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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: 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: 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: Stepping Stones Triple P (SSTP) is a complex parent-mediated intervention aimed to reduce behaviours that challenge in children with moderate to severe intellectual disabilities, aged 30-59 months. Methods: To formulate a comprehensive understanding of SSTP implementation in the UK, we conducted a process evaluation collecting stakeholder views and considering intervention fidelity, dose, reach, delivery adaptations, and acceptability. Results: Fidelity and quality of delivery ratings were high. Parents perceived SSTP as valuable, reporting increased parental confidence and understanding of the child's behaviours. However, only 30% of families received an adequate dose of the intervention. Parents who only received treatment as usual described feeling abandoned by current services. Service managers emphasised the importance of availability of resources and therapist training for successful intervention delivery. Conclusions: SSTP supports effective management of early-onset behaviours that challenge. Further work is needed to ensure equitable access to the intervention across health and social care services.

Purpose: The present study investigated school absence among 1,076 5-15 year-old children with neurodevelopmental conditions (intellectual disability and/or autism) approximately one year following the start of COVID-19 in the UK. Methods: Parents completed an online survey indicating whether their child was absent from school during May 2021 and the reason for each absence. Multi-variable regression models investigated child, family and school variables associated with absenteeism and types of absenteeism. Qualitative data were collected on barriers and facilitators of school attendance. Results: During May 2021, 32% of children presented with persistent absence (missing = 10% of school). School refusal and absence due to ill-health were the most frequent types of absence, accounting for 37% and 22% of days missed, respectively. COVID-19 related absence accounted for just 11% of days missed. Child anxiety was associated with overall absenteeism and with days missed because of school refusal. Parent pandemic anxiety and child conduct problems were not associated with school absenteeism. Hyperactivity was associated with lower levels of absenteeism and school refusal but higher levels of school exclusion. A positive parent-teacher relationship was associated with lower levels of absenteeism, school refusal and exclusion. Child unmet need in school was the most frequently reported barrier to attendance while COVID-19 was one of the least frequently reported barriers. Conclusion: COVID-19 had a limited impact on school attendance problems during this period. Findings highlighted the role of child mental health in different types of absence and the likely protective role of a positive parent-teacher relationship.

This study examined the similarities/differences between the social phenotypes of Williams syndrome (WS) and autism spectrum disorder (ASD). As cultural norms may affect symptom evaluation, this study administered the Social Responsiveness Scale-2 to Japanese individuals with WS (n = 78, 4.4-44.0 years) and ASD (n = 75, 4.7-55.4 years). The scores for Social Motivation and Social Communication were significantly more severe in the ASD than WS group. Overall, the similarities and differences between the social phenotypes of the syndromes were consistent with the findings of a recent study conducted in the UK, except for the social awareness subscale score. This highlights the importance of cross-cultural investigations of WS and ASD.

Autistic individuals with intellectual disability are at greater risk of experiencing anxiety than their non-autistic peers without intellectual disability. Anxiety in this group may present as behaviour that challenges, often leading families to reach out to healthcare or support services. However, many families experience difficulties accessing services and, due to the lack of research into evidence-based anxiety interventions for people with intellectual disability, may not receive individualised support once in a service. This study explored caregivers' experiences of accessing services for autistic individuals with intellectual disability, and their considerations when developing new interventions for this population. Interviews and focus groups were completed with 16 caregivers of autistic people with intellectual disability. Reflexive thematic analysis was used to develop five themes about service access experiences, and three themes about caregiver considerations for anxiety interventions. Caregivers reported that their experiences of accessing services did not meet their expectations, and considerations for future anxiety interventions were often reflective of this. Interventions being flexible to family circumstances to aid accessibility, the embedding of peer support in services, and skills that can be generalised across the lifespan could be applied when aiming to improve outcomes and develop interventions for this under-served population.

Primary care health checks, screenings and GP consultations are often the gateway for people with intellectual disabilities to access their physical and mental healthcare. For a population who experience greater levels of health difficulties alongside significant health inequality, improving care quality and access is of major importance. This meta-ethnographic, qualitative review aims to explore people with intellectual disabilities experiences of health checks, screenings and GP visits, while assessing the quality of the current literature and synthesising findings to consider clinical and research recommendations based on third order constructs. A systematic search identified 20 studies that met inclusion criteria. Quality assessment of each paper was conducted. Meta-ethnography methods were used to analyse and synthesis findings. One overarching concept was identified: Include Me, along with seven core concepts; Empowerment and Disempowerment, Communication and Interpersonal Factors, Access and Adaptations and Biased Narratives and Shifting Perspectives. Implications for practice and future direction are discussed.

