Search

Background: Attitudes towards intellectual disability play an important role in the social inclusion and well-being of persons with intellectual disability. Few studies have examined attitudes of staff working in the specialised service industry, which may have an even greater impact. This study aimed to better understand these attitudes. Methods: A sample of 157 direct support professionals and 38 managers working with persons with intellectual disability completed the Attitudes Toward Intellectual Disability Questionnaire (ATTID; Morin, Rivard, et al. (2013). "Journal of Intellectual Disability Research," 57, 279-292). Attitudes were assessed along affective, cognitive, and behavioural dimensions. Results: Results revealed generally positive attitudes in both groups, but more paternalistic attitudes among managers and less positive attitudes in the general population. Positive attitudes were associated with level of education, frequency and quality of contact, and knowledge about intellectual disabilities. Conclusion: Workplace training programs addressing the aetiology of intellectual disability and interventions promoting self-determination may help enhance staff attitudes towards intellectual disability.

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

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

Background: There is established evidence of complicated grief among people with an intellectual disability. This paper describes the process of adapting complicated grief therapy (CGT) for this population. Method: Action research documented the adaptation of CGT. Qualitative methods included analysing meeting notes, reflective interviews with two members of the team involved in adapting the materials, and interviews with six professionals working in disability settings who reviewed the adapted materials. Results: Key processes included adapting the standardised tools that form part of CGT and developing adapted approaches to abstract concepts related to death, dying and bereavement. Key therapeutic components such as imaginal revisiting and the role of significant others required adaptation for implementation with people with intellectual disabilities. Conclusion: The importance of adapting evidence-based therapies for people with intellectual disabilities is emphasised. This research provides an adapted form of an established therapy for piloting with this population.

Background: There is a paucity of theory-informed physical activity research with adults with intellectual disabilities. This study aimed to address this by synthesising existing literature and applying the COM-B model to understand capabilities, opportunities and motivations. Methods: A qualitative evidence synthesis was conducted and reported in accordance with PRISMA guidelines and the ENTREQ. Three databases were systematically searched up to and including February 2022. Qualitative research relating to the physical activity of adults with intellectual disabilities were included. Thematic synthesis was conducted with themes mapped onto the COM-B model. Results: Twenty-five studies were included. Influences of physical activity were identified and mapped onto the COM-B model, which also included COM-B influences of social support provided by caregivers. Conclusions: There are many complex influences of physical activity for adults with intellectual disabilities. Researchers should consider the influences contributing to caregivers' capacity to support physical activity.

Background: This exploratory study aimed to enhance the understanding of practitioners' experiences within LGBTQ+ community organisations when providing interventions for LGBTQ+ individuals with intellectual disabilities. Three specific objectives were outlined: to document the situations and challenges encountered by practitioners; to identify perceived needs among LGBTQ+ individuals with intellectual disabilities and to elicit their suggestions for recommendations to improve services. Method: A qualitative approach, involving in-depth interviews with 12 Québec-based LGBTQ+ community practitioners, underwent content analysis. Results: Findings were organised around three themes: perceived support needs of LGBTQ+ people with intellectual disabilities; challenges experienced in intervention and recommendations to improve services. Findings reveal that practitioners frequently face significant challenges when supporting LGBTQ+ individuals with intellectual disabilities, who often struggle with multiple daily challenges and insufficient support. Conclusions: The study highlights the need to empower LGBTQ+ organisations with essential skills and foster partnerships with public service staff to ensure a more inclusive, intersectional approach.

Background: Services for adults with intellectual disabilities in Hong Kong have a hierarchical staffing structure. Professional social workers, who performed as mid-level employees, work with frontline support workers to deliver services to clients. Methods: This qualitative study explored social workers' experiences of working with support workers through in-depth interviews with 13 participants. Findings: The study revealed that social workers perceived a significant variation between themselves and support workers in terms of working motivation, values and attitudes towards clients with intellectual disabilities. Despite the hierarchical relationships, social workers and support workers share the power of service decision-making. Social workers used firm and gentle approaches to facilitate changes in practices to uphold service values. These findings were compared with Western literature on this topic, indicating similarities and differences. Conclusion: The organisations need to facilitate an effective collaboration between social workers and support workers to enhance the quality of services for adults with intellectual disabilities in Hong Kong.

