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

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

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

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

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

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

The present study aims to test a model in which basic psychological needs (BPN) satisfaction in physical‐sport activity contexts is associated with self‐determined motivation, which, in turn, would predict the social inclusion of people with intellectual disabilities. A total of 286 people with intellectual disabilities (53.5% men) who reported engaging in physical‐sport activities responded to a validated questionnaire about the satisfaction of their BPN, motivation (using the Self‐determination index [SDI]), and social inclusion. A Pearson's bivariate correlation and structural equation modeling were conducted. The resulting model was reanalyzed in a multigroup analysis to test its invariance across self and proxy reports. Positive associations were found between the satisfaction of the BPN and the SDI. However, the SDI and social inclusion were positively associated only in proxy reports (βself = 0.07 vs. βproxy = 0.30). The tested model established positive relationships between the BPN and SDI in autonomy (βself = 0.21 vs. βproxy = 0.18), competence (βself = 0.47 vs. βproxy = 0.53), and relatedness (βself = 0.21 vs. βproxy = 0.23). Further research is needed to understand the factors leading to discrepancies between participants and proxies when relating the SDI to social inclusion in the context of physical‐sport activity. However, the results obtained suggest that it would be optimal to develop contexts of practice for people with intellectual disabilities in which the satisfaction of their BPN is favored and that this has a positive impact on their motivation and social inclusion. Highlights: In the context of physical‐sport activity practice, the satisfaction of basic psychological needs in people with intellectual disabilities seems to be associated with developing more self‐determined motivation, with a strong association found between competence satisfaction and self‐determined motivation.Self‐determination index appears to have a positive relationship with the social inclusion of people with intellectual disabilities in physical‐sport activity contexts.Discrepancies have been found between the perceptions of people with intellectual disabilities and proxies regarding the terms of this relationship, necessitating research to understand better the factors that may be generating such discrepancies. [ABSTRACT FROM AUTHOR]

Introduction: Support staff within social care settings have expressed a need for resources to facilitate end‐of‐life care planning with people with intellectual disabilities. This study aimed to co‐design a preliminary toolkit of end‐of‐life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. Methods: An adapted Experience‐Based Co‐Design process was applied to develop a toolkit for end‐of‐life care planning with people with intellectual disabilities. A co‐design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co‐facilitated the workshops), five family members, five intellectual disability support staff including two intellectual disability service managers, and five healthcare professionals. Results: The All Together Group tested resources for and approaches to end‐of‐life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy‐read end‐of‐life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation‐starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end‐of‐life care planning with people with intellectual disabilities. Conclusion: Through an iterative, flexible, inclusive, and comprehensive co‐design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end‐of‐life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. Patient or Public Contribution: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.‐B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co‐design group as well. Two of these representatives were also co‐applicants in the overall project (N.P. and S.S.). The co‐design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers. Practitioner Points: To facilitate proper and timely end‐of‐life care planning, resources and approaches should be developed together with people with intellectual disabilities and support staff to make sure they are relevant, accessible, and workable in social care practice.People with intellectual disabilities prefer visual and creative approaches to end‐of‐life care planning rather than easy‐read plans and forms.Co‐producing an end‐of‐life care planning toolkit is an iterative, time‐consuming, and complex process, which requires a flexible approach, adapting to the feedback from and needs of co‐design group members. [ABSTRACT FROM AUTHOR]

Background: Implementation issues often hinder reaching the potential of care technology to improve daily lives of people with intellectual disabilities. We investigated barriers to and facilitators of implementing different technology modalities (app/social robot/sensor/domotics) in long‐term care. Method: Care professionals (N = 83) from 12 Dutch disability care organisations completed a customised measurement instrument for determinants of innovations (MIDI) questionnaire. Results: Out of 27 determinants, 20 were identified as facilitators and 16 as barriers. We highlight common barriers: few colleagues who work with the technology; no (awareness of) formal ratification of technology use; no arrangements regarding turnover of staff using the technology; unsettling organisational changes; technological defects and limited IT preconditions. Conclusions: The results, which could be combined and compared across study sites, provide insight into which implementation determinants were already well addressed, and where there is ground to gain when implementing care technology in disability care organisations. [ABSTRACT FROM AUTHOR]

Background: This study examines the extent of exposure to verbal violence experienced by people with intellectual disabilities and whether it differs based on their housing situation: living in the community, with family, or in a residential facility. Method: One hundred and eighty‐nine people with intellectual disabilities were interviewed about their experience with verbal violence. Results: Eighty‐six percent reported experiencing verbal violence in their lifetime and approximately 77% experienced it the past week. Participants were most likely to be yelled at, and friends were the most common perpetrators. While there were few differences by setting, people living with their families were more likely to be laughed at and marginally more likely to experience rude comments. Conclusions: Verbal violence is prevalent in the lives of people with intellectual disabilities in Israel. Interventions are necessary to assist people with intellectual disabilities to deal with such incidents, with possible additional supports needed for those living with family. [ABSTRACT FROM AUTHOR]

Background: Special attention is required when considering any educational intervention aimed at its promotion and development. Our objective is to conduct an umbrella review of systematic reviews that gather evidence from relationships and sex education programmes tailored for individuals with intellectual disabilities. Methods: The protocol was developed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta‐analyses Protocol. Systematic reviews were identified through a search in Web of Science, SCOPUS and PsychINFO, using the descriptors: 'intellectual disab*' AND 'sex*'AND 'systematic'. Findings: The results of the nine reviews included in the meta‐review yield relevant outcomes related to 50 sex education interventions carried out with people with intellectual disabilities. This provided the opportunity to delve into the characteristics of these interventions to ascertain the accomplishments achieved to date. Conclusions: The findings serve as foundation to propose and promote new research on this important area of life, addressing the inequalities identified concerning the sexuality and affective‐sexual education of people with intellectual disabilities. It offers valuable information for the educational, social and healthcare fields, facilitating the design of more effective and rights‐respecting initiatives. Accessible summary: What we wanted to do: We wanted to see what different studies say about teaching people with intellectual disabilities about relationships and sex education and how well these lessons are working.What we found: Our discoveries can help us think of new ideas to help people with intellectual disabilities understand love, relationships, hygiene and body changes and get better at making friends. Educative, social and health centres can use this information to find better ways to support sexuality and rights. [ABSTRACT FROM AUTHOR]

