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Background: Day and community learning centres aim to provide intellectually disabled (ID) people with social support, life skills and greater control over their lives. However, there is little research exploring the benefits of attendance from the perspective of attendees and whether these goals are met. Materials and methods: Unstructured interviews were held with four female and three male participants with a mild level of disability, from an East Midlands Mencap facility. Interviews were transcribed and analysed through the Grounded Theory approach. Results: Themes of social support, life skills, control and self-image emerged from the transcripts. This brief report focuses on issues of self-image and internal control of behaviour and emotion, as these constructs have received less attention within existing literature. Conclusions: Learning centres provide important psychological benefits for people with learning difficulties. These are often less accessible to evaluation, but are nonetheless key outcomes from the perspective of attendees.

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.

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.

Background: This study examines Weiner's recent cognitive emotional model which makes a distinction between judgements of control and responsibility and emphasizes the moderation of control by "mitigating" factors. Method: In response to four vignettes describing two conditions of control (high or low) and mitigating factors (present or absent), questionnaires rating judgements of responsibility and emotional responses (anger and sympathy) were completed by 52 care staff. Results: Analysis of the data for sympathy demonstrated that attributions of control were moderated by communication ability and that the effect of control upon sympathy was mediated by the judgement of responsibility. Conclusions: The data offer tentative support Weiner's account of the mitigation of control attributions in making responsibility judgements and their subsequent effects on emotional responses. Implications for research and clinical work are discussed.

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 In studies involving people with intellectual disabilities, photovoice is increasingly used to include the voice of participants. Analysing existing literature, the present authors found that photovoice was used in various forms with different outcomes. These studies describe both obstructing and facilitating factors. The present authors designed a more standardized approach of photovoice and developed an alternative strategy: 'guided photovoice.' Method The 'guided photovoice' approach was tested on fourteen participants with intellectual disabilities. The outcomes of the approach were evaluated. Results The effectiveness of the approach varied with the participants' capabilities and needs. Some participants were talked more while taking photographs, others told their story easily during the interviews. The use of follow-up questions was helpful to deepen the interview. Conclusions A more standardized, guided photovoice approach is a helpful addition to the various options for using photovoice; it is important to decide which approach best fits the needs and capabilities of the participants. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities commonly experience multiple barriers to 'going out'. Aims: This paper explores what barriers prevented people from going out, and if the extent and nature of going out changed over time for people with intellectual disabilities as the COVID‐19 pandemic progressed. Methods: Data are drawn from a wider study that explored, at four time points, the experiences of people with intellectual disabilities through the COVID‐19 pandemic in the United Kingdom. Findings: The number of people leaving the house for almost all reasons increased over time through the pandemic, except for some outdoor participation and exercise. However, there was a significant decrease in outdoor exercise at the final time point of the study. Reliance on other people and a lack of availability of support were identified as barriers. Conclusion: A combination of factors restricted the extent to which people were going out even after COVID‐19 protections were lifted. [ABSTRACT FROM AUTHOR]

Background: Active Support is a staff practice that aims to increase engagement of people with intellectual disabilities. This study seeks to: (1) identify the outcomes of staff using Active Support and how these are measured; (2) identify how the views of people with intellectual disabilities have been included in Active Support research. Method: A scoping review was conducted of peer‐reviewed articles about Active Support published between 2009 and 2023. Results: Sixteen articles were identified. Outcomes included engagement, the quality of staff support, choice and challenging behaviour. Structured observations were the most frequently used measurement method. Only two studies explored people with intellectual disabilities' perspectives about Active Support. Conclusions: Consistent use of similar measures is a strength of Active Support research. Including perspectives of people with intellectual disabilities may provide insight into dimensions of support not been measured and assist in further developing these measures and Active Support practice. [ABSTRACT FROM AUTHOR]

Background: There is established evidence of complicated grief among people with an intellectual disability. This paper describes the process of adapting complicated grief therapy (CGT) for this population. Method: Action research documented the adaptation of CGT. Qualitative methods included analysing meeting notes, reflective interviews with two members of the team involved in adapting the materials, and interviews with six professionals working in disability settings who reviewed the adapted materials. Results: Key processes included adapting the standardised tools that form part of CGT and developing adapted approaches to abstract concepts related to death, dying and bereavement. Key therapeutic components such as imaginal revisiting and the role of significant others required adaptation for implementation with people with intellectual disabilities. Conclusion: The importance of adapting evidence‐based therapies for people with intellectual disabilities is emphasised. This research provides an adapted form of an established therapy for piloting with this population. [ABSTRACT FROM AUTHOR]

