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Background: The 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. Methods: Two 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. Results: The 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. Conclusion: The level of resource utilisation increased in both (AHC and no AHC) groups after the index date. Although the level of resource use before index date was lower in the no AHC group, it increased after the index date up to almost reaching the level of resource utilisation in the AHC group. Further research is needed to explore if the AHCs are effective in reducing health inequalities. [ABSTRACT FROM AUTHOR]

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

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

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

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

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. [ABSTRACT FROM AUTHOR]

Background: Hospital admissions for preventable reasons [ambulatory care sensitive (ACS) conditions] can indicate gaps in access to or quality of primary care. This paper seeks to document the numbers and causes of these admissions in England for people with intellectual disabilities (ID) compared with those without. Methods: Observational cohort study of number and duration of emergency admitted patient episodes for ACS conditions, overall and by cause, using the Clinical Practice Research Datalink GOLD primary care database and the linked Hospital Episode Statistics Admitted Patient Care dataset. Results: The study covered 5.2% of the population of England from April 2010 to March 2014 giving a total population base of 59 280 person‐years for people with ID and 11 103 910 for people without identified ID. The rate of emergency admissions for ACS conditions for people with ID was 77.5 per 1000 person‐years. As a crude comparison, this was 3.0 times the rate for those without ID, but standardising for the distinct demography of this group, the number of episodes was 4.8 times that expected if they had the same age‐specific and sex‐specific rates. Stay durations for these episodes were longer for both young‐age and working‐age people with ID. Overall people with ID used 399.8 bed‐days per 1000 person‐years. As a crude comparison, this is 2.8 times the figure for people without ID. Standardising for their age and sex profile, it is 5.4 times the number expected if they had the same age‐specific and sex‐specific rates. For patients with ID, 16.6% (one in six) of all admitted patient episodes and 24.3% (one in four) of in‐patient care days for people with ID were for ACS conditions. Corresponding figures for those without ID were 8.3% (one in 12) and 14.4% (one in seven). The difference in rates between those with and without ID was most marked in people of working age. The three most common causes of emergency episodes for ACS conditions in people with ID were convulsions and epilepsy, influenza pneumonia and aspiration pneumonitis. Influenza pneumonia was also a common cause for people without ID. Episodes for convulsions and epilepsy and aspiration pneumonitis were specifically associated with people with ID. Conclusions: Rates of hospital admissions for ACS conditions provide an important indicator of health literacy, basic self‐care (or support by carers) and the accessibility of primary care. High rates are seen for some conditions specifically associated with premature death in people with ID. Local monitoring of these figures could be used to indicate the effectiveness of local primary health services in providing support to people with ID. [ABSTRACT FROM AUTHOR]

Background School leavers with intellectual disabilities (ID) often face difficulties in making a smooth transition from school to college, employment or more broadly to adult life. The transition phase is traumatic for the young person with ID and their families as it often results in the loss of friendships, relationships and social networks. Method The aim of this study was to explore the family carers' views and experiences on transition from school to college or to adult life with special reference to ethnicity. Forty-three families (consisting of 16 White British, 24 Pakistani, 2 Bangladeshi and one Black African) were interviewed twice using a semi-structured interview schedule. The carers were interviewed twice, Time 1 (T1) and Time 2 (T2), T2 being a year later to observe any changes during transition. 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. Conclusions 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. [ABSTRACT FROM AUTHOR]

Background Previous studies have found high rates of intellectual disabilities (ID) in prison. However, little is understood about prisoners with ID. This study aimed to identify prisoners with ID and compare their characteristics with prisoners without neurodevelopmental disorders with regard to demographic profile, mental health, suicide risk and offences. Method This was a descriptive, cross-sectional study carried out using face-to-face interviews with 240 participants in a London Category C prison. Standardised tools were used to assess prisoners for ID and mental disorder. Results The study identified 18 prisoners as having ID. Participants with ID were less likely to be from a black or minority ethnic background, be over 35 years of age or have any qualifications. They were more likely to have been single, homeless or unemployed before coming into prison. Prisoners with ID were significantly more likely to have mental health problems and 25% had thought about suicide in the last month and 63% had attempted suicide in the past. Prisoners with ID were also more likely to be housed in the vulnerable prisoners' wing and significantly more likely to have committed robbery than other prisoners. Conclusions The findings confirm the presence of significant numbers of people with ID with high levels of mental illness in a male prison. Services across the CJS are required for this group, specifically, there is a need for raised awareness among those working in prison about ID and improved skills to recognise offenders with ID and address major gaps in current healthcare provision in prison. [ABSTRACT FROM AUTHOR]

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

Abstract: Background: Little is known about the role of living circumstances to the perception of subjective well‐being (SWB) and health of adults with intellectual disability (ID). The aim of the present study was to examine whether living circumstances impact differently on the perception of health and SWB and whether potential differences persist after accounting for other variables (e.g. level of support needs and reporting method). Methods: Secondary data analysis was undertaken of a large national survey of adults with an ID in England, aged 16 years and over. Participants were identified as living with family (N = 1528) or living out of home (N = 874). Results: The results of t‐test and chi‐square revealed that levels of health and SWB were perceived as being higher for people living with family than those living in out‐of‐home settings. Multiple linear regression analyses fitted to explore factors associated with these reported differences revealed that, when controlling for other variables, living with family was highly associated with reports of better SWB. Multiple logistic regression revealed that whilst the health status of people living with families were perceived as better, this was only true when their support needs were low. Poorest health outcomes were found for people with highest support needs who lived with family. Conclusions: On the whole, the health and well‐being of adults living with family were perceived more positively than those living out of home. However, potential health disparities exist for those with high support needs who live with family. Further longitudinal research is needed to explore causes and potential solution to these inequalities. [ABSTRACT FROM AUTHOR]

