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Introduction: People with intellectual disabilities experience health inequalities at a greater level than their non-disabled peers. Notably, while general health status is starting to receive some attention, the reproductive health and rights of people with intellectual disabilities continue to be understudied from a policy and research perspective. The objective of this review is to elucidate the complex interplay between individual, social and structural factors that influence reproductive health outcomes for this population. The findings will be used to develop a theoretical framework to explain how and why reproductive health inequalities persist for people with intellectual disabilities and to identify gaps in the knowledge base to inform future research on this topic., Methods and Analysis: A six-stage meta-narrative review will be undertaken to synthesise the available evidence that seeks to explain the reproductive health inequalities experienced by people with intellectual disabilities and the factors contributing to these inequalities. The protocol for this review was developed in accordance with the Realist And MEta-narrative Evidence Syntheses: Evolving Standards publication standards, and the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocol guideline is completed to ensure transparency., Ethics and Dissemination: This meta-narrative review protocol does not require formal ethics review because it will be based on published studies. The findings from this review will be submitted to a peer-reviewed journal and presented at national and international conferences. We will also produce our findings in a range of accessible and easy-to-read formats., Prospero Registration Number: CRD42024495199., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Cancer prevention is a crucial public health strategy, with 30-50% of cancers being preventable through early screening and lifestyle modifications. However, people with intellectual disabilities (PWID) face significant barriers to cancer prevention services, leading to delayed diagnoses and poorer outcomes. Family caregivers play a key role in bridging the healthcare access gaps for PWID, but there is limited research exploring their perspectives on cancer prevention. This study examined the needs, challenges, and strategies family caregivers employ in cancer prevention for PWID, framed within Bronfenbrenner's ecological systems theory. Methods: A mixed methods sequential explanatory design was used. Quantitative data were collected through a structured questionnaire from 41 caregivers of PWID, followed by qualitative semi-structured interviews with 15 caregivers to explore the quantitative findings further. Data were analysed using descriptive statistics, chi-square tests, and thematic content analysis. Results: The study revealed that 75.6% of caregivers had not received information about cancer prevention for PWID, and 63.4% did not regularly coordinate cancer screenings. Barriers identified included a lack of accessible information, logistical challenges, and emotional strain. However, 80.5% of caregivers expressed a need for additional training to support their roles in cancer prevention. Qualitative findings highlighted four key themes: promoting a healthy lifestyle, access to healthcare services, health literacy, and psychosocial support. Conclusions: The findings emphasise the need for tailored cancer prevention strategies and educational resources for caregivers of PWID. Addressing these gaps requires systemic changes in healthcare practices, better coordination of services, and enhanced support for caregivers to reduce the barriers to cancer prevention for PWID.

Background: Adults with intellectual disability experience increased rates of mental health disorders and adverse mental health outcomes., Aim: Explore childhood risk factors associated with adverse mental health outcomes during adulthood as defined by high cost of care, use of psychotropic medication without a severe mental illness and psychiatric hospital admissions., Method: Data on 137 adults with intellectual disability were collected through an intellectual disability community service in an inner London borough. Childhood modifiable and non-modifiable risk factors were extracted from records to map onto variables identified as potential risk factors. Logistic and linear regression models were employed to analyse their associations with adverse outcomes., Results: We showed that the co-occurrence of intellectual disability with autism spectrum disorder and/or attention-deficit hyperactivity disorder (ADHD) were associated with psychotropic medication use and high-cost care packages. However, when challenging behaviour during childhood was added, ADHD and autism spectrum disorder were no longer significant and challenging behaviour better explained medication prescribing and higher cost care. In addition, the severity of intellectual disability was associated with higher cost care packages. Ethnicity (Black and mixed) also predicted higher cost of care., Conclusions: Challenging behaviour during childhood emerged as a critical variable affecting outcomes in young adulthood and mediated the association between adult adverse mental health outcomes and co-occurring neurodevelopmental conditions, that is, ADHD and autism. These findings emphasise the need for effective early intervention strategies to address challenging behaviour during childhood. Such interventions for challenging behaviour will need to take into consideration autism and ADHD.

Background: Acceptance of health care professionals is of paramount importance for the uptake and implementation of eHealth. The Unified Theory of Acceptance and Use of Technology (UTAUT) model is a widely used framework for studying health care professionals' acceptance and actual use of eHealth among general client populations. However, there is limited understanding of the eHealth acceptance of health care professionals working with people with intellectual disabilities (ID)., Objective: This study aimed to explore the applicability of the UTAUT model toward understanding the acceptance, intention to use, and actual use of eHealth among support staff and therapists working with people with ID., Methods: A total of 2 cross-sectional survey studies were conducted among health care professionals from 5 health care organizations for people with ID in the Netherlands in 2018 (n=311) and in 2021 during the COVID-19 pandemic (n=326). In addition to confirmatory and exploratory factor analyses to evaluate both the original UTAUT model and an extended version, descriptive analysis was used to explore participants' characteristics, acceptance levels, and eHealth usage. Moderator analysis and multiple regression analysis were also used., Results: A confirmatory factor analysis indicated a poor fit for both the original 4-factor UTAUT model and the extended version. An exploratory factor analysis was then conducted, resulting in a more satisfactory 5-factor model after removing 1 item with a factor loading <.40. Internal consistency of the 5 factors ranged from acceptable to good (Cronbach α=.76-.85). Collectively, all factors predicted the intention to use eHealth in 2018 (R 2 =0.47; F 5,305 =54.885; P<.001) and in 2021 (R 2 =0.43; F 5,320 =49.32; P<.001). Participants scored moderately on all 5 acceptance factors in both 2018 and 2021. Moderator analysis indicated that age and voluntariness influence the relationship between factors that determined acceptance and intention to use eHealth., Conclusions: The findings from 2 cross-sectional studies conducted in 2018 and 2021, using an extended UTAUT model, gave a deeper understanding of eHealth acceptance among health care professionals who work with people with ID., (©Cathelijn Oudshoorn, Noud Frielink, Heleen Riper, Petri Embregts. Originally published in JMIR Formative Research (https://formative.jmir.org), 12.11.2024.)

Background: People with intellectual disabilities in residential or outpatient facilities for people with disabilities run the risk of being digitally excluded by not having opportunities for taking advantage of digitalization possibilities., Objective: We aimed to investigate how disability caregivers and managers describe barriers and facilitating factors to implement and adopt mainstream technology for people with intellectual disabilities in residential or outpatient facilities and how the competencies and capabilities of the caregivers are assessed in the process., Methods: For this reason, we conducted a multiple-methods study applying the nonadoption, abandonment, scale-up, spread, and sustainability framework., Results: As a result, we identified barriers and facilitators across the nonadoption, abandonment, scale-up, spread, and sustainability framework domains: (1) condition-people with intellectual disabilities are a diverse group, where the individual condition of the person and, for example, their communication skills were seen as a prerequisite for implementing mainstream technologies; (2) technology-the extent to which mainstream technology fits the individual needs and demands contributed to the implementation process; (3) value proposition-communication was seen as a life area where mainstream technology can add value; (4) adopters-the caregivers needed competencies and capabilities to accompany their care recipients' technology use; (5) organization-missing legal regulations and lack of personnel resources were described as barriers; (6) wider context-funding opportunities were seen as unclear in disability services as mainstream technologies could not be financed as participation benefits; (7) embedding and adaptation over time-the COVID-19 pandemic forced facilities to become digitalized to some extent., Conclusions: The disability services investigated were still in need of standardized procedures to promote the digital participation of their residents., (©Christian Menschik, Christophe Kunze, Gregor Renner, Theresa Etges. Originally published in JMIR Rehabilitation and Assistive Technology (https://rehab.jmir.org), 05.11.2024.)

