Definition, assessment and management of frailty for people with intellectual disabilities: A scoping review.

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.

A Scoping Review of the Complementary Feeding Practices and Early Eating Experiences of Children With Down Syndrome.

OBJECTIVE: Children with Down syndrome may experience more challenges in their early feeding and may be introduced to complementary foods comparatively later than typically developing (TD) children. This scoping review aimed to identify and synthesize the existing literature that describes feeding problems and early eating experiences relating to the period of complementary feeding for children with Down syndrome. METHODS: Scopus, PubMed, Medline, Web of Science, and PsycInfo were searched. Journal articles published between January 1991 and June 2022 that reported on the complementary feeding period with children with Down syndrome were included. RESULTS: Eighteen journal articles met the inclusion criteria. Children with Down syndrome were introduced to complementary foods later than TD children and progressed to more challenging food textures at a slower rate. Gross and fine motor skill delays and sensory difficulties contributed to secondary feeding problems such as difficulties chewing, biting, and reduced awareness of food on lips and tongue. Parents of children with Down syndrome reported exercising more caution and employing more controlling feeding practices compared to TD and had higher levels of concern regarding their child's weight. CONCLUSIONS: Guidelines and early feeding support specific to children with Down syndrome should be available before the first complementary foods are introduced and throughout this period. Feeding support should aim to address parental concerns and provide assistance when feeding problems occur, to minimize delays and encourage the optimum development of eating abilities. Future research should address the development of feeding problems during this period and explore possible interventions.

Relationships between feeding problems, eating behaviours and parental feeding practices in children with Down syndrome: A cross-sectional study.

BACKGROUND: Research investigating feeding problems in children with Down syndrome is scarce. This study investigated feeding problems, eating behaviours and parental feeding practices in children with Down syndrome (n = 40), and typically developing (TD) children of the same age and sex (n = 40). METHOD: Parents of children aged 6-months to 5-years in the UK completed questionnaires assessing their child's feeding problems and eating behaviours and parental feeding practices. RESULTS: For children with Down syndrome, feeding problems were: significantly greater than for TD children; negatively associated with breast milk duration and appetite during exclusive milk feeding; and positively associated with drinking more slowly. For both groups, feeding problems were significantly correlated with more food avoidant eating behaviours. CONCLUSIONS: This study provides new information about the relationships between feeding problems and eating behaviours in early development. Longitudinal research is needed to further investigate these relationships, so that effective support can be developed for families.

Do people with intellectual disabilities understand their prescription medication? A scoping review.

BACKGROUND: People with intellectual disabilities are more likely to experience poor health than the general population and are frequently prescribed multiple medications. Therefore, it is important that people with intellectual disabilities understand their medication and potential adverse effects. METHOD: A scoping review explored people with intellectual disabilities' knowledge of prescription medications, their risks and how medication understanding can be improved. RESULTS: Ten journal articles were included. People with intellectual disabilities often lacked understanding of their medication, including its name, purpose and when and how to take it. Participants were often confused or unaware of adverse effects associated with their medication. Information was sometimes explained to carers rather than people with intellectual disabilities. Some interventions and accessible information helped to improve knowledge in people with intellectual disabilities. CONCLUSION: There is a need for accessible and tailored information about medication to be discussed with people with intellectual disabilities in order to meet legal and best practice standards.

"Sometimes, it just stops me from doing anything": A qualitative exploration of epilepsy management in people with intellectual disabilities and their carers.

PURPOSE: Epilepsy affects 1 in 5 people with an intellectual disability (ID), but little is known about their experiences of living with epilepsy. A qualitative study was conducted to investigate the impact and management of epilepsy in people with ID. MATERIALS AND METHODS: People with epilepsy and ID and their carers were invited to take part in semi-structured interviews. Eleven participants with ID and their carers were interviewed together, one participant with ID and their carer were interviewed separately, two interviews took place with the participant with ID only, and one interview took place with the carer only. The interviews were transcribed verbatim, coded, and analyzed thematically (dual independent coding for 30% of the transcripts). RESULTS: Three themes emerged (participant characteristics, living with epilepsy, epilepsy management and information needs) which indicated the following: 1) diversity regarding health profiles, communication abilities, severity of epilepsy, perceived control of epilepsy, and support needs; 2) a reduction in severity and frequency of seizures for a sizeable proportion of participants through antiepileptic drugs; 3) the lifelong impact of epilepsy and related seizures on participants' activities and quality of life; 4) the perceived burden of epilepsy and difficulty managing the condition for a large proportion of participants; 5) high levels of satisfaction with epilepsy-related services and care; and 6) an overall lack of written accessible information about epilepsy. CONCLUSIONS: This study has highlighted a significant impact of epilepsy and related seizures on the daily lives and quality of life of people with ID. Although a sizeable proportion of participants and their carers considered their epilepsy to be well controlled, the majority reported difficulties managing epilepsy and minimizing its impact on their wellbeing. Excluding care staff and the support provided by epilepsy clinics, the participants had not accessed any adapted self-management or information resources about epilepsy.

