Search

Background: People with intellectual disabilities may experience frailty earlier than the general population. This scoping review aimed to investigate how frailty is defined, assessed, and managed in adults with an intellectual disability; factors associated with frailty; and the potential impact of COVID-19 on frailty identification and management. Method: Databases were searched from January 2016 to July 2023 for studies that investigated frailty in individuals with intellectual disabilities. Results: Twenty studies met the inclusion criteria. Frailty prevalence varied between 9% and 84%. Greater severity of intellectual disability, presence of Down syndrome, older age, polypharmacy, and group home living were associated with frailty. Multiagency working, trusted relationships and provision of evidence-based information may all be beneficial in frailty management. Conclusion: Frailty is common for people with intellectual disabilities and is best identified with measures specifically designed for this population. Future research should evaluate interventions to manage frailty and improve lives.

Background: Research into befriending for people with intellectual disabilities is limited. This study aimed to explore the impact, mechanisms of change, and limitations of a befriending scheme for adults with intellectual disabilities and/or autism. Methods: Participants were recruited using convenience sampling. Thirteen individuals with intellectual disabilities and/or autism were interviewed and data thematically analysed. Results: Four themes were generated: 'Something fun for me'; 'A good connection'; 'Increasing independence'; and 'A life less quiet'. Befriending had direct benefits through the activities undertaken and the befriending relationships themselves being fun and reducing isolation. Befriending facilitated belonging, improved access to mainstream activities, and fostered independence by providing safety and support. The importance of shared interests and external support for the relationship was highlighted. Conclusions: Positive outcomes of befriending were found, supporting existing literature and revealing new information from the voices of participants with intellectual disabilities themselves.

Background: Studies have found that presence of challenging behaviours and mental health problems limits employment for people with intellectual disabilities. This study investigates the associations between age, gender, living condition, level of intellectual disability, diagnoses, behaviour, mental health, and employment in adults with intellectual disabilities in Norway. Method: A cross-sectional community-based survey including 214 adult participants (56% men) with intellectual disabilities. Results: In our sample, 25% had no organised day activity, 27% attended non-work day care, 19% attended sheltered employment, or day care with production, without pay and 29% worked in paid sheltered employment. One participant attended mainstream employment. Moderate and severe/profound level of intellectual disability, possible organic condition and irritability significantly reduced the odds of employment (paid and unpaid). Conclusion: Findings suggest unequal access to the sheltered employment that was meant to be inclusive. More individualised evaluation of prerequisites is suggested to further facilitate employment for this group.

Background: Little is known about how health issues identified at the annual health check (AHC) are followed up and addressed, how participants self-manage their health in between AHCs, and what support they receive. This research aimed to explore this. Methods: People with intellectual disabilities (n = 12), and/or their supporters residing in Wales, were interviewed following their AHC and again at 6 and 11 months. A recurrent cross-sectional thematic analysis was undertaken. Results: Five main themes emerged from interview one: going for a health check, issues identified, and actions taken, supporting the self-management of health, the personal context, and addressing health inequities. Four main themes emerged from follow-up interviews: follow-up, supporting the self-management of health, the need for reasonably adjusted health services, and going for another health check. Conclusion: A broader system of support around the AHC is required if people are to achieve or maintain the best possible health.

Background: Increasing numbers of older adults with intellectual disabilities are living with ageing parents. These families need support to plan for the future to avoid crisis interventions following parental death. Method: Interviews and focus groups were conducted with people with intellectual disabilities (aged 40+) (N = 9), parents (N = 11) and siblings (N = 16) to understand their perspectives about living with parents and future planning. Data were analysed using framework analysis. Results: Four themes were identified: 'What matters to me', 'When should we plan', 'What are the options' and 'Who will help'. Participants knew they needed to make plans but did not feel supported to do so. While they viewed moving as an opportunity for independence, they feared there were no viable alternatives. Conclusion: Person-centred resources and support are needed for families to plan for transitions in care, including proactive approaches from social services and help to prepare for conversations with social care professionals.

