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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., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Aim: To explore the factors influencing the implementation of reasonable adjustments in hospitals for people with intellectual disability: using a realist lens., Design: A qualitative study using a realist lens., Methods: Data collection involved one focus group interview and three semi-structured interviews with healthcare professionals working in hospital or community settings in September 2023. Data were analysed using qualitative content analysis and findings were mapped to the Context and Implementation of Complex Interventions (CICI) framework across the dimension's context, implementation and setting., Results: Healthcare professionals support the provision of reasonable adjustments in acute hospitals as a person-centred approach to caring for people with intellectual disability. While reasonable adjustments are evident in practice, they are mostly individual-level cases with little evidence of strategic system-level implementation. The factors influencing the implementation of reasonable adjustments in practice were conceptualised using the CICI framework. Context factors spanned the domains of epidemiological (e.g., ageing population), socio-cultural (e.g., historical healthcare), political (e.g., lack of integrated care pathways) and ethical (e.g., provision of person-centred care). Implementation factors spanned the domains of strategies (e.g., leadership strategies), agents (e.g., liaison and advocacy roles) and outcomes (e.g., individual-level reasonable adjustments). The setting for the complex intervention was the acute hospital. System-level indicators for successful implementation include intellectual disability specific policies/procedures for integrated care pathways, education and awareness training for hospital staff, and leadership strategies such as the development of liaison nursing roles and the appropriate allocation of physical and human resources., Conclusion: A radical change is needed where implementation of reasonable adjustments in acute hospitals are broadened beyond isolated individual-level cases to system-level healthcare. This research highlights the importance of exploring the integrated dimensions of context, implementation and setting in complex interventions such as reasonable adjustments and sets foundation for further implementation research in this area., Impact: Reasonable adjustments at the system-level within acute hospitals would promote person-centred care and help address the inequities and health disparities experienced by people with intellectual disability. This research uses a realist lens to explore the factors influencing the implementation of reasonable adjustments in acute hospitals for people with intellectual disability. The factors influencing the implementation of reasonable adjustments in practice were conceptualised using the CICI framework across the dimensions of context (domains epidemiological, socio-cultural, political and ethical), implementation (domains strategies, agents and outcomes) and setting. System-level indicators for successful implementation include intellectual disability specific policies/procedures for integrated care pathways, education and awareness training for hospital staff, and leadership strategies such as the development of liaison nursing roles and the appropriate allocation of physical and human resources. This research highlights the importance of exploring the integrated dimensions of context, implementation and setting of complex interventions such as reasonable adjustments and sets a foundation for further implementation research in this area., Reporting Method: This research adhered to the Equator research reporting guideline: standards for reporting qualitative research., Patient or Public Contribution: A parent of a child with intellectual disability was involved in the conduct of this research, specifically in the design, data collection and preparation of the manuscript., (© 2024 The Author(s). Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Background: Children with intellectual disability are less physically active and more sedentary than typically developing peers. To date no studies have tested the feasibility of a school-based walking intervention for children with Intellectual Disability., Method: A clustered randomised controlled trial (cRCT), with an embedded process evaluation, was used to test the feasibility of a school-based walking intervention. Eight schools (n = 161 pupils aged 9-13 years) were randomised into either an intervention arm or an 'exercise as usual' arm. Measures included physical activity, physical fitness and emotional wellbeing. Baseline and 3-month follow-up data were collected., Results: The 'Walk Buds' intervention was found to be acceptable to teaching staff and pupils, with an uptake rate of the walking sessions offered of 84%., Conclusion: A number of challenges were experienced, relating to the COVID-19 pandemic, and difficulties collecting accelerometer data. Barriers, facilitators and required changes identified through the mixed methods process evaluation are discussed., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Paediatric convulsive status epilepticus is the most common neurological emergency presenting to emergency departments. Risks of resultant neurological morbidity and mortality increase with seizure duration. If the seizure fails to stop within defined time-windows, standard care follows an algorithm of stepwise escalation to more intensive treatments, ultimately resorting to induction of general anaesthesia and ventilation. Additionally, ventilatory support may also be required to treat respiratory depression, a common unwanted effect of treatment. There is strong pre-clinical evidence that pH (acid-base balance) is an important determinant of seizure commencement and cessation, with seizures tending to start under alkaline conditions and terminate under acidic conditions. These mechanisms may be particularly important in febrile status epilepticus: prolonged fever-related seizures which predominantly affect very young children. This trial will assess whether imposition of mild respiratory acidosis by manipulation of inhaled medical gas improves response rates to first-line medical treatment., Methods: A double-blind, placebo-controlled trial of pH manipulation as an adjunct to standard medical treatment of convulsive status epilepticus in children. The control arm receives standard medical management whilst inhaling 100% oxygen; the active arm receives standard medical management whilst inhaling a commercially available mixture of 95% oxygen, 5% carbon dioxide known as 'carbogen'. Due to the urgent need to treat the seizure, deferred consent is used. The primary outcome is success of first-line treatment in seizure cessation. Planned subgroup analyses will be undertaken for febrile and non-febrile seizures. Secondary outcomes include rates of induction of general anaesthesia, admission to intensive care, adverse events, and 30-day mortality., Discussion: If safe and effective 95% oxygen, 5% carbon dioxide may be an important adjunct in the management of convulsive status epilepticus with potential for pre-hospital use by paramedics, families, and school staff., Trial Registration: EudraCT: 2021-005367-49. CTA: 17136/0300/001., Isrctn: 52731862. Registered on July 2022., (© 2024. The Author(s).)

Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article., (© The Author(s) 2022.)

This article explores the experiences of the use of the Regional Health and Social Care Hospital Passport (Regional Hospital Passport) in Northern Ireland from the perspectives of adults with intellectual disabilities, family carers and health professionals. From semi-structured interviews three themes emerged: usefulness; facilitators; and barriers to the use of the Regional Hospital Passport . There were clear benefits of the Hospital Passport when used across hospital services and clinical practice settings such as dental and General Practices. There was participant agreement that communication and the person-centred care experiences were enhanced. Findings suggest that providers of health and social care services need to take greater responsibility and accountability for ensuring Regional Hospital Passports are promoted and used across all settings. There is a requirement to develop the wider use and uptake of hospital passports to support adults with intellectual disabilities, with potential for use with other patient groups., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: Speech and language therapists (SLTs) worldwide report challenges with providing recommended, evidence-based intervention intensity for children with speech sound disorder (SSD). Challenges such as service constraints and/or family contexts impact on access to optimal therapy intensity. Existing research indicates that empowering and training parents to deliver intervention at home, alongside SLT support, offers one possible solution to increasing the intensity of intervention children with SSD receive. Digital health could increase accessibility to intensive home practice and help sustain engagement with therapy activities. Further exploration is needed around what makes parent-implemented interventions for children with SSD effective, for who and in which situations. This paper outlines the protocol for a realist review which aims to explore the active ingredients and contextual factors of effective digital parent-led interventions., Methods and Analysis: A realist review will explore the research question, following six stages. The scope of the review will be determined, and initial programme theories will be developed about what works in digital parent-implemented interventions for SSD, for whom, how, why and in what circumstances. Relevant secondary data, identified through a formal search strategy, will be selected, appraised, analysed and synthesised using realist principles to test and further refine the initial programme theories. This process will develop refined underpinning explanatory theories which capture the interaction between contexts, mechanisms and outcomes of the intervention. An expert steering group will provide insight to inform explanatory theories, searches, and dissemination., Ethics and Dissemination: Ethical approval is not required for this review. The refined programme theories from the review will inform the next stages of a wider study. A subsequent realist evaluation will test and further refine theories with key stakeholders. Following this, the underpinning programme theory will be used to coproduce a digital tool, to support parents to deliver home intervention alongside SLT support., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