Background People with intellectual disabilities (ID) are at risk that their health problems, many of which cause pain, go unrecognised and untreated. Their understanding and personal experiences of pain have received little research attention. Method Information was collected from 15 adults with ID using semi-structured interviews about their experiences and understanding of pain. Transcripts were analysed using content analysis. Results Participants described pain using negative meanings and strong imagery, with various causes of pain suggested, but said little about how they coped with pain. Participants varied in whether they reported pains to carers, some choosing to hide the experience. There seemed a general belief that others can tell when someone is in pain. Conclusions Conversations regarding pain with adults with ID are a real challenge; health-care staff need to think carefully about the questions they ask. Possessing verbal skills cannot be taken as an indication that pain will be communicated. [ABSTRACT FROM AUTHOR]

Background Hospital closure programmes in England have generally sought to attain a fulfilling life for people with an intellectual disability by locating them in domestic-style housing in urban settings. Few have been placed in intentional or ‘village’ communities. Yet comparative studies of different housing types have found that intentional communities have better or similar outcomes for their residents than dispersed housing or residential clusters on former hospital sites. A possible explanation is the distinctive pattern of social relationships that exist in many intentional communities and the impact this has on the lives of their residents. This paper reports the results of research that explores the perceptions of people with an ID living in an intentional community and the meaning of their community to them. Methods The research used an ethnographic approach to interview a sample of 15 residents in a large intentional community (Botton Village), which is part of the Camphill Movement. Interviews used Makaton, pictures and symbols where required. Results Respondents included 10 men and 5 women aged between 38 and 78 years. Length of residence in Botton Village ranged from 5 to 50 years. All lived with the families of co-workers and valued these relationships. All but one (who had retired) worked in a diverse range of employment in the village. Almost all were positive about their work. Respondents reported that they took part in both individual and communal leisure activities and all but two had a network of friends. Opportunities for friendship were enhanced by proximity to other people with an ID and a sense of personal security in the village. As in many villages and communities in society in general, these advantages were balanced by some loss of privacy. Conclusions Results confirm those from earlier studies of intentional communities and suggest that positive outcomes derive from the absence of the overt subordination of residents to staff, the facilitation of friendship with other people with an ID, high levels of meaningful employment and a sense of community. These factors contrast with the experience of living in small homes funded on a contractual basis by public authorities, in which cost pressures reduce wage levels for staff resulting in difficulties in retaining suitable staff and a consequent high staff turnover. [ABSTRACT FROM AUTHOR]

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

Background Aggression is a significant problem amongst people with intellectual disabilities (ID), particularly those residing in hospital settings. Anger is related to aggression in secure services working people with ID, and the effectiveness of psychological interventions in reducing anger has been demonstrated in this population. However, no studies have systematically examined whether levels of aggression reduce following anger treatment with people with ID detained in secure settings. Method This programme evaluation study concerns individually delivered cognitive anger treatment delivered to 50 patients (44 men and 6 women) with mild to borderline ID, delivered twice weekly for 18 sessions in a specialist forensic hospital service. Aggressive incidents and physical assault data were obtained from records 12 months pre-treatment and 12 months post-treatment. Results Following completion of treatment, the total number of aggressive incidents recorded in patients' files fell by 34.5%, and the post-treatment reduction in the number of physical assaults was 55.9%. Analysis of the data partitioned into 6-month blocks over the 24-month study period showed that significant reductions in aggressive and violent incidents occurred in the assessment intervals following anger treatment. Conclusions These findings reinforce the efficacy of cognitive behavioural anger treatment for detained patients with ID and histories of aggression; and despite its methodical limitations the study indicates the ecological validity of this treatment approach. [ABSTRACT FROM AUTHOR]

Background There is some evidence that people with intellectual disabilities (IDs) living in the community are exposed to the same risks of alcohol use as the rest of the population. The aims of this project were to investigate the prevalence of alcohol use disorders in patients with ID known to a psychiatric community specialist team, and to explore appropriate screening tools and any relationship between alcohol use disorders and mental health co-morbidities. Method A random sample of 40 patients was recruited and interviewed using CAGE and Alcohol Use Disorders Identification Test (AUDIT) to assess alcohol use. Information on physical and mental health was also collected. Results One in five patients was positive on CAGE (20%) and AUDIT (22.5%). Significantly more of those had a history of mental illness compared with those who were negative. Thirty per cent of the total sample had been diagnosed with at least one health condition, which clinical notes failed to report. In addition two out of three of those positive on CAGE or AUDIT were smokers. Conclusions The study suggests that alcohol use disorders seem to be a hidden problem within the ID population, existing alongside multiple physical and mental health needs. [ABSTRACT FROM AUTHOR]

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

Background Research has demonstrated a relationship between the experience of life events and psychopathology in people with intellectual disabilities ( ID), however few studies have established causal links and to date no prospective studies have utilised a measure of trauma that has been developed specifically for this population group. Method This 6-month prospective study examined longitudinal relationships between adverse life events and trauma in 99 adults with mild to moderate ID. Results Life events during the previous 6 months were significantly predictive of levels of trauma as measured by the self-report Lancaster and Northgate trauma scales ( LANTS), and the informant LANTS behavioural changes, frequency and severity sub-scales. This prospective causal relationship was demonstrated while controlling for any prior life events or pre-existing trauma, though the relationship was not moderated by social support. Conclusions Evidence of a causal relationship between adverse life events and trauma symptoms is important for treatment planning and funding allocation. [ABSTRACT FROM AUTHOR]

