pre-intervention, mid-term and post-intervention with the Performance Oriented Mobility Assessment (POMA), the Timed Up and Go (TUG) and the 10-meter walking test. The number of falls was compared between the year before and after intervention.The number of falls decreased by 82% (P0.001). POMA scores significantly improved from pre-intervention to mid-term (mean difference ± SD, 1.8 ± 2.9, P = 0.001), from mid-term to post-intervention (2.0 ± 2.9, P0.001), and from pre-intervention to post-intervention (3.8 ± 4.3, P0.001). Participants completed the 10-meter walking test faster at the post-intervention compared with the pre-intervention assessment (difference ± SD, 2.1 ± 5.1 s, P = 0.022). TUG scores did not improve significantly.The present study provides preliminary evidence for the effectiveness of obstacle course training in improving mobility and preventing falls in people with ID. As falls are a significant health concern in this population, further research is advocated to provide conclusive evidence for the suggested beneficial effects of exercise interventions.

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

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

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

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

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

Research suggests that persons with intellectual disabilities (ID) are expected to be more compliant than persons without disabilities and that expectations for compliance begin in childhood. No study, however, seems yet to have included a primary focus on the participatory rights, or rights to express opinions, desires and preferences and to be heard and taken seriously in decision making among young people with ID who are not yet considered legally adult. The purpose of the two current studies was to explore how the right to participation is negotiated for young people with ID in a family context and to determine family members' recommendations for strategies to facilitate the participation of young people with ID.In the first study, four young people with ID, their mothers and two siblings from four families took part in semi-structured interviews about decision making in the family context. In the second study, a mother and daughter from the first study discussed and developed strategies to promote participation for young people with ID.In the first study, all participants communicated that young people with ID follow an age-typical yet restricted pattern of participation in decisions about their lives. Young people's participation was consistently framed by familial norms and values as well as their families' desire to protect them. In the second study, both participants suggested communication about the outcomes of real or imagined decisions would help young family members rehearse decision-making strategies that would facilitate their autonomy while remaining within the bounds of familial norms, values and perceptions of safety.Although young people with ID may make fewer independent decisions about their lives than typically developing peers, support in decision making can enable both increased protection and independence.

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.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.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.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.

School leavers with intellectual disabilities (ID) often face difficulties in making a smooth transition from school to college, employment or more broadly to adult life. The transition phase is traumatic for the young person with ID and their families as it often results in the loss of friendships, relationships and social networks.The aim of this study was to explore the family carers' views and experiences on transition from school to college or to adult life with special reference to ethnicity. Forty-three families (consisting of 16 White British, 24 Pakistani, 2 Bangladeshi and one Black African) were interviewed twice using a semi-structured interview schedule. The carers were interviewed twice, Time 1 (T1) and Time 2 (T2), T2 being a year later to observe any changes during transition.The findings indicate that although transition planning occurred it was relatively later in the young person's school life. Parents were often confused about the process and had limited information about future options for their son or daughter. All family carers regardless of ethnicity, reported lack of information about services and expressed a sense of being excluded. South Asian families experienced more problems related to language, information about services, culture and religion.The majority of families lacked knowledge and awareness of formal services and the transition process. Socio-economic status, high levels of unemployment and caring for a child with a disability accounted for similar family experiences, regardless of ethnic background. The three key areas relevant for ethnicity are interdependence, religion and assumptions by service providers.

Dietary assessment is a challenge in general, and specifically in individuals with intellectual disabilities (ID). This study aimed to evaluate personal digital photography as a method of assessing different aspects of dietary quality in this target group.Eighteen adults with ID were recruited from community residences and activity centres in Stockholm County. Participants were instructed to photograph all foods and beverages consumed during 1 day, while observed. Photographs were coded by two raters. Observations and photographs of meal frequency, intake occasions of four specific food and beverage items, meal quality and dietary diversity were compared. Evaluation of inter-rater reliability and validity of the method was performed by intra-class correlation analysis.With reminders from staff, 85% of all observed eating or drinking occasions were photographed. The inter-rater reliability was excellent for all assessed variables (ICC ≥ 0.88), except for meal quality where ICC was 0.66. The correlations between items assessed in photos and observations were strong to almost perfect with ICC values ranging from 0.71 to 0.92 and all were statistically significant.Personal digital photography appears to be a feasible, reliable and valid method for assessing dietary quality in people with mild to moderate ID, who have daily staff support.

