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Background: At present, there is limited statistical information about mortality of people with intellectual disabilities in England. This study explores the data that are currently available. Materials and Methods: Four recent sources of data about mortality of people with intellectual disabilities in England are reviewed: the Confidential Inquiry into Premature Deaths of People with intellectual disabilities (CIPOLD); the 2013 Joint Health and Social Care Intellectual Disability Self-assessment Exercise; local registers of people with intellectual disability; and analysis of Cause of Death certificates. Results: Available data confirm that people with intellectual disability have a shorter lifespan and increased risk of early death when compared with the general population. The standardized mortality rate for people with intellectual disabilities is approximately twice that of the general population in England, with little indication of any reduction in this over time. Conclusions: Comprehensive data about mortality of people with intellectual disabilities that take account of the age and sex distribution of the population are currently lacking in England. Existing data suggest persistent inequalities between people with intellectual disabilities and the general population. There is an urgent need for better monitoring mechanisms and actions to address these.

This paper reviews why an understanding of mortality data in general, and in relation to people with intellectual disabilities in particular, is an important area of concern, and introduces the papers in this Special Edition.

The benefits of physical activity and active play for children and young people are well established. However, there is a lack of physical activity research involving children and young people with intellectual disabilities. This study investigated habitual physical activity and recess play behaviour in 70 5- to 15-year-old participants with intellectual disabilities using objective methods (accelerometers) and systematic observation techniques. Results showed that few children were active enough to benefit their physical health (23% of the cohort). No differences in habitual physical activity, sedentary behaviour, or recess play behaviours were observed between boys and girls. Participants spent most of their recess time alone or playing in small groups, with no participants engaging in large group play. Older participants spent more recess time playing in small groups rather than playing alone and participants with Autistic Spectrum Disorder spent more time engaged in active pursuits and less time standing than non-Autism Spectrum Disorder participants. Positive correlations were observed between time spent alone and physical activity. These findings contrast with those typically observed in a mainstream school setting. In conclusion, interventions designed from formative research are needed to promote physical activity within this population. Implications for school psychologists are discussed.

Background: People with intellectual disabilities face attitudinal and service barriers when attempting to form intimate relationships. To date, their experiences and views are under-represented in the existing evidence base. Method: The aim of this study was to carry out an interpretative phenomenological analysis exploring the experience of intimate relationships for nine adults with intellectual disabilities. Results: Four main themes were identified: desiring relationships; expressing sexuality; having relationships; and who has control? Together these themes demonstrated that intimate relationships were desired and important to all participants, fulfilling a variety of their needs. In addition, participants faced a number of challenges related to intimate relationships. Conclusion: The findings raise questions about how best to support people with intellectual disabilities with sexuality and intimate relationships. Implications for caregivers and services are discussed.

Attitudes towards people with intellectual disabilities have traditionally been very negative, resulting in people with intellectual disabilities being treated badly by other. This claim was explored by conducting focus groups with adults who have an intellectual disability to find out about their everyday experiences in different places and using different services. Participants reported being treated well by some people and in some places, but being treated less favourably by other people and in other places. Being treated well happened in their home, in college, in work and in their services. People were treated less well when they were out and about, using public transport, in school or work.

Background: The current understanding of health inequities in people with intellectual disabilities does not readily translate into improvements in health status or health care. To identify opportunities for action, the 2013 IASSIDD health SIRG conference organized ten intensive workshops. Materials and methods: The workshops each addressed separate topics, a workshop of self advocated was included as well. Workshop reports were analyzed using a qualitative thematical analysis approach. Results: A total of 134 participants attended the workshops. The analysis of the workshop reports resulted in three main themes: approach, know-how and visibility and a pervasive theme, that of person-centered support. Conclusion: Everyone that can contribute to better care should be empowered and facilitated to do so, environments should be accessible and inclusive in nature. Sharing experiences, expertise and data sources within and outside intellectual disabilities care and research were mentioned as ways forward. Strong (policy) visions, felt urgency and shared responsibility are required.

Background: The aim of this study was to examine the effect of volunteering for Special Olympics Games (SOG) on the attitudes of volunteers towards inclusion of people with intellectual disabilities. Method: A repeated measures design with 3-week follow-up was used. There were 100 volunteers recruited for the study and 90 of them completed the study. Results: It was revealed that a 1-week exposure to the SOG improved volunteers' attitudes towards inclusion of people with intellectual disabilities significantly (P = 0.016). Females had more positive attitudes than males at all three time points of measures. The interaction effect of gender was not significant. Conclusions: A 1-week exposure to the SOG can enhance volunteers' positive attitudes towards inclusion of people with intellectual disabilities and this effect can maintain for up to a month.

Intervention for behavioural and psychiatric disorders in people with intellectual disabilities often only takes place once these conditions are well established and more resistant to change. As an alternative, this paper promotes a public health prevention model and maps out opportunities for intervention at primary, secondary and tertiary levels. The resulting model is partly derived from generic research into these issues and partly on specific evidence on interventions for people with intellectual disabilities; it also contains more theoretical considerations. The additional research that is necessary to demonstrate the efficacy of the interventions identified is also considered. Central to this proposal is a greater integration of issues for people with intellectual disabilities within much broader policy and research agendas.

This article examines two methodological issues regarding ways of obtaining and analyzing outcome data for people with intellectual disabilities: (a) self-report and proxy-report data and (b) analysis of population-based data sets. Some people with intellectual disabilities have difficulties with self-reporting due to problems of understanding and communication. However, there are serious doubts about the validity of proxy data for subjective issues. One important challenge with secondary analysis of population-based data sets is the difficulty of accurately identifying survey participants with intellectual disabilities. In both areas examined, it is important to recognize these constraints when interpreting research based on such data.

