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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of the academic literature, (ii) a desk‐based search of the grey literature and (iii) an online survey to capture unpublished resources that were distributed to services, professionals, third‐sector organisations and family members.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 FROM AUTHOR]

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

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

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

Background: Concerns have been raised about the accessibility and quality of cancer‐related care for people with intellectual disabilities (ID). However, there is limited insight into cancer incidence and the utilization of cancer care at the ID population level to inform targeted cancer control strategies. Therefore, we aimed to examine differences in the utilization of cancer‐related care between people with and without ID, identified through diagnostic codes on health insurance claims. Methods: In a population‐based cohort study, Dutch individuals of all ages who received residential care through the Chronic Care Act due to an ID (n = 65 183) and an age and sex‐matched sample of persons without ID (1:2 ratio), who were cancer‐free at enrollment in 2013 were followed through 2015. Incidence rates (IRs) of newly started cancer care and IR ratios (IRRs) with 95% CIs were used to compare groups. Separate analyses were performed per cancer type. Results: Individuals with ID received less cancer‐related care than individuals without (IRR = 0.64, 95% CI 0.62‐0.66). Differences increased with age and were larger for females than for males. Utilization of care for cancers within the national screening program (female breast, cervical, and colon cancer) was lower for people with ID compared to people without ID. Conclusion: Cancer may be underdiagnosed and/or undertreated in people with ID, or cancer is truly less prevalent in this population. In particular, the differences detected between males and females with ID, and the potential underutilization of national screening programs, require urgent follow‐up investigations. [ABSTRACT FROM AUTHOR]

Purpose: Intellectual disability is one of the neurodevelopmental disorders. Studies indicated that depression and anxiety are the most prevalent emotional problems among the people with intellectual disability. The aim of this study was to investigate the utility of behavioral activation therapy in addressing emotional problems of two depressed students with borderline intellectual disability. Method: This study is a single‐subject design with multiple baseline and one month follow‐up. Two students with borderline intelligence underwent behavioral activation therapy for 12 sessions. Beck Depression Inventory‐Second Edition, Beck Anxiety Inventory, Oxford Happiness Inventory and Rosenberg Self‐Esteem Scale were used. Data were analyzed using visual inspection of graphed data, changes in trends, improvement percentage and effect size. Findings: The findings of this study support the utility of behavioral activation therapy in addressing the emotional problems of two depressed students with borderline intellectual disability. Conclusion: Behavioral activation therapy has had favorable outcomes in reducing depression and anxiety in depressed students with borderline intellectual disabilities. [ABSTRACT FROM AUTHOR]

The transition to digital payments is an ongoing trend, yet cash remains important for a substantial and diverse group of individuals. This emerges from a study using rich payment diary data of Dutch consumers. A total of 7% of the respondents report always using cash at points of sale and 28% indicate they cannot do without cash. Cash is especially important for people with low digital literacy, people who are blind or visually impaired, people with limited or no hand function, people with a mild intellectual disability and people who find it difficult to make ends meet on their income. Even though many parties involved in the payment industry are developing their payment solutions to enhance accessibility for a broader audience, there will continue to be people for whom the use of digital payments poses significant challenges. It is therefore essential that cash remains accessible and available. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities (ID) face barriers in cancer care contributing to poorer oncological outcomes. Yet, understanding cancer risks in the ID population remains incomplete. Aim: To provide an overview of cancer incidence and cancer risk assessments in the entire ID population as well as within ID‐related disorders. Methods: This systematic review examined cancer risk in the entire ID population and ID‐related disorders. We systematically searched PubMed (MEDLINE) and EMBASE for literature from January 1, 2000 to July 15, 2022 using a search strategy combining terms related to cancer, incidence, and ID. Results: We found 55 articles assessing cancer risks in the ID population at large groups or in subgroups with ID‐related syndromes, indicating that overall cancer risk in the ID population is lower or comparable with that of the general population, while specific disorders (e.g., Down's syndrome) and certain genetic mutations may elevate the risk for particular cancers. Discussion: The heterogeneity within the ID population challenges precise cancer risk assessment at the population level. Nonetheless, within certain subgroups, such as individuals with specific ID‐related disorders or certain genetic mutations, a more distinct pattern of varying cancer risks compared to the general population becomes apparent. Conclusion: More awareness, and personalized approach in cancer screening within the ID population is necessary. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities (PwID) have a bidirectional relationship with epilepsy. Nearly 25% of PwID have seizures and 30% people with epilepsy are thought to have a significant intellectual impairment. Furthermore, 70% of PwID are thought to have treatment‐resistant epilepsy. In the United Kingdom, antiseizure medications (ASMs) are the second most widely prescribed psychotropic agent for PwID. However, it is unclear what the current evidence and patterns is on current prescribing of ASMs, including when and how a case is made to withdraw them. A narrative review along with an analysis of large‐scale NHS Digital published data (2015–2020) on several aspects of ASM prescribing by general practices for PwID was undertaken. The review results and data analysis are consolidated and presented as 11 themes to provide a comprehensive overview of the study topic. Recent studies estimate that one‐third and one‐fifth of PwID are prescribed ASMs. A history of epilepsy is seen as the primary prescribing reason; however, often it is a legacy, and the indication is no longer clear. The proportion receiving ASMs continues to rise with age. This pattern of use does not correlate well with seizure onset. There are limited data on de‐prescribing ASMs in PwID. The study population heterogenicity, associated polypharmacy, multimorbidity and higher sudden unexpected death in epilepsy risks are outlined. Suggestions are made from available evidence for improving prescribing practices for PwID and seizures, and key areas for further research in this complex clinical area are outlined. [ABSTRACT FROM AUTHOR]