The benefit of orthographic support for oral vocabulary learning in children with Down syndrome.

Children with Down syndrome typically have weaknesses in oral language, but it has been suggested that this domain may benefit from learning to read. Amongst oral language skills, vocabulary is a relative strength, although there is some evidence of difficulties in learning the phonological form of spoken words. This study investigated the effect of orthographic support on spoken word learning with seventeen children with Down syndrome aged seven to sixteen years and twenty-seven typically developing children aged five to seven years matched for reading ability. Ten spoken nonwords were paired with novel pictures; for half the nonwords the written form was also present. The spoken word learning of both groups did not differ and benefited to the same extent from the presence of the written word. This suggests that compared to reading-matched typically developing children, children with Down syndrome are not specifically impaired in phonological learning and benefit equally from orthographic support.

The use of social robots with children and young people on the autism spectrum: A systematic review and meta-analysis.

BACKGROUND: Robot-mediated interventions show promise in supporting the development of children on the autism spectrum. OBJECTIVES: In this systematic review and meta-analysis, we summarize key features of available evidence on robot-interventions for children and young people on the autism spectrum aged up to 18 years old, as well as consider their efficacy for specific domains of learning. DATA SOURCES: PubMed, Scopus, EBSCOhost, Google Scholar, Cochrane Library, ACM Digital Library, and IEEE Xplore. Grey literature was also searched using PsycExtra, OpenGrey, British Library EThOS, and the British Library Catalogue. Databases were searched from inception until April (6th) 2021. SYNTHESIS METHODS: Searches undertaken across seven databases yielded 2145 articles. Forty studies met our review inclusion criteria of which 17 were randomized control trials. The methodological quality of studies was conducted with the Quality Assessment Tool for Quantitative Studies. A narrative synthesis summarised the findings. A meta-analysis was conducted with 12 RCTs. RESULTS: Most interventions used humanoid (67%) robotic platforms, were predominantly based in clinics (37%) followed home, schools and laboratory (17% respectively) environments and targeted at improving social and communication skills (77%). Focusing on the most common outcomes, a random effects meta-analysis of RCTs showed that robot-mediated interventions significantly improved social functioning (g = 0.35 [95%CI 0.09 to 0.61; k = 7). By contrast, robots did not improve emotional (g = 0.63 [95%CI -1.43 to 2.69]; k = 2) or motor outcomes (g = -0.10 [95%CI -1.08 to 0.89]; k = 3), but the numbers of trials were very small. Meta-regression revealed that age accounted for almost one-third of the variance in effect sizes, with greater benefits being found in younger children. CONCLUSIONS: Overall, our findings support the use of robot-mediated interventions for autistic children and youth, and we propose several recommendations for future research to aid learning and enhance implementation in everyday settings. PROSPERO REGISTRATION: Our methods were preregistered in the PROSPERO database (CRD42019148981).

Feasibility study of a randomised controlled trial to investigate the effectiveness of using a humanoid robot to improve the social skills of children with autism spectrum disorder (Kaspar RCT): a study protocol.

INTRODUCTION: Interventions using robot-assisted therapy may be beneficial for the social skills development of children with autism spectrum disorder (ASD); however, randomised controlled trials (RCTs) are lacking. The present research aims to assess the feasibility of conducting an RCT evaluating the effectiveness of a social skills intervention using Kinesics and Synchronisation in Personal Assistant Robotics (Kaspar) with children with ASD. METHODS AND ANALYSIS: Forty children will be recruited. Inclusion criteria are the following: aged 5-10 years, confirmed ASD diagnosis, IQ over 70, English-language comprehension, a carer who can complete questionnaires in English and no current participation in a private social communication intervention. Children will be randomised to receive an intervention with a therapist and Kaspar, or with the therapist only. They will receive two familiarisation sessions and six treatment sessions for 8 weeks. They will be assessed at baseline, and at 10 and 22 weeks after baseline. The primary outcome of this study is to evaluate whether the predetermined feasibility criteria for a full-scale trial are met. The potential primary outcome measures for a full-scale trial are the Social Communication Questionnaire and the Social Skills Improvement System. We will conduct a preliminary economic analysis. After the study has ended, a sample of 20 participants and their families will be invited to participate in semistructured interviews to explore the feasibility and acceptability of the study's methods and intervention. ETHICS AND DISSEMINATION: Parents/carers will provide informed consent, and children will give assent, where appropriate. Care will be taken to avoid pressure or coercion to participate. Aftercare is available from the recruiting NHS Trust, and a phased withdrawal protocol will be followed if children become excessively attached to the robot. The results of the study will be disseminated to academic audiences and non-academic stakeholders, for example, families of children with ASD, support groups, clinicians and charities. TRIAL REGISTRATION NUMBER: ISRCTN registry (ISRCTN14156001); Pre-results.