People with intellectual disabilities have poorer health than their non-disabled peers. They are also more likely to be exposed to a wide range of environmental adversities in childhood. Research undertaken in the general population has demonstrated that exposure to environmental adversity in childhood can have an adverse impact on health and well-being across the life course. Recently, research in this area has added new breadth and depth to our understanding of: (1) the extent to which cumulative exposure to environmental adversities across the life course, but especially in early childhood, can reduce health and well-being; (2) the social, psychological and biological mediating pathways through which environmental adversities may impair health; (3) the processes associated with resilience and vulnerability in the face of exposure to adversity; and (4) the social significance of these effects in accounting for the magnitude of the inequalities in health that are apparent both between and within populations. This new knowledge is making a significant contribution to the development of social policies that seek to combine health gain with the reduction in health inequalities. This paper attempts to apply this knowledge to research aimed at understanding and improving the health and well-being of people with intellectual disabilities. (Contains 1 figure and 1 footnote.)

Background: This study explored the personal experiences of family carers and residential care staff in supporting adults with intellectual disabilities through the process of bereavement. Method: A semi-structured interview was used to interview 11 carers on their experience of supporting adults with intellectual disabilities through the process of bereavement. The transcripts were analysed using interpretative phenomenological analysis (IPA). Results: A total of five superordinate themes were identified: (i) Factors making the experience difficult for carers, (ii) Factors that helped carers, (iii) Carers' perspectives on the responses of people with intellectual disabilities, (iv) Approaches to supporting people with intellectual disabilities and (v) Carers' perspectives on support. Conclusions: Supporting people with intellectual disabilities through bereavement is an emotionally demanding task for carers. The support needs of carers need to be acknowledged and addressed in order to ensure that adequate support is available to people with intellectual disabilities following bereavement.This study explored the personal experiences of family carers and residential care staff in supporting adults with intellectual disabilities through the process of bereavement.

Background: There is insufficient evidence to guide decisions around (non-)disclosure of bad news of life-limiting illness and death to people with intellectual disabilities. Aim: The aim of this study was to develop guidelines for decisions about (non-)disclosure of bad news around life-limiting illness and death to people with intellectual disabilities, by examining stakeholders' preferences (and reasons) around disclosure and non-disclosure. Materials and methods: Focus groups and interviews were held with 109 participants: people with intellectual disabilities, family carers, intellectual disabilities professionals and medical healthcare professionals. Results: People with intellectual disabilities had wide-ranging views about disclosure. Reasons for non-disclosure included: preventing distress; too difficult for the bearer of bad news; the bearer of bad news lacks knowledge; inability to understand; no sense of time; conflicting views among stakeholders. Reasons for disclosure included: a right to know; knowledge helps the person cope; need for involvement. Conclusion: Disclosure of bad news could cause harm in some situations, but this needs careful assessment. The authors present guidelines for disclosure that now need to be tested in practice. (Contains 4 figures.)

Background: Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers. Materials and Method: This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis. Results: Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability of appropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support. Conclusions: Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities to develop and be part of the community; and carers being shown respect, listened to and involved in decisions. (Contains 1 footnote and 2 tables.)

Background: For decades, the field of quality of life for people with intellectual disabilities has focused on the improving the external life conditions. However, scarce research has examined the contribution of person-related psychological resources such as emotional competence (EC) on well-being in this population. Materials and Methods: Using a cross-sectional design, 139 adults with intellectual disabilities completed different measures: Subjective Happiness Scale, Satisfaction with Life Scale, Positive Affect and Negative Affect Scale and Wong and Law Emotional Intelligence Scale. Results: Emotional competence shows a positive and significant association with life satisfaction and happiness. EC dimensions were predictors of well-being beyond socio-demographic variables and dispositional affectivity. Conclusions: Our findings provide preliminary evidence of the potential value of considering EC in the improvement in the quality of life of people with intellectual disabilities. Professionals interested in intellectual disabilities care might consider training programmes based on EC as an additional intervention strategy aimed at improving well-being. (Contains 2 tables and 2 figures.)

Background: People with intellectual disabilities face barriers that affect their sexual health. Sex education programmes have been developed by professionals working in the field of intellectual disabilities with the aim to overcome these barriers. The aim of this study was to explore the development of these programmes. Methods: Sex education programmes geared to people with intellectual disabilities were examined in the context of the Intervention Mapping protocol. Data were obtained via interviews with the programme developers. Results: All programmes lack specific programme outcomes, do not have a theoretical basis, did not involve members of relevant groups in the development process and lack systematic evaluation. Conclusions: Based on our findings and the literature, we conclude that these programmes are unlikely to be effective. Future programmes should be developed using a more systematic and theory- and evidence-based approach. (Contains 6 tables.)

Health literacy research and scholarship has largely overlooked the experiences of people with intellectual disabilities (ID), though growing concern about the health inequalities they face has increasingly given rise to health promotion interventions for this group. However, these interventions reference a rather limited vision of health literacy and largely fail to offer people with ID opportunities to develop capabilities to interact with health information in a more critical manner or to develop their understandings of how the wider social context impacts on their own experiences of health and health care. In this paper I offer some explanations for why people with ID have been excluded from the critical health literacy field. I suggest ways that a critical health literacy frame can advance understandings of (1) what literacy in general means for people with ID; (2) what it means for them to take part in critical health literacy practices, and (3) the nature of health texts--what they are and what they do for people with ID. I conclude with remarks about what involvement in critical health literacy initiatives might offer people with ID and also what a consideration of the experiences of people with ID can offer critical health literacy theorizing and research.

