47 research outputs found

    A systematic review and narrative synthesis of inclusive health and social care research with people with intellectual disabilities: How are co‐researchers involved and what are their experiences?

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    Background: Using inclusive research methods with people with intellectual disabilities is increasingly common. A recent consensus statement identified key elements when conducting and reporting inclusive research with people with intellectual disabilities. This review identifies the range of health and social care research topics using inclusive research methodologies, systematically appraises the involvement of researchers with intellectual disabilities, and identifies facilitators and barriers to inclusive research. Researchers' experiences of engaging with inclusive research are synthesised. Method: Seventeen empirical studies focused upon inclusive health and social care research were identified. The associated inclusive research methodologies employed, and the stages in which researchers with intellectual disabilities were involved, along with the experiences of researchers with and without intellectual disabilities were synthesised. Results: Papers focused on a broad range of health and social care topics and largely employed qualitative or mixed‐methods designs. Researchers with intellectual disabilities were frequently involved with data collection, analysis and dissemination. Facilitators of inclusive research comprised sharing power, team working, having sufficient resources and making research methodologies accessible. Conclusions: Researchers with intellectual disabilities are involved in a wide range of methodologies and research tasks. How the added value of inclusive research is measured and its impact on outcomes, require consideration

    A systematic review and narrative synthesis of inclusive research involving people with intellectual disabilities : implications for health research [search strategy]

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    Aims This review aims to identify the range of inclusive research conducted with people with intellectual disabilities and identify the models and theories on which these are based. The experiences of people with intellectual disabilities engaging with this research will also be synthesised. The review will also identify any barriers and facilitators to the engagement of people with intellectual disabilities in inclusive research methodologies. The quality of this literature will be appraised. Review Question How are people with intellectual disabilities involved in inclusive research and what theories underpin this research? What are the experiences of stakeholders (including people with intellectual disabilities) of these inclusive research methodologies? Bibliographic databases The following electronic databases were searched: AMED (HDAS), BNI (HDAS), CINAHL (HDAS), Education Research Complete (EBSCO), EMBASE (HDAS), MedLine (HDAS), PsychINFO (HDAS) and Web of Science on 11 October 2021. No search filters were used. Grey Literature and Registries The following sources of the grey literature were initially searched on 18 November. Google scholar (https://scholar.google.com/) was searched using the terms (intellectual disability OR learning disability) AND inclusive research. The first 100 results were screened for inclusion, and no new articles were identified as relevant. The British Library EThOS database of dissertations was searched using the search terms (‘learning disability’ OR ‘intellectual disability’) AND ‘inclusive research’. This returned 8 results, none of which met inclusion criteria. Restrictions on language None Search dates 2000 - present Searches will be re-run prior to the final analysis Yes Types of study All including grey literature Condition or domain being studied Inclusive research with adults with intellectual disabilitie

    The Use of a Visual Motor Test to Identify Lingering Deficits in Concussed Collegiate Athletes

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    Background: Emerging evidence suggests neurophysiological deficits, such as visual motor coordination (VMC), may persist beyond clinical concussion recovery. Instrumented measurement of upper-limb VMC is critical for neurological evaluation post-concussion and may identify persistent deficits further elucidating persistent neurophysiological impairments not detected by the current clinical assessment battery. Aim: The aim of the study was to determine if a VMC test identifies persistent deficits in concussed collegiate student-athletes who have returned to baseline on clinical concussion assessments. Methods: Thirteen recently concussed intercollegiate student-athletes (male: 7, 18.9±0.7 years, 175.5±12.4 cm, 75.5±23.2 kg), and 13 matched control student-athletes (male: 7, 19.3±1.1 years, 173.5±11.9 cm, 75.8±19.9 kg) completed two testing sessions (T1: \u3c48 h after clinical recovery; T2: 30 days post-concussion) on a visual motor exam. The outcome measures were A* Average score (average number of lights hit on A* exam), simple visual reaction time (SVRT)-RT, and movement time (SVRT-MT) on the Dynavision D2. The dependent variables were compared with a 2 (group) × 2 (time) repeated measures ANOVAs. Results: There was no group interaction in A* average score (F(1,24)=0.036, P=0.849), SVRT-RT (F(1,22)=0.319, P=0.575), and SVRT-MT (F(1,22)=1.179, P=0.188). There was a main effect for time on A* average score (T1: 76.3±10.4 hits; T2: 82.7±11.2 hits; F(1,24)=38.1, P≀0.001) and SVRT-RT (T1: 0.31±0.04; T2: 0.29±0.04 s; F(1,22)=4.9, P=0.039). There was no main effect for SVRT-MT. There were no group differences at either time point. Conclusions: Among recently concussed collegiate student-athletes, no persistent deficits were identified in VMC beyond clinical recovery when assessed by Dynavision D2. This VMC exam may not provide a useful means of tracking recovery following concussion likely due to a substantial practice effect. Relevance for patients: While post-concussion neurophysiological deficits persist beyond clinical recovery, the laboratory based VMC assessment herein did not identify deficits at critical post-concussion time points. Therefore, other clinically translatable VMC assessments should be further investigated