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: A positive conception of sexuality among people with intellectual disabilities is crucial and relies on several social and interpersonal contexts. The goal of this study is to analyse the interaction and impact of three different contextual groups: individuals with intellectual disabilities, their parents, and professionals working with them. Methods: Survey data were collected from 330 people with intellectual disabilities attending occupational centres in eastern Spain, 330 parents, and 100 professionals. Results: Correlation and variance analyses of dyad-level data show significant differences among the three groups in all variables. Professionals perceived people with intellectual disabilities to have higher knowledge of socio-sexual norms than people with intellectual disabilities actually appear to be, but they are also more concerned about aspects related to this area of people with intellectual disabilities. Compared to people with intellectual disabilities and professionals, parents perceived people with intellectual disabilities to have lower sexual knowledge. Conclusions: Our study demonstrates inconsistent perceived knowledge of people with intellectual disabilities' socio-sexual norms and sexual knowledge among the three groups, leading to disparate levels of concern regarding people with intellectual disabilities sexuality. Thus, the need to collect information from different perspectives for more accurate reporting and the critical need for sex education programs that involve the target population, but also parents and professionals who frequently interact with people with intellectual disabilities are highlighted.

Background: Services have a duty to uphold the personal and sexual relationship (P&SR) rights of adults with intellectual disability. However, little is known about how social care workers' (SCWs) perceptions of public views of intellectual disability and sexuality might affect their attitudes, believes and behaviours towards supporting P&SR needs. This exploratory study addresses this gap in knowledge. Materials and Methods: Qualitative interviews using critical incident technique were conducted with 18 SCWs. Data were transcribed and thematically analysed. Results: Four dominant themes were identified; socio-cultural, practice-policy gaps, fear and safety needs. These highlights how perceptions of public attitudes impact on SCWs' attitudes towards supporting development of P&SR both directly and through perceptions of organisational policies. This leads to prioritisation of safety needs over support for P&SR. Conclusions: Public expectations strongly influenced SCWs' interpretation of organisational policy, emphasising a need for practice-based support to manage public expectations and reduce fear.

Background: This pilot study aimed to explore the impact of visual, auditory and vestibular dysfunctions on the postural balance performance in adults with intellectual disabilities. Additionally, a comparison was made between the subjects with intellectual disabilities and a control group concerning static and dynamic balance tasks. Method: Thirty adults with intellectual disabilities and 25 control subjects received a postural balance assessment. Additionally, the experimental group was subjected to a visual, auditory and vestibular screening. Results: The experimental group performed significantly worse and/or showed more sway compared to the control group for all balance tasks (p < 0.01) except the timed up and go test. Within the experimental group, a significant positive correlation (r[subscript s](24) = 0.513, p = 0.007) was observed between the number of failed sensory screening items and the number of failed balance tasks. Conclusions: These findings suggest significant involvement of peripheral sensorial deficits in the balance problems that people with intellectual disabilities often experience.

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: A high sense of subjective well-being has been associated with more prosocial behaviours, better health, work productivity and positive relationships. The aim of this systematic review was to explore what impact self-advocacy has on the subjective well-being of people with intellectual disabilities. Method: The authors reviewed articles focusing on the perspectives of adults with intellectual disabilities engaged with self-advocacy groups. Searches were performed in PsychINFO, Web of Science, SCOPUS, MEDLINE and CIHNL databases, resulting in 16 articles meeting the inclusion criteria. A framework synthesis approach was used to extract data deductively based on the Dynamic Model of Wellbeing. Results: While self-advocacy has a positive impact on all domains of the Dynamic Model of Wellbeing, negative impacts associated with participation in a self-advocacy group were also reported. Conclusions: The benefits of participating in self-advocacy groups on the well-being of individuals with intellectual disabilities outweigh the disadvantages.

Background: Diagnostic manuals provide a strict definition of the PTSD gate criterion. Research on the adequacy of this definition in people with intellectual disabilities is lacking. This study aims to test the adequacy of the gate criterion for this population. Method: Forty-nine adults with mild to moderate intellectual disabilities and 43 caregivers were questioned. Traumatic events included in the gate criterion definition and adverse events going beyond it were assessed. It was tested whether adverse events affect symptoms of PTSD additionally to traumatic events. Results: The current data showed ambiguous findings in self- and informant report. Informant data suggested an additional impact of adverse events on PTSD symptoms. Self-report data suggested the contrary. Conclusion: Adverse events seem to have an impact on externalizing behavioural symptoms, such as hyperarousal. Self-report assessment of more specific, intrapsychic PTSD symptoms, such as intrusions and avoidance, should be addressed in future studies.