Background: While several validated measures of the life circumstances of people with intellectual disabilities (ID) have been developed, this stream of research has not yet been well integrated with environmentally oriented criminological theory to explain offending among people with ID. In this study, we attempt to provide a preliminary integration through an investigation of the relationship between contemporary life experiences, well-being, choice and offending among people with ID, exploring the relevance of two classic criminological theories (theories of strain and social control). Materials and Methods: Questionnaire measures were used to compare a range of "ordinary" life experiences [the "Life Experiences Checklist" (LEC)], subjective well-being (the "Personal Well-being Index-ID") and the extent of choice (the "Choice Questionnaire"), between offenders (N = 27) and non-offenders (N = 19) with ID recruited through integrated (NHS and Local Authority) multi-disciplinary teams (community teams for adults with learning disabilities). Results: Using regression analyses to explore the strength of associations with offending, it was found that an indicator of impoverished personal relationships, from the LEC provided the best predictor of offending. This finding appears to favour criminological explanations based on social control. Conclusions: Existing measures of life circumstances can be used to explore environmentally oriented criminological theories, bringing benefits to our understanding and treatment of offenders with ID living in community settings.

Background: The topic of funerals within the life cycle approach to care in the UK remains largely absent. This small exploratory study sought to investigate how practitioners deal with this sensitive issue and to capture the views of older people with and without intellectual disabilities about funerals. Methods: A semi-structured questionnaire was administered to 40 service managers, and five focus groups for 26 people with and without intellectual disabilities were facilitated. Questionnaires were subjected to thematic content analysis; focus group data were analysed using a grounded theory approach. Results: Managers demonstrated confusion about organizing the funerals of people with intellectual disabilities. Few differences existed between the views of people with and without intellectual disabilities in relation to funerals and a number of core themes were identified including the lack of opportunities to attend funerals. Conclusions: More thought and practical interventions are needed to support vulnerable people to participate in the funerals of people they know.

Background: Loss is a universal experience and death is perceived as the ultimate loss. The overarching aim of this research is to produce a qualitative, flexible, interactive, computerised tool to support the facilitation of emotional expressions around loss for people with intellectual disabilities. This paper explores the process of using Participatory Action Research (PAR) to develop this tool. Materials and Methods: Participatory Action Research provided the indicative framework for the process of developing a software tool that is likely to be used in practice. Results: People with intellectual disability worked alongside researchers to produce an accessible, flexible piece of software that can facilitate storytelling around loss and bereavement and promote spontaneous expression that can be shared with others. Conclusion: This tool has the capacity to enable individuals to capture experiences in a storyboard format; that can be stored; is easily retrievable; can be printed out; and could feasibly be personalised by the insertion of photographs. (Contains 4 figures.)

Background: Although there is no strict definition of frailty, it is generally accepted as a state of high vulnerability for adverse health outcomes at older age. Associations between frailty and mortality, dependence, and hospitalization have been shown. We measured the frailty level of older people with intellectual disabilities (ID). Furthermore variation in gender, age, and level of ID were identified. Results were compared to a frailty study in the general European population. Methods: This research elaborates on a large cross-sectional study: Healthy Ageing with Intellectual Disability (HA-ID). Nine hundred-eighty-two men and women (greater than or equal to 50yr) with ID were included. Based on the collected data, we developed a frailty index with 51 health-related deficits, and calculated a frailty index score between 0 and 1 for each individual. Deficits included physical, social and psychological problems. Results: The mean frailty index score was 0.27 (standard deviation 0.13). Frailty was positively correlated with age (r = 0.297, p less than 0.001). More severe ID was associated with higher frailty scores (beta = 0.440, p less than 0.001). The upper limit of the FI was 0.69, which was consistent for all age categories. Conclusion: As people with ID are getting older, the question whether additional years are spent in good health becomes salient. Here, people with ID over age 50 had frailty scores similar to most elderly people over 75y. Future research is needed to confirm if frail elderly people with ID have an increased risk of adverse health outcomes. (Contains 4 figures and 3 tables.)

A number of studies have used mindfulness-based interventions to influence the behavior of people with intellectual disabilities, to improve their quality of life, and to reduce challenging behavior. The present review critically evaluates 18 studies and assesses the clinical and academic impact of their findings. Strengths identified included replicable methodological approaches, use of multiple baseline designs, strong construct and criterion validity, and consideration of the mechanisms by which mindfulness influences behavior change. Limitations included a lack of randomized controlled trials, inclusion of qualitative data without structured analysis, limited use of statistical analyses, and problems with sampling leading to difficulties generalizing findings. There was also a paucity of research investigating the impact of "Dialectical Behavior Therapy" and "Acceptance and Commitment Therapy" and the role of mindfulness within these approaches. Further research is warranted in this regard. (Contains 1 table and 1 figure.)

