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Background People with intellectual disabilities (IDs) may be at increased risk of developing periodontal diseases and dental caries due to poor oral hygiene. Our aim was to investigate motor proficiency factors associated with presence of visible plaque and gingival bleeding in people with IDs. We were particularly interested in the level of dependence, manual coordination and fine manual control of people with ID, as well as the level of exhaustion of the primary caregiver. Methods In this cross-sectional study, 299 people with ID were evaluated for oral hygiene using the simplified Visible Plaque Index and for gum inflammation using the Gingival Bleeding Index. The Bruininks-Oseretsky Motor Proficiency Test assessed motor proficiency through fine manual control (fine motor integration and fine motor precision) and manual coordination (manual dexterity and upper limb coordination). The level of dependence was assessed by the Katz dependency index, and the caregiver was tested for exhaustion using the fatigue severity scale. Prevalence ratios [and 95% confidence intervals (CI)] were calculated using crude and adjusted Poisson regression with robust variance. Results The exhaustion of the caregiver was associated positively to visible plaque [prevalence ratio (PR) = 1.36; 95% CI 1.06-1.65]. For gingival bleeding, people with IDs that had better fine motor integration (PR = 0.49; 95% CI 0.33-0.75) and precision (PR = 0.50; 95% CI 0.26-0.94), as well as manual dexterity (PR = 0.62, 95% CI 0.49-0.77), presented better results. Conclusion Poor oral hygiene and gum inflammation were associated with motor proficiency of people with IDs and caregivers' exhaustion. Interventions to improve the oral health of people with IDs should take into account such conditions.

Background There is evidence that psychotropic medications are overprescribed and overused to manage behaviours of concern for people with intellectual disabilities. Disability support workers and support staff lack education and training on the administration and safety of psychotropic medication use. This study aimed to test the applicability and preliminary efficacy of SPECTROM, an education programme developed in the UK, in an Australian context. Methods The training comprises two parts: Module 1 encompasses psychotropic medications, their use and side effects. Module 2 focuses on non-pharmacological interventions for supporting people with behaviours of concern. Thirty-three participants attended the training course and completed pre-training and post-training surveys on the Psychotropic Knowledge Questionnaire and Management of Aggression and Violence Attitude Scale-Revised at four time points: pre-training, 2 weeks, 3 months and 5 months post-training. Results Psychotropic Knowledge Questionnaire scores showed statistically significant post-training improvement at all post-training time points (P < 0.05). Management of Aggression and Violence Attitude Scale-Revised scores were high at pre-training and did not change significantly at any of the post-training survey time points. A 2-week post-training feedback questionnaire reported 80% agreement that the training programme was appropriate, useful and valid. Only 36% of participants completed questionnaires at all time points. Conclusions SPECTROM training increased staff knowledge of psychotropic medications, yet loss of participants was high. Further refinement of the applicability of the training for the Australian context and evaluation of the feasibility of implementation, clinical and cost-effectiveness of the programme are required.

Background: \ud The promotion of physical activity and the decrease of inactivity and sedentary behaviour are crucial for a healthy lifestyle and positive quality of life. People with intellectual disabilities are at increased risk of inactivity and sedentary behaviour. Therefore, it is important to increase their physical activity by implementing physical activity guidelines in their daily life. Professional direct care providers can play a decisive role in supporting people with intellectual disabilities to participate in physical activity, but the engagement of direct care providers with this role may be reflective of their own attitudes and beliefs towards physical activity. Therefore, the link between the implementation of current physical activity guidelines for people with intellectual disabilities and direct care providers' own beliefs and behaviour with regard to physical activity is investigated.\ud \ud Method: \ud A total of 104 direct care providers completed self‐reported questionnaires about their own physical activity behaviour (IPAQ‐SF), recommendations for people with intellectual disabilities (adaption of EMIQ‐HP) and questions regarding global physical activity guidelines. They were also asked about potential barriers and facilitators for the recommendation of physical activity in open‐ended questions. \ud \ud Results: \ud Personal physical activity behaviour is related to the recommended physical activity for people with intellectual disabilities (moderate‐to‐vigorous physical activity: r s = 0.408, P = 0.005). However, recommended physical activity behaviour for people with intellectual disabilities is significantly lower than direct care providers' own physical activity behaviour (P < 0.001). 47.1% of the respondents recommended people with intellectual disabilities to participate in less than the 150 min of moderate intensity physical activity per week for that is recommended in global physical activity guidelines. \ud \ud Conclusion: \ud Direct care providers may hold stereotypical views and insecurities about the potential harms associated with people with intellectual disabilities participating in physical activity. Therefore, the dissemination of physical activity recommendations for people with intellectual disabilities should be a major target for health professionals, social workers and scientists to address direct care providers' concerns. Furthermore, we need to emphasise the benefits of regular physical activity to professional direct care providers and directly to people with intellectual disabilities.