Background: Violence against people with intellectual disabilities is unfortunately a reality all over the world, as they are one of the populations most vulnerable to various forms of aggression. Assertive prevention and control measures are crucial to tackle and reduce this problem. The aim of this study was to map and summarize the main measures for preventing and controlling domestic violence against people with intellectual disabilities.  METHODS: This was a scoping review conducted in accordance with the JBI guidelines. The databases consulted were: National Library of Medicine (PubMed); Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science; Excerpta Medica DataBASE (EMBASE); Latin American and Caribbean Health Sciences Literature (LILACS) and SCOPUS. Studies included in this review reported on strategies to address domestic violence against people with intellectual disabilities, published in  the last ten years, in Portuguese, Spanish or English., Results: A total of 11 studies were included in this review. Six studies had high methodological quality and five had moderate. Cognitive-behavioral intervention programs, educational  technologies and/or auxiliary tools, along with the full participation of people with intellectual disabilities in domestic violence prevention measures are appropriate strategies for dealing with this issue., Conclusion: Domestic violence against people with intellectual disabilities is relatively unexplored in the health-field scientific literature. Prevention and control measures should be developed with the active involvement of people with intellectual disabilities, generating engagement and knowledge. Preventive measures should be adapted to the personal context and conditions of individuals with special needs, such as those with persistent or chronic mental disorders., (© 2024. The Author(s).)

Introduction: There is growing recognition that healthcare inequalities faced by people with intellectual disabilities extend to their experiences at the end of life, resulting in calls for more inclusive research to help address these inequities. Our study aimed to address this through the co-design of a toolkit for supporting end-of-life care planning with people with intellectual disabilities. To inform the co-design process, we undertook an evidence review to identify existing tools, resources and approaches that were already being used in practice., Methods: Our evidence review comprised three components: (i) a rapid scoping review of the academic literature, (ii) a desk-based search of the grey literature and (iii) an online survey to capture unpublished resources that were distributed to services, professionals, third-sector organisations and family members. A longlist of existing materials was appraised using an adapted version of the AGREE II instrument, resulting in a shortlist that was shared with the co-design team., Results: The evidence review played a critical role in the co-design of a new toolkit of end-of-life care resources for people with intellectual disabilities. However, AGREE II proved to be limited for our purposes., Conclusions: The survey was particularly useful in helping us identify resources, tools and approaches in current use. We identified evidence review processes that served to support co-design team activities and elements that were more problematic. We argue that evidence review practices might be enhanced to better aid co-design activities in health and care research, particularly for studies involving people with intellectual disabilities., Patient or Public Contribution: This article reflects on an evidence review that was conducted as part of The Victoria and Stuart Project. People with intellectual disabilities were deeply involved at every stage of project design, delivery and dissemination. The project employed people with intellectual disabilities as members of the core research team. People with intellectual disabilities and family carers were members of the project co-design team and the project Advisory Group. The evidence review process itself was led by academic members of the research team with contributions from colleagues with intellectual disabilities via the Advisory Group and core research team. The findings from the evidence review were used by the co-design team to inform the development of an end-of-life care planning toolkit for people with intellectual disabilities., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: Relationships and sexuality education (RSE) programmes are widely taught in schools, however for children and young people with intellectual disabilities, these programmes appear to be limited regarding information on relationships, informed choices and decision making. The purpose of this study was to seek the views and understanding of children and young people with intellectual disabilities, and those involved in their care and education, to identify best practice and approaches to the delivery on relationships and sexuality education., Methods: This study used a qualitative design with 37 pupils from five special schools from across the United Kingdom (UK) participating. In-depth semi-structured interviews were held online, or in person. All interviews were recorded and transcribed verbatim. Transcripts were anonymised, assigned a pseudonym and subjected to inductive thematic analysis., Findings: Four themes emerged from the data: (i) enthusiasm and inquisitiveness to acquire knowledge; (ii) dynamics of positive friendships; (iii) experiences and understanding of supportive relationships and sexuality; and (iv) valuing the exchange of knowledge and information. The findings highlight that children and young people with intellectual disabilities want education, support and information on matters relating to their relationships and sexuality., Conclusions: This is the largest study to date providing a voice to children and young people with intellectual disabilities regarding their relationships and sexuality. While special schools provide relationships and sexuality education, there is a requirement for a programme and resources specific to the needs of pupils with intellectual disabilities to be developed and evaluated. Such education should continue beyond school and be embedded in adult services., (© 2024. The Author(s).)

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., (© 2024 The Author(s). European Journal of Sport Science published by Wiley‐VCH GmbH on behalf of European College of Sport Science.)

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, 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., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: There is a critical need for the development of dependable and valid anxiety assessment tools suitable for people with moderate to severe intellectual disabilities, particularly those who speak few or no words. Distinguishing anxiety from distress caused by physical discomfort (pain) or characteristics associated with autism, prevalent in this population, necessitates specialised assessment tools. This study (a) developed a parent-report anxiety questionnaire tailored for individuals with severe to moderate intellectual disabilities, potentially with a co-diagnosis of autism, and (b) evaluated the psychometric attributes of this novel measure., Methods: A comprehensive approach involving literature reviews, inspection of existing tools, and interviews with clinicians and parents guided the creation of the Clinical Anxiety Scale for People with Intellectual Disabilities. The tool was completed by parents or caregivers (N = 311) reporting on individuals aged 4 or older with intellectual disabilities., Results: Exploratory factor analysis indicated a four-factor structure encompassing anxiety, pain, low energy/withdrawal, and consolability. The anxiety factor explained the most variance in scores (26.3%). The anxiety, pain, low energy/withdrawal subscales demonstrated robust internal consistency (α = 0.81-0.92), and convergent, divergent, and discriminant validity. Robustness of these subscales was further evidenced by test-retest reliability (ICC = 0.79-0.88) and inter-rater reliability (ICC = 0.64-0.71). Subgroup analyses consistently demonstrated strong psychometric properties among individuals diagnosed with non-syndromic autism (N = 98), children (N = 135), adults (N = 175), and across diverse communication abilities within the sample. Moreover, individuals diagnosed with both autism and anxiety exhibited significantly higher scores on the anxiety subscale compared to those without an anxiety diagnosis, while showing no difference in autism characteristic scores., Conclusions: The findings indicate that the Clinical Anxiety Scale for People with Intellectual Disabilities is a promising measure for use across diverse diagnostic groups, varying communication abilities, and with people with moderate to severe intellectual disabilities., (© 2024. The Author(s).)

People with intellectual disabilities (IDs) often present with challenging behaviors (CBs) mostly due to inappropriate environments and mental and physical disorders. Integrative care is recommended to address CBs. However, in clinical practice, psychotropic drugs are often prescribed off-label for CBs, although the effectiveness is unclear, and side effects frequently occur. We conducted a cluster-randomized controlled study to investigate the effect of integrative care provided by a collaboration of an ID specialized mental healthcare team and participants' own ID service providers' care team on reducing CBs and inappropriate off-label psychotropic drug prescriptions compared with care as usual. Participants ( N = 33, aged 19-81 years) had a moderate, severe, or profound intellectual disability and used off-label psychotropic drugs. The primary outcome measures were the Aberrant Behavior Checklist and the total dose of psychotropic drug prescriptions. At the study endpoint of 40 weeks, we found no effect of the intervention on the total ABC score and on the total dose of psychotropic drug prescriptions. In the intervention group, however, the psychotropic drug dose decreased significantly, while CBs did not change. The small sample size and not-completed interventions due to organizational problems may have affected our findings. This study illustrates the difficulties in the implementation of integrative care.

This systematic literature review examines the evidence base on the effectiveness of online programmes on the mental health and well-being of family carers of people with intellectual disabilities. Databases (ERIC, Medline, PsycINFO and CINAHL) were searched for intervention studies that considered online interventions for family carers of people with intellectual disabilities. Data were extracted using standardised data extraction tools. Bias was assessed using the Cochrane risk of bias tool for randomised trials (RoB 2). Screening, extraction and assessment of bias were completed independently by two members of the research team. Given the low number of included studies and different outcomes assessed within them, it was not possible to conduct a meta-analysis; therefore, data are presented narratively. Two studies met the criteria to be included in the review. Both studies utilised a feasibility randomised controlled trial methodology. One study found a significant decrease in parental stress, while the other found a significant increase in psychological well-being. Caution must be taken in drawing firm conclusions, given the small sample sizes and low retention rates in both studies. Online programmes seem to offer potential benefits to family carers of people with intellectual disabilities. However, further investigation is needed to examine these programmes, adopting a collaborative approach with family carers.