Success of psychosocial interventions in reducing aggressive challenging behaviour is likely to be related not only to mechanistic aspects but also to therapeutic and system factors. The study aims to examine the facilitators and barriers that influence whether psychosocial interventions for aggressive challenging behaviour in adults with intellectual disabilities lead to positive change. We conducted 42 semi-structured interviews with adults with intellectual disabilities who display aggressive challenging behaviour, family/paid carers, and professionals engaged in or delivering a psychosocial intervention across the UK. Data were analysed thematically using a framework approach. Stakeholders considered therapeutic and supportive relationships and personalised care as facilitating factors in addressing aggressive challenging behaviour. The operational structure of community intellectual disability services and conflicting expectations of professionals and carers were the main contextual barriers that impeded the implementation of psychosocial interventions in adults with intellectual disabilities. Findings highlight the valued components that maximise positive change in adults with intellectual disabilities who display aggressive challenging behaviour. Several operational adjustments including referral criteria, roles of professionals and workforce issues need to be addressed in services to maximise the implementation of psychosocial interventions leading to reduction in aggressive challenging behaviour in this population., Competing Interests: No competing interests were disclosed., (Copyright: © 2023 Kouroupa A et al.)

Background: Adults with intellectual disabilities often display behaviour that challenges that is a result of biological differences, psychological challenges, and lack of appropriate social support. Intensive Support Teams (IST) are recommended to support the care needs of this group and avoid hospitalisation. However, little attention has been paid to the perspectives of stakeholders who manage, work in, or use ISTs., Method: Interviews and focus groups were conducted with 50 stakeholders (IST service managers and professionals, adults with intellectual disabilities, and family and paid carers) of ISTs. Services operated according to one of two service models previously identified in ISTs in England (enhanced or independent)., Results: Thematic analysis identified accessible and flexible support, individualised care, and the involvement of carers and other relevant agencies in management plans and reviews as features of good IST care highlighted by all stakeholder groups. IST managers and professionals described the key challenges of current IST provision as unclear referral criteria, limited interfaces with other local services, and perceived threats associated with funding and staff retention. Findings were similar between the two IST models., Conclusions: ISTs are able to offer care and specialist support that is valued by families, service users and other care providers. However, they face several operational challenges that should be addressed if ISTs are to reach their potential along with community intellectual disability services in supporting adults with intellectual disabilities who display behaviour that challenges in the community., (© 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Intensive support teams (ISTs) are recommended for individuals with intellectual disabilities who display behaviours that challenge. However, there is currently little evidence about the clinical and cost-effectiveness of IST models operating in England., Aims: To investigate the clinical and cost-effectiveness of IST models., Method: We carried out a cohort study to evaluate the clinical and cost-effectiveness of two previously identified IST models (independent and enhanced) in England. Adult participants ( n = 226) from 21 ISTs (ten independent and 11 enhanced) were enrolled. The primary outcome was change in challenging behaviour between baseline and 9 months as measured by the Aberrant Behaviour Checklist-Community version 2., Results: We found no statistically significant differences between models for the primary outcome (adjusted β = 4.27; 95% CI -6.34 to 14.87; P = 0.430) or any secondary outcomes. Quality-adjusted life-years (0.0158; 95% CI: -0.0088 to 0.0508) and costs (£3409.95; 95% CI -£9957.92 to £4039.89) of the two models were comparable., Conclusions: The study provides evidence that both models were associated with clinical improvement for similar costs at follow-up. We recommend that the choice of service model should rest with local services. Further research should investigate the critical components of IST care to inform the development of fidelity criteria, and policy makers should consider whether roll out of such teams should be mandated.

Objectives: Approximately 10% of people with intellectual disability display aggressive challenging behaviour, usually due to unmet needs. There are a variety of interventions available, yet a scarcity of understanding about what mechanisms contribute to successful interventions. We explored how complex interventions for aggressive challenging behaviour work in practice and what works for whom by developing programme theories through contexts-mechanism-outcome configurations., Methods: This review followed modified rapid realist review methodology and RAMESES-II standards. Eligible papers reported on a range of population groups (intellectual disability, mental health, dementia, young people and adults) and settings (community and inpatient) to broaden the scope and available data for review., Results: Five databases and grey literature were searched and a total of 59 studies were included. We developed three overarching domains comprising of 11 contexts-mechanism-outcome configurations; 1. Working with the person displaying aggressive challenging behaviour, 2. Relationships and team focused approaches and 3. Sustaining and embedding facilitating factors at team and systems levels. Mechanisms underlying the successful application of interventions included improving understanding, addressing unmet need, developing positive skills, enhancing carer compassion, and boosting staff self-efficacy and motivation., Conclusion: The review emphasises how interventions for aggressive challenging behaviour should be personalised and tailored to suit individual needs. Effective communication and trusting relationships between service users, carers, professionals, and within staff teams is essential to facilitate effective intervention delivery. Carer inclusion and service level buy-in supports the attainment of desired outcomes. Implications for policy, clinical practice and future directions are discussed., Prospero Registration Number: CRD42020203055., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Royston et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Dysphagia can have serious health implications including choking and respiratory infection leading to poorer quality of life. People with intellectual disabilities are at higher risk of dysphagia related health complications and early death. Robust dysphagia screening tools are vital for this population., Method: A scoping review and appraisal of the evidence for dysphagia and feeding screening tools for use with people with intellectual disabilities was undertaken., Results: Seven studies (using six screening tools) met the review inclusion criteria. Mostly studies were limited by no defined dysphagia criteria, no verification of tools with a gold reference standard (e.g., videofluoroscopic examination) and lack of participant diversity (small samples, narrow age range, severity of intellectual disability or limited settings)., Conclusions: There is urgent need for development and rigorous appraisal of existing dysphagia screening tools to meet the needs of a wider range of people with intellectual disabilities (particularly mild-to-moderate severity) and in wider settings., (© 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Taking a trauma informed care approach has demonstrated positive outcomes for services for people in the general population. Given the increased vulnerability to psychological trauma for adults with an intellectual disability, this study explores what residential staff know about trauma and trauma informed care., Methods: Thirty-two staffs representing three staff groups: direct care staff; managers; and specialist practitioners, were interviewed using semi-structured interviews, which were analysed following a structured framework., Findings: Each staff group held different perspectives in their knowledge of trauma and trauma informed care. Limitations were noted in staffs' knowledge of trauma, implementation of evidence-based supports, and access to specialist services for adults with an intellectual disability. All participants highlighted their training needs regarding trauma., Conclusion: Increased training on recognising and responding to trauma is needed among community staff supporting those with a trauma history if organisations are to move towards trauma informed care., (© 2022 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Young people with intellectual disabilities are traditionally less physically fit compared to their non-disabled peers. While the health benefits of increasing physical activity are evident, there remains a lack of evidence on how to increase physical activity and reduce sedentary behaviour in young people with intellectual disabilities. Walking interventions, including those delivered in school settings, have been found to significantly increase physical activity levels of young people without disabilities. However, to date there has been a paucity of studies testing walking interventions for young people with intellectual disabilities in school settings. In an earlier study we developed the Walk Buds school-based walking programme for children with intellectual disability (aged 9-13 yrs), which incorporated a paired buddy component., Aim: We plan to conduct a clustered feasibility RCT that will enable us to examine the acceptability of the Walk Buds programme, randomisation, and outcome measures, check the fidelity programme delivery, and identify the facilitators and barriers to the implementation of the programme., Methods: This study is a two-arm, cRCT feasibility trial where eight schools will be randomised into either an intervention arm (Walk Buds) or an 'exercise as usual' arm. We are aiming to recruit between 130 and 160 young people with intellectual disabilities. Outcome measures will be recorded at baseline and three-months post-intervention. A process evaluation will explore the factors that could impact on the internal and external validity of a future cRCT and the intervention's logic model., Discussion: Walk Buds is the first theoretically underpinned, peer-led, multi-component, manualised school-based walking programme that aims to increase physical activity, physical fitness, and emotional wellbeing in 9-13 yr old children with intellectual disabilities., (Crown Copyright © 2022. Published by Elsevier Inc. All rights reserved.)