Background/Aim: To know the differences in balance of people with intellectual disability with and without obesity. Method: 549 people with intellectual disability were evaluated. Participants were categorized as obese or non-obese according to their body mass index. All participants were evaluated with tests for static and semi-static balance. Results: There were significant differences in the static balance between obese and non-obese people with intellectual disability. For women, there were not significant differences for any tests; in contrast for men, there were only significant differences in the SLSCE in people aged 37-46 years. Conclusions: Significant differences were found in static balance between non-obese and obese people. In the analyses, in consideration of gender and age range, significant differences were only found in one static balance test, in the young adult men's group. No significant differences were found in women, either in middle-aged adults or in older adults.

Background: This trial aimed to measure the effects of extrinsic and intrinsic factors on users' comprehension of health information provided in adapted written "easy read" material. Method: Sixty adults with intellectual disabilities undertook The Easy Read Task, randomly allocated with stratification by reading ability to one of four conditions (with and without simplified language/with and without mediation). Results: Neither linguistic complexity of the text nor mediation independently or combined made a significant difference to the understanding of information. Post hoc testing revealed that the group who received simplified language with mediation performed significantly better than the group that had complex text with mediation. None of the other differences between the remaining groups were significant. Conclusions: Constructing meaning needs to extend beyond a consideration of form as found in "easy read" documents to recognize the role of individual capacity for language processing.

Background: There is strong evidence indicating that paid employment is generally good for the physical and mental health of the general population. This systematic review considers the association between employment and the health of people with intellectual disabilities. Methods: Studies published from 1990 to 2018 were identified via electronic literature databases, email requests and cross-citations. Identified studies were reviewed narratively. Results: Twelve studies were identified. Studies were generally consistent in reporting an association between being in paid employment and better physical or mental health status. Conclusions: This review supports the view that the well-established association between employment and better health is similar for adults with and without intellectual disabilities. However, evidence establishing causality is lacking and further research to determine specific health benefits attributable to employment for people with intellectual disabilities and the causal pathways that operate is required.

In this study, we analyse the characteristics that define an ideal school, from the perspective of people with intellectual disabilities. we carried out an inclusive research qualitative study with 36 Spanish adults with intellectual disabilities. Information from individual interviews about educational inclusion was summarized on to notecards, allowing participants to place messages into categories on a poster board. Identified themes included facilities and resources; values and rules; intimidation; what students learn; how students learn best; exams; teachers; and classmates. Results highlight the importance of inclusive values and the need for a curriculum that meets the needs of all students.

Background: People with intellectual disabilities in staffed group homes often need lifelong support and dependency on others. Thereby, special demands are placed on staff and service managers to ensure opportunities for participation in everyday life. This study aims to explore how service managers promote participation in Swedish group homes for adults with intellectual disabilities. Method: A qualitative research design involving individual interviews with 14 service managers was used to gain an understanding of how the participation of adults with intellectual disabilities can be promoted in Swedish group homes. Results: The results comprise two main themes; Creating preconditions for participation and Barriers for promotion of participation. Conclusions: Service managers experienced that promoting service user participation in group homes was an important part of their responsibility. The findings indicate that structural strategies such as coaching, supervision and reflection are important and should be further developed.

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: The front-line management role in services for people with intellectual disabilities remains rather under-researched. The aim of this study was to examine the experiences of registered managers in services for adults with intellectual disability who exhibit challenging behaviour. Method: Interviews, primarily focussed upon staff practice, were conducted with 19 managers of staffed group homes in SE England. Transcripts were analysed using interpretive phenomenological analysis. Results: Five groups of themes emerged: monitoring staff performance, supporting new ways of working, shaping staff performance, influence of external and employing agencies, and importance of participants' personal values and experiences. Conclusion: The themes identified contribute to a conceptual framework for thinking about front-line management/practice leadership. The limitations, and potential implications, of the findings are discussed.