Background: The Personal Outcomes Scale (POS) is a scale developed to measure quality of life of adults (18+) with intellectual disability. Previous studies have reported good fit for Spanish and Portuguese language versions of POS. Aims: This study aimed to evaluate the factor structure of the English language version of POS when used to measure the quality of life of adults (18+) with intellectual disability in the UK. Materials and Methods: Analysis was conducted on POS data from 310 adults with an intellectual disability. First and second order factor models and multi-level models were used to assess fit. Results: There was poor fit to the data for all tested models. We estimated that 23% of variance in POS scores was accounted for by interviewer cluster. Discussion: This was the first UK-based evaluation of POS and our data did not confirm the factor structure of the POS measure. The identification of systematic variability within the dataset indicates that inter-rater reliability is a potential limitation of the POS tool. Conclusion: Further research is needed to investigate inter-rater reliability of POS interviewers and to explore factor structure.

Aim: This project sought to ascertain views and experiences of people with intellectual disabilities, their carers', and specialist intellectual disability psychiatrists as to use of telepsychiatry consultations. Background: During the COVID-19 pandemic specialist psychiatrists in intellectual disability services in the United Kingdom (UK) have explored and adopted use of telepsychiatry for psychiatric consultations. Method: An easy-read co-designed questionnaire was sent to potential respondents N = 590 potential respondents (N = 280 patients, N = 280 carers), and a separate questionnaire was sent electronically to N = 30 specialist intellectual disability psychiatrists. Findings: Responses were received from N = 192 respondents (N = 68 (24%) patients, N = 98 (35%) carers, and N = 26 (90%)) psychiatrists. Advantages of telepsychiatry cited were flexibility, and it being less disruptive to patients' routines, offering convenient practice and saving travel time and cost. Disadvantages reported included loss of rapport and relationship with patients, and an inability to conduct an effective mental state examination. Conclusion: This survey has produced equivocal evidence as to acceptability of telepsychiatry for all people with intellectual disabilities, carers and psychiatrists cannot be assumed. Some patients may need significant support to enable them to engage with such an approach.

It is now 10 years since the "European Declaration on the Health of Children and Young People with Intellectual Disabilities and their Families: Better Health -- Better Lives" was adopted by the World Health Organization. Through discussions with key informants and an online literature review, we reflect on actions and progress made in line with this Declaration to improve the health and wellbeing of children with intellectual disabilities and their families. Despite finding positive examples of policy, legislation and practice in support of children with intellectual disabilities, there are clear gaps and areas for improvement. Countries must continue to take action, as supported by the World Health Organization and other such organisations, in order to support children with intellectual disabilities in realising their fundamental human rights.

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: 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.

Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.

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.

Aim: This Quality Improvement Project sought to improve communication between patients with intellectual disabilities and their psychiatrists by sharing medical information using an easy read letter format following psychiatric review. Background: Writing directly to patients is in keeping with good medical practice. Previous studies have shown patients with intellectual disabilities prefer letters tailored to meet their needs. Method: An easy read letter was used by nine psychiatrists who handed them to 100 consecutive patients after review. Feedback of acceptability to patients was obtained using a three-item facial rating scale and the use of free text. Feedback of acceptability was obtained from participating psychiatrists. Results: Patients found the easy read letter helpful and felt it should be used routinely. Psychiatrists felt this approach was beneficial as well as aiding patient understanding of review. Conclusions: The easy read letter was reported to improve communication following psychiatric review. Limitations are acknowledged but it is concluded that an easy read letter should be adopted as routine practice following psychiatric review, for people with intellectual disabilities.

Adult siblings are potentially important sources of care, support, advocacy, and friendship for their brothers and sisters with intellectual and developmental disabilities (IDD). Drawing on data about 851 adult siblings who completed an online national survey, we examined predictors and potential key moderators of siblings' mental distress, wellbeing, quality of life, and health outcomes. Moderated regression analyses indicated that siblings experiencing higher levels of subjective poverty; siblings with brothers and sisters with lower levels of independence; and siblings who are carers and also experiencing low levels of subjective poverty, had worse outcomes and may be in need of specific supports. Compared to normative samples, adult siblings of people with IDD had worse outcomes across the measures.