Background: Beliefs about the controllability of behaviour have been consistently shown to be important in understanding the responses of carers to the challenging behaviour of people with intellectual disabilities (IDs). This paper reports the reliability and validity of the Controllability Beliefs Scale (CBS), a 15-item measure of beliefs regarding the controllability of challenging behaviour when used with carers of people with IDs. Methods: Two hundred and sixty-four carers of people with IDs completed the CBS, 74 people also completed the Modified Attributional Style Questionnaire and the Self-Injury Behavioural Understanding Questionnaire scale to determine concurrent and convergent validity and 34 people completed the scale twice within a 2- to 4-week period to determine test-retest reliability. Results: The scale has a two-factor structure and has adequate internal reliable. The scale is significantly correlated with the controllability, internality and stability items from the Modified Attributional Style Questionnaire, showed expected associations with behavioural and internal emotional understanding items from the Self-Injury Behavioural Understanding Questionnaire. The scale has good test-retest reliability. Conclusions: The data support use of the CBS in clinical practice and research to assess carers' beliefs regarding challenging behaviour of people with IDs. (Contains 2 tables.)

Background: Research suggests that social exclusion is a problem both for people with intellectual disabilities (ID) and for people living in rural areas. This may give rise to a double disadvantage for people with ID living in rural areas. Conversely, aspects of rural life such as community spirit and social support may protect against social exclusion in this population. This study was designed to compare a number of measures of social exclusion in adults with ID living in rural and urban areas, with the aim of identifying whether a double disadvantage exists. Method: Adults with ID were recruited from a rural and an urban area in Scotland. Participants participated in a face-to-face interview and their medical notes were accessed. Social exclusion was investigated using a number of measures comprising: daytime opportunities and physical access to community facilities (using part of the British Institute of Learning Disabilities questionnaire), recent contact with others and the quality of personal relationships (using a modified Interview Measure of Social Relationships questionnaire) and area deprivation by postcode (using the Scottish Index of Multiple Deprivation). The data were analysed using a series of binary logistic regression models that adjusted for variables including age, gender, level of ID, mental illhealth and common physical co-morbidities. Results: A representative sample of adults with ID from rural ("n" = 39) and urban ("n" = 633) areas participated. Participants from rural areas were significantly more likely to have any regular daytime opportunity [odds ratio (OR) = 10.8, 95% CI = 2.3-51.5] including employment (OR = 22.1, 95% CI = 5.7-85.5) and attending resource centres (OR = 6.7, 95% CI = 2.6-17.2) than were participants from urban areas. They were also more likely to have been on holiday (OR = 17.8, 95% CI = 4.9-60.1); however, were less likely to use community facilities on a regular basis. Participants from urban and rural areas had a similar number of contacts with other people in a wide range of situations, but the quality of relationships may have been less close in rural areas. Finally, participants lived in significantly less deprived areas when in rural compared with urban areas (Mann-Whitney "U" = 7826, "Z" = -3.675, "P" less than or equal to 0.001). Conclusions: These results suggest that adults with ID living in rural areas have better opportunities and live in less deprived areas than adults with ID living in urban areas. However, they may not hold such positive or close relationships, and this may be important when considering the subjective experience of social exclusion. (Contains 7 tables.)

Background: The demand for (care) services for people with intellectual disabilities (ID) is on the rise, because of an expanding population of people with ID as resources are concurrently diminishing. As a result, service providers are increasingly turning to technology as a potential answer to this problem. However, the use and application of surveillance technology (ST) in the care for people with ID provokes conflicting reactions among ethicists and healthcare professionals, and no ethical consensus has been reached as of yet. The aim of this study was thus to provide an overview of how ST is viewed by (care) professionals and ethicists working in the field by investigating what the ideal application of ST in the residential care for people with ID might entail. Methods: Use was made of the concept mapping method as developed by Trochim; a computer-assisted procedure consisting of five subsequent steps: brainstorming, prioritising, clustering, processing by the computer and finally analysis. Various participants (ranging from ethicists, physicians to support workers) were invited on the basis of their intended (professional) background. Prior to this study, the views of care professionals on the (ideal) application of ST in the residential care of people with dementia have been consulted and analysed using concept mapping. A comparison between the two studies has been made. Results: Results show that the generated views represent six categories, varying from it being beneficial to the client; reducing restraints and it being based on a clear vision to (the need for) staff to be equipped; user friendliness and attending to the client. The results are presented in the form of a graphic chart. Both studies have produced very similar results, but there are some differences, as there appears to be more fear for ST among care professionals in the care for people with ID and views are expressed from a more developmental perspective rather than a person-centred perspective with regard to people with dementia. Conclusions: When it comes to views on using technology both in dementia care and the care for people with ID, there appears to be an inherent duality, often rooted in the moral conflict between safety versus freedom or autonomy. What is more, elaboration on abstract concepts often presumed to be self-evident, whether ethical or not, has proven to be difficult. How ST is viewed and apprehended is not so much dependent of the care setting and care needs, but rather whether it is clear to everyone affected by ST, what one wants to achieve with ST. (Contains 2 tables and 1 figure.)

Despite considerable achievement in inclusive research, people with intellectual disabilities have been largely excluded from the critical area of data analysis and theory development. Next to the undoubted complexity of these tasks, this can partly be attributed to higher demands of representativeness that are used to judge the validity of disability research as well as missing training opportunities for people with intellectual disabilities. The paper presents data from the first core research project in German-speaking countries that was carried out within an inclusive framework. Within the FWF (Austrian Science Fund) financed project "Experiences of participation in the (vocational) biography of people with intellectual disability" at the Department of Education at the University of Vienna, the research team aimed at involving people with intellectual disability in an accompanying reference group in the process of co-construction of theory through the shared analysis of the collected qualitative data: life stories and narratives of people with intellectual disability. This paper seeks out to show the added value of this approach both methodologically and practically.