Background: In people with intellectual disabilities and mental disorders and/or challenging behaviours, rates of psychotropic drug prescription are high. In clinical treatments and evaluations, all stakeholders should be involved in a process of shared decision‐making (SDM). We aimed to investigate the perspectives of clients and their carers on clients' treatments with psychotropic drugs. Methods: We conducted a survey among adults with intellectual disabilities in a Dutch mental healthcare centre providing community, outpatient and inpatient care. Data were collected between January and June 2022. Questions focused on experiences with the provision of information, treatment involvement and SDM and participants' wishes in this regard. Findings: Respondents (57 clients and 21 carers) were largely satisfied with the overall care from their clinicians, and with how information on the pharmacological treatment was provided verbally, but written information was insufficient or not provided. Seventy per cent of clients and 60% of carers reported being involved in medication decision‐making. However, over 75% of participants desired greater involvement in SDM and over 60% in medication reviews. Conclusions: Service users and representatives were satisfied about the treatment and verbal information on their psychotropic drug use. The provision of written information, the SDM process and ongoing evaluation of psychotropic medication use could be improved. Accessible summaries: People with intellectual disabilities are often prescribed medication for mental or behavioural disorders.It is important that healthcare professionals listen to the views of people who are prescribed this medication.However, people may not be involved enough when decisions are made about their medication. They might not have enough information about their medication in a way that they understand. We wanted to know the views of clients with intellectual disability about their psychotropic medication use. We invited clients, their representatives and paid carers of a specialist mental healthcare centre to take part in a survey. Questions were about: (1)The relationship with their doctor.(2)If they were given the right information.(3)Involvement in medication evaluations.(4)Involvement in decisions regarding their medications. Seventy‐eight service users (57 clients and 21 carers) completed the questionnaire. Answers were that: (1)Service users were satisfied with the overall care from their doctor.(2)Service users were satisfied with the information about the prescription of medication that was provided verbally.They were less satisfied about written information that they received about their psychotropic medication.(3)Most service users reported being involved in medication decision‐making, but fewer than half were completely satisfied with this.(4)Most service users wanted to be more involved in decisions about their medication. Our findings mean that healthcare professionals need to do more to involve service users with learning disabilities in decisions about their medication. [ABSTRACT FROM AUTHOR]

Background: To improve the quality of palliative care, six evidence‐based tools were implemented in 10 care services specialised in care for people with intellectual disabilities. Contextual differences were taken into account by using a participatory action research approach. Method: The RE‐AIM framework (Reach, Effectiveness, Adoption, Implementation and Maintenance) structured the evaluation. Data sources were online questionnaires completed by 299 professionals at baseline (response 45.2%) and 250 professionals after 2.5 years (35.1%), 11 semi‐structured group interviews with 43 professionals, field notes and implementation plans. Results: A total of 767 professionals and 43 teams were reached. The effectiveness of the intervention was demonstrated in an improved knowledge of palliative care policy and increased competences among professionals. 79% of the professionals adopted tools in the toolbox. The participatory action research method was perceived as valuable in driving change. Conclusions: Improving palliative care needs a context‐specific, flexible approach, with involvement of all stakeholders. [ABSTRACT FROM AUTHOR]

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

Background: We investigated the prevalence of swallowing difficulties and associated factors in people with intellectual disability. Methods: We included people aged 50+ receiving care for people with intellectual disabilities. The Dysphagia Disorder Survey (DDS) was used to assess swallowing difficulties. We determined the agreement between the DDS and swallowing difficulties in medical records. We used logistic regression analyses to explore associated factors. Results: One thousand and fifty people were included. The prevalence of swallowing difficulties was 43.8%. Swallowing difficulties were not reported in the medical records of 83.3% of these cases. Frailty (odds ratio (OR) = 4.22, 95% CI = 2.05–8.71), mobility impairment (OR = 2.50, 95% CI = 1.01–6.19), and mealtime dependency (OR = 3.05, 95% CI = 1.10–8.47) were independently associated with swallowing difficulties. Conclusion: Swallowing difficulties are prevalent in older people with intellectual disability but may be under‐recognised. Frailty may be a good indicator for population‐based screening for swallowing difficulties. [ABSTRACT FROM AUTHOR]

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

Background: Older people with intellectual disabilities and their families report a lack of support for planning for parental death and transitions in care. This article aims to demonstrate the process of co‐designing resources to support older people with intellectual disabilities and their families to plan for the future. Methods: Following interviews and focus groups with older people with intellectual disabilities and their families, we used an adapted experience‐based co‐design process to develop planning ahead resources. This included a 'trigger film' summarising findings from the earlier interview study, 12 co‐design workshops and a user feedback phase. Results: The co‐design group developed a set of 102 'Planning Ahead Cards' to help families to talk about the future and prepare for meetings with social care professionals. The group made decisions about the content, format and design of resources, and how co‐design workshops would run. The user feedback phase led to changes to the cards, and families and stakeholder groups suggested that they would be useful for planning ahead. Conclusion: The Planning Ahead Cards may facilitate planning for parental death and transitions in care for older people with intellectual disabilities and their families. The co‐design approach was key to ensuring that the resources were useful and accessible for families. Patient or Public Contribution: People with intellectual disabilities and their families contributed to the design of the resources through the co‐design workshops and feedback phase. The research team includes a research assistant with intellectual disabilities who co‐facilitated co‐design workshops and co‐authored this article. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are less physically active and suffer from ill‐health more than the general population. Support staff play an important role in the person's life. This study aimed to explore the support staff's experiences regarding the feasibility of adapted web‐based exercise for people with intellectual disabilities. Method: Participants with intellectual disabilities living in community‐based settings were recruited for a web‐based exercise study. Eight semi‐structured interviews were carried out with their support staff before and after the intervention period. Results: The main theme, 'Support staff are crucial for feasibility' encompasses the importance of communication, structure, and motivation in improving physical activity for people with intellectual disabilities. Conclusion: The experiences of support staff, indicate that a web‐based exercise program is feasible for the target group, and one way to overcome challenges for PA, where the role of the staff is crucial. [ABSTRACT FROM AUTHOR]