Background The proliferation of 'accessible information' for people with intellectual disabilities in UK health care has accelerated in recent years, underpinned by policy guidance alongside the recent introduction of mandatory standards. However, questions have been raised as to the impact of such resources as a means of enhancing involvement in health care and addressing health inequalities. Objective To review and synthesize the evidence from different approaches used to evaluate the impact of accessible information for people with intellectual disabilities using a meta-narrative approach. Search strategy Literature searches were iterative and incorporated formal databases, grey literature and hand searches alongside more intuitive and opportunistic methods. Inclusion criteria Included English language papers published before December 2015 described the design and evaluation of written information adapted for adults with intellectual disabilities. Data extraction and synthesis We organized the papers into five groups according to similarity in authors' writing styles and presentation, epistemology and theoretical foundations, aims and methodologies, professional and organizational identities. Main results The 42 included papers in the five groupings occupied diverse positions on (i) public communication vs individualized materials, (ii) literacy as decontextualized skills vs social practices and (iii) the expertise of patients vs professionals. There was limited evidence for the impact of accessible health information, notwithstanding the potential benefits associated with their creation. Conclusions Individually tailored information is more likely to meet personalized health information needs for people with intellectual disabilities. The emergence of different social formations in the creation of accessible information has potential for advancing engagement of diverse groups. [ABSTRACT FROM AUTHOR]

Intellectually disabled individuals are more prone to parasitic infections due to their unusual behaviors, immune and nutrient deficiencies, and living conditions. The current study is aimed at evaluating the prevalence of intestinal parasites in institutionalized intellectually disabled individuals in Bandar Abbas County in the south of Iran. Subjects of the study were 119 individuals, living in an intellectually disabled individual care center. Demographic features of the subjects including age, sex, intellectual disability type, and duration of their stay in the center were recorded. A stool sample was taken from each subject and evaluated by direct wet mount and formalin-ethyl-acetate concentration methods. Samples were also examined, using trichrome and modified acid-fast permanent staining. The mean age of the subjects was 27.6 (±2.24), ranging from 4 to 60 years old. Of the 119 participants, 55 (46.2%) were male, and 64 cases (53.8%) were female. Overall, 31 individuals (26.1%, 95% CI: 18.4-34.9) were found to be infected with at least one type of intestinal parasite. Blastocystis hominis, as the most common detected parasite, was detected in 13 (10.1%), Entamoeba coli in 12 (10.1%), Giardia lamblia in 5 (4.2%), Cryptosporidium in 2 (1.7%), Iodamoeba butchlii in 2 (1.7%), and Endolimax nana in 1 (0.8%) of participants. Three cases had coinfection with Blastocystis hominis and Entamoeba coli, one case was infected with Blastocystis hominis and Giardia lamblia, and one case was coinfected with Giardia lamblia and Entamoeba coli. There were no statistically significant associations between intestinal parasitic infection and gender, age, type of intellectual disability, or duration of stay in the care center (P > 0.05). The findings of the present study indicate a relatively high prevalence of parasitic infections in people with intellectual disabilities in Bandar Abbas, southern Iran. Noteworthy is the high prevalence of Blastocyst and also the presence of Cryptosporidium infection in these people. Periodic treatment of these people and improvement of their maintenance conditions can be considered for the prevention and control of intestinal parasitic infection in these people. [ABSTRACT FROM AUTHOR]