Background There has been no longitudinal study in Taiwan to identify the nature and the scale of medical care utilization of people with intellectual disabilities (IDs) up to the present. The aim of this study is to describe inpatient utilization among people under ID care in institutions in order to identify the pattern of medical care needs and the factors affecting utilization in Taiwan. Method The subject cohort was  individuals with ID who were cared for by a large public disability institution from  to  in Taipei, Taiwan. Results On the examination of the inpatient care that these persons underwent, it was found that these individuals had a heightened need (inpatient rate:  .  ‐  .  %) for inpatient care compared with the general population with disabilities (  .  %) in Taiwan. The main reasons for hospitalization were pneumonia, gastrointestinal disorders, cellulites, orthopaedic problems, epilepsy and bronchitis. Using the full model of Generalized Estimating Equations for inpatient care utilization, the factors including low income family, living in an institution, being a subject with cerebral palsy and being a high outpatient user all influenced the use of inpatient care. Conclusions This study highlights that health authorities need to promote health planning more in order to ensure an excellent quality of health monitoring and health promotion among people with ID cared for by institutions.

The most prevalent type of structural variation in the human genome is represented by copy number variations that can affect transcription levels, sequence, structure and function of genes.In the present study, we used the multiplex ligation-dependent probe amplification (MLPA) technique and quantitative PCR for the detection of copy number variation in 132 intellectually disabled male patients with normal karyotypes and negative fragile-X-testing.Ten of these patients (7.6%) showed copy number variation in the subtelomeric regions, including deletions and duplications.Duplications of the SECTM1 gene, located at 17q25.3, and of the FLJ22115 gene, located at 20p13, could be associated with phenotype alterations. This study highlights the relevance in the aetiology of intellectual disability of subtelomeric rearrangements that can be screened by MLPA and other molecular techniques.

There is a need for validated, standardised tools for the assessment of executive functions in adults with intellectual disabilities (ID). This study examines the validity of a test of planning and problem solving (Tower of London) with adults with ID.Participants completed an adapted version of the Tower of London (ToL) while day-centre staff completed adaptive function (Adaptive Behaviour Scale - Residential and Community: Second Edition, modified version) and dysexecutive function (DEX-Independent Rater) questionnaires for each participant. Correlation analyses of test and questionnaire variables were undertaken.The adapted ToL has a robust structure and shows significant associations with independent living skills, challenging behaviour and behaviours related to dysexecutive function.The adapted ToL is a valid test for use with people with ID. However, there is also a need to develop other ecologically valid tools based on everyday planning tasks undertaken by people with ID.

Attachment research has shown the importance of attachment behaviour for the prevention of dysregulated behaviour due to emotional distress. The support of an attachment figure may be especially important for people with intellectual disability (ID), because they are less adept in dealing with stressful situations on their own. Our purpose was to examine the role of support staff as targets of attachment behaviour for young people with ID by testing the hypothesis that young people who more often engage in attachment interactions with group care staff are less at risk for challenging behaviours. The study design included professional caregivers' report of young persons' attachment behaviour across different relationships to address the relationship-specific nature of attachment behaviour in a group care context.Support staff rated attachment behaviour of 156 young participants with moderate to severe ID who were attending a group care setting. For each participant, we asked two members of the classroom support staff to fill out the Secure Base Safe Haven Observation list. One of them also rated challenging behaviour (Abberant Behavior Checklist).Young people who showed more secure attachment behaviour towards professional caregivers were less irritable, less lethargic and less stereotypic in their behaviour, even if we controlled for developmental age and Autism Spectrum Disorders. Two results point in the direction of relationship-specific attachment behaviour: the absence of high consistency in a person's attachment behaviour towards two different caregivers and the independent contribution of each of these relationships to explaining differences in lethargy and stereotypies. A certain preference in attachment behaviour towards specific caregivers was not associated with challenging behaviour.Findings suggest that attachment behaviour may be part of young persons' adaptation to the stresses and challenges of group care. Furthermore, adaptation may be determined by the integration of relationships with support staff, because each relationship with a care staff member bears uniquely on challenging behaviour.