Background: Many people view people with intellectual disability primarily as needing help. That perspective limits relationships and can promote discrimination. We sought to better understand social relationships among young adults with intellectual disability. Method: Seven postsecondary students with intellectual disability participated in a photovoice study, sharing photos and stories about giving and receiving help. They participated in individual interviews, a group meeting, and a photo exhibition, and helped identify results and conclusions. Results: Participants viewed themselves as helpers and recipients of help. Themes were: foundational importance of families; openness to being helped; personal growth through challenging experiences; and tension between wanting to help and risks of helping others. Participants wanted to raise awareness that people with disabilities can help others, educate them about disability, and contribute to research. Conclusions: Many young adults with intellectual disability want to contribute to relationships, which are often limited by others' expectations about disability.

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

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

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

Background: Talking therapy for people with intellectual disabilities is often specifically adapted. One adaptation is the involvement of significant others in therapy, however, there is no systematic description of the use of this adaptation in routine clinical practice. Method: An online survey of UK psychologists regarding the inclusion of significant others in individual therapy with people with intellectual disabilities. Data were analysed using qualitative content analysis. Results: Ninety-five psychologists who work with people with intellectual disabilities provided responses to questions regarding the decision to include significant others in therapy, factors that make including significant others more or less likely and how the role of significant others is explained to them. Conclusions: Psychologists consider a range of factors in deciding the involvement of significant others. We discuss implications for training of therapists working with people with intellectual disabilities, issues of consent and how the roles of significant others are understood.

Background: The review aimed to investigate the effectiveness of parent-child relationship interventions for families of children with intellectual disability up to 12 years old. Methods: Quasi-experimental or randomised controlled trials (RCTs) of interventions targeting the parent-child relationship where =50% of children had an intellectual disability were included. Meta-analyses of parent-child relationship outcomes and child outcomes used standardised mean difference as the effect size. Results: Twenty-seven papers were included (N = 1325). Parent-child relationship outcomes improved significantly (n = 1325; g = 1.08, 95% CI: 0.64, 1.52) with a large effect size that was robust to sensitivity analyses. Child developmental outcomes improved significantly (n = 1082; g = 0.65, 95% CI: 0.23, 1.07), and indicated a large effect size for child socialisation and communication. Conclusions: Findings suggest that interventions targeting parent-child relationship quality are associated with substantial improvements in parent-child relationship and may improve child outcomes related to socialisation and communication.

Background: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. Method: Caregivers (n = 405) of individuals with intellectual and developmental disabilities across four states (NY, OH, TX, and PA) completed an online survey. Results: Caregivers reported a moderate degree of burden and susceptibility of stress-induced health breakdown. Despite controlling for the activities of daily living of the care recipient, caregivers of individuals with Medicaid Waiver services reported greater difficulty managing medications (p = 0.013) and finding paid help (p < 0.001) than caregivers of individuals without services.

Background: Tailored sexuality education for adolescents with intellectual and developmental disabilities is a crucial, yet unmet, need as this population is particularly at risk for sexual abuse and victimisation. However, there are no evidence-based interventions to specifically address this need. This paper presents the development of an intervention framework to address equity in sexuality education and support adolescents with intellectual and developmental disabilities to understand and provide sexual consent, a foundational aspect of sexuality education and sexual health. Methods: The Sexual Health Equity Project team used a Community-Based Participatory Research approach to develop a four-module sexual consent intervention for adolescents with intellectual and developmental disabilities. We leveraged a diverse, interdisciplinary team in a suburban Midwestern school district, and used Backward Design to create objectives and assessments which were rooted in findings from qualitative data by special education teachers. Results: The resulting sexual consent intervention, "Ask Me First--Choices," is comprised of four modules covering topics including definition of sexual consent; decision-making strategies and practice; communicating consent and refusal, identifying situations of consent and non-consent; and legal issues surrounding consent. Each module is divided into five components for content delivery: (1) introduction, (2) lecture, (3) supplemental activity, (4) assessment, and (5) conclusion. We detail the intervention's unique aspects, emphasising areas where we used Universal Design for Learning principles to support teachers' instruction and students' learning. Conclusion: Our efforts to create a sexual consent intervention directly address sexuality education equity issues. We offer commentary on our design process and decisions, as well as recommendations for future groups who want to develop sexual health interventions in similar contexts for students with intellectual and developmental disabilities. Next steps include further testing and validation of the sexual consent intervention to build the evidence-base of sexuality education for adolescents with intellectual and developmental disabilities.