Aim: To identify, and reach consensus on, curricular-content and delivery methods, as well as ways to maximize the impact of intellectual disability awareness training programmes in acute hospital settings., Background: With the continuing evidence of avoidable deaths and unwarranted variations in the quality of care to people with an intellectual disability in acute hospitals, it could be purported that current training provided to hospital staff appears to be making a minimal difference in the care provided to this population., Design: A two-round modified Delphi survey was conducted between June 2020-January 2021., Methods: International experts from primary healthcare and hospital settings, and intellectual disability health fields participated in the survey. Initial curricular-content items were developed from the literature, and based on the combined clinical and academic experience base of the authors. Items were evaluated in terms of agreement/consensus, importance and stability of responses. There were 57 expert responses in Round 1 and 45 in Round 2., Results: The consensus was reached with regard to 55 of 65 curricular-content indicators relating to Aims, Design, Content and Delivery. Ten curricular-content indicators failed to be agreed on relating to the mode of training delivery. With regard to systems-related impact indicators, 28 out of 31 reached consensus. The expert panel identified and agreed on seven system barriers that could obstruct the successful implementation of the awareness training programmes in acute hospital settings., Conclusions: This is the first international Delphi survey to agree on curricular-content and identify systems-related facilitators for intellectual disability awareness training. Potential system barriers have been highlighted which could be addressed by systemic improvement. Implications for developing, and robustly testing the efficacy of, intellectual disability awareness training programmes are discussed, as are the implications for other cognitively impaired populations., Impact: In order to maximize the impact, investment in acute hospital staff education will need to be accompanied by wider changes to systems and structures concerning the governance of service provision for people with an intellectual disability., (© 2021 John Wiley & Sons Ltd.)

Objective: Following a review of the existing body of literature, this study aimed to explore the need for a breast cancer awareness intervention specifically targeted at women with mild/moderate levels of intellectual disability (ID) and provide perspectives on the preferred processes and content underpinning an intervention., Methods: A qualitative, descriptive design using semi-structured, individual (n = 5) and focus group (n = 5) interviews were used to engage with a non-probability, purposive sample of key stakeholders (n = 25) including women with mild/moderate levels of ID, caregivers and healthcare professionals. Data were analysed using qualitative content analysis., Results: Findings highlighted that an educational intervention should focus on breast awareness as opposed to breast cancer awareness. Additionally, findings identified that a combined breast awareness and healthy living intervention could be effective. However, the intervention needs to have a multimodal, hands-on, person-centred approach to learning which is underpinned by theory. Furthermore, integrating the caregivers and healthcare professionals into the intervention is recommended., Conclusion: Findings from this study provide a foundation for developing and implementing a theoretically underpinned, multimodal, breast awareness and healthy living educational intervention for women with mild/moderate levels of ID., (© 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.)

Background: The minimal clinically important difference (MCID) is relevant in the estimation of improvement in a patient outcome., Aim: To determine the MCID on the Aberrant Behaviour Checklist-Irritability (ABC-I), widely used to measure the effects of intervention for aggressive challenging behaviour in people with intellectual disabilities., Method and Procedures: We utilised distribution and anchor based methods to estimate the ABC-I MCID. We extracted data from 15 randomised controlled trials (RCTs) for meta-analysis. We conducted three online workshops with family carers and professionals to consider meaningful change in case vignettes of increasing severity of aggressive challenging behaviour., Outcomes and Results: We did not find overlap in the range of values between the two approaches. The meta-analysis indicated a range of MCID on the ABC-I (0.05, 4.94) whilst the anchor-based estimation indicated a larger change (6.6, 16.6)., Conclusions and Implications: The MCID is essential in interpreting the results from intervention studies. The present work was undertaken as part of a wider programme on the development and testing of a psychosocial intervention for aggressive challenging behaviour, and it is of interest to researchers in justifying how they choose and determine the MCID on the outcome of interest., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

Although a negative association between socio-economic inequalities and health has been established, there is a dearth of robust longitudinal studies examining this relationship in adolescents. This study used a large, nationally representative longitudinal data set to investigate the association between socio-economic inequality, subjective health status and disabilities among young people in Northern Ireland over a ten-year period. Data were from the Northern Ireland Longitudinal Study, a census-based record linkage study (N = 46,535). Logistic regression models were estimated in which health and disability variables from the 2011 census were predicted by household deprivation in education, housing quality, housing tenure and employment from the 2001 census. Models were adjusted for health and disability status in 2001. Deprivation in employment, housing tenure and coming from a single-parent household in 2001 independently predicted poorer subjective health and disability status ten years later [ORs = 1.28-1.93]. Deprivation in education in 2001 was also associated with increased risk of disability in 2011 [OR = 1.15; 95% CI = 1.06-1.25]. These results show that there is a need to dedicate more resources and support for economically disadvantaged children and young people in Northern Ireland, where child health outcomes are poorer than in the rest of the UK.

Background: Adolescents with intellectual disabilities are insufficiently physically active. Where interventions have been developed and delivered, these have had limited effectiveness, and often lack a theoretical underpinning., Aim: Through application of the COM-B model, our aim is to explore the factors influencing adolescent physical activity within schools., Methods: A qualitative methodology, using focus groups with students who have mild/moderate intellectual disabilities, their parents'/carers' and teachers'. The COM-B model provided the lens through which the data were collected and analysed., Results: We identified of a range of individual, interpersonal, and environmental factors influencing physical activity, across all six COM-B constructs, within the context of the 'school-system'., Conclusion: This is the first study to use the COM-B model to explore school-based physical activity behaviour, for adolescents with intellectual disabilities. Identification of such physical activity behavioural determinants can support the development of effective and sustainable interventions., (© 2022 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Although the research base on mental health in intellectual disabilities is advancing, there are long-standing barriers that hinder successful completion of funded studies. A variety of stakeholders hold the key to mitigating the challenges and arriving at sustainable solutions that involve researchers, experts by experience, clinicians and many others in the research pathway. Lessons learned during the COVID-19 pandemic can also contribute to improvements in the conduct of research in the medium to long term. People with an intellectual disability and mental health conditions deserve high standards of evidence-based care.

