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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.

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.

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.

Background: People with intellectual disabilities' voting rate within the United Kingdom remains significantly below the population average despite government enacted voting promotion measures. No published academic literature directly involves people with intellectual disabilities when considering their UK general election experiences -- this study aims to address this omission. Methods: Semi-structured interviews were conducted with people with intellectual disabilities (N = 20) about their election experiences during the 2017 (n = 18) and 2019 (n = 8) general elections. Six participants were interviewed around both elections. Data was analysed with template analysis. Results: Eight themes were produced -- election information, political knowledge, political opinions, voting choice process, polling station experience, voting outcome, capacity and support. Theme interactions impacted on election experiences. Conclusions: While acknowledging diverse experiences, voting outcomes and experiences were particularly impacted by factor interactions concerning election information and/or polling station accessibility, capacity and support. Voting promotion interventions and future research should consider these areas.

Background: People with intellectual disabilities and behaviours that challenge others are living longer. This review aimed to explore what is known about the health and social care needs, experiences, service interventions and resources of and for this population as they transition to different care contexts in the UK. Method: A rapid scoping review of published and unpublished literature was conducted based on collaborative working with key stakeholders and using systematic methods of data searching, extraction and analysis. Results: Consistent social work support, skilled staff, suitable accommodation, creative engagement with individuals and families to plan ahead, and timely access to quality healthcare are all required to promote successful transitions as people age, and to avoid unwanted/inappropriate transitions at points of crisis. Conclusions: More research is needed to assess the types of services that this population can and do access as they age, the quality of those services, and the extent to which local commissioners are planning ahead for people with intellectual disabilities and behaviours that challenge others.

Background: Despite the importance of social networks for health and well-being, relatively little is known about the ways in which adults with intellectual disabilities in the U.K. experience their social networks. Method: A systematic review was completed to identify research focused on the social networks of adults with intellectual disabilities. Studies published from 1990 to 2019 were identified. Studies were thematically analysed. Results: Quantitative, qualitative and mixed methods studies were analysed to identify key factors influencing social networks. Experiences of people with intellectual disabilities identified themes of identity, powerlessness, inclusion, family and support. These themes are discussed with reference to theories of stigma and normalisation. Conclusions: Stigma and normalisation can be used to better understand the needs, desires and dreams of people with intellectual disabilities for ordinary relationships, from which they are regularly excluded. Implications for policy and practice are discussed in relation to building and repairing often spoiled identities.

Background: This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes. Methods: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample. Findings: The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%). Implications: The implications for end-of-life care and mortality research are discussed.

Background: Population-based data are presented on the nature of dying in intellectual disability services. Methods: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF. Results: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life. Conclusion: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.

Background: Care staff supporting people with intellectual disabilities (PWID) report accepting views on PWID's sexual expression, but people with intellectual disabilities report their sexual expression is restricted by care staff. Methods: We recruited a panel of 17 UK clinical psychologists experienced in helping care staff support PWID's sexual expression. We used the Delphi Method to develop consensus-based practice guidelines for UK clinical psychologists supporting care staff in this way. Results: Having proposed three guidelines each in Round One, panel members reached consensus (=90% agreement) that 12 were important, falling under four themes: "Addressing staff attitudes," "Addressing uncertainty about rights and responsibilities of people with intellectual disabilities," "Locating the problem, being part of the solution," and "Supporting care staff to understand and reflect upon their role." Conclusions: Clinical psychologists help care staff support PWID's sexual expression by normalizing care staff concerns, encouraging reflection, clarifying PWID's rights, and prompting those at managerial and service level to support care staff.

Background: People with from minority ethnic communities face inequalities in health and health care. This systematic review considers the question of what we know about the health and health care of children and adults with intellectual disabilities from ethnic minority communities in the UK. Method: Studies published from 1990 to 2018 were identified via electronic literature databases, email requests and cross-citations. Studies were reviewed narratively in relation to identified themes. Results: Twenty-three studies were identified, most commonly focusing on South Asian communities. Very little information was identified on physical health or physical health care, with the identified evidence tending to focus on mental health care, access to specialist intellectual disability services, and inpatient services. Conclusion: Little is known about the health status of people with intellectual disabilities from minority ethnic groups in the UK. It is clear that they may experience barriers to accessing specialist intellectual disability services and other forms of health care.