Introduction: Easy Read health documents prepared for people with intellectual disabilities are often generated from Standard Texts. Language in Easy Read versions is typically assumed to be simpler. However, simplification of language may have unintended consequences. This study aimed to explore the differences in language used between Easy Read health material and the Standard Text versions of the same material produced for the general population. Methods: Five Easy Read/Standard Text pairs were sampled and analysed using Systemic Functional Linguistics. This addressed: how people with intellectual disabilities and others were represented by language, the author stance in relation to the reader and the overall organisation of the text. Results: The Easy Read versions often used language that was less empowering and inclusive. Conclusion: Increased awareness of author power and better knowledge of the impact of language choice could help to redress these issues. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities remain disadvantaged in many aspects of everyday life. Capability approach is an underused approach in social care research and has at its core the importance of having capabilities or opportunities to do what we value. We use this approach to explore how people with intellectual disabilities can be supported to lead flourishing lives. Methods: Interviews and focus groups were conducted with 50 people with intellectual disabilities and 28 family carers. Data were analysed using an adapted template approach and conceptual analysis. Results: Our analysis led to the identification of one overarching theme; 'Doing what you love and growing' and sub‐themes; 'Choice, opportunity and empowerment', 'Being out in the world' and 'Lowered expectations and static lives'. Conclusion: People with intellectual disabilities can lead capability‐deprived lives. Methodological and practice innovation is needed to better understand what people value and ensure they have capability sets that enable flourishing lives. [ABSTRACT FROM AUTHOR]

Background: Research suggests that people with intellectual disabilities have a higher risk for cardiovascular disease than the general population. The aim of this study was to identify barriers for the prevention, diagnosis, and treatment of cardiovascular disease for people with intellectual disabilities. Method: We conducted individual interviews with relatives and general practitioners and focus group interviews with staff working at an assisted home facility, a cardiac ward, an obesity clinic and two rehabilitation centres (n = 33) in Norway. Inductive approach and thematic analysis were used to analyse the data. Results: We identified barriers on an individual and a structural level. The underlying reason for these barriers is that health problems, such as cardiovascular disease, are regularly overlooked as the condition of intellectual disability overshadows other possible diagnoses. Conclusion: This focus on intellectual disability rather than other explanations leads to shortcomings in the prevention, diagnoses, and treatment of cardiovascular disease in this group. [ABSTRACT FROM AUTHOR]

Background: Talking therapy for people with intellectual disabilities is often specifically adapted. One adaptation is the involvement of significant others in therapy, however, there is no systematic description of the use of this adaptation in routine clinical practice. Method: An online survey of UK psychologists regarding the inclusion of significant others in individual therapy with people with intellectual disabilities. Data were analysed using qualitative content analysis. Results: Ninety‐five psychologists who work with people with intellectual disabilities provided responses to questions regarding the decision to include significant others in therapy, factors that make including significant others more or less likely and how the role of significant others is explained to them. Conclusions: Psychologists consider a range of factors in deciding the involvement of significant others. We discuss implications for training of therapists working with people with intellectual disabilities, issues of consent and how the roles of significant others are understood. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are more likely to be prescribed psychotropic medication than the general population and are frequently prescribed multiple medications. Understanding people with intellectual disabilities and carer perspectives is essential to improving the quality of psychotropic medication prescribing and usage. Method: A rapid review explored people with intellectual disabilities' understanding of psychotropic medications, as well as family members and paid carers, and how this understanding can be improved. Results: Twenty‐one journal articles were included. Lack of understanding of medication was universal, with participants often unaware of adverse effects, alternatives, and rights around medication. There was also a lack of involvement in decision making for all participants. Some interventions aimed at people with intellectual disabilities or paid carers helped to improve knowledge. Conclusion: Evaluating how best to improve psychotropic medication understanding for people with intellectual disabilities, family members and paid carers should be a focus for future research. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are rarely involved in research on quality of life. The study sought to answer the question: what do people with intellectual disabilities believe improves or hinders their quality of life? Method: Using an inclusive, accessible research design, 18 participants met in small groups to answer the study's question using their choice of arts‐based media. Participants completed the analysis collaboratively, identifying key themes among their responses. Results: The participants concluded that supports, well‐being, hobbies, and activities contribute to quality of life. Lack of accessibility, assumptions, negative behaviours, stress, and negative people (staff, roommates, people in general) were identified as detractors of quality of life. Conclusions: To continue to make progress in improving the quality of life of individuals with intellectual disabilities, the voice of those with intellectual disabilities is key. The results suggest key areas of focus to make these improvements. [ABSTRACT FROM AUTHOR]

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.