Background: Children with intellectual and developmental disabilities are at a higher risk of developing dental caries. Few scoping reviews have been conducted in India to understand their issues. We aimed to summarise the distribution and risk factors of dental caries among children and adolescents with intellectual disabilities in India. Methods: A scoping review was conducted based on the Arksey O Malley framework. Quality assessment of studies, descriptive and thematic analyses were also conducted. Results: We charted, collated, and summarised from four databases. Thirty-one studies met the study criteria consisting of children and adolescents with intellectual disabilities. Median caries prevalence was 70%, decayed missing and fIlled permenant teeth (DMFT) was 2.4, decayed missing and filled decidous teeth (dmft) was 2.36, and DMFS was 3.7. Major determinants were the severity of disability, socioeconomic status and parents' education. Oral care and dental visits were inadequate. Conclusion: Further exploration is required to improve access and reduce caries experience and prevalence among children with intellectual and developmental disabilities in India.

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

Background: Research suggests that a better awareness of how staff who directly support people with intellectual disabilities experience their working relationships, will contribute to understanding staff wellbeing and the quality of care they offer. This study aimed to gain insights into the lived experiences of support workers in supported living services in England. Method: Six support workers participated in semi-structured interviews, about their working relationships with service-users and colleagues. Data was analysed using interpretative phenomenological analysis. Results: Six interconnected themes emerged: The essence of good relationships; a trusting relationship as the vehicle for meeting service-users' needs; belonging to the support team; the organisational context of relationships; the social context of relationships; 'a fine balancing act'. Conclusions: The findings provide insights into staff wellbeing, indicating that developing supportive, trusting relationships with both service-users and colleagues, plays an important role in delivering effective care. Potential implications for service providers are discussed.

Background: Measurement instruments to understand self-determined motivation towards physical activity among college students with intellectual disabilities are needed to develop programs to support physical and psychological health and well-being. The purpose of the current study was to validate a modified questionnaire measuring basic psychological needs towards physical activity among college students with intellectual disabilities. Methods: A total of 108 college students with intellectual disabilities completed the modified questionnaire. Validity and reliability of the questionnaire was examined. Results: Confirmatory factor analysis demonstrated a six-factor model had good model fit. Cronbach's alpha values showed acceptable reliability evidence of the instrument as a whole, although some alpha values in subdomains of the instrument were below acceptable values. Conclusion: The modified questionnaire was found to have acceptable validity evidence. Further studies are needed with refinement of answer options and the addition of more questions to increase reliability.

Background: Despite the increased risk for people with an intellectual disability developing dementia, post-diagnostic psychosocial supports such as cognitive stimulation therapy (CST) are not routinely offered and there is limited research examining this intervention with people with intellectual disabilities. The aim of this study was to explore the feasibility of CST for older adults with intellectual disability to support active ageing. Methods: Five client participants attended a 14-session CST group and four staff attended a focus group. Reflexive thematic analysis was used to investigate the client and staff narratives. Results: Three key themes were generated--(1) Brain Health, (2) Connecting with others, and (3) Barriers and Enablers. Conclusion: Findings indicated the suitability of CST as a way of supporting active ageing for older adults with intellectual disability. This study adds to the growing knowledge about service provision for older adults and their changing needs as they age and identifies clinical implications such as staff training to support intervention adherence.