The present paper describes age-related fractures in 68 people with intellectual disability and epilepsy (39 females and 29 males). A higher incidence of fractures in epileptic subjects (269%) was noted when they were compared with non-epileptic patients (15%). In the sample of 263 epileptics (121 females and 142 males), a higher number of females (32%) sustained fractures than their male counterparts (20%). The peak period of all fractures is between 40 and 49 years of age. The highest incidence of fractures in females occurred during the periods from 10 to 19 and 40 to 49 years, while the peak was between 30 and 39 years for males. The causes of fractures and preventative measures are discussed, and further avenues for research are indicated. [ABSTRACT FROM AUTHOR]

Two hundred and five people with intellectual disability, aged 18 years or over, and living in health- or social-services-managed community housing, completed sleep and behaviour questionnaires. An 85.7% return rate was achieved. Settling problems were present in 26.8% and night waking in 55.6% of the subjects. Parasomnias were present in 14% of subjects and 15% of the sample showed some features associated with sleep-related breathing problems. Factors associated with sleep-related problems included gender, aetiology of intellectual disability, epilepsy, treatment with antiepileptic medication, evening caffeine consumption, nocturnal urinary incontinence and ability to communicate. Significant sleep-related problems were demonstrated in this population; some of these problems might be avoided by simple measures. [ABSTRACT FROM AUTHOR]

This study is a follow-up to an original survey carried out in the early 1980s of all children with an identified intellectual disability in Cornwall, England. The purpose of this second study was to review the use of antipsychotic medication in these children and to relate it to their various diagnoses. This is a relatively under-researched area, and the few comparable studies in children have not been designed to specify diagnoses, psychiatric or otherwise. A positive relationship between the diagnosis of autistic spectrum disorders in children and the use of antipsychotic medication was one of the important findings which emerged from the research. The possible reasons for this association are discussed. [ABSTRACT FROM AUTHOR]

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

Background Research into specific illnesses and the development of new treatments may only become possible as new technologies become available. When used for research, such technologies may best be described as 'intrusive', in that they require a considerable willingness and commitment on the part of the participants. This has increasingly been the case for brain disorders and illnesses where novel neuroimaging techniques, often combined with clinical and psychological assessments, have the potential to result in new understanding. People with intellectual disabilities (ID) have a history of under-representation as participants in research using such technologies and are therefore at risk of not receiving equal access to state-of-the-art treatments. We propose that 'intrusive' biomedical research is both possible and ethical in ID, and explore some of the methodological challenges by reference to a recent proof of principle study that used a relatively new ligand-based brain scanning technique in a group of volunteers with Down's syndrome. Methods Five overlapping stages of the study methodology were identified and evaluated for their acceptability to volunteers with mild to moderate ID through discussion, reflection, and analysis of structured feedback in the context of key policy documents, ethical guidelines and relevant legislation. Results Identification of key ethical and methodological challenges from reflective practice and participant feedback facilitated the emergence of strategies that permitted continual refinement of the study design. Important areas considered included (1) being clear about the purpose and scientific justification for the study; (2) reconciling the potential risks and benefits with relevant ethical guidelines and legislation; (3) identifying and implementing effective recruitment strategies; (4) optimising and assessing capacity to consent; and (5) making the 'intrusive' procedures as acceptable as possible to people with ID. Conclusion We were able to demonstrate that a proof of principle study incorporating a novel brain scanning technique in a group of volunteers with ID was feasible, safe and well tolerated, despite the vulnerabilities of the study cohort and the intrusive nature of the research. We consider the study within an ethical and historical discourse about the principles that define current 'best practice' in ID research and propose a number of key recommendations for making intrusive research acceptable in people with ID. [ABSTRACT FROM AUTHOR]

Article 29 of the Convention on the Rights of Persons with Disabilities guarantees equality of political rights, including the right to vote and stand for election. The affirmation of these rights, first guaranteed by the Universal Declaration of Human Rights, raises an important question given the long-standing association between political rights and beliefs concerning the abilities of citizens to reason and act independently: how and to what degree can people identified as having intellectual disabilities participate in a defining act of the democratic process? Focused specifically on the right to vote, this paper addresses the question by (1) introducing the debates that have surrounded the voting rights of this population; and (2) reporting on recent attempts in Kenya, and in England and Wales, to promote voting by people with intellectual disabilities. It concludes by considering the effectiveness of the different approaches these countries have adopted. [ABSTRACT FROM AUTHOR]

