Search

This article aims to explore whether and how people with intellectual disabilities in Iceland were using information and communication technology during periods of COVID-19-related social restrictions, as well as examine barriers to their access to and use of such technology. The study uses two sets of data. Survey data were collected from disabled people (n = 412) and data from focus group interviews with people with intellectual disabilities (n = 16) were used to expand and elaborate on the survey results. Contrary to previous research findings, socioeconomic status was not a significant barrier to digital access for the participants. However, the study’s results shed light on several intersecting socio-cultural hindrances that contributed to the digital exclusion of participants. The study is a contribution to a critical discussion on technological advancements, digital access, and uses that highlight the barriers derived from ableism.

The extent to which people with intellectual disabilities (ID) are voting is an under-researched area. In order to fill this gap, we conducted a systematic literature review with a focus on voter turnout and democratic inclusiveness among people with ID. In total, we found N = 9 studies that met our inclusion criteria, all of which were based on samples from Western countries such as Croatia, Ireland, Netherlands, Sweden, Switzerland, UK and US. Our findings suggest that people with ID have substantially lower voter turnout than ordinary voters. Constraining factors for voting and other instances of democratic inclusion include educational limitations and physical obstacles at ballot places, as well as being under full guardianship. On the other hand, living in a household with a voter constitutes a facilitating factor. Because of the limited number of studies, we suggest that more basic quantitative and qualitative research in many countries ought to be conducted.

Abstract 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.

Abstract 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.

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.

BackgroundPeople 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. ObjectiveWe 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. MethodsFor this reason, we conducted a multiple-methods study applying the nonadoption, abandonment, scale-up, spread, and sustainability framework. ResultsAs 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. ConclusionsThe disability services investigated were still in need of standardized procedures to promote the digital participation of their residents.

BackgroundAcceptance 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). ObjectiveThis 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. MethodsA 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. ResultsA 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

Abstract 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.

This study examines the legal vulnerability of people with intellectual disabilities exposed to domestic violence and sexual abuse, and has the research question: How is the legal vulnerability of people with intellectual disabilities represented in stories of abuse and violence told by the police? The study is based on interviews with 11 police officers who coordinate such cases. The term legal vulnerability and Goffman’s theoretical perspectives of the interaction order is used to provide an understanding of factors which may challenge the competence in safeguarding their legal rights. The analysis generated five themes. Our findings suggest that their lack of competence or experience in social interaction with others makes them vulnerable to exploitation. Legal vulnerability also occurs in the interaction with the police, due to a mismatch in police officers’ expectations of an investigative interview and their challenges to account for what they have been subjected to.

Abstract 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

Abstract 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.

El tratamiento de la familia sobre la educación sexual de sus hijos e hijas con discapacidad intelectual requiere una especial atención, ya que esta cuestión sigue considerándose un tema tabú, y es que la población juvenil con discapacidad intelectual precisa una orientación acerca de sus propias experiencias sexuales, así como la formación de los y las profesionales para la transmisión de información y valores sobre sexualidad, en estrecha colaboración con la actuación de la familia. En este estudio se pretende, por un lado, indagar sobre materiales y programas que se hayan desarrollado en los últimos años; y, por otro, analizar cómo tratan la educación afectivo-sexual en las personas con discapacidad dirigida a las familias y los y las profesionales. Por ende, se ha realizado una revisión sistematizada para obtener materiales y programas de educación afectivo-sexual dirigidos a personas con discapacidad. Los resultados obtenidos revelan la necesidad de guiar a ambos agentes en el aprendizaje de la educación sexual, siendo para ello imprescindible disponer de materiales didácticos que promuevan el modo de actuar desde el ámbito biológico, personal, profesional y social.

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.

ABSTRACT 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.