Background: Valid and reliable instruments for measuring emotional development are critical for a proper diagnostic assignment in individuals with intellectual disabilities. This exploratory study examined the psychometric properties of the items on the Scale of Emotional Development--Short (SED-S). Method: The sample included 612 adults with intellectual disabilities (M[subscript age = 37.35, SD[subscript age] = 13.27; 59.8% males). Item validity analysis comprising sensitivity and specificity rates and discriminatory power were determined. Results: The relative mean frequency of 'yes' answers to all 200 items was 29.5%. The mean sensitivity rate was 67.5% and the mean specificity rate was 79.3%. Most items (85.0%) showed good discriminatory power with the adjacent stage(s), especially between SED-1, SED-2, SED-3 and SED-4. Particularly in SED-4 some items showed weaknesses in the differentiation between these stages. Discussion: This study adds to previous validation studies by showing that most SED-S items have psychometrically sound properties.

Background: Stepping Stones Triple P (SSTP) is a complex parent-mediated intervention aimed to reduce behaviours that challenge in children with moderate to severe intellectual disabilities, aged 30-59 months. Methods: To formulate a comprehensive understanding of SSTP implementation in the UK, we conducted a process evaluation collecting stakeholder views and considering intervention fidelity, dose, reach, delivery adaptations, and acceptability. Results: Fidelity and quality of delivery ratings were high. Parents perceived SSTP as valuable, reporting increased parental confidence and understanding of the child's behaviours. However, only 30% of families received an adequate dose of the intervention. Parents who only received treatment as usual described feeling abandoned by current services. Service managers emphasised the importance of availability of resources and therapist training for successful intervention delivery. Conclusions: SSTP supports effective management of early-onset behaviours that challenge. Further work is needed to ensure equitable access to the intervention across health and social care services.

Background: Shared housing for adults with intellectual disabilities with staff support, is a common housing model internationally. We explored an overlooked aspect of group homes, namely the extent to which they enable a sense of 'feeling at home' for residents. Method: A diverse group of 19 housemates participated in a photovoice study. Participants took photos in their homes and discussed them in individual interviews and in groups. Data was analysed using reflexive thematic analysis. Results: Residents' experience of home was multi-dimensional. 'Feeling at home' related to home as a site of identity cultivation (personal home); physical comfort or 'misfitting' (physical home) and home as the locus of key relationships (social home). Conclusion: Achieving a sense of 'feeling at home' requires engagement in practices of home-making. Many of our participants required support from staff to engage in these practices. For some housemates their experience of home was conditional and precarious.

Background: India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India. Methods: A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach. Results: The synthesis found five themes representing family carers' experiences and perspectives. These were 'resilience and acceptance', 'parental response', 'care dynamic', 'preparing for transition to adulthood' and 'parental advocacy'. Conclusion: Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences.

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

Background: Individuals with intellectual disabilities experience barriers to quality healthcare. To reduce this disparity, equipping medical trainees with the knowledge and skills required for treating this patient population is critical. Our aim is to describe the breadth of instructional interventions and identify gaps in intellectual disability medical education curricula. Method: Using scoping review methods, the intellectual disability programmes described in 27 articles were evaluated and their coverage of the six core competencies on disability for health care education was examined. Results: The most frequently represented core competencies were disability conceptual frameworks, professionalism and communication, and clinical assessment, which were, in most programmes, fulfilled by activities involving individuals with intellectual disabilities. Uneven competency coverage warrants consideration. Conclusions: Considerable variabilities exist in medical school curricula on intellectual disabilities. Using core competencies on disability for health care education for curricular design and evaluation would provide a coherent training experience in this important area.

Background: Children with intellectual disability are less physically active and more sedentary than typically developing peers. To date no studies have tested the feasibility of a school-based walking intervention for children with Intellectual Disability. Method: A clustered randomised controlled trial (cRCT), with an embedded process evaluation, was used to test the feasibility of a school-based walking intervention. Eight schools (n = 161 pupils aged 9-13 years) were randomised into either an intervention arm or an 'exercise as usual' arm. Measures included physical activity, physical fitness and emotional wellbeing. Baseline and 3-month follow-up data were collected. Results: The 'Walk Buds' intervention was found to be acceptable to teaching staff and pupils, with an uptake rate of the walking sessions offered of 84%. Conclusion: A number of challenges were experienced, relating to the COVID-19 pandemic, and difficulties collecting accelerometer data. Barriers, facilitators and required changes identified through the mixed methods process evaluation are discussed.

