The role of motivation in shaping social inclusion of people with intellectual disabilities in physical-sports activity contexts.

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 (ßself = 0.07 vs. ßproxy = 0.30). The tested model established positive relationships between the BPN and SDI in autonomy (ßself = 0.21 vs. ßproxy = 0.18), competence (ßself = 0.47 vs. ßproxy = 0.53), and relatedness (ßself = 0.21 vs. ßproxy = 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.

The global burden, trends, and inequalities of individuals with developmental and intellectual disabilities attributable to iodine deficiency from 1990 to 2019 and its prediction up to 2030.

Objective: The objective of this study was to assess the global burden of disease for developmental and intellectual disabilities caused by iodine deficiency from 1990 to 2019. Methods: Using data from the global burden of disease (GBD) 2019, we conducted a cross-country inequity analysis to examine the worldwide burden of developmental and intellectual disabilities caused by the issue of iodine deficiency from 1990 to 2019. Absolute and relative inequality were assessed by the slope index of inequality and the concentration index, respectively. After summarising the latest evidence, we also projected the age-standardized prevalence and years lived with disability (YLD) rates up to 2030 using the BAPC and INLA packages in R statistical software. Results: In 2019, the global age-standardized prevalence and YLD rates for developmental and intellectual disabilities due to iodine deficiency were 22.54 per 100,000 population (95% UI 14.47 to 29.23) and 4.12 per 100,000 population (95% UI 2.25 to 6.4), respectively. From 1990 to 2019, the age-standardized prevalence and YLD rates of developmental and intellectual disabilities due to iodine deficiency decreased significantly. Geographic distribution showed that areas with lower socio-demographic indices (SDI) were the most affected. The correlation between higher SDI and lower prevalence highlights the role of economic and social factors in the prevalence of the disease. Cross-national inequity analysis shows that disparities persist despite improvements in health inequalities. In addition, projections suggest that the disease burden may decline until 2030. Conclusion: This research underscores the necessity for targeted interventions, such as enhancing iodine supplementation and nutritional education, especially in areas with lower SDI. We aim to provide a foundation for policymakers further to research effective preventative and potential alternative treatment strategies.

Opinions of special education teachers on inappropriate sexual behaviors in adolescents with intellectual disabilities.

Inappropriate sexual behaviors may be observed in individuals with intellectual disabilities (ID), especially during adolescence. There are several undesired consequences of exhibiting such behaviors in public spaces, such as schools. The competencies and attitudes of special education teachers, who are responsible for the education of individuals with ID, are of significant influence. This study was conducted to investigate the views of special education teachers working with adolescents with ID on inappropriate sexual behaviors exhibited in educational settings. Accordingly, semi-structured interviews were conducted with 12 special education teachers. The phenomenological research design, one of the qualitative research methods, and thematic analysis were used in this study. Five themes were identified after the analysis of the findings of the study, namely, common behaviors, teacher attitudes, teacher competencies, teacher interventions, and educational content. The findings were discussed on the basis of the relevant studies in the literature and a number of conclusions were reached. Accordingly, the inappropriate sexual behaviors that special education teachers encounter the most frequently are masturbation, undressing, and touching, and when these behaviors are exhibited aggressively, teachers have difficulty in intervening. Participants regard themselves to be incompetent in terms of sexual education and consider relevant educational content inadequate.

Telepsychiatry for people with intellectual disabilities and mental health difficulties during Covid-19 pandemic: survey of self-reported experience and acceptability to patients, carers and psychiatrists in the UK.

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

Outcomes of genital hygiene and anxiety training for mothers of girls with profound intellectual disabilities: A randomized controlled experiment.