    Sarin Exposures in A Cohort of British Military Participants in Human Experimental Research at Porton Down 1945-1987

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    Background The effects of exposure to chemical warfare agents in humans are topical. Porton Down is the UK’s centre for research on chemical warfare where, since WWI, a programme of experiments involving ~30000 participants drawn from the UK armed services has been undertaken. Objectives Our aim is to report on exposures to nerve agents, particularly sarin, using detailed exposure data not explored in a previous analysis. Methods In this paper, we have used existing data on exposures to servicemen who attended the human volunteer programme at Porton Down to examine exposures to nerve agents in general and to sarin in particular. Results Six principal nerve agents were tested on humans between 1945 and 1987. Of all 4299 nerve agent tests recorded, 3511 (82%) were with sarin, most commonly in an exposure chamber, with inhalation being the commonest exposure route (85%). Biological response to sarin exposure was expressed as percentage change in cholinesterase activity and, less commonly, change in pupil size. For red blood cell cholinesterase, median inhibition for inhalation tests was 41% (interquartile range 28–51%), with a maximum of 87%. For dermal exposures the maximum inhibition recorded was 99%. There was a clear association between increasing exposure to sarin and depression of cholinesterase activity but the strength and direction of the association varied by exposure route and the presence of chemical or physical protection. Pupil size decreased with increased exposure but this relationship was less clear when modifiers, such as atropine drops, were present. Conclusions These results, drawn from high quality experimental data, offer a unique insight into the effects of these chemical agents on humans

    Psychological therapies for people with intellectual disabilities : an updated systematic review and meta-analysis

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    Objective The aim of this systematic review and meta-analysis (PROSPERO 2020 CRD42020169323) was to evaluate the efficacy of psychological therapy for people with intellectual disabilities. Method A comprehensive literature search yielded 22,444 studies which were screened for eligibility. Studies were eligible for inclusion if a psychological therapy was delivered to people with intellectual disabilities compared to a group who did not receive the therapy. Thirty-three controlled trials were eligible for inclusion in the review, with 19 included within a DerSimonian-Laird random effects meta-analysis. Subgroup analysis was completed by clinical presentation, and by comparing randomised trials to non-randomised trials, and group-based to individually delivered psychotherapy. Results Following the removal of outliers, psychological therapy for a range of mental health problems was associated with a small and significant effect size, g = 0.43, 95% CI [0.20, 0.67], N = 698. There was evidence of heterogeneity and bias due to studies with small sample sizes and a lack of randomisation. Non-randomised studies were associated with a large effect size, g = 0.90, 95% CI [0.47, 1.32], N = 174, while randomised studies were associated with a small effect size, g = 0.36, 95% CI [0.17, 0.55], N = 438, excluding outliers. Individually delivered psychological therapy was associated with a small and non-significant effect size, g = 0.32, 95% CI [−0.01, 0.65], N = 146, while group-based interventions were associated with a small and significant effect size, g = 0.37, 95% CI [0.05, 0.68], N = 361, again, excluding outliers. Psychological therapy for anger was associated with a moderate effect size, g = 0.60, 95% CI [0.26, 0.93], N = 324, while treatment for depression and anxiety was associated with a small and non-significant effect size, g = 0.38, 95% CI [−0.10, 0.85], N = 216, after outliers were removed. Conclusions Studies are fraught with methodological weaknesses limiting the ability to make firm conclusions about the effectiveness of psychological therapy for people with intellectual disabilities. Improved reporting standards, appropriately powered and well-designed trials, and greater consideration of the nature and degree of adaptations to therapy are needed to minimise bias and increase the certainty of conclusions