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

The issue of affective and sexual relationships in intellectual disability (ID) has been hidden and even denied for a very long time. The research focuses on the point of view of professionals working in the field of ID. Through a qualitative-quantitative research design, the aim was, on the one hand, to understand whether sexuality and affectivity are topics that are addressed within the various structures through projects or courses, and, on the other hand, to give space to the representations, practices, and experiences of the professionals themselves. Data show an acknowledgement of the importance that people with ID can have sexual and affective experiences, but, at the same time, a gap in daily practices, which is attributed to three reasons: the lack of training; the idea that there are needs that are more important to work on; the difficulty of sharing ideas about this topic in the team.

Abstract 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

The internet has become very central to today’s society. The aim of this scoping review was to map internet use among people with an intellectual disability (ID) in Sweden, and to scrutinise the phenomenon from a critical perspective. The concepts of digital divide, digital inequality, social construction of intellectual disability, and power relations were applied to conceptualise the empirical material. The results showed that people with ID have limited access to the internet. A discrepancy in approaches towards internet use was identified. Generally, people with ID subscribe to a positive view of the internet. Among professionals a generally pessimistic view was instead identified. People with ID are described as a vulnerable and naive group, who presumably cannot protect themselves from the risks the internet entails. From a critical perspective, control of internet access could strengthen asymmetric power, and human rights of social participation are withheld from people with ID.

Abstract 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.

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: 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.

Abstract 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.

Introduction. Contemporary social policies aimed at individuals with disabilities are grounded in the social model of disability. As a result, the primary objective of social policy towards individuals with disabilities globally, within the EU, and also in Croatia, is the pursuit of social inclusion following the initiation of deinstitutionalization. Objectives. This research aimed to examine the social inclusion of adults with intellectual disabilities in Croatia. The primary objective involved identifying dimensions or factors within the social inclusion Questionnaire. Additionally, the study sought to explore potential correlations between the age and gender of adults with intellectual disabilities and their level of social inclusion. Method. The study comprised 145 adults with intellectual disabilities, residing with their families in various cities across the Republic of Croatia. A questionnaire specifically tailored to measure the social inclusion of people with intellectual disabilities was developed. Results. The final version of the Questionnaire singled out 4 factors within the construct of social inclusion: Social environment and physical health; Inclusion and human rights; Mental health and relationships with family and friends; and Economic well-being. The findings revealed that there were no statistically significant associations between the social inclusion of individuals with intellectual disabilities and either their age or gender. Conclusion. It is important to develop better measurement instruments for social inclusion and to conduct research on a larger sample of individuals not involved in non-governmental programs. The impact of age and gender should also be examined qualitatively to identify specific characteristics. Additionally, according to the descriptive data, there is a need for improved educational programs and employment opportunities for people with intellectual disabilities.

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.

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.

Introduction: Social perception of disability is often a more serious problem than the disability itself. Acceptance of people with disabilities by the social environment is crucial, as it promotes their all-round development better than measures taken in individual rehabilitation. The aim of the study was to analyze the perception of people with intellectual disabilities by residents of the Tarnów region. Material and methods: The study was conducted by a diagnostic survey method using the author's survey questionnaire in March-May 2023. 314 correctly completed questionnaires were included in the study, completed by people between 18 and 67 years of age (mean 25.97 ± 7.97 years). A significance level of p < 0.05 was adopted. Results: As many as 32.48% (n = 102) of the respondents admit that they have a person with intellectual disabilities in their family or neighborhood. Among the respondents, 54.14% are familiar with local organizations for people with intellectual disabilities and their families, where 17.20% of people admitted that they have done volunteer work for such an organization. A willingness to become a volunteer for such an organization was expressed by 44.90% of people. Respondents overwhelmingly agreed that people with intellectual disabilities should participate in the life of the local community (91.40%). The majority of respondents (79.62%) believe that intellectually disabled people have the same sexual needs as the rest of society, followed by 15.61% who say they have no sexual needs, and 2.87% associate the sexual needs of intellectually disabled people with their degree and type of disability. Conclusions: Society shows signs of effortless tolerance – it does not want to have closer relations with people with intellectual disabilities, but at the same time does not mind that such people participate in society. Respondents show insufficient knowledge of the sexuality of people with intellectual disabilities.

Abstract 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.

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.

BackgroundPrevious 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 impactMethods37 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.ResultsA 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.ConclusionsThe 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.