Background: The need to review health service provision for children and young people (CYP) with disabilities and their families in the United Kingdom has been expressed in multiple reports--the most consistent message being that services need to be tailored to meet their individual needs. Our aim was to understand the hospital-related needs and experiences of CYP with intellectual disabilities. Method: An ethnographic study of a neurosciences ward and outpatient department was conducted within a paediatric tertiary hospital setting. Results: Five themes, developed using the acronym LEARN, explained what is important to CYP with intellectual disabilities in hospital: (i) little things make the biggest difference, (ii) eliminate unnecessary waiting, (iii) avoid boredom, (iv) routine and home comforts are key and (v) never assume. Conclusions: It is imperative that the present authors continue to challenge the idea that it is acceptable to exclude CYP with intellectual disabilities from research because of their inability to participate.

Background: Intellectual disability research has concentrated on self-reported explicit attitudes with little focus on implicit attitudes. Such attitudes are evaluations which occur with or without conscious awareness, respectively. This investigation examined participants' (N = 234) attitudes towards individuals with intellectual disabilities with reference to participants' gender, age, level of education, frequency of contact and closeness. Method: UK adults completed explicit (ATTID) and implicit attitude (ST-IAT) measures, and provided demographics via an online survey. Results: Participant demographics predicted explicit attitudes--with differing cognitive, affective and behavioural associations. Contact frequency was most significant. Implicit attitudes were not predicted, evidencing implicit-explicit attitude differences. Conclusions: The results encourage more implicit-explicit attitude relationship research regarding disability. The associations between demographics, contact and implicit attitudes should be explored further. Research should question whether implicit attitudes reflect participants' true beliefs--denoting less importance to demographics--or whether they reflect wider societal values rather than individuals' attitudes.

Background: The aim of this research was to understand the characteristics that adults with intellectual disabilities look for in a partner. There have been numerous studies that have explored partner selection for people without intellectual disabilities, but no research that specifically identified the traits valued in a partner by people with intellectual disabilities. Method: In-depth interviews were conducted with eleven participants across two UK sites. All participants were adults with an intellectual disability who had been in a relationship with a partner for over a year. The narratives were analysed utilizing hermeneutic phenomenology, guided by the theory of Van Manen (1990). Results: The findings highlighted that, regardless of age, participant's relationships typically developed within a segregated environment for people with intellectual disabilities over the past 10 years. People with intellectual disabilities expressed a wish to be loved, to be treated kindly and to have companionship. However, they did not place high value on attributes such as financial security, social status or intelligence. Conclusions: The research demonstrated how poorly integrated people with intellectual disabilities are within mainstream society. Desired characteristics and expectations for participant's relationships were rooted in a shared history and culture, which was shaped by their intellectual disability and support needs.

Background: People with intellectual disabilities have a shorter life expectancy, but healthcare improvements mean that they are beginning to live longer, with associated health difficulties. This means that there is an urgent need to focus research on ageing as well as end-of-life care. This study aimed to explore a specialist intellectual disability service for older people who are dying and how it related to their quality of life and to costs associated with care provided. Method: Data were collected for nine residents and 15 staff members of the specialist service. A single case study design with mixed methods including observations, interviews, standardized questionnaires and costs analysis was utilized. Results: We found positive results regarding overall quality of life, although individuals had limited social networks. Placement fees paid by local health trusts and social services departments were slightly higher than the estimated cost of care reflecting good financial management by a small voluntary sector organization. Conclusion: Whilst the philosophical arguments around "specialist" care persist, this service fills a gap in intellectual disability care provision.

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: 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: 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.

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: 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: 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: In the UK and elsewhere, there is a growing policy and legislative imperative to ensure that people with intellectual disabilities are supported to develop relationships, including sexual ones. However, gay, lesbian and bisexual people with intellectual disabilities may have additional needs or face particular barriers in this area of their lives. They may require particular kinds of support from the staff who work with them. But how able, or willing, are staff in services to address these issues? Method: As part of empirical, qualitative research, the authors carried out interviews with 71 staff in 20 intellectual disability services across the UK about their views and experiences of working with people with intellectual disabilities who were, or may have been, gay, lesbian or bisexual. Results: The majority of staff interviewed said that they did not feel confident working in this area. A number of barriers to doing the work were identified including a lack of policy and training as well as the prejudice of staff and parents/carers. Conclusions: The reticence of staff to engage with these issues needs addressing especially in the light of the emerging human rights of people with intellectual disabilities to develop sexual and intimate relationships.