Background: Building 'key skills' may help prevent the development of challenging behaviour in children with an intellectual disability. The aim of this paper was to extend the current limited evidence in this area. Method: We undertook two studies with children with an intellectual disability in school settings: (1) a cross-sectional replication study exploring the relationship between 'key skills' and challenging behaviour. (2) a longitudinal study follow-up exploring change in 'key skill' levels and challenging behaviour. Results: The replication study recruited 74 participants, those scoring lowest in 'key skill' had a 94% chance of having challenging behaviour; those with the highest scores had a 6% chance. The follow-up study recruited 39 participants, we found a significant increase in children's 'key skill' level (p < 0.001) and a decrease in their challenging behaviour (p = 0.046). Conclusion: Building 'key skills' in children with an intellectual disability may help reduce or prevent challenging behaviour.

Background: People with intellectual disabilities are rarely involved in research on quality of life. The study sought to answer the question: what do people with intellectual disabilities believe improves or hinders their quality of life? Method: Using an inclusive, accessible research design, 18 participants met in small groups to answer the study's question using their choice of arts-based media. Participants completed the analysis collaboratively, identifying key themes among their responses. Results: The participants concluded that supports, well-being, hobbies, and activities contribute to quality of life. Lack of accessibility, assumptions, negative behaviours, stress, and negative people (staff, roommates, people in general) were identified as detractors of quality of life. Conclusions: To continue to make progress in improving the quality of life of individuals with intellectual disabilities, the voice of those with intellectual disabilities is key. The results suggest key areas of focus to make these improvements.

Background: Previous research identifies organisational culture as one of a number of factors associated with the quality of life outcomes of group home residents' with intellectual and developmental disabilities. This study aims to elaborate on the dimensions of group home culture in settings in England. Method: Participant observations and semi-structured interviews with staff were carried out in two group homes. Field-notes, interview notes and transcripts were analysed using inductive thematic analysis by a researcher naïve to the project and the previous literature. Initial coding was re-examined after sensitisation to theorised models in previous literature to identify the most parsimonious fit. The two settings were rated and compared using a five-point Likert scale for each of the dimensions. Results: The findings describe group home culture across seven dimensions. There were mixed ratings across the different dimensions reflecting inconsistencies in culture that were reflected in staff practice. The challenge in assigning a global rating of culture in group homes, which includes interactions across multiple staff and multiple residents over time, was highlighted. Conclusion: The development of an observational measure of culture is highlighted as potentially helpful in understanding and responding to culture in services for individuals with intellectual and developmental disabilities.

Background: The Reducing Disability in Alzheimer's Disease in Kansas City (RDAD-KC) intervention has been shown to improve the health of individuals with dementia and caregiver dyads. This manuscript reports the results of implementing the RDAD among individuals with intellectual disabilities and caregiver dyads. Methods: Nine community agencies deployed the 12-week intervention. We assessed changes in individuals with intellectual disabilities' behavioural symptom related severity and physical activity, and caregivers' behavioural symptom-related distress, unmet needs, and caregiver strain. Results: Forty-four dyads enrolled, and 23 (~60 years, 48% female) completed [greater than or equal to] 75% of the intervention. We observed decreases in behavioural symptom related severity (p = 0.07) and increases in physical activity (p = 0.20) among individuals with intellectual disabilities. We also observed decreases in behavioural symptom related distress (p = 0.14), unmet needs (p = 0.50), and caregiver strain (p = 0.50) among caregivers. Conclusions: The RDAD-KC intervention showed promising, although statistically non-significant, benefits among individuals with intellectual disabilities and their caregivers.