Introduction: Interpersonal violence is a phenomenon that can occur with different people and conditions. However, people with intellectual disabilities have increased vulnerability to this problem, with potential risks to their health and well-being. The aim of this study was to identify the sociodemographic characteristics of people with disabilities who have been victims of interpersonal violence, the profile of the perpetrators and the measures taken after the victims have been cared for., Methods: This is an exploratory, descriptive, cross-sectional study using the Interpersonal Violence Notification Forms entered into the Brazilian Ministry of Health's Notifiable Diseases Information System. The city of São Paulo was chosen as the setting because it is the largest city in Latin America and has a faster data processing system than other cities. The period covered notifications made between 2016 and 2022. The information was collected between October and November 2023 and a univariate statistical analysis was carried out. Fisher's exact test was used, with a significance level of 5% (α = 0.05)., Results: There were 4,603 notifications against people with intellectual disabilities in the period. The forms of physical violence, neglect/abandonment and psychological/moral violence were more frequent in the 15-19 age group, while sexual violence was more frequent in the 10-14 age group (p < 0.001). The sex most often attacked was female in all the forms investigated (p < 0.001) and the skin colors of the most victimized people were black and/or brown, except in cases of neglect/abandonment (p = 0.058). Most of the victims had little schooling (p = 0.012). The aggressions were committed by one person (p < 0.001), known or related to the victim, such as mother or father, except in cases of sexual violence, where strangers were the main perpetrators (p < 0.001). The sex of the perpetrator was male, except in cases of neglect and/or abandonment (p < 0.001), and the age was between 25 and 29 (p = 0.004). In cases of sexual violence, rape was the most frequent and the procedures carried out were blood collection followed by prophylaxis for Sexually Transmitted Infections (STIs) were the main procedures carried out by health professionals (p = 0.004). The majority of referrals made after receiving care were to the health and social assistance network, with few referrals to bodies such as the human rights reference center, guardianship council and police stations (p < 0.001)., Conclusion: People with intellectual disabilities are highly vulnerable to the forms of violence studied, especially children and adolescents, black or brown, with low levels of education. The perpetrators are usually close people, male and older than the victims. The referrals made by health professionals did not prioritize the victim's safety and the guarantee of human rights. Lines of care for the health of victims of violence should be implemented, taking into account special aspects, such as people with intellectual disabilities, whose search for help can be difficult., (© 2024. The Author(s).)

Background: Adaptive behavior is an important characteristic of people with intellectual disabilities, and it has been associated with a person's performance in social and work contexts. Indeed, adaptive behavior denotes what a person does independently, without help, support, reminders, or prompts. In Peru, available measures of adaptive behavior are commercial; thus, there is a need for an open-access tool to assess the adaptive behavior of people with intellectual disabilities. For this reason, the aim of the study was to design and develop a new Adaptive Behavior Test Battery for people from 13 to 60 years old with intellectual disabilities who have an interest in being part of the economically active population., Methods: A cross-sectional design was defined, starting with a qualitative approach to designing and constructing the item pool for the test battery. Then, quantitative indexes Aiken's V for content validity and Krippendorff's alpha for inter-observer reliability were estimated, resulting in a first version of the three subscales that comprised the test battery. The initial versions were tested on a sample of 566 persons with intellectual disabilities from two regions of Peru: Lima (Coast) and San Martín (Jungle). The internal structure was analyzed under a factor analysis approach, along with internal consistency measures of reliability. Further analyses of invariance regarding gender, region, and age were carried out., Results: Three observer subscales were proposed: Daily living activities (11 items), Instrumental skills (4 items), and Communication (9 items). All subscales showed excellent psychometric properties denoted by the Aiken's V coefficient, Krippendorff's alpha, factor analysis, internal consistency analysis, and invariance analyses., Conclusion: The developed a new Adaptive Behavior Test Battery is a useful tool for the measurement of adaptive behavior and the monitoring of social and labor inclusion programs for people with intellectual disabilities., Competing Interests: The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Alicia Boluarte Carbajal reports financial support was provided by National Council of Science Technology and Technology Innovation., (© 2024 The Authors. Published by Elsevier Ltd.)

Individuals with intellectual disabilities have a shorter lifespan and significantly higher prevalence of conditions such as hypertension and cardiovascular diseases than healthy individuals. Thus, assessing the elements that contribute to their physical fitness is crucial. This cross-sectional study examined the relationship between the blood pressure and physical fitness of people with intellectual disabilities in South Korea, considering differences across sexes, age groups, physical attributes, and disability levels. It used data from 8502 individuals with intellectual disabilities aged 20-59 years who participated in a survey of a National Fitness Standard Center (NFSC) between 2018 and 2021. A series of t -tests, one-way analysis of variance, logistic regression, and the four-quartile method were used for data analyses. The results showed differences in physical fitness levels between men and women considering all aspects except for BMI (Body Mass Index), with men showing higher blood pressure levels. Lower grip strength, lower PEI (physical efficiency index) scores, and higher BMI were associated with increased blood pressure. Additionally, individuals with higher levels of disability tended to have lower levels of physical fitness, while higher physical fitness levels were associated with lower blood pressure. Therefore, low fitness levels and hypertension risk may be important health indicators for people with intellectual disabilities.

Background: After the rapid implementation of digital health services during the COVID-19 pandemic, a paucity of research exists about the suitability of remote consulting in people with intellectual disabilities and their carers, particularly for neuropsychiatric reviews., Aim: This study examines when remote neuropsychiatric routine consulting is suitable for this population., Method: A survey was conducted of people with intellectual disabilities and their carers, examining their preference between face-to-face and video consultations for ongoing neuropsychiatric reviews within a rural countywide intellectual disability service in Cornwall, England (population: 538 000). The survey was sent to all adults with intellectual disabilities open to the service on 30 July 2022, closing on 30 September 2022. Participants were asked to provide responses on 11 items predesigned and co-produced between clinicians and experts by experience. The entire service caseload of people had White ethnicity, reflecting the ethnic demographics of Cornwall. Responses received without consent were excluded from the study dataset., Results: Of 271 eligible participants, 119 responses were received, 104 of whom consented to having their anonymised data used for research analysis. There were no significant differences between preferences and age and gender variables. There was no statistically significant difference regarding preference for the reintroduction of face-to-face appointments (52.0%) compared with video consultations (48.0%). Travel distance (>10 miles) to the clinical setting was important but did not outweigh benefits for those preferring a face-to-face appointment., Conclusions: This study offers insights into the factors that influence preferences about what type of neuropsychiatric appointment is most suitable for people with intellectual disabilities.

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., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Previous research has shown that people with intellectual disabilities have limited sexual knowledge, which can be essential for developing positive sexuality. This study aimed to check the validity and reliability of an assessment tool (SexKunn) for measuring the sexual knowledge of people with intellectual disabilities in Norway. Further, we aimed to identify potential knowledge gaps among the participants and highlight their potential impact., Methods: 37 people with intellectual disabilities completed one assessment. 20 participants then completed a retest. Clinicians' (n=23) views on the assessment tool were measured to obtain face validity. Positive and negative agreement analysis was used to identify potential dimensions in the data., Results: A weighted Cohen's kappa for the test and retest of the overall scores was considered to be substantial. The clinicians described an acceptable face validity regarding high positive value scores and low negative burden scores. They also suggested improvements. The study identified that the participants lacked knowledge about female genitals, hygiene, appropriate touching/sexual acts with friends/intimate partners, and contraception., Conclusions: The SexKunn is a feasible assessment tool to measure sexual knowledge in people with intellectual disabilities. A lack of sexual knowledge of people with intellectual disabilities may violate their sexual rights., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Svae, Zachariassen, Fjeld and Søndenaa.)

Background: One-third to half of people with intellectual disabilities suffer from chronic constipation (defined as two or fewer bowel movements weekly or taking regular laxatives three or more times weekly), a cause of significant morbidity and premature mortality. Research on risk factors associated with constipation is limited., Aims: To enumerate risk factors associated with constipation in this population., Method: A questionnaire was developed on possible risk factors for constipation. The questionnaire was sent to carers of people with intellectual disabilities on the case-loads of four specialist intellectual disability services in England. Data analysis focused on descriptively summarising responses and comparing those reported with and without constipation., Results: Of the 181 people with intellectual disabilities whose carers returned the questionnaire, 42% reported chronic constipation. Constipation was significantly associated with more severe intellectual disability, dysphagia, cerebral palsy, poor mobility, polypharmacy including antipsychotics and antiseizure medication, and the need for greater toileting support. There were no associations with age or gender., Conclusions: People with intellectual disabilities may be more vulnerable to chronic constipation if they are more severely intellectually disabled. The associations of constipation with dysphagia, cerebral palsy, poor mobility and the need for greater toileting support suggests people with intellectual disabilities with significant physical disabilities are more at risk. People with the above disabilities need closer monitoring of their bowel health. Reducing medication to the minimum necessary may reduce the risk of constipation and is a modifiable risk factor that it is important to monitor. By screening patients using the constipation questionnaire, individualised bowel care plans could be implemented.