Background: One trade-off for increased independence of adults with intellectual disabilities in developing countries is that they may find themselves more exposed to the negative perceptions held by the general population regarding the mentally ill and disabled. The aim of this study was to adapt and translate a tool to measure felt stigma in people with intellectual disabilities designed in the United Kingdom (UK) to make it culturally viable, and to determine its reliability and validity in the multi-ethnic and multilingual context of South Africa (SA) and to compare the item responses and factor structures of the tool between the UK and SA. Methods: We translated the tool into local languages and refined it by conducting focus groups and pilot studies with professionals and adults with intellectual disabilities, after which test-retest reliability, factor analysis and internal consistency were calculated. Results: Participants were from three different population groups: Afrikaans (n = 71; 37%), English (n = 67; 35%) and Xhosa (n = 53; 28%), who had mild (n = 106; 56%) or moderate intellectual disabilities (n = 85; 44%). 98 (51%) were re-interviewed. The resulting international version of the perceived stigma measure consisted of 10 questions with good test-retest reliability (kappa ranging from 0.41 to 0.59) and a similar factor structure to the UK version, despite including a different set of questions. Conclusions: There is evidence for the validity of felt stigma ratings reported by adults with intellectual disabilities, despite different cultural and health service contexts.

Background: Mental health problems are known to be hard to recognize in people with intellectual disabilities. One factor that may contribute to this is the diagnostic overshadowing bias, which describes the tendency of the clinicians to overlook symptoms of mental health problems in this client group and attribute them to being part of "having an intellectual disability". Although a small amount of research has investigated this in the USA, very little has taken place in the UK. Materials and methods: Two clinical vignettes were produced. Both described identical clinical problems, except that one vignette described a man with an IQ of 58 and impaired social functioning (i.e. an intellectual disability) and one a man with an IQ of 108 and normal social functioning (i.e. non-intellectually impaired). Psychiatrists (n = 274) and clinical psychologists (n = 412) throughout UK were randomly assigned to either the low IQ or normal IQ condition, and sent a corresponding clinical vignette. Results: One hundred and thirty-three psychologists and 90 psychiatrists responded. Diagnostic overshadowing did appear to be present. Clinicians were more likely to recognize a range of symptoms in those with IQs in the normal range than those with intellectual disabilities. Furthermore, psychiatrists appeared more likely to make this error under some circumstances than clinical psychologists. Conclusions: Diagnostic overshadowing may contribute to the difficulties that mental health professionals commonly experience in identifying mental health problems in people with intellectual disabilities. However, the methodology commonly used in this type of research has a number of weaknesses, and would benefit from an alternative approach.

Background: As part of a UK programme of work focusing on older people with intellectual disabilities, the circumstance of those who reside in generic services for older people were investigated. Materials and methods: Questionnaires were sent to 2570 residential and nursing homes in 53 local authorities across the UK. Results: Five hundred and thirty returned questionnaires identified 215 people with intellectual disabilities currently living in 150 homes. They were significantly younger than the other residents, and were placed in these homes more often because of organizational change or the ageing/death of a family carer, rather than any changes in their own needs. Several potential indicators of a low quality of life were identified, including limited opportunities to get out, to access day services, to have contact with family or friends and to receive input from professionals outside the home. Conclusions: Attention needs to be given both to people with intellectual disabilities already residing in older people's services and to the prevention of further inappropriate placements.

Background: The use of physical intervention (PI) with people with intellectual disabilities continues to cause concern. This study sought to clarify the frequency and circumstances of PI use and gather data on the characteristics of individuals subject to PI. Method: Data on individuals subject to PI were gathered by postal questionnaire completed by service providers from three samples: people who (i) had attended a PI conference and/or purchased a PI policy document; (ii) operated in a specific geographical area of England and (iii) operated specialist assessment and treatment settings for children/adults with intellectual disabilities throughout the UK. Results: Frequent PI use was reported. Restraint was most commonly reported--monthly or more frequently with most individuals. Overall, those receiving PI were more likely to be young, male, not legally restricted and identified as having an autistic spectrum disorder than those who did not receive PI. Conclusions: The relatively frequent use of PI is consistent with routine rather than last resort use. Such use carries risk of physical and psychological damage. Service providers should systematically reduce the frequency of use of PI.