Positive Behaviour Support is an applied behaviour analytic system of support that is utilised in schools and in residential care settings for children and adults with disabilities who engage in challenging behaviour. Implementation fidelity depends on appropriate staff training and organisational behaviour management. A systematic literature review is reported that evaluated the evidence in relation to change in staff and service user behaviour and the impact of organisational behaviour management systems on effectiveness, generalization, and maintenance of these outcomes. Nine relevant articles were identified and analysed according to (1) the demographics of staff and residents and methods of staff training; (2) organisational behaviour management systems; (3) staff and service-user behavioural outcome measures; and (4) the methodological quality of the study. A combination of antecedent and consequence-based training strategies was used in the studies. Eight studies reported on the organisational behaviour management systems that were used, with five reporting on the responsibility of trainees to transfer their training to their untrained teams (pyramidal training). Although the studies reported on staff behaviour change following the training, only one of the studies reported significant increases of service user quality of life as a result of staff training and only two studies provided adequate methodological strength.

Introduction: Adults with intellectual disabilities have an increased vulnerability to mental health problems and challenging behaviour. In addition to psychotherapeutic or psychoeducational methods, off-label pharmacotherapy, is a commonly used treatment modality. Objective: The aim of this study was to establish evidence-based guideline recommendations for the responsible prescription of off-label psychotropic drugs, in relation to Quality of Life (QoL). Method: A list of guidelines was selected, and principles were established based on international literature, guideline review and expert evaluation. The Delphi method was used to achieve consensus about guideline recommendations among a 58-member international multidisciplinary expert Delphi panel. Thirty-three statements were rated on a 5-point Likert-scale, ranging from totally disagree to totally agree, in consecutive Delphi rounds. When at least 70% of the participants agreed (score equal or higher than 4), a statement was accepted . Statements without a consensus were adjusted between consecutive Delphi rounds based on feedback from the Delphi panel. Results: Consensus was reached on 4 general:the importance of non-pharmaceutical treatments, comprehensive diagnostics and multidisciplinary treatment. Consensus was reached in 4 rounds on 29 statements. No consensus was reached on 4 statements concerning: freedom-restricting measures, the treatment plan, the evaluation of the treatment plan, and the informed consent. Conclusion: The study led to recommendations and principles for the responsible prescription -- aligned with the QoL perspective -- of off-label psychotropic drugs for adults with intellectual disabilities and challenging behaviour. Extensive discussion is needed regarding the issues on which there was no consensus to furthering the ongoing development of this guideline.

Background: We explored the accuracy of using the learning disability screening questionnaire (LDSQ) in services for people experiencing homelessness in the United Kingdom. Method: We examined the concordance between the LDSQ outcomes and assessments of intellectual disability. Seventy adults experiencing homelessness completed the LDSQ. Staff completed the LDSQ and a measure of adaptive functioning for 38 of this group. Nine participants received an intellectual assessment. Results: Sensitivity and specificity for the LDSQ when completed by staff was 83% and 96% respectively and 50% and 92% when completed by the individual. Seven people had intellectual and adaptive functioning in the intellectual disability range. Conclusion: The results suggest that the LDSQ would be an appropriate and beneficial screening tool to use within services for people experiencing homelessness. More accurate results would be likely if it were completed by staff.

Background: Overmedication of people with intellectual disabilities, particularly when psychotropic medications are used for challenging behavior (CB) in the absence of a psychiatric disorder, is a significant public health concern. Support staff play a pivotal role in influencing the prescribing process. Staff views and attitudes toward medication use for CB are therefore of paramount importance. Method: We have conducted four focus groups involving support staff (n = 8), home managers (n = 5) and trainers (n = 3), two of which primarily explored participants' experiences and views on using medication for CB and medication withdrawal. Results: Some participants felt medication use was justified, but others saw that as a form of chemical restraint. Most agreed that polypharmacy of psychotropics might lead to side effects. Some acknowledged the lack of shared decision-making involving people with intellectual disabilities and their families. There was universal anxiety about withdrawing the medication. Conclusions: All agreed on the need for more medication-related information.

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.