BackgroundResponsible 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. ObjectiveWe 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. MethodsThree 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. ResultsOverall, 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. ConclusionsThis 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.

Abstract 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.

Background: Participation is often defined as taking part and being included in different areas of life. Leisure represents an important area of life for all people. People with disabilities have the right to experience leisure time in a self-determined manner. They have the right to participate in leisure activities on an equal basis with others. Due to various influencing factors, people with intellectual disabilities, especially those with severe to profound intellectual disabilities, are at risk of decreased participation. This is alarming because participation in leisure activities reflects quality of life. Purpose: The present study aims to review the empirical findings on leisure participation and its influencing factors in people with mild to moderate disabilities as compared to people with severe to profound intellectual disabilities. Method: A scoping review following the PRISMA-ScR checklist by Cochrane and the Joanna Briggs Institute (JBI) was conducted to examine research studies published in peer-reviewed journals between 2000 and 2022. The studies that were included relate to activities within the everyday leisure time of people with intellectual disabilities, regardless of age, gender, or severity of their cognitive disability. The categories of vacation and tourism were excluded so as to focus on everyday leisure. The sample was screened by two reviewers independently. In total, 27 articles met the inclusion criteria, with 21 articles referring to people with a mild to moderate intellectual disability and only six articles referring to people with a severe to profound intellectual disability. The evidence was summarized with a predefined standardized charting form, which was used by the two reviewers. Results: The results show that participation in leisure activities by people with intellectual disabilities can be limited, especially for those with severe to profound intellectual disabilities. This contradicts the guiding principle and human rights of inclusion and self-determination. Their participation in leisure time is extremely dependent on external factors, such as support people, leisure time availability, and form of living. Passive activities at home are often provided for people with severe to profound intellectual disabilities in particular; therefore, the need for interactive and self-determined leisure opportunities in the community is enormous. Various factors influencing leisure participation can be identified. Implications: The findings of this scoping review can be used to consider intervention, support, and barriers to enhancing leisure participation among people with disabilities as an important area of life.

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.

Support organised through a personal budget aims to promote people’s choices in how they arrange their support. Participation in choices of people who use little or no verbal speech to express themselves requires that support workers use personalised communication. This article explores how support workers use personalised communication to prioritise the choices of people with intellectual disabilities about organising support through a personal budget. It applies Gormley and Fager’s framework of dimensions for personalising communication to analyse ethnographic data from four people with intellectual disabilities using personal budgets and their support workers. The analysis found that workers promoted people’s participation in choices about their support when they focused on how people preferred to express themselves. Support practice, policy and research that target people’s communication preferences in making support arrangements can have direct impact on their satisfaction with the arrangements and the quality of their personalised support.

Abstract 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)

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 (χ2 = 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.

Our study examines how staff in housing and day activity centres describe the transition of people with intellectual disabilities (ID) to old-age retirement. The data comprise the staff’s written responses to open-ended questions included in an online questionnaire. The data were analysed using content analysis, followed by further analysis using the concept of the script. We identified two main scripts in which the staff outline the transition process. According to the person-centred script, the role of the person with ID in transition is an agent with initiative and the staff are seen as enablers and supporters. In the system-driven script, the role of the person with ID is a passive object adapting to changes, while the staff seems to implement routines. This study shows inequality among aging people with ID. Their opportunities to make decisions from retirement depends on which script is followed in their municipality’s disability services and service-provider organisation.

IntroductionPeople 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.AimThis 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.MethodsA literature search was performed in May 2023. Article selection was based on inclusion and exclusion criteria and quality appraisal.ResultsAfter 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).DiscussionThe 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 implicationsThe 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.