Background: The study reports the impact of the Covid‐19 pandemic and lockdowns on jobs for people with intellectual disabilities and autism. The study focuses on the impact of the first and the fire‐break lockdowns and the actions taken to support young people. Method: Data was collected from the cohort of young people currently working in Wales, and that received job coach support from the Engage to Change Project, on furlough arrangements, job retainment and job losses. Innovative initiatives to support young people are described. Results: Review of the working situation during the pandemic was conducted for 184 jobs, evaluating the proportion of young people being furloughed or working remotely and compared with the general population in Wales. Conclusions: Supported employment agencies adapted their practice during the COVID‐19 pandemic, offering new and innovative ways to support young people and facilitate their return to work. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting. Method: This qualitative study used reflexive thematic analysis. Two focus groups were held via Zoom with a total of four participants. Results: Three themes were produced: Unsettling Transitions, Maintaining Familiarity, and Respecting People's Wishes. Keeping things as unchanged as possible at end of life was highlighted as an ideal. Respecting people's wishes and education were highlighted as facilitators to good end of life care. Conclusions: The themes identified in this study highlight the fears and wishes of this population with regards to receiving quality end of life care. Training for staff and families, as well as advanced care planning, could focus on enhancing facilitators and decreasing barriers for this population. [ABSTRACT FROM AUTHOR]

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

Background: There is limited understanding of the context surrounding physical activity (PA) of young people with intellectual disabilities (ID), which has an impact on the development of PA promotion programmes. Peer social connectedness seems to be a vital correlate to focus on, but has not been included in current studies examining the correlates and determinants of PA levels of young people with ID. This study aims to synthesise the evidence on (1) the social constructs researchers have used to conceptualise peer social connectedness in a PA context among young people with ID, (2) the measurement tools that have been used and (3) the relationship between PA and peer social connectedness in young people with ID. Methods: The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. Ovid MEDLINE, Ovid Embase, Web of Science, ERIC, CINAHL and PsycINFO were searched from 1 January 1996 up to, and including, July 2023 to identify English‐language studies, which examined associations between PA and peer social connectedness in adolescents and young adults (13–24 years) with ID. Study quality was assessed using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields. Results: Thirteen studies met the inclusion criteria and were included in the review. Ten peer social connectedness constructs and 18 measurement instruments were identified. Studies were predominantly focused on Special Olympics participants and unified activity formats. Participation in PA can increase social connectedness, but there is a lack of studies examining whether PA can also be increased by focusing on peer social connectedness in young people with ID. Conclusions: Results show that peer social connectedness is recognised as relevant to researchers developing and testing PA programmes for young people with ID. [ABSTRACT FROM AUTHOR]

The aim of this article is to present explicit and implicit attitudes of occupational therapy (OT) staff towards people with intellectual disabilities. The study was conducted on a group of 77 OT employees. To explore the explicit attitude, the Conditional Respect for Persons with Disabilities Questionnaire (Kurtek, Roczniki Psychologiczne, 2018, 4, 327–344) was used, while to estimate the implicit attitude, the Intellectual Disability Attitudes Implicit Association Test was applied (Kurtek, Roczniki Psychologiczne, 2021, 1, 43–64). At the explicit level, OT staff tended to tolerate negative and overrate positive behaviours of people with intellectual disabilities, which indicates a tendency to favour the individuals. However, the opposite devalorizing tendency was observed at the implicit dimension, which indicates aversive ableism. Although the study confirmed the independence of the two dimensions of the personnel's attitude, relationships were observed between the disclosure of negativity towards antagonistic behaviours of the people with intellectual disabilities and a decrease in the level of their implicit devaluation. [ABSTRACT FROM AUTHOR]

Background: There has been extensive research into adverse childhood experiences (ACEs), however, less consideration has been given to the prevalence and impact of ACEs for staff working with people with intellectual disabilities. Method: Participants were staff employed by agencies that care for people with intellectual disabilities. An online survey collected demographic information and measures of ACEs, resilience, trauma‐informed organisational climate, burnout and secondary traumatic stress. Correlation, regression, mediation and moderation analyses were used. Results: 81.7% of 109 participants had experienced at least one ACE. Burnout, secondary traumatic stress and resilience were greater in the present study than in comparable samples. Trauma‐informed organisational climate significantly predicted burnout and secondary traumatic stress. Resilience significantly predicted burnout. Conclusions: Staff working with people with intellectual disabilities are likely to have experienced ACEs. Working in a trauma‐informed organisational climate and resilience may be effective avenues for reducing burnout and secondary traumatic stress. [ABSTRACT FROM AUTHOR]

