Deprescribing psychotropic medicines for behaviours that challenge in people with intellectual disabilities: a systematic review.

BACKGROUND: Clear evidence of overprescribing of psychotropic medicines to manage behaviours that challenges in people with intellectual disabilities has led to national programmes within the U.K. such as NHS England's STOMP to address this. The focus of the intervention in our review was deprescribing of psychotropic medicines in children and adults with intellectual disabilities. Mental health symptomatology and quality of life were main outcomes. METHODS: We reviewed the evidence using databases Medline, Embase, PsycINFO, Web of Science, CINAHL and Open Grey with an initial cut-off date of 22nd August 2020 and an update on 14th March 2022. The first reviewer (DA) extracted data using a bespoke form and appraised study quality using CASP and Murad tools. The second reviewer (CS) independently assessed a random 20% of papers. RESULTS: Database searching identified 8675 records with 54 studies included in the final analysis. The narrative synthesis suggests that psychotropic medicines can sometimes be deprescribed. Positive and negative consequences were reported. Positive effects on behaviour, mental and physical health were associated with an interdisciplinary model. CONCLUSIONS: This is the first systematic review of the effects of deprescribing psychotropic medicines in people with intellectual disabilities which is not limited to antipsychotics. Main risks of bias were underpowered studies, poor recruitment processes, not accounting for other concurrent interventions and short follow up periods. Further research is needed to understand how to address the negative effects of deprescribing interventions. TRIAL REGISTRATION: The protocol was registered with PROSPERO (registration number CRD42019158079).

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

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.

Group CBT for men with intellectual disabilities and/or autism who have harmful sexual behaviour.

OBJECTIVES: Men with intellectual disabilities and/or autism sometimes engage in harmful sexual behaviour (HSB), but it may be harder for them to access treatment, than it is for non-disabled men. The aim of this study was to evaluate the effect of attending an adapted CBT group, known as SOTSEC-ID, on men with intellectual disabilities and/or autism who had HSB. METHOD: Ninety-eight men from intellectual disability services, who had ID and/or autism and a history of HSB were recruited, and they received group CBT for a year (46 of these men have been previously reported). Harmful sexual behaviour, sexual knowledge, distorted cognitions and victim empathy were measured before and after treatment, and at 6 month follow-up. RESULTS: There were low levels of further harmful sexual behaviour: 12% of men engaged in further HSB during the 1-year period of the group, and 8% engaged in further HSB in the 6-month follow-up period. There were also significant improvements in sexual knowledge, distorted cognitions and victim empathy following treatment, maintained at 6-month follow-up. Men with autism showed significantly more non-contact HSB, were less likely to have been interviewed by police and had higher rates of further HSB, compared to men without autism. CONCLUSIONS: It is concluded that SOTSEC-ID is a promising treatment for men with ID/autism and HSB. Nevertheless, the study had a number of limitations and lacked a control group, so there is now an urgent need for a proper controlled study.

Evaluation of an adapted version of the International Trauma Questionnaire for use by people with intellectual disabilities.

AIMS: The International Trauma Questionnaire (ITQ) is a novel assessment instrument that is aligned to the ICD-11 diagnoses of post-traumatic stress disorder (PTSD) and complex PTSD (CPTSD). The purpose of this study was to develop and evaluate an adapted version of the ITQ suitable for use by people with intellectual disabilities. METHODS: The ITQ-ID follows the original ITQ, using wording developed in collaboration with a focus group of people with intellectual disabilities The ITQ-ID was administered to 40 people with intellectual disabilities recruited from learning disability forensic and community settings, alongside a Trauma Information Form and the Impact of Event Scale-Intellectual Disabilities (IES-IDs). RESULTS: Most participants reported multiple traumatizing events. Around half of the participants met strict criteria for a diagnosis of PTSD, and around three quarters met looser criteria. Depending on definitions, between 66% and 93% of those who met criteria for PTSD also met criteria for a diagnosis of CPTSD. The ITQ-ID showed a single-component structure, with very good-to-excellent internal consistency, excellent test-retest reliability, and evidence of concurrent, discriminant, and content validity. SIGNIFICANCE: The results support the potential of the ITQ-ID for assessment of PTSD and CPTSD in people with intellectual disabilities in both clinical and research contexts and highlight the need for further validation work.

Mapping and identifying service models for community-based services for children with intellectual disabilities and behaviours that challenge in England.