In the Netherlands, physical/mechanical restraints in the care provided to people with intellectual disabilities are still in use, with the case of "Brandon" being a recent and illustrative example. The public debate that this case triggered raised questions concerning the policy proposal in the Care and Coercion Bill ("Wetsvoorstel Zorg en dwang") and efforts to reduce the use of restraints. Thus, the authors undertook an inventory of government legislation and institutional regulations in order to obtain an insight into practices applying in other countries and to provide recommendations for developing policy on reducing the use of restraints in the care of people with intellectual disabilities in the Netherlands. Using a literature study, they observed that although the use of restraints in the care for people with intellectual disabilities is internationally regulated by the criterion of "ultimum remedium", policy is clearly not always in line with practice. Various studies of best practices have identified some common elements in seeking to limit restrictive interventions, including strong leadership in care facilities based on national policy, trained staff, a strict monitoring system, and changes in attitudes on the use of restraints, with restraints being identified as treatment failure. The authors noted that the use of restraints, and efforts to reduce their use, is a dilemma internationally. In the Netherlands, the public debate on the use of restraints has not so far led to any significant political action. While decisions on a new legal framework still have to be made, it would be advisable to include a section on jurisdiction in the policy framework and to ratify the UN Convention on the Rights of Persons with Disabilities, which has many implications for both policy and practice. In the meantime, care facilities can start working on implementation plans, including the best practices described in this study.

Background: National and international polices promote the acceptance, integration and inclusion of people with intellectual disabilities into mainstream society. However, there is little systematic research into general population attitudes towards people with intellectual disabilities, and even less research, which considers the impact of culture on attitudes. The aim of this study was to explore how young people from White British and South Asian backgrounds differ in their attitudes towards people with intellectual disabilities and above all, how they arrive at their beliefs. Materials and Method: A qualitative design utilizing focus groups and individual interviews with White British and South Asian adolescents aged 16-19 years (N = 61) was employed. Questionnaire data were collected to compare this sample to findings from a larger study run concurrently (Attitudes to people with intellectual disabilities: a cross cultural study. Thesis, University College London). Interview and focus group data were analysed using thematic analysis. Results: Thematic analysis yielded five themes and pointed to widespread confusion about the concept of "intellectual disability", not helped by the continuing invisibility of people with intellectual disabilities in the media. Participants expressed many positive beliefs, yet closer analysis revealed that underlying these may be more ambivalent or even hostile attitudes. Key differences between the two cultural groups are discussed. Conclusions: The findings highlight the need for raising public awareness and the importance of culturally sensitive support.

Introduction: Diabetes is a significant health problem amongst people with intellectual disabilities, yet there is a lack of qualitative literature looking specifically at their experiences and perceptions of living with this chronic illness. Method: Using Interpretative Phenomenological Analysis, this study explored the experiences and perceptions of four people with intellectual disabilities and diabetes. Results: Results showed that participants demonstrated some knowledge of the language surrounding diabetes, but considerable confusion and uncertainty about their illness. The impact of diabetes was described in terms of physical, emotional and social consequences, and participants spoke of diabetes in the context of co-existing health problems. Conclusions: People with intellectual disabilities and diabetes face many challenges when perceiving and coping with their illness. Gaining insight into these challenges could help health professionals work together more effectively and provide appropriate support to people with intellectual disabilities and diabetes.

Research is lacking on the effect of the deaths of fellow service users on people with intellectual disabilities. This qualitative study formed part of a project which aimed to describe the provision of palliative care to people with intellectual disabilities in Ireland and to assess the population's palliative care needs. We report on findings from 16 focus groups held with staff in which participants described their perception of the experiences of people with intellectual disabilities when other service users die. Interviews were analysed using Framework Analysis. The findings highlight the emotional impact of the death of a friend on people with intellectual disabilities. Situations where staff facilitated the involvement of services users are described, and the study points to the benefits of this approach. Possible barriers to involvement are highlighted. The findings affirm the importance of ensuring that people with intellectual disabilities have a good understanding of the concept of death to alleviate the bereavement experience.

The prevalence of underweight status is relatively high in persons with intellectual disabilities. However, it is not clear whether this is due to malnourishment. The authors sought to examine the awareness and knowledge of physicians, dieticians, and direct care staff regarding malnutrition in people with intellectual disabilities. They also sought to obtain information about their experience with problems and possible solutions. Semi-structured interviews were held with a cross-section of physicians, dieticians, and direct care staff working with people with intellectual disabilities at six different service providers in the Netherlands. Dieticians and physicians noted that malnutrition is prevalent in persons with intellectual disabilities that they see, but they were uncertain about why this is the case. On the contrary, direct care staff were convinced that malnutrition was not present. Screening of high-risk persons for the presence of malnutrition is advised. In addition, the authors recommended education of direct care staff about healthy nutrition and weight and the development of a screening instrument for malnutrition specifically for people with intellectual disabilities.

Many people with intellectual disabilities are still not being listened to by the services providing them with care and support, and when they become upset and frustrated, they are all too readily regarded as being mentally ill. To help people with intellectual disabilities describe and make sense of their experiences and feelings in a non-judgemental manner, and without the need for these experiences to be interpreted and explained, this paper describes the use of an adapted repertory grid procedure developed from George Kelley's personal construct psychology. Although such an approach has been identified as being particularly suitable for working with people with intellectual disabilities in a person-centred manner, little information has been presented and to remedy this, this paper presents an outline of PCP, its application with people with intellectual disabilities and two case reports to illustrate its use in clinical practice.