Background: While barriers to participation in physical activity are well documented, there is no consolidated evidence on strategies promoting participation of people with intellectual disability in physical activities. Methods: We conducted a scoping review to examine initiatives used to facilitate the inclusion of people with intellectual disability in community-based sporting and recreation activities. We searched Medline, Embase, CINAHL+ and PsycINFO for articles published in English between 2000 and 2022. Results: Eight articles were included. Initiatives included: (1) building knowledge, awareness and attitudinal change (2) organisational alliances/partnerships (3) relationship-building (4) modifications/adaptions to activities/environment (5) organisational policy (6) engagement with people with disability. Initiatives were implemented through international collaborations, in local fitness/recreational facilities and public spaces, and targeted athletes, coaches, volunteers and organisational leaders. Conclusion: While some increase in awareness and inclusion of people with intellectual disability was reported, no longitudinal data reported on the impact of initiatives on sustained social inclusion for people with intellectual disability.

Background: Research into befriending for people with intellectual disabilities is limited. This study aimed to explore the impact, mechanisms of change, and limitations of a befriending scheme for adults with intellectual disabilities and/or autism. Methods: Participants were recruited using convenience sampling. Thirteen individuals with intellectual disabilities and/or autism were interviewed and data thematically analysed. Results: Four themes were generated: 'Something fun for me'; 'A good connection'; 'Increasing independence'; and 'A life less quiet'. Befriending had direct benefits through the activities undertaken and the befriending relationships themselves being fun and reducing isolation. Befriending facilitated belonging, improved access to mainstream activities, and fostered independence by providing safety and support. The importance of shared interests and external support for the relationship was highlighted. Conclusions: Positive outcomes of befriending were found, supporting existing literature and revealing new information from the voices of participants with intellectual disabilities themselves.

Background: Static and dynamic balance skills can be related to the activities of daily living (ADL) in children with non-syndromic intellectual disabilities, and the type of balance skills affecting ADL can differ depending on the domain of ADL (self-care, mobility, and social function). Methods: The ADL capabilities of 66 children with intellectual disabilities were assessed using the Pediatric Evaluation of Disability Inventory (PEDI) and were examined in relation to static and dynamic balance skills. Results: Significant positive correlations were found between the one-leg standing and PEDI (r = 0.841 for self-care, r = 0.700 for mobility, and r = 0.760 for social function). Our analysis showed that static balance skills affected self-care, dynamic balance skills affected mobility, and intelligence quotient affected social function. Conclusions: Improving balance skills is important for enhancing ADL capabilities, and the type of balance skills that need enhancement vary based on the domain of ADL.

Background: The Fragile X community has expressed a desire for centralised, national guidelines in the form of integrated guidance for Fragile X Syndrome (FXS). Methods: This article draws on existing literature reviews, primary research and clinical trials on FXS, a Fragile X Society conference workshop and first-hand experience of clinicians who have worked with those living with FXS over many years. Results: The article scopes proposed integrated guidance over the life course, including appendices of symptoms, comorbidities and referral options for FXS and Fragile X Premutation Associated Conditions. Conclusion: Integrated guidance would provide an authoritative source for doctors, health professionals, therapists, care workers, social workers, educators, employers, families and those living with FXS, so that a holistic, person-centred approach can be taken across the United Kingdom to garner the best outcomes for those with FXS.

Background: Only about 9% of individuals with intellectual disabilities reach the government's physical activity (PA) recommendations. Combining gamification and technology seems particularly promising in overcoming personal and environmental barriers to PA participation. Method: Eighteen adults with varying levels of intellectual disabilities completed a pilot study to assess the initial effects of a cycling gamification intervention on levels of PA, fitness, psychosocial outcomes, and challenging behaviours. The study comprised three designs: pre-post single group, AB single-case, and qualitative. Social validity, implementation barriers and facilitators were also explored. Results: Nearly all 18 participants cycled daily. Time and distance cycled daily increase during the intervention while a decrease in stereotyped behaviours was observed. Participants and staff found the intervention enjoyable and socially valid. Conclusions: Results of the multiple-design study suggest that gamification interventions may be a suitable, enjoyable, and promising way to contribute to PA participation of adults with intellectual disabilities.