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

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: 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: 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: 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: 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: 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: 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: One of the most mentioned problems of web accessibility, as recognized in several different studies, is related to the difficulty regarding the perception of what is or is not clickable in a web page. In particular, a key problem is the recognition of hyperlinks by a specific group of people, namely those with intellectual disabilities. Materials and Methods: This experiment investigated a methodology based on the direct observation, video recording, interview and data obtained by an eye tracker device. Ten participants took part in this study. They were divided into two groups and asked to perform two tasks: "Sing a song" and "Listen to a story" in two websites. These websites were developed to include specific details. The first website presented an image navigation menu (INM), whereas the other one showed a text navigation menu (TNM). Results: There was a general improvement regarding the participants' performance when using INMs. Conclusion: The referred analysis indeed shows that not only did these specific participants gain a better understanding of the demanding task, but also they showed an improved perception concerning the content of the navigation menu that included hyperlinks with images. (Contains 5 tables and 12 figures.)

Background: This study compares how people with and without intellectual disabilities talk about events, beliefs and emotions in dialogues about real-life, emotive events and in a structured task assessing understanding of cognitive mediation. Materials and Methods: A cognitive-emotive interview was used to assist 19 adults with intellectual disabilities and 19 adults without disabilities in generating an account of an emotive, interpersonal event. Participants also completed a cognitive mediation task and an assessment of intellectual and verbal ability. Results: Between-group analyses indicated that participants with intellectual disabilities scored significantly lower than those without disabilities on the cognitive-emotive interview and the cognitive mediation task. Participants with intellectual disabilities generated fewer beliefs within their dialogues and were less likely to provide alternative perspectives on events. Within-group comparisons showed no significant association between the ability to talk about events, beliefs and emotions within a dialogue and performance on a cognitive mediation task, or with Full Scale or Verbal IQ scores. Conclusions: Participants with intellectual disabilities had more difficulties than those without disabilities in talking about events, beliefs and emotions. Within a therapeutic context, they are likely to require assistance to reflect on events and consider alternative interpretations, which take into account individual and environmental factors. Future therapeutic developments may benefit from placing greater emphasis on emotional understanding and the intuitive links that people make between events and emotions.

Background: People with intellectual disabilities are more likely to have diabetes and develop complications from it. Diabetes management is complex and insulin treatment in particular, people with intellectual disabilities may require additional support that is not always available. This review aimed to identify barriers and facilitators to managing diabetes with insulin in adults with intellectual disabilities. Method: Patient and public involvement (PPI) was integral to the development of the research question. A systemised review was conducted across CINAHL, the British Nursing Index and MEDLINE. PRISMA guidelines were followed. Narrative synthesis of the evidence was undertaken. Results: Barriers and facilitators to managing diabetes with insulin in people with intellectual disabilities were identified related to the individual, other people participating in their care, and broader environmental and social factors. Conclusions: People with intellectual disabilities who use insulin, require reasonable adjustments to education, support, and a person‐centred approach to facilitate supported self‐management. More training for their supporters is needed and further inclusive research with PPI is recommended. [ABSTRACT FROM AUTHOR]

Rationale: 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. [ABSTRACT FROM AUTHOR]

Aim: To explore the usefulness of a co-designed wordless book showing processes of receiving COVID-19 vaccines designed by, and for, adults with intellectual disabilities. Methods: A qualitative evaluation of the resource using mixed methods. Semi-structured interviews were conducted with people with intellectual disabilities, carers and health professionals about resource content, and use. This was analysed thematically. A survey was circulated to intellectual disabilities networks to understand resource need, use, sharing and content. Results: Understanding the COVID-19 vaccine was a process, not a single event using one resource. A visual resource had a place in facilitating conversations about vaccines between people with intellectual disabilities and carers. Differing perspectives were expressed regarding personal needs, existing awareness of vaccine programmes and communication preferences. Changes were suggested to improve the suggested storyline and relevance around COVID-19 restrictions changing. Conclusion: A visual resource may help conversations about the COVID-19 vaccine for people with intellectual disabilities.