Background In meeting the needs of individuals with intellectual disabilities (ID) who access health services, a brief, holistic assessment of need is useful. This study outlines the development and testing of the Learning Disabilities Needs Assessment Tool (LDNAT), a tool intended for this purpose. Method An existing mental health (MH) tool was extended by a multidisciplinary group of ID practitioners. Additional scales were drafted to capture needs across six ID treatment domains that the group identified. LDNAT ratings were analysed for the following: item redundancy, relevance, construct validity and internal consistency ( n = 1692); test-retest reliability ( n = 27); and concurrent validity ( n = 160). Results All LDNAT scales were deemed clinically relevant with little redundancy apparent. Principal component analysis indicated three components (developmental needs, challenging behaviour, MH and well-being). Internal consistency was good (Cronbach alpha 0.80). Individual item test-retest reliability was substantial-near perfect for 20 scales and slight-fair for three scales. Overall reliability was near perfect (intra-class correlation = 0.91). There were significant associations with five of six condition-specific measures, i.e. the Waisman Activities of Daily Living Scale (general ability/disability), Threshold Assessment Grid (risk), Behaviour Problems Inventory for Individuals with Intellectual Disabilities-Short Form (challenging behaviour) Social Communication Questionnaire (autism) and a bespoke physical health questionnaire. Additionally, the statistically significant correlations between these tools and the LDNAT components made sense clinically. There were no statistically significant correlations with the Psychiatric Assessment Schedules for Adults with Developmental Disabilities (a measure of MH symptoms in people with ID). Conclusions The LDNAT had clinically utility when rating the needs of people with ID prior to condition-specific assessment(s). Analyses of internal and external validity were promising. Further evaluation of its sensitivity to changes in needs is now required. [ABSTRACT FROM AUTHOR]

Background Adults with intellectual disabilities ( ID) experience a wide range of eating, drinking and/or swallowing ( EDS) problems, for which they receive diverse mealtime support interventions. Previous research has estimated that dysphagia (difficulty swallowing) affects 8% of all adults with ID and that 15% require some form of mealtime support. People with ID (whether they require mealtime support or not) also experience a greater burden of ill health and die younger than their peers in the general population with no ID. Methods Using an exploratory, population-based cohort study design, we set out to examine health-related outcomes in adults with ID who receive mealtime support for any eating, drinking or swallowing problem, by establishing the annual incidence of healthcare use, EDS-related ill health, and all-cause mortality. This study was conducted in two counties in the East of England. Results In 2009, 142 adults with mild to profound ID and a need for any type of mealtime support were recruited for a baseline survey. At follow-up 1 year later, 127 individuals were alive, eight had died and seven could not be contacted. Almost all participants had one or more consultations with a general practitioner ( GP) each year (85-95%) and, in the first year, 20% reportedly had one or more emergency hospitalizations. Although their annual number of GP visits was broadly comparable with that of the general population, one-fifth of this population's primary healthcare use was directly attributable to EDS-related ill health. Respiratory infections were the most common cause of morbidity, and the immediate cause of all eight deaths, while concerns about nutrition and dehydration were surprisingly minor. Our participants had a high annual incidence of death (5%) and, with a standardized mortality ratio of 267, their observed mortality was more than twice that expected in the general population of adults with ID (not selected because of mealtime support for EDS problems). Conclusions All Annual Health Checks now offered to adults with ID should include questions about respiratory infections and EDS functioning, in order to focus attention on EDS problems in this population. This has the potential to reduce life-threatening illness. [ABSTRACT FROM AUTHOR]

Background The objectives were (a) to compare the general empathy abilities of men with intellectual disabilities (IDs) who had a history of sexual offending to men with IDs who had no known history of illegal behaviour; and (b) to determine whether men with IDs who had a history of sexual offending had different levels of specific victim empathy towards their own victim, in comparison with an unknown victim of sexual crime, and a victim of non-sexual crime, and make comparisons with non-offenders. Methods Men with mild IDs (n = 35) were asked to complete a measure of general empathy and a measure of specific victim empathy. All participants completed the victim empathy measure in relation to a hypothetical victim of a sexual offence, and a non-sexual crime, while additionally, men with a history of sexual offending were asked to complete this measure in relation to their own most recent victim. Results Men with a history of sexual offending had significantly lower general empathy, and specific victim empathy towards an unknown sexual offence victim, than men with no known history of illegal behaviour. Men with a history of sexual offending had significantly lower victim empathy for their own victim than for an unknown sexual offence victim. Victim empathy towards an unknown victim of a non-sexual crime did not differ significantly between the two groups. Conclusions The findings suggest that it is important include interventions within treatment programmes that attempt to improve empathy and perspective-taking. [ABSTRACT FROM AUTHOR]

Background The current study investigated how ideas and models from the 'New Genetics' and associated fields of developmental neuroscience and behavioural phenotypes are perceived by clinical psychologists working with people with intellectual and developmental disabilities (IDD). As well as examining the take-up and influence of such ideas, it also examines barriers, both personal and institutional, to the widespread adoption of such concepts and research findings in services for people with IDD. Methods A Q-methodology study was undertaken with 31 qualified and 16 trainee clinical psychologists in the North West of England using a specifically developed 81-item Q set. Results Three factors were identified and labelled Integration of social and medical models, Social model of disability is more helpful and Genetic advances in conflict with recognising the value of people with IDD. Conclusion There was a lack of consensus in clinical psychologists working with people with IDD, with amount and type of professional experience affecting the factor loadings, which may need to be considered in developing clinical applications of genetic IDD research. [ABSTRACT FROM AUTHOR]

Abstracts are presented for papers to be presented at the 2015 conference of the Society for the Study of Behavioural Phenotypes (SSBP) on topics including genetic aspects of intellectual disabilities, the drug n-acetylcysteine as an autism treatment, and executive function in children.