Background: People with intellectual/intellectual and physical disabilities frequently use day‐service centres, an array of services that involve the provision of care and social activities during the daytime and offer homebound people with disabilities opportunities to live in their communities. While nurses working at day‐service centres for people with disabilities are expected to promote service‐users' health, little research has focused on this area. Nurses' relationships with service‐users of day‐service centres have not been sufficiently investigated regarding how their interactions determine service‐users' specific activities and daily lives within such facilities. This study sought to address this research gap. Methods: We conducted a qualitative descriptive study with six nurses working at day‐service centres located in Tohoku region, Japan. Six participants were interviewed 16 times. The psychological‐phenomenological method developed by Amedeo Giorgi was used as the model for data analysis. Findings: The analysis generated five themes. First, nurses show interest in service‐users by 'continuing to show interest' and by 'trying to understand the service‐users from the perspective of what they can do'. Additionally, the nurses ensure that service‐users enjoy their time in the facility by 'supporting enjoyment through nursing and medical care', 'stabilising feelings' and 'creating an environment conducive to everyone's comfort'. Conclusions: Nurses working at day‐service centres for people with intellectual/intellectual and physical disabilities provide support for social participation while maintaining the service‐users' mental and physical health. Thus, these nurses support enjoyment among service‐users from the nursing and medical care aspect; they also devise ways for service‐users to interact and adjust to the environment to improve service‐users' comfort at day‐service centres. Furthermore, participation in daytime activities at day‐service centres indicated that nurses are interested in service‐users' activities, and they perceive service‐users as positive individuals. Accessible summary: This study shows how nurses working at day‐service centres for people with disabilities in Japan understand their approach and engage with service‐users.Nurses working at day‐service centres understood the service‐users and focused on what they were good at and what they were able to do. Based on this understanding, the nurses use specialised knowledge to ensure that service‐users can enjoy their time at the day‐service centres, while providing approaches for mental and physical stability and support for daytime activities.Nurses attempt to make service‐users feel comfortable at day‐service centres to encourage them to continue visiting the centres.This study is relevant to people with disabilities, as it contributes to future nursing care direction for this population from the perspective of nurses' professional experiences. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities (ID) have a higher risk of sleep disorders. Polysomnography (PSG) remains the diagnostic gold standard in sleep medicine. However, PSG in people with ID can be challenging, as sensors can be burdensome and have a negative influence on sleep. Alternative methods of assessing sleep have been proposed that could potentially transfer to less obtrusive monitoring devices. The goal of this study was to investigate whether analysis of heart rate variability and respiration variability is suitable for the automatic scoring of sleep stages in sleep‐disordered people with ID. Methods: Manually scored sleep stages in PSGs of 73 people with ID (borderline to profound) were compared with the scoring of sleep stages by the CardioRespiratory Sleep Staging (CReSS) algorithm. CReSS uses cardiac and/or respiratory input to score the different sleep stages. Performance of the algorithm was analysed using input from electrocardiogram (ECG), respiratory effort and a combination of both. Agreement was determined by means of epoch‐per‐epoch Cohen's kappa coefficient. The influence of demographics, comorbidities and potential manual scoring difficulties (based on comments in the PSG report) was explored. Results: The use of CReSS with combination of both ECG and respiratory effort provided the best agreement in scoring sleep and wake when compared with manually scored PSG (PSG versus ECG = kappa 0.56, PSG versus respiratory effort = kappa 0.53 and PSG versus both = kappa 0.62). Presence of epilepsy or difficulties in manually scoring sleep stages negatively influenced agreement significantly, but nevertheless, performance remained acceptable. In people with ID without epilepsy, the average kappa approximated that of the general population with sleep disorders. Conclusions: Using analysis of heart rate and respiration variability, sleep stages can be estimated in people with ID. This could in the future lead to less obtrusive measurements of sleep using, for example, wearables, more suitable to this population. [ABSTRACT FROM AUTHOR]

Background: The objective of this study was to evaluate the effectiveness of a 14‐week resistance training programme implemented with high levels of effort to improve physical fitness in people with intellectual disabilities (IDs) living in group homes. Methods: Fifty‐two individuals with mild to moderate IDs participated in the experimental (n = 27; 15 men) or control groups (n = 25; 14 men). Participants performed 2 familiarisation sessions, 1 pretest, 42 training sessions (14 weeks × 3 sessions; only the experimental group) and 1 posttest. The testing sessions comprised the evaluation of body composition, static balance and muscle strength. The training sessions included four blocks: (1) dynamic bodyweight exercises, (2) dynamic exercises performed against external loads, (3) ballistic exercises and (4) static exercises. Results: The main findings revealed that all variables related to body composition and muscle strength improved more after the intervention period in the experimental group than the control group, whereas the improvements in static balance for the experimental groups were lower than for the remaining variables used as markers of physical fitness. Conclusions: These findings highlight the importance of prescribing specific moderate‐intensity to high‐intensity resistance training programmes to improve body composition and muscle strength for people with IDs living in group homes. [ABSTRACT FROM AUTHOR]

Background: Photovoice is an arts‐based participatory action research methodology that is growing in popularity. Our aim was to systematically review photovoice research with people with intellectual disabilities to describe the current 'state of the art' and identify areas for further methodological consideration. Methods: We searched five databases using search terms relating to photovoice and intellectual disabilities. Thirty one studies met inclusion criteria. We used thematic analysis to identify common themes. Findings: The themes identified—adaptations to the photovoice method, collaboration, participation and power, impact and outcomes—explored how far the 'voice' and agency of participants with intellectual disabilities taking part in photovoice research were supported and whether photovoice lived up to its promise as 'action' research. Conclusion: Photovoice creates opportunities for self‐representation of people with intellectual disabilities through photography. Participants could be further supported to engage with researchers in critical reflection on findings and collaborate on tangible outcomes. [ABSTRACT FROM AUTHOR]

Background: Using inclusive research methods with people with intellectual disabilities is increasingly common. A recent consensus statement identified key elements when conducting and reporting inclusive research with people with intellectual disabilities. This review identifies the range of health and social care research topics using inclusive research methodologies, systematically appraises the involvement of researchers with intellectual disabilities, and identifies facilitators and barriers to inclusive research. Researchers' experiences of engaging with inclusive research are synthesised. Method: Seventeen empirical studies focused upon inclusive health and social care research were identified. The associated inclusive research methodologies employed, and the stages in which researchers with intellectual disabilities were involved, along with the experiences of researchers with and without intellectual disabilities were synthesised. Results: Papers focused on a broad range of health and social care topics and largely employed qualitative or mixed‐methods designs. Researchers with intellectual disabilities were frequently involved with data collection, analysis and dissemination. Facilitators of inclusive research comprised sharing power, team working, having sufficient resources and making research methodologies accessible. Conclusions: Researchers with intellectual disabilities are involved in a wide range of methodologies and research tasks. How the added value of inclusive research is measured and its impact on outcomes, require consideration. [ABSTRACT FROM AUTHOR]