BACKGROUND: There is no widely used instrument to detect frailty in people with intellectual disabilities (IDs). We aimed to develop and validate a shorter and more practical version of a published frailty index for people with IDs.METHOD: This study was part of the longitudinal 'Healthy Ageing and Intellectual Disability' study. We included 982 people with IDs aged 50 years and over. The previously developed and validated ID-Frailty Index consisting of 51 deficits was used as the basis for the shortened version, the ID-FI Short Form. Content of the ID-FI Short Form was based on statistics and clinical and practical feasibility. We evaluated the precision and validity of the ID-FI Short Form using the internal consistency, the correlation between the ID-FI Short Form and the original ID-Frailty Index, the agreement in dividing participants in the categories non-frail, pre-frail and frail, and the association with survival.RESULTS: Seventeen deficits from the original ID-Frailty Index were selected for inclusion in the ID-FI Short Form. All deficits of the ID-FI Short Form are clinically and practically feasible to assess for caregivers and therapists supporting people with ID. We showed acceptable internal consistency with Cronbach's alpha of 0.75. The Pearson correlation between the ID-Frailty Index and the ID-FI Short Form was excellent (r = 0.94, P < 0.001). We observed a good agreement between the full and short forms in dividing the participants in the frailty categories, with a kappa statistic of 0.63. The ID-FI Short Form was associated with survival; with every 1/100 increase on the ID-FI Short Form, the mortality probability increased by 7% (hazard ratio 1.07, P < 0.001).CONCLUSION: The first validation of the ID-FI Short Form shows it to be a promising, practical tool to assess the frailty status of people with ID.

People with intellectual disability (ID) are a vulnerable group in our society; many of them depend on other people for assistance in their everyday lives. Compared with the general population, people with ID have poorer general health and, therefore, need more healthcare services and use more medicines. The aim of this study is to define the population of all Finnish people with ID using administrative data and to compare their medicine use and expenditure on medicines to those of the age-matched and sex-matched controls.People with ID and their age-matched and sex-matched controls (1:1) were extracted from nationwide healthcare and social allowance registers. Administrative register data on all prescription medicine purchases in 2019 were used to determine the prevalence of medicine use in both groups on a general level and by medicine categories. The differences in the prevalence of medicine use between the two groups were analysed using the logistic regression model. In addition, we studied the total expenditure on reimbursable medicine purchases covered by the National Health Insurance between people with ID and control group.The subpopulation of people with ID consisted 37 196 individuals, of whom 82.7% purchased prescription medicines in 2019. The corresponding share of individuals purchasing prescription medicines in the control group was 70.3%. The differences in the prevalence of medicine use between the two populations were highest in the younger age groups (0-6, 7-12 and 13-17). In the study population, 28.1% (OR = 12.28; 95% CI: 11.54-13.07) of the people used antipsychotics, making it the most used medicine category in people with ID. In the control group, 3.3% of people used antipsychotics. Compared with the control group, the use of antiepileptics, drugs for constipation, mineral supplements and anxiolytics was four to seven times higher among people with ID. Furthermore, the median expenditure on medicine use among people with ID was four times higher than in the control group.Compared with the control group, people with ID used more medicines, especially psychotropics, and their expenditure on medicine use was higher.

Contains fulltext : 225896.pdf (Publisher’s version ) (Open Access) BACKGROUND: Data on the development of Covid-19 among people with intellectual disabilities (IDs) are scarce and it is uncertain to what extent general population data applies to people with ID. To give an indication of possible implications, this study investigated excess mortality patterns during a previous influenza epidemic. METHODS: Using Dutch population and mortality registers, a historical cohort study was designed to compare mortality during the 2017-2018 influenza epidemic with mortality in the same period in the three previous years. People with ID were identified by entitlements to residential ID-care services as retrieved from a national database. RESULTS: Data covered the entire adult Dutch population (12.6 million; GenPop), of which 91 064 individuals were identified with an ID. During the influenza epidemic, mortality among people with ID increased almost three times as much than in the GenPop (15.2% vs. 5.4%), and more among male individuals with ID (+19.5%) than among female individuals with ID (+10.6%), as compared with baseline. In both cohorts, comparable increases in mortality within older age groups and due to respiratory causes were seen. Particularly in the ID-cohort, excess deaths also occurred in younger age groups, due to endocrine diseases and ID-specific causes. CONCLUSIONS: During the 2017-2018 influenza epidemic, excess mortality among people with ID was three times higher than in the general Dutch population, appeared more often at young age and with a broader range of underlying causes. These findings suggest that a pandemic may disproportionally affect people with ID while population data may not immediately raise warnings. Early detection of diverging patterns and faster implementation of tailored strategies therefore require collection of good quality data.

Background A preponderance of behavioural symptoms is assumed to be the main difference in the manifestation of symptoms of post‐traumatic stress disorder (PTSD) in people with intellectual disability (ID). However, no study so far has assessed the relationship between challenging behaviour (CB) and PTSD. The present study aims to explore this relationship by exploring whether CB is directly related to trauma exposure or whether this relationship is mediated through core symptoms of PTSD. Methods Trauma exposure and current symptoms of PTSD were assessed in 43 adults with mild to moderate ID. Parallel versions were administered to 43 caregivers, including the Aberrant Behaviour Checklist to measure CB. Bayesian mediation analyses were conducted using self‐rated and informant‐rated data. Results The self‐report data showed no associations of CB with trauma exposure or PTSD symptoms. The association between informant‐rated trauma exposure and irritability was mediated by severity and frequency of PTSD symptoms. The associations between informant‐reported trauma exposure and the Aberrant Behaviour Checklist subscales hyperactivity and inappropriate speech were mediated by PTSD symptom severity. Conclusions The relationship between trauma exposure and CB was mediated by PTSD symptoms. PTSD core symptoms should be considered as underlying causes of CB, highlighting the necessity to explore trauma biography and symptoms of PTSD. The improvement of self‐report assessment in people with ID is an important task for future studies.