Background: Responsible digital care refers to any intentional systematic effort designed to increase the likelihood of a digital care technology developed through ethical decision-making, being socially responsible and aligned with the values and well-being of those impacted by it., Objective: We aimed to present examples of action opportunities for (1) designing "technology"; (2) shaping the "context" of use; and (3) adjusting the behavior of "users" to guide responsible digital care for people with intellectual disabilities., Methods: Three cases were considered: (1) design of a web application to support the preparation of meals for groups of people with intellectual disabilities, (2) implementation of an app to help people with intellectual disabilities regulate their stress independently, and (3) implementation of a social robot to stimulate interaction and physical activity among people with intellectual disabilities. Overall, 26 stakeholders participated in 3 multistakeholder workshops (case 1: 10/26, 38%; case 2: 10/26, 38%; case 3: 6/26, 23%) based on the "guidance ethics approach." We identified stakeholders' values based on bottom-up exploration of experienced and expected effects of using the technology, and we formulated action opportunities for these values in the specific context of use. Qualitative data were analyzed thematically., Results: Overall, 232 effects, 33 values, and 156 action opportunities were collected. General and case-specific themes were identified. Important stakeholder values included quality of care, autonomy, efficiency, health, enjoyment, reliability, and privacy. Both positive and negative effects could underlie stakeholders' values and influence the development of action opportunities. Action opportunities comprised the following: (1) technology: development of the technology (eg, user experience and customization), technology input (eg, recipes for meals, intervention options for reducing stress, and activities), and technology output (eg, storage and use of data); (2) context: guidelines, training and support, policy or agreements, and adjusting the physical environment in which the technology is used; and (3) users: integrating the technology into daily care practice, by diminishing (eg, "letting go" to increase the autonomy of people with intellectual disabilities), retaining (eg, face-to-face contact), and adding (eg, evaluation moments) certain behaviors of care professionals., Conclusions: This is the first study to provide insight into responsible digital care for people with intellectual disabilities by means of bottom-up exploration of action opportunities to take account of stakeholders' values in designing technology, shaping the context of use, and adjusting the behavior of users. Although part of the findings may be generalized, case-specific insights and a complementary top-down approach (eg, predefined ethical frameworks) are essential. The findings represent a part of an ethical discourse that requires follow-up to meet the dynamism of stakeholders' values and further develop and implement action opportunities to achieve socially desirable, ethically acceptable, and sustainable digital care that improves the lives of people with intellectual disabilities., (©Nienke M Siebelink, Kirstin N van Dam, Dirk R M Lukkien, Brigitte Boon, Merlijn Smits, Agnes van der Poel. Originally published in JMIR Mental Health (https://mental.jmir.org), 28.02.2024.)

Background: The aim of the study was to identify the variables of the internal compensatory mechanisms that differentiate the body build and posture of people with Down syndrome (DS) from the intellectual disability (ID) population. It was assumed that gaining knowledge in the abovementioned aspect will allow for a better understanding of the limitation of the kinesthetic abilities of people with ID and DS and simultaneously enable to optimize the process of planning and interventions to improve physical activity in this population with the adequate use of theirs strengths in the biomechanical and morphofunctional systems., Methods: The methodology of this systematic review was developed according to the PRISMA guidelines. A search of PubMed, EBSCO, Scopus databases was conducted to identify all studies on DS/ID and the body build and posture from 2003 to 2023., Results: 395 articles were assessed to determine eligibility, while 22 studies met the inclusion criteria and were subjected to detailed analysis and assessment of their methodological quality. The differentiation of the body build and posture in DS population can be induced by both internal and external compensatory mechanisms. It is difficult to confirm the direct effect of the intrinsic variables that impact the body build and posture in the ID population, excluding people with DS., Conclusions: Compared to other ID, the intrinsic differences in the body build and posture in DS individuals were induced by gender, age, and level of ID. The tendency for diversity between DS and other ID populations in body build and posture may be determined by the presence of the third copy of chromosome 21 in DS group. Internal compensatory processes may be induced mainly by abnormalities in the structure of the cervical vertebrae and feet. IQ should not be used as the only variable that identifies the population of people with ID., (© 2024. The Author(s).)

Background: Family carers play a crucial role in supporting the health and well-being of people with intellectual disabilities. Given their role and responsibilities, many family carers experience significant and ongoing stress and mental health difficulties. Programmes and interventions which provide training and support to family carers have been shown to have a positive impact on levels of stress and quality of life. However, these are often face to face which can create barriers to full participation. Online interventions have been shown to offer flexibility in delivery compared with traditional face-to-face approaches. The primary objective of this study is to determine the feasibility of delivering the Carers-ID online intervention, while the secondary outcome is improved mental health in family carers of people with intellectual disabilities., Methods: Family carers (n = 120) will be randomised to receive the intervention (n = 60) or assigned to a wait-list control (n = 60) group. The intervention ( www.Carers-ID.com ) consists of 14 modules which cover topics including the following: promoting resilience, providing peer support, reducing anxiety, managing stress, accessing local supports and managing family conflict and information for siblings who are carers. The intervention has been co-produced with voluntary sector organisations and family carers and tested for acceptability. Primary outcomes for this study include acceptability and feasibility of the outcome measures, recruitment, participation and retention rates and effect sizes. Secondary outcomes will be completed at three time points (baseline, following intervention completion and 3 months after completion). These include the following: the Depression, Anxiety and Stress Scale, the Warwick-Edinburgh Mental Well-being Scale, the Resilience Scale and the Social Connectedness Scale Revised. Participants (n = 12) who have taken part in the intervention arm of the research will be invited to participate in semi-structured interviews as part of the process evaluation., Discussion: The Carers-ID intervention provides an online resource for family carers to support their mental health and well-being and promote their resilience. It represents an affordable and accessible means of delivering such support. Testing the feasibility of the intervention and related trial procedures is required to determine whether a full-scale randomised controlled trial to evaluate the intervention's effectiveness is warranted., Trial Registration: ClinicalTrials.gov : NCT05737823., (© 2024. The Author(s).)

This study aimed to investigate the disaster or emergency coping skills of people with intellectual disabilities and the factors that affect these skills. The panel survey on the lives of people with disabilities from the 3rd dataset (2020) of the Korea Development Institute for the Disabled was used for this analysis. Response data from 275 people with intellectual disabilities aged 10 years or older were analyzed. Differences between disaster or emergency coping skill levels and sub-questions of skills, according to the general characteristics of people with intellectual disabilities, were identified, as well as factors affecting the level of disaster or emergency coping skills. The results show that the coping skills level was low; among the sub-questions, the use of fire extinguishers and awareness of the location of fire extinguishers or emergency bells in the event of a disaster or emergency were also low. Factors affecting the level of coping skills were found to be the level of education and experience in comprehensive disaster coping training. The results of this study suggest that training and education on disaster or emergency coping skills for people with intellectual disabilities are necessary and that programs should be developed for this purpose.

Hypertension is one critical health issue causing cardiovascular diseases. There has been a common concern among health researchers that the prevalence of hypertension, known as high blood pressure, has been more frequently observed among people with intellectual disabilities, compared to the general population. Thus, this study aims to identify which health-related physical fitness and body composition factors are significantly related to both systolic and diastolic blood pressures among people with intellectual disabilities. The data from 2180 people with intellectual disability who conducted the physical fitness tests from 2019 to 2020 were used for this study. Four physical fitness tests (i.e., 3-min step, grip strength, sit-up, and sit and reach) and two body compositions (i.e., body mass index and body fat %) used as predictors, and two blood pressures (i.e., systolic blood pressure and diastolic blood pressure) were used as outcome variables. A regression analysis was performed to examine the proposed associations. The regression test revealed that 3-min step, body mass index, and body fat % were significantly associated with both systolic blood pressure and diastolic body pressure. This research contributes to our understanding of the roles of body compositions and aerobic endurance in preventing hypertension among people with intellectual disability., (© 2024. The Author(s).)

