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Background: Our STORM intervention was developed for people (16 +) with intellectual disabilities to enhance their capacity to manage and resist stigma. The current study describes the adaptation of STORM for (synchronous) on-line delivery in the context of the Covid-19 pandemic. Aims: To adapt the manualised face-to-face STORM group intervention for delivery via web-based meeting platforms and to conduct an initial pilot study to consider its acceptability and feasibility. Methods and procedures: The 5-session STORM intervention was carefully adapted for online delivery. In a pilot study with four community groups (N = 22), outcome, health economics and attendance data were collected, and fidelity of delivery assessed. Focus groups with participants, and interviews with facilitators provided data on acceptability and feasibility. Outcomes and results: The intervention was adapted with minimal changes to the content required. In the pilot study, 95% of participants were retained at follow-up, 91% attended at least three of the five sessions. Outcome measure completion and fidelity were excellent, and facilitators reported implementation to be feasible. The intervention was reported to be acceptable by participants. Conclusions and implications: When provided with the necessary resources and support, people with intellectual disabilities participate actively in web-delivered group interventions.

The minimal clinically important difference (MCID) is relevant in the estimation of improvement in a patient outcome.To determine the MCID on the Aberrant Behaviour Checklist-Irritability (ABC-I), widely used to measure the effects of intervention for aggressive challenging behaviour in people with intellectual disabilities.We utilised distribution and anchor based methods to estimate the ABC-I MCID. We extracted data from 15 randomised controlled trials (RCTs) for meta-analysis. We conducted three online workshops with family carers and professionals to consider meaningful change in case vignettes of increasing severity of aggressive challenging behaviour.We did not find overlap in the range of values between the two approaches. The meta-analysis indicated a range of MCID on the ABC-I (0.05, 4.94) whilst the anchor-based estimation indicated a larger change (6.6, 16.6).The MCID is essential in interpreting the results from intervention studies. The present work was undertaken as part of a wider programme on the development and testing of a psychosocial intervention for aggressive challenging behaviour, and it is of interest to researchers in justifying how they choose and determine the MCID on the outcome of interest.

This systemic review investigates the current evidence for the effectiveness of anger and/or aggression interventions for people with intellectual disabilities (ID) in receipt of forensic mental health services. Due to the prevalence within this population of difficulties with anger and aggression, and the associated substantial individual and societal consequences, the provision of psychological interventions has become increasingly common. However, no critical synthesis of the empirical evidence relating to their effectiveness has previously been conducted. Sixteen peer-reviewed controlled trials or case series designs published between 2001 and 2016 met the inclusion criteria. The results highlight an emerging evidence base for the use of CBT in improving anger regulation, and for a range of psychological therapies in reducing aggressive behaviour. However, consistent methodological shortcomings limit the generalisability of findings and currently preclude firm conclusions on effectiveness. Recommendations are made for future research to address these shortcomings, including clearly-defined adaptations, adequately powered sample sizes, carefully designed baselines and follow-up periods. Despite the current status of evidence, the review provides an accessible and objective foundation to inform decision-making by service commissioners and clinicians providing anger and aggression interventions to people with ID.

Background\ud People who identify as lesbian, gay, bisexual and transgender (LGBT) can face many challenges in society including accessing education, care and support appropriate to individual needs. However, there is a growing and evolving evidence base about the specific needs of people with intellectual disabilities (ID) in this regard.\ud \ud Aims\ud The aim of this review was to explore the experiences of people with ID who identified as LGBT through an examination of studies that addressed their views and highlighted specific issues, concerns and service responses.\ud \ud Methods and procedures\ud A comprehensive search of relevant databases from February 1995 to February 2015 was conducted. Studies were identified that met specific criteria that included: empirical peer reviewed studies, the use of recognised research methods and focused on people with ID whom identified as LGBT. The search yielded 161 papers in total. The search was narrowed and 37 papers were screened using rigorous inclusion and exclusion criteria. Finally, 14 papers were considered suitable for the review.\ud \ud Outcomes and results\ud The data were analysed and key themes identified that included accessing health services, gender and sexual identity, attitudes of people with ID regarding their LGBT status, and education, supports and therapeutic interventions.\ud \ud Conclusions and implications\ud There is a need for service providers and carers to be more responsive to the concerns of people with ID who identify as LGBT to improve their health and well-being by reducing stigma and discrimination and by increasing awareness of their care and support needs. The implications are discussed in terms of policy, education, research and practice developments.

Purpose Epilepsy affects 1 in 5 people with an intellectual disability (ID), but little is known about their experiences of living with epilepsy. A qualitative study was conducted to investigate the impact and management of epilepsy in people with ID. Materials and methods People with epilepsy and ID and their carers were invited to take part in semi-structured interviews. Eleven participants with ID and their carers were interviewed together, one participant with ID and their carer were interviewed separately, two interviews took place with the participant with ID only, and one interview took place with the carer only. The interviews were transcribed verbatim, coded, and analyzed thematically (dual independent coding for 30% of the transcripts). Results Three themes emerged (participant characteristics, living with epilepsy, epilepsy management and information needs) which indicated the following: 1) diversity regarding health profiles, communication abilities, severity of epilepsy, perceived control of epilepsy, and support needs; 2) a reduction in severity and frequency of seizures for a sizeable proportion of participants through antiepileptic drugs; 3) the lifelong impact of epilepsy and related seizures on participants' activities and quality of life; 4) the perceived burden of epilepsy and difficulty managing the condition for a large proportion of participants; 5) high levels of satisfaction with epilepsy-related services and care; and 6) an overall lack of written accessible information about epilepsy. Conclusions This study has highlighted a significant impact of epilepsy and related seizures on the daily lives and quality of life of people with ID. Although a sizeable proportion of participants and their carers considered their epilepsy to be well controlled, the majority reported difficulties managing epilepsy and minimizing its impact on their wellbeing. Excluding care staff and the support provided by epilepsy clinics, the participants had not accessed any adapted self-management or information resources about epilepsy., Highlights • People with ID experience a lifelong impact of epilepsy on their quality of life. • The effects of seizures can be difficult to manage for people with ID and carers. • There is a perceived lack of accessible written resources about epilepsy. • High levels of satisfaction with specialist epilepsy clinics were reported.