Background: This study investigated if subjective socioeconomic status (SSS) is related to self-rated health (SRH) and objective indicators of health in people with and without intellectual disability. Methods: Participants were 217 adults with, and 2350 adults without intellectual disability in Jersey. In the intellectual disability sample, 85 (39.2%) participants consented independently, while 132 (60.8%) participants consented through proxy procedures. The MacArthur Scale of Subjective Social Status was used to measure SSS. The Euro-Qol EQ-5D-5L and a five-point scale ranging from poor to excellent health were used to measure SRH. Results: Higher SSS and younger age were predictors of better SRH for the proxy-report intellectual disability group. Being employed was associated with higher EQ-5D-5L index values for all intellectual disability groups. Conclusion: As SSS was only related to SRH in the proxy intellectual disability group, further research with a larger intellectual disability sample is needed to explore its utility further.

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.

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.

People with intellectual disabilities are more likely to experience adverse childhood experiences than those in the general population. Additionally, the conceptualization of 'trauma' is far broader than traditionally understood in order to encompass the far reaching relational nature of people with intellectual disabilities traumatic experiences. This reflective account details the first steps one service took to embrace trauma-informed care as a whole systems approach. The paper is a response to calls following conference presentations about our work, to share the process of the beginning of this journey, it also aims to provide key learning points, practical considerations and questions for reflection in order to support other services to begin their own relationships with trauma-informed care.

This article aims to offer insights into how people living with intellectual disabilities by intraacting with researchers and technology, can inform and improve participation in research and the dissemination of it. It draws upon the experiences from adults with intellectual disabilities and researchers participating in the production of audio-visual material. The audio-visual material was initiated and produced by a team in UK with participants living with intellectual disabilities and was based on an earlier article written by the two researchers. This current article highlights the importance of enabling people with disabilities to participate in the research (in various phases, settings, and ways) and as such also make accountable knowledge claims which can bear effects on the life of people with disabilities in their everyday practices and in relation to technology (such as information and communication technology, ICT). The approach, based on a material-semiotic and intra-actional understanding sheds light on the following questions: How can research be guided so that people with intellectual disabilities, the target groups of the research, become involved as actors and participants in the various phases of research concerning them? Can technology, such as Information and Communication Technologies (ICT), empower people with intellectual disabilities to become involved in research concerning them? And if so, in what ways.

Background: In the United Kingdom, policy change has led to specialist intellectual disability inpatient bed reduction. Little evidence exists assessing the results for patients admitted to such units. This study evaluates the outcomes of a specialist intellectual disability inpatient unit. Method: Gender/age/ethnicity/intellectual disability severity/co-morbid psychiatric/developmental disorders, treatment length and stay data were collected. The health of the nation outcome scales for people with learning disabilities (HoNOS-LD) scores at admission, treatment completion and discharge were recorded. Analysis of these multiple variables and correlations within different patient groups was investigated using various statistical tests. Results: Of 169/176 patients (2010-2018), admission to discharge, HoNOS-LD global and all individual items score decreased significantly, for all patient categories. Treatment completion to discharge duration was significant for the whole cohort. Conclusions: This is the largest study of intellectual disability inpatient outcomes. Discharge from the hospital appears not associated with duration of treatment. Using HoNOS-LD to demonstrate treatment effectiveness is recommended.

Introduction: The aim of this systematic review was to synthesize the literature on the correlates and risk factors of anxiety among adults with ID. Methods: Following the PRISMA guidelines, a systematic search of peer-reviewed literature was conducted across six major electronic databases. From an initial screening of 844 records, 13 studies were included for full-text review. Factors associated with anxiety were categorized utilizing the biopsychosocial model. Methodological quality was evaluated. Results: Correlates of anxiety were identified at all levels of the biopsychosocial model, including psychological or psychiatric diagnoses, level of ID, gender, chronic health conditions, stressful life events, and social interactions. Modifiable correlates were discussed as potential targets for designing anxiety interventions for adults with ID. Conclusion: Despite the increased recognition of the mental health needs of individuals with ID in recent years, this review highlighted a dearth of research investigating the risk factors of anxiety among this population.

Objectives: To characterise the changes at work experienced by psychologists working with people with intellectual disabilities during the pandemic and whether these changes, stressors and aspects of working life were associated with mental wellbeing and occupational stress. Methods: Ninety-seven psychologists completed an online survey. Free text comments were analysed using thematic analysis and triangulated with our quantitative findings. Results: Occupational stress, learning new roles, demands at home, and changes due to COVID-19 were associated with poorer mental wellbeing, while uncertainty about the role, a shortage of personal protective equipment, and poorer mental wellbeing were associated with occupational stress. Two main themes emerged during the thematic analysis: being human and being an employee, and triangulation revealed agreement. Conclusions: The wellbeing and occupational stress of psychologists working with people with intellectual disabilities have been affected during the pandemic. It is of note that almost a quarter of our sample reported having been redeployed.