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.

Introduction: In one-third of all abdominal aortic aneurysms (AAAs), the aneurysm neck is short (juxtarenal) or shows other adverse anatomical features rendering operations more complex, hazardous and expensive. Surgical options include open surgical repair and endovascular aneurysm repair (EVAR) techniques including fenestrated EVAR, EVAR with adjuncts (chimneys/endoanchors) and off-label standard EVAR. The aim of the UK COMPlex AneurySm Study (UK-COMPASS) is to answer the research question identified by the National Institute for Health Research Health Technology Assessment (NIHR HTA) Programme: 'What is the clinical and cost-effectiveness of strategies for the management of juxtarenal AAA, including fenestrated endovascular repair?', Methods and Analysis: UK-COMPASS is a cohort study comparing clinical and cost-effectiveness of different strategies used to manage complex AAAs with stratification of physiological fitness and anatomical complexity, with statistical correction for baseline risk and indication biases. There are two data streams. First, a stream of routinely collected data from Hospital Episode Statistics and National Vascular Registry (NVR). Preoperative CT scans of all patients who underwent elective AAA repair in England between 1 November 2017 and 31 October 2019 are subjected to Corelab analysis to accurately identify and include every complex aneurysm treated. Second, a site-reported data stream regarding quality of life and treatment costs from prospectively recruited patients across England. Site recruitment also includes patients with complex aneurysms larger than 55 mm diameter in whom an operation is deferred (medical management). The primary outcome measure is perioperative all-cause mortality. Follow-up will be to a median of 5 years., Ethics and Dissemination: The study has received full regulatory approvals from a Research Ethics Committee, the Confidentiality Advisory Group and the Health Research Authority. Data sharing agreements are in place with National Health Service Digital and the NVR. Dissemination will be via NIHR HTA reporting, peer-reviewed journals and conferences., Trial Registration Number: ISRCTN85731188., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.)

Background: Given the much greater COVID-19 mortality risk experienced by people with intellectual disabilities (ID), understanding the willingness of people with ID to take a COVID-19 vaccine is a major public health issue., Method: In December 2020 to February 2021, across the United Kingdom, 621 adults with ID were interviewed remotely and 348 family carers or support workers of adults with ID with greater needs completed an online survey, including a question on willingness to take a COVID-19 vaccine if offered., Results: Eighty-seven per cent of interviewees with ID were willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having already had a flu vaccine, gaining information about COVID-19 from television but not from social media, and knowing COVID-19 social restrictions rules. A percentage of 81.7% of surveyed carers of adults with ID with greater needs reported that the person would be willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having a health condition of concern in the context of COVID-19, having had a flu vaccine, being close to someone who had died due to COVID-19, and having shielded at some point during the pandemic., Conclusions: Reported willingness to take the COVID-19 vaccine is high among adults with ID in the United Kingdom, with factors associated with willingness having clear implications for public health policy and practice., (© 2021 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd.)

Adults with intellectual disabilities experience significant physical and mental health needs when compared to their typically developing peers. Previous research evidences that many people with intellectual disabilities have negative encounters within acute hospitals. The aim of this systematic review was to identify the specific views and experiences of adults with intellectual disabilities when accessing acute hospital services arising from the available literature. The review commenced in June 2019 and was updated in May 2020. A systematic search of five electronic databases including CINAHL Plus, MEDLINE, Web of Science, SCOPUS and PsycINFO was undertaken. Studies published from 2014, peer-reviewed, written in English and referred to adults with intellectual disabilities aged 18 plus and acute hospital settings were included. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and the Critical Appraisal Skills Programme quality assurance checklist were used to review all selected papers. Five studies from a total of 421 were deemed suitable for inclusion in the review as the voices of adults with intellectual disabilities were present. Poor communication from healthcare staff towards adults with intellectual disabilities emerged in four studies while the use of the hospital passport and the intellectual disability liaison nurse to significantly improve the hospital experience for adults with intellectual disabilities was identified in two of the studies. Following a systematic and thematic analysis of the studies, three main overarching themes emerged: communication; information sharing; and compassion and respect. Despite the national and international focus on improving healthcare for people with intellectual disabilities, this review highlights lack of communication, inadequate information sharing and issues related to compassionate care and respect. The review identifies the possibility that an increased use of hospital passports and an extension of the intellectual disability liaison nursing roles may enhance the hospital experience for people with intellectual disabilities., (© 2020 John Wiley & Sons Ltd.)

Background: People with an intellectual disability are more vulnerable to psychological trauma compared with the general population. The aim of this scoping review was to identify the current status of the literature on trauma that is specific to the experiences of adults with an intellectual disability, living in community settings., Methods: A scoping review was conducted using the Arksey and O'Malley (International Journal of Social Research Methodology, 2005, 8, 19) framework. Forty-one international papers were reviewed spanning 2000-2020, and their quality assessed using the MMAT., Findings: (1) Aggressive behaviours can be symptoms of trauma, (2) there are appropriate assessment tools for the impact of trauma, (3) evidence-based interventions for trauma may be effective, and (4) factors associated with disability can be experienced as traumatic., Conclusion: There is a growing body of literature highlighting assessment needs and potential interventions for people with an intellectual disability who have experienced psychological trauma. Further research is needed to develop trauma-informed pathways., (© 2021 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Globally, conducting randomised controlled trials can be a complex endeavour. The complexity increases when including participants with cognitive or intellectual disabilities. A fuller understanding of the barriers and challenges that can be expected in such trials may help researchers to make their trials more inclusive for people with disabilities., Method: Semi-structured interviews were conducted with twelve international trial experts., Results: Eight themes emerged relating to challenges linked to: 1) participant co-morbidities, 2) participant ability levels, 3) ethics and consent, 4) the RCT methodology, 5) gatekeeping, 6) staff turnover, 7) lack of technical understanding and 8) attitudes and perceptions., Conclusion: Conducting trials with cognitively disabled participants can pose unique challenges although many can be overcome with 'reasonable adjustments'. Challenges that are harder to overcome are attitudes and perceptions that people (professional staff, funding bodies, carers or fellow researchers) hold towards the utility of conducting trials with cognitively disabled populations., (© 2020 John Wiley & Sons Ltd.)

The use of psychotropic medication in children is increasing worldwide. Children with developmental disabilities seem to be prescribed these medications at a higher rate compared to their non-disabled peers. Little is known about prescribing in non-Western, middle-income studies. In Iran, the file records of 1133 children, aged 2 to 17 years, assessed as having autism spectrum disorder (ASD) or an intellectual disability (ID) in Tehran City and Province from 2005 to 2019 were collated, and information from parental reports of medications was extracted. Upwards of 80% of children with ASD and 56% of those with ID were prescribed a psychotropic medication with around one quarter in each group taking two or more medications. The rates were higher among male children showing difficult-to-manage behaviors such as hyperactivity, but less so for children of fathers with higher levels of education. The lack of alternative management strategies may be a significant driver for the use of psychotropic medications in Iran and other Low and Middle Income countries, despite their known side effects, and their failure to address the developmental needs of the children. Rather, multi-disciplinary, behavioral, therapeutic, and educational interventions are required, but these are not available widely in Iran, although a start has been made.