Background Public support for the rights of persons with intellectual disability (ID) and their acceptance in local communities has been rarely studied internationally and the variables associated with more positive attitudes remain to be confirmed. Aims To develop and test a model that brought together personal, organisational and national predictors related to public attitudes that have been previously identified in past research. Methods and procedures Self-completed, online surveys were undertaken with market research panels in 17 countries and in eight cities in the USA with a total of 36,508 respondents who were representative in terms of gender and age. Path analysis was used to explore the inter-relationships among the predictor, possible mediating and outcomes variables. Outcomes and results The resulting model was a good fit for the data. Support for the rights and community acceptance of people with ID was highest among university educated respondents, those who were comfortable at meeting people with ID and those living in countries with very high ratings on the Inequality Adjusted Human Development Index. Conclusions and implications The model could guide further research into public attitudes alongside the development of interventions to promote more positive attitudes. Further research into the validity of the model is proposed.

Frailty in older people can be seen as the increased likelihood of future negative health outcomes. Lifelong disabilities in people with intellectual disabilities (ID) may not only influence their frailty status but also the consequences. Here, we report the relation between frailty and adverse health outcomes in older people with ID (50 years and over). In a prospective population based study, frailty was measured at baseline with a frailty index in 982 older adults with ID (>= 50 yr). Information on negative health outcomes (falls, fractures, hospitalization, increased medication use, and comorbid conditions) was collected at baseline and after a three-year follow-up period. Odds ratios or regression coefficients for negative health outcomes were estimated with the frailty index, adjusted for gender, age, level of ID, Down syndrome and baseline adverse health condition. The frailty index was related to an increased risk of higher medication use and several comorbid conditions, but not to falls, fractures and hospitalization. Frailty at baseline was related to negative health outcomes three years later in older people with ID, but to a lesser extent than found in the general population. (C) 2014 Elsevier Ltd. All rights reserved.

Despite policies aimed at ensuring equal rights and maximising respect and social inclusion for people with intellectual disabilities, in their daily lives many continue to face negative attitudes and discrimination within society. Misconceptions about what it means to have an intellectual disability and about the capabilities of people with intellectual disabilities appear widespread, and may contribute to prejudice and discrimination. This review provides a summary and evaluation of empirical interventions aimed at increasing knowledge and targeting negative attitudes towards this population among lay people of working age. An electronic search using PsycINFO, Web of Science and PubMed identified 22 English language studies published between 1990 and early 2014 that reported a specific intervention with a lay population sample. The majority of studies reported promising outcomes, particularly those aimed at increasing knowledge of intellectual disability through education. Support for the positive influence of contact with people with intellectual disabilities was demonstrated across several interventions. Interventions delivered at least partly by individuals with intellectual disabilities, and educational interventions appear to hold the most promise. The evidence is limited though by the weaknesses of measurement tools employed.

The present paper provides a review of research on medical students’ attitudes to people with intellectual disabilities. The attitudes of medical students warrant empirical attention because their future work may determine people with intellectual disabilities’ access to healthcare and exposure to health inequalities. An electronic search of Embase, Ovid MEDLINE(R), PsycINFO, Scopus, and Web of Science was completed to identify papers published up to August 2013. Twenty-four studies were identified, most of which evaluated the effects of pedagogical interventions on students’ attitudes. Results suggested that medical students’ attitudes to people with intellectual disabilities were responsive to interventions. However, the evidence is restricted due to research limitations, including poor measurement, self-selection bias, and the absence of control groups when evaluating interventions. Thus, there is a dearth of high-quality research on this topic, and past findings should be interpreted with caution. Future research directions are provided.

The aim of the meta-synthesis was to determine any difficulties experienced by caregivers relating to the sexuality of people with intellectual disabilities and how they address those difficulties. A qualitative meta-synthesis was used to integrate the findings from 17 papers about these topics. The synthesis produced five concepts: 'Fear and Uncertainty', 'Impact of Perceptions of Sexuality', 'The Same and Different', 'Balancing the Roles of Protector and Facilitator' and 'Conditional Sexuality: Conditional Support'. The findings suggest key issues for caregivers in relation to addressing the sexual needs of people with intellectual disabilities and highlight the possible implications of caregivers own views on their practice. These issues are discussed and in conclusion the review offers explanations about what the difficulties for caregivers are and how they might be addressed, as well as recommendations for future research.

Aims: The aim was to examine whether specific skills required for cognitive behavioural\ud therapy (CBT) could be taught using a computerised training paradigm with people who have\ud intellectual disabilities (IDs). Training aimed to improve: a) ability to link pairs of situations\ud and mediating beliefs to emotions, and b) ability to link pairs of situations and emotions to\ud mediating beliefs.\ud \ud Method: Using a single-blind mixed experimental design, sixty-five participants with IDs\ud were randomised to receive either computerised training or an attention-control condition.\ud Cognitive mediation skills were assessed before and after training.\ud \ud Results: Participants who received training were significantly better at selecting appropriate\ud emotions within situation-beliefs pairs, controlling for baseline scores and IQ. Despite\ud significant improvements in the ability of those who received training to correctly select\ud intermediating beliefs for situation-feelings pairings, no between-group differences were\ud observed at post-test.\ud \ud Conclusions: The findings indicated that computerised training led to a significant\ud improvement in some aspects of cognitive mediation for people with IDs, but whether this\ud has a positive effect upon outcome from therapy is yet to be established.

People with intellectual disabilities (IDs) have a higher risk of painful medical conditions. Partly because of the impaired ability to communicate about it, pain is often undertreated. To strengthen pain assessment in this population, we conducted a systematic review to identify behavioral pain indicators in people with IDs by using Embase, PubMed, PsycINFO, CINAHL, and Cochrane. Inclusion criteria were 1) scientific papers; 2) published in the last 20 years, that is, 1992 to 2012; 3) written in English, 4) using human subjects, 5) intellectual disabilities, 6) pain, 7) behavior, and 8) an association between observable behavior and pain experience. From 527 publications, 27 studies were included. Pain was acute in 14 studies, chronic in 2 studies, both acute and chronic in 2 studies, and unspecified in 9 studies. Methodological quality was assessed with the Mixed Methods Appraisal Tool. Of the 14 categories with behavioral pain indicators, motor activity, facial activity, social-emotional indicators, and nonverbal vocal expression were the most frequently reported. Most of the behavioral pain indicators are reported in more than 1 study and form a possible clinical relevant set of indicators for pain in people with IDs. Determination of a behavioral pattern specific for pain, however, remains a challenge for future research. Perspective This review focuses on categories of behavior indicators related to pain in people with IDs. The quality of evidence is critically discussed per category. This set of indicators could potentially help clinicians to recognize pain in this population, especially when unique individual pain responses are also identified. © 2013 by the American Pain Society.