Background: Research in the US and UK has demonstrated the effectiveness of person-centred planning (PCP) for people with intellectual disabilities. However, it is important to acknowledge problems that arise when implementing PCP. This paper considers barriers to PCP reported during a longitudinal study of the impact of PCP. Methods: Person-centred planning was introduced over a 2-year period for 93 people of whom 65 had a plan developed. Information was collected regarding barriers to PCP every 3 months from key informants using self-completion questionnaires. Results: Barriers to PCP were widespread particularly in relation to: availability of trained facilitators; availability of services; lack of time and reluctance of people other than paid support staff to engage in the PCP process. Conclusions: Services need to be aware of potential barriers to PCP so that strategies can be developed to overcome them, the first of which should be the ongoing training and support of facilitators.

Background: Adults with intellectual disabilities have historically been hindered, rather than supported, in their desire to form loving relationships. This paper sought to explore with them what kinds of support they wanted in the 21st Century. Method: Semi‐structured in‐depth interviews were conducted with 40 adults with intellectual disabilities in the United Kingdom. Results: Participants placed a high value on having a partner and being supported to maintain and develop a loving relationship. The factors which constrained them in achieving this included a lack of social opportunities, barriers created by social care services and limits on them exercising autonomy. Facilitating factors included access to specialist dating agencies, strong family and staff support and opportunities to learn about relationships. Conclusions: The importance of a loving relationship as a source of pleasure and meaning in the lives of adults with intellectual disabilities who are often disadvantaged in many other spheres of life is emphasised. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are at increased risk of forced marriage compared to those without intellectual disabilities. In the UK, this risk is particularly, though not exclusively, associated with South Asian communities and is linked to the desire to secure long‐term care. Method: Focus groups and semi‐structured interviews were undertaken with South Asian parents and family carers (n = 22) of adults with intellectual disability and the resultant data thematically analysed. Results: Although securing care for their intellectually disabled relative was identified as a key motivator for forced marriage, other important themes also emerged. These included cultural and religious beliefs about disability and marriage, and limited understanding of relevant laws. Factors militating against forced marriage were also identified, including fears of abuse and neglect. Conclusions: Implications for the provision of services and the need for improved access to information on forced marriage of people with intellectual disabilities are highlighted. [ABSTRACT FROM AUTHOR]

Background: People with an intellectual disability who commit a criminal offence can be detained, by a court, in a forensic inpatient facility. There is limited understanding of how inpatients with an intellectual disability and their nurses navigate risk in U.K. forensic services. Methods: A traditional literature review design was followed to map evidence (2000–2021) around the forensic and health and wellbeing risks faced by inpatients with an intellectual disability, nurses' perceptions of managing risk, and patient experiences of informing risk assessment and management. Papers were analysed thematically. Results: Findings suggest that restrictive measures to mitigate forensic risks (e.g., violence) can exacerbate the risk of poor health and wellbeing outcomes. There was some limited evidence of direct patient involvement in risk assessment and management. Conclusion: Further research is required to explore how forensic inpatients with an intellectual disability can have input in care planning, risk assessment and management. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability often receive diagnoses which may complicate their clinical care. Among these, personality disorder diagnoses are still considered contentious. Little is also known on the perspectives of staff caring for people with intellectual disability who have received a personality disorder diagnosis. Methods: Three focus groups were carried out to explore 15 healthcare professionals' subjective experiences of working with people with intellectual disability who also have a recorded additional diagnosis of personality disorder. Data were analysed through thematic analysis. Findings: Four overarching themes were identified: (a) diagnostic issues and the need for person‐centred approaches; (b) challenges and adjustments to working with combined intellectual disability and PD diagnoses; (c) the importance of multidisciplinary team training, support, and cohesion; (d) provision issues and barriers to service access. Conclusions: The themes are outlined in depth and a number of implications for clinical management and service improvement are discussed. [ABSTRACT FROM AUTHOR]