Female children with profound intellectual disabilities (IDs) may experience symptoms of urinary tract infections (UTIs) and depend on others' care. However, their caregivers may lack general hygiene skills and experience heightened anxiety when their care is expected. This study reports outcome of a training that aims to enhance genital hygiene skills and decrease anxiety levels of mothers of girls diagnosed with profound ID. The study was conducted in a city located in Turkey in 2020. It was designed with a randomized controlled experimental approach based on a pre-test and post-test model with experimental and control groups. The sample consisted of 66 mothers of girls who were diagnosed with profound ID, did not have UTI but were at high risk of developing it. A 6-week program with 24 sessions was implemented. After the training, mothers in the experimental group changed the sanitary pad and the underwear during menstruation and gave their daughters a bath more frequently; had a higher knowledge of recognizing and preventing UTI symptoms and cleaning of the perineum area; and had significantly lower levels of anxiety. A carefully designed simulator-based training can enhance the knowledge and skills of mothers to recognize the UTI symptoms, apply their knowledge to prevent the symptoms and implement genital hygiene practices, which in turn have a positive effect on reducing their level of anxiety.

The scientist/practitioner in behavior analysis: A case study.

This article is a transcription of Murray Sidman's presentation at the annual meeting of the Society for the Quantitative Analysis of Behavior in May 1998. It describes the development (from 1965 to 1975) of behavior-change programs implemented outside the animal laboratory to benefit humans before such application was established formally as an entity derived from the experimental analysis of behavior. The presentation illustrates the use of an inductive method in practice, where working with a fluid behavior stream entails making intervention decisions on the spot. Examples include fading and backward-chaining procedures in the establishment and stimulus control of novel actions. Sidman also discusses the certification of practitioners and the interaction between client and therapist and between basic and applied endeavors. The latter define what is contemporaneously described as translational intervention. It is noteworthy that Sidman's presentation was at a meeting attended by both practitioners and scientists.

Experiences of family carers in providing care to children with intellectual disabilities in India: A qualitative evidence synthesis.

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.

The relationship of stereotypes, social distance and sexuality knowledge with attitudes towards sexuality of people with mild intellectual disabilities.

BACKGROUND: The present study examines the relationship between stereotypical beliefs about people with intellectual disabilities, desire for social distance, and general knowledge about human sexuality with attitudes towards the sexuality of adults with mild intellectual disabilities. METHOD: Two hundred fifty participants from staff, family and community samples completed an online set of questionnaires. RESULTS: Higher agreement with stereotypical beliefs and lower sexual knowledge were associated with less normalising and more paternalistic attitudes towards the sexuality of adults with mild intellectual disabilities. Higher agreement with stereotypical beliefs was also associated with more negative attitudes. On the other hand, willingness to interact with these adults was associated with more normalising and less paternalistic attitudes. CONCLUSIONS: Interventions that aim to support adults with intellectual disabilities in relation to their sexuality should also address the perceptions of their support network towards them as individuals with disabilities, as well as their knowledge about sexuality.

Exploring the use of telepractice Dohsa-hou to adults with intellectual disabilities.

This study presents the application of an authentic Japanese bodywork approach Dohsa-hou to adults with intellectual disabilities who live in a care facility. Amid the COVID-19 pandemic, such people remained disconnected from their families and friends, for which reason many of them experience anxiety, stress and inability to enjoy leisure activities. Given the lockdown circumstances, we decided to use for the first time in the field telepractice to provide Dohsa-hou. The results showed that participants experienced a gradual positive mood change and also expressed a desire to continue the sessions. Considering this, although further research is still needed, we assume that telepractice Dohsa-hou might be a viable substitute for the face-to-face sessions.

Feasibility of a laboratory-based protocol for measuring energy expenditure and accelerometer calibration in adults with intellectual disabilities.