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.)

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.

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.

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.

Background: Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services. Materials and Methods: Face-to-face interviews with service users, carers and community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers. Results: Positive aspects included the provision of respite, particularly for carers, and good basic care. These were outweighed by a perception of the admission as disempowering and lacking in flexible treatment provision. Accessing help emerged as a major problem, as well as the prospect of staff neglecting the specific needs of people with intellectual disabilities. Conclusions: While there were some indications of improvements in line with recent policies and guidance, mainstream services seem a long way off realizing aims of easy accessibility, person-centred practices and active partnership with intellectual disability services.

Background: Policy objectives for people with intellectual disabilities include day service modernization and the promotion of paid employment and quality of life. Quality of life is under represented as an outcome measure in vocational research. This research compares subjective and objective quality of life, and quality of work environment for adults with intellectual disabilities in supported employment, employment enterprises and day services with non-disabled workers in community employment. Methods: Comprehensive Quality of Life Scale, and Work Environment Scale were collected for people with intellectual disabilities: 17 supported employees; 10 employment enterprise workers; 10 day service attendees; and 17 non-disabled work colleagues of supported employees. Results: Supported employees reported higher objective quality of life than employment enterprise workers and day service attendees. Non-disabled co-workers reported higher objective quality of life and autonomy at work than the three groups of people with intellectual disabilities. Supported employees reported higher subjective quality of life than non-disabled co-workers. Conclusions: The findings support the utility of supported employment as a means to provide constructive occupation and enhanced quality of life to people with intellectual disabilities. However, closing the gap with respect to non-disabled co-workers on objective quality of life measures represents a challenge and will require improving the quality of job finding and workplace support and the training provided.

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: Research into self-harm among people with intellectual disabilities has focused predominantly on high frequency internally maladaptive behaviour among people whose disability is severe or profound. Research into different forms of self-harm, such as cutting or burning the skin, found in those with mild intellectual disabilities; especially those living in secure accommodation, has largely been neglected, although there has been recognition of its impact on individuals and staff working in this field. This study aimed to address this issue through exploration of the experiences and understanding of self-harm among people with intellectual disabilities living in secure accommodation. A second aim was to explore experiences of interventions associated with this behaviour. Method and Results: Semi-structured interviews were carried out with nine people who self harm, have intellectual disabilities and had been placed in secure accommodation. Interpretative Phenomenological Analysis yielded three master themes. The first related to the interpersonal context of self-harm and included sub themes relating to past experiences of abuse and loss, and current issues of control and protection. The second master theme related to the emotional experience of self-harm, which varied throughout the process of self-harm and was characterized by anger, frustration, hopelessness, relief, guilt and regret. The third master theme related to the management of self-harm. Participants had experience of helpful individual and collaborative strategies, as well as interventions that were experienced as controlling, unhelpful or ridiculing. Conclusion: Emerging themes are considered in relation to the wider-self-harm literature and current psychotherapeutic models. A number of limitations to the study are noted and the use of this methodology with people with intellectual disabilities was discussed.

Aims: The aims of the present study were to explore the perceptions of general practitioners (GPs) in the provision of health care services for people with intellectual disabilities and to analyse GPs' priorities in the delivery of health care services to this group of people in Taiwan. Methods: The study employed a cross-sectional design and was conducted by a census method, the aim being to collect information from all GPs in Taiwan. A questionnaire was mailed out, between 10 April 2006 and 16 June 2006, and the responses provided by 331 GPs (response rate = 16) were included in the analysis. Results: The results showed that most of the respondents did not have sufficient experience to deal with patients with intellectual disabilities and lacked adequate knowledge about intellectual disabilities. Indeed, respondents expressed the need for on-the-job training in the field of intellectual disabilities and generally agreed that their role in providing health care services for people with intellectual disabilities was important. However, they were generally not satisfied with the achievements of their role on health care issues. The study highlighted that many issues need to be prioritized for people with intellectual disabilities in relation to policy planning at different health care stages (primary, secondary and tertiary health care). The results also revealed that those senior GPs with considerable experience in treating people with intellectual disabilities were more likely satisfied with their role in providing health care for this group of people. Conclusions: It is concluded that Taiwanese health and welfare authorities need to focus more carefully on issues concerning deficiencies in the training of GPs, and to employ appropriate strategies to address health care issues raised in the present study so as to improve the quality of care for people with intellectual disabilities.