Background: Mental health policies outline the need for codesign of services and quality improvement in partnership with service users and staff (and sometimes carers), and yet, evidence of systematic implementation and the impacts on healthcare outcomes is limited. Objective: The aim of this study was to test whether an adapted mental health experience codesign intervention to improve recovery‐orientation of services led to greater psychosocial recovery outcomes for service users. Design: A stepped wedge cluster randomized‐controlled trial was conducted. Setting and Participants: Four Mental Health Community Support Services providers, 287 people living with severe mental illnesses, 61 carers and 120 staff were recruited across Victoria, Australia. Main Outcome Measures: The 24‐item Revised Recovery Assessment Scale (RAS‐R) measured individual psychosocial recovery. Results: A total of 841 observations were completed with 287 service users. The intention‐to‐treat analysis found RAS‐R scores to be similar between the intervention (mean = 84.7, SD= 15.6) and control (mean = 86.5, SD= 15.3) phases; the adjusted estimated difference in the mean RAS‐R score was −1.70 (95% confidence interval: −3.81 to 0.40; p =.11). Discussion: This first trial of an adapted mental health experience codesign intervention for psychosocial recovery outcomes found no difference between the intervention and control arms. Conclusions: More attention to the conditions that are required for eight essential mechanisms of change to support codesign processes and implementation is needed. Patient and Public Involvement: The State consumer (Victorian Mental Illness Awareness Council) and carer peak bodies (Tandem representing mental health carers) codeveloped the intervention. The adapted intervention was facilitated by coinvestigators with lived‐experiences who were coauthors for the trial and process evaluation protocols, the engagement model and explanatory model of change for the trial. [ABSTRACT FROM AUTHOR]

Japan's group homes, where usually three to seven people with disabilities live in a community residence, are gradually increasing in number as a residence for persons with disabilities. However, it remains unclear what challenges exist in opening and operating such homes, and how the challenges differ depending on the type of resident disability. A questionnaire survey was administered among corporations operating group homes for persons with disabilities (GHD) in Japan's Kanto region regarding issues during opening and operation of GHDs, as well as the condition of the buildings. The results revealed the following issues. First, in metropolitan areas such as Tokyo, it is difficult to construct or lease a building with sufficient space. Second, GHDs, where people with intellectual disabilities live, are often positioned as permanent residences. Furthermore, in GHDs where the residents primarily have physically disabilities, it is often difficult to achieve sufficient floor space. In addition, in GHDs primarily housing people with mental disabilities, they are often positioned as temporary residences prior to living alone in apartments, etc., and understanding from neighborhood residents constitutes a major issue. [ABSTRACT FROM AUTHOR]

Women with learning disabilities are less likely to breastfeed than other women. They may find it hard to understand or learn feeding techniques or know that they have infant feeding choices. This population may be supported during their pregnancies by a range of professionals with differing priorities and responsibilities towards both the mother and the baby. This puts considerable pressure on health care professionals including, but not limited to, midwives, infant feeding specialists, health visitors and learning disability nurses. Those who support women with learning disabilities through their journey into motherhood have a responsibility to ensure the women in their care have the information they need to make decisions about a range of issues, including infant feeding. In the absence of dedicated lactation consultants, this is one of many issues to be discussed within time‐limited appointments. Little is known about the experience of supporting women with learning disabilities to make infant feeding decisions from the point of view of health professionals. Using a qualitative descriptive research design, we conducted online, semistructured interviews with seven UK health professionals about their experience of supporting women with learning disabilities in infant feeding. Thematic analysis identified three themes: the importance of health professionals' having unconditional, positive regard; the need for an individualised approach to supporting women to make infant‐feeding decisions; and being part of the support network. This suggests that women with learning disabilities can make and put into practice infant feeding decisions if they have access to the right support at the right time. Key messages: With the right support at the right time, women with learning disabilities can make infant feeding decisions and successfully feed their babies.Infant feeding options should be discussed early in the pregnancy, with repetition and the use of accessible resources such as videos to support decision‐making.Breastfeeding should be considered a viable option for all women.Health professionals need to be flexible in their approach to supporting infant feeding decision‐making, working as part of the woman's circle of support.Accessible resources can be helpful in supporting infant feeding decision‐making, but one size does not fit all. [ABSTRACT FROM AUTHOR]