It is increasingly recognised that many people with intellectual disabilities suffer from post‐traumatic stress disorder (PTSD). Eye‐movement desensitisation and reprocessing (EMDR) has been proposed as a potentially helpful intervention that is less reliant on verbal skills than other effective treatments for PTSD and therefore could be more effective than verbal interventions for people with intellectual disabilities. The Trauma‐AID project is a randomised clinical trial (RCT) evaluating the effectiveness of a bespoke EMDR protocol for adults with intellectual disability and PTSD, which incorporates a prolonged phase of Psycho‐Education and Stabilisation (PES) prior to the trauma confrontation phase of EMDR. The COVID‐19 pandemic struck during the feasibility phase of the Trauma‐AID project, necessitating a second feasibility study to evaluate the acceptability and feasibility of remote or hybrid delivery of the PES + EMDR protocol. To this end, we conducted two online surveys of therapists followed by interviews with clients, carers and senior therapists. The surveys were analysed descriptively. Content analysis was used for client and carer interviews, and framework analysis for therapist interviews. All stakeholders reported positive experiences of EMDR; however, some challenges were identified. The majority of clients, carers and therapists interviewed reported that the intervention, whether PES alone or the full PES‐EMDR package, had improved symptoms of PTSD and psychological well‐being, and carers also reported decreases in challenging behaviour. A full account of the data is provided in four Supplementary Digital files. PES‐EMDR therapy appears both feasible and acceptable for clients with intellectual disabilities and therapists, whether delivered face‐to‐face or in a remote or hybrid mode, though remote working appears easier for the PES phase than the EMDR phase of the intervention. [ABSTRACT FROM AUTHOR]

Aims: The International Trauma Questionnaire (ITQ) is a novel assessment instrument that is aligned to the ICD‐11 diagnoses of post‐traumatic stress disorder (PTSD) and complex PTSD (CPTSD). The purpose of this study was to develop and evaluate an adapted version of the ITQ suitable for use by people with intellectual disabilities. Methods: The ITQ‐ID follows the original ITQ, using wording developed in collaboration with a focus group of people with intellectual disabilities The ITQ‐ID was administered to 40 people with intellectual disabilities recruited from learning disability forensic and community settings, alongside a Trauma Information Form and the Impact of Event Scale‐Intellectual Disabilities (IES‐IDs). Results: Most participants reported multiple traumatizing events. Around half of the participants met strict criteria for a diagnosis of PTSD, and around three quarters met looser criteria. Depending on definitions, between 66% and 93% of those who met criteria for PTSD also met criteria for a diagnosis of CPTSD. The ITQ‐ID showed a single‐component structure, with very good‐to‐excellent internal consistency, excellent test–retest reliability, and evidence of concurrent, discriminant, and content validity. Significance: The results support the potential of the ITQ‐ID for assessment of PTSD and CPTSD in people with intellectual disabilities in both clinical and research contexts and highlight the need for further validation work. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: There is evidence that psychotropic medications are overprescribed and overused to manage behaviours of concern for people with intellectual disabilities. Disability support workers and support staff lack education and training on the administration and safety of psychotropic medication use. This study aimed to test the applicability and preliminary efficacy of SPECTROM, an education programme developed in the UK, in an Australian context. Methods: The training comprises two parts: Module 1 encompasses psychotropic medications, their use and side effects. Module 2 focuses on non‐pharmacological interventions for supporting people with behaviours of concern. Thirty‐three participants attended the training course and completed pre‐training and post‐training surveys on the Psychotropic Knowledge Questionnaire and Management of Aggression and Violence Attitude Scale‐Revised at four time points: pre‐training, 2 weeks, 3 months and 5 months post‐training. Results: Psychotropic Knowledge Questionnaire scores showed statistically significant post‐training improvement at all post‐training time points (P < 0.05). Management of Aggression and Violence Attitude Scale‐Revised scores were high at pre‐training and did not change significantly at any of the post‐training survey time points. A 2‐week post‐training feedback questionnaire reported 80% agreement that the training programme was appropriate, useful and valid. Only 36% of participants completed questionnaires at all time points. Conclusions: SPECTROM training increased staff knowledge of psychotropic medications, yet loss of participants was high. Further refinement of the applicability of the training for the Australian context and evaluation of the feasibility of implementation, clinical and cost‐effectiveness of the programme are required. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Mainstream economic evaluations methods may not be appropriate to capture the range of effects triggered by interventions for people with intellectual disabilities. In this systematic review, we aimed to identify, assess and synthesise the arguments in the literature on how the effects of interventions for people with intellectual disabilities could be measured in economic evaluations. Method: We searched for studies providing relevant arguments by running multi‐database, backward, forward citation and grey literature searches. Following title/abstract and full‐text screening, the arguments extracted from the included studies were summarised and qualitatively assessed in a narrative synthesis. Results: Our final analysis included three studies, with their arguments summarised in different methodological areas. Conclusions: Based on the evidence, we suggest the use of techniques more attuned to the population with intellectual disabilities, such sensitive preference‐based instruments to collect health states data, and mapping algorithms to obtain utility values. [ABSTRACT FROM AUTHOR]