Background: The present study examines the relationship between stereotypical beliefs about people with intellectual disabilities, desire for social distance, and general knowledge about human sexuality with attitudes towards the sexuality of adults with mild intellectual disabilities. Method: Two hundred fifty participants from staff, family and community samples completed an online set of questionnaires. Results: Higher agreement with stereotypical beliefs and lower sexual knowledge were associated with less normalising and more paternalistic attitudes towards the sexuality of adults with mild intellectual disabilities. Higher agreement with stereotypical beliefs was also associated with more negative attitudes. On the other hand, willingness to interact with these adults was associated with more normalising and less paternalistic attitudes. Conclusions: Interventions that aim to support adults with intellectual disabilities in relation to their sexuality should also address the perceptions of their support network towards them as individuals with disabilities, as well as their knowledge about sexuality.

Background: Research suggests that a better awareness of how staff who directly support people with intellectual disabilities experience their working relationships, will contribute to understanding staff wellbeing and the quality of care they offer. This study aimed to gain insights into the lived experiences of support workers in supported living services in England. Method: Six support workers participated in semi-structured interviews, about their working relationships with service-users and colleagues. Data was analysed using interpretative phenomenological analysis. Results: Six interconnected themes emerged: The essence of good relationships; a trusting relationship as the vehicle for meeting service-users' needs; belonging to the support team; the organisational context of relationships; the social context of relationships; 'a fine balancing act'. Conclusions: The findings provide insights into staff wellbeing, indicating that developing supportive, trusting relationships with both service-users and colleagues, plays an important role in delivering effective care. Potential implications for service providers are discussed.

Background: Research into befriending for people with intellectual disabilities is limited. This study aimed to explore the impact, mechanisms of change, and limitations of a befriending scheme for adults with intellectual disabilities and/or autism. Methods: Participants were recruited using convenience sampling. Thirteen individuals with intellectual disabilities and/or autism were interviewed and data thematically analysed. Results: Four themes were generated: 'Something fun for me'; 'A good connection'; 'Increasing independence'; and 'A life less quiet'. Befriending had direct benefits through the activities undertaken and the befriending relationships themselves being fun and reducing isolation. Befriending facilitated belonging, improved access to mainstream activities, and fostered independence by providing safety and support. The importance of shared interests and external support for the relationship was highlighted. Conclusions: Positive outcomes of befriending were found, supporting existing literature and revealing new information from the voices of participants with intellectual disabilities themselves. [ABSTRACT FROM AUTHOR]

Background: Technology is ubiquitous in all aspects of daily life and research interest in the topic of digital mental health interventions (DMHI) for people with intellectual disabilities is growing. In addition, the COVID-19 pandemic has accelerated technology use in delivering mental health supports. Method: This review used a qualitative systematic literature review methodology with the aim of collating the views and experiences of adults with intellectual disabilities accessing DMHI. The electronic databases MEDLINE, PsycINFO, CINAHL and SCOPUS were searched in March 2022. Results: Five studies were selected in this review, and three major narrative themes were generated, each with sub-themes: (1) User experience with DMHI (personal experience, digital experience); (2) Relationships fostered through technology (interpersonal support, relating to virtual characters, computer as skilled helper); (3) Psychological benefits (new skills development, personal autonomy development). Conclusion: This review highlights that, although there is a diversity of views and experiences of people with intellectual disabilities, the evidence suggests that DMHI has potential to support this population given the right opportunities. Findings also point to the benefit of technology as a complement to therapy, but not necessarily as a replacement to in-person therapeutic encounters.