Background People with intellectual disabilities (ID) are usually cared for by their own parents, families or informal caregivers. Caring for a person with ID can have a negative impact on caregivers' mental health (burden, depression, anxiety). The main aim of the EDUCA-IV trial was testing the efficacy of a psychoeducational intervention program (PIP) versus standard practice and to see whether the PIP intervention would reduce the caregiver's burden at post-intervention (4 months) and at follow-up (8 months). Method This was a multi-centre randomised controlled trial including 194 caregivers (96 randomised to PIP, 98 to control condition). PIP intervention consists of 12 weekly group sessions. The control group received treatment as usual. Primary outcomes measured included the Zarit Burden Interview (ZBI). Secondary outcomes were caregivers' mental health (GHQ-28), anxiety (STAI) and depression (CES-D). Results The decrease of ZBI scores was not significant at 4 months. There was significant decrease in the GHQ scores at 4 and 8 months. CES-D showed relevant results at follow-up. Intention to treat analyses showed similar results. Conclusions The PIP intervention seems not to be effective reducing burden, but appears to have a positive result on general mental health. The program was well received and valued by caregivers.

In the present study, the intuitive ability of police to discriminate between real and false statements of people with mild and moderate (IQ range = 50–80, average = 60.0) intellectual disabilities (ID) was analyzed. The assessments issued by groups with different levels of experience in police techniques (psychology students, and police officers) were compared. The results showed no differences between the two groups in their ability to discriminate (d′ = 0.785 and d′ = 0.644, respectively). When the experience of the police was taken into consideration, no differences were found between “experienced” and “novice” police officers (d′ = 0.721 and d′ = 0.582, respectively). No differences were found in response criteria, which were neutral in all cases. Moreover, 34.73% of cases evaluated by the inexperienced group were incorrectly discriminated, in comparison to the 37.75% of incorrect assessments made by police. The implications of the limited ability of intuition to discriminate between real and simulated victims with ID, which did not yield significant differences between experienced and inexperienced assessors in obtaining and assessing statements, are discussed. In light of the results of this study, it is concluded that adequate resources and standardized procedures to properly address people with ID who come into contact with the police and judicial institutions need to be provided.

The management of problem behaviours (PB) in individuals with intellectual disabilities (ID), developmental disabilities (DD) and/or autistic spectrum disorders (ASD) can be challenging. Antipsychotic medications are commonly prescribed where other strategies have failed. A systematic review (SR) was conducted to establish the research evidence for the efficacy of aripiprazole in the management of PB in adults and children with ID, DD and/or ASD. Although included studies supported the efficacy of aripiprazole for this indication, the overall quality of studies was poor. Of the 20 studies included in this systematic review there were only two randomised controlled trials (RCTs) on children with ASD and/or ID/DD, both of which were conducted by the pharmaceutical company that manufactures aripiprazole, and it is not clear whether a number of same participants were included in both RCTs. One of the RCTs was extended into an open label long term follow up, which showed that aripiprazole's efficacy lasted over 52 weeks and the adverse effects were tolerable. Four studies were open label prospective studies, 11 were retrospective case reports which included four single case reports, and two were prospective case series. Most studies reported adverse effects from aripiprazole in the form of weight gain, increased appetite, sedation, tiredness, drooling and tremor. However, aripiprazole improved serum prolactin level in some participants and overall did not show any adverse effect on QTc interval. There is a need for more carefully designed RCTs into the use of aripiprazole in the management of PB in people with ID/DD and/or ASD, which should be carried out independent of pharmaceutical companies.

Although longevity among older adults with intellectual disabilities is increasing, there is limited information on their premature aging related health characteristics and how it may change with increasing age. The present paper provides information of the institutional manager's perception on early onset aging and service preparation for this population. We used purposive sampling to recruit 54 institutional managers who care for people with intellectual disabilities in Taiwan. The present study employed a cross-sectional design using a self-administrative structured questionnaire that was completed by the respondents in November 2009. The results showed that more than 90% of the respondents agreed with earlier onset aging characteristics of people with ID. However, nearly all of the respondents expressed that the government policies were inadequate and the institution is not capable of caring for aging people with ID, and more than half of them did not satisfy to their provisional care for this group of people. With regard to the service priority of government aging policy for people with ID, the respondent expressed that medical care, financial support, daily living care were the main areas in the future policy development for them. The factors of institutional type, expressed adequacy of government's service, respondent's job position, age, and working years in disability service were variables that can significantly predict the positive perceptions toward future governmental aging services for people with ID (adjusted R(2) = 0.563). We suggest that the future study strategy should underpin the aging characteristics of people with intellectual disabilities and its differences with general population to provide the useful information for the institutional caregivers.

Both medication and non-medication based strategies are used in the management of problem behaviours in individuals with intellectual disabilities. Beta-adrenoceptor blocking medications are one group of drugs used for this purpose. However, despite its regular use, the evidence for the efficacy of these drugs for in this context is lacking. A systematic review was conducted to establish the research evidence for the efficacy of beta blockers in problem behaviours in adults and children with intellectual disabilities. Although the research identified supported the efficacy of beta blockers for this indication the overall quality of studies identified was poor and no randomised controlled trials were identified. There is a need for more robust research into the use of beta blockers for people with intellectual disabilities who show problem behaviours.

Individuals with intellectual and developmental disabilities often have difficulties foregoing short-term loss for long-term gain. The Iowa Gambling Task (IGT) has been extensively adopted as a laboratory measure of this ability. In the present study, we undertook the first investigation with people with intellectual disabilities using a two-choice child version of the IGT, with measures of intellectual and executive functioning. Compared to a group of matched controls, people with intellectual disabilities performed advantageously and showed high levels of subjective awareness about the relative goodness and badness of the decks. A symbol labelling intervention, in which participants were taught to label the good and bad decks at regular intervals significantly improved advantageous decision-making to levels approximating that of controls. Factor analysis of executive functioning scores identified working memory and mental flexibility (response initiation and set shifting), with a near-significant inverse correlation between the extent to which the intervention was required and mental flexibility. These findings show, for the first time, that people with intellectual disabilities are capable of performing advantageously on the IGT and add to the growing clinical literature on decision-making.