BACKGROUND: One in five children with an intellectual disability in the UK display behaviours that challenge. Despite associated impacts on the children themselves, their families, and services, little research has been published about how best to design, organise, and deliver health and care services to these children. The purpose of this study was to describe how services are structured and organised ("service models") in England for community-based health and care services for children with intellectual disability who display behaviours that challenge. METHODS: Survey data about services were collected from 161 eligible community-based services in England. Staff from 60 of these services were also interviewed. A combination of latent class and descriptive analysis, coupled with consultation with family carers and professionals was used to identify and describe groupings of similar services (i.e., "service models"). RESULTS: The latent class analysis, completed as a first step in the process, supported a distinction between specialist services and non-specialist services for children who display behaviours that challenge. Planned descriptive analyses incorporating additional study variables were undertaken to further refine the service models. Five service models were identified: Child and Adolescent Mental Health Services (CAMHS) (n = 69 services), Intellectual Disability CAMHS (n = 28 services), Children and Young People Disability services (n = 25 services), Specialist services for children who display behaviours that challenge (n = 27 services), and broader age range services for children and/or adolescents and adults (n= 12 services). CONCLUSIONS: Our analysis led to a typology of five service models for community health and care services for children with intellectual disabilities and behaviours that challenge in England. Identification of a typology of service models is a first step in building evidence about the best provision of services for children with intellectual disabilities who display behaviours that challenge. The methods used in the current study may be useful in research developing service typologies in other specialist fields of health and care. STUDY REGISTRATION: Trial Registration: Current Controlled Trials ISRCTN88920546, Date assigned 05/07/2022.

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?

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.

Psychiatric inpatient admissions and discharges of people with intellectual disabilities: A time series analysis of English national data.

BACKGROUND: We examined whether a series of variables were related to the number of psychiatric inpatients using publicly available data about English psychiatric bed utilisation and NHS workforce. METHOD: Using linear regression, with auto-regressive errors, we examined relationships between variables over time using data from December 2013 to March 2021. RESULTS: Over time, the number of inpatients reduced by either 6.58 or 8.07 per month depending upon the dataset utilised, and the number of community nurses and community nursing support staff reduced by 7.43 and 2.14 nurses per month, respectively. Increasing numbers of consultant psychiatrists were associated with fewer inpatients over time. More care and treatment reviews (CTRs) were associated with more admissions over time, while more post-admission CTRs were associated with increased discharges over time. CONCLUSIONS: Future studies should examine whether psychiatric bed utilisation elsewhere within the NHS by people with intellectual disabilities has increased.

Stakeholder perspectives on intensive support teams for adults with intellectual disabilities who display behaviour that challenges in England.

BACKGROUND: Adults with intellectual disabilities often display behaviour that challenges that is a result of biological differences, psychological challenges, and lack of appropriate social support. Intensive Support Teams (IST) are recommended to support the care needs of this group and avoid hospitalisation. However, little attention has been paid to the perspectives of stakeholders who manage, work in, or use ISTs. METHOD: Interviews and focus groups were conducted with 50 stakeholders (IST service managers and professionals, adults with intellectual disabilities, and family and paid carers) of ISTs. Services operated according to one of two service models previously identified in ISTs in England (enhanced or independent). RESULTS: Thematic analysis identified accessible and flexible support, individualised care, and the involvement of carers and other relevant agencies in management plans and reviews as features of good IST care highlighted by all stakeholder groups. IST managers and professionals described the key challenges of current IST provision as unclear referral criteria, limited interfaces with other local services, and perceived threats associated with funding and staff retention. Findings were similar between the two IST models. CONCLUSIONS: ISTs are able to offer care and specialist support that is valued by families, service users and other care providers. However, they face several operational challenges that should be addressed if ISTs are to reach their potential along with community intellectual disability services in supporting adults with intellectual disabilities who display behaviour that challenges in the community.

Using Precision Teaching to Improve Typically Developing Student's Mathematical Skills Via Teleconferencing.

This study evaluated the effects of Precision Teaching in improving typically developing students' mathematical skills when delivered via teleconferencing in India. Four students received Precision Teaching, while nine acted as control participants. Precision teaching involved instruction in three mathematical skills; two prerequisite skills and the primary skill of mixed addition and subtraction facts. Instruction included untimed practice, timed practice, goal-setting, graphing, and a token economy. Participants who received Precision Teaching received ten practice sessions for the prerequisite skills and 55 sessions for the primary skill. The results demonstrated improvements in the prerequisite skills of varied magnitude and considerable improvements in the primary skill, which were maintained above baseline performance levels. In addition, those who received Precision Teaching were below the 15th percentile rank at the initial assessment and above the 65th percentile at the post-intervention assessment in the math fluency subtest of the Kaufman Test of Educational Achievement-Third Edition. Control participants did not demonstrate similar improvements. Results suggest that Precision Teaching could produce accelerated outcomes even when delivered via teleconferencing. Therefore, it could be a valuable system for helping students ameliorate potential learning losses resulting from the COVID-19 pandemic.