Background: Little is known of paid carers' perspectives when caring for people with intellectual disabilities at the end-of-life. Materials and methods: Sixty four individuals from intellectual disability services took part in 12 focus groups. Interviews were analysed using framework analysis. Results: Participants wanted to provide palliative care and felt the experience enriched practice. However, they were inadequately prepared to meet need and this often led to staff stress. A number of issues appeared to heighten stress: situations when end-of-life care decision making was challenging, when staff felt "pushed out" by relatives and when staff did not have sufficient support or time to provide care or mourn the loss of service users. Conclusions: The study describes issues which contribute to the development of staff stress when providing palliative care and draws attention to areas where strategies should be developed in order to improve the quality of care provided to people with intellectual disabilities.

This article systematically reviews the literature on the effects of adverse life events or trauma on people with intellectual disabilities. It is important to systematically examine empirical evidence of the effects of trauma in people with intellectual disabilities as to date the number of studies in this area is not substantial, and the effects of trauma seen in the predominately general population literature are not necessarily transferable to the intellectual disability population. Identification of the effects of trauma on people with intellectual disabilities facilitates case recognition and appropriate treatment. Fifteen articles were selected for the review, and the results suggest that studies to date have been hampered by the lack of a consistent definition of trauma and the lack of a reliable and valid means of measuring the effects of trauma in people with intellectual disabilities. The review also indicates a lack of studies establishing causal links between life events and trauma. (Contains 4 tables.)

Although longevity among older adults with intellectual disabilities is increasing, there is limited information on their premature aging related health characteristics and how it may change with increasing age. The present paper provides information of the institutional manager's perception on early onset aging and service preparation for this population. We used purposive sampling to recruit 54 institutional managers who care for people with intellectual disabilities in Taiwan. The present study employed a cross-sectional design using a self-administrative structured questionnaire that was completed by the respondents in November 2009. The results showed that more than 90% of the respondents agreed with earlier onset aging characteristics of people with ID. However, nearly all of the respondents expressed that the government policies were inadequate and the institution is not capable of caring for aging people with ID, and more than half of them did not satisfy to their provisional care for this group of people. With regard to the service priority of government aging policy for people with ID, the respondent expressed that medical care, financial support, daily living care were the main areas in the future policy development for them. The factors of institutional type, expressed adequacy of government's service, respondent's job position, age, and working years in disability service were variables that can significantly predict the positive perceptions toward future governmental aging services for people with ID (adjusted R[squared]=0.563). We suggest that the future study strategy should underpin the aging characteristics of people with intellectual disabilities and its differences with general population to provide the useful information for the institutional caregivers. (Contains 7 tables.)

From an applied behavior-analytic perspective, aggression in people with intellectual disabilities is mostly maintained by social reinforcement consequences. However, nonsocial consequences have also been identified in functional assessments on aggression. Behaviors producing their own reinforcement have been labeled "automatic" or "nonsocial" in the behavior-analytic literature, a label that bares a striking resemblance to biobehavioral explanations of reward-seeking behaviors. Biobehavioral studies have revealed that aggression activates the same endogenous brain mechanisms as primary reinforcers like food. Therefore, integrating brain-environment explanations would result in a better understanding of the functional mechanisms associated with nonsocial aggression. The purpose of this paper was to explore aggression as a reinforcing consequence for reinforcement-seeking behaviors in people with intellectual disabilities. First, the literature establishing aggression as reinforcement for arbitrary responding will be reviewed. Next, the reward-related biological process associated with aggression was described. Finally, the paper discusses what might be done to assess and treat aggression maintained by nonsocial reinforcement.

Background: The population of people with intellectual disabilities (ID) is increasing and their health needs impact on primary and secondary healthcare specialities. One important aspect of their physical health is bone health as people with ID have increased risk factors associated with osteoporosis. It has been identified that this population has an increased prevalence of low bone mineral density (BMD), osteoporosis and osteopenia. The main contributory factors for low BMD are age, use of antiepileptics, immobility and diagnosis of Down's syndrome. Methods: A literature search of electronic databases was undertaken. Studies that included people with ID were reviewed for the prevalence of osteoporosis and osteopenia. A cross-sectional survey was conducted in a community sample (n = 149) to screen for risk factors for osteoporosis. Results: The majority of studies identified increased prevalence of osteoporosis and osteopenia with associated low BMD. In most studies individuals with ID presented with more than two risk factors. In our survey, we identified an increased prevalence of risk factors associated with osteoporosis, namely use of antiepileptics (64%), immobility (23%), history of falls (20%) and fractures (11%). We found that 54% of our sample fulfilled the criteria for screening. Of those who went on to have scans, 55% had osteoporosis and 33% had osteopenia. Conclusion: We conclude that we should be screening for the risk factors associated with low BMD in adults with ID. If these are present further investigations should take place and those found to have osteoporosis and osteopenia should have treatment at an early stage to prevent morbidity and improve their quality of life. (Contains 6 tables and 3 figures.)