Background: Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered. Method: This paper forms part of a larger cross‐sectional study of deaths in a defined population of adults with intellectual disabilities. Data from VOICES‐SF were obtained from intellectual disability service providers for each death within their supported population over 18 months, 149 decedents in all. Results: Only 34.2% of deaths were anticipated, death was often sudden or followed a short illness. Four dying trajectories were identified, and categorized by length of illness, service use, care outcomes, symptom control and cause of death. Conclusions: Recognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying and better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed. [ABSTRACT FROM AUTHOR]

Background: Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement. Method: Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi‐squared statistics. Results: 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement. Conclusion: Death affects many people with intellectual disability. Staff require training and support in communicating death. [ABSTRACT FROM AUTHOR]

Background Creative use of legislation can produce positive change in the lives of people with intellectual disabilities. This may be 'bottom-up' or 'top-down' or at multiple levels and with multiple stakeholders. Method Using a human rights-based approach ( HRBA), four initiatives to improve services for people with intellectual disabilities in the UK are described. Results The first example explains the process of co-producing a DVD and board game to enable people with intellectual disabilities to understand their human rights. The second example considers the impact of organizational culture in the process of embedding a pilot evaluation of practical, human rights-based risk assessment and management tools. A third pilot project examines how the guiding principles of Mental Health Act (MHA) (2007) for England and Wales can be operationalized using an HRBA. Finally, improving equitable access to health care through a 'top-down' process of change involving the Green Light Toolkit is reported. Conclusion The authors consider how to approach the process and where to focus in the system, to realize meaningful change. [ABSTRACT FROM AUTHOR]

Aim To explore the experience of 'lay therapists' of a group-based cognitive behaviour therapy ( CBT) anger management intervention. Background Staff employed in daytime opportunity services for adults with intellectual disabilities took on the role of 'lay therapist' to facilitate CBT groups. Methods They were trained and supervised by clinical psychologists and interviewed 2-6 weeks after the last group session. Their experiences were explored by means of a qualitative approach, interpretative phenomenological analysis ( IPA). Results Several key themes emerged from the interview data such as 'hopes and fears', 'having a framework', 'making it work', 'observing progress', 'ingredients of success', 'the therapist role' and 'taking the group forward'. Conclusions These themes indicate that participants' experiences had been perceived as positive for themselves, the service users as well as the relevant organization although initially the therapist role had appeared daunting. [ABSTRACT FROM AUTHOR]

Background: Parents with learning disabilities report facing a widely held 'presumption of incompetence', placing them under pressure to prove their parenting competence. In collaboration with a learning disability theatre company, an inclusive research methodology explored experiences of parenting with learning disabilities, with a specific focus on the operation of stigma in parents' lives. Method: Interviews with 17 mothers and 5 fathers who self‐identified as having learning disabilities were co‐facilitated by learning‐disabled co‐researchers, and analysed using thematic analysis, with input from people with learning disabilities. Results: Thematic analysis generated four key themes; (1) positions of powerlessness, (2) assumptions of incompetence, (3) challenging assumptions and proving competence and (4) claiming power. Conclusion: Parents reported experiencing stigma and disempowerment within their networks, yet continued to embrace their valued parental identity and drew strength from involvement with self‐advocacy organisations. The research informed arts‐based performance pieces and resources aimed at training professionals and raising public awareness. [ABSTRACT FROM AUTHOR]

Background: Trauma and its sequelae is recognised as a major morbidity factor in people with intellectual disabilities, however, a lack of inquiry into how health care professionals address trauma in this adult population exists. Aims: To explore specialist intellectual disability practitioners perspectives on current health provision and developments to address trauma. Methods: Twenty‐five qualitative interviews were conducted with practitioners across 6 health service areas in the UK. Data were analysed using thematic content analysis. Findings: Seven central themes emerged: (a) unmasked trauma; (b) trauma informed care; (c) person‐centred care and support; (d) multi‐disciplinary working; (e) reasonable adjustments; (f) barriers to treatment and (g) awareness, training and education. Conclusion: Trauma‐informed care and multi‐disciplinary working are essential components for future service development. Advances in the evidence‐base for effective psychological interventions for PTSD and training and education of health care staff are needed in order to improve service provision amongst this population. [ABSTRACT FROM AUTHOR]