Background: Knowledge about how disability professionals understand ableism may provide insight into the production of inequalities. The aim of this study was to examine how disability professionals understand ableism. Methods: We asked 347 disability professionals, all of whom worked with people with intellectual and developmental disabilities, among other populations, to define ableism and then analysed those definitions using content analysis. Results: The themes about how participants understood ableism were--discrimination; differential treatment; individualization; norms and othering; ableist language; microaggressions; and systems and environments. It was also not uncommon for participants to say ableist things, and express misconceptions in their definitions. This included these themes: avoiding disability; using ableist language; framing disability as in/ability; centring people without disabilities; ignoring invisible disabilities; believing only people without disabilities have bias; and believing ableism does not exist. Conclusions: Knowing disability professionals' understandings of ableism is necessary to intervene biased attitudes and reduce ableism.

Background: The benefits of friendships among peers with and without intellectual and developmental disabilities are well supported by research. However, little is known about the nature of these inclusive friendships in inclusive college courses. Method: We explored the perspectives of peers on the development of authentic friendships among peers with and without intellectual and developmental disabilities in inclusive college courses in the United States. We used a sequential, explanatory, transformative mixed methods-grounded theory research design. We integrated quantitative (N = 44) and qualitative (N = 8) findings using blended analysis to inform a preliminary grounded theory of inclusive and reciprocal friendships. Results: Quantitative findings suggest two relationships and one predictor of peers' perceived social engagement. Qualitative findings resulted in five themes that promote friendships. Conclusions: We propose that the context for developing inclusive friendships could be fostered using the preparation and actions stages of the grounded theory model.

Background: Individuals with severe motor and intellectual disabilities have become an aging population, and high cancer morbidity and mortality are critical issues affecting their survival. Cancer screening is a crucial method of resolving this issue; however, a suitable screening method for them has not been established. Methods: We used ultrasonography alone and performed breast cancer screening for women over 30 years old in our facility from 2016 to 2023. We observed the outcomes and calculated the recall/detection rate in this screening. Results: Three cases among 379 tested positive in this screening, all of which underwent radical surgery. They are alive and well without relapse present. We detected these breast cancer cases with a low recall rate. Conclusion: We were able to successfully detect breast cancer cases using ultrasonography alone. Ultrasonography is an effective and feasible tool for breast cancer screening in individuals with severe motor and intellectual disabilities.

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

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

Background: Virtual mindfulness may be helpful for individuals with intellectual disabilities in the context of COVID-related disruptions of in-person programming, such as Special Olympics (SO). This study examined the feasibility of a virtual mindfulness intervention for SO athletes and their caregivers. Method: SO athletes (n = 44) and their caregivers (n = 29) participated in a 6-week adapted virtual mindfulness intervention. Athletes completed mindfulness and well-being questionnaires prior to, immediately following, and 3-months post-intervention. Caregivers completed questionnaires assessing their own stress, mindfulness, and well-being, as well as athlete mental health. Exit interviews were conducted immediately following the intervention. Results: The intervention was feasible in terms of demand, implementation, acceptability, and limited testing efficacy. There were significant improvements in athlete well-being and mental health, and caregiver stress and mindfulness post-intervention. Conclusions: Adapted virtual mindfulness groups may be an effective intervention in improving the well-being of adults with intellectual disabilities and their caregivers.

Introduction: This study investigated the reliability and validity of the dynamic risk outcome scales--short version (DROS-SV). This instrument is developed to monitor treatment progress using dynamic risk factors in clients with mild intellectual disabilities or borderline intellectual functioning and behavioural and/or mental health problems. Method: Data were collected from 264 clients who received Flexible Assertive Community Treatment (FACT), a form of intensive outpatient treatment. Results: A principal component analysis showed that there were six components explaining 73.9% of the variance. Furthermore, the DROS-SV showed good internal consistency of its subscales and total score ([alpha] > 0.78). Correlating the DROS-SV with the Historical and Clinical subscales of the Historical, Clinical and Future--30 indicated convergent and divergent validity. Discussion: The DROS-SV has good psychometric properties for measuring dynamic risk factors in clients with mild intellectual disabilities or borderline intellectual functioning in FACT teams.