Background Historically, many women with intellectual disability ( ID) did not have children. However, a few decades ago it became more common for women with ID to give birth. Our aim was to compare the completed pregnancies of mothers with ID with other completed pregnancies in a large, defined population. Methods We used the archived dataset of the Oxford record linkage study from 1970 to 1989, which included a specialized dataset of all maternities in a population of 850 000 people. Results There were 245 007 births, of which 217 were to mothers with a record of ID. Mothers with a record of ID were more likely than others to give birth at a young age, were much more likely to be unmarried (42% compared with 9%) and to have smoked in the pregnancy (54% compared with 23%). Comparing babies born of mothers with ID and others, percentages with very low birth weight (<2000 g) were similar at 1.9 and 1.8%. There was no excess of babies who were low birth weight for gestational age. Babies born of mothers with ID were much less likely than others to be breastfed (respectively, 33 and 70%). There were no significant associations with presentation at delivery, Caesarean section or forceps delivery. The distribution of Apgar scores at 1 min after birth was similar in babies of mothers with ID and other babies. The sex ratio of the babies was normal. Combining stillbirths and infant deaths, rates per 1000 were 27.9 for babies of mothers with ID and 13.4 in other babies (borderline significant at P = 0.07). Conclusions Comparing pregnancies and outcomes of mothers with and without ID, there are some important differences, and some important similarities. It is possible, however, that there may be differences over time and between different places in the care and outcomes of pregnancies in mothers with ID. In the modern era, with electronic health records, it should be possible for maternity services, both locally and on a whole population basis, routinely to monitor the pregnancies, and their outcomes, of mothers with ID. [ABSTRACT FROM AUTHOR]

Background This paper examines knowledge exchange dynamics in a specialist integrated intellectual (learning) disability service, comprising specialist healthcare provision with social care commissioning and management, and considers their significance in terms of integrated service delivery. Methods A qualitative study focusing on knowledge exchange and integrated services. Semi-structured interviews ( n = 25) were conducted with members of an integrated intellectual disability service in England regarding their perceptions of knowledge exchange within the service and the way in which knowledge exchange impinges on the operation of the integrated service. Results Exchange of 'explicit' (codifiable) knowledge between health and care management components of the service is problematic because of a lack of integrated clinical governance and related factors such as IT and care record systems and office arrangements. Team meetings and workplace interactions allowed for informal exchange of explicit and 'tacit' (non-codifiable) knowledge, but presented challenges in terms of knowledge exchange completeness and sustainability. Conclusions Knowledge exchange processes play an important role in the functioning of integrated services incorporating health and care management components. Managers need to ensure that knowledge exchange processes facilitate both explicit and tacit knowledge exchange and do not rely excessively on informal, ' ad hoc' interactions. Research on integrated services should take account of micro-scale knowledge exchange dynamics and relationships between social dynamics and physical factors. [ABSTRACT FROM AUTHOR]

Background The impact of staff and service user gender on responses of staff in intellectual disability (ID) services is poorly understood. The present study set out to assess the role of gender in influencing staff emotions, attributions and behavioural intentions in response to aggression displayed by adults with ID. Method A new scale measuring staff behavioural intentions was developed. A two × two (staff gender × service user gender) between subjects design was used to compare the responses of day and residential support staff to physical aggression by a hypothetical service user. In response to a vignette depicting a service user with ID assaulting a member of staff, 160 respondents completed measures of affective responses, causal attributions and behavioural intentions while imagining themselves as the target of the service user's assault. Results Female participants reported feeling more fear/anxiety, more depression/anger and less confident/relaxed than male participants. The longer staff had worked with people with ID, the more likely they were to favour safety-focused behaviours. More confident female participants were less likely to favour safety-focused behaviours, but confidence had no effect on male participants' endorsement of these behaviours. Increased confidence in both was associated with lower agreement of safety-focused behaviours in relation to the female vignette, regardless of participant gender. The more control women believed the service user had over their behaviour, the more likely they were to choose safety-focused behaviours. Punitive behaviours were favoured more in response to the male rather than the female service user. Punitive behaviours were also favoured more by more junior staff and by participants who expected feeling more depressed/angry in response to the vignettes. Conclusions Both staff and service user gender influenced staff responses to aggression, yet the latter played a smaller role than expected. The role of gender in staff-service user interactions should be the focus of further research and should be considered in service delivery. [ABSTRACT FROM AUTHOR]

Background Patients with intellectual disabilities (ID) receive health care by proxy. It is family members and/or paid support staff who must recognise health problems, communicate with clinicians, and report the benefits, if any, of a particular treatment. At the same time international and national statutes protect and promote the right of people with disabilities to access the highest attainable standards of health on the basis of free and informed consent. Methods To consider the role of parent-proxies in the management of epilepsy in adult children with ID who are at risk of lacking capacity to make decisions about their health care we interviewed 21 mothers. Findings These mothers are not pursuing changes in treatment that might improve their son or daughter's epilepsy, nor are they willing to countenance changes in treatment. Clinicians concerned to build and sustain therapeutic alliances with these mothers, our evidence suggests, may well avoid going against their wishes. Discussion Our research highlights the interactional contingencies of a hitherto neglected three-way clinical relationship comprising parent-proxy, an adult at risk of lacking decision-making capacity, and a treating clinician. This is a relationship, our findings suggest, where little importance is attached to either patient consent, or involvement in treatment decisions. [ABSTRACT FROM AUTHOR]

Background Staff can encourage adults with intellectual disabilities to reflect on their experiences in a number of ways. Not all are equally successful interactionally. Methods Conversation Analysis is used to examine c. 30 h of recordings made at two service-provider agencies. Results I identify two practices for soliciting reflection: both start with open-ended 'test' questions, but they differ on how these are followed up. A more interrogatory practice is to follow up with alternatives and yes/no questions. A more facilitative practice is to give hints and elaborate the replies. Conclusions I discuss the differences between the two practices in terms of the institutional agendas that guide the staff's interactional routines. With regard to the more successful one, I note the sensitivity of using 'hints' when asking about clients' own experiences. [ABSTRACT FROM AUTHOR]