Purpose: The aim of this study was to explore the reasons behind speech-language pathologists' (SLPs') current clinical practices (intervention and intensity provision) for children (0-18 years) with phonological impairment., Method: Three focus groups each with five SLPs and six 1:1 interviews with SLP managers from one region of the UK ( n  = 21) were carried out. A thematic analysis was undertaken., Result: SLPs often used an eclectic mix of familiar approaches with easily-accessible therapy materials. SLPs only reported deviating from their core approach if the child did not progress in therapy. Mixed responses were gathered on the perceived feasibility of transferring evidence-based intervention intensities into clinical practice. The importance of parents to increase intensity provision at home was noted. Barriers to SLPs' evidence-based decision-making included: time; confidence levels; service-related restrictions and; difficulty replicating research in practice. Having peer support and access to decision-making pathways and manualised intervention protocols were considered ways to overcome these barriers., Conclusion: There is a research-practice gap in which SLPs' current practices are driven by organisational factors, their own preferences and child-specific factors. To narrow this gap, SLPs suggested the development of time-saving, evidence-based tools.

Introduction: Approximately 17% of adults with intellectual disabilities (ID) living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy inpatient stays in England. We have identified two models of ISTs (model 1: enhanced provision and model 2: independent provision). This study aims to investigate the clinical and cost-effectiveness of the two models of ISTs., Methods and Analysis: A cohort of 226 adults with ID displaying behaviour that challenges who receive support from ISTs from each model will be recruited and assessed at baseline and 9 months later to compare the clinical and cost-effectiveness between models. The primary outcome is reduction in challenging behaviour measured by the Aberrant Behaviour Checklist-Community (ABC-C). The mean difference in change in ABC score between the two IST models will be estimated from a multilevel linear regression model. Secondary outcomes include mental health status, clinical risk, quality of life, health-related quality of life, level of functioning and service use. We will undertake a cost-effectiveness analysis taking both a health and social care and wider societal perspective. Semistructured interviews will be conducted with multiple stakeholders (ie, service users, paid/family carers, IST managers/staff) to investigate the experience of IST care as well as an online survey of referrers to capture their contact with the teams., Ethics and Dissemination: The study was approved by the London-Bromley Research Ethics Committee (REC reference: 18/LO/0890). Informed consent will be obtained from the person with ID, or a family/nominated consultee for those lacking capacity and from his/her caregivers. The findings of the study will be disseminated to academic audiences, professionals, experts by experience and arm's-length bodies and policymakers via publications, seminars and digital platforms., Trial Registration Number: ClinicalTrials.gov Registry (NCT03586375)., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.)

Introduction: Incidence rates for developing breast cancer are similar for women regardless of intellectual ability. However, women with an intellectual disability present with advanced breast cancers, which often have a poor prognosis., Method: A structured narrative review of the literature was performed to explore the concepts of breast awareness and breast cancer awareness and subsequently, identify barriers to breast cancer awareness encountered by women with an intellectual disability., Results: A total of 22 studies involving people with varying levels of intellectual disability informed this review. The barriers to breast cancer awareness encountered by women with an intellectual disability include: lack of their understanding, the role of the carer and literacy issues., Conclusion: Identifying the barriers to breast cancer awareness for women with an intellectual disability will help to facilitate breast cancer awareness which has the potential to result in better long-term outcomes through an early diagnosis of breast cancer.

Background: Obesity is higher in people with intellectual disabilities., Aims: There are two aims of this explorative paper. Firstly, using a realist lens, to go beyond 'what works' and examine the 'context, mechanisms and outcomes' (CMO) of lifestyle/obesity programmes for this population. Second, using a logic model framework to inform how these programmes could be implemented within practice., Method: We explored six-review papers and the individual lifestyle/obesity programmes that these papers reviewed using the CMO framework., Results: There were few theoretically underpinned, multi-component programmes that were effective in the short to long-term and many failed to explore the 'context and mechanisms'. We developed a logic model and engaged in two co-production workshops to refine this model., Discussion: Using a realist approach, programmes need to be underpinned by both individual and systems change theories, be multi-component, have a closer understanding of the interplay of the 'context and mechanisms', and co-designed using a logic model framework., (© 2020 John Wiley & Sons Ltd.)

Background: Women with an intellectual disability (ID) have a similar risk of developing breast cancer as women in the general population yet present with later stage breast cancers, which have poorer outcomes., Aim: To identify whether there is a need to develop a breast cancer awareness intervention for women with an ID., Methods: Interventions aimed at increasing cancer awareness and breast cancer awareness for people with an ID were identified and critically appraised., Results: Five interventions to increase cancer awareness or breast cancer awareness in people with an ID were identified., Conclusion: The review highlighted the paucity of theoretically underpinned breast cancer awareness interventions specifically aimed at women with an ID. Facilitating breast cancer awareness for women with an ID could potentially lead to earlier presentation of potential symptoms of breast cancer, earlier treatment, better prognosis and ultimately, improved survival. This article establishes that there is a need for an intervention underpinned by theory to increase breast cancer awareness in women with an ID.

Background: International debate around the best models of speech and language therapy provision for children with language disorders has highlighted the need for research into classroom-based approaches and intervention dosage. Working memory (WM) is a cognitive skill linked to attention and language. 'Recall to Enhance Children's Attention, Language and Learning' (RECALL) is a novel, 6-week, classroom-based intervention delivered by health professionals (HPs) and teachers. It is designed to target WM and enhance attention and language skills in 4-5 year olds., Methods: A cluster randomised feasibility trial was conducted to investigate aspects of the feasibility of a definitive trial to evaluate RECALL: (i) recruitment and sampling procedures; (ii) compliance and fidelity; (iii) the acceptability of RECALL to HPs and teachers; (iv) the appropriateness of the outcome measures. Six classes of 4-5 year olds participated: two received RECALL, two received an existing intervention targeting attention skills (not underpinned by WM theory), and two received education as usual (no intervention). Ten children in each class (n = 60) were sampled to assess the appropriateness of the outcome measures. Classroom observations were conducted to measure fidelity and semi-structured interviews with HPs, and teachers explored the acceptability of RECALL., Results: The recruitment targets were met, and all six schools completed the trial, but the sampling procedures require modification. Compliance was good (95% of RECALL sessions were delivered), but fidelity to the intervention protocol varied between 76% and 45% across the two schools. This was influenced by large class sizes, child factors, and facilitator factors, e.g., their understanding of the theory underpinning the intervention. The lack of fidelity reduced the dose (number of practice items) accessed by individual children, particularly those most at risk. There were mixed findings regarding the acceptability of RECALL and the appropriateness of the outcome measures., Conclusions: The trial protocol could be easily scaled-up in a future definitive trial, with an amended sampling procedure. RECALL should be repackaged as a small group intervention to enhance the fidelity of its delivery and its acceptability to HPs and teachers. This study highlights the need for thorough training for professionals who deliver classroom-based interventions for children with language disorders., Trial Registration: ISRCTN13633886 . Registered on 7 September 2018.