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

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

BackgroundDirect support professionals play an important role in facilitating physical activity support for people with intellectual disabilities (ID). This study examined how the characteristics of people with ID and the characteristics of direct support professionals are related to the professionals' behaviour when supporting people with ID in physical activity.MethodsA cross‐sectional approach was used. Direct support professionals (n = 217) who support people with ID completed a self‐report questionnaire, which aimed to measure the components that produced behaviour when providing physical activity support for people with ID. Associations with the characteristics of people with ID and the characteristics of the professionals were analysed using multivariate linear regression models.ResultsThe results demonstrate that the professionals' characteristics – such as age, workplace and training – were related to the variance in the components that theoretically produced the direct support professionals' behaviour. The characteristics of the people with ID did not contribute to the variance in the direct support professionals' behaviour.ConclusionsThe findings suggest that professional characteristics are the dominant reasons for the differences observed in the capability, opportunity and motivation of direct support professionals to provide physical activity support. This study also underscores the need for integrated training programmes to help direct support professionals promote physical activity in people with ID.

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

BackgroundThe annual health check (AHC) programme, as part of a Directed Enhanced Service, offers an incentive to general practitioners in England to conduct health checks for people with intellectual disabilities (IDs). The aim of this analysis was to estimate the impact on health care costs of AHCs in primary care to the National Health Service in England by comparing adults with ID who did or did not have AHCs using data obtained from The Health Improvement Network.MethodsTwo hundred eight records of people with ID from The Health Improvement Network database were analysed. Baseline health care resource use was captured at the time the first AHC was recorded (i.e. index date), or the earliest date after 1 April 2008 for those without an AHC. We examined the volume of resource use and associated costs that occurred at the time AHCs were performed, as well as before and after the index date. We then estimated the impact of AHCs on health care costs.ResultsThe average cost of AHC was estimated at £142.57 (95%CI £135.41 to £149.74). Primary, community and secondary health care costs increased significantly after the index date in the no AHC group owing to higher increase in resource utilisation. Regression analysis showed that the expected health care cost for those who have an AHC is 56% higher than for those who did not have an AHC. Age and gender were also associated with increase in expected health care cost.ConclusionThe 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 Research has shown Australian group homes, and supported living options, fail to support people with intellectual disabilities (IDs) to develop social connections. This pilot study evaluates the effectiveness of a visiting dog walking program to facilitate encounters with other community members. Method Sixteen adults with IDs were assigned to one of two groups, matched on key characteristics. Group 1 had 14, 1-hour outings in the community with a dog and their handler; Group 2 had 14 outings with a handler alone, followed by an additional five outings with a handler and a dog. Within and between group differences were analysed according to number of encounters when a dog was present and absent. Qualitative data provided insights into the nature of these encounters. Results The number of encounters was significantly higher when a dog was present than when participants went out into the community with a handler alone. This pattern was reflected in the qualitative data, which also suggested the presence of a dog helped to break social norms about speaking to strangers and discourage disrespect towards people with IDs. Conclusions A dog walking program has the potential to encourage convivial encounters, which in the long term could be catalysts to help people with IDs build social connections in their communities; this should be further explored.

Background The World Health Organisation has launched a programme to promote Global Cooperation on Assistive Technology. Its aim is to increase access to high-quality affordable assistive products (AP) for everybody in need. People with intellectual disabilities (ID) are a specific group that could benefit from AP, but use less AP compared to their non-intellectual disabled peers. Method A systematic literature search was carried out to identify barriers and potential facilitators for access to AP for people with ID globally. The search strategy terms were ‘Intellectual Disability’ and ‘Assistive Technology’ with the following electronic literature databases PubMed, Embase, ASSIA, Web of Science, Medline, CINAHL complete, PsycInfo, Scopus and ERIC. The quality and relevance of the studies were assessed. Factors associated with access were identified thematically, categorised into barriers and facilitators and mapped into themes. Results In all, 22 key studies were retrieved, describing 77 barriers and 56 facilitators. The most frequently reported barriers were related to lack of funding and cost of AP, lack of awareness about AP and inadequate assessment. An increase of knowledge and awareness about AP and the need of AP for people with ID were most often extracted as factors that could potentially facilitate access. Conclusions This review proposes actions linked to the barriers and facilitators that have a particular importance for people with ID to access AP. Yet, only limited research is available describing factors that influence access to AP for people with ID in low and middle income countries and rural areas.

Background: To optimise care and support for people with intellectual disabilities (ID), sharing and application of knowledge is a precondition. In healthcare in general, there is a body of knowledge on bridging the ‘know-do-gap’. However, it is not known to what extent the identified barriers and facilitators to knowledge sharing and application also hold for the care and support of people with ID, due to its specific characteristics including long-term care. Therefore, we conducted a systematic review to identify which organisational factors are enabling and/or disabling in stimulating the sharing and application of knowledge in the care and support of people with ID. Method: A systematic review was conducted using five electronic databases of relevant articles published in English between January 2000 and December 2015. During each phase of selection and analysis a minimum of two independent reviewers assessed all articles according to PRISMA guidelines. Results: In total 2,256 articles were retrieved, of which 19 articles met our inclusion criteria. All organisational factors retrieved from these articles were categorised into three main clusters: (1) characteristics of the intervention (factors related to the tools and processes by which the method was implemented); (2) factors related to people (both at an individual and group level); and, (3) factors related to the organisational context (both material factors (office arrangements and ICT system, resources, time and organisation) and immaterial factors (training, staff, size of team)). Conclusion: Overall analyses of the retrieved factors suggest that they are related to each other through the preconditional role of management (i.e., practice leadership) and the key role of professionals (i.e. (in)ability to fulfill new roles).