Introduction: People with intellectual disabilities (ID) are at increased risk for developing Post Traumatic Stress Disorder (PTSD). Emerging evidence indicates that Eye Movement Desensitization and Reprocessing (EMDR) therapy is feasible and potentially effective for this group. However, communication, cognition, stress regulation, and attachment difficulties may interfere with the EMDR process. Adaptation of the EMDR protocol seems therefore required for this population., Aim: This review aims to systematically identify and categorize the difficulties in applying EMDR to people with ID and the adaptations made by therapists to overcome these challenges., Methods: A literature search was performed in May 2023. Article selection was based on inclusion and exclusion criteria and quality appraisal., Results: After screening, 13 articles remained for further review. The identified difficulties and adaptations were categorized into the three domains of adaptive functioning (i.e., conceptual, social, and practical functioning). Considerable difficulties in applying the EMDR protocol for this group were reported. The adaptations made by therapists to overcome these difficulties were highly variable. They could be divided into three main categories: adaptions in EMDR delivery (e.g., tuning to the developmental level of the client, simplifying language, decreasing pace), involvement of others (e.g., involving family or support staff during or in between sessions), and the therapeutic relationship (e.g., taking more time, supportive attitude)., Discussion: The variability of the number of mentioned difficulties and adaptations per study seems to be partly related to the specific EMDR protocol that was used. In particular, when the Shapiro adult protocol was administered, relatively more detailed difficulties and adaptations were described than in publications based on derived existing versions of an EMDR protocol for children and adolescents. A probable explanation is that already embedded modifications in these protocols facilitate the needed attunement to the client's level of functioning., Practical Implications: The authors of this review suggest that EMDR protocols for children and adolescents could be adapted for people with an intellectual disability. Further research should focus on the involvement of trusted others in EMDR therapy for people with ID and the therapeutic relationship from an attachment and relational-based perspective., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Schipper-Eindhoven, de Knegt, Mevissen, van Loon, de Vries, Zhuniq and Bekker.)

The barriers faced by people with intellectual disabilities are many. One of the areas in which many problems have been identified is the sexual domain. This descriptive study aims to analyze the attitudes of the family environment, professional carers, and the general population toward their sexuality. A cross-sectional descriptive study was carried out between 2022 and 2023, using convenience sampling among family members and carers from different centers working with people with intellectual disabilities in Spain, and among the general population not related to people with intellectual disabilities. A total of 583 responses were received and significant differences were found for all variables, with the variables related to family or work proximity being those that provided the most significant and relevant results. It was observed that the male sex has a more paternalistic attitude and that in rural areas there is a more permissive attitude towards the sexuality of people with intellectual disabilities. People who work with people with disabilities have more positive attitudes towards this group, while direct relatives have more paternalistic attitudes. Nursing care in the community and specialized centers should be based on an adequate therapeutic relationship and personalized care.

Background: Caring for people with intellectual disabilities can be a challenging task, but it can also bring about positive experiences for family caregivers. The present study aimed to explore these positive experiences and shed light on the ways in which family caregivers of people with intellectual disabilities can find meaning and fulfillment in their roles., Methods: This qualitative study used conventional content analysis to explore the positive experiences of family caregivers of people with intellectual disabilities. Sixteen family caregivers from rural areas in southeastern Iran were purposively selected to participate in the study. Semi-structured in-depth interviews were conducted to collect data. The interviews were audio-recorded and transcribed verbatim. The data were analyzed using the method proposed by Graneheim and Lundman., Results: The data analysis resulted in the emergence of a single theme, which was achievements of providing care for people with intellectual disabilities. This theme was comprised of four main categories: a new outlook on life, family caregivers' peace of mind, strengthening of family ties, and improvement of social status. The provision of care for people with intellectual disabilities created positive changes, affecting family functioning and care provision for people with intellectual disabilities., Conclusion: It is recommended that families of people with intellectual disabilities focus on these positive experiences and share them with other families who may be struggling with a recent diagnosis of intellectual disability in their child., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Background: The impact of the COVID-19 on the well-being of people with intellectual disabilities (PID) has been little studied., Methods: We analyzed its impact with a cohort study quantitatively analyzing anxiety, depression, organic symptoms, quality of life, and support needs in 24 PID, aged 19-74 years (x¯ 40, σ = 13.09), living in a residential center, before, during, and after the pandemic., Results: Their mental health improved unexpectedly at the onset of the lockdown although there was an increase in organic symptoms. But, with the progress of the lockdown, their mental health deteriorated drastically. On the contrary, as expected, their quality of life and support needs worsened from the beginning of the lockdown until the country returned to normality, a time when there was a general recovery, without reaching pre-pandemic levels. These results show that the mental health of PID was affected differently to that of people without intellectual disabilities.

Background: Evidence from the UK from the early stages of the covid-19 pandemic showed that people with Intellectual Disabilities (ID) had higher rates of covid-19 mortality than people without ID. However, estimates of the magnitude of risk vary widely; different studies used different time periods; and only early stages of the pandemic have been analysed. Existing analyses of risk factors have also been limited. The objective of this study was to investigate covid-19 mortality rates, hospitalisation rates, and risk factors in people with ID in England up to the end of 2021., Methods: Retrospective cohort study of all people with a laboratory-confirmed SARS-CoV-2 infection or death involving covid-19. Datasets covering primary care, secondary care, covid-19 tests and vaccinations, prescriptions, and deaths were linked at individual level., Results: Covid-19 carries a disproportionately higher risk of death for people with ID, above their already higher risk of dying from other causes, in comparison to those without ID. Around 2,000 people with ID had a death involving covid-19 in England up to the end of 2021; approximately 1 in 180. The covid-19 standardized mortality ratio was 5.6 [95% CI 5.4, 5.9]. People with ID were also more likely to be hospitalised for covid-19 than people without ID. The main determinants of severe covid-19 outcomes (deaths and/or hospitalisations) in both populations were age, multimorbidity and vaccination status. The key factor responsible for the higher risk of severe covid-19 in the ID population was a much higher prevalence of multimorbidity in this population. AstraZeneca vaccine was slightly less effective in preventing severe covid-19 outcomes among people with ID than among people without ID., Conclusions: People with ID should be considered a priority group in future pandemics, such as shielding and vaccinations., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Staying physically active is synonymous with good health and well-being, and its benefits on the health of people with intellectual disabilities (PWIDs) have been studied. However, there is a lack of information on how it can influence their quality of life (QoL). This study aimed to analyze the relationship between QoL and physical activity in PWIDs according to gender and the characteristics of the practiced activity. A questionnaire was administered to 380 PWIDs (mean age of 28.23 ± 12.53), 54.21% of which were men. The QoL dimensions and second-order factors were studied in relation to practicing physical activity, the practice type, the context, and gender. The results indicate that people who practiced any activity showed better QoL values. Those who engaged in a nonregulated physical activity had better values in self-determination, emotional well-being, social inclusion, and personal development, while those who did sports presented higher scores in interpersonal relationships and physical well-being. In addition, it also appears that the association between physical activity and the QoL dimensions is distinct in inclusive and specific contexts. In conclusion, physical activity is related to a better QoL, although the impact of the practice type and context differs for each QoL dimension.

Institutionalized individuals with intellectual disabilities have few opportunities to participate in instrumental activities of daily living (IADLs), which probably affects higher cognitive functions, or vice versa. The objectives of this study were to evaluate the possible difference in the ability to perform IADLs and executive functioning between individuals with and without intellectual disabilities and to determine if executive functions are associated with the performance of IADLs in people with intellectual disabilities. This was a multi-center cross-sectional study, conducted between July 2019 and May 2020. Participants with intellectual disabilities were recruited from four centers for people with intellectual disabilities. Adults without these disabilities were gathered from several community centers. The sample consisted of 90 individuals with moderate intellectual disabilities and 79 individuals with no intellectual disability. Executive functions were evaluated using the Wechsler Adult Intelligence Scale-WAIS-IV, the INECO Frontal Screening test, the Semantic Verbal Fluency Test, and the Behavioural Assessment of the Dysexecutive Syndrome-BADS-Scale. The performance of the IADLs was assessed by the Lawton and Brody Scale. The results showed that the higher the function in instrumental activities, the lower the impairment of executive functions. Executive functions accounted for 81% of the total variance in the ability to perform the IADLs. In conclusion, individuals with moderate intellectual disabilities demonstrated limitations in executing the IADLs, which were partially associated with low performance in executive functions. This information could help in the development of evidence-based intervention programs and facilitate the formulation of appropriate support strategies to enhance participation in these activities.