Background : Globally, professional firefighters are often exposed to traumatic events and are at high risk of developing posttraumatic stress disorder (PTSD) symptoms. Objective : With the publication of the 11th edition of the International Classification of Diseases (ICD-11) there arose a need for research based on the new diagnostic criteria, and the associated disorder, Complex PTSD (CPTSD). Method : Participants were 1300 former or present firefighters from the UK. Prevalence rates of PTSD and CPTSD were estimated using International Trauma Questionnaire in accordance with ICD-11 criteria, and service related and personal trauma exposure were also assessed using an anonymous online questionnaire. Multinomial logistic regression was performed to assess how service and personal trauma exposure predicted PTSD and CPTSD. Results : CPTSD criteria were met by 18.23% (95% CI 16.13-20.33%) and PTSD criteria were met by 5.62% (95% CI 4.37-6.87%) of the sample. Experiencing higher levels of service-related trauma significantly increased the risk for both PTSD and CPTSD, and nonwork related trauma uniquely predicted CPTSD but not PTSD. Conclusions : This study provided the first examination of the new ICD-11 criteria for PTSD and CPTSD in a large sample of firefighters, and CPTSD was more common than PTSD. Exposure to multiple different types of trauma increased the odds of PTSD and CPTSD., Competing Interests: No potential conflict of interest was reported by the authors., (© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.)

Aim: To compare the frequency and factors associated with diabetes medication-taking (depression, perceived side effects, self-efficacy and social support) in people with mild to moderate intellectual disability and those without intellectual disability., Methods: In stage 1 of this study, we collated information on diabetes medication-taking and associated factors in 111 people with diabetes: 33 adults with mild to moderate intellectual disability and 78 adults without intellectual disability. Validated instruments measuring medicine-taking, self efficacy, depressive symptoms, perceived level of social support and perceived side effects were administered in both groups. In stage 2, we used an abductive qualitative approach to triangulate stage 1 findings with carers responses (n = 12)., Results: The instruments showed good internal reliability (Cronbach's α = 0.7-0.9). Comparisons between people with intellectual disabilities and those without revealed similar frequency of medication-taking (70% vs 62%; P = 0.41). People with intellectual disabilities and diabetes had significantly higher depressive symptoms, as measured by the Glasgow Depression Scale for people with a Learning Disability (P = 0.04), higher levels of perceived side effects (P = 0.01), and lower confidence levels, as measured by the Perceived Confidence Scale (P = 0.01). The results of stage 2 showed how carers of people with intellectual disabilities and diabetes optimized medication-taking yet infrequently discussed the side effects of medicines., Conclusions: Further investigation of medication-taking and side effects may result in the development of an evidence-informed intervention to improve medicines safety in people with intellectual disabilities., (© 2020 The Authors. Diabetic Medicine published by John Wiley & Sons Ltd on behalf of Diabetes UK.)

Background: Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement., Method: Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi-squared statistics., Results: 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement., Conclusion: Death affects many people with intellectual disability. Staff require training and support in communicating death., (© 2020 John Wiley & Sons Ltd.)

The transformational role education plays in the lives of people with intellectual disabilities has not been fully examined. The purpose of this study was to explore and investigate the meanings people with intellectual disabilities construct of their experiences in post-secondary and higher education. Heideggerian hermeneutic phenomenology was the qualitative methodology adopted for the study. Individual interviews were conducted with 27 people with intellectual disabilities and analysed in stages. These stages included the creation of I-Poems offering a unique opportunity for individual participant voices to be heard. Three core themes emerged to describe living an authentic life: learning (with the emphasis on increased skills, independence and opportunities); relationships (in particular, the importance of friendships), and perceptions including the existing realities of life for those with intellectual disabilities. The findings advance previous work highlighting the link between living a more authentic life and how education transforms how people with intellectual disabilities view themselves.

Background: Globally, people with intellectual disabilities and/or autism experience health inequalities. Death occurs at a younger age and the prevalence of long-term morbidities is higher than in the general population. Despite this, their primary healthcare access rates are lower than the general population, their health needs are often unmet, and their views and experiences are frequently overlooked in research, policy, and practice., Aim: To investigate the barriers and facilitators reported by individuals with intellectual disabilities, autism, or both, and/or their carers, to accessing and utilising primary health care for their physical and mental health needs., Design & Setting: An integrative review was undertaken, which used systematic review methodology., Method: Electronic databases MEDLINE, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and Cochrane were searched for relevant studies (all languages) using a search strategy. Two researchers independently screened the results and assessed the quality of the studies., Results: Sixty-three international studies were identified. Six main themes relating to barriers and facilitators emerged from an analysis of these studies. The main themes were: training; knowledge and awareness; communication; fear and embarrassment; involvement in healthcare decision-making; and time. All the themes were underpinned by the need for greater care, dignity, respect, collaborative relationships, and reasonable adjustments. Opposing barriers and facilitators were identified within each of the main themes., Conclusion: Adolescents and adults with intellectual disabilities and/or autism experience several barriers to accessing and utilising primary health care. The findings highlight the reasonable adjustments and facilitators that can be implemented to ensure that these individuals are not excluded from primary health care., (Copyright © 2020, The Authors.)

Asplenia and hyposplenia (a/hyposplenia) are associated with increased morbidity and mortality from complications including infection. The recommended measures to reduce the risks associated with infection include patient education, vaccination and early initiation of antibiotic therapy for fever. Despite these recommendations, there is poor adherence to best practice management of patients with asplenia or hyposplenia (PWA/H). We present the development methodology and pilot data of a quality improvement project that explored whether a programme involving a novel medical alert card together with a patient and healthcare provider educational booklet increased vaccination rates and improved awareness and understanding of the infectious implications of a/hyposplenia. Our aim was to increase the proportion of those appropriately vaccinated and the proportion of patients with proper understanding of fever management by twofold in 18 months. Questionnaires were used locally as a root-cause-analysis to confirm the need for education and evaluate the effectiveness of the programme, as well as patient satisfaction. An interdisciplinary team developed a toolkit composed of a medical alert card and booklet. The toolkit was distributed to PWA/H who presented for a haematology clinic visit at a tertiary care centre. A separate set of questionnaires was then used to evaluate satisfaction and obtain feedback from patients and practitioners receiving the toolkit for the first time. Changes suggested by patients and practitioners with unanimous agreement among study investigators were made to the toolkit. The pilot study showed an increase in vaccination rates and awareness of vaccination status and appropriate fever management. The majority of the patients and practitioners found the information provided by the toolkit helpful. Given these promising single-centre findings, the intervention is being extended to another tertiary care centre with a large red blood cell disorders programme to evaluate its generalisability. The next step will be to expand the scope to paediatric PWA/H., Competing Interests: Competing interests: MS reports peer-reviewed grants for unrelated studies from Association of Hemophilia Clinic Directors of Canada Shire and Hemostasis and Thrombosis Research Society; unrestricted grants for unrelated studies from Octapharma, Amgen, Shire and Roche; personal fees from Novartis advisory board, Octapharma advisory board and Bayer advisory board. All other authors have nothing to disclose., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background/aims: People with intellectual disability experience higher rates of multi-morbidity and health inequalities, they are frequently prescribed medications and more likely to have an avoidable or premature death. There is a recognised lack of randomised controlled trials, and subsequently a lack of evidence base, for many of the interventions and treatments provided to people with intellectual disabilities. Very few disability-specific trials are conducted, and people with intellectual, and other cognitive, disabilities are routinely excluded from mainstream trials. There is an urgent need to facilitate more disability-specific trials or to encourage mainstream trialists to include people with disabilities in their studies. Obtaining a thorough understanding of the challenges inherent in these trials, and sharing this knowledge within the research community, may contribute significantly towards addressing this need. The aim of this study was to explore the practical and methodological challenges to conducting trials with adults with intellectual disabilities and to reach a consensus regarding which are the most important challenges for researchers for inclusion in a resource toolkit., Methods: A three-round modified Delphi survey was conducted with a panel of international trials researchers within the intellectual disability field. Items were assessed in terms of the consensus level and stability of responses., Results: A total of 64 challenges and barriers were agreed upon, across all aspects of the trial pathway, from planning through to reporting. Some challenges and barriers had been noted in the literature previously, but many previously uncited barriers (both systemic and attitudinal) were identified., Conclusion: This is the first international survey exploring the experiences of researchers conducting randomised controlled trials with adults with intellectual disabilities. Many of the barriers and challenges reported can be overcome with creativity and some additional resources. Other challenges, including attitudes towards conducting trials with disabled populations, maybe harder to overcome. These findings have implications for conducting trials with other populations with cognitive or communication difficulties. Implications for disability researchers, funding bodies and ethical review panels are discussed.

