18 research outputs found
Supporting students with Tourette syndrome in secondary school: a survey of staff views
Tourette syndrome is a neurological condition involving involuntary movements and sounds (tics) and is thought to affect as many as 1% of school aged children. Some young people with Tourette syndrome experience educational difficulties and social difficulties. Current clinical guidelines suggest educators can play an important role in maximising learning potential and reducing the negative impact of this condition on students’ social adjustment. Secondary school staff (N = 63) with responsibilities for special educational needs or disabilities completed a survey about support strategies for students with Tourette syndrome. Participants were first asked to suggest potentially helpful strategies and then rated how easily 17 recommended strategies could be implemented in school. The survey participants suggested a range of support strategies that were categorised as (1) promoting knowledge and understanding in school, (2) helping the student to cope with his/her tics, (3) supporting the student’s learning and (4) providing social and emotional support. All the recommended support strategies were rated as being easy to implement (or already in place) by the majority of respondents (e.g., increasing staff awareness and regular communication with home). The strategies that were identified as being least easy to implement were those requiring extra staff input (support from teaching assistants and individual/small group working). Additional challenges to providing support were also identified by the participants (e.g., getting input from outside agencies)
Wordless Intervention for Epilepsy in Learning Disabilities (WIELD): Study Protocol for a Randomized Controlled Feasibility Trial
Epilepsy is the most common neurological problem that affects people with learning disabilities. The high seizure frequency, resistance to treatments, associated skills deficit and co-morbidities make the management of epilepsy particularly challenging for people with learning disabilities. The Books Beyond Words booklet for epilepsy uses images to help people with learning disabilities manage their condition and improve quality of life. Our aim is to conduct a randomized controlled feasibility trial exploring key methodological, design and acceptability issues, in order to subsequently undertake a large-scale randomized controlled trial of the Books Beyond Words booklet for epilepsy
Psychological therapies with people who have intellectual disabilities
Historically, many people with intellectual disabilities were considered unable to take part in psychological therapies. This view has changed considerably, and there has been an increasing focus on the development of psychological therapies for people with intellectual disabilities, including methods to help improve the accessibility of treatment. Within this chapter, cognitive-behavioural therapy, mindfulness, dialectical behaviour therapy, behavioural therapy, and psychodynamic therapy are reviewed. There is emerging evidence to indicate that a range of psychological therapies are effective with people who have intellectual disabilities, but a lack of large scale and well-designed clinical trials investigating a range of psychological interventions remains problematic
Attentional bias towards positive and negative images amongst offenders and non-offenders with intellectual disabilities
Aims: The aim of the study was to examine attentional bias towards positive and negative images amongst men with intellectual disabilities, some of whom had a history of criminal offending. A secondary aim was to explore the relationship between attentional bias, empathy and distorted cognitions.
Method: Forty-six men with intellectual disabilities with a history of criminal offending and 51 men with intellectual disabilities without any known history of criminal offending were recruited and invited to complete a dot-probe paradigm using images, as well as measures of distorted cognitions and empathy. Comparisons were made between the two groups.