Background: Overprescribing of off-licence psychotropic medications, particularly antipsychotics, for challenging behaviours in people with intellectual disabilities without a psychiatric disorder is a significant public health concern. In the United Kingdom, the National Health Service England launched an initiative in 2016, 'STopping Over-Medication of People with learning disabilities, autism or both (STOMP)', to address this concern. STOMP is supposed to encourage psychiatrists in the United Kingdom and elsewhere to rationalise psychotropic medication use in people with intellectual disabilities. The current study aims to gather UK psychiatrists' views and experience of implementing the STOMP initiative. Methods: An online questionnaire was sent to all UK psychiatrists working in the field of intellectual disabilities (estimated 225). Two open-ended questions allowed participants to write comments in response to these questions in the free text boxes. One question asked about the challenges psychiatrists faced locally to implement STOMP, and the other asked for examples of successes and positive experiences from the process. The free text data were analysed using a qualitative method with the help of the NVivo 12 plus software. Results: Eighty-eight (estimated 39%) psychiatrists returned the completed questionnaire. The qualitative analysis of free-text data has shown variation within services in the experience and views of the psychiatrists. In areas with good support for STOMP implementation provided through adequate resources, psychiatrists reported satisfaction in the process with successful antipsychotic rationalisation, better local multi-disciplinary and multi-agency working, and increased awareness of STOMP issues among the stakeholders such as people with intellectual disabilities and their caregivers and multidisciplinary teams, and improved quality of life caused by reduced medication-related adverse events in people with intellectual disabilities. However, where resource utilisation is not optimum, psychiatrists seemed dissatisfied with the process with little success in medication rationalisation. Conclusions: Whereas some psychiatrists are successful and enthusiastic about rationalising antipsychotics, others still face barriers and challenges. Much work is needed to achieve a uniformly positive outcome throughout the United Kingdom.

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

Background: Views on social care related quality of life (SCRQol) are typically gathered directly from individuals or from proxy informants. Easy-read options are available, although such methods may not be accessible to those with greater communication challenges. Methods: Fifteen people with intellectual disabilities were interviewed about their SCRQoL using Talking Mats® (TM). A descriptive approach was taken to exploring what people had to say. Results: Participants reported high levels of satisfaction with living conditions and personal care routines. They were mostly satisfied with the level of choice and control they had and with their carers. Conclusions: People with intellectual disabilities who have greater communication challenges can make meaningful contributions to the assessment of the care they receive. Talking Mats is one tool which can be used to support people with intellectual disabilities to give their views.

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]

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 personcentered 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. [ABSTRACT FROM AUTHOR]

Background: Befriending is an intervention intended to provide companionship and support to socially isolated populations. This review aimed to understand the key characteristics and psychological and social outcomes of befriending interventions for adults with intellectual disabilities. Methods: Systematic searches of electronic databases (PsycINFO, MedLine and Web of Science) identified 11 studies for inclusion. A narrative synthesis of the findings was completed, along with critical appraisal of study quality. Results: Increased community participation, positive changes to social networks and mood were frequently reported outcomes for befriendees. Increased knowledge, new experiences and opportunities to 'give back' were most reported for befrienders. Conclusions: The review highlighted that existing research in this field is limited in scope and methodologically diverse. Future research should focus upon the effectiveness and long-term impact of befriending interventions, understanding the mechanisms of change, and eliciting the views of people with intellectual disabilities on their experiences.

Background People with intellectual disabilities experi-ence disparities in their health and health care. Annual health checks are intended to counter such disparity by improving access to primary health care. However, little is known about their experience of having a health check or other types of contact with primary care services. Materials and Methods The findings of two studies which used focus groups were combined. 102 people with intellectual disabilities participated in the focus groups. Results Participants' experiences of primary care services generally, and health checks in particular, were positive. However, unanimity was rare on any of the topics discussed and a number of areas of dissatisfaction emerged. Conclusions Further studies with larger and more representative samples are necessary as feedback from people with intellectual disabilities about their experience of contact with primary care staff might help to enhance GP knowledge about their health requirements. [ABSTRACT FROM AUTHOR]

Background: The employment rate for people with intellectual disabilities is low. This study aims to increase the knowledge about the association between age, gender, diagnosis, functional level, educational level, and daily activities for adults with intellectual disabilities. Method: A multinomial logistic analysis was applied to registry data on 12,735 adults with intellectual disabilities from the Norwegian Information System for the Nursing and Care Sector (IPLOS) and Statistics Norway (SSB). Results: Higher likelihood of employment and day care participation were associated with younger age but differed between genders and diagnoses. High functional level and lack of a registered functional level decreased the likelihood for employment. Educational level was not associated with employment. Conclusions: The systematic differences in employment and day care participation among people with intellectual disabilities indicate that actions are needed to prevent inequalities. Improved individual assessment of personal resources and wishes might promote participation in employment and day care. [ABSTRACT FROM AUTHOR]