Background and aims: Although social resources and self-esteem are well-known predictors of subjective well-being in the general population, the relations among these factors have not yet been investigated in autism spectrum disorder (ASD). The present preliminary study sought to compare the levels of life satisfaction, self-esteem and perceived social support between adults with ASD and typically developing volunteers (TYP). It also examined whether self-esteem would moderate the effect of perceived social support on life satisfaction in adults with ASD. Methods: Fifty-seven adults with ASD without intellectual disability and 60 age-matched TYP in the United Kingdom (UK) completed self-reported measures of perceived social support, global self-esteem, and life satisfaction. Results: Results indicated that adults with ASD reported significantly lower levels of life satisfaction and self-esteem (but not social support) than TYP. Hierarchical regressions revealed that both social support and self-esteem were significant predictors of life satisfaction in adults with ASD. Self-esteem buffered the effect of perceived social support on life satisfaction. Conclusions: This study corroborated a growing body of evidence that suggests that adults with ASD report lower levels of self-esteem and life satisfaction than TYP. In addition, it reported for the first time that global self-esteem influences the association between social support and life satisfaction in adults with ASD. Implications: The present findings suggest that interventions aimed at enhancing self-esteem and cultivating social relationships could be important areas for intervention to improve the well-being of adults with ASD.

In 2021, York St John University and Mind the Gap collaborated to validate a Certificate in Higher Education (Cert HE) in the Performing Arts for learning disabled and autistic adults. This article presents context surrounding inclusive education, identifying the histories of ableism within assessment processes. We then discuss how we worked in consultation with learning disabled students to develop assessment criteria and processes that used language from the students as core definitions. We argue that through establishing inclusive arts education, recognised at degree-level, we can begin the process of enabling greater representation of learning disabled practitioners in the arts.

Background: Mental capacity legislation in the UK is designed to safeguard the rights of people who may need support, or may be unable, to make autonomous decisions. Very limited evidence has been published about the impact of the COVID-19 pandemic on the application of mental capacity legislation and, to our knowledge, none on the ability of speech and language therapists (SLTs) to support people with communication disabilities to engage in decision-making. Aims: To describe how UK SLTs supported people with communication disabilities to make decisions and participate in mental capacity assessments, best interests decision-making and advance care planning during the COVID-19 pandemic. Methods & Procedures: This descriptive, cross-sectional study used an online survey to collect quantitative and qualitative data about SLTs' practice experiences between August and November 2020. SLTs working with a range of adult clinical populations in different care settings were sampled purposively from all UK jurisdictions. Participants were recruited through professional networks and social media. Quantitative data were summarized using descriptive statistics. Qualitative data were analysed thematically. Outcomes & Results: Data were collected from 107 SLTs working in a range of settings across all four UK nations. The sample included SLTs working with people with neurological conditions, learning disabilities, mental health conditions and acute confusion. The need for SLT support appeared to increase during the pandemic. Most respondents were still able to offer support; however, the amount and nature of support varied. Quality of support was impacted by adjustments associated with social distancing and infection control restrictions. Personal protective equipment (PPE) was identified as a barrier to communication. Indirect working methods (e.g., telehealth) were inaccessible to some people with communication disabilities. Most respondents felt confident that legal requirements were upheld, but suggested this group was less able to engage in decision-making and had reduced access to support to manage their own health conditions. Conclusions & Implications: Some SLT services were limited in their ability to meet the decision-making support needs of people with communication disabilities during the COVID-19 pandemic due to structural and systemic barriers. This suggests that existing inequities in the provision of care for people with communication disabilities in the UK were amplified during the pandemic.

Aim: This article explores ways of maximising engagement of intellectual disability staff as research participants, research advisers and research implementers. Method: The authors describe and reflect on a three-phased strategy in recruiting front-line staff (n = 690) working for intellectual disability service providers (n = 25) to participate in a UK-wide anonymous online survey about death, dying and bereavement. Results: Important elements in engaging participants were: involving stakeholders at all stages of the research process, which includes: building relationships with participating organisations; enlisting organisational management support at all levels; an attractive and well laid-out collection tool; a well-structured recruitment strategy; time and flexibility; and a varied and targeted dissemination strategy. However, the recruitment method had limitations, in particular around representativeness, bias and generalisability. Conclusions: Staff in intellectual disability services can be enthusiastic and invaluable research participants. Active engagement between researchers, participating organisations and stakeholder groups is key to ensuring involvement of intellectual disability staff with research.