Adults with intellectual disabilities experience numerous health inequalities. Targeting unhealthy lifestyle behaviours, such as high levels of sedentary behaviour and overweight/obesity, is a priority area for improving the health and adults with intellectual disabilities and reducing inequalities. Energy expenditure is a fundamental component of numerous health behaviours and an essential component of various free-living behaviour measurements, e.g. accelerometry. However, little is known about energy expenditure in adults with intellectual disabilities and no population-specific accelerometer data interpretation methods have been calibrated. The limited research in this area suggests that adults with intellectual disabilities have a higher energy expenditure, which requires further exploration, and could have significant impacts of device calibration. However, due to the complex methods required for measuring energy expenditure, it is essential to first evaluate feasibility and develop an effective protocol. This study aims to test the feasibility of a laboratory-based protocol to enable the measurement of energy expenditure and accelerometer calibration in adults with intellectual disabilities.We aimed to recruit ten adults (≥ 18 years) with intellectual disabilities. The protocol involved a total of nine sedentary, stationary, and physical activities, e.g. sitting, lying down, standing, and treadmill walking. Each activity was for 5 min, with one 10 min lying down activity to measure resting energy expenditure. Breath by breath respiratory gas exchange and accelerometry (ActiGraph and ActivPAL) were measured during each activity. Feasibility was assessed descriptively using recruitment and outcome measurement completion rates, and participant/stakeholder feedback.Ten adults (N = 7 female) with intellectual disabilities participated in this study. The recruitment rate was 50% and 90% completed the protocol and all outcome measures. Therefore, the recruitment strategy and protocol are feasible.This study addresses a significant gap in our knowledge relating to exercise laboratory-based research for adults with intellectual disabilities The findings from this study provide essential data that can be used to inform the development of future protocols to measure energy expenditure and for accelerometer calibration in adults with intellectual disabilities.

Reading instruction for students with intellectual disabilities who require augmentative and alternative communication: A multiple single case study with baseline, posttest, follow-up, and maintenance.

The purpose of the current study was to examine whether seven children, aged 6-10 years, with intellectual disabilities who require augmentative and alternative communication, could acquire phonological awareness and reading skills by using a reading material that is based on research on the evidence-based reading program Accessible literacy learning. The effect of the measures has been examined using a multiple single-case design with baseline, posttest, follow-up, and maintenance. All the teachers were trained to deliver the reading intervention in the students' familiar place at school. The results indicated that students with intellectual disabilities who require augmentative and alternative communication could acquire phonological awareness and decoding by working systematically with reading material based on evidence-based strategies.

Enhancing special education programs' curricula for students with intellectual disabilities in saudi arabia: A call for personalized approaches and inclusive practices.

BACKGROUND/AIMS: In Saudi Arabia, students with intellectual disabilities (ID) receive some of their education through textbooks. However, using textbooks with students with ID contradicts the principles of providing services based on individuals with ID needs personalized plans to develop their individual abilities. This study aimed to investigate family and teacher perceptions of middle and high school curricula for students with ID in Saudi Arabia. This study focused specifically on the extent to which these curricula contribute to the development of academic and life skills among these students. METHOD AND PROCEDURE: A 21-item scale was used to measure the perceptions of family members and teachers of individuals with intellectual disability. The scale validity and reliability were examined and supported. The sample comprised of 113 family members and 111 teachers of students with ID. OUTCOMES AND RESULTS: Family members and teachers both expressed low satisfaction regarding the improvement in academic and life skills of students as a result of the current curricular in the surveyed programs. Additionally, they conveyed dissatisfaction with the overall outcomes of services provided for individuals with intellectual disabilities. CONCLUSIONS AND IMPLICATIONS: This study highlights the inadequacies of a one-size-fits-all approach to designing curricula for students with ID. There is a need to improve and enhance curriculum content to meet the diverse learning needs of these individuals.

Optimising the oral midazolam dose for premedication in people with intellectual disabilities and/or autism spectrum disorder.