Background: Considering the rapid global movement towards inclusion for students with special educational needs (SEN), there is a surprising lack of pedagogical or didactic theories regarding the ways in which inclusive education may affect students with SEN. Group composition within the educational setting may play a role in determining the academic achievement, socio‐emotional development, and wellbeing of students with SEN. Proponents of inclusion propose that segregated educational placement causes stigmatisation and social isolation which may have detrimental effects on the self‐concept and self‐confidence of students with SEN. On the other hand, opponents of inclusion for all special needs students suggest that placement in general education classrooms may have adverse effects especially if the time and resources allocated for individualisation are not aligned with student needs. Since the 1980s, a number of reviews on the effects of inclusion have been published. Results are inconsistent, and several reviews point to a number of methodological challenges and weaknesses of the study designs within primary studies. In sum, the impact of inclusion on students with SEN may be hypothesised to be both positive and negative, and the current knowledge base is inconsistent. Objectives: The objective was first: To uncover and synthesise data from contemporary studies to assess the effects of inclusion on measures of academic achievement, socio‐emotional development, and wellbeing of children with special needs when compared to children with special needs who receive special education in a segregated setting.A secondary objective was to explore how potential moderators (gender, age, type and severity of special need, part or full time inclusive education, and co‐teaching) relate to outcomes. Search Methods: Relevant studies were identified through electronic searches in Academic Search Premier (EBSCO), APA PsycINFO (EBSCO), EconLit (EBSCO), ERIC (EBSCO), International Bibliography of the Social Sciences (ProQuest), Sociological Abstracts (ProQuest), Science Citation Index Expanded (Web Of Science), Social Sciences Citation Index (Web Of Science), and SocINDEX (EBSCO). The database searches were completed on 24 April 2021 and other resources: grey literature repositories, hand search in targeted journals and Internet search engines were searched in August/September 2021. The search was limited to studies reported after 2000. Selection Criteria: The review included studies of children with special needs in grades K to 12 in the OECD countries. Children with all types of verifiable SEN were eligible. Inclusion refers to an educational setting with a mixture of children with and without SEN. Segregation refers to the separate education of children with SEN. All studies that compared inclusive versus segregated educational settings for children with SEN were eligible. Qualitative studies were not included. Data Collection and Analysis: The total number of potentially relevant studies constituted 20,183 hits. A total of 94 studies met the inclusion criteria, all were non‐randomised studies. The 94 studies analysed data from 19 different countries. Only 15 studies could be used in the data synthesis. Seventy‐nine studies could not be used in the data synthesis as they were judged to be of critical risk of bias and, in accordance with the protocol, were excluded from the meta‐analysis on the basis that they would be more likely to mislead than inform. The 15 studies came from nine different countries. Separate meta‐analyses were conducted on conceptually distinct outcomes. All analyses were inverse variance weighted using random effects statistical models. Sensitivity analyses were performed to evaluate the robustness of pooled effect sizes across components of risk of bias. Main Results: The average baseline year of the interventions analysed in the 15 studies used for meta‐analysis was 2006, ranging from 1998 to 2012. The average number of participants analysed in the interventions was 151, ranging from 10 to 1357, and the average number of controls was 261, ranging from 5 to 2752. The studies included children with multiple types of disabilities such as learning disorders/intellectual disabilities, autism spectrum disorders, ADHD, physical handicaps, visual impairments, and Down syndrome. At most, the results from eight studies could be pooled in any of the meta‐analyses. All the meta‐analyses showed a weighted average that favoured the intervention group. None of them were statistically significant. The random effects weighted standardised mean difference was 0.20 (95% confidence interval [CI]: −0.01 to 0.42) for overall psychosocial adjustment; 0.04 (95% CI: −0.27 to 0.35) for language and literacy learning outcomes, and 0.05 (95% CI: −0.16 to 0.26) for math learning outcomes. There were no appreciable changes in the results as indicated by the sensitivity analyses. There was some inconsistency in the direction and magnitude of the effect sizes between the primary studies in all analyses and a moderate amount of heterogeneity. We attempted to investigate the heterogeneity by single factor sub‐group analyses, but results were inconclusive. Authors' Conclusions: The overall methodological quality of the included studies was low, and no experimental studies in which children were randomly assigned to intervention and control conditions were found. The 15 studies, which could be used in the data synthesis, were all, except for one, judged to be in serious risk of bias. Results of the meta‐analyses do not suggest on average any sizeable positive or negative effects of inclusion on children's academic achievement as measured by language, literacy, and math outcomes or on the overall psychosocial adjustment of children. The average point estimates favoured inclusion, though small and not statistically significant, heterogeneity was present in all analyses, and there was inconsistency in direction and magnitude of the effect sizes. This finding is similar to the results of previous meta‐analyses, which include studies published before 2000, and thus although the number of studies in the current meta‐analyses is limited, it can be concluded that it is very unlikely that inclusion in general increases or decreases learning and psychosocial adjustment in children with special needs. Future research should explore the effects of different kinds of inclusive education for children with different kinds of special needs, to expand the knowledge base on what works for whom. [ABSTRACT FROM AUTHOR]