Background: Employment is viewed by policy makers as both a human right and as a means of changing the marginalized status of people with intellectual disabilities, with important social and emotional benefits. However, there has been little longitudinal research examining the experience of people with intellectual disabilities in the workplace. Methods: Thirty-five individuals with mild to borderline intellectual disabilities participated in this study. They were recruited from supported employment agencies in Scotland. A longitudinal approach was adopted, with the participants being interviewed around the time of starting their jobs, and again 9-12 months later. Results: The content analyses of the semi-structured interviews indicated that the participants perceived continuing benefits from entering mainstream employment, including more purposeful lives and increased social status. However, over the follow-up period the participants reported few social opportunities that extended beyond the workplace, and an anxiety about their competence to meet employers' demands remained a concern for some. Conclusions: The discussion addresses the importance of understanding work in relation to the participants' wider lives, along with the longer-term role for supported employment agencies to help people achieve their social and emotional goals in a vocational context.

Background: Evidence suggests that people with intellectual disabilities experience secondary health conditions and report inequities in health status and access to health systems. Reliable information is essential to identify health disparities. A review of health interview and health examination surveys conducted in 17 European countries was undertaken to determine whether people with intellectual disabilities were represented. Method: Using the online HIS HES database, 123 health surveys were scrutinized to determine whether they contained questions relevant to the "Pomona" 18 indicator set, and whether data could be extracted specifically on behalf of respondents with intellectual disabilities. Results: Findings reveal that while items relating to 16 of the "Pomona" 18 health indicators were found in 123 of the surveys scrutinized, only nine surveys were identified as having potential to extract data on respondents with intellectual disabilities. Conclusion: These findings have implications for those charged with the collection of comparable information about population health.

Background: The aims of this study were (1) to determine to what extent body mass index (BMI), waist circumference, fat free mass index (FFMI) and skinfold thickness are feasible measurement options in people with intellectual disabilities (ID) to measure their weight status, and (2) to assess the level of agreement among these methods. Methods: BMI, waist circumference, FFMI derived from the Bioelectrical Impedance Analyser and skinfold thickness were all determined in 76 people with intellectual disabilities. Results: BMI and waist circumference could be measured in all subjects. Skinfold thickness and FFMI failed in, respectively, five and 14 people. In general, intertest reliabilities were low. For underweight people, the agreement was acceptable. Conclusions: BMI and waist circumference were feasible measurement options. Agreements among the methods were low. Implications of these results are discussed.

Background: Dental disease is more common among people with intellectual disabilities than in the general population. Improvements in oral health require individuals to engage in daily oral hygiene and regular visits to a dental practitioner; both may be challenging for the individual with intellectual impairment. Materials and Methods: A review of policies relating to behaviour management and physical restraint for individuals with intellectual disabilities and challenging behaviours was undertaken. Published studies of behaviour management in individuals with intellectual disabilities attending for dental treatment were reviewed. Reference to studies of children with average IQ and other populations were made where appropriate. Results: There is little published evidence regarding behaviour management for people with intellectual disabilities who require dental treatment. Current policies place great emphasis on pharmacological management and restrictive behaviour management techniques. There is a paucity of studies which have employed a functional analysis framework. There are few incentives for dentists to implement positive approaches to behaviour management as current systems of payment reward the completion of numbers of treatments and thus there is an incentive to complete treatments quickly rather than to spend time with patients. Conclusions: There is a need for research addressing the behaviour management of individuals with intellectual disabilities who require dental treatment, particularly the efficacy of non-restrictive techniques and the provision of incentives that reward the use of positive behaviour management among dentists. The use of restrictive techniques should be carefully monitored for compliance with best practice guidelines.