The purposes of this study were to investigate the potential predictors of personal burnout among staff working with people with intellectual disabilities and to investigate whether personal burnout is associated with health and work-related outcomes. A cross-sectional survey was carried out in 2011 in 30 residential facilities in northern Germany (N = 409, response rate 45%). The German standard version of the Copenhagen Psychosocial Questionnaire was used. In a multiple logistic regression analysis, we identified factors which were predictive of personal burnout, such as work-privacy conflict (OR = 1.04, 95% CI 1.03, 1.05), emotional demands (OR = 1.03, 95% CI 1.01, 1.05), role conflicts (OR = 1.02, 95% CI 1.02, 1.03), job insecurity (OR = 1.03, 95% CI 1.01, 1.05) and feedback (OR = 0.98, 95% CI 0.97, 0.99). These factors explained 49% of the total variance. Higher levels of personal burnout were significantly correlated with higher rates of intention to leave the job and cognitive stress symptoms (p.01). Low values of personal burnout were associated with greater job satisfaction, good general health, and higher satisfaction with life (p.01). The present study indicates that improving the psychosocial work environment at the organizational level may reduce personal burnout and may also diminish unfavorable outcomes, such as intention to leave or job dissatisfaction.

The provision of active treatment for people with intellectual disabilities has been seminal in the literature and in practice for a number of years. Active treatment has programmatic, financial, and legal ramifications for agencies and should be at the center of all appropriate treatment plans. The current work examines the use of psychosocial rehabilitation treatment malls to deliver active treatment to people with intellectual disabilities. The history, development, and implementation of these methods are discussed, with emphasis on services that are functional, meaningful, and portable. The importance of the therapeutic milieu is considered in context and discussed as the primary pathway to increased community integration. Finally, future directions of the treatment malls are considered.

The context for the present study was a cluster-randomized controlled trial of a group-based anger-management intervention, delivered by day-service staff. We aimed to develop a scale to measure the fidelity of manualized cognitive-behavioural therapy (CBT) delivered to adults with intellectual disabilities in group-based settings. A 30-item monitoring instrument (the MAnualized Group Intervention Check: MAGIC) was adapted from an existing fidelity-monitor instrument for individual CBT. Two sessions for 27 groups were observed by pairs of monitors who had no other contact with the intervention. 16 observers participated, in 15 unique pairings. Observers recorded high levels of inter-rater reliability and the scale had good internal consistency. Fidelity ratings predicted two key outcomes of the intervention, and were themselves predicted by the therapists' clinical supervisors.

Low bone mineral density (BMD) and fractures are common in people with intellectual disabilities (ID). Reduced mobility in case of motor impairment and the use of anti-epileptic drugs contribute to the development of low BMD. Quantitative ultrasound (QUS) measurement of the heel bone is a non-invasive and radiation-free method for measuring bone status that can be used outside the hospital. QUS might be used for screening purposes to identify people with intellectual disability with poor bone status, who are in need of supplementary examination and treatment. To investigate feasibility of QUS in this group, QUS of the heel bone was performed on-site in 151 people with ID living in residential care. Measurements were successfully performed in at least one foot in 94.7%, were interpretable (resulting in a stiffness index) in 91.6%, and induced barely or no stress in 90.4% of the study population. Measurements generally took less than 10 min. In 93 persons bone status of both feet had been measured. The "mean percentage of the absolute difference" between outcomes of both feet was 15.5% (+/- 15.3% SD, range 0-76.5%). Ultrasound measurement of the heel bone is a feasible and non-stressful method for measuring bone status in people with ID. Since the mean difference between outcomes of the left and right foot were large, measurement of both feet is recommended to prevent inaccurate interpretation. (C) 2010 Elsevier Ltd. All rights reserved.

Although there is evidence to suggest that people with intellectual disabilities (ID) are likely to suffer from Post-Traumatic Stress Disorder (PTSD), reviews of the evidence base, and the potential consequences of this contention are absent. The purpose of this article is to present a comprehensive account of the literature on prevalence, assessment, and treatment of PTSD in people with ID. Some support was found for the notion that people with ID have a predisposition to the development of PTSD. Differences in comparison with the general population may consist of the expression of symptoms, and the interpretation of distressing experiences, as the manifestation of possible PTSD seems to vary with the level of ID. Since reliable and valid instruments for assessing PTSD in this population are completely lacking, there are no prevalence data on PTSD among people with ID. Nine articles involve treatment of PTSD in people with ID. Interventions reported involve those aimed to establish environmental change, the use of medication and psychological treatments (i.e., cognitive behavioral therapy, EMDR and psychodynamic based treatments). Case reports suggest positive treatment effects for various treatment methods. Development of diagnostic instruments for assessment of PTSD symptomatology in this population is required, as it could facilitate further research on its prevalence and treatment.

We investigated the task processes which hinder people with intellectual disabilities (ID) when using the human-computer interface. This involved testing performance on specific computer tasks and conducting detailed analyses of the task demands imposed on the participants. The interface used by Internet Explorer (IE) was standardized into 16 tasks (161 subtasks). A total of 57 people with ID completed all the tasks. The task demands of each subtask were analyzed and rated by an expert panel review. Results indicated that the 16 identified tasks to have varied levels of difficulty. Participants' performances were differentiated by two tasks: general motor functions and use customized bookmark. The majority of the tasks required visual acuity, vigilance, orientation, and basic sensori-motor abilities. The more difficult tasks were associated with higher levels of working memory and recognition of Chinese words. The model of identification, response, and execution was useful for analyzing the IE tasks. Successful IE performances appeared to be determined by the match between the participants' abilities and the task demands. The findings shed light on the use of task-specific screening tests and on the design of ability-specific training programs that enhance the computer competency of people with ID.