Background Clinicians working with clients who have mild intellectual disabilities (IDs) have shown growing enthusiasm for using a cognitive behavioural approach, amid increasing evidence of good treatment outcomes for this client group. However, very little is known about the views and experiences of clients with IDs who have undergone cognitive behavioural therapy. This study aims to explore the perspective of these clients. Methods Fifteen participants with borderline to mild IDs and problems of anxiety, depression and anger were interviewed regarding their experience of cognitive behavioural therapy (CBT). Two semi-structured interviews were carried out in the first phase of therapy between session four and session nine. An interpretive phenomenological approach was taken to seek out themes from participants' own personal accounts. Results Participants valued the opportunity to talk about problems with their therapist and benefitted from therapeutic relationships characterised by warmth, empathy and validation. Participants identified areas of positive change; however, many thought that this may be short lived or not maintained beyond discharge. Conclusions The supportive aspects of therapeutic relationships were particularly important to participants undergoing CBT. The clinical implications are considered. [ABSTRACT FROM AUTHOR]

Background Previous studies in adults with intellectual disabilities (ID) have reported a higher prevalence of obesity than in the general population, and a trend to an increase in the prevalence of excess weight. However, little information is available on body weight status and lipids levels of adults with ID and co-existing mental illness. The aim of this study was to address this information gap, by conducting a stepwise multiple regression analysis to predict BMI, thereby allowing the investigation of (semi-)partial correlations, which assess the extent to which a particular predictor variable is associated with BMI over and above the other predictors. Methods A study of the patients with ID and psychiatric illness registered in the service. Collected data included body mass index (BMI), age, gender, the presence of additional physical conditions, residential status, mental illness and use the psychotropic medication. We analysed the lipid profile including serum cholesterol together with low-density lipoprotein, high-density lipoprotein (HDL), triglycerides and the serum cholesterol/HDL ratio. Data for these variables were entered into a stepwise multiple linear regression to predict BMI. Results 28% of the participants were overweight and 41% obese. Most of the obese patients were men with mild ID ( P = 0.039). Level of ID ( P = 0.003), gender ( P = 0.001) and serum triglycerides ( P = 0.026) had significant predictive value in the regression model. There were no significant differences in either the mean serum cholesterol levels or the mean triglyceride levels between those taking and those not taking first-generation antipsychotics, second-generation antipsychotics or anti-epileptic medication. Conclusions The rate of obesity in our sample was higher than in previous studies. The most predictive combination of predictors to predict BMI was ID level, gender and serum triglyceride levels. Serum triglyceride and cholesterol levels did not appear to be unduly affected by first- or second-generation antipsychotic medication or by antiepileptic medication. [ABSTRACT FROM AUTHOR]

Background When support staff use questions to instruct, advise or guide adults with intellectual disabilities (ID), or to solicit information from them, the interaction does not always proceed smoothly, particularly when replies are ambiguous, absent or not obviously relevant. That can lead to interactional trouble and dissatisfaction, or worse. Methods We report on the ways in which staff members transform their questions over a series of conversational turns in order to solicit an adequate reply, and thereby to fulfil the interactional goal of the question. Our data come from approximately 30 h of recordings of natural conversation between staff members and adults with ID in two residential and one outdoor activities settings. Results We identify seven practices by which staff attempt to resolve the dilemma between undue direction and premature closure. These include: expansion of the original question, simplifying its format, changing its content in various ways and realising its alternatives in physical form. Conclusions We highlight strategies which produce answers satisfactory to both parties, and improve the quality of interaction between staff and people with ID. [ABSTRACT FROM AUTHOR]

Background This was a quantitative study to measure the prevalence low self-esteem in an intellectually disabled forensic population. The dependent variables used were the adapted six-item Rosenberg Self-Esteem Scale and the adapted Evaluative Beliefs Scale. It had a repeated measures design with independent variables including consideration of differences between the low and medium secure parts of the service, the influences of types of offences and the effects of disrupted childhood attachments. Methods Forty-four male clients, with mild to borderline intellectual disabilities, were recruited. Data were collected by one key researcher during individual research interviews using the two structured instruments to measure self-esteem. Further data were then obtained from routinely recorded clinical information held on the hospital computer system. Results Unexpectedly, the majority of clients scored as having moderate or high self-esteem on both self-esteem measures. There was a statistically significant positive correlation between the two scales. In all, 64% of the population studied had committed either sexual offences or fire setting offences. Contrary to expectation, those who had evidence of disrupted attachments had slightly higher self-esteem than those who had not experienced disrupted attachments. Conclusions Self-esteem is a complex personal concept with many influencing factors. Cognitive behaviour therapy has a unique role in realising and overcoming negative core beliefs and feelings of low self-worth. The offence types concurred with previously noted patterns of offending within the intellectually disabled forensic population. [ABSTRACT FROM AUTHOR]

Background The use of out-of-area placements to meet the needs of individuals with intellectual disabilities and challenging behaviour has been increasing in the UK. Such placements claim a large proportion of service budget expenditure; therefore, it is important to consider whether they offer the best-quality care. This paper reports on current evidence relating to such placements and uses a scoping review across five London boroughs to illustrate key issues on provider characteristics and aspects of good practice. Methods We conducted a literature review to identify papers that describe out-of-area placements and carried out a postal survey of 54 service providers that delivered services to service users from five London boroughs. Results Individuals with intellectual disability and challenging behaviour are more likely to be placed out-of-area in services of variable quality and a minority may underperform. Our empirical data suggest that the private sector that is the main accommodation provider is most likely to underperform on meeting standards of care. Conclusion Overall, the majority of out-of-area providers appear to supply a good standard of care but there are many factors that continue to hinder the local treatment of individuals who present with challenging behaviour. There is an imperative to identify poorly performing providers as well as exploring ways in which service users, out-of-area, can be supported effectively. [ABSTRACT FROM AUTHOR]

