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Background: Emotional distress has received less attention as an explanatory factor for self-injury in people with intellectual disabilities, with research and practice primarily focusing on biobehavioural factors. This systematic review examines the self-reported explanations for self-injury by people with mild or moderate intellectual disabilities, and discusses how the findings contrast with those from self-reported studies of people within the general population who self-harm. Methods: Five databases (PsychINFO, IBSS, CINAHL, Web of Science and Medline) were systematically searched to find qualitative, empirical research since 2000 about self-reported reasons for self-injury. Results: Four studies were found which conducted research with people with intellectual disabilities. Three primary themes are discussed: relief from overwhelming emotions; trauma and loss; and difficulty in articulating emotions. Conclusion: This review found a paucity of research asking people with intellectual disabilities about their own self-injury. However, the research available suggests that explanatory factors for self-injury typically reported in the general population should be considered for those with mild or moderate intellectual disabilities.

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

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

Background: People with intellectual disabilities (ID) experience many health and social inequalities. Increasing physical activity is a proven intervention to address such inequalities, yet the physical activity rates of this population are substantially lower than the general population. Aim: Research has been growing to understand why this is and how to intervene to increase the physical activity levels of people with ID. Method: Using a behavioural epidemiological framework, the research in this area from barriers and facilitators of physical activity to translational research testing interventions within natural settings is reviewed. Findings from a total of 14 reviews and eight empirical studies and protocols were included. Results: Whilst there are multiple investigations into what promotes or enhances physical activity for people with ID, findings from intervention studies show few successful outcomes. Gaps within the existing research are identified and recommendations about how intervention efficacy might be improved are provided to inform future research and practice. Conclusion: Findings from previous research on barriers and facilitators can be further capitalised on and intervention studies should be underpinned by better links to theory and more systemic approaches.

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.

The COVID-19 pandemic has had significant consequences for all areas of human life. This particularly applies to people with intellectual disability (ID) whose functioning and living environment are associated with many specific risk factors. The review is to determine what difficulties and changes in the psychosocial functioning of people with ID have been brought about by the COVID-19 pandemic and what factors may be important in dealing with them. Twenty studies focused on the experiences of people with ID during the COVID-19 pandemic were analyzed. All of these were qualitative (n = 16) and mixed-method studies (n = 4). The COVID-19 pandemic has caused significant changes in the lives of people with ID, mainly in the organization of support and services. This has had important consequences for their psychosocial functioning. There has been a decrease in competencies and social integration, and an increase in difficult behaviors and mental problems. The challenges related to the COVID-19 pandemic have also resulted in positive changes: people with ID have developed technology skills and personality traits such as responsibility for themselves and others. People with ID have mastered safety habits to a varying degree. It is important to support them in the time of the COVID-19 pandemic, maintaining a balance between protecting them from risk and ensuring their autonomy.

People with intellectual disability (ID) generally tend to have difficulties expressing their thoughts and feelings verbally. Art-based therapies rely less on cognitive ability and verbal skills and aim to promote mental health. Drama therapy provides a playful framework to communicate problematic issues and to foster social skills. Improvisational theatre (improv) methods applied in therapy settings were reported to show positive effects on social competences and self-esteem. This pilot study investigates the feasibility (N = 24) and appropriateness (n = 12) of an intervention using improv methods in people with mild to moderate ID. Feasibility was measured on the basis of the average participation period, while appropriateness was assessed through a standardised patient satisfaction questionnaire (CSQ-8) and a self-developed questionnaire. The frequency of the applied methods was compared in two subgroups with participants requiring different support. The average participation rate of 19 months indicated a good feasibility. High CSQ-8 scores (M = 27.6/max. 32) and positive feedback on the self-developed questionnaire indicated the overall appropriateness. The frequency analysis of the applied methods reflected the adaptive nature of the intervention. Further research on the efficacy of improv methods contributing to mental health in people with ID is recommended.

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.

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.