    A systematic review and narrative synthesis of mental imagery tasks in people with an intellectual disability : implications for psychological therapies

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    Mental imagery is recognised for its role in both psychological distress and wellbeing, with mental imagery techniques increasingly being incorporated into psychological interventions. In this systematic review and narrative synthesis (PROSPERO 2021: CRD42021240930), we identify and evaluate the evidence base for the phenomenon and phenomenology of mental imagery in people with intellectual disabilities, to ascertain the applicability of such interventions for this population. Electronic searches of nine databases and grey literature identified relevant publications. Two reviewers independently assessed titles and abstracts of retrieved records (n = 8609) and full-text articles (n = 101) against eligibility criteria. Data were extracted and quality appraised. Forty-one papers met our eligibility criteria. The quality and designs were variable. Mental imagery was facilitated through ensuring participants understood tasks, providing opportunity to rehearse tasks (including using concrete prompts) and using scaffolding to help participants elaborate their responses. People with intellectual disabilities can engage with mental imagery, with appropriate adaptations, although the associated phenomenology has not been thoroughly investigated. Mental imagery interventions may be useful for people with intellectual disabilities with appropriate modifications

    Sertraline for anxiety in adults with a diagnosis of autism (STRATA) : study protocol for a pragmatic, multicentre, double-blind, placebo-controlled randomised controlled trial

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    Background: Selective serotonin reuptake inhibitors (SSRIs) are commonly prescribed to manage anxiety in adults with an autism diagnosis. However, their effectiveness and adverse effect profile in the autistic population are not well known. This trial aims to determine the effectiveness and cost-effectiveness of the SSRI sertraline in reducing symptoms of anxiety and improving quality of life in adults with a diagnosis of autism compared with placebo and to quantify any adverse effects. Methods: STRATA is a two-parallel group, multi-centre, pragmatic, double-blind, randomised placebo-controlled trial with allocation at the level of the individual. It will be delivered through recruiting sites with autism services in 4 regional centres in the United Kingdom (UK) and 1 in Australia. Adults with an autism diagnosis and a Generalised Anxiety Disorder Assessment (GAD-7) score ≄ 10 at screening will be randomised 1:1 to either 25 mg sertraline or placebo, with subsequent flexible dose titration up to 200 mg. The primary outcome is GAD-7 scores at 16 weeks post-randomisation. Secondary outcomes include adverse effects, proportionate change in GAD-7 scores including 50% reduction, social anxiety, obsessive-compulsive symptoms, panic attacks, repetitive behaviours, meltdowns, depressive symptoms, composite depression and anxiety, functioning and disability and quality of life. Carer burden will be assessed in a linked carer sub-study. Outcome data will be collected using online/paper methods via video call, face-to-face or telephone according to participant preference at 16, 24 and 52 weeks post-randomisation, with brief safety checks and data collection at 1–2, 4, 8, 12 and 36 weeks. An economic evaluation to study the cost-effectiveness of sertraline vs placebo and a QuinteT Recruitment Intervention (QRI) to optimise recruitment and informed consent are embedded within the trial. Qualitative interviews at various times during the study will explore experiences of participating and taking the trial medication. Discussion: Results from this study should help autistic adults and their clinicians make evidence-based decisions on the use of sertraline for managing anxiety in this population. Trial registration: ISRCTN, ISRCTN15984604. Registered on 08 February 2021. EudraCT 2019-004312-66. ANZCTR ACTRN12621000801819. Registered on 07 April 2021
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