Background: Psychiatric genomic research is a growing field of research in Africa that is looking at epigenetics of psychiatric disorders; within which a specific focus is neurodevelopmental disorders including intellectual disability (ID). Conducting this type of research is important to identify etiologies and possible interventions or areas for further research. However, genomic research generally, and psychiatric genomic research, faces many social, ethical, cultural, and legal issues; research involving people with ID is particularly challenging. All research stakeholders - researchers, research review bodies, regulators, patient groups - generally agree that involving people with ID require several considerations, including extra protection. It is also recognized that not involving people with ID in research that is relevant to them means that opportunities to learn on specific issues including lived experiences are missed. In this scoping review, we aim to describe the range of ethical and social-cultural issues concerning involvement of people with intellectual disability in genomic research from existing literature. Methods: This scoping review will be conducted based on the Joanna Briggs Institute guidance for scoping review and reported using the PRISMA-ScR guidelines. Iterative review stages will include systematic search of six databases (Embase, Ovid Global Health, PubMed, Scopus, PsycInfo and Web of Science core collection), screening, charting and synthesis of the data. Forward and backward citation screening will also be done for the articles included in the final review. We will include peer reviewed journal articles, guidance documents and reports. Screening and selection of studies based on the eligibility criteria will be done independently by three reviewers; conflicts will be resolved through discussion with a third reviewer and other experts. Results: The results will be included in the scoping review publication. Conclusions: This scoping review will identify key areas of ethical tensions and possible solutions and inform opportunities for empirical ethics studies., Competing Interests: No competing interests were disclosed., (Copyright: © 2023 Chepkirui D et al.)

Exercise in water is widely used for improving the physical capacities of people with intellectual disabilities (IDs). In this review, we examined the results of studies on the effects of water interventions on functional abilities, as well as the physiological and biochemical status of people with IDs. We considered studies in the PubMed, MEDLINE, Scopus, Google Scholar, and Research Gate databases which were published between 2010 and 31 December 2022. Based on our inclusion criteria, 15 studies were selected for review. We found incomplete recording of data on the intensity and timing of physical activity. There was also wide variation in the terminology used to describe physical abilities. The study results suggested that aquatic interventions brought about improvements in endurance and strength; however, conflicting data were found with respect to balance and body mass index, and there were few data on biomarkers related to stress and brain health. Further research with more accurate training load data and a more common fitness terminology is needed. Lastly, traditional swimming should probably be considered as an aquatic intervention.

Background: Euthanasia review committees (Regionale Toetsingscommissies Euthanasie, RTE) scrutinise all Dutch cases of euthanasia and physician-assisted suicide (EAS) to review whether six legal 'due care' criteria are met, including 'unbearable suffering without prospect of improvement'. There are significant complexities and ethical dilemmas if EAS requests are made by people with intellectual disabilities or autism spectrum disorders (ASD)., Aims: To describe the characteristics and circumstances of people with intellectual disabilities and/or ASD who were granted their EAS request; investigate the main causes of suffering that led to the EAS request; and examine physicians' response to the request., Method: The online RTE database of 927 EAS case reports (2012-2021) was searched for patients with intellectual disabilities and/or ASD ( n = 39). Inductive thematic content analysis was performed on these case reports, using the framework method., Results: Factors directly associated with intellectual disability and/or ASD were the sole cause of suffering described in 21% of cases and a major contributing factor in a further 42% of cases. Reasons for the EAS request included social isolation and loneliness (77%), lack of resilience or coping strategies (56%), lack of flexibility (rigid thinking or difficulty adapting to change) (44%) and oversensitivity to stimuli (26%). In one-third of cases, physicians noted there was 'no prospect of improvement' as ASD and intellectual disability are not treatable., Conclusions: Examination of societal support for suffering associated with lifelong disability, and debates around the acceptability of these factors as reasons for granting EAS, are of international importance.

Competing Interests: We declare no competing interests.

Introduction: The prevalence of dementia is almost five times higher in people with intellectual disabilities compared with the general population. However, evidence-based treatments for this population are lacking, as most randomised controlled trials for dementia interventions have not included people with intellectual disabilities. Cognitive stimulation therapy (CST) has a robust evidence base in the general dementia population, consistently showing benefits to cognition, quality of life and being cost-effective. We are conducting a mixed-methods feasibility trial of group CST for people with intellectual disabilities and dementia, to determine if a future definitive randomised controlled trial is feasible., Methods and Analysis: Fifty individuals with intellectual disabilities and dementia will be randomised to either the intervention arm (14 sessions of group CST plus treatment as usual) or the control arm (treatment as usual). Randomisation will occur after informed consent has been obtained and baseline assessments completed. Each arm will have 25 participants, with the intervention arm divided into five or more CST groups with three to five participants in each. The outcomes will be feasibility of recruitment, acceptability and adherence of the intervention, suitability of study outcome measures and feasibility of collecting resource use data. Quantitative and qualitative approaches, including semistructured interviews with group participants, carers and group facilitators, will be employed to assess these outcomes., Ethics and Dissemination: This study has been approved by Essex REC (Ref: 21/EE/027) and the HRA ethical approval process through the Integrated Research Application System (IRAS ID: 306 756). We plan to publish the results in peer-reviewed journals and conferences as well as provide feedback to funders, sponsors and study participants., Trial Registration Number: ISRCTN88614460., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Research looking into the day-to-day lives of people with intellectual disabilities (ID) is on the increase in Africa. However, not enough is being done to include people with ID as active contributors to this research through inclusive approaches. Inclusive research empowers people with ID as they have the agency and autonomy to speak for themselves and they are given an active voice in the research process and outcomes. This leads to services that cater for what matters to people with ID themselves as opposed to having their needs defined by other people. The common myths and misconceptions attached to ID in Africa, which increase stigma towards people affected by this type of disability can be abated by their visibility in research and evidence of their ability to express themselves. This article makes a call to researchers on the African continent to include people with ID in research as active contributors to the research and not simply as research subjects or respondents. A background is given of global developments that have occurred in inclusive research based on the literature and the author's personal experience, which African researchers can learn from while taking cognizance of the specific needs of their own contexts. This is followed by highlighting the gaps in Africa. The article ends with a discussion of possible reasons for a lack of inclusive research in Africa and suggestions and recommendations to address this gap., Competing Interests: The author declares that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article., (© 2023. The Author.)

People with an intellectual disability (ID) often exhibit more sedentary behaviour and are less physically active than the general population. While previous public health guidelines on physical activity (PA) did not specifically address the needs of people with an ID, the recent updates now include this population, with recommendations similar to those for the general population. However, it is unclear whether the information about these guidelines has reached the broader public and what factors may influence their implementation. To investigate these issues, an online survey was conducted in Austria, Germany and Switzerland, which examined the (a) PA recommendation for people with an ID, (b) awareness of current guidelines, (c) participants' own PA behaviour (IPAQ-SF) and (d) specific contact with people with an ID. Participants ( n = 585) recommended similar levels of PA for people with an ID as for the general population, but knowledge of the guidelines did not affect their recommendation. However, participants' own PA behaviour and context-specific contact (e.g., in family or at work) were associated with the recommended PA levels. Therefore, promoting the relevance of PA and fostering contact with people with an ID might be suitable ways to increase PA in people with an ID.