This study aims to analyze the ambulatory visit frequency and medical expenditures of the general elderly population versus the elderly with intellectual disabilities in Taiwan, while examining the effects of age, gender, urbanization and copayment status on ambulatory utilization. A cross-sectional study was conducted to analyze data from 103,183 national health insurance claimants aged 65 or older. A total of 1469 had a principal diagnosis of mental retardation (intellectual disability) and claimed medical outpatient services in 2007. The average number of ambulatory visits was 30.1 ± 23.1, which is much higher than in the United States and other developed countries, and the mean annual visits of the elderly with intellectual disabilities was significantly higher than the general population in Taiwan (35.2 ± 28.7 vs. 30.0 ± 23.1). Age and copayment status affected outpatient visit frequency. The mean medical expenditure per visit and the mean annual outpatient cost were 1146.5 ± 4497.7 NT$ and 34,533.7 ± 115,891.7 NT$, respectively. Male beneficiaries tended to have higher average annual medical expenses and mean medical expenses per visit than female beneficiaries. The three most frequent principal diagnoses at ambulatory visits were circulatory system diseases, musculoskeletal system and connective tissue diseases and digestive system diseases. We conclude that the elderly with intellectual disabilities had higher demand than the general population for healthcare services, and the NHI program lowers the barrier to care for populations with special needs.

Aims\ud \ud Training has been shown to improve the ability of people with intellectual disabilities (IDs) to perform some cognitive behavioural therapy (CBT) tasks. This study used a computerised training paradigm with the aim of improving the ability of people with IDs to: a) discriminate between behaviours, thoughts and feelings, and b) link situations, thoughts and feelings.\ud \ud Methods\ud \ud Fifty-five people with mild-to-moderate IDs were randomly assigned to a training or attention-control condition in a single-blind mixed experimental design. Computerised tasks assessed the participants’ skills in: (a) discriminating between behaviours, thoughts and feelings (separately and pooled together), and (b) cognitive mediation by selecting appropriate emotions as consequences to given thoughts, and appropriate thoughts as mediators of given emotions.\ud \ud Results\ud \ud Training significantly improved ability to discriminate between behaviours, thoughts and feelings pooled together, compared to the attention-control condition, even when controlling for baseline scores and IQ. Large within-group improvements in the ability to identify behaviours and feelings were observed for the training condition, but not the attention-control group. There were no significant between-group differences in ability to identify thoughts, or on cognitive mediation skills.\ud \ud Conclusions\ud \ud A single session of computerised training can improve the ability of people with IDs to understand and practise CBT tasks relating to behaviours and feelings. There is potential for computerised training to be used as a “primer” for CBT with people with IDs to improve engagement and outcomes, but further development on a specific computerised cognitive mediation task is needed.

We used an organizational behavior management (OBM) approach to increase behavior intervention plans and decrease the use of mechanical restraint. First, recipients were tracked as a member of the priority group if they engaged in frequent self-injurious behavior or physical aggression toward others and/or if they had been placed in mechanical restraint as a result of the problem behaviors. Second, a behavior data monitoring and feedback system was put in place. Third, organizational contingencies for the use of mechanical restraint or the occurrence of frequent self-injurious behavior or physical aggression toward others were initiated. Over the course of 17 months, behavior intervention plans were more than doubled to 124 and mechanical restraints decreased by almost 80%. This study represents the first to use an organizational behavior management (OBM) to reduce restraint with people who have intellectual disabilities.

We investigated the long-term effects of an information and communication technology (ICT) training programme for people with intellectual disabilities (ID). A community-based ICT training programme was designed to enhance the computer skills of people with ID and prepare them to make use of ICT in their daily life. Of the 100 who had participated in the original ICT training programme, 59 of them and their caregivers agreed to participate in the follow-up interview. A computer skills checklist was used to assess the ICT competence of the participants before training, after training, and at the 6-month follow-up assessment. All caregivers were interviewed at the 6-month follow-up session to explore the use of ICT by people with ID and their needs for further training. Results from repeated measures ANOVA showed that participants maintained at the 6-month follow-up the basic ICT skills that they acquired during training [F=13.86, p0.001]. Caregivers reported that participants spent more time in using the computers, but still needed occasional guidance. They also reported a need to advance their ICT skills beyond the basic computer training. We concluded that ICT training for people with ID would help them in maximizing the benefits of information technology via computers.

Given the research evidence that people with intellectual disability (ID) do grieve following bereavement, the present study aimed to describe and gather preliminary psychometric data for a version of the Inventory of Complicated Grief [Prigerson, H. G., Maciejewski, P. K., Reynolds, C. F., Bierhals, A. J., Newsom, J. T., Fasiczka, A., et al. (1995). Inventory of Complicated Grief: A scale to measure maladaptive symptoms of loss. Psychiatry Research, 59, 65-79] adapted for use with this population. Carers completed the Complicated Grief Questionnaire for People with ID (CGQ-ID) for 76 individuals with ID, half of whom had experienced a parental bereavement within the last 2 years. The final scale and subscales (Separation Distress and Traumatic Grief) showed very good internal and inter-rater reliability and distinguished between the two groups. While the findings suggest that the CGQ-ID is suitable for identifying complicated grief-type symptoms among adults with ID, further research must be conducted to ascertain whether the findings can be replicated.

Historically residential facilities for individuals with intellectual disabilities have served the role of segregation and congregation with no real focus on integration into the community. More recently the focus has been to get people out of residential institutions and into community-based living settings. This work examines an approach to changing the systems and culture at a large residential facility to create higher rates of transitions to community-based living settings. A multi-phased systematic implementation approach is discussed in which each successive phase builds upon the previous phase. This approach creates opportunities for community integrated activities and then utilizes these community contexts as functional learning opportunities. Results are evaluated in the areas of community presence, community participation, community integration and community inclusion. Data indicate significant increases in each of these areas based on changing the facility focus, simplifying the intrusive accountability systems, aligning resources and teaching staff how to utilize support plans more efficiently to teach skills in functionally appropriate community integrated activities.

Aim: To explore the perceptions of institutional directors on the preventive health strategies for people with intellectual disabilities in institutions. Methods: A structured questionnaire was conducted by a cross-sectional postal survey in all registered institutions in Taiwan in 2002. A total of 157 questionnaires were mailed, of which 121 valid questionnaire were analyzed in this study. Results: The respondents indicated important perception to the preventive health strategies across the 17 criteria, the mean score of importance in preventive health strategies was from 8.4 to 9.7 (score 1–10). But the analysis found that there were many gaps of ‘importance’ compared with ‘satisfactory’ to implementation of preventive health strategies, particularly in the issues of ‘thyroid screening for intellectual disabilities (ID) with Down syndrome’, ‘prevention and treatment of osteoporosis’, and ‘diagnosis and treatment of mental disorders’, these health issues need to be improved in institutions. The present study found that the size and ownership of institutions were not related to the perceptions of importance and satisfaction toward preventive health strategies. Conclusions: The institutions should explore the reasons of why the failure to carry through important health plans into practice to ensure quality of health services for people with ID who living in institutions.