De novo variants in DDX3X account for 1–3% of unexplained intellectual disability (ID) cases and are amongst the most common causes of ID especially in females. Forty‐seven patients (44 females, 3 males) have been described. We identified 31 additional individuals carrying 29 unique DDX3X variants, including 30 postnatal individuals with complex clinical presentations of developmental delay or ID, and one fetus with abnormal ultrasound findings. Rare or novel phenotypes observed include respiratory problems, congenital heart disease, skeletal muscle mitochondrial DNA depletion, and late‐onset neurologic decline. Our findings expand the spectrum of DNA variants and phenotypes associated with DDX3X disorders. [ABSTRACT FROM AUTHOR]

The communication of pain in individuals with co‐morbid Autism Spectrum Disorder and intellectual disability (ASD‐ID) is largely unexplored. The communication deficits associated with ASD‐ID can result in nonverbal behavior such as self‐injurious behavior, aggression, irritability, and reduced activity as a means to communicate that pain is present. The objective of this study was to determine whether a behavioral‐based educational intervention could increase the pain‐related communication of children with ASD‐ID who experience pain frequently. Specifically, the study aimed to determine if children with ASD‐ID can label the location of their pain or quantify pain severity and request pain relief. The sample included three children with ASD‐ID who experienced pain frequently. The intervention utilized educational materials and behavioral reinforcements and the intervention was conducted using a series of case studies. Pain was assessed daily by caregivers using the Non‐Communicating Children's Pain Checklist—Postoperative (NCCPC‐PV) and the ability of the individual to identify and express pain was recorded using the Wong Baker FACES Pain (WBFPS) Scale. Challenging behavior was recorded based on frequency count. The results indicated that all participants displayed the ability to independently respond to a question about how they were feeling by vocalizing the location of pain or indicating their level of pain on the WBFPS and requesting pain relief. The results suggest a role for behavioral‐based educational interventions to promote communication of pain in people with ASD‐ID. [ABSTRACT FROM AUTHOR]

This paper draws together about 20 years of research work and discovery and the development of a resource about pain assessment and management in children with profound cognitive impairment. The animation tells the story of an imagined child called Lily and the skills her mother uses and the challenges that her mother faces in assessing and managing Lily's pain. The animation is built on stories drawn from qualitative research findings, conversations while in clinical practice and with members of the general public, parent advisers and other sources. Most of the "evidence" came from stories shared by parents and healthcare professionals. This paper draws on some elements of socio‐narratology and is predicated on the basis that stories are important and they can act on and with us. By using an animation to tell Lily's story, the intention was to communicate research findings to a wider and more diverse audience than the typical readership of an academic journal. The intention was to act in and on people's consciousness about children's pain and to strengthen relationships and create bonds between clinicians, parents, and children in pain to make their dialog more social, connected, and meaningful. All three of us—the researcher, the writer, and the animator—have been marked and "re‐shaped" by our work related to creating Lily; we have learned more about children like Lily and their mothers, and we have learned more about ourselves and our humanity. This animation is still a story in progress, a story 'in the wild', a story (and a resource) we would like you to re‐tell and share. The story of Lily's pain aimed to change the lives of parents and children and professionals. Our hope is that you can be part of that change. [ABSTRACT FROM AUTHOR]

Introduction: Mental illnesses play a role in poor health outcomes. Mental health is just as vital as physical health for an individual's total well-being. Alterations in mental health can have a significant impact on all aspects of life, including school or work performance, relationships with family and friends, and community participation. As a result, we would like to provide an overview of psychosocial interventions that are available to improve the well-being of people with mental health conditions and map available studies on the effectiveness of interventions provided in framework. Methods: This Evidence Gap Map will feature systematic reviews of the effects of interventions and effectiveness studies that used either: (a) randomised experimental design, or (b) rigorous quasi-experimental design, (c) natural experiments, (d) regression discontinuity, (e) propensity score matching, (f) difference in difference, (g) instrumental variables, (h) and other matching design, (I) Single subject design. We will include qualitative studies, relevant working papers will also be included. Also, language restricted to english from any country will be reviewed for inclusion. Electronic Search will be conducted with the help of a relevant databases in our area of study. Outcomes: Will be focused mainly on the basis of community-based Rehabilitation matrix adapted from the comprehensive mental health action plan, 2013-2020. [ABSTRACT FROM AUTHOR]

Background. Health-related physical fitness is vital for children with intellectual and developmental disabilities (IDD) to gain healthier lives. The adapted rhythmic gymnastics (ARG) program was designed for children with IDD and is aimed at testing the effects of the exercise program on children's physical fitness. Methods. Participants were recruited from two special needs schools in Beijing of China. Twenty-two children with IDD were assigned to an ARG experimental group or a traditional control group. The experimental group took part in a 16-week ARG program consisting of three 50 min sessions each week. And children's body composition, aerobic capacity, and musculoskeletal functioning were measured by the Brockport Physical Fitness Test (BPFT) before and after the program. Results. The between-group analysis revealed great improvements for the experimental group in abdominal strength (curl-up test: p = 0.025 < 0.05) and upper limb strength (dumbbell press test: p = 0.038 < 0.05). Compared to the pretest, most of the physical fitness parameters improved significantly in the experimental group except BMI, and flexibility of the experimental group children showed a substantial increase. Conclusions. Most of the physical fitness parameters of children with IDD in the experimental group improved significantly, especially on abdominal strength and upper limb muscle strength when comparing to the control group. [ABSTRACT FROM AUTHOR]