Results: Non-offenders had a significant attentional bias away from negative images, while offenders had a small attentional bias towards negative images. There was a significant positive relationship between distorted cognitions and an attentional bias towards negative images. There was a significant negative relationship between empathy and an attentional bias towards negative images
Using a picture-based book to support epilepsy care in clinical consultations for people with intellectual disabilities
Background and aims People with intellectual disabilities are more likely to have epilepsy than the general population. A picture-based book, Getting on with Epilepsy, may help to improve their epilepsy management and quality of life. The present study aimed to explore how the book could be best used in routine clinical care. Methods Twenty people with epilepsy and intellectual disabilities were video-recorded using the Getting on with Epilepsy book with a nurse or doctor. This was analysed using conversation analytic methods. Eighteen patients and five clinicians took part in interviews to explore their views on book use, which were thematically analysed. All data were then synthesised to form themes. Results Three themes were identified which demonstrated the importance of (1) understanding the book depicted seizures (2) relating the book to the participants’ experiences (3) using the book as an education and information tool. The themes highlighted the techniques and approaches that clinicians used to facilitate understanding. Some tensions and differences were noted between training and implementation in routine practice, particularly around prompts in themes 1 and 3 intended to correct or change participants’ interpretation of the book. Conclusions The Getting on with Epilepsy book can be used in routine clinical practice to support people with intellectual disabilities and epilepsy. There was a balance between exploring patients’ narratives and understanding with the need to convey clinical information, and this may also apply to the use of other accessible resources
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.NIHR Research for Patient Benefit Programme (PB-PG-0213-30042).This is the final version of the article. It first appeared from BMJ Publishing Group via https://doi.org/ 10.1136/bmjopen-2016-01299
The Impact of NOD2 Genetic Variants on the Gut Mycobiota in Crohn's Disease Patients in Remission and in Individuals Without Gastrointestinal Inflammation
Background and aims: Historical and emerging data implicate fungi in Crohn's disease [CD] pathogenesis. However, a causal link between mycobiota, dysregulated immunity, and any impact of NOD2 variants remains elusive. This study aims to evaluate associations between NOD2 variants and faecal mycobiota in CD patients and non-CD subjects.
Methods: Faecal samples were obtained from 34 CD patients [18 NOD2 mutant, 16 NOD2 wild-type] identified from the UK IBD Genetics Consortium. To avoid confounding influence of mucosal inflammation, CD patients were in clinical remission and had a faecal calprotectin <250 μg/g; 47 non-CD subjects were included as comparator groups, including 22 matched household [four NOD2 mutant] and 25 non-household subjects with known NOD2 genotype [14 NOD2 mutant] identified by the NIHR BioResource Cambridge. Faecal mycobiota composition was determined using internal transcribed spacer 1 [ITS1] sequencing and was compared with 16S rRNA gene sequences and volatile organic compounds.
Results: CD was associated with higher numbers of fungal observed taxonomic units [OTUs] [p = 0.033]. Principal coordinates analysis using Jaccard index [p = 0.018] and weighted Bray-Curtis dissimilarities [p = 0.01] showed Candida spp. clustered closer to CD patients whereas Cryptococcus spp. clustered closer to non-CD. In CD, we found higher relative abundance of Ascomycota [p = 0.001] and lower relative abundance Basidiomycota [p = 0.019] phyla. An inverse relationship was found between bacterial and fungal Shannon diversity in NOD2 wild-type which was independent of CD [r = -0.349; p = 0.029].
Conclusions: This study confirms compositional changes in the gut mycobiota in CD and provides evidence that fungi may play a role in CD pathogenesis. No NOD2 genotype-specific differences were observed in the faecal mycobiota.published version, accepted version (12 month embargo), submitted versionThis work was supported by CORE, the Digestive Diseases Foundation [now Guts UK], and the Wellcome Trust [grant number 097943 to NAK and 093885 to CAL] for stool collection, bacterial sequencing, and VOC profiling. Further financial support for fungal sequencing was provided from Northumbria University and NU-OMICS.This article is freely available via Open Access. Click on the Publisher URL to access it via the publisher's site
Distorted Views of Biodiversity: Spatial and Temporal Bias in Species Occurrence Data
Boakes et al. compile and analyze a historical dataset of 170,000 bird sightings over two centuries and show how changing trends in data gathering may confound a true picture of biodiversity change
Wordless intervention for epilepsy in learning disabilities (WIELD):study protocol for a randomized controlled feasibility trial
Epilepsy is the most common neurological problem that affects people with learning disabilities. The high seizure frequency, resistance to treatments, associated skills deficit and co-morbidities make the management of epilepsy particularly challenging for people with learning disabilities. The Books Beyond Words booklet for epilepsy uses images to help people with learning disabilities manage their condition and improve quality of life. Our aim is to conduct a randomized controlled feasibility trial exploring key methodological, design and acceptability issues, in order to subsequently undertake a large-scale randomized controlled trial of the Books Beyond Words booklet for epilepsy