The development of the Adapted Firesetting Assessment Scale.

BACKGROUND: Treatment for adults who set fires relies upon valid and reliable assessment. Research is needed to ensure self-report measures are available for adults with neurodevelopmental disabilities and that they are robust. METHOD: Qualitative and quantitative data from three rounds of a Delphi exercise with practitioners and a focus group discussion with adults with neurodevelopmental disabilities were used to generate consensus about the accessibility of item adaptations made to the Fire Interest Rating Scale, Fire Attitudes Scale, and the Identification with Fire Questionnaire. RESULTS: Findings suggested the accessibility of current measures could be improved to better meet the needs of adults with neurodevelopmental disabilities and adaptations to all questionnaire items were needed. CONCLUSION: Following feedback, revisions to current measures were implemented leading to the development of the Adapted Firesetting Assessment Scale with improved accessibility for adults with neurodevelopmental disabilities.

'There isn't a checklist in the world that's got that on it': Special needs teachers' opinions on the assessment and teaching priorities of pupils on the autism spectrum.

Two focus groups were conducted with special needs teachers to: (a) identify barriers to learning for autistic pupils, (b) consider broad assessment domains and specific skills or behaviours which teachers consider important for these pupils, and (c) give their opinions on teacher assessments. Data analysis resulted in six main themes: (a) barriers to learning, (b) teacher priorities for autistic pupils, (c) ways of overcoming barriers, (d) the concept of 'true mastery', (e) assessing the bigger picture, and (f) practicalities of assessment. Results showed that teachers have priorities for the pupils they know well and concerns about the assessments they regularly use. To ensure face and content validity of teacher assessments, and for assessments to be useful to and valued by the teachers who use them, it is recommended that teachers have opportunities to input during various aspects of the assessment development process.

Psychiatry and neurodevelopmental disorders: experts by experience, clinical care and research.

People with neurodevelopmental disorders often present with challenging behaviours and psychiatric illnesses. Diagnosis and treatment require patients, families and healthcare professionals to work closely together in partnership, acknowledging their respective areas of expertise. Good treatment outcomes should also be underpinned by robust research evidence. Key research priorities are highlighted.

Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales.

OBJECTIVE: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales. METHODS: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi-authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis. RESULTS: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognized, guidance provided was imprecise. CONCLUSIONS: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence-based guidance is indicated. PATIENT OR PUBLIC CONTRIBUTION: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings.

Attentional bias toward negative and positive pictorial stimuli and its relationship with distorted cognitions, empathy, and moral reasoning among men with intellectual disabilities who have committed crimes.

The aims of this study were to examine: (a) whether men with intellectual disabilities who have a history of criminal offending attend to affective pictorial stimuli in a biased manner, and (b) whether there is a relationship between an affective attentional bias and offense-supportive cognitions, empathy, and moral reasoning. Forty-six men with intellectual disabilities who had a documented history of criminal offending, and 51 men who also had intellectual disabilities, but no such history, were recruited and asked to complete a computer-based dot-probe task using affective pictorial stimuli with randomization, along with measures of distorted cognitions, empathy, and moral reasoning. Those with a history of criminal offending endorsed significantly more offense-supportive cognitions, had significantly lower general empathy, and more "mature" moral reasoning, as well as a significant attentional bias toward affective pictorial stimuli. Attentional bias significantly predicted offense-supportive cognitions, and vice versa, having controlled for offense history, and Full-Scale IQ, but this was not the case for empathy or moral reasoning. While the findings require replication, interventions that aim to modify attention bias with this population should be tested.

The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown period.

BACKGROUND: Recent COVID-19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. AIM: The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. METHODS: Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis. RESULTS: Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future. CONCLUSIONS: All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well-being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.

"I feel that if I didn't come to it anymore, maybe I would go back to my old ways and I don't want that to happen": Adapted sex offender treatment programmes: Views of service users with autism spectrum disorders.