Abstract Background Previous research shows that people with intellectual disabilities have less knowledge about sexual health and are more vulnerable to victimisation. In cases of sexual abuse, they are likely to encounter the criminal justice system as vulnerable witnesses. Several challenges arise when people with intellectual disabilities are in communication with the criminal justice system. We aimed to explore the perceptions, experiences and knowledge of people with intellectual disabilities regarding personal and sexual boundaries in order to identify factors relevant for preventing sexual abuse, to develop future studies. Method The study had a qualitative design. Data were collected from seven people with mild intellectual disabilities (25–40 years; 2 men, five women) through one-to-one interviews in specialised health care services for people with intellectual disabilities (SHCS). The participants lived alone, in group homes and with their families. Many received professional support services. Data were analysed using thematic analysis. Results The interviews identified that the participants want to be in romantic relationships and that some, consider sex to be unimportant. Many of them have had trouble finding someone to have a romantic relationship with. The participants were unsure about sexual consent related to sexual activity, though many could explain the concept of consent in other contexts. Many participants reported that they had experienced sexual abuse, including online sexual abuse. Those participants who had reported the sexual abuse had positive experiences obtaining assistance from the criminal justice system. The participants who had experienced sexual abuse reported trauma and fear related to their experiences. Conclusion This study highlights the need for information about sexually abusive relationships, risks online and ways to get help. More attention should be given to the impact of trauma, police and mental health treatment following sexual abuse against people with intellectual disabilities.

Jana York,1 Yvonne Wechuli,2 Ute Karbach3 1Faculty of Rehabilitation Sciences, TU Dortmund University, Dortmund, Germany; 2Faculty of Human Sciences, University of Kassel, Kassel, Germany; 3Institute of Medical Sociology, Health Services Research and Rehabilitation Science, University of Cologne, Cologne, GermanyCorrespondence: Jana York, Faculty of rehabilitation sciences, TU Dortmund University, Emil-Figge-Str. 50, Dortmund, 44227, Germany, Tel + 49 (0)231 755 4651, Fax +49 (0)231 755-5893, Email jana.york@tu-dortmund.dePurpose: The paper intends to do a scoping review of people with intellectual disabilities in emergency care where this group seems to face access barriers and discrimination. It analyses the conceptual and methodological framework for studies examining the former.Methods: A scoping review is conducted. The studies’ quality is assessed via a checklist developed by the authors drawing on a compilation of common assessment tools for study quality.Results: Fourteen quantitative studies fulfil the inclusion criteria for further analysis. Summary measures are extracted. Results are synthesized with Andersen’s Behavioral Model of Health Service Use. Studies employ a combination of variables attributable to different aspects of population characteristics and health behavior.Conclusion: Most studies seek to quantify or predict emergency care overuse by people with intellectual disabilities. Future studies should also take patients’ poor health or treatment outcomes and their perspectives into account.Keywords: emergency care, hospital, barriers to health care, health care system, health inequality

The ongoing coronavirus disease 2019 (COVID-19) pandemic has affected the global population, especially the vulnerable groups such as children, the elderly, indigenous people, and people with disabilities. Restriction and limited access to education, health, and public services due to measures taken to cope with the pandemic have made life even more difficult for people with disabilities, particularly those with intellectual ones. People with intellectual disabilities were not counted as a high-risk population, thus being excluded in most public health measurements that are done to encounter the pandemic. Several investigations have been conducted to explore the impacts of the COVID-19 pandemic on children, women, and the elderly, yet very few discussed how pandemics affected people with intellectual disabilities. This article is a review of existing literature using Medical Subject Headings (MeSH) keywords like “COVID-19” and “intellectual disabilities” which was conducted in Pubmed, Web of Science, Mendeley, Google Scholar and ResearchGate to find related studies. Here we reviewed studies on the impacts of the COVID-19 pandemic on people with intellectual disabilities, including access to education, healthcare, public services, and other related concerns. We also discussed the inclusivity of COVID-19 prevention and control measures taken so far and how it should be designed to accommodate people with intellectual disabilities. This review is expected to provide an insight for the stakeholders and policymakers to employ better and more inclusive approach in the management of pandemic to ensure the wellbeing and rights of people with disabilities in general and people with intellectual ones in particular.