Objectives: Mental imagery is important in the development and maintenance of psychological disorders and well‐being but has been neglected in people with intellectual disabilities. A detailed idiographic analysis of the lived experience of mental imagery in this population is presented. Design: This qualitative study uses interpretative phenomenological analysis (IPA). It involved inclusive research methods with people with intellectual disabilities and other stakeholders (including family members, advocates, support workers and intellectual disability service managers). Methods: Ten individual semi‐structured interviews were conducted with people with mild–moderate intellectual disabilities. Participants were opportunistically sampled through organisations providing community services to people with intellectual disabilities in the UK. Two men and eight women (mean age 43 years) participated. Interviews were audio‐recorded and analysed using IPA. Results: People with intellectual disabilities are able to experience a range of rich and detailed mental images across all sensory modalities. Participants reported changes in affect based on mental imagery, and an ability to experience both spontaneous and deliberate mental images. The emotional saliency of the object of mental imagery appeared to influence participants' ability to engage with imagery. A number of adaptations make mental imagery more accessible and easier to report. The ability of people with intellectual disabilities to experience vivid mental imagery has important clinical implications for the use of a range of mental imagery interventions with this population. Conclusions: The need to consider mental imagery interventions for this population, and how these can be adapted to ensure accessibility is a priority for people with intellectual disabilities and psychological disorders. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities generally have poorer health outcomes compared with those who do not, including outcomes related to nutrition‐related non‐communicable diseases. Carers support people with intellectual disabilities in many aspects including habitual shopping and preparation of food, but their own nutrition knowledge and the influence this may have on dietary intakes of clients is unknown. We explored the nutrition knowledge of carers of people with intellectual disabilities in residential care settings, their dietary habits and their influence on clients' food shopping and preparation and therefore the diet consumed by their clients. Ninety‐seven carers belonging to a large independent care sector organisation specialising in the care of people with an intellectual disability completed a validated general nutrition knowledge and behaviour questionnaire. Seventeen carers from the residential care settings were interviewed to contextualise practice. Knowledge about key dietary recommendations scored highly. Carers who had more work experience were found to have higher scores in 'making everyday food choices' (p = 0.034). Daily consumption of fruit and vegetables (at least one portion per day) was observed (for fruit by 46% of the carers and for vegetables by 60% of the carers), whilst most carers reported avoiding consuming full‐fat dairy products, sugary foods and fried foods. The concept of a healthy diet; typical dietary habits of clients; role in food acquisition; and training in nutrition emerged as themes from the interviews. Carers discussed various topics including the importance of a balanced diet, cooking fresh foods and control of food portion sizes for clients relative to the care philosophy of a client‐centred approach, which encapsulates client autonomy. Gaps in knowledge around specific nutrients, making healthy choices and cooking skills remain. Carers have an influence on clients' dietary choices; they are able to provide healthy meals and share good dietary habits with clients. Further training in nutrition is recommended for impact on clients' health. [ABSTRACT FROM AUTHOR]

Background: Non‐communicable diseases (NCDs), also known as chronic diseases, now constitute a major proportion of ill‐health across most adult and older populations including in people with intellectual disability. The current paper is a comparative analysis of prevalence of NCDs across mid‐aged and older‐aged people with mild intellectual disability. Method: Comparative data comes from two cross‐sectional surveys using similar methodology and timeframes. The analysis sample comprises mid‐aged group (30–50 years, N = 291) and older‐aged group (≥60 years, N = 391). Results: People with mild intellectual disability start developing NCDs in early to mid‐adulthood and increases with age. The mean number of NCDs in mid‐aged group was 0.86 (SD, 0.84) compared to 3.82 in older group (SD, 2.67). Conclusion: There needs to be early identification and management of NCDs using relevant health promotion and preventative measures at optimal intervention points. The training of healthcare professionals needs improvement. [ABSTRACT FROM AUTHOR]

Genetic variations are overrepresented in people with intellectual disability (PwID), particularly those with physical and mental health co‐morbidities, but remain significantly under‐diagnosed. Lack of suitable research studies, a natural extension of the complexities posed of consenting and recruitment is considered culpable. There is a resultant dearth of evidence on establishing bespoke genetic studies for adult PwID. This report outlines the challenges faced in the implementation and administration of a pilot genetic study for adult PwID hoping to better inform future genetic study designs for PwID. Adult participants with a diagnosis of ID (ICD10 F70‐F73) and epilepsy (ICD10 G40) were recruited to The Peninsula study exploring genomic stratification in intellectual disability and epilepsy via the ethically approved Royal Devon and Exeter Tissue Bank (RDETB) (16/SC/016). Managed within the National Institute for Health Research (NIHR) Exeter Clinical Research Framework, the RDETB was set up to proactively collect and store 'spare' tissue from routine clinical procedures such as venepunctures for routine good practice biochemistry monitoring. Participants who satisfied the criteria for the need for routine bloods to monitor their general health were identified to be invited for participation. From October 2017 to March 2020 from a total caseload of 375 PwID and epilepsy, 291 were screened (77.6%), 116 (39.9%) identified as potentially eligible and sent study information and genetic samples obtained from 30 (8%). Analysis showed 75% of PwID had some biochemical abnormalities requiring further medical attention. The recruitment was influenced by the clinical care set up in implementing the sanctioned ethics. However, where bloods were achieved it proved to be beneficial in identifying hitherto undiagnosed medical problems. While the challenges to gain consent, are considerable, the reasonable adjustments needed to facilitate participation and the immediate clinical benefits where engagement was successful are significant. [ABSTRACT FROM AUTHOR]

Accessible summary It is important for people with intellectual disabilities to be involved in research about their health care., Eight people working in the care sector were interviewed about their views about supporting people with intellectual disabilities to take part in research., Care staff were positive about research but talked about things that may make it difficult for people with intellectual disabilities to take part in research., We suggest some ideas that could help care staff and researchers to support people with intellectual disabilities to take part in research., Abstract Background Despite experiencing health inequalities, people with intellectual disabilities are under-represented in health research. Previous research has identified barriers but has typically focused on under-recruitment to specific studies. This study aimed to explore care staff's attitudes to health research involving people with intellectual disabilities, identify barriers to conducting such research and consider solutions to those barriers. Materials and Methods Eight members of care sector staff took part in a focus group or telephone interview, to explore their views on health research involving people with intellectual disabilities. The transcriptions were analysed using thematic analysis; 50% were double-coded, and the emerging themes were agreed by three researchers. Results Three themes were identified: perceptions of research; barriers to conducting research; solutions to maximise recruitment and project success. Benefits to research were identified, but there were concerns that the time and effort required may outweigh these benefits. Barriers were identified including organisational policy and following the Mental Capacity Act 2005. There was some indication that such barriers may differ according to the severity of intellectual disabilities and the type of care setting. Solutions were proposed that involved greater collaboration between researchers and the care sector, and a more flexible approach to research. Conclusions Care staff are largely supportive of research that is appropriate and relevant to their service users. However, there is a need for clear communication from researchers and flexible recruitment and data collection strategies. This is likely to be facilitated by closer collaboration between researchers and the social care sector. [ABSTRACT FROM AUTHOR]