Self-management interventions for epilepsy in people with intellectual disabilities: A scoping review.

PURPOSE: People with intellectual disabilities (ID) experience higher incidences of chronic health conditions, poorer health outcomes, and increased risk of premature death. Epilepsy is 20 times more common in people with ID than in the general population. It tends to be more difficult to diagnose, more severe, and more difficult to treat. Improving epilepsy self-management in this group is advocated in guidelines for best practice. However, few self-management interventions exist, and a robust examination of their effectiveness is missing. Our aim was to identify existing self-management interventions for epilepsy in people with ID and to analyze their impact. METHODS: A scoping review using Arksey and O'Malley's framework was conducted. Medline, EMBASE, CINAHL, PsycInfo, OpenSIGLE, the Cochrane Database of Systematic Reviews, and Web of Science were searched from inception until June 2015. Using a piloted charting tool, selected articles were thematically analyzed. RESULTS: An initial search identified 570 articles, of which five met the inclusion criteria. Pilot and randomized controlled feasibility study findings suggest that self-management interventions targeted at people with ID are acceptable to this population, improve epilepsy-related knowledge, improve seizure frequency, and show potential to improve quality of life. A randomised controlled trial of a self-management intervention is currently underway. CONCLUSION: Studies evaluating self-management interventions for people with epilepsy and ID are sparse. Our findings demonstrate the potential for self-management interventions to improve outcomes in this population. Controlled studies with comparable measures and longer follow-ups are needed to rigorously assess the impact of self-management interventions on this patient population.

Wordless intervention for people with epilepsy and learning disabilities (WIELD): a randomised controlled feasibility trial.

OBJECTIVE: To investigate the feasibility of a full-scale randomised controlled trial of a picture booklet to improve quality of life for people with epilepsy and learning disabilities. TRIAL DESIGN: A randomised controlled feasibility trial. Randomisation was not blinded and was conducted using a centralised secure database and a blocked 1:1 allocation ratio. SETTING: Epilepsy clinics in 1 English National Health Service (NHS) Trust. PARTICIPANTS: Patients with learning disabilities and epilepsy who had: a seizure within the past 12 months, meaningful communication and a carer with sufficient proficiency in English. INTERVENTION: Participants in the intervention group used a picture booklet with a trained researcher, and a carer present. These participants kept the booklet, and were asked to use it at least twice more over 20 weeks. The control group received treatment as usual, and were provided with a booklet at the end of the study. OUTCOME MEASURES: 7 feasibility criteria were used relating to recruitment, data collection, attrition, potential effect on epilepsy-related quality of life (Epilepsy and Learning Disabilities Quality of Life Scale, ELDQOL) at 4-week, 12-week and 20-week follow-ups, feasibility of methodology, acceptability of the intervention and potential to calculate cost-effectiveness. OUTCOME: The recruitment rate of eligible patients was 34% and the target of 40 participants was reached. There was minimal missing data and attrition. An intention-to-treat analysis was performed; data from the outcome measures suggest a benefit from the intervention on the ELDQOL behaviour and mood subscales at 4 and 20 weeks follow-up. The booklet and study methods were positively received, and no adverse events were reported. There was a positive indication of the potential for a cost-effectiveness analysis. CONCLUSIONS: All feasibility criteria were fully or partially met, therefore confirming feasibility of a definitive trial. TRIAL REGISTRATION NUMBER: ISRCTN80067039.

Learning to read new words in individuals with Down syndrome: testing the role of phonological knowledge.

This study examined the effect of word level phonological knowledge on learning to read new words in Down syndrome compared to typical development. Children were taught to read 12 nonwords, 6 of which were pre-trained on their phonology. The 16 individuals with Down syndrome aged 8-17 years were compared first to a group of 30 typically developing children aged 5-7 years matched for word reading and then to a subgroup of these children matched for decoding. There was a marginally significant effect for individuals with Down syndrome to benefit more from phonological pre-training than typically developing children matched for word reading but when compared to the decoding-matched subgroup, the two groups benefitted equally. We explain these findings in terms of partial decoding attempts being resolved by word level phonological knowledge and conclude that being familiar with the spoken form of a new word may help children when they attempt to read it. This may be particularly important for children with Down syndrome and other groups of children with weak decoding skills.