Aim and Objectives: To explore multidisciplinary team members' perspectives of clinical nurse specialists in intellectual disability nursing contribution in Ireland., Background: While clinical nurse specialist roles have advanced over time, they are viewed as multifaceted and complex roles creating confusion. This confusion is reinforced by the absence of studies on multidisciplinary team members' perspectives on the activities of clinical nurse specialists., Design: A cross-sectional study of multidisciplinary team members (n = 262). The survey instrument was developed based on the literature and the result of a previous qualitative study and survey of intellectual disability clinical nurse specialists., Methods: SPSS was used for data analyses and descriptive and inferential statistics. The STROBE checklist for cross-sectional studies was used for reporting, and both a university and service providers granted ethical approval., Findings: This study highlights that multidisciplinary team members identify the contribution and support that intellectual disability clinical nurse specialists provide across a range of practice areas. Clinical nurse specialists support the care process through supporting clients, staffs, families, organisations, communities and other agencies., Conclusions: Overall, the study reports and acknowledges the significance and contribution of intellectual disability clinical nurse specialists, across a range of practice areas and the support they provide for all stakeholders within the care process., Relevance to Clinical Practice: Clinical nurse specialists are central to the nursing profession as a lead clinical role in practice and play a key role within the multidisciplinary team. Highlighting the work of the clinical nurse specialist creates greater clarity and less role ambiguity/confusion., (© 2019 John Wiley & Sons Ltd.)

Background: Trauma and its sequelae is recognised as a major morbidity factor in people with intellectual disabilities, however, a lack of inquiry into how health care professionals address trauma in this adult population exists., Aims: To explore specialist intellectual disability practitioners perspectives on current health provision and developments to address trauma., Methods: Twenty-five qualitative interviews were conducted with practitioners across 6 health service areas in the UK. Data were analysed using thematic content analysis., Findings: Seven central themes emerged: (a) unmasked trauma; (b) trauma informed care; (c) person-centred care and support; (d) multi-disciplinary working; (e) reasonable adjustments; (f) barriers to treatment and (g) awareness, training and education., Conclusion: Trauma-informed care and multi-disciplinary working are essential components for future service development. Advances in the evidence-base for effective psychological interventions for PTSD and training and education of health care staff are needed in order to improve service provision amongst this population., (© 2019 John Wiley & Sons Ltd.)

There has been an exponential growth in the performance and output of sequencing technologies (omics data) with full genome sequencing now producing gigabases of reads on a daily basis. These data may hold the promise of personalized medicine, leading to routinely available sequencing tests that can guide patient treatment decisions. In the era of high-throughput sequencing (HTS), computational considerations, data governance and clinical translation are the greatest rate-limiting steps. To ensure that the analysis, management and interpretation of such extensive omics data is exploited to its full potential, key factors, including sample sourcing, technology selection and computational expertise and resources, need to be considered, leading to an integrated set of high-performance tools and systems. This article provides an up-to-date overview of the evolution of HTS and the accompanying tools, infrastructure and data management approaches that are emerging in this space, which, if used within in a multidisciplinary context, may ultimately facilitate the development of personalized medicine., (© The Author(s) 2018. Published by Oxford University Press.)

Objective: To report the results of the first randomized feasibility trial of Eye Movement Desensitization and Reprocessing (EMDR) plus Standard Care (SC) versus SC alone for DSM-5 posttraumatic stress disorder (PTSD) in adults with intellectual disabilities., Method: A total of 29 participants were randomized to either to EMDR + SC (n = 15) or SC (n = 14). Participants completed measures on traumatic stress (PCL-C) and comorbid distress at baseline, 1 week post-treatment and 3-month follow-up., Results: In the EMDR + SC group, 9 (60%) participants at post-treatment and 7 (47%) participants at 3-month follow-up were diagnosis free. In SC, 4 (27%) at post-treatment and follow-up were diagnosis free. At post-treatment, three participants (20%) dropped out from the EMDR + SC group, and 1 (7%) dropped out from the SC group., Conclusions: It is feasible, acceptable and potentially effective to deliver EMDR in this population group., (© 2019 John Wiley & Sons Ltd.)

Background: There is international recognition of the need for creative, classroom-based interventions to support children at risk of low academic achievement and well-being, due to poor attention and language skills on school entry. Working memory (WM) is a cognitive skill that is strongly associated with attention and language skills. There has been speculation that WM training, embedded within typical educational activities, may improve children's WM skills and produce transfer effects to real-world skills such as attention and language. However, little is known about the effectiveness of this approach.'Recall to Enhance Children's Attention, Language and Learning' (RECALL) is a novel, 6-week, classroom-based intervention targeting WM, attention and language skills in 4-5 year olds. RECALL was co-produced with health professionals, teachers and parents. This protocol describes the rationale, methods and analysis plan for a proposed cluster randomised feasibility trial of this RECALL programme., Methods: This is a three-arm, cluster randomised feasibility trial comparing RECALL to an existing programme (active control), and no-intervention (education as usual). We will recruit six schools in socially disadvantaged areas in one region of the UK. Two schools will be randomly allocated to each arm of the trial. In each school, one class of children (ages 4-5 years) of approx. 30 children will be involved in this study. Ten children in each class will be sampled purposefully for outcome measurement including: standardised assessments of WM, language and attention skills; teacher ratings of attention; and parent ratings of functional communication skills. These will be administered at baseline and 1-week post-intervention in order to test the acceptability of the measures. A process evaluation using semi-structured interviews with participants will explore the acceptability of RECALL and the procedures employed in this trial., Discussion: This feasibility study will explore the acceptability of RECALL to the health professionals and teachers who will deliver it and inform the optimal design of the programme. The inclusion of an active control group and the blinding of outcomes assessors enhance rigour in this study. The findings will determine whether this study can be scaled-up into a definitive cluster randomised trial to evaluate the effectiveness of RECALL., Trial Registration: ISRCTN13633886. Registered 7 Sept 2018., Competing Interests: Competing interestsThe authors declare that they have no competing interests.