Minimal general knowledge of the quality of life (QoL) of people with intellectual disabilities and mental health problems (ID/MHP) in Serbia exists at present. The outcomes of the deinstitutionalisation process of these groups, which began in 2015, are very questionable—many individuals have faced challenges, and very few have been deinstitutionalised to date. The purpose of this study was to determine the level of quality of life in the domain of social belonging/community integration, the differences in this domain between persons with ID/MHP living together in institutional residential arrangements and community settings, particularly in supported housing, and the differences in the same domain relating to the service provider (governmental/state‐run or non‐governmental sector). The results of the study indicate that the level of social belonging for this specific population is low, especially on indicators such as belonging to civic or community clubs or organisations, participating in events in the local community, and establishing friendships and emotional relationships. Users of services provided by the non‐governmental sector show slightly higher scores in this domain compared to institutionalised users and users in supported housing. The organisational culture based on institutionalism is transferred to community services, leading to an inability to fulfil the basic principles of proclaimed deinstitutionalisation. The recommendations provided should enable the basing of support services for persons with ID/MHP on the principles of deinstitutionalisation while respecting their rights and facilitating their participation in local communities. [ABSTRACT FROM AUTHOR]

Background Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. Methods This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. Results The core category identified was 'Patient-related considerations when issuing DNAR orders'. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of 'The decision-maker role' was as important as that of 'The decision procedure in an organisational context'. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. Conclusion The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making. [ABSTRACT FROM AUTHOR]

Background Sleep–wake problems and depressive symptoms are common in people with intellectual disabilities (IDs) and are thought to be related to the unstable sleep–wake rhythm in this population. Previously, we showed that after increasing environmental light exposure, mid-sleep and sleep onset advanced, and mood improved over a period of 14 weeks after installing environmental dynamic light installations in the living room of people with IDs. We invited participants of that short-term study to take part in the current study on sleep–wake rhythm, mood and behaviour in older adults with IDs 1 year after installing environmental dynamic light installations in the common living rooms of six group homes. Methods A pre–post study was performed from October 2017 to February 2019. We included 45 participants (63.5 ± 8.5 years, 67% female) from six group home facilities who provided data at baseline (9, 4 and 1 weeks prior to installing light installations), short term (3, 7 and 14 weeks after installing light installations) and 1 year (54 weeks after installing light installations). Wrist activity was measured with actigraphy (GENEActiv) to derive the primary outcome of interdaily stability of sleep–wake rhythms as well as sleep estimates. Mood was measured with the Anxiety, Depression and Mood Scale. Behaviour was measured with the Aberrant Behaviour Checklist. Results One year after installing dynamic lighting, we did not find a change in interdaily stability. Total sleep time decreased (β = −25.40 min; confidence interval: −10.99, −39.82), and sleep onset time was delayed (β = 25.63 min; confidence interval: 11.18, 40.08). No effect on mood or behaviour was found. Conclusions We did not find a change in sleep–wake rhythm, mood or behaviour in older persons with IDs living in care facilities 1 year after installing the light. We did find evidence for a long-term effect on sleep duration and sleep timing. The results have to be interpreted with care as the current study had a limited number of participants. The need for more research on the long-term effects of enhancing environmental light in ID settings is evident. [ABSTRACT FROM AUTHOR]

Background Systematic reviews are important in evaluating evidence concerning the health of people with intellectual disabilities. This study conducts a systematic review to identify strengths and gaps in this evidence. Method Electronic literature searches and email requests identified systematic reviews published in English from 2008 to 2013 on the health or health care of people with intellectual disabilities. Reviews were categorized using ICD-10 chapter headings and information extracted regarding methods, number of studies reviewed and findings. Results Ninety-four reviews were identified: 52 related to ICD-10 Chapter V: Mental or behavioural disorders, 28 to Chapter XXI: Factors influencing health status and contact with services, and 14 related to other chapters or encompassed multiple chapters. Nine reviews were 'empty'. No reviews were found for many ICD-10 chapter headings. Conclusions Systematic reviews are heavily weighted towards mental health, with little coverage of several areas important to the health and mortality of people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background: Mothers of people with intellectual disabilities (IDs) face exceptional challenges and may be more prone to experiencing mental ill‐health compared with mothers of typically developing people. These mental ill‐health problems may differ at different stages of the caregiving trajectory. However, there is no evidence synthesis on this topic. We aimed to systematically review evidence in this area and identify gaps in the existing literature. Method: Prospero registration: CRD42018088197. Medline, Embase, CINAHL and PsycINFO databases were searched. No time limits were applied. Studies were limited to English language. Inclusion criteria were studies of mothers of people with IDs that also included a comparison group of mothers of typically developing/developed children. Data were extracted from selected studies using a structured database. Study selection and quality appraisal were double rated. Where possible, meta‐analyses were performed. Results: Of the retrieved articles, 32/3089 were included, of which 10 reported on anxiety, 21 on depression and 23 on other indicators of mental ill‐health. Overall, previous studies reported that mothers of people with IDs experienced poorer mental health as compared with mothers of typically developing people. Meta‐analyses revealed significant findings for anxiety, depression, parenting stress, emotional burden and common mental disorders, but not for somatic symptoms. However, there was a considerable heterogeneity; hence, interpretation of results should be cautious. Identified gaps included scarce research on mental ill‐health of mothers of adults with IDs at different stages of the caregiving trajectory. Conclusions: There is evidence of poorer mental ill‐health in mothers of people with IDs compared with mothers of typically developing people, but lack of focus on different stages of the caregiving trajectory, methodological inconsistencies between studies and lack of robust studies pose limitations. This highlights the need both for improved support for mothers of people with IDs and for further methodologically robust research. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities (IDs) have very high rates of osteoporosis and fractures, to which their widespread vitamin D deficiency and other factors could contribute. We aimed to assess in people with IDs previously treated for vitamin D deficiency (1) long‐term adherence to vitamin D supplementation and (2) bone mineral density (BMD), as an indicator for risk of fractures, according to vitamin D supplementation and other factors. Method: We recorded height, weight, medical, pharmacological, dietary and lifestyle assessment. Blood sample were taken for vitamin D and related analytes. dual‐energy X‐ray absorptiometry for BMD was performed. Results: Of 51 study participants (mean [standard deviation, SD] age 51.5 [13.6] years, 57% male), 41 (80.4%) were taking vitamin D and 10 were not. Mean [SD] serum vitamin D was 81.3 [21.3] vs. 25.2 [10.2] nmol/L (P < 0.0001), respectively. Thirty‐six participants underwent a dual‐energy X‐ray absorptiometry scan, which showed osteoporosis in 23.7% and osteopenia in 52.6%. Participants on vitamin D had higher BMD than those who were not, a statistically significant difference when confounders (lack of mobility and hypogonadism) were removed. BMD was significantly different according to mobility, particularly in wheelchair users, in whom hip BMD was 33% lower (P < 0.0001) than in participants with normal mobility. Participants still taking vitamin D showed a 6.1% increase in BMD at the spine (P = 0.003) after mean [SD] 7.4 [1.5] years vitamin D treatment. Conclusions: In people with IDs and previous vitamin D deficiency, BMD increases on long‐term vitamin D supplementation. However, additional strategies must be considered for osteoporosis and fracture prevention in this population. [ABSTRACT FROM AUTHOR]