The purposes of this study were to investigate the potential predictors of personal burnout among staff working with people with intellectual disabilities and to investigate whether personal burnout is associated with health and work-related outcomes. A cross-sectional survey was carried out in 2011 in 30 residential facilities in northern Germany (N = 409, response rate 45%). The German standard version of the Copenhagen Psychosocial Questionnaire was used. In a multiple logistic regression analysis, we identified factors which were predictive of personal burnout, such as work-privacy conflict (OR = 1.04, 95% CI 1.03, 1.05), emotional demands (OR = 1.03, 95% CI 1.01, 1.05), role conflicts (OR = 1.02, 95% CI 1.02, 1.03), job insecurity (OR = 1.03, 95% CI 1.01, 1.05) and feedback (OR = 0.98, 95% CI 0.97, 0.99). These factors explained 49% of the total variance. Higher levels of personal burnout were significantly correlated with higher rates of intention to leave the job and cognitive stress symptoms (p less than 0.01). Low values of personal burnout were associated with greater job satisfaction, good general health, and higher satisfaction with life (p less than 0.01). The present study indicates that improving the psychosocial work environment at the organizational level may reduce personal burnout and may also diminish unfavorable outcomes, such as intention to leave or job dissatisfaction. (Contains 6 tables and 1 figure.)

This study investigated the main psychometric properties of the Self Assessment and Intervention (SAINT), a unique and recently developed Guided Self-Help tool for people with intellectual disabilities (ID). Fifty-four adults with ID identified with symptoms of anxiety and/or depression completed the study. They were between 18 and 77 years old with a mean of 39.4 years of age (SD = 13.57). Participants were recruited from both community (n = 31, 57.4%) and inpatient settings (n = 23, 42.6%). The Glasgow Depression Scale-Learning Disabilities (GDS-LD) and Glasgow Anxiety Scale-Intellectual Disabilities (GAS-ID) were used as expert measures. Convergent validity, concurrent validity, test-retest, and internal consistency were all tested on the SAINT in comparison with the GDS-LD and GAS-ID as appropriate. There were no missing data from the questionnaires. Cronbach's alpha suggested high internal consistency for the SAINT questionnaire at 0.827 and interitem correlation for internal consistency of the SAINT for any item deleted ranged from 0.788 to 0.826. In terms of convergent validity using the Spearman's Rho correlation coefficient the SAINT showed significant correlation at the 0.01 level (2-tailed) with the GDS-LD (r = 0.707), GAS-ID worries subscale (r = 0.578). The correlation for test-retest (n = 20, 37%) between Time 1 and Time 2 was r = 0.897, p less than 0.01. The SAINT has demonstrated potential as a measure for investigating mental distress for people with ID. One of the unique benefits of the SAINT is that it has a different utility from other measures used in this study that focus on psychopathology. The SAINT has not been designed as a diagnostic tool and aims to get the person to recognize and report a set of symptoms that indicates mental distress and to employ coping strategies once identified. (Contains 1 figure.)

The voice of people with intellectual disabilities (ID) is needed in the literature to best understand their unique experiences and perspectives. Researchers face challenges in conducting interviews with people with ID who are limited in conceptual and verbal language skills. It can also be difficult to obtain participants with ID because of confidentiality and additional safeguards necessary for vulnerable populations. To give voice to people with ID through qualitative research, additional considerations and interview strategies are needed. Through a phenomenological study with 14 young adults with ID, I explored strategies and ethical considerations to access participants, obtain informed consent, and conduct interviews. The research accommodations are described and suggestions for future research with people with ID are presented. (Contains 1 table.)

Background: Research on staffed housing for people with intellectual disability has identified the challenges in achieving positive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying. Method: In depth qualitative interviews were held with 22 staff in 5 different providers and who had experienced, in total, 27 deaths of people with intellectual disability. Results: The data highlight that staff felt providing a good quality of care at the end of life was an important but unrecognised dimension of their work. This work could be broken down into several different phases, dying, death and beyond death. Bad deaths were felt to be those deaths which prevented staff from "being there" with individuals over those phases.

Research with South Asian families of individuals with intellectual disabilities (ID) suggests an increased fear of stigma and isolation from the community. Evidence on attitudes towards ID among the wider community is very limited and was the focus of the present study. Responses were collected from 737 college students aged 16-19 using the Community Living Attitudes Scale--ID version. Results indicated that British South Asians (n = 355) were less in favour of the social inclusion of people with ID than White British young people (n = 382). British South Asian adolescents were more likely to hold the view that people with ID should be sheltered and not empowered. It is proposed that future inclusion policies integrate ethnic minority views whose religious and cultural values do not always conform to the core values of social inclusion policies. It is also proposed that culturally specific school based interventions could be introduced with the aims of decreasing stigma and fostering attitudes in line with the aims of normalisation. (Contains 8 tables.)

Little is known about the demographic and clinical characteristics of people with intellectual disabilities and substance abuse problems. Drawing on health care billing claims for people with Medicaid coverage aged 12-99 years, the characteristics of people with intellectual disability and a history of substance abuse (N = 9,484) were explored and compared with people with intellectual disability but without substance abuse. Age- and/or gender-adjusted odds ratios were derived from logistic regression analyses to consider differences in demographic and clinical diagnoses. People with intellectual disability and substance abuse constituted 2.6% of all people with intellectual disability, most of whom had a diagnosis of mild or moderate intellectual disability. People with intellectual disability and substance abuse problems were, on average, 2 years older than the comparison group and less likely to be White. The sample was more likely than the comparison group to have serious mental illness or depression and substance abuse-related disorders were not prevalent. These data provide a comparison point for existing studies of mental health diagnoses as well as new information about substance abuse disorders. Implications relate to the identification of substance abuse among people with intellectual disabilities as well as the establishment of demographic and clinical correlates.