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.

This article evaluates the effectiveness of a multidisciplinary intensive community support service, using positive behavioural support (PBS) as a core intervention model to reduce behaviours of concern and to improve the quality of life and occupational involvement of individuals with a learning disability who present with behaviours that challenge. The service used outcome measures to evaluate the effectiveness of the PBS model. The study looks at pre- and post-outcome measures which showed a significant improvement in behaviour, quality of life and occupational outcomes for individuals with a learning disability presenting with complex behaviours of concern. This study contributes to the growing evidence base for PBS being delivered by specialist community learning disability teams.

This study evaluates the implementation of Safewards on an assessment and treatment unit (ATU) for people with an intellectual disability. There are no previous studies evaluating this model in this context and previous research has focused largely on acute mental health services. The 'Patient-Staff Conflict Shift Report' was used at baseline for 1 month and 1 year later, after all the interventions had been implemented, to evaluate the impact of Safewards. Significant reductions were found in conflict and containment measures used within the service after the implementation of Safewards. Staff who led on the interventions were also asked to give feedback on their experiences, the challenges they faced and how they would like to move forward. Safewards was generally seen as a positive approach by the team. Limitations of this study are highlighted and suggestions for future research are made.

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.

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.

Background: This is the second of two papers describing a case study of two young men with complex learning disabilities. They presented with severe trauma-related mental distress following alleged sexual, emotional and physical abuse. This paper concerns the psychological intervention and support provided for them and their families over a period of 2 years. There is a lack of research, guidance and evaluated therapeutic models for the assessment and treatment of people with complex learning and communication needs following abuse. Methods: In this case, therapeutic interventions were modified from systemic and narrative therapies and interpersonal psychotherapy. Creative techniques included acting, drawing and walks to develop a therapeutic relationship, to experience affect in a contained and safe way and to support the development of coherent narratives. Results: Recovery moved through stages of remembering and recounting, understanding and assimilating and improved mental well-being and coping strategies. Conclusions: Modified models of therapy proved effective and further research recommended. The personal strengths and family support of the men were critical in progressing recovery. [For Part 1, see EJ1294207.]

Background: It has been suggested that COVID-19 and the associated restrictions are likely to have a negative impact on the provision of positive behavioural support (PBS) to people with an intellectual disability. Methods: Fifty-eight staff, who had recently completed an accredited positive behavioural support (PBS) programme, responded to an online questionnaire, which asked them to rate the impact of COVID-19 on factors related to PBS. Results: Participants reported a neutral or somewhat positive impact on all the areas measured, with the exception of the activities and quality of life of those they supported, which were somewhat negatively affected. The participants rated the learning from their PBS programme as helping them cope with COVID-19 to some extent. Examples of positive and negative effects and ways in which PBS helped staff to cope are presented. Conclusions: Many staff developed creative solutions that allowed them to provide PBS despite the COVID-19 restrictions. PBS learning appeared to help staff cope with the negative impact of the restrictions.

Two young men disclosed emotional, sexual and physical abuse while attending college and living with Shared Lives carers in the UK. This paper provides a narrative account of the period when the two men were exposed to the abuse, the disclosures, the investigation and the legal and safeguarding investigation outcomes. A second paper describes the therapeutic response and outcomes for the men. A review of the literature on abuse and learning disabilities highlights the difficulties in conducting research in this area. Authors find significant barriers exist to disclosing abuse and to being believed. Prosecutions are rare despite evidence that abuse may be widespread towards people with learning disabilities. This paper considers the narrative experience of the two young men, the barriers they faced to being heard and believed and how their personal accounts were discounted and eventually lost to the investigation. Lessons for practice are considered for learning disability mental health and social care professionals, education, police and legal services. Further research suggestions are made. [For Part 2, see EJ1294209.]