Background In 1995, an unpublished study (S. Hewson & C. Waters) showed that the community links of residents in 11 local National Health Services (NHS) trust houses were meagre, despite the service's stated commitment to community presence and participation. The 1995 study was repeated for the same 11 houses in 2002 to examine whether any changes had occurred. Method A test–retest design, with repeated measures was used, involving, as closely as possible, the same participants at two time points. Community links referred to the time residents spent outside their house, and the time unpaid visitors spent inside the house in the presence of the residents. Results The community links of the people studied were no better in 2002 than in 1995. Conclusions These findings question whether current service provision can deliver policy objectives for social inclusion for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Abstract The use of primary care services by three matched groups of people with intellectual disabilities was compared over a period of one year. Differences in the patterns of provision were detected between hospital intellectual disability specialists and general practitioners. The degree of behavioural disturbance and disability of the subjects were found to be the most important predictors of primary care contact. [ABSTRACT FROM AUTHOR]

Background: Some adults with intellectual disabilities need support to access the Internet. This study explores how support workers understand their role in facilitating Internet access for intimate relationships. Method: Eight support workers in the West Midlands of the UK were interviewed face‐to‐face, using semi‐structured interviews and a thematic analysis was used to interpret the data. Results: Three main themes emerged; social and organizational dilemmas (including sub‐themes of; role and moral positioning, expectations of support, and protected and reflective space), power and position and policy dilemmas. Conclusion: Support workers said that adults with intellectual disabilities should have access to the Internet for intimate relationships. There was a range of views on whether it was their job to support this. A lack of training in Internet use was highlighted. [ABSTRACT FROM AUTHOR]

Background: Little research exists comparing the social networks of people with intellectual disability (ID) from South Asian and White backgrounds. This UK study reports on the barriers that South Asian people with intellectual disability face in relation to social inclusion compared to their White counterparts. Materials and methods: A mixed‐methods research design was adopted to explore the social lives of 27 men (15 White; 12 South Asian) and 20 women (10 White; 10 South Asian with intellectual disability). Descriptive and parametric tests were used to analyse the quantitative data. Results: The average network size of the whole group was 32 members. South Asian participants had more family members whilst White participants had more service users and staff in their networks; 96% network members from White intellectual disability group were also of White background, whilst the South Asian group had mixed ethnic network members. Conclusions: Social networks of individuals with intellectual disability in this study were found to be larger overall in comparison with previous studies, whilst network structure differed between the White and South Asian population. These differences have implications relating to future service planning and appropriateness of available facilities. [ABSTRACT FROM AUTHOR]

Background: This study argues for displays of affect by people with severe or profound intellectual disabilities to be analysed in the course of everyday interactions with the people who support them. Method: Conversation analysis is applied to the affective displays of residents of a social care service for people with severe or profound intellectual disabilities to identify how such displays are taken up and form the basis for further action. Results: Three types of orientations to affect are identified: where the cause of the affect is unknown; where there is a proximal cause; and where the proximal cause is a prior action by a member of staff. Staff orient to affect as expressions of both feelings and cognitions, thereby providing the basis for self‐determination. Conclusions: Displays of affect are a communicative resource for those with severe or profound impairments and must be studied in situ if they are to inform policy and everyday practice. [ABSTRACT FROM AUTHOR]

Abstract People with intellectual disability (ID) are frequently prescribed medication for psychiatric and medical conditions. Although knowledge of medication has been researched in other populations, few studies have addressed this issue in people with ID. A questionnaire was administered to 30 people with ID to ascertain the amount of knowledge that they had of their prescribed medication. The questions which appeared to be the most difficult to answer concerned side-effects of medication, alternatives to medication and other medications which should not be taken in conjunction with the prescribed medication. The findings are discussed. [ABSTRACT FROM AUTHOR]

The use of physical intervention in response to challenging behaviour in a nonspecialized intellectual disability service setting was found to be extremely high. In addition, staff confidence in their ability to prevent and respond to crisis situations involving challenging behaviour was extremely low. All staff within this setting received training in Strategies in Crisis Intervention and Prevention (SCIP). At three-month follow-up staff felt more confident in the management of crisis, and more supported by their organization. No significant effects on the number of incidents reported were found, although the data suggested an increased tendency to use a physical intervention relative to other methods following training. The implications of these findings for service design and further research are discussed. [ABSTRACT FROM AUTHOR]