Background: As institutions for people with intellectual disabilities have been replaced with community services, health care provision has developed to provide assessment and treatment, low and medium secure units for people with challenging behaviour or mental health problems. These include both public and private sector provision. Little is known about these services. The aim of this study was to describe the characteristics of the services studied and to compare the different types of service. Methods: A survey was carried out of National Health Service (NHS) and independent sector (IH) health settings providing specialist inpatient services for people with intellectual disabilities. Data were collected on setting and patient characteristics, staffing and management and care processes and outcomes. Results: Services were very unevenly distributed across England. There were differences between NHS and IH settings. IH assessment and treatment units were bigger, had higher occupancy and lower staff ratio. In all three types of unit, IH units had fewer visits to patients, used more seclusion, physical restraint and had more locked areas. They had more complaints in more services from users and (for assessment and treatment units and low secure units only) from relatives. In low secure units, they had more adult protection referrals. On the other hand, IH units used fewer agency staff in assessment and treatment units (though more in medium secure units) and provided more appraisals, more visits from commissioners, more consultations with GPs and dentists and more use of whistleblowing procedures by staff. A quarter of people in NHS assessment and treatment units had finished treatment but had no plan for discharge. Conclusions: Further research is required to determine the reasons for differences observed between IH and NHS units. The large number of people who have finished treatment emphasizes the importance of developing housing in the community with sufficiently skilled support. The large number of patients in low secure services raises the question whether this type of service is recreating the intellectual disability institutions which government policy intends to close.

Background: There has been increasing recognition of the importance and extent of abuse of vulnerable adults, including people with intellectual disabilities, leading to the development of monitoring systems. This paper reports findings from one of the largest databases in the UK collected between 1998 and 2005. Method: Analysis of the 1926 referrals relating to people with intellectual disabilities included description of the nature of abuse and the responses to the referrals, comparisons to those relating to other client groups and comparisons between those placed locally and those placed out-of-area. Results: About one-third of all adult protection referrals related to people with intellectual disability, remaining consistent over time. However, the number of referrals increased significantly. The majority of people lived in residential care or supported living and this was reflected in the nature of the referrals--people were more likely to have been abused in the care home and by staff or service users than those without an intellectual disability. The most common type of abuse was physical abuse. Sexual abuse was more prevalent in the intellectual disability sample than in other client groups. People with intellectual disability were more likely to have experienced follow-up action, usually through more monitoring. There was a different pattern of abuse seen in those placed out-of-area. Conclusions: The overall pattern of abuse is similar to that reported in earlier studies. There is some indication that residential situation and in particular being placed in a residential placement out-of-area, may be an important factor in predicting adult protection referrals.

Background: Participation in sports has been linked to a range of physical, social and mental health benefits. Little is known about the extent to which people with intellectual disabilities take part in sports. This study looks at participation in sports and factors associated with participation by people with intellectual disabilities in England. Method: Data on participation in sports and measures of personal characteristics, living situation, social participation, and socioeconomic status associated with participation were analysed based on a sample of 2784 people with intellectual disabilities in England. Results: Overall, 41% of participants had taken part in sports in the past month, nearly all of whom had enjoyed it. Of those who did not take part, 34% said they would like to. Participation in sport was associated with some personal characteristics but not with support needs, and was also associated with indicators of socioeconomic status. Conclusions: Targeting interventions to increase participation in sports by people with intellectual disabilities may make a significant contribution to improving their health and well-being.

For some, community inclusion facilitates access to alcohol and drugs and, therefore, the potential for developing substance abuse disorders. However, little is known about substance abuse treatment use among people with intellectual disabilities. Using standardized performance measures, substance abuse treatment utilization was examined for Medicaid-covered people with intellectual disabilities and substance abuse (N = 9,484) versus people without intellectual disabilities (N = 915,070). The sociobehavioral model of healthcare use guides multivariate logistic regression analyses of substance abuse treatment utilization patterns, revealing disability-related disparities. Factors associated with utilization included being non-White, living in a nonurban area, having a serious mental illness, and living in a state with a generous Medicaid plan for substance abuse treatment. Implications relate to health policy, service delivery patterns, and the need for cross-system collaboration in the use of integrated treatment approaches.

This study investigated attitudes toward people with intellectual disabilities among the general Hong Kong Chinese population and compared these to a White British sample, using the Community Living Attitudes Scale-Mental Retardation form (CLAS-MR; D. Henry, C. Keys, F. Balcazar, & D. Jopp, 1996). As predicted, attitudes among the Hong Kong Chinese public (n = 149) were less favorable than the British sample (n = 135). The former were less opposed to the exclusion of people with intellectual disabilities, less likely to view them as similar to themselves and more in favor of sheltering such individuals. Of all demographic variables examined, ethnicity was the strongest predictor of attitudes, although it only accounted for a small part of the variance in attitudes. The results are discussed in terms of policy implementation and additional research.

Background: The problem of mobbing has attracted a great deal of attention over the past few years. This concern has increased the study of the phenomena, which has resulted in many scientific publications. Mobbing has been characterized as an emerging risk at work. The aim of this study was to analyse the influence of some psychosocial factors at work--role clarity, interpersonal conflicts and social support--on mobbing and its consequences--that is, inclination towards absenteeism and psychosomatic disorders. Materials and methods: The sample included 422 employees working with people with intellectual disabilities. Structural equation modelling (SEM) was used to test the hypotheses. Results: The Hypothesized model showed an adequate fit to data, and all hypothesized relationships were significant. Conclusions: The results of this study provide support for the mediator role of mobbing in the relationship between high role ambiguity, low social support and high interpersonal conflicts and psychosomatic disorders and inclination towards absenteeism. (Contains 1 table and 2 figures.)