Attachment difficulties are associated with a range of adverse outcomes in mental health, and people with intellectual disabilities (IDs) may be at greater risk of experiencing difficulties in their attachment relationships. This review critically evaluated recent research measuring the prevalence of attachment difficulties in people with ID. Eight studies met the inclusion criteria, and a higher prevalence of insecure and disorganized attachment classifications, and symptoms of attachment disorder, was found across a number of subgroups of people with diagnoses of ID. However, the validity and reliability of measures of attachment have not been empirically established in this population, and control groups were not always appropriate. These findings indicate the need to (1) develop reliable and standardized assessments of attachment for people with ID and (2) evaluate the efficacy of attachment-based interventions in relation to reducing psychological distress, mental health problems and expression of behaviours experienced by others as challenging.

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.

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.

Background: Adopting a vegetarian diet is becoming increasingly popular within the UK, for reasons such as perceived health benefits and concerns over animal welfare. The study explores attitudes towards vegetarianism/veganism among adults with learning disabilities. Materials and Methods: Semi-structured interviews were conducted with eight people with learning disabilities who did not eat meat across the UK. Results: Participants who adopted a meat-free diet did so predominantly for animal welfare. Participants cared passionately about the welfare of animals but were reluctant to advocate their lifestyle to other people with learning disabilities, where they are in the minority for their dietary choices. Participants felt most people with learning disabilities were not made aware of the reality that animals are killed for food and that they should have accessible information to make an informed choice about whether to eat meat. Conclusions: Holding the identity as a vegetarian could potentially facilitate integration into mainstream organisations where people hold similar ethical beliefs; however, this is unlikely unless organisations increase their inclusivity such as providing accessible information.

Background: Transition to adulthood is an important time for young people and may be a particularly challenging time for people with intellectual disabilities. However, there has been little research in the UK regarding the experiences of parents who have son or daughter with an intellectual disability transitioning to adulthood. Method: The study used interpretive phenomenological analysis to explore the lived experiences of ten parents who had a son or daughter (aged 18-25 years) with an intellectual disability. Half of the sample also had a diagnosis of autism. Results: Three superordinate themes were generated from the data: (a) Transition: The Good, the Bad and Unknown; (b) Striving for Independence; and (c) Supporting the Supporters. Parents experienced many difficulties and uncertainty related to their role, their son/daughter's independence, navigating services for their son/daughter and accessing support for themselves. Conclusions: Increased collaboration and consistency from statutory services is required in addition to providing emotional support to parents and facilitating parent support networks.

The lack of systematic training available for young dancers with disabilities has previously presented a barrier for those wishing to develop their skills and pursue a career in dance. Recently, a number of initiatives have launched to help bridge this gap; however, currently no established assessment measures exist that are sensitive to the needs of young dancers with disabilities while providing evidence of their competencies. The aim of this study was to develop a performance evaluation tool to allow tracking of progress in technique and performance skills in young dancers with a range of physical and/or intellectual disabilities. The tool allows scoring on a Likert-type scale on eleven criteria, including control of movement, coordination, spatial awareness, timing and rhythm, and surface or partner work. Six dancers were filmed during classes to allow retrospective evaluation of their performance by four judges. Intra-Class Correlation Coefficients (ICCs) for inter-rater and test-retest reliability demonstrated good reliability. Inconsistencies in scoring reduced and ICCs strengthened when trial one was removed from analysis; therefore, a familiarisation trial is recommended for future uses of this tool. Overall, this appears to be a reliable tool for evaluating elements of dance technique and performance in young dancers with disabilities.

Background: There is growing interest in the application of dialectical behaviour therapy (DBT) for individuals with intellectual disability (ID) and recent qualitative studies have explored their experiences of DBT in inpatient and forensic settings. This article aimed to explore experiences of DBT in a community setting for people with ID. Method: Eleven individuals recruited from two NHS Trusts were interviewed about their experiences of DBT. Interview data was analysed using interpretative phenomenological analysis (IPA). Results: Four superordinate themes and eight subordinate themes emerged from the data. The first superordinate theme 'experience of power' captured participants experience of power within DBT. The second theme 'differences in therapy contexts' highlighted how participants had made sense of different therapeutic contexts. The third theme 'the experience of a positive therapeutic relationship' focused on the qualities and attitudes of the therapist. The fourth theme 'a new way of being' described the impact DBT had on participants' everyday lives and the shift in their sense of self. Discussion: This study provides insight into the lived experiences of people with ID receiving DBT. Therapeutic processes including the interplay between factors unique to DBT and features common across therapies are discussed.