Augmentative and Alternative Communication (AAC) techniques are employed to mediate communication with people who have communication disorders, as in cases of intellectual disability. Although there are various digital solutions that promote alternative communication options for individuals with communication disorders, only a few of them have been specifically designed or targeted to people with intellectual disability (ID). This work is motivated by the lack of AAC solutions contributing to the rehabilitation processes of individuals with intellectual disability in Brazil. The study presents a mobile-based AAC solution conceived as a tool to assist the rehabilitation process of people with ID. The design was based on user-centered design principles and accessibility standards. The System Usability Scale (SUS) questionnaire was used to evaluate the solution. Four specialists and twenty-five students participated in this study. The proposed solution shows the potential educational value for professionals who assist individuals with intellectual disability in Brazil. [ABSTRACT FROM AUTHOR]

Small supernumerary marker chromosomes (sSMCs) are a group of rare chromosomal anomalies, which pose challenges in the clinical practice of prenatal diagnosis and genetic counseling. This study enrolled an extended family with an underage male patient displaying infantile seizures, intellectual disability, and retarded speech and psychomotor function. A series of multiplatform genetic detections was conducted to explore the diagnostic variation. Whole exome sequencing (WES) and chromosomal microarray analysis (CMA) indicated a mosaic sSMC derived from the pericentromeric region of chromosome 8 in the patient, which was confirmed using cytogenetic methods. The proband and his mother, who carried this mosaic variant, exhibited strong phenotypic variability. We also ruled out the pathogenicity of a KDM5C variant by extended validation. Our results emphasized the capacity of WES to detect mosaic SMCs and the importance of mosaic ratios in the appearance and severity of symptomatic phenotypes. [ABSTRACT FROM AUTHOR]

A global response to Covid‐19 pandemic has triggered issues related to stress and social restrictions; thus, mental health is seen as a particular area of concern for social well‐being for both policymakers and corporate regulators/companies. Given that mental health intersects with most, if not all, of the 17 sustainable development goals (SDGs), this research brought to light issues surrounding employment of people with mental disabilities (PWMDs) and the financial merits of employing them. An online survey was administered to PWMDs to elicit what possible flexible opportunities could enable them to gain or stay at work. Interviews were also conducted with human resource managers and financial managers. Our results show that there are currently no flexible working opportunities available for PWMDs, which could enable them work effectively to improve both self and general economic growth. The findings of this study will enable employers to explore the financial benefits of employing PWMDs and also aid the government to create better policies to boost employers' commitment to employing PWMDs and achieve some of the UN SDGs. [ABSTRACT FROM AUTHOR]

Background: People with SMI have often been excluded in advocacy efforts focused on physical health, health care and health and social policy. Objective: Following a Photovoice project focused on barriers to healthy eating and physical activity in urban neighbourhoods, participant‐researchers were invited to present their insights in community advocacy settings. The purpose of this study was to explore the feasibility and participant–researchers' experience of these community advocacy activities. Design: We held four focus groups with the eight participant‐researchers after each community advocacy activity to explore their experience with public speaking, presenting their experiences and advocating. Setting and Participants: People with serious mental illness who were overweight/obese living in supportive housing. Analysis approach: Qualitative analysis of the focus group transcripts, using a modified grounded theory approach followed by structured coding focused on empowerment, participation and non‐discrimination. Results: Participant‐researchers gave three oral presentations of their photographs at a variety of community‐based programmes and settings and participated in a rally to advocate for SNAP benefits. Two themes emerged from analysis: (a) Empowerment (the level of choice, influence and control that users of mental health services can exercise over events in their lives) and (b) Barriers to Empowerment (obstacles to participation and well‐being). Conclusions: This evaluation strengthens the evidence that it is feasible for participant‐researchers in Photovoice projects to engage in robust advocacy activities, such as presentations and discussions with local policymakers. During focus groups, participant‐researchers demonstrated realistic optimism towards their roles as change agents and influencers in spite of acknowledged systemic barriers. [ABSTRACT FROM AUTHOR]