Virtual reality (VR) is a promising tool for training life skills in people with intellectual disabilities. However, there is a lack of evidence surrounding the implementation, suitability, and effectiveness of VR training in this population. The present study investigated the effectiveness of VR training for people with intellectual disabilities by assessing (1) their ability to complete basic tasks in VR, (2) real-world transfer and skill generalisation, and (3) the individual characteristics of participants able to benefit from VR training. Thirty-two participants with an intellectual disability of varying severity completed a waste management training intervention in VR that involved sorting 18 items into three bins. Real-world performance was measured at pre-test, post-test, and delayed time points. The number of VR training sessions varied as training ceased when participants met the learning target (≈ 90% correct). A survival analysis assessed training success probability as a function of the number of training sessions with participants split by their level of adaptive functioning (as measured on the Adaptive Behaviour Assessment System Third Edition). The learning target was met by 19 participants (59.4%) within ten sessions ( Mdn  = 8.5, IQR 4-10). Real-world performance significantly improved from pre- to post-test and pre- to delayed test. There was no significant difference from post- to delayed test. Further, there was a significant positive relationship between adaptive functioning and change in the real-world assessment from the pre-test to the post- and delayed tests. VR facilitated the learning of most participants, which led to demonstrations of real-world transfer and skill generalisation. The present study identified a relationship between adaptive functioning and success in VR training. The survival curve may assist in planning future studies and training programs., Competing Interests: Conflict of interestThe authors declare that they have no conflict of interest., (© The Author(s) 2023.)

Objective: The aim of this systematic review and meta-analysis (PROSPERO 2020 CRD42020169323) was to evaluate the efficacy of psychological therapy for people with intellectual disabilities., Method: A comprehensive literature search yielded 22,444 studies which were screened for eligibility. Studies were eligible for inclusion if a psychological therapy was delivered to people with intellectual disabilities compared to a group who did not receive the therapy. Thirty-three controlled trials were eligible for inclusion in the review, with 19 included within a DerSimonian-Laird random effects meta-analysis. Subgroup analysis was completed by clinical presentation, and by comparing randomised trials to non-randomised trials, and group-based to individually delivered psychotherapy., Results: Following the removal of outliers, psychological therapy for a range of mental health problems was associated with a small and significant effect size, g = 0.43, 95% CI [0.20, 0.67], N = 698. There was evidence of heterogeneity and bias due to studies with small sample sizes and a lack of randomisation. Non-randomised studies were associated with a large effect size, g = 0.90, 95% CI [0.47, 1.32], N = 174, while randomised studies were associated with a small effect size, g = 0.36, 95% CI [0.17, 0.55], N = 438, excluding outliers. Individually delivered psychological therapy was associated with a small and non-significant effect size, g = 0.32, 95% CI [-0.01, 0.65], N = 146, while group-based interventions were associated with a small and significant effect size, g = 0.37, 95% CI [0.05, 0.68], N = 361, again, excluding outliers. Psychological therapy for anger was associated with a moderate effect size, g = 0.60, 95% CI [0.26, 0.93], N = 324, while treatment for depression and anxiety was associated with a small and non-significant effect size, g = 0.38, 95% CI [-0.10, 0.85], N = 216, after outliers were removed., Conclusions: Studies are fraught with methodological weaknesses limiting the ability to make firm conclusions about the effectiveness of psychological therapy for people with intellectual disabilities. Improved reporting standards, appropriately powered and well-designed trials, and greater consideration of the nature and degree of adaptations to therapy are needed to minimise bias and increase the certainty of conclusions., Competing Interests: Declaration of Competing Interest The authors report no conflicts of interest., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Clear evidence of overprescribing of psychotropic medicines to manage behaviours that challenges in people with intellectual disabilities has led to national programmes within the U.K. such as NHS England's STOMP to address this. The focus of the intervention in our review was deprescribing of psychotropic medicines in children and adults with intellectual disabilities. Mental health symptomatology and quality of life were main outcomes., Methods: We reviewed the evidence using databases Medline, Embase, PsycINFO, Web of Science, CINAHL and Open Grey with an initial cut-off date of 22nd August 2020 and an update on 14th March 2022. The first reviewer (DA) extracted data using a bespoke form and appraised study quality using CASP and Murad tools. The second reviewer (CS) independently assessed a random 20% of papers., Results: Database searching identified 8675 records with 54 studies included in the final analysis. The narrative synthesis suggests that psychotropic medicines can sometimes be deprescribed. Positive and negative consequences were reported. Positive effects on behaviour, mental and physical health were associated with an interdisciplinary model., Conclusions: This is the first systematic review of the effects of deprescribing psychotropic medicines in people with intellectual disabilities which is not limited to antipsychotics. Main risks of bias were underpowered studies, poor recruitment processes, not accounting for other concurrent interventions and short follow up periods. Further research is needed to understand how to address the negative effects of deprescribing interventions., Trial Registration: The protocol was registered with PROSPERO (registration number CRD42019158079)., (© 2023. The Author(s).)

Background: Outwardly directed aggressive behaviour in people with intellectual disabilities is a significant issue that may lead to poor quality of life, social exclusion and inpatient psychiatric admissions. Cognitive and behavioural approaches have been developed to manage aggressive behaviour but the effectiveness of these interventions on reducing aggressive behaviour and other outcomes are unclear. This is the third update of this review and adds nine new studies, resulting in a total of 15 studies in this review., Objectives: To evaluate the efficacy of behavioural and cognitive-behavioural interventions on outwardly directed aggressive behaviour compared to usual care, wait-list controls or no treatment in people with intellectual disability. We also evaluated enhanced interventions compared to non-enhanced interventions., Search Methods: We used standard, extensive Cochrane search methods. The latest search date was March 2022. We revised the search terms to include positive behaviour support (PBS)., Selection Criteria: We included randomised and quasi-randomised trials of children and adults with intellectual disability of any duration, setting and any eligible comparator., Data Collection and Analysis: We used standard Cochrane methods. Our primary outcomes were change in 1. aggressive behaviour, 2. ability to control anger, and 3. adaptive functioning, and 4., Adverse Effects: Our secondary outcomes were change in 5. mental state, 6. medication, 7. care needs and 8. quality of life, and 9. frequency of service utilisation and 10. user satisfaction data. We used GRADE to assess certainty of evidence for each outcome. We expressed treatment effects as mean differences (MD) or odds ratios (OR), with 95% confidence intervals (CI). Where possible, we pooled data using a fixed-effect model., Main Results: This updated version comprises nine new studies giving 15 included studies and 921 participants. The update also adds new interventions including parent training (two studies), mindfulness-based positive behaviour support (MBPBS) (two studies), reciprocal imitation training (RIT; one study) and dialectical behavioural therapy (DBT; one study). It also adds two new studies on PBS. Most studies were based in the community (14 studies), and one was in an inpatient forensic service. Eleven studies involved adults only. The remaining studies involved children (one study), children and adolescents (one study), adolescents (one study), and adolescents and adults (one study). One study included boys with fragile X syndrome. Six studies were conducted in the UK, seven in the USA, one in Canada and one in Germany. Only five studies described sources of funding. Four studies compared anger management based on cognitive behaviour therapy to a wait-list or no treatment control group (n = 263); two studies compared PBS with treatment as usual (TAU) (n = 308); two studies compared carer training on mindfulness and PBS with PBS only (n = 128); two studies involving parent training on behavioural approaches compared to wait-list control or TAU (n = 99); one study of mindfulness to a wait-list control (n = 34); one study of adapted dialectal behavioural therapy compared to wait-list control (n = 21); one study of RIT compared to an active control (n = 20) and one study of modified relaxation compared to an active control group (n = 12). There was moderate-certainty evidence that anger management may improve severity of aggressive behaviour post-treatment (MD -3.50, 95% CI -6.21 to -0.79; P = 0.01; 1 study, 158 participants); very low-certainty evidence that it might improve self-reported ability to control anger (MD -8.38, 95% CI -14.05 to -2.71; P = 0.004, I 2 = 2%; 3 studies, 212 participants), adaptive functioning (MD -21.73, 95% CI -36.44 to -7.02; P = 0.004; 1 study, 28 participants) and psychiatric symptoms (MD -0.48, 95% CI -0.79 to -0.17; P = 0.002; 1 study, 28 participants) post-treatment; and very low-certainty evidence that it does not improve quality of life post-treatment (MD -5.60, 95% CI -18.11 to 6.91; P = 0.38; 1 study, 129 participants) or reduce service utilisation and costs at 10 months (MD 102.99 British pounds, 95% CI -117.16 to 323.14; P = 0.36; 1 study, 133 participants). There was moderate-certainty evidence that PBS may reduce aggressive behaviour post-treatment (MD -7.78, 95% CI -15.23 to -0.32; P = 0.04, I 2 = 0%; 2 studies, 275 participants) and low-certainty evidence that it probably does not reduce aggressive behaviour at 12 months (MD -5.20, 95% CI -13.27 to 2.87; P = 0.21; 1 study, 225 participants). There was low-certainty evidence that PBS does not improve mental state post-treatment (OR 1.44, 95% CI 0.83 to 2.49; P = 1.21; 1 study, 214 participants) and very low-certainty evidence that it might not reduce service utilisation at 12 months (MD -448.00 British pounds, 95% CI -1660.83 to 764.83; P = 0.47; 1 study, 225 participants). There was very low-certainty evidence that mindfulness may reduce incidents of physical aggression (MD -2.80, 95% CI -4.37 to -1.23; P < 0.001; 1 study; 34 participants) and low-certainty evidence that MBPBS may reduce incidents of aggression post-treatment (MD -10.27, 95% CI -14.86 to -5.67; P < 0.001, I 2 = 87%; 2 studies, 128 participants). Reasons for downgrading the certainty of evidence were risk of bias (particularly selection and performance bias); imprecision (results from single, often small studies, wide CIs, and CIs crossing the null effect); and inconsistency (statistical heterogeneity)., Authors' Conclusions: There is moderate-certainty evidence that cognitive-behavioural approaches such as anger management and PBS may reduce outwardly directed aggressive behaviour in the short term but there is less certainty about the evidence in the medium and long term, particularly in relation to other outcomes such as quality of life. There is some evidence to suggest that combining more than one intervention may have cumulative benefits. Most studies were small and there is a need for larger, robust randomised controlled trials, particularly for interventions where the certainty of evidence is very low. More trials are needed that focus on children and whether psychological interventions lead to reductions in the use of psychotropic medications., (Copyright © 2023 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.)