This study reports on the development and assessment of the psychometric properties of three measures to assess sexual knowledge, experience, feelings, and needs. The first was designed to assess the Sexual Knowledge, Experience, Feelings, and Needs of people with mild intellectual disabilities (SexKen-ID). The two parallel measures were designed to assess the same areas of sexuality among people with physical disabilities (SexKen-PD) and among the general population (SexKen-GP). The areas of sexuality included in the scales were Friendship, Dating and Intimacy, Marriage, Body Part Identification, Sex and Sex Education, Menstruation, Sexual Interaction, Contraception, Pregnancy, Abortion and Childbirth, Sexually Transmitted Diseases, Masturbation, and Homosexuality. Generation of the items in these scales is described in Studies 1–3. Study 4 describes the evaluation of the psychometric properties of the scales. Sixty-six people with intellectual disabilities, 54 people with physical disabilities, and 100 people from the general population completed the scales. Test-retest reliabilities were also calculated with 30 people with intellectual disabilities, 30 people with physical disabilities, and 30 people from the general population. These data demonstrate the good psychometric properties of the scales and so their simitability for assessing the sexual knowledge, experience, feelings, and needs of people with disability.

The past 15 years have seen a marked increase in the use of Snoezelen with a wide range of groups including people with intellectual disabilities. Research has been undertaken with respect to a variety of behaviors, notably changes in affect, challenging behavior, relaxation and interactions with both other persons and objects. Typically studies have adopted an applied behavior analysis approach, with a small number employing physiological measures. Research designs vary markedly in their technical adequacy and the participants have a wide range of intellectual disability, age, and additional characteristics such as autism. Much of the literature reviewed demonstrates a wide range of positive outcomes when Snoezelen Vs non-Snoezelen environments are contrasted, though there is little evidence of generalisation even to the immediate post-Snoezelen environment. Several studies, however, do yield entirely negative outcomes. It is difficult to attribute these differing outcomes to either participant characteristics or contrasted designs, given the diversity of approaches to evaluation and the relatively small number of studies. The review also addresses the issue of staff and carer attitudes and the place of Snoezelen in facilitating positive interactions, incidental to any specific sensory effects. Attention is drawn to the need to improve research designs in studying Snoezelen and to developing a clearer theoretical basis for use of this approach.

Forty-nine adults with learning disabilities living in 13 small staffed homes in England were studied as part of larger projects in 1997 and again in 2000. A pre-test/post-test comparison group design was used to assess differences in staff implementation of "active support," service user engagement in meaningful activities and adaptive behaviour. Homes which adopted active support showed significantly increased engagement in meaningful activity and adaptive behaviour between 1997 and 2000. A comparison group showed no significant change.

Background The detrimental effects of caregiving have been well documented. In order to compensate for the disadvantages of caring, research has also tried to identify factors associated to caregivers’ subjective well-being (SWB). Aims We aim at presenting an integrative model of SWB. Methods and procedures Sample consisted of 228 staff working with people with intellectual disabilities. Measures employed included three different components of self-care (social, internal and physical), mental and physical health, conscientiousness, hope, and life satisfaction. The model aimed to explain SWB, measured by life satisfaction, by several variables (self-care, mental and physical health, and conscientiousness), while checking for the role of hope as a partial mediator of these relationships. Outcomes and results Results show an overall good fit of the model: χ2(6) = 12.274, p = .056; CFI = .953; RMSEA = .077 [.000, .139], hence establishing the first model of prediction of SWB of staff in services for people with intellectual disabilities. Conclusions and implications Social self-care, mental health and conscientiousness were capable of explaining life satisfaction but only through hope, that is, these factors did not have significant direct effects. The presence of hope may be then necessary for these factors to benefit staff. Strengths and limitations are discussed.

The prevention of HIV or other STIs in people with intellectual disabilities (ID) is a rarely studied subject even though this population group is at the same risk of infection as the general population.The present study aims to conduct a descriptive analysis of sexual behaviours and condom use frequency in Spanish men and women with intellectual disabilities and identify the combination of variables that best explain condom use in vaginal intercourse.The sample consisted of 253 people (56.1 % male and 43.9 % female) aged between 20 and 64 years (M = 38.52; SD = 10.48). Participants completed the Sexuality Questionnaire for People with Intellectual Disabilities and the Sexual Abuse Risk Screening Scale.The percentage of consistent condom use is 27.7 % for vaginal intercourse. Lack of knowledge about body boundaries constitutes a risk factor contributing to risky sexual behaviour. Knowledge of HIV-transmitting fluids and perceived self-efficacy are protective factors. The proposed model explains between 35.5 % and 46.6 % of the variance.The results highlight the importance of considering the judgements people make about their ability to perform preventive behaviour and the provision of information on sexuality adapted to cognitive abilities to minimise the engagement in risky behaviours.

Summary This study provides the first meta-analysis of the purported differences in sleep time and sleep quality between people with and without intellectual disabilities. Twenty-one papers were identified that compared sleep time and/or sleep quality in people with and without intellectual disabilities. The meta-analysis of sleep time revealed that people with an intellectual disability slept for 18 min less, on average, than people without an intellectual disability. This significant difference was limited to those studies that tested groups of people with an identified genetic syndrome or developmental disorder. The analysis of sleep quality also concluded that people with intellectual disabilities experienced poorer sleep: In 93% of comparisons between groups, sleep was found to be of poorer quality in the group of people with intellectual disabilities. There were no differences found between studies that measured sleep objectively and those that used diary or questionnaire measures. Notably, most samples were drawn from populations of people with specified genetic syndromes or developmental disorders, rather than intellectual disability of heterogeneous origin. Similarly, most studies investigated sleep in children, although there was no evidence that the differences between the groups reduced during adulthood. Most studies used highly-regarded objective measures of sleep, such as polysomnography or actigraphy, although methodological flaws were evident in the identification of samples and the measurement of intellectual disability.