Circles, cuneiform-like shapes (or symbols) and words compose his works. Tsurukawa creates at a studio in Hyogo Prefecture, where people with intellectual disabilities attend. Circles, symbols, and words are repeated in the ample blank space, embracing differences, which leads to a polyphonic space whose rhythm is unique to Tsurukawa's works. [Extracted from the article]

Neurodevelopmental disorder caused by malformations of cortical development is a rare neurological disease. Heterozygous missense variants in the TUBG1 gene lead to malformations of human cortical development, which further result in intellectual disability, developmental retardation, and epilepsy. To the best of our knowledge, only thirteen patients and a total of nine pathogenic TUBG1 variants have been described in the published literature. This study reports the case details and genetic data analysis of a girl (aged 8 years, 9 months) with developmental delay, psychomotor regression, epilepsy, and left external ear deformity. A novel TUBG1 mutation was identified by whole-exome sequencing and Sanger sequencing, confirming that this mutation may be the cause of the neurodevelopmental disorders. This case report characterizes the phenotypic spectrum, molecular genetic findings, and functional consequences of novel pathogenic TUBG1 variants in neurodevelopmental disorders caused by cortical development malformations. [ABSTRACT FROM AUTHOR]

While some first names or last names are spelled the same, a pair of a first name and a last name is never repeated, so one can assume that he is not typing randomly. His works are diverse, including calligraphy, graphic design for imaginary book covers and DVD covers that are produced with a computer, and panel drawings featuring people - they nonetheless all share something in common, which is his interest in letters and fonts. Born in 2001, Yuki Kamitsuchibashi has been a member of Atelier Yamanami since 2020, a studio where people with intellectual disabilities or autism attend and create works. [Extracted from the article]

Objectives Precipitants of seizures are often reported by patients and carers, but the accuracy of these claims remains unknown. Focusing on epilepsy in people with intellectual disability ( ID), the aims of this work were to (1) identify a set of methods for assessing the validity of reported seizure triggers in individual patients; and (2) undertake an initial assessment of the ease of implementation and acceptability of the method by applying it to a series of cases. Methods Data collection materials (developed with carer involvement) consisted primarily of carer diaries of seizure and trigger occurrences. Statistical analysis of diary data was using the self-controlled case series method. Unlike previously used methods, the analysis method included a means of choosing the time window, following trigger exposure, during which changes in seizure likelihood are to be assessed. Results The method developed was trialed in five adults with ID and epilepsy, who had a range of ID severities and living circumstances. Examples of the application of the method in two of the five cases are presented for illustrative purposes. The method was acceptable to participants and most aspects successfully implemented. Significance This method may be useful for clinicians and researchers wishing to investigate possible triggers in individual patients with epilepsy and ID. It also supports the identification of a statistically defined time window following exposure to a precipitant, during which the risk of developing a seizure is increased. The identification of such a window has value not just in contributing to clinical management, but also in guiding future work into the mechanisms of seizure precipitation. [ABSTRACT FROM AUTHOR]

Iodine deficiency is the leading cause of preventable intellectual disability in the world, but it has been successfully prevented in most countries through universal salt iodization (USI). In 2011, Cambodia appeared to be an example of this success story, but today, Cambodian women and children are once again iodine deficient. In 2011, Cambodia demonstrated high‐household coverage of adequately iodized salt and had achieved virtual elimination of iodine deficiency in school‐age children. However, this achievement was not sustained because the USI programme was dependent on external funding, and the national government and salt industries had not institutionalized their implementation responsibilities. Recent programmatic efforts, in particular the establishment of a regulatory monitoring and enforcement system, are turning the situation around. Although Cambodia has not yet fully regained the achievements of 2011 (only 55% of tested salt was adequately iodized in 2017 compared with 67% in 2011), the recent steps taken by the government and the salt industry point to greater sustainability of the USI programme and the long‐term prevention of iodine deficiency in children, women, and the general population. [ABSTRACT FROM AUTHOR]

Recent advancements in molecular genetics raise the possibility that therapeutics or a 'cure' for Down syndrome ( DS) may become available. However, there are no data regarding how parents of children with DS perceive the possibility of mitigating specific manifestations such as the intellectual disability ( ID) associated with DS, or curing the condition entirely. To explore these issues, we distributed a questionnaire to members of the Lower Mainland Down Syndrome Society in British Columbia, Canada. Questionnaires were completed by 101 parents (response rate = 41%). A majority (61%) viewed the possibility of reversing ID in DS positively, but only 41% said that they would 'cure' their child of DS if it were possible. Twenty-seven percent of respondents said they would not 'cure' their child, and 32% were unsure if they would 'cure' their child. The most commonly cited motivation for opting for a 'cure' was to increase their child's independence. However, parental attitudes' towards a 'cure' for DS were complex, affected by ethical issues, perceived societal values, and pragmatic factors such as the age of the individual and long-term care-giving burden. These findings could be used by healthcare professionals supporting families who include a member with DS and to direct future research. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented that discusses familial intellectual disability.