An assessment of mental capacity includes an evaluation of the ability to 'weigh up' information, but how to do this is uncertain. We have previously used a laboratory decision-making task, temporal discounting, which involves a trade-off between the value and the delay of expected rewards. Participants with intellectual disabilities (ID) showed very little evidence of 'weighing up' of information: only a third of participants showed consistent temporal discounting performance, and when present, consistent performance was usually impulsive; and the ability to perform consistently was more strongly related to executive functioning than to IQ. The aim of the present study was to replicate these observations and extend them to a more realistic financial decision-making task.We administered a temporal discounting task and a financial decision-making task, as well as tests of executive functioning and IQ, to 20 participants who attended day services for people with learning disabilities (mean Full-Scale IQ = 59), and to 10 staff members.Performance in both decision-making tasks was related more strongly to executive functioning than to IQ. In both tasks, decisions by service users were made largely on the basis of a single item of information: there was very little evidence in either task that information from two sources was being 'weighed'.The results suggest that difficulty in 'weighing up' information may be a general problem for people with ID, pointing to a need for psycho-educational remediation strategies to address this issue. The importance of executive functioning in decision-making by people with ID is not recognized in the legal test for mental capacity, which in practice includes a possibly irrelevant IQ criterion.

Background The social climate of inpatient facilities is thought to be an important contributor to treatment outcome. However, little research has focused on this construct within secure forensic services for people with intellectual disabilities (ID). Therefore, the objective of this study was to investigate the social climate of two different types of secure units (‘low’ secure vs. ‘medium’ secure) contained within the same facility for offenders with ID. Two hypotheses were generated: (1) residents would rate the social climate of the whole facility in a more negative direction than staff, and (2) residents and staff would rate the social climate of the ‘low’ secure unit in a more positive direction than that of the ‘medium’ secure unit. Method Using a 2 (factor ‘Participant’ = Staff or Resident) × 2 (factor ‘Unit’ = ‘Low’ or ‘Medium’ Secure Unit) between-subjects design, 18 residents and 37 staff members were recruited and completed the Correctional Institutions Environment Scale (CIES), a measure of social climate. Results Residents tended to rate the units in a more positive direction than staff on some sub-scales. Participants rated the ‘low’ secure unit in a more positive direction than the ‘medium’ secure unit on two sub-scales of the CIES. However, on selected sub-scales there were differences. The findings of this study suggest that the CIES may be a valid instrument for use within forensic services for people with ID, and further suggests that residents and staff have different perceptions of the shared social climate, which may have implications for service development.

Background People with intellectual disabilities (IDs) have a higher level of health needs, a higher level of which is unmet, compared with the general population. Health screening can detect unmet health needs, but it is unknown whether it effects beneficial health outcomes in the longer term. People with IDs are reliant on health management by proxy and there are many potential access barriers that may prevent health needs identified at screening from subsequently being met. This study aims to determine whether health gains can be detected 1 year after a health screening programme specific to the needs of adults with IDs. Methods A total of 50 participants offered the health screen intervention were individually matched for gender, age and level of IDs with 50 control participants who received standard treatment only. Outcome measures after 1 year were semi-structured review of medical case notes, and semi-structured assessment with the people with IDs and their carer. Results During the 1-year period, the incidence of health need detection was more than twice as great for intervention, compared with control participants (mean number of new needs was 4.80 compared with 2.26; P

Background There is a lack of a conceptual framework as to how stress and attribution variables interact and influence staff behaviour in response to challenging behaviour. To address this, a model is tested examining the impact of stress on attributions of challenging behaviour within Weiner's model of helping. Method A total of 107 staff working in community homes for people with intellectual disabilities completed a self-report questionnaire that measured stress, burnout, attributions, emotions, optimism and helping behaviour in response to challenging behaviour. Results Partial support was found for the role of attributions and emotions. However, although staff reported high stress levels and moderate burnout, this did not appear to relate to their reporting of thoughts and feelings regarding challenging behaviour predicted by Weiner's helping model. It was not possible to fully test the helping model, as the ‘help’ variable was not normally distributed. Conclusions There was little evidence to suggest that stress has a primary role in determining staff responses when examined within Weiner's model of helping. Limited support in general was offered for Weiner's helping model. Potential conceptual difficulties and clinical implications are explored and alternative models for future research are discussed.