Background: Antipsychotics are the most frequently prescribed psychotropic medication for people with intellectual disabilities. Many people are prescribed this medication for "challenging behaviours" without having had a formal diagnosis of a psychiatric disorder. Antipsychotics have been reported to have severe side-effect profiles, which can hamper quality of life. Materials and Methods: Grounded theory qualitative methodology was employed to organize and analyse data from interviews conducted with eight adults with intellectual disabilities about their experiences of antipsychotic medication. Results: Respondents had little knowledge about their medication, beyond knowing their regime. Despite participants experiencing side effects, they were accepting of these effects. A "model of compliance" was generated from the analysis. Conclusions: The prescription and administration of medication is another area where people with intellectual disabilities experience lack of control and disempowerment. "Services" need to do more to include and inform people with intellectual disabilities about their medication.

Background: Media representation of people with intellectual disabilities may contribute to general perceptions held about them and reflect changes in policy and service provision. Materials and Methods: Articles from "The Guardian" newspaper in 2001 were analysed and compared to a previous analysis of material published in 1983. Results: There was much more coverage of people with autism or Down syndrome than expected from their actual frequency in the British population of people with intellectual disabilities. Newspaper reports continued to be about children more often than expected when about autism or Down syndrome, but not when about people with other intellectual disabilities. Medically related representations were less than in the past but juxtaposition with other client groups continued. More "people-first" terminology was now used except in respect of people with autism. Articles systematically under-represented complexity and severity of need. Conclusions: Policy and service changes may have contributed to the decline of medically- and child-related representations within non-specific intellectual disabilities. The continued over-representation of children in articles about autism and Down syndrome, and the generally increased reference to people with those syndromes, suggests growing differentiation within the population of people with intellectual disabilities. The focus on people with less severe or complex disabilities echoes criticisms of "Valuing People."

Background: There is an absence of research concerning the assessment of housing support worker job performance, particularly in the development of job performance measures that reflect the priorities of people with intellectual disabilities and their families. Method: A worker-oriented job analysis method was used to develop four short job performance measures for direct housing support staff, from the perspective of people with intellectual disabilities (n = 82), family members (n = 38), support staff (n = 122) and service managers (n = 115). Results: All four job performance measures showed adequate internal and test-retest reliability and showed very few associations with staff and resident characteristics, although there were no associations between the job performance measures. The service user and manager-rated job performance measures showed the widest range of associations with aspects of staff well-being, service quality and service user choice and satisfaction with life, and show the most promise as short, practical measures of the job performance of direct housing support workers. Conclusions: These methods of developing job performance measures show promise, and further investigation of user-defined staff competencies is warranted.

Background: Young people with intellectual disabilities seem to be at increased risk of developing mental health problems. The present study set out to examine the impact such difficulties can have on parents. Method: Semi-structured in-depth interviews were carried out with 13 parents and one adult sibling of 11 young people with intellectual disabilities and additional mental health problems. Results: Parents described far reaching negative consequences of the young person's mental health problems. In many parents these re-evoked intense past feelings of grief and triggered feelings of helplessness and despair. Conclusions: Parents' experiences appear to be characterized by confusion, loss and hardship. Services do not seem to be attuned to the high level of emotional and practical needs of these parents.

Background: Models of service provision and professional training differ between countries. This study aims to investigate a specialist intellectual disabilities model and a generic mental health model, specifically comparing psychiatrists' knowledge and competencies, and service quality and accessibility in meeting the mental health needs of people with intellectual disabilities. Method: Data were collected from consultant and trainee psychiatrists within a specialist intellectual disabilities model (UK) and a generic mental health model (Australia). Results: The sample sizes were 294 (UK) and 205 (Australia). Statistically significant differences were found, with UK participants having positive views about the specialist intellectual disabilities service model they worked within, demonstrating flexible and accessible working practices and service provision, responsive to the range of mental health needs of the population with intellectual disabilities, and providing a wide range of treatments and supports. The UK participants were knowledgeable, well trained and confident in their work. They wanted to work with people with intellectual disabilities. In all of these areas, the converse was found from the Australian generic mental health service model. Conclusions: The specialist intellectual disabilities model of service provision and training has advantages over the generic mental health model.

Background: Care management is the formal mechanism for linking people with intellectual disabilities with public services but little is known about these arrangements. This paper present findings from a national survey. Materials and Methods: The questionnaire covered aspects of care management arrangements and was specific to services for people with intellectual disabilities. They were sent to all social services departments in England. Results: The response rate was 81%. Variations were found in organizational arrangements, the performance of key care management tasks, and the degree of differentiation in approach according to need. Local authorities also differed in arrangements for person centred planning. Conclusions: Further review of the relative efficiency and effectiveness of different care management approaches is needed to inform policy development and promote consistency in services for people with intellectual disabilities.