Background: To optimise care and support for people with intellectual disabilities (ID), sharing and application of knowledge is a precondition. In healthcare in general, there is a body of knowledge on bridging the ‘know-do-gap’. However, it is not known to what extent the identified barriers and facilitators to knowledge sharing and application also hold for the care and support of people with ID, due to its specific characteristics including long-term care. Therefore, we conducted a systematic review to identify which organisational factors are enabling and/or disabling in stimulating the sharing and application of knowledge in the care and support of people with ID. Method: A systematic review was conducted using five electronic databases of relevant articles published in English between January 2000 and December 2015. During each phase of selection and analysis a minimum of two independent reviewers assessed all articles according to PRISMA guidelines. Results: In total 2,256 articles were retrieved, of which 19 articles met our inclusion criteria. All organisational factors retrieved from these articles were categorised into three main clusters: (1) characteristics of the intervention (factors related to the tools and processes by which the method was implemented); (2) factors related to people (both at an individual and group level); and, (3) factors related to the organisational context (both material factors (office arrangements and ICT system, resources, time and organisation) and immaterial factors (training, staff, size of team)). Conclusion: Overall analyses of the retrieved factors suggest that they are related to each other through the preconditional role of management (i.e., practice leadership) and the key role of professionals (i.e. (in)ability to fulfill new roles).

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.

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

Background: 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. Methods: 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. Results: 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. Conclusions: Preliminary results indicate that more severe psychopathology is associated with multiple traumatisation in childhood and adulthood compared with trauma experienced solely in adulthood.

Background: Physical health needs of people with intellectual disabilities are often overlooked. Inadequate physical health skills (assessment, monitoring) of healthcare professionals working in intellectual disabilities is a barrier to equitable care. Recent reports have called for initiatives to improve training through quality improvement programmes. Aim: An integrative review was undertaken to 1) identify physical health training needs of healthcare professionals 2) identify challenges of implementing quality improvement skills training. Methods: Six electronic databases were searched (January 1990-March 2015) and included if they described the physical health assessment/monitoring skills of healthcare professionals and quality improvement programmes designed to impact the physical health of adults with intellectual disabilities. Articles were appraised using the Mixed Methods Appraisal Tool (MMAT). Results: 668 articles were identified, of which 14 were included in the review. Literature was sparse with none reporting training needs of healthcare professionals in intellectual disabilities. Identified training needs of mainstream healthcare professionals included physical assessment, communication, general and syndrome specific knowledge, and health promotion. Quality improvement studies were of limited quality, under evaluated and poorly reported. Lack of staff engagement, role confusion and sustainability were barriers to quality improvement implementation. Conclusion: Physical health skills of healthcare professionals are key to improving care for people with intellectual disabilities. However, quality improvement is poorly implemented in this area of practice. In order to better meet the needs of this group better implementation and evaluation of intellectual disabilities quality improvement programmes is required.

Background Most staff working in intellectual disability services will be confronted with people with intellectual disabilities who need support around death, dying and bereavement. Previous studies suggest that intellectual disability staff tend to protect clients from knowing about death and avoid communication about death. The aims of this study were to gain further insight into the individual, organisational and contextual factors that affect the communication of death-related bad news to people with intellectual disabilities by intellectual disability staff and to develop guidelines for services to enable appropriate communication with clients about death and dying. Method Semi-structured interviews were held with 20 social care staff working in intellectual disability residential or supported living services in London, who had supported a client affected by death-related bad news in the past 6 months. Results Staff found supporting people with intellectual disabilities around death and dying extremely difficult and tended to avoid communication about death. The following factors had a particularly strong influence on staff practice around communicating death-related bad news: fear and distress around death; life and work experience; and organisational culture. Staff attitudes to death communication had a stronger influence than their client's level of cognitive or communicative abilities. Managers were important role models. Conclusions Service managers should ensure not only that all their staff receive training in death, loss and communication but also that staff are enabled to reflect on their practice, through emotional support, supervision and team discussions. Future work should focus on the development and testing of strategies to enable intellectual disability staff to support their clients in the areas of dying, death and bereavement.

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

BackgroundNot much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. MethodsThis qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. ResultsThe core category identified was Patient-related considerations when issuing DNAR orders'. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of The decision-maker role' was as important as that of The decision procedure in an organisational context'. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. ConclusionThe theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making.

Background Equal access to mainstream healthcare services for people with intellectual disabilities (ID) still requires attention. Although recent studies suggest that health professionals hold positive attitudes towards people with ID, stigmatising attitudes may influence their efforts to serve people with ID in community healthcare practice. To stimulate inclusion in mainstream healthcare services, this systematic review focussed on barriers in attitudes of mainstream health professionals towards people with ID. Method Five electronic databases were systematically searched and references in full text articles were checked for studies published in the English language between January 1994 and January 2016. A social–psychological triad of cognitive, affective and behavioural dimensions of stigmatising attitudes is used to structure and discuss the results. Results The literature search generated 2190 records with 30 studies that passed our exclusion criteria. Studies were mostly cross-sectional and of moderate quality. With respect to stigma, a lack of familiarity with and knowledge about people with ID was found. ID was considered as a stable condition not under personal control. Moreover, mainstream health professionals had either low or high expectations of the capabilities of people with ID. Professionals reported stress, lack of confidence, fear and anxiety, a tendency to treat people with ID differently and a lack of supporting autonomy. Conclusions Stigmatising attitudes towards people with ID appeared to be present among mainstream health professionals. This might affect the ongoing challenges regarding inclusion in mainstream healthcare services. To facilitate inclusion in mainstream healthcare services, it is recommended to include contact and collaboration with experts-by-experience in education programs of health professionals. Future research should progress beyond descriptive accounts of stigma towards exploring relationships between cognitive, affective and behavioural dimensions as pointers for intervention. Finally, inclusion would benefit from an understanding of ‘equal’ treatment that means reasonable adjustments instead of undifferentiated treatment.