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

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. [ABSTRACT FROM AUTHOR]

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.

Background: Although the current preventive measures relating to COVID-19 can lead to challenges in the daily work of direct support workers (e.g. keeping 1.5 m distance), it remains vital to uphold the principles of person-centred care when working with older people with intellectual disabilities. The current study explores the extent to which direct support workers have been able to apply a specific form of person-centred care (i.e. integrated emotion-oriented care, or IEOC) when working with older people with intellectual disabilities during the COVID-19 pandemic. Method: Six direct support workers from five facilities serving older people with intellectual disabilities in the Netherlands participated in this qualitative study. They participated in a two-hour focus group, which was transcribed verbatim, and the transcript was analysed thematically. Results: Three themes emerged: (i) the negative impact of changes due to the COVID-19 measures on service users; (ii) the adaptation of direct support workers to changes due to the COVID-19 measures; and (iii) putting the needs and wishes of service users first. Conclusion: This study provides first impressions into the experiences of direct support workers providing person-centred care to older people with intellectual disabilities during the COVID-19 pandemic.

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. [ABSTRACT FROM AUTHOR]

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.

Background: The importance of understanding the needs of older people with intellectual disabilities (IDs) is obvious, but the research available is limited. This study identifies the self-reported needs of older adults with IDs and compares them with staff reported needs regarding the same older adults with ID, therefore specifying and explaining agreements and disagreements. Method: The needs of 96 older adults with IDs were assessed through the Inventory of Identification of Needs (informant and self-report versions). Results: Both older people with IDs and staff reported quite diverse needs related to all the domains assessed by the IIN: physical health, literacy, information, meaningful activity, participation in the community, mental health, basics needs and accommodation. All the mean scores of the informant version of the IIN were higher than the ones of the self-report version. Agreement amongst informants was influenced by the prominence of needs, the accessibility to and the subjectivity of the information, and social desirability. Conclusions: A consumer-driven approach implies that services should be based on the needs identified.

Background: There is a need for promoting exercise practice among people with intellectual disabilities (ID). Aquatic exercise (AE) could be a viable option in this regard.Objective: To identify and critically analyze the best available evidence concerning the effects of AE in the physical and mental health of people with ID. Methods: A systematic review of randomized controlled trials (RCTs) and comparative studies was performed after searching within several databases up to March 2021. Results: A total of 4 RCTs and 3 comparative studies were found. Their methodological quality ranged from high to low. Aquatic interventions had positive effects on cardiorespiratory, muscular fitness and balance. Mixed effects were seen on parameters related to obesity and cognition. Scant information regarding feasibility and intervention fidelity was provided. In general, interventions details were not discussed in deep. Conclusion: Preliminary evidence shows that aquatic exercise can be prescribed to people with ID in order to improve their physical health. The impact of aquatic exercise on motor skills, cognitive function and mental health remains unclear. Further research on this topic should provide a detailed description of the interventions carried out, including information on the feasibility and intervention fidelity.

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.

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. [ABSTRACT FROM AUTHOR]

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

This study aimed to identify whether an intervention with capoeira changes the psychomotor profile of people with Intellectual Disabilities (ID). This condition (ID) is characterized by global developmental delay, notably neurological and psychomotor aspects. For this study, 20 students from a specialized educational service diagnosed with ID were divided into two groups (control [CON] and intervention [INT]). After the interventions, the CON group indicated progress in the tonicity and balance factors, while in the INT group, the balance factors, body awareness, spatio-temporal structure, global praxis, fine praxis and total test score improved. We conclude that a capoeira intervention program for people with ID improves the psychomotor profile of participants. Keywords: Person with disabilities, psychomotor development, psychomotor evaluation, motor skills, executive functions, Intellectual disability (ID) is characterized by significant limitations in both intellectual functioning and adaptive behavior, expressed in conceptual, social, and practical skills (Schalock et al., 2021). The ID occurs during [...]

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.

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 FROM AUTHOR]

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.