Background A small amount of research with individuals who have Williams Syndrome (WS) suggests that children with the condition may be vulnerable to sensory processing abnormalities and present with repetitive and restricted behaviours. Methods Parents of 21 children with WS aged 6-15 years completed a semi-structured interview designed to elicit the form, frequency, impact and developmental course of a range of sensory processing abnormalities and repetitive behaviours. Results Findings indicate that sensory processing difficulties are predominantly characterised by hypersensitivities, particularly in relation to vestibular, auditory, gustatory and proprioceptive functioning. Parents also reported the presence of a range of restricted and repetitive behaviours, which were often associated with their child's sensory symptoms. Conclusions This study makes a significant contribution to our understanding of sensory functioning and repetitive behaviours in WS. It also highlights the need for a multidisciplinary assessment of the difficulties experienced by children with the disorder. [ABSTRACT FROM AUTHOR]

Background Individuals with severe to profound and multiple intellectual disability (S-PMID) tend to function at the earlier stages of communication development. Variable and highly individual means of communicating may present challenges to the adults providing support in everyday life. The current study aimed to examine the communication interface between students with S-PMID and educational staff. Method An in-depth, observational study of dyadic interaction in a class within the secondary part of a special school was conducted. The designated educational level was Key Stage 3 under the National Curriculum of England, which is typically for children from age 11 to 14 years attending a state school. There were four student-teacher dyads in the class. The students had multiple impairments with severely limited communication skills. Video capture of dyadic interaction was conducted during five English lessons and sampled to 2.5 min per dyad per lesson. The video footage was transcribed into standard orthography, detailing the vocal and non-vocal aspects. A coding framework guided by the principles of structural-functional linguistics was used to determine the nature of dyadic interaction, comprising linguistic moves, functions and communicative modalities. The relative contributions of student and teacher to the interaction were examined. Results Significant differences were found between the students and educational staff on the majority of the measures. The teachers dominated the interaction, occupying significantly more turns than the students. Teacher turns contained significantly more initiations and follow-up moves than the students, who used more response moves. Teacher communication mainly served the functions of requesting and information giving. Feedback and scripted functions were also significantly greater among teacher turns, with only limited occurrence among the students. Self- or shared-expression was greatest among the students. The modalities of speech, touch, singing and objects were used by the teachers for the purpose of communication, whereas vocalisation and gesture were used by the students. Conclusions Despite differences in the availability of communication skills, both student and teacher were able to make their respective contributions to the interaction during classroom activity. Features of the student-teacher interface retained critical features seen in studies of more able individuals with intellectual disability. Scaffolding provided by teachers appears to be relevant to the communicative contributions of individuals functioning at the earliest stages of communication. The coding framework based on structural-functional linguistics provides some new potential for examining and enhancing the communication interface between individuals with S-PMID and the people who support them. [ABSTRACT FROM AUTHOR]

Background The Behavior Problems Inventory-01 (BPI-01) is an informant-based behaviour rating instrument for intellectual disabilities (ID) with 49 items and three sub-scales: Self-injurious Behavior, Stereoty ped Behavior and Aggre ssive/Des truc tive Behavior. The Behavior Problems Inventory-Short Form (BPI-S) is a BPI-01 spin-off with 30 items. Methods The psychometric properties of these two versions of the scale were computed using aggregated archival data from nine different sites in the USA, Wales, England, the Netherlands and Romania with a total of 1122 cases with a BPI-01 total score >0. Results The internal consistency of the BPI-01 and the BPI-S ranged from fair to excellent with the BPI-01 showing slightly stronger reliability. Construct validity (confirmatory and discriminant) was computed by comparing BPI sub-scale scores with the scores of four other behaviour rating scales (the Aberrant Behavior Checklist, the Diagnostic Assessment for the Severely Handicapped-II, the Nisonger Child Behavior Rating Form and the Inventory for Client and Agency Planning). Strong evidence for confirmatory and discriminant validity was found for both the BPI-01 and the BPI-S. Confirmatory fit indices for the BPI and the BPI-S were comparable and suggesting that the factor structures fit the data well. Conclusion In summary, both BPI versions were found to be equally sound psychometrically and can be endorsed for future use. However, independent future studies are needed to replicate the psychometrics of the BPI-S with new data. [ABSTRACT FROM AUTHOR]

Abstracts are presented for papers to be presented at the 2015 conference of the Society for the Study of Behavioural Phenotypes (SSBP) on topics including the use of mouse models in autism research, the development of dementia in people with Down syndrome, and epigenetic aspects of developmental disorders.