Background Globally, diabetes is increasing with concerns about the impact on outcomes, including premature death and the costs associated with managing the condition. Research indicates that adults with intellectual disabilities (ID) are two to three times more likely to develop diabetes; however, there has been limited focus on diabetes service utilisation in this population. The aim of this study is to explore the perceptions and experiences of diabetes and ID practitioners. Methods A series of 1:1 semi-structured interviews were undertaken in one Scottish health service area. In total, 29 qualitative interviews were conducted: 10 with diabetes practitioners from primary and secondary care, 14 from ID services and 5 from community care services regarding diabetes service provision for this population. Thematic content analysis was undertaken to identify the themes and subthemes. Results Three main themes were identified: (1) enabling access to services to meet diabetes-related care needs of people with ID; (2) communication and service improvements between staff, patients and across services; and (3) providing person-centred diabetes care and developing adapted resources to increase patient self-care. Conclusions The findings of this study have important international implications in how diabetes practitioners plan and deliver services for people with ID and other vulnerable groups with limited cognitive ability and communication skills and difficulties in self-management. The findings highlight that access to diabetes education and adapted resources is needed, and if ‘reasonable adjustments’ are made to service provision and practice, people with ID can benefit from improved healthcare. Developing joint clinics to share knowledge and resources between diabetes and ID practitioners may improve service delivery and continuity of care, and thereby diminish the costs of not providing quality care.

Background: People with intellectual disabilities (IDs) die at younger ages than the general population, but nationally representative and internationally comparable mortality data about people with ID, quantifying the extent and pattern of the excess, have not previously been reported for England. Method: We used data from the Clinical Practice Research Datalink database for April 2010 to March 2014 (CPRD GOLD September 2015). This source covered several hundred participating general practices comprising roughly 5% of the population of England in the period studied. General practitioner (GP) records identified people diagnosed by their GP as having ID. Linked national death certification data allowed us to derive corresponding mortality data for people with and without ID, overall and by cause. Results: Mortality rates for people with ID were significantly higher than for those without. Their all‐cause standardised mortality ratio was 3.18. Their life expectancy at birth was 19.7 years lower than for people without ID. Circulatory and respiratory diseases and neoplasms were the three most common causes of death for them. Cerebrovascular disease, thrombophlebitis and pulmonary embolism all had standardised mortality ratios greater than 3 in people with ID. This has not been described before. Other potentially avoidable causes included epilepsy (3.9% of deaths), aspiration pneumonitis (3.6%) and colorectal cancer (2.4%). Avoidable mortality analysis showed a higher proportion of deaths from causes classified as amenable to good medical care but a lower proportion from preventable causes compared with people without ID. International comparison to areas for which data have been published in sufficient detail for calculation of directly standardised rates suggest England may have higher death rates for people with ID than areas in Canada and Finland, and lower death rates than Ireland or the State of Massachusetts in the USA. Conclusions: National data about mortality in people with ID provides a basis for public health interventions. Linked data using GP records to identify people with ID could provide comprehensive population‐based monitoring in England, unbiased by the circumstances of illnesses or death; to date information governance constraints have prevented this. However, GPs in England currently identify only around 0.5% of the population as having ID, suggesting that individuals with mild, non‐syndromic ID are largely missed. Notably common causes of death suggest control of cardiovascular risk factors, epilepsy and dysphagia, management of thrombotic risks and colorectal screening are important areas for health promotion initiatives.

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

Background: The aim of this article was to describe how caregivers and relatives shape respect for autonomy in the end-of-life care for people with intellectual disabilities (ID) and to discuss to what extent this corresponds with a relational concept of autonomy, such as described in care ethics. Methods: This study consisted of a qualitative design in which the cases of 12 recently deceased people with ID were reconstructed by interviewing the caregivers and relatives who were closest to the person at the end of their life. A cyclic process of data collection and analysis was used. Interviews were transcribed verbatim and data were analysed inductively. Results: Respect for autonomy in the end-of-life care of people with ID was mainly reflected in helping the person with ID familiarise with three transitions: new information on the diagnosis and prognosis, changing care needs and wishes, and important decisions that were at stake. In respecting autonomy, relatives and caregivers encountered several challenges. These concerned ascertaining information needs, communicating about illness and death, inexperience in end-of-life care, eliciting current and hidden last wishes, the dependence of people with ID and conflicting wishes. Several qualities were important for respecting autonomy: attention to information needs, connecting, recognising end-of-life care needs, giving space to show wishes and preferences, and discussing dilemmas. Conclusions: If caregivers and professionals 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. (aut. ref.)

People with intellectual disabilities (IDs) have been defined as 'socially excluded' and policies of 'social inclusion' invoked to counter this through a focus on paid work and independent living. For many people with IDs this is either not desired or not possible, and as a result many have sought out alternative spaces and activities of inclusion. The paper provides a critique of social exclusion and inclusion, and then goes onto examine (using two case studies) the ways in which people with IDs develop feelings of attachment and belonging within artistic spaces. The paper concludes that not only do these spaces provide mostly positive outcomes for individual people, but also have a potential role in 'reinscribing' the social and cultural understanding of people with IDs.

This publication reports on the systematic review of evidence funded by NHS Education for Scotland.