Background Social stigma and its impact on the life opportunities and emotional well-being of people with intellectual disabilities (IDs) are a subject of both practical and theoretical importance. The disability movement and evolving theories of self, now point to individuals’ ability to develop positive identities and to challenge stigmatizing views and social norms. Method This paper presents findings from a phenomenological study of 10 individuals making the transition from their family home to live more independently and 18 individuals moving from a long-stay hospital to live in community housing. It builds on an earlier data set obtained from people living at home with their families and examines: (1) people's awareness of stigma, and (2) their modes of adaptation to stigma. Results The participants all believed that they faced stigmatized treatment and were aware of the stigma associated with ID. They presented a range of views about self in relation to disability and stigma. These views included regarding themselves as part of a minority group who reject prejudice, and attempts to distance themselves from stigmatizing services and from other individuals with IDs. Conclusions The findings are discussed in relation to theories of self and the importance of considering psychosocial factors is stressed in clinical work with people who have IDs.

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.

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.

Mainstream schooling is a key policy in the promotion of social inclusion of young people with learning disabilities. Yet there is limited evidence about the school experience of young people about to leave mainstream as compared with segregated education, and how it impacts on their relative view of self and future aspirations. Sixty young people with mild to moderate intellectual disabilities in their final year of secondary school participated in this study. Twenty-eight individuals came from mainstream schools and 32 attended segregated school. They completed a series of self-report measures on perceptions of stigma, social comparison to a more disabled and non-disabled peer and the likelihood involved in attaining their future goals. The majority of participants from both groups reported experiencing stigmatized treatment in the local area where they lived. The mainstream group reported significant additional stigma at school. In terms of social comparisons, both groups compared themselves positively with a more disabled peer and with a non-disabled peer. While the mainstream pupils had more ambitious work-related aspirations, both groups felt it equally likely that they would attain their future goals. Although the participants from segregated schools came from significantly more deprived areas and had lower scores on tests of cognitive functioning, neither of these factors appeared to have an impact on their experience of stigma, social comparisons or future aspirations. Irrespective of schooling environment, the young people appeared to be able to cope with the threats to their identities and retained a sense of optimism about their future. Nevertheless, negative treatment reported by the children was a serious source of concern and there is a need for schools to promote the emotional well-being of pupils with intellectual disabilities.

BackgroundGiven the much greater COVID-19 mortality risk experienced by people with intellectual disabilities, understanding the willingness of people with intellectual disabilities to take a COVID-19 vaccine is a major public health issue.MethodIn December 2020-February 2021, across the United Kingdom 621 adults with intellectual disabilities were interviewed remotely and 348 family carers or support workers of adults with intellectual disabilities with greater needs completed an online survey, including a question on willingness to take a COVID-19 vaccine if offered. Results87.0% of interviewees with intellectual disabilities were willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having already had a flu vaccine, gaining information about COVID-19 from television but not from social media, and knowing COVID-19 social restrictions rules. 81.7% of surveyed carers of adults with intellectual disabilities with greater needs reported that the person would be willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having a health condition of concern in the context of COVID-19, having had a flu vaccine, being close to someone who had died due to COVID-19, and having shielded at some point during the pandemic.ConclusionsReported willingness to take the COVID-19 vaccine is high amongst adults with intellectual disabilities in the UK, with factors associated with willingness having clear implications for public health policy and practice.

People with intellectual disabilities are more likely than people in the general population to experience life events associated with an increased risk of mental health problems. However, there has been little research in Japan on the prevalence of mental health problems in adults with intellectual disability (ID) or on associated factors and access to relevant services.Informants completed the Japanese version of the Psychiatric Assessment Schedule for Adults with Developmental Disabilities Checklist, and questions on the use of mental health services, for 126 adults with ID living in Tokyo.A total of 23.8% of adults with ID had scores above the Psychiatric Assessment Schedule for Adults with Developmental Disabilities Checklist threshold score. Mental health problems were associated with age, gender and life events and not associated with the level of ID or living environment. Approximately 60% of participants with mental health problems were treated by psychiatrists and 6% of them received psychotherapy.In the present study, mental health problems occurred in adults with ID at similar frequencies as in previous studies. Adults with ID who experienced mental health problems tended to receive less psychological therapy than the general Japanese population experiencing such problems. This result may indicate poor provision of psychological services for people with intellectual disabilities in Japan.

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.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.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.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.