AIMS The drug burden index (DBI) is a dose-related measure of anticholinergic and sedative drug exposure. This cross-sectional study described DBI in older adults with intellectual disabilities (ID) and themost frequently reported therapeutic classes contributing to DBI and examined associations between higher DBI scores and potential adverse effects as well as physical function. METHODS This study analysed data from Wave 2 (2013/2014) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a representative study on the ageing of people with ID in Ireland. Self- and objectively-reported data were collected on medication use and physical health, including health conditions. The Barthel index was the physical function measure. RESULTS The study examined 677 individuals with ID, of whom 644 (95.1%) reported taking medication and 78.6% (n = 532) were exposed to medication with anticholinergic and/or sedative activity. 54.2% (n = 367) were exposed to high DBI score (≥1). Adjusted multivariate regression analysis revealed no significant association between DBI score and daytime dozing, constipation or falls. After adjusting for confounders (sex, age, level of ID, comorbidities, behaviours that challenge, history of falls), DBI was associated with significantly higher dependence in the Barthel index (P = 0.002). CONCLUSIONS This is the first time DBI has been described in older adults with ID. Scores were much higher than those observed in the general population and higher scores were associated with higher dependence in Barthel index activities of daily living. [ABSTRACT FROM AUTHOR]

Aspiration of a foreign body into the tracheobronchial tree is rare in adults. In the majority of these cases there is an underlying condition such as mental retardation, depressed mental status, impairment in the swallowing reflex, neurological impairment, alcohol or sedative abuse, or complications from dental manipulations that contributed to the aspiration. These patients are commonly misdiagnosed with asthma and typically do not respond to mainstay anti-inflammatory and/or bronchodilator therapy. We describe the case of a patient with a foreign body aspiration in the upper trachea not recognized by radiographic studies that presented with asthma-type symptoms. [ABSTRACT FROM AUTHOR]

Objective: To systematically identify and synthesize peer‐reviewed qualitative evidence of the parental experience of hospitalization with a child with Intellectual Disability. Search strategy: Key words, synonyms and MeSH subject headings that related to the three key concepts of parental experience, children with Intellectual Disability and hospital settings were applied to six electronic databases: Medline, CINAHL, Embase, PsycINFO, Scopus and Web of Science. Titles and abstracts of publications between January 2000 and February 2019 were screened for relevance. Inclusion criteria: Empirical qualitative research involved participants aged 0‐18 years, involved children with Intellectual Disability, involved participants hospitalized as an in‐patient and involved participants focused on parent perspective. Data extraction and synthesis: Data were extracted and synthesized using a meta‐narrative approach. Results: Eleven publications met the inclusion criteria. Data synthesis revealed three research traditions contributing to this meta‐narrative: Paediatric Nursing Practice, Intellectual Disability Healthcare and Patient Experience. A total of five themes were identified: (a) being more than a parent, (b) importance of role negotiation, (c) building trust and relationships, (d) the cumulative effect of previous experiences of hospitalization and (e) knowing the child as an individual. Discussion and conclusion: This review presents a working model for professional‐parent partnership for the safe care of children with Intellectual Disability in hospital. Shifting paediatric healthcare to whole of hospital/multidisciplinary models of care that centre on the child will necessitate partnerships with the parent to identify and manage the needs of the child with Intellectual Disability, in order to achieve safe and equitable care for these children. [ABSTRACT FROM AUTHOR]

Background: Parent experiences of caring for children with neurodevelopmental disease have been silenced and constrained by social, political and health influences. There is a need to co‐construct new meanings and interpretations of parenting a child with complex disabilities by having an increased understanding of the struggles and barriers for parents. Methods: A hermeneutic phenomenology approach was applied in this inquiry. Fifteen parents of children with rare neurodevelopmental diseases participated in semi‐structured interviews. Results: Parents experienced silencing or being silenced within interactions with health‐care and social care systems and providers. Interpretive thematic analysis revealed three insights: (a) parents experience a sense of disconnect and silencing as little is known or understood by health‐care providers about the experience of caring for children at home; (b) parents make strong efforts to be heard and acquire services within health and social systems as fighters, saviours and navigators; and (c) parents sacrifice themselves to the caregiving role and become therapists and caregivers to their medically fragile children at the cost of losing themselves as parents. Conclusion: An understanding of parents' experiences in caring for a child with a rare neurodevelopmental disease may provide insight to systemic health and social support challenges faced by families and mitigate appropriate and supportive policies and services. [ABSTRACT FROM AUTHOR]