Background: School leavers with intellectual disabilities 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 intellectual disabilities (ID) and their families as it often results in the loss of friendships, relationships and social networks. Method: The aim of this study was to explore the family carer 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 1 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. Results: 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. Conclusion: 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.

Background: Little is known about the characteristics of people with intellectual disabilities (IDs) who misuse substances and how such problems impinge upon their well-being. The aim of this paper is to describe how alcohol and drugs affect the health of people with IDs. Methods: A questionnaire was forwarded to all the community ID teams and mainstream addiction teams across Northern Ireland: 67 substance users with IDs and substantial substance-related problems were identified. Results: Alcohol was found to be the main substance to be misused, with one-fifth of the substance users also found to be using a combination of illicit drugs and/or prescribed medication. Nearly three-quarters of the sample were found to be hazardously using alcohol for more than 5years. Being male and young, having a borderline/mild ID, living independently and having a mental health problem were found to be risk factors for developing a `substance related problem'. Various problematic behaviours were identified, including aggression, erratic mood changes, sexual exploitation, difficulties in maintaining relationships and loss of daily routine. Conclusions: The findings of this study suggest that greater emphasis needs to be placed upon the early identification of this hidden population by primary and secondary healthcare personnel, and also ID personnel. Such early identification may also diminish the long-established patterns of use and associated related-behaviours that have been reported within this paper.

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

Background: The aim of the current study was to update an existing short measure of sexual knowledge and generate some initial reliability and normative data. Comparisons of sexual knowledge across several groups were made to examine whether or not a lack of sexual knowledge is related to sexual offending.\ud \ud Methods: The Bender Sexual Knowledge Questionnaire (BSKQ) was revised, and a new questionnaire, the General Sexual Knowledge Questionnaire (GSKQ), was created and administered to four groups of participants: (1) sex offenders with an intellectual disability (ID) and a history of engagement in treatment (n=12); (2) sex offenders with an ID and no history of treatment (n=13); (3) non‐offenders with an ID (n=28); and (4) non‐offenders without an ID (n=10). Between‐group comparisons were made; internal consistency, split‐half reliability and correlations were examined.\ud \ud Results: The internal consistency and the split‐half reliability of the entire questionnaire was good. Non‐offenders without an ID scored significantly higher than non‐offenders with an ID on all sections of the GSKQ. Sex offenders who had undergone treatment scored significantly higher than non‐offenders with an ID on several sections of this questionnaire.\ud \ud Conclusions: The initial findings from this study suggest that the psychometric properties of the GSKQ are promising. The assumption that lower sexual knowledge may be related to the risk of committing a sexual offence by people with IDs is possibly erroneous, and further research is required to clarify this possibility.

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

The attitudes of others towards the sexuality of people with intellectual disabilities are one of the main perceived barriers to them expressing their sexuality. Research on what influences these attitudes yields heterogeneous results.A systematic review of the literature and a meta-analysis were carried out.Eleven studies using the Attitudes to Sexuality Questionnaire-Individuals with an Intellectual Disability (ASQ-ID) were included. Within the included studies, the country's socio-economic development and level of individualism were associated with attitudes towards the sexual rights, parenting and self-control of adults with intellectual disabilities. General population and staff samples held more favourable attitudes than family samples in terms of sexual rights and parenting. Age and gender did not yield significant results.Variables related to country context may underlie the differences observed between countries and therefore influence the population's general thinking and ideologies. Unexpectedly, no age differences were observed. Gender-related results may reflect rapprochement between genders in sexuality. These findings are relevant for researchers and practitioners, as they suggest the importance of considering contextual factors when developing effective interventions that aim to support adults with disabilities to live their sexuality.

Background Stressful life events such as bereavement, moving house and changing jobs have repeatedly been implicated as risk factors for mental and physical ill health. Since the 1940s, researchers have demonstrated the negative effects of stressful life events, refined methods of recording such events and investigated the relative impact of different types of event. These investigations have generally not extended to include people with intellectual disabilities. Methods We conducted a narrative review of research on life events as they occur to people with intellectual disabilities and critically assessed the evidence that life events function as a risk factor for psychological problems. Evidence was reviewed for an association between life events and a range of outcome variables, including affective disorders, challenging behaviour, psychosis and psychological problems more generally. We also critiqued the methodology behind the current evidence base and discussed a number of methodological advances that would help to strengthen it. Conclusions There is reasonable evidence that life events are associated with psychological problems, and that there is some tentative evidence that life events play a causal role, although to date, no relationship with psychosis in people with intellectual disabilities has been demonstrated. Life events are likely to be pertinent in clinical work with people with intellectual disabilities.

Background Social restrictions and service closures from COVID‐19 have negatively impacted social inclusion and well‐being for some people with intellectual disabilities (IDs). Methods The fourth wave of a national longitudinal study on ageing in people with ID in Ireland was interrupted during the COVID‐19 outbreak. Social inclusion data for pre‐existing participants interviewed before COVID‐19 (n = 444) were compared with data for pre‐existing participants interviewed during/after lockdown (n = 62). Results More people interviewed after lockdown reported frequent family contact. Significantly greater numbers in the post‐lockdown group reported access to and use of technology than the pre‐lockdown group. Technology use was higher among those living in grouped residences supported by services compared with individuals living independently or with family. Conclusions During the early stages of the COVID‐19 pandemic in Ireland, many older adults with ID stayed connected with family and reported rates of contact higher than were reported by others before COVID‐19. This connection may have been supported by a significant increase in technology use during the pandemic. However, uneven use of technology may disadvantage some including individuals living with family or independently. Given that COVID‐19 restrictions are likely to continue to restrict social opportunities, increased digital support may assist more people with ID to use technology to maintain their social connections.