Background: To build capacity among people with intellectual and developmental disabilities to become co-researchers they need the opportunity to learn about research. Method: An inclusive research team developed an online training to support people with intellectual and developmental disabilities to serve as co-researchers. Seven participants were recruited as pilot trainees. The co-researcher training consisted of two 1-h training sessions. Pre- and post-surveys and a focus group were conducted to examine participant experiences with the co-researcher training. Results: The participants were actively engaged during the co-researcher training sessions and shared they had a positive experience with it. They expressed that people with intellectual and developmental disabilities add value to the research team because of their lived experiences. Conclusion: The co-researcher training can instill a baseline level of knowledge about research in people with intellectual and developmental disabilities, and can be adjusted for different types of research in different settings and organisations.

Background: People with intellectual and developmental disabilities are among the most underserved in an inequitable healthcare system. Methods: Using Arksey and O'Malley's methodology and a social determinants of health framework, we conducted a scoping review of literature on the state of practice in education of healthcare professionals in the health and healthcare needs of this population. Results: Searches found 4948 articles, with 182 included in the final review. Themes identified included gaps of not being informed by workforce needs, continued use of the medical model of care, not addressing intersectionality with racial/ethnic and other discriminations, and lack of involvement of the population in developing/evaluating programs and promising trends of development of competency-based interprofessional programs with experiential learning. Conclusion: We provide recommendations for best practices in a concerted effort to educate a healthcare workforce equipped with the knowledge and skills to address the health needs of this population.

Background: A multi-phase Canadian study was conducted as part of a large-scale community and academic research partnership focused on understanding and improving the employment experiences of people with intellectual disabilities. Method: This multi-method study utilized a sequential approach, using findings from qualitative interviews (n = 28) to inform an online survey (n = 149). Participants were invited to share their experiences with paid employment or with persons with intellectual disabilities. Results: Thematic analysis of data across interview and survey findings resulted in six themes: (1) assumptions and attitudes, (2) knowledge and awareness, (3) accessibility of processes, (4) use of accommodations, (5) workplace relationships, and (6) supports and resources. Conclusions: A holistic and systemic approach has the potential to improve inclusive employment experiences of people with intellectual disabilities. Action is needed mainly at the policy and employer level to reduce barriers and improve on facilitating measures reinforced by the themes shared in this study.

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

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

Background: People with intellectual disabilities may experience frailty earlier than the general population. This scoping review aimed to investigate how frailty is defined, assessed, and managed in adults with an intellectual disability; factors associated with frailty; and the potential impact of COVID-19 on frailty identification and management. Method: Databases were searched from January 2016 to July 2023 for studies that investigated frailty in individuals with intellectual disabilities. Results: Twenty studies met the inclusion criteria. Frailty prevalence varied between 9% and 84%. Greater severity of intellectual disability, presence of Down syndrome, older age, polypharmacy, and group home living were associated with frailty. Multiagency working, trusted relationships and provision of evidence-based information may all be beneficial in frailty management. Conclusion: Frailty is common for people with intellectual disabilities and is best identified with measures specifically designed for this population. Future research should evaluate interventions to manage frailty and improve lives.

Background: NHS England's "Transforming Care" agenda aims to reduce the number of adults with intellectual disabilities and autistic adults in mental health hospitals. The aim was to understand the demographic and clinical characteristics of those most at risk of admission. Method: A cohort, retrospective study of adults using community intellectual disability services in the North West of England from 2018 to 2022 was undertaken. Results: We compared 211 adults at imminent risk of admission to a mental health hospital and 249 at significant (but not imminent) risk on a validated risk stratification tool. Individuals at significant risk were more likely to have moderate intellectual disability. Individuals at imminent risk were more likely to have diagnoses of mild intellectual disability, autism, personality disorder, or psychosis. Conclusion: By furthering our understanding of the clinical characteristics of those most at risk of admission, the findings inform more appropriate targeting of resources.