BACKGROUND: In people with intellectual disabilities and/or autism spectrum disorder, oral midazolam (OM) is very effective as premedication for facilitating medical treatment. In this retrospective study, we investigated the optimal dosage of OM for premedication. METHODS: Patients with intellectual disability and/or autism spectrum disorder who were given OM as a premedication were selected from anaesthesia records. The primary outcome variable was the dose of OM (mg/kg) required to produce an adequate sedation. RESULTS: The mean OM dose required was 0.32 ± 0.10 mg/kg. The required OM dose decreased significantly as age and weight increased, and age and weight were also shown to be significantly associated with the dose of OM in the multivariate linear regression analysis. CONCLUSION: The dosage of OM to achieve adequate sedation should decrease as the patient ages. Furthermore, adequate sedation can be achieved with even lower doses of OM in obese people.

The resilience of parents of children with intellectual disabilities: An effort from self-regulation and career burnout.

BACKGROUND: Researchers have made great efforts to help parents of children with intellectual disabilities overcome the stress and burden. Learning to be resilient is one effective strategy. AIM: This study explores resilience among parents of children with intellectual disabilities and how career burnout and self-regulation relate to parents' resilience in mainland China. METHODS: The Burnout Scale, the Self-Regulation Scale and the Resilience Scale were administered to 324 parents of children with intellectual disabilities. RESULTS: Results showed that career burnout significantly negatively influenced resilience (ß = -0.269, p = 0.000), while self-regulation significantly positively influenced resilience (ß = 0.754, p = 0.000). In addition, self-regulation moderated the relationships between career burnout and resilience (ß = 0.176, p = 0.003). CONCLUSION: The findings offer valuable insights for enhancing the resilience of parents of children with intellectual disabilities.

Participation in Special Olympics reduces the rate for developing diabetes in adults with intellectual and developmental disabilities.

AIM: Adults with intellectual and developmental disabilities (IDD) have a significantly higher prevalence of Type 2 diabetes than the general population. Evidence that lifestyle and/or behavioural interventions, such as participation in Special Olympics, decreases the risk of developing diabetes in adults with IDD could help minimize health disparities and promote overall health in this population. METHODS: This was a 20-year retrospective cohort study of adults with IDD (30-39 years) in the province of Ontario, Canada, that compared hazard rates of diabetes among Special Olympics participants (n = 4145) to non-participants (n = 31,009) using administrative health databases housed at ICES. Using cox proportional hazard models, crude and adjusted hazard ratios were calculated for the association between the primary independent variable (Special Olympics participation status) and the dependent variable (incident diabetes cases). RESULTS: After controlling for other variables, the hazard ratio comparing rates for developing diabetes between Special Olympics participants and non-participants was 0.85. This represents a 15% reduction in the hazard among Special Olympics participants when followed for up to 20 years. This result was statistically significant and represents a small effect size. CONCLUSIONS: Special Olympics could be considered a complex intervention that promotes physical activity engagement through sport participation, health screenings, and the promotion of healthy eating habits through educational initiatives. This study provides evidence that Special Olympics participation decreases the rate for developing diabetes.

The influence of cognitive load and vision variability on postural balance in adolescents with intellectual disabilities.

Introduction: This study aimed to investigate the impact of cognitive load, particularly its escalation during the execution of the same test, under varying vision conditions, on postural balance among adolescents with intellectual disability (ID). Methods: Twenty adolescents underwent balance assessments under different visual conditions (Open Eyes (OE), Closed Eyes (CE), Flash, Goggles, Visual Stimulation (VS)) and task settings (Single Task (ST), Dual Task (DT) without challenges, and DT with challenges). The cognitive test was assessed using Verbal Fluency (VF). Results and discussion: Significant effects were found for Task (p < 0.001, ηp2 = 0.85), indicating that CoP values significantly increased (p < 0.05) with the introduction of the DT. Dual Task Cost (DTC) demonstrated significant effects for Vision (p = 0.008, ηp2 = 0.62), with values varying significantly (p < 0.05) among different vision conditions, especially in CE and Flash conditions. Visual Dependency Quotient (VDQ) analyses revealed significant effects of condition (p < 0.001, ηp2 = 0.84), with significant changes observed in CE/OE and Flash/OE conditions (p < 0.05). Significant effects were observed for Cognitive performance in the Challenge condition (p < 0.001, ηp2 = 0.86), with decreased performance with cognitive task challenges, particularly in Flash and Goggles conditions (p < 0.05). In conclusion, cognitive tasks, especially challenging ones, and visual variations significantly impact postural balance in adolescents with ID.