BACKGROUND: The cognitive and behavioural profile associated with autism spectrum disorders (ASD) includes difficulties with social interaction, communication and empathy. Each of these may present barriers to effective participation in sexual offending treatment, leading to poorer outcomes. METHOD: Semi-structured interviews were conducted with 13 men with autism and an intellectual disability (including the borderline range) who had completed an adapted sex offender treatment programme. Grounded Theory was used to explore the men's experiences of treatment and perceptions of risk. RESULTS: The men's perceptions of sexual risk were inextricably linked to constructs of identity and shaped their opinions of treatment effectiveness. Risk of reoffending was conveyed through narratives of changes in self and circumstances and included notions of blame and culpability. CONCLUSIONS: The findings illustrated some clear benefits for men with ASD associated with attending adapted sex offender treatment programmes, including delivery of treatment within groups and opportunities for social development. The study supports the view that difficulties with empathy and cognitive flexibility complicates treatment for sexual offending.

An open randomized controlled trial of the effects of linguistic simplification and mediation on the comprehension of "easy read" text by people with intellectual disabilities.

BACKGROUND: This trial aimed to measure the effects of extrinsic and intrinsic factors on users' comprehension of health information provided in adapted written "easy read" material. METHOD: Sixty adults with intellectual disabilities undertook The Easy Read Task, randomly allocated with stratification by reading ability to one of four conditions (with and without simplified language/with and without mediation). RESULTS: Neither linguistic complexity of the text nor mediation independently or combined made a significant difference to the understanding of information. Post hoc testing revealed that the group who received simplified language with mediation performed significantly better than the group that had complex text with mediation. None of the other differences between the remaining groups were significant. CONCLUSIONS: Constructing meaning needs to extend beyond a consideration of form as found in "easy read" documents to recognize the role of individual capacity for language processing.

Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities.

INTRODUCTION: The measures implemented to manage the COVID-19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers. METHOD: Informal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online questionnaire. Almost all the data were collected while strict lockdown conditions were in place. RESULTS: Relative to carers of children without intellectual disability, carers of both children and adults with intellectual disability had significantly greater levels of a wish fulfilment coping style, defeat/entrapment, anxiety, and depression. Differences were 2-3 times greater than reported in earlier pre-pandemic studies. Positive correlations were found between objective stress scores and all mental health outcomes. Despite their greater mental health needs, carers of those with intellectual disability received less social support from a variety of sources. CONCLUSIONS: The greater mental health needs of carers in the context of lesser social support raises serious concerns. We consider the policy implications of these findings.

Development and Validation of a Modified Multiple Errands Test for Adults with Intellectual Disabilities.

BACKGROUND: The aims of the current study were to adapt a version of the MET for people with intellectual disabilities and assess its ecological and construct validity. MATERIAL AND METHODS: Using a correlational design, 40 participants with intellectual disabilities were invited to complete a battery of neuropsychological assessments and the modified Multiple Errands Test for Intellectual Disabilities (mMET-IDs). RESULTS: The ability to successfully complete tasks on the mMET-IDs correlated significantly with measures of the Supervisory Attentional System, namely, the Tower of London Test and the Six Parts Test. However, performance on the mMET-IDs and the Six Parts Test could be accounted for by Verbal IQ and receptive vocabulary. The mMET-IDs failed to correlate with the DEX-IR. CONCLUSIONS: The mMET-IDs can be successfully used to assess some aspects of the Supervisory Attentional System in people with intellectual disabilities. Further development is needed, however, to improve the ecological validity of the mMET-IDs.

The neural correlates of moral decision-making: A systematic review and meta-analysis of moral evaluations and response decision judgements.

The aims of this systematic review were to determine: (a) which brain areas are consistently more active when making (i) moral response decisions, defined as choosing a response to a moral dilemma, or deciding whether to accept a proposed solution, or (ii) moral evaluations, defined as judging the appropriateness of another's actions in a moral dilemma, rating moral statements as right or wrong, or identifying important moral issues; and (b) shared and significantly different activation patterns for these two types of moral judgements. A systematic search of the literature returned 28 experiments. Activation likelihood estimate analysis identified the brain areas commonly more active for moral response decisions and for moral evaluations. Conjunction analysis revealed shared activation for both types of moral judgement in the left middle temporal gyrus, cingulate gyrus, and medial frontal gyrus. Contrast analyses found no significant clusters of increased activation for the moral evaluations-moral response decisions contrast, but found that moral response decisions additionally activated the left and right middle temporal gyrus and the right precuneus. Making one's own moral decisions involves different brain areas compared to judging the moral actions of others, implying that these judgements may involve different processes.