Background This study aimed to develop a self-report measure of paid caregivers' empathy towards people with intellectual disabilities. Materials and Methods Following questionnaire develop-ment, 194 staff working in services for people with intellectual disabilities completed self-report questionnaires, including the new empathy measure. The measure's factor structure and psychometric properties were investigated. Results A three factor solution suggested two key processes in empathizing: experiencing commonality between one's own and people with intellectual disabilities' psychological experiences and efforts to attune to their internal worlds. The final factor represented whether carers find it challenging to empathize. Correlations with beliefs about the self and others in caregiving relationships provided initial evidence of validity, although further investigation is needed. Conclusions The most salient processes in empathizing with people with intellectual disabilities may be different from empathy in other contexts. Establishing determinants of carer empathy may facilitate the development of psychological interventions to promote and enhance this important quality. [ABSTRACT FROM AUTHOR]

Background Epilepsy is highly prevalent in people with intellectual disabilities and is associated with increased mortality and high healthcare usage. This systematic review summarizes research on service responses to people with intellectual disabilities and epilepsy. Method Studies published from 1990 were identified via electronic searches using Medline, Cinahl, Psyc INFO and Web of Science, email requests to researcher networks, and cross-citations. Information extracted from studies was reviewed narratively in relation to identified themes. Results Thirty-five studies met the inclusion criteria. Overall study quality was low, with no RCTs or similarly robust intervention study designs. Access to specialists was inconsistent. The importance of proxies and the need for education regarding epilepsy for staff, carers and people with intellectual disabilities were highlighted. Conclusion There are no methodologically robust studies on service-related interventions for people with intellectual disabilities and epilepsy. Further research on improving service delivery is required to substantiate findings reported here. [ABSTRACT FROM AUTHOR]

Accessible summary We talked to people with intellectual disabilities and their carers about being healthy., Sometimes it was difficult for people with intellectual disabilities to take part in activities that would help keep them healthy., Being active is not just about doing special sports and activities. It can be part of everyday life., People with intellectual disabilities could become more active and be healthier with help from their carers., Abstract Background: The prevalence of obesity, inactivity and related morbidity and mortality is higher amongst people with intellectual disabilities than in the population in general, an issue of global concern. This research examined the perspectives of people with intellectual disabilities and their carers, on exercise and activity. Materials and Methods: Qualitative data were collected via interviews and a focus group with people with intellectual disabilities and their paid and family carers, recruited via state-funded community-based day centres in Scotland. Results: Three barriers hindered service users with intellectual disabilities from regular involvement in physical activity: (i) acceptance of an inactive lifestyle by carers; (ii) restrictions on activity due to paid carer preferences and resource limitations; (iii) communication issues between family carers and paid carers. Barriers were based on assumptions made by paid and family carers, so there is potential to increase activity by changing attitudes, improving communication and reconceptualising activity as integral to everyday living, rather than as additional exercise requiring special resources. Conclusions: Carers should be supported to promote physical activity in a variety of ways to enhance the motivation of service users, to encourage them to engage with physical activity as an integral part of a healthy lifestyle and to transfer this to their lives beyond day care. [ABSTRACT FROM AUTHOR]

Background: Support staff of adults with intellectual disability (ID) play an important role in promoting independence in home and community settings. However, little is known about the types of behaviours staff should use to promote independence and instruments that assess such behaviour do not yet exist. The aim of this study was therefore to develop and initially validate a reliable questionnaire that measures the degree to which support staff display behaviours that promote independence in people with ID. Method: The Leiden Independence Questionnaire for Support Staff (LIQSS) was constructed to measure the extent to which support staff promote independence in people with ID. The LIQSS was completed by 142 staff members working with people with ID. For the psychometric evaluation of the LIQSS, a principal component analysis was performed with an oblique rotation in all items. Next, the principal component analysis was performed with a forced three‐component extraction, and three sub‐scales were computed. To assess internal consistency, Cronbach's α was calculated for each of the sub‐scales. Results: The LIQSS was found to consist of three internally consistent (Cronbach's α was respectively 0.92, 0.79 and 0.76) and meaningful components: (1) communication, agreements and coordination; (2) positive encouragement and tailoring; and (3) supporting independent performance. The final 22 items had factor loadings between 0.44 and 0.91 on their corresponding component and a minimal difference in loading to the other factors of 0.20. Conclusions: The LIQSS appears to be an instrument with positive face validity and reliability (internal consistency) that assesses the degree to which support staff promote independence in people with ID. To increase the instrument's value for both scientific research and clinical practice, studies should focus on the further validation of the LIQSS. [ABSTRACT FROM AUTHOR]