Introduction: The United Kingdom's Department for Education's advice on behaviour focuses on the power of staff and the strength of the policy in challenging behaviour, via rules, sanctions and rewards. We designed a video‐feedback intervention for staff teams in a special educational setting who were working with children with intellectual disability and challenging behaviour. The intervention aimed to raise reflective capacity on relational mechanisms that offer new response possibilities in everyday practices within trans‐disciplinary teams. Method: We conducted research with three teams (between five and seven participants in each). We report findings from two teams who were working with children (aged between 10 and 14) who staff identified as having behaviour that challenged. The intervention consisted of two video‐feedback intervention sessions, using clips of good interactions between themselves and the child and a review. These sessions took place over three or four months. Qualitative analysis was conducted to analyse changes to the language and depictions of the children. Changes to the participants' goals during the intervention were also analysed. Results: The staff's focus on the child's challenging behaviour reduced. Children who were originally depicted as isolated became depicted in relationship with peers and staff. Participants became more curious about the child and his interactions in the school and home environment. The participant's personal goals emerged through their understandings of what it meant to be good. Conclusions: Working with staff teams using video feedback can change the interactions around the child and the relational conceptualisation of the child and family. Further adaptations to the intervention are needed to raise critical reflection on the concepts that circulate around 'behaviour' that structure policy and shape everyday practices. [ABSTRACT FROM AUTHOR]

Background: Obesity is more prevalent in people with intellectual disabilities and increases the risk of developing serious medical conditions. UK guidance recommends multicomponent weight management interventions (MCIs), tailored for different population groups. Methods: An integrative review utilizing systematic review methodology was conducted to identify the types of MCIs delivered to adults with intellectual disabilities. Findings: Five studies were identified. All of the studies' MCIs were tailored for adults with intellectual disabilities. Tailoring included measures such as simplified communication tools, individualized sessions, and the presence of carers where appropriate. Conclusions: Emerging evidence suggests ways in which MCIs can be tailored for adults with intellectual disabilities but, given the few studies identified, it is not possible to recommend how they can be routinely tailored. Further studies are justified for adults with intellectual disabilities at risk of obesity‐related conditions. [ABSTRACT FROM AUTHOR]

Background The study reports the findings of an evaluation of Project SEARCH UK. The programme develops internships for young people with intellectual disabilities who are about to leave school or college. The aim of the evaluation was to investigate at what rate Project SEARCH provided employment opportunities to participants. Methods The evaluation obtained data from all sites operational in the UK at the time of evaluation ( n = 17) and analysed employment outcomes. Results Data were available for 315 young people ( n = 315) in the programme and pay and other employment related data were available for a subsample. The results of the analysis suggest that Project SEARCH achieves on average employment rates of around 50 per cent. Conclusion Project SEARCH UK represents a valuable addition to the supported employment provision in the UK. Its unique model should inform discussions around best practice in supported employment. Implications for other supported employment programmes are discussed. [ABSTRACT FROM AUTHOR]

Background People with severe and profound intellectual disabilities often spend substantial time isolated and disengaged. The nature and quality of the support appears to be important in determining quality of life. Methods Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110 people with severe and profound disabilities and complex needs. Results On average, people spent approximately 40% of their time engaged in meaningful activities, received contact from staff 25% of the time (6% in the form of assistance to be engaged). Just over one-third received consistently good active support, which was associated with other measures of quality of support and emerged as the strongest predictor of outcomes. Conclusions Quality of life and quality of support were relatively poor, although with about one-third of people receiving skilled support. Consistently good active support was the best predictor of outcome and proposed as a good indicator of skilled support. [ABSTRACT FROM AUTHOR]

Background: There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. Methods: A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi‐structured interviews with two family carers, eight paid carers and eight healthcare professionals. Findings: The study's theory produced five interrelated categories: Impact of Dementia, Challenging the Diagnosis Process, Continuum of Support, Continuity and Continuum of Understanding. Conclusions: Findings have demonstrated the importance of planning and supporting carers' holistic needs; the role of an IDDCP in the post‐diagnostic support (or lack of it) for carers; and the importance of a timely diagnosis of dementia. Recommendations for practice are offered. [ABSTRACT FROM AUTHOR]