Background Many people with intellectual disabilities use risperidone long term for the management of challenging behaviours, despite its limited proof of effectiveness and its clear association with adverse events. Therefore, this study aimed to investigate the effectiveness of ongoing treatment with risperidone in reducing challenging behaviours versus controlled discontinuation on behaviour and health parameters. Method This was a placebo-controlled, double-blind, randomised discontinuation trial of risperidone. In the discontinuation group, risperidone was gradually replaced by a placebo over 14 weeks, while the control group maintained their existing dosage. Eight weeks after discontinuation, behaviour (as measured by the 'Aberrant Behavior Checklist') and health parameters (dyskinesia, akathisia, parkinsonism, weight, waist circumference, sedation and laboratory outcomes) were compared in both groups. Results A total of 25 participants were included in the trial, of which 11 were randomised into the discontinuation group and 14 were randomised into the continued treatment group. In the discontinuation group, 82% completely withdrew from risperidone. There was no significant change in irritability, compared with the continuation group, although there was a Group*Time effects on stereotypical behaviour in favour of the continuation group. Significant Group*Time effects were also found for weight, waist, body mass index, prolactin levels and testosterone levels, with beneficial effects for the discontinuation group. Conclusion Discontinuation of long-term risperidone for reducing challenging behaviours is possible, without an increase in irritability. Discontinuation of risperidone may have beneficial effects on weight, waist circumference, prolactin levels and testosterone levels. The study suffered from difficulties in achieving the required sample size, which affected study power and generalizability.

Background People with intellectual disabilities (ID) often do not meet recommended guidelines for physical activity. The aim of this study was to systematically review available evidence that evaluated the effectiveness of interventions to increase physical activity in individuals with ID. Method Five electronic databases (MEDLINE, CINAHL, EMBASE, SPORTDiscus and Cochrane Central Register of Controlled Trials) were searched from inception of the database to July 2017 to identify randomised controlled trials that evaluated the effectiveness of interventions to improve physical activity among people with ID. Trials were included if they measured at least one objective measure of physical activity. Quality appraisal was completed by two independent reviewers using the Cochrane Risk of Bias Tool. The magnitude of treatment effect was estimated for each intervention by calculating the standardised mean difference (SMD) and associated 95% confidence interval. Results Nine randomised controlled trials (976 participants, 501 women, age range 9 months to 83 years) were included. Four trials evaluated unimodal interventions and five trials evaluated multimodal health promotion programmes based on using supportive environments to enable sustained behavioural changes in physical activity. None of the trials were rated as low risk of bias as all had at least one item on the Cochrane Risk of Bias Tool that was considered to be high risk. No trials were able to implement participant blinding. Three trials found statistically significant beneficial effects of interventions for increasing physical activity. Results showed that a 10-week progressive resistance training programme led to maintenance of physical activity levels at 24 weeks in adolescents with Down syndrome (SMD 0.78, 95% CI 0.17 to 1.40). Additionally, a 12- to 16-month multicomponent diet and physical activity programme produced improvement in physical activity at programme completion in adults with ID (reported effect size of 0.29). Finally, an 8-month physical activity and fitness programme increased physical activity at 8 months in adults with ID (SMD 0.91, 95% CI 0.20 to 1.60). Findings regarding other interventions were inconclusive with small effects that were not statistically significant. Conclusions There is inconsistent evidence of the effects of interventions for improving physical activity levels in individuals with ID. A progressive resistance training programme was found to maintain physical activity levels in adolescents with Down syndrome, while a multicomponent diet and physical activity programme and a physical activity and fitness programme were found to improve physical activity levels in adults with ID. Future trials using rigorous research designs are required to confirm these findings and establish whether other interventions designed to increase physical activity in people with ID are effective.

Background: Anxiety disorders have high prevalence in people with intellectual disabilities. In populations without intellectual disabilities, cognitive behavioural therapy is a first line psychological therapy for these presentations. There is no existing review of the range of methods and outcomes from intervention studies in this area. Method: A systematic review was carried out following guidance in the Cochrane handbook for systematic reviews of interventions. Results: Nineteen studies were identified. The majority of reports were descriptive case studies; the most frequently described presentations were non-specific anxiety disorders and post-traumatic stress disorder; the most frequently described cognitive techniques were psycho-education and interventions directly aimed at thoughts and beliefs and most studies reported positive outcomes, although the better controlled studies tended to report less comprehensive impacts. Conclusions: A range of presentations have been described although the area is still at a primarily descriptive stage. We discuss intervention structures and approaches that require further research. © 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd

Background: People with intellectual disabilities face a much greater burden and earlier onset of physical and mental ill‐health than the general adult population. Physical–mental comorbidity has been shown to result in poorer outcomes in the general population, but little is known about this relationship in adults with intellectual disabilities. Aims: To identify whether physical ill‐health is associated with mental ill‐health in adults with intellectual disabilities and whether the extent of physical multi‐morbidity can predict the likelihood of mental ill‐health. To identify any associations between types of physical ill‐health and mental ill‐health. Method: A total of 1023 adults with intellectual disabilities underwent comprehensive health assessments. Binary logistic regressions were undertaken to establish any association between the independent variables: total number of physical health conditions, physical conditions by International Classification of Disease‐10 chapter and specific physical health conditions; and the dependent variables: problem behaviours, mental disorders of any type. All regressions were adjusted for age, gender, level of intellectual disabilities, living arrangements, neighbourhood deprivation and Down syndrome. Results: The extent of physical multi‐morbidity was not associated with mental ill‐health in adults with intellectual disabilities as only 0.8% of the sample had no physical conditions. Endocrine disease increased the risk of problem behaviours [odds ratio (OR): 1.22, 95% confidence interval (CI): 1.02–1.47], respiratory disease reduced the risk of problem behaviours (OR: 0.73, 95% CI: 0.54–0.99) and mental ill‐health of any type (OR: 0.73, 95% CI: 0.58–0.92), and musculoskeletal disease reduced the risk of mental ill‐health of any type (OR: 0.84, 95% CI: 0.73–0.98). Ischaemic heart disease increased the risk of problem behaviours approximately threefold (OR: 3.29, 95% CI: 1.02–10.60). Conclusions: The extent of physical multi‐morbidity in the population with intellectual disabilities is overwhelming, such that associations are not found with mental ill‐health. Mental health interventions and preventative measures are essential for the entire population with intellectual disabilities and should not be focussed on subgroups based on overall health burden.

Background People with intellectual disabilities, if convicted of offences, may be sentenced to prison, but little is known about their life when they are released. Method This study followed up men with intellectual disabilities who were leaving prisons in England. Results The men were hard to contact, but 38 men were interviewed, on average 10 weeks after leaving prison. The men were living in a variety of situations and often were very under-occupied, with limited social networks. A total of 70% were above the clinical cut-off for anxiety, and 59.5% were above the clinical cut-off for depression. The men were receiving little support in the community, and many had been reinterviewed by police. Conclusions Community teams need to provide better support to this very vulnerable group.

Background: In the UK, the closure of ‘long-stay’ hospitals was accompanied by the development of community teams (CTs) to support people with intellectual disabilities (IDs) to live in community settings. The self-reported experiences of staff working in such teams has been neglected. Methods: Focusing on a single county-wide service, comprising five multi-disciplinary and inter-agency CTs, we measured perceptions among the health care and care management team members of (i) their personal well-being (Maslach Burnout Inventory (MBI) Maslach and Jackson, 1981); (ii) the functioning of their team (Team Climate Inventory (TCI) Anderson and West, 1994) and (iii) organisational commitment to quality and culture (the Quality Implementation Improvement Survey – II (QIIS-II, Shortell et al., 1995, 2000). Results: Almost three-quarters of the questionnaires were returned (73/101; 72%). The scores of health care and care managers were very similar: the MBI scores of more than half the respondents were ‘of concern’; (ii) similarly, almost four in ten respondents’ scores on the Vision scale were ‘of concern’; (iii) the perceived commitment to quality (QIIS-II Part 2) was uncertain; and (iv) the organisational culture (QIIS-II, Part 1) was viewed as primarily hierarchical. Discussion: The perceived absence of a vision for the service, combined with a dominant culture viewed by its members as strongly focussed on bureaucracy and process, potentially compromises the ability of these CTs to respond proactively to the needs of people with IDs. Given the challenges that changes in legislation, policy, and practice that have taken place since CTs were established, it would be timely to revisit their role and purpose.

BACKGROUND: Several factors that correlate with the onset or continuation of challenging behaviour are mentioned in research. These are factors related to persons with ID, but also to direct support professionals and the context. Although many of these factors seem to affect the onset or continuation of challenging behaviour in people with ID in general, results are often inconclusive and have little focus on people with profound intellectual and multiple disabilities (PIMD). The present study aimed to assess the extent to which known factors related to challenging behaviour are also applicable to a group of 198 people with PIMD.METHOD: To determine which factors were associated with challenging behaviour, univariate analyses on associations between known risk factors and challenging behaviour were conducted. The associated factors were then subject to a regression analysis to determine the extent to which they explain the prevalence of challenging behaviour and can thus be seen as factors associated with challenging behaviour.RESULTS: The results show that, in particular, factors concerning the personal characteristics of people with PIMD, such as sleeping problems and auditory problems, were related to the variance in mean frequency of challenging behaviour. Only one factor related to the direct support professionals was found: when these professionals had been offered training on the subject of challenging behaviour in people with intellectual disabilities in general, they identified significantly more withdrawn behaviour. We found no contextual factors related to challenging behaviour.CONCLUSION: These findings are generally consistent with findings reported in other studies, especially concerning the personal characteristics of people with PIMD. Further research should focus on the effects of providing safe auditory environments and appropriate sleep schedules for people with PIMD on the occurrence of challenging behaviour.

Background Behavioural interventions are frequently used to address sleep problems in people with intellectual disabilities (ID). The current study aimed to systematically review evidence on the efficacy of behavioural interventions for children and adults with ID and sleep problems. Method Electronic and hand searches identified seven studies for inclusion (N=169). Standardized mean difference effect sizes (d) were calculated for group studies (N=4). Non-overlap effect sizes (Tau-U) were calculated for single case experimental design studies (SCEDs; N=3). Results A large effect size (weighted d = 0.923, CI: 0.705 to 1.151) across group studies indicated large improvements in sleep problems following behavioural intervention. Effect size across SCEDs (weighted Tau-U: 0.528, CI: 0.351 to 0.705) indicated a 53% improvement compared to baseline. Sleep initiation and sleep maintenance problems showed significant improvements post-intervention. Follow-up effects were less consistent across study designs, and suggested that some sleep problems maintain gains better than others. Conclusion Meta-analytic evidence from group and SCEDs can provide complementary information about efficacy. Findings propose that behavioural interventions are a promising evidence-based practice for improving sleep problems in people with ID.