Background. Many people with intellectual disabilities use long-term antipsychotics for challenging behaviour and experience side-effects from these drugs, which may affect Health-related Quality of Life (HQoL).Aims: This study aimed to investigate HQoL in people with intellectual disabilities who use long-term antipsychotics and to investigate its associations with challenging behaviour and physical symptoms often associated with antipsychotics.Materials and methods: We used baseline data of two studies of long-term used antipsychotics. The RAND-36 and the emotional and physical wellbeing subscales of the Personal Outcome Scale (POS) were used to assess HQoL. Associations with challenging behaviour, measured with the Aberrant Behavior Checklist (ABC) and physical symptoms (extrapyramidal, autonomic, metabolic) with HQoL outcomes were analysed by univariate and multivariate linear regression.Results: The mental subscales of the RAND-36 and emotional wellbeing of the POS were associated with the irritability and lethargy ABC-subscales. Physical wellbeing was negatively associated with parkinsonism urinary problems, dysphagia and temperature dysregulation possibly due to antipsychotics use.Conclusion: Both mental and physical wellbeing are related to challenging behaviour and physical symptoms associated with antipsychotics. Therefore HQoL could be a helpful measure when balancing benefits and disadvantages of antipsychotics prescribed for challenging behaviour.

Background Research suggests exposure to adverse life events is elevated in people with intellectual disabilities. We developed the Lancaster and Northgate Trauma Scales (LANTS) to address the limited availability of screening questionnaires for people with intellectual disabilities affected by adverse traumatic experiences. Aims The aims of this study were to (i) evaluate the factor structure of the self-report LANTS and (ii) assess compatibility with the International Classification of Diseases Eleventh Revision (ICD-11) criteria for complex PTSD. Methods and procedure Ninety-eight people with mild to moderate intellectual disability (86 % men; mean age 41 years) completed the self-report LANTS. Exploratory factor analysis was undertaken using a polychoric correlation matrix, appropriate for the LANTS ordinal response options. Outcomes and results Seven items including self-harm and anger were non-normal in distribution and excluded from the analysis; a four-factor structure was identified for the 22 remaining items. We make suggestions for correspondence of LANTS items to ICD-11 criteria for complex PTSD. Conclusions and implications This is the first exploratory factor analysis of the LANTS. Items pertaining to anger and self-harm may be prone to response bias and development of these items using qualitative methods would be useful. The findings require replication with a larger group of people with intellectual disabilities, including more women.

Stigma may have detrimental effects on the rights of individuals with disabilities. This study examined the association between stigma and the perception of rights of people with intellectual disabilities and people with physical disabilities. Telephone interviews using vignette methodology were conducted with a nationally representative sample of 605 adults. Items included stereotypes, prejudice, behavioral reactions and the perception of rights of these individuals. More negative stereotypes, greater social distance and greater withdrawal behaviors were found toward people with intellectual disabilities as compared to people with physical disabilities. Lower support of rights was found toward people with intellectual disabilities as compared to people with physical disabilities. Lower degree of acceptance and higher perception of dangerousness were associated with greater social distance, which was related to lower perception of rights. Programs should aim at decreasing social distance to improve support to exercise rights, especially among people with intellectual disabilities.

People with intellectual disabilities are exposed to a high number of adverse life events, and evidence supports a link between the experience of adverse life events and trauma. Interventions for trauma have been found to be efficacious if case recognition can be facilitated. However to date there are no psychometrically validated measures of trauma for people with intellectual disabilities. This study describes the development of the Lancaster and Northgate Trauma Scales (LANTS), which comprise a self-report and an informant measure of the effects of traumatic life events on people with intellectual disabilities. The pool of items for the measures was created via a systematic review, and consultation with key stakeholders. 99 service users and 88 staff completed the LANTS measures during a pilot. The 29-item self-report LANTS and the 43-item informant LANTS were found to have good psychometric properties, including internal and test retest reliability, plus convergent and construct validity. The findings suggest the LANTS are promising trauma screening tools for use in clinical and research settings.

This paper reports on the development, psychometric properties, and validity of a self-report measure designed to assess potential stressors among staff in services for people with intellectual disabilities, the 33-item Staff Stressor Questionnaire (SSQ). A questionnaire including the SSQ and scales measuring staff outcomes was administered to 512 staff across seven services for people with intellectual disabilities. The SSQ was factor analyzed to produce seven subscales reflecting different potential stressors for staff: user challenging behavior; poor user skills; lack of staff support; lack of resources; low-status job; bureaucracy; and work-home conflict. The SSQ subscales showed adequate internal reliability in terms of Cronbach's alpha and mean inter-item correlations. Associations between SSQ subscale scores and different staff groups, and patterns of associations between SSQ subscales and a range of staff outcomes, provided evidence suggestive of the face-, construct-, and criterion-related validity of the questionnaire. The SSQ shows promise as a measure for assessing potential stressors for staff in services for people with intellectual disabilities. Further studies to examine the reliability, validity, and utility of the SSQ are recommended.

There is a critical need for high-quality population-level data related to the health of individuals with intellectual disabilities. For more than 15 years Special Olympics International has been conducting free Healthy Athletes screenings at local, national and international events. The Healthy Athletes database is the largest known international database specifically on the health of people with intellectual disabilities; however, it is relatively under-utilized by the research community. A consensus meeting with two dozen North American researchers, stakeholders, clinicians and policymakers took place in Toronto, Canada. The purpose of the meeting was to: 1) establish the perceived utility of the database, and 2) to identify and prioritize 3-5 specific priorities related to using the Healthy Athletes database to promote the health of individuals with intellectual disabilities. There was unanimous agreement from the meeting participants that this database represents an immense opportunity both from the data already collected, and data that will be collected in the future. The 3 top priorities for the database were deemed to be: 1) establish the representativeness of data collected on Special Olympics athletes compared to the general population with intellectual disabilities, 2) create a scientific advisory group for Special Olympics International, and 3) use the data to improve Special Olympics programs around the world. The Special Olympics Healthy Athletes database includes data not found in any other source and should be used, in partnership with Special Olympics International, by researchers to significantly increase our knowledge and understanding of the health of individuals with intellectual disabilities.