In research on Easy Language and automatic text simplification, it is imperative to evaluate the comprehensibility of texts by presenting them to target users and assessing their level of comprehension. Target readers often include people with intellectual or other disabilities, which renders conducting experiments more challenging and time-consuming. In this paper, we introduce Okra, an openly available touchscreen-based application to facilitate the inclusion of people with disabilities in studies of text comprehensibility. It implements several tasks related to reading comprehension and cognition and its user interface is optimized toward the needs of people with intellectual disabilities (IDs). We used Okra in a study with 16 participants with IDs and tested for effects of modality, comparing reading comprehension results when texts are read on paper and on an iPad. We found no evidence of such an effect on multiple-choice comprehension questions and perceived difficulty ratings, but reading time was significantly longer on paper. We also tested the feasibility of assessing cognitive skill levels of participants in Okra, and discuss problems and possible improvements. We will continue development of the application and use it for evaluating automatic text simplification systems in the future.

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.

Abstract Introduction Experience‐based codesign (EBCD) is a valuable tool for participatory quality improvement. However, the EBCD process needs to be adjusted to make it suitable for long‐term care. The focus of the improvement process needs to shift to the care relationship, as this is an important part of the quality of care in these settings. Furthermore, the EBCD process needs to be made more accessible to vulnerable populations. Methods Through a participatory research approach, EBCD was adjusted to long‐term care. The research was conducted in two care organisations: one supporting people with serious mental illness and intellectual disabilities in independent living and one providing homecare services for older persons. Results The participatory research resulted in the development of ‘Ask us!’—a method for critical reflective codesign. The research furthermore provided valuable lessons for participatory projects with vulnerable clients. A common problem with participatory research in long‐term care is ensuring the involvement of clients and informal carers. We report on various strategies developed to include experiences of a diverse set of services users, such as combining interviews with participant observation, photo‐voice and involving experts‐by‐experiences as co‐ethnographers. In close collaboration with an inclusive theatre company, these experiences were translated into 42 short videos on complex situations in the care relationship from the perspective of clients, professionals or informal carers. These videos instigate critical reflection and accelerate the participatory quality improvement process. Moreover, practical tools were developed to overcome barriers regarding the involvement of people with disabilities. These include the use of photo‐elicitation to enable participation of clients with disabilities in heterogeneous group discussions and involving experts‐by‐experience as proxies to share experiences of clients for whom participation in the ‘Ask us’ method remains inaccessible. Conclusion The result of a robust participatory process, ‘Ask us!’ is a promising method for participatory quality improvement in long‐term care. The research furthermore generated lessons for involving vulnerable populations in participatory research and codesign. Patient or Public Contribution Clients were involved as informants, sharing their experiences with the care relationship in interviews, photovoice and observations. They were also involved as consultants, helping to analyse input for the film scripts during data validation sessions.

This article discusses the findings of a study into how voluntary work provides opportunities for work inclusion and citizenship for people with intellectual disabilities. The study is based on qualitative interviews with 12 people with intellectual disabilities engaged in voluntary work in Iceland and Norway. Based on collective qualitative analysis, opportunities for meaningful social relations, competence, contribution and belonging were identified as key aspects of the participants’ experiences of volunteering. The study indicates that voluntary settings offer work that recognises the diversity of preferences, expectations and skills among people with intellectual disabilities. The study’s findings point to the importance of rethinking the meaning and boundaries of work, as participation in voluntary work provides opportunities for both inclusion and citizenship in addition to the participants’ participation in other work settings.

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.

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.

The paper is intended to show a system of institutional care for people with intellectual disabilities, which is characterized by a kind of ambivalence. The whole disquisition is based on two fundamental and dichotomous categories: control and subordination versus autonomy and independence. Each of these categories is connected with one of two perspectives within which a residential care facility can be captured. The first one arises from Goffman’s vision of a total institution, where a unit is presented as an objectified subject of other people’s actions, revealing a situation of isolation and personal dependence. The second perspective presents a model of relationships between the personnel and their charges; it is characterized by an individualistic approach toward the needs of people with disabilities regarding their right to autonomy and self-determination. The confrontation between these two perspectives and areas of issues is discussed in this paper.