Background: Whilst people with intellectual disability grow older, evidence has emerged internationally about the largely unmet health needs of this specific ageing population. Health checks have been implemented in some countries to address those health inequalities. Evaluations have focused on measuring process outcomes due to challenges measuring quality of life outcomes. In addition, the cost-effectiveness is currently unknown. As part of a national guideline for this population we sought to explore the likely cost-effectiveness of annual health checks in England., Methods: Decision-analytical Markov modelling was used to estimate the cost-effectiveness of a strategy, in which health checks were provided for older people with intellectual disability, when compared with standard care. The approach we took was explorative. Individual models were developed for a selected range of health conditions, which had an expected high economic impact and for which sufficient evidence was available for the modelling. In each of the models, hypothetical cohorts were followed from 40 yrs. of age until death. The outcome measure was cost per quality-adjusted life-year (QALY) gained. Incremental cost-effectiveness ratios (ICER) were calculated. Costs were assessed from a health provider perspective and expressed in 2016 GBP. Costs and QALYs were discounted at 3.5%. We carried out probabilistic sensitivity analysis. Data from published studies as well as expert opinion informed parameters., Results: Health checks led to a mean QALY gain of 0.074 (95% CI 0.072 to 0.119); and mean incremental costs of £4787 (CI 95% 4773 to 5017). For a threshold of £30,000 per QALY, health checks were not cost-effective (mean ICER £85,632; 95% CI 82,762 to 131,944). Costs of intervention needed to reduce from £258 to under £100 per year in order for health checks to be cost-effective., Conclusion: Whilst findings need to be considered with caution as the model was exploratory in that it was based on assumptions to overcome evidence gaps, they suggest that the way health systems deliver care for vulnerable populations might need to be re-examined. The work was carried out as part of a national guideline and informed recommendations about system changes to achieve more equal health care provisions.

It has been suggested that diverse interventions applied within children's everyday contexts have the potential to improve working memory (WM) and produce transfer to real-world skills but little is known about the effectiveness of these approaches. This review aims to examine systematically the effectiveness of non-computerised interventions with 4-11 year olds to identify: (i) their effects on WM; (ii) whether benefits extend to near- and far-transfer measures; (iii) if gains are sustained over time; (iv) the active ingredients; and (v) the optimum dosage. Searches were conducted across 12 electronic databases using consistent keywords. Papers were screened by title and abstract ( n =  6212) and judged against pre-defined eligibility criteria ( n =  63). Eighteen papers were included in the review. They used a range of non-computerised WM intervention approaches that included: (i) adapting the environment to reduce WM loads; (ii) direct WM training with and without strategy instruction; and (iii) training skills which may indirectly impact on WM (physical activity, phonological awareness, fantastical play and inhibition). Both direct training on WM tasks and practicing certain skills that may impact indirectly on WM (physical activity, fantastical play and inhibition) produced improvements on WM tasks, with some benefits for near-transfer activities. The common ingredient across effective interventions was the executive-loaded nature of the trained task i.e., training on a task that taps into attentional and processing resources under executive control and not just the storage of information. Few studies reported dosage effects, measured far-transfer effects ( n =  4), or tested the durability of gains over time ( n =  4). The lack of a clear theoretical framework in many of the included studies resulted in ambiguous predictions about training and transfer effects, and inadequate use of outcome measures. Methodological issues also constrain the strength of the evidence, including: small samples sizes; an absence of blinding of participant and outcome assessors; and lack of active control groups. Further well-designed and controlled studies with clear theoretical underpinnings are required to expand and enhance the evidence base. The heterogeneity of the interventions and of the study designs (randomised and non-randomised) in the included papers limited the synthesis of evidence across studies. However, this diversity enabled the identification of key ingredients, notably the training of executive-loaded WM tasks, which can help inform novel approaches to WM intervention in everyday contexts., Competing Interests: None.

Background: Across the world, research has shown that intervention for children with phonological impairment can be both effective and efficient. However, it has also raised concerns about the translation of this evidence to practice, highlighting questions around clinician knowledge and the understanding of approaches, and the intensity of intervention provided within real-life clinical contexts., Aims: To investigate the clinical management of phonological impairment by speech and language therapists (SLTs) in the United Kingdom (UK)., Methods & Procedures: An anonymous, UK-wide, online survey was developed using Qualtrics. The target audience were UK-based SLTs who worked with children with phonological impairment. The following topics were explored: (1) SLTs' understanding of intervention approaches; (2) SLTs' use of intervention approaches to treat phonological impairment; and (3) SLTs' provision of intervention intensity for children with phonological impairment., Outcomes & Results: A total of 166 responses were analyzed. To remediate phonological impairment, SLTs most commonly used speech discrimination (79.5%), conventional minimal pairs (77.3%), phonological awareness therapy (75.6%) and traditional articulation therapy (48.4%). Participants least frequently used the complexity approaches targeting the empty set (82.9%) and two- to three-element clusters (75%) as well as the cycles approach (75.6%). Results also showed that some SLTs were uncertain of what the empty set and two- to three-element clusters approaches entailed. In terms of intervention intensity, participants predominantly provided intervention once per week (69%) for a total of 9-12 sessions (ranging from five to 30 sessions, 71.5%) and elicited targets 10-30 times in single words per session (59.4%) in sessions lasting 21-30 min (41.4%)., Conclusions & Implications: The most commonly used intervention approaches identified in the current survey (i.e., speech discrimination, conventional minimal pairs and phonological awareness therapy) may be used eclectically by SLTs, which could impact upon the effectiveness and efficiency of treatment for phonological impairment. The current study also highlighted that almost half the participants always/often used traditional articulation therapy to remediate phonological impairment, even though this approach has been found to be less effective for this difficulty. Additionally, it appears that the currently provided intervention intensity for phonological impairment in the UK is significantly lower than what is indicated in the literature. Therefore, a research-practice gap exists for SLTs in the UK working with children with phonological impairment., (© 2018 Royal College of Speech and Language Therapists.)

Background: Individuals with intellectual disability (ID) are at greater risk of exposure to traumatic life events compared with the non-ID population. Yet no study to date has examined the role of multiple traumatisation and subsequent psychopathology in people with ID. The aim of this study was to explore the association between multiple traumatisation and subsequent mental health., Methods: A preliminary cross-sectional study involving 33 participants with DSM-5 post-traumatic stress disorder completed self-report questionnaires on exposure to traumatic life events and post-traumatic stress disorder symptoms, anxiety, depression and general distress., Results: A proportion of 42.4% of the sample reported multiple traumatisation, including exposure to life events in both childhood and adulthood. Those who reported exposure to life events in childhood and adulthood reported significantly higher risk of harm, depression and general psychological distress compared with those who reported exposure to life events only in adulthood., Conclusions: Preliminary results indicate that more severe psychopathology is associated with multiple traumatisation in childhood and adulthood compared with trauma experienced solely in adulthood., (© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)