Optimal Body Weights for Adults with Severe Motor and Intellectual Disabilities.

Determining the optimal body weight for individuals with severe motor and intellectual disabilities (SMID) lacks a standardized approach. In this study, we aimed to develop a formula to estimate the ideal body weight for each SMID patient, considering factors such as reduced muscle and bone mass. We analyzed data from 111 SMID patients (56 male, 55 female; age range 20 to 73 y) who underwent blood tests measuring creatinine (Cr) and cystatin C (cysC) for clinical reasons between Feb. 2018 and Feb. 2023. To create the optimal body weight formula, we utilized three variables: height, estimated glomerular filtration (eGFR)-Cr, and eGFR-cysC. The validity of the formula was assessed by comparing the measured triceps subcutaneous fat thickness (TSF) to the reference TSF (%TSF), evaluating how accurately it reflects the appropriate physique. The derived optimal body weight formula is as follows: Optimal body weight=(height)2×(18.5-25.0)×{1-0.41×(1-eGFR-cysC/eGFR-Cr)}×0.93. Our formula demonstrated validity when using %TSF as an indicator. Establishing a method to determine optimal body weight in SMID patients, considering their low muscle and bone mass, is crucial for accurate nutritional assessment and subsequent nutritional management.

User Requirements and Perceptions of a Sensor System for Early Stress Detection in People With Dementia and People With Intellectual Disability: Qualitative Study.

BACKGROUND: Timely detection of stress in people with dementia and people with an intellectual disability (ID) may reduce the occurrence of challenging behavior. However, detecting stress is often challenging as many long-term care (LTC) residents with dementia and residents with ID have communication impairments, limiting their ability to express themselves. Wearables can help detect stress but are not always accepted by users and are uncomfortable to wear for longer periods. Integrating sensors into clothing may be a more acceptable approach for users in LTC. To develop a sensor system for early stress detection that is accepted by LTC residents with dementia and residents with ID, understanding their perceptions and requirements is essential. OBJECTIVE: This study aimed to (1) identify user requirements for a garment-integrated sensor system (wearable) for early stress detection in people with dementia and people with ID, (2) explore the perceptions of the users toward the sensor system, and (3) investigate the implementation requirements in LTC settings. METHODS: A qualitative design with 18 focus groups and 29 interviews was used. Focus groups and interviews were conducted per setting (dementia, ID) and target group (people with dementia, people with ID, family caregivers, health care professionals). The focus groups were conducted at 3 time points within a 6-month period, where each new focus group built on the findings of previous rounds. The data from each round were used to (further) develop the sensor system. A thematic analysis with an inductive approach was used to analyze the data. RESULTS: The study included 44 participants who expressed a positive attitude toward the idea of a garment-integrated sensor system but also identified some potential concerns. In addition to early stress detection, participants recognized other potential purposes or benefits of the sensor system, such as identifying triggers for challenging behavior, evaluating intervention effects, and diagnostic purposes. Participants emphasized the importance of meeting specific system requirements, such as washability and safety, and user requirements, such as customizability and usability, to increase user acceptance. Moreover, some participants were concerned the sensor system could contribute to the replacement of human contact by technology. Important factors for implementation included the cost of the sensor system, added value to resident and health care professionals, and education for all users. CONCLUSIONS: The idea of a garment-integrated sensor system for early stress detection in LTC for people with dementia and people with ID is perceived as positive and promising by stakeholders. To increase acceptability and implementation success, it is important to develop an easy-to-use, customizable wearable that has a clear and demonstrable added value for health care professionals and LTC residents. The next step involves pilot-testing the developed wearable with LTC residents with dementia and residents with ID in clinical practice.

Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study.

Background: People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis. Objectives: (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources. Design and methods: Work package 1 rapid scoping reviews - three reviews focused on the health and social care needs of older people with learning disabilities and 'behaviours that challenge others', and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice - analysis of published service standards to assess excellence criteria, by mapping services, interviews (n = 30), survey (n = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living (n = 4); residential/nursing home (n = 2); day activities (n = 1), Shared Lives (n = 2). Fieldwork (20 days per model), interviews (n = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 - co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 - three stakeholder workshops co-produced service recommendations. Findings: The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and 'behaviours that challenge others'. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. 'Planning Ahead' cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers' forum, a film, a podcast and academic papers. Conclusions: There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. 'Behaviours that challenge others' was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design. Limitations: The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families' plans, and therefore change, may be frustrated by insufficient service resources. Future work: Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die 'in place'; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the 'Planning Ahead' cards. Trial registration: This trial is registered as ISRCTN74264887. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.

People with learning disabilities are living longer, but most live with their families, who are also getting older. This is because there are not enough suitable places for people with learning disabilities to live, and family carers worry that the person will not get the right support and have a good life. Our research aimed to improve support for people with learning disabilities and their family carers to plan ahead for a good life. We focused on people who are labelled with 'behaviours that challenge others'. We read what has been written about this area. We looked for and found examples of excellent support for older people with learning disabilities. Researchers and people with learning disabilities and family carers spent time hanging out with people where they live or spend their days to see what support they get. Then we had three meetings with everyone involved and discussed our research findings with people with learning disabilities, family carers, and professionals. We found that people can be supported to live good lives as they grow older. This can be living alone or with people they choose, and it means having staff they like and who like them and being supported to be active. However, we found that ageing of people with learning disabilities is often ignored, and some people were not living good lives. We also found that the label of 'behaviours that challenge others' is unhelpful. We worked with people with learning disabilities and family carers to make a set of cards with pictures and questions to help people plan ahead for a good life. We produced resources and made recommendations to create a new plan for older people with learning disabilities to support people to lead good lives. This is very important because there is a lack of attention to and support for people with learning disabilities as they age.

Efficacy and tolerability of levetiracetam in people with and without intellectual disabilities: A naturalistic case control study.

INTRODUCTION: People with Intellectual Disabilities (PwID) are twenty times more likely than general population to have epilepsy. Guidance for prescribing antiseizure medication (ASM) to PwID is driven by trials excluding them. Levetiracetam (LEV) is a first-line ASM in the UK. Concerns exist regarding LEV's behavioural and psychological adverse effects, particularly in PwID. There is no high-quality evidence comparing effectiveness and adverse effects in PwID to those without, prescribed LEV. METHODS: Pooled casenote data for patients prescribed LEV (2000-2020) at 18 UK NHS Trusts were analysed. Demographics, starting and maximum dose, adverse effects, dropouts and seizure frequency between ID (mild vs. moderate-profound (M/P)) and general population for a 12-month period were compared. Descriptive analysis, Mann-Whitney, Fisher's exact and logistic regression methods were employed. RESULTS: 173 PwID (mild 53 M/P 120) were compared to 200 without ID. Mean start and maximum dose were similar across all groups. PwID (Mild & M/P) were less likely to withdraw from treatment (P = 0.036). No difference was found between ID and non-ID or between ID groups (Mild vs M/P) in LEV's efficacy i.e. >50 % seizure reduction. Significant association emerged between ID severity and psychiatric adverse effects (P = 0.035). More irritability (14.2 %) and aggression (10.8 %) were reported in M/P PwID. CONCLUSION: PwID and epilepsy have high rates of premature mortality, comorbidities, treatment resistance and polypharmacy but remain poorly researched for ASM use. This is the largest studied cohort of PwID trialled on LEV compared to general population controls. Findings support prescribing of LEV for PwID as a first-line ASM.