Background and aims Carers and service users with intellectual disabilities from minority ethnic groups have typically been reported to be dissatisfied with the social care services they receive. However, service users themselves have rarely been asked directly about their experiences of social care. This paper aims to understand the meaning of social care services in the lives of South Asian women with intellectual disabilities, in the United Kingdom. Method and procedure 10 British South Asian women with mild-moderate intellectual disabilities were interviewed about their experiences of social care services. The transcripts were analysed using interpretative phenomenological analysis. Results The analysis produced three super-ordinate themes, which focus on how services facilitate the development of complex identities, how the participants explored their sense of being ‘stuck’ between cultures as they negotiated their journeys towards independence, and the triple disadvantage which they experienced as a consequence of the intersection between gender, ethnicity and disability. The participants were broadly satisfied with the role which services played in these domains, and appeared to find them valuable and helpful. Conclusions The results suggest that the participants successfully managed complex identity issues, such as acculturation processes, with the support of services. It may be helpful to give more explicit consideration to the positive role which good services can play in supporting people with intellectual disabilities in the development of their identities and goals, alongside the more traditionally ‘concrete’ objectives of such social care. Engagement with families in ‘positive risk-taking’ is likely to be an important component of success.

Among the Palestinian minority in Israel, residential placement of people with intellectual disabilities [ID] is relatively new and steadily increasing, but poorly studied. A qualitative design was used to explore the process of residential placement decision by 18 parents of people with ID through semi-structured interviews. Sampling was purposive and data was analyzed thematically. Four main themes emerged representing parents’ perceptions and experiences along the placement decision-making process, together indicating an experience of deeply ‘conflicted parenting’: (a) initial resistance to placement and its perception as abandonment and parental failure; (b) attrition following cumulative difficulties and lack of assistance; (c) resignation and reframing of placement as a necessary evil; (d) relief mixed with guilt, pain, and ambivalence following placement. Residential placement process proved to be linked primarily to lack of resources and of accessible culturally-competent services within the community. Parents’ experience and behavior along the placement decision process reflect relentless efforts to practice “good parenting”. This concept is culturally specific and in the present case entails commitment to consider the individual child’s wellbeing together with the family’s as a whole. Implications for practice are suggested.

Background Many people with intellectual disabilities (ID) living in community-based residences have been found to have unhealthy diet and weight disturbances. In Norway, a majority of people with ID live in such residences. Aims The aim of the study was to examine factors affecting the caregivers’ opportunity to promote a healthy diet among the residents. Methods and procedures A concept mapping methodology was adopted, including group-based brainstorming, idea synthesising, sorting, rating and analysis of the results. Informants were caregivers in four different community residences for people with mild to moderate ID in the southeast of Norway. A total of 13 informants were recruited (12 females and 1 male), and 10 informants completed two sessions. Results Eight clusters were identified as affecting the caregivers’ ability to promote a healthy diet: “Availability and accessibility”, “Guidance and autonomy”, “Competence among staff”, “Planning and involvement”, “Customization”, “External conditions affecting staff”, “Legislation, rules and structure” and “Everyday challenges”, each including both barriers and facilitators. Conclusions and implications Multiple factors affect the caregivers’ ability to promote a healthy diet. Caregivers’ opportunity to promote a healthy diet is complex. Availability and accessibility of healthy food is crucial, but a healthy diet also requires time and competence among the caregivers.

Eidetic model of growth (EMG) is a form of psychotherapy developed for people with intellectual disabilities (ID). EMG is based on the theoretical tenets of eidetic psychotherapy of Akhter Ahsen, which uses eidetic imagery as its major therapeutic tool. The literature review did not find any empirical study on eidetic imagery-based psychotherapy for people with ID except reviews and case histories. This study investigates the clinical utility of therapeutic techniques based on eidetic imagery as developed by Ahsen and Syed. In this study thirty participants with mild and moderate ID were recruited. Participants were recruited from the services for people with ID. These services were contacted to recruit participants who had experiential (i.e., abuse, trauma etc.), emotional (i.e., bereavement, attachment problems), psychiatric (i.e., anxiety, depression) and behavioural (i.e., anger, aggression) problems and to seek consent from the potential participants. The Anxiety Depression and Mood Scale (ADAMS) was administered to the participants before the therapy started, after every 5th session and once the therapy was terminated. The statistical analysis of the pre-therapy and post-therapy scores of participants on the ADAMS was carried out to measure the therapeutic outcome. Paired-sample t-test revealed a significant difference between the pre-therapy and post-therapy scores of participants on ADAMS, with a large effect size (d = 1.54). The result indicates existence of eidetic imagery in people with ID and its promising therapeutic utility., Psychology; Clinical Psychology; Eidetic imagery; Eidetic model of growth; Psychotherapy; Intellectual disability.

The purpose of this study was to investigate the prevalence of and contributing factors to osteopenia and osteoporosis among people with intellectual disabilities (ID) or/and developmental disabilities (DD) residing in a disability institution in Taiwan. The present study was conducted at one disability institution in Taiwan and recruited 184 institutionalized residents with ID and/or DD (115 men and 69 women aged 18-72 years) for analysis. For all residents with ID and/or DD, information was obtained about their age, gender, level of ID, BMI, and bone mineral density (BMD). BMD is a measurement of calcium levels in bones that can estimate the risk of osteoporosis and bone fractures. Bone tests were divided into three outcome categories based on their calcaneal BMD T-scores: Normal BMD, a T-score≧-1; Osteopenia, -2.5≦T-score

Gait is a functionally highly relevant aspect of motor performance. In the general population poorer gait increases the risk of falls and is a predictor for future disability, cognitive impairment, institutionalization and/or mortality. People with intellectual disabilities (ID) show a delayed motor development, which brings to attention the abnormalities that might accompany gait in this population throughout childhood and adulthood. Therefore, this paper aims (a) to provide a focused review of the available literature on gait characteristics in individuals with ID and (b) to gain insight into available instrumentations measuring gait in this population. We searched the database of PubMed for relevant articles and the reference lists of included articles, resulting in 44 included articles. Forty one studies reported gait characteristics during over-ground walking and six studies during perturbed walking conditions. Most studies investigated syndrome-specific ID populations, only five studies investigated the general ID population. The studies show that gait abnormalities are evident during over-ground walking in the ID population, both in people with genetic syndromes and with ID without genetic syndromes. During perturbed conditions people with ID altered their gait with stability-enhancing adaptations. Abnormalities in gait may be partly explained by physical features, but the interrelatedness between gait and cognition may also be an explanation for the gait abnormalities seen in the ID population. Further research regarding gait characteristics of the ID population, and its relation to cognitive functioning, and adverse health outcomes is needed. (C) 2014 Elsevier Ltd. All rights reserved.