A study was made of the quality of life of 29 older people with intellectual disability who left hospital to live in ordinary three- or four-bedroom houses. A short version of the Questionnaire on Quality of Life was used to measure quality of life before moving and at three points in the first 53 months after changing residence. Results showed that there were improvements in quality-of-life subscales in the first 41 months with an eventual levelling out after 53 months. Social and leisure activity have been identified as particular important in the quality of life of older people. Therefore, items from the scale that measure participation in community leisure activities, contact with people without intellectual disability during these activities and engagement in leisure activities within the home were selected for detailed analysis. These data also showed increased activity and contacts in the first 41 months with a levelling out after 53 months. [ABSTRACT FROM AUTHOR]

Background Efforts to uphold and promote the human rights of people with intellectual disabilities ( ID) are being affected by the increasing emphasis on 'choice' in the delivery of social care services. While rights presume subjects or selves to whom they apply, there is a disconnect between the subjects presumed within human rights frameworks and the variable capacities of a heterogeneous ID population. This disconnect is amplified by choice discourses which characterise current service provision based upon neoliberal ideologies. Method Conceptual assumptions and theoretical positions associated with human rights in relation to people with ID are critically examined. Results The analysis results in an argument that current conceptualisations of personhood in relation to human rights exclude people with ID. The adverse effects of this exclusion are exacerbated within services which emphasise the permissive rights associated with a neoliberal agenda of 'choice' over protective rights. Conclusions In order to ensure that the human rights of people with ID are upheld, neoliberal emphases on choice need to be tempered and a more nuanced and inclusive notion of personhood in relation to universal human rights needs to be adopted. [ABSTRACT FROM AUTHOR]

Background Applied behaviour analysis (ABA) reduces challenging behaviour in people with intellectual disability. There is interest, however, in whether such interventions reduce carer burden and increase community participation in this group. Methods A 6-month randomised controlled trial was followed by a longer-term naturalistic follow-up of participants. We studied the impact of the challenging behaviour on the carers and on the daily activities of the participants measured by the Carer Uplift and Burden Scale and Guernsey Community Participation and Leisure Assessment respectively. Results Both community participation and carer burden improved at 6 and 24 months. Burden showed significant reduction in family carers compared with paid carers. There was no significant intervention effect on the variables under consideration. Conclusions ABA appears to be no more effective than standard care in improving social outcomes in people with intellectual disabilities and challenging behaviour but this requires further examination in a larger trial. [ABSTRACT FROM AUTHOR]

Presents letters to the editor in the prevalence of intellectual disabilities among South Asian and White adults in Leicestershire, England. Determinants of inequalities in prevalence and need associated with ethnicity, culture and poverty; Methods of case ascertainment and identification of intellectual disability; Inclusion of the administrative definitions of intellectual disability.

Background In England and Wales, the Mental Capacity Act 2005 ( MCA) provides a new legal framework to regulate substitute decision-making relating to the welfare of adults who lack the capacity to make one or more autonomous decisions about their care and support. Any substitute decision made on behalf of an adult lacking capacity must be in his/her ‘best interests’. However, the value of adopting established principles and procedures for substitute decision-making in practice is uncertain, and little is known about the legal or ethical dynamics of social care support, including the day-to-day residential support provided to adults with intellectual disabilities (ID). Methods This paper reports a qualitative, grounded theory analysis of 21 interviews with support workers working in residential care homes for adults with ID, and observations of care practices. Results In contrast to the narrow legal responsibilities placed upon them, it is argued that support workers interpret substitute decision-making within a broad moral account of their care role, orientating their support towards helping residents to live ‘a life like ours’. In so doing, support workers describe how they draw on their own values and life experiences to shape the substitute decisions that they make on behalf of residents. Conclusions Support workers' accounts reveal clear discrepancies between the legal regulation of substitute decision-making and the ways that these support workers make sense of their work. Such discrepancies have implications both for the implementation of the MCA, and for the role of support workers' values in the conceptualisation and delivery of ‘good’ care. [ABSTRACT FROM AUTHOR]

Background Aggressive challenging behaviour is common in adults with intellectual disability (ID) in long-term care facilities. The government's commitment to the closure of all facilities in England has led to concerns over how to manage this behaviour in the community. The aim of this study was to assess changes in aggressive challenging behaviour and psychotropic drug use in adults with ID following resettlement using a person-centred approach. Method The Modified Overt Aggression Scale was administered to carers of 49 adults with ID prior to discharge from a long-stay hospital and 6 months and 1 year after community resettlement. Results All areas of aggressive challenging behaviour reduced significantly between baseline and 6 months following resettlement ( P < 0.001). This reduction remained (but did not decrease further) at 1-year follow-up. Conclusions Further work is needed to evaluate the role of environmental setting on aggressive challenging behaviour in adults with ID. [ABSTRACT FROM AUTHOR]

Background People with intellectual disability (ID) experience a variety of health inequalities compared with the general population including higher mortality rates. This is the first UK population-based study to measure the extent of excess mortality in people with ID compared with the general population. Method Indirectly standardized all-cause and disease mortality ratios (SMRs) and exact Poisson confidence intervals were calculated by age and sex for all adults, aged 20 years or over, with moderate to profound ID living in Leicestershire and Rutland, UK, between 1993 and 2005. The general population of Leicestershire and Rutland, which has a population of approximately 700 000 individuals in this age range, was used for comparison. To explore differences within the study population, overall SMRs were also calculated by presence of Down syndrome and last place of residence (city or county). Results Of 2436 adults identified, 409 (17%) died during 23 000 person-years of follow-up. Both all-cause and disease-specific mortality were around three times higher than the general population but varied considerably with age. The largest differences were observed in people in their twenties, where all-cause mortality was almost nine times higher in men (SMR = 883; 95% CI = 560–1325) and more than 17 times higher in women (SMR = 1722; 95% CI = 964–2840). At a particular disadvantage were people with Down syndrome and women with ID living in the city. Conclusions The relatively high SMRs observed in young people and in women, particularly those living in inner city areas and with Down syndrome, deserve further investigation for possible explanations, including socio-economic factors. [ABSTRACT FROM AUTHOR]