Caregivers of people with intellectual disabilities may feel overburdened in their work and experience negative psychological consequences. The purpose of this instrumental study was to determine the evidence of internal structure and reliability of the Zarit Caregiver Burden Interview scale. A total of 398 family caregivers, including women and men, participated (M = 47.33, SD = 10.44). The structure of the scale was evaluated by factor analysis and the McDonald Omega coefficient was used to estimate reliability. Sixteen models of the scale were tested, differing in number of items and factor structures. A model of 15 items and 4 dimensions (overload, competence, social relationship, and interpersonal relationship) obtained acceptable fit (χ 2 = 184.72; p < 0.001; CFI = 0.95; TLI = 0.94; RMSEA = 0.055; SRMR = 0.05) and reliability coefficients above 0.70 in their dimensions. It is concluded that the Zarit scale is valid and reliable for use in caregivers of people with intellectual disabilities.

Exploring pacing behaviour in people with intellectual disabilities (ID) in competition will help to better understand the impact of cognition and social environment in sports, providing support for the shaping of proper inclusive sports environments. The present experimental study aimed to (1) compare the pacing behaviour and performance between people with and without ID who are inexperienced in cycling and (2) investigate how these are influenced by an opponent. Participants with ( n = 8) and without ID ( n = 10) performed two randomised 4-km maximal cycling trials, alone and against an opponent. Non-parametric tests for repeated measures data ( p ≤ 0.05) revealed that people with ID cycled slower, but with higher inter-individual variation (both conditions) and paced themselves differently compared to people without ID when competing against an opponent. In contrast to the previous literature in athletes without ID, the presence of a faster opponent resulted in a decrease in the performance in the participants with ID. The negative influence of the opponent highlights the potential difficulties people with ID experience to adequately use their opponents to enhance their self-regulatory processes and optimize their pacing and performance in maximal exercise trials. Coaches who want to offer inclusive sports environments for people with ID could take these findings into consideration.

Background: Recent studies show that adults with intellectual disabilities (ID) have high incidence of major osteoporotic fracture, especially hip fracture. In those ≥ 50 years, women and men with ID have an approximately two and four times higher rate of hip fracture than women and men without ID. Increased awareness of osteoporotic fracture risk in ID may lead to wider use of antiresorptive drugs (bisphosphonates and denosumab) in this population. We aimed to compare, between people with and without ID, the incidence of 1) major side effects, namely medication related osteoporosis of the jaw (ONJ) and oesophagitis; 2) oral pathology, which can be a risk factor for ONJ., Methods: Exploratory study investigating safety of first line osteoporosis medication within the population of a previous study comparing fracture incidence in people with and without ID in the GOLD database of the Clinical Practice Research Datalink 1998-2017., Results: The percentage of people on antiresorptive drugs was identical in the ID and non ID group (1.4%). The number of individuals who developed ONJ and oesophagitis during the study was too low to allow an accurate estimate of incidence of the events and a comparison between the two groups. The incidence of any oral pathology was 119.31 vs 64.68/10000 person year in the ID vs non ID group., Conclusions: Medication related ONJ and oesophagitis are rare in people with and without ID. There is no reason based on our findings to use antiresorptives differently in people with ID as in the rest of the population. However, the potential for side effects of antiresorptives will inherently increase with wider use of these drugs. Given the higher incidence of oral pathology in people with ID, which could put them at higher risk of ONJ, precautions should be taken to prevent this complication by attention to oral health., Competing Interests: No competing interests were disclosed., (Copyright: © 2022 Frighi V et al.)

The accumulation of body fat is an important cardiometabolic risk factor; however, there is no consensus about which measure is more reliable for the assessment of cardiometabolic risk in people with intellectual disabilities. The aim of the present study was to primarily validate the submandibular skinfold as an anthropometric measurement of cardiometabolic risk in children, adolescents, and adults with intellectual disabilities, using a cross-sectional study made up of 131 people (67.2% men) with mild and moderate intellectual disability. The cardiometabolic risk indicators used were: body mass index (kg/m 2 ), neck circumference (cm), waist circumference (cm), calf circumference (cm) and waist-to-height ratio. Moderate correlations were demonstrated between the submandibular skinfold measure and the anthropometric measurements analyzed in the three age categories, showing the highest correlation (r = 0.70) between the submandibular skinfold and BMI in the adolescent group and waist-to-height ratio in adults. The implementation of the submandibular skinfold measurement is suggested as an easy, fast, and minimally invasive anthropometric measurement as part of the physical and nutritional evaluation for the assessment of cardiometabolic risk in people with intellectual disabilities.

Behaviours that challenge (BtC), such as aggression and self-injury, are manifested by many people with intellectual disabilities (ID). National and international guidelines recommend non-pharmacological psychosocial intervention before considering medication to address BtC. Support staff play a pivotal role in the prescription process. Using coproduction, we developed a training programme for support staff, called SPECTROM, to give them knowledge and empower them to question inappropriate prescriptions and ask for the discontinuation of medication if appropriate and instead look for ways to help people with ID when they are distressed without relying on medication. We have presented data from two focus groups that we conducted during the development of SPECTROM: one that included support staff, and another that had service managers and trainers. In these focus groups, we explored participants' views on the use of medication to address BtC with a particular emphasis on the causes of and alternatives to medication for BtC. Along with the participants' views, we have also presented how we have addressed these issues in the SPECTROM resources.

Progressive resistance exercise training (PRET) reduces cardiovascular risk factors (CVRF) in the general population. It is unknown if PRET also reduces these risk factors in adults with intellectual disabilities (ID). The aim is to present the protocol of an intervention study that investigates the effect of PRET on CVRF in adults with ID. We will use a repeated time series design with one study group. Adults with mild-to-moderate ID and at least two CVRF are eligible (Netherlands Trial Register, NL8382). During a 12-week baseline period, measurements take place at a 6-week interval. After this, the PRET programme starts for 24 weeks, after which all measurements will be repeated. We will use hierarchical regression models, adjusted for sport activity and medication use, to estimate the effect of PRET. After the intervention, the participants will be followed-up for 12 weeks. We will evaluate factors for successful implementation of exercise in daily life. Primary outcomes are: hypertension, obesity, hypercholesterolemia, diabetes, metabolic syndrome. Secondary outcomes are: physical fitness, sarcopenia, physical activity, activities of daily living, falls, challenging behaviour. If our results show that the PRET programme is effective, it may be a promising non-pharmacological intervention to reduce CVRF in adults with ID.