The views of psychiatrists on proposed changes to the England and Wales Mental Health Act 1983 legislation for people with intellectual disability: A national study.

BACKGROUND: The Draft Mental Health Bill proposes removal of both intellectual disability and autism from Section 3 of the Mental Health Act for England and Wales (MHA). This would lead to people with intellectual disability (PwID) and/or autism could not be detained beyond 28 days, in the absence of diagnosed co-occurring mental illness. AIM: To obtain views of psychiatrists working with PwID in England and Wales regarding the proposed MHA changes. This study focusses specifically on the impact on PwID. METHODS: A cross-sectional online mixed methodology survey of Likert and free-text response questions was developed, to ascertain perceptions of proposed legislative changes to the MHA. A non-discriminatory exponential snowballing technique leading to non-probability sampling was used to disseminate the survey. Quantitative data was analysed using descriptive statistics, Mann-Whitney and Fisher's exact tests. Thematic analysis was conducted on free text responses. RESULTS: A total of 82 psychiatrists (33%) from approximately 250 eligible completed the survey. Nearly two-thirds (64%) reported good awareness of the proposed changes, with over half (55%) reporting disagreement with the changes. Psychiatrists working in inpatient settings for PwID reported increased awareness of the changes, less agreement with the reforms, and increased expectations of the reforms having negative unintended consequences, compared to their peers working exclusively in the community. Consultants reported greater disagreement with the changes compared to their non-consultant peers. Qualitative analysis identified five main themes: impact on diagnosis and treatment, seeking alternative options, introducing inequities, resources, and meeting holistic care goals through the Care, Education and Treatment Reviews (CETR) process. CONCLUSION: Psychiatrists working with PwID report widespread disagreement with the proposed changes to the MHA for PwID, with greater levels of disagreement among those working in inpatient services. Caution with respect to the proposed changes, and monitoring of the impact of the changes if implemented, is advised.

Who cares? A scoping review on intellectual disability, epilepsy and social care.

PURPOSE: Nearly a quarter of people with Intellectual disability (PwID) have epilepsy. Many have seizures across their lifetime. In the UK supporting their epilepsy linked risks and needs, particularly in professional care settings and in the community, requires significant social care input. Therefore, the interface between social and health care services is important. This study aim is to identify key intersectional areas of social provision for PWID and epilepsy. METHODS: A scoping review of the literature was performed in accordance with PRISMA guidance with suitable search terms. The search was completed in CINAHL, Embase, Psych INFO, SCIE, and Cochrane electronic databases by an information specialist. A quality assessment was completed for the included studies where appropriate. The included studies were analysed qualitatively to identify key themes and provide a narrative description of the evidence by two reviewers. RESULTS: Of 748 papers screened, 94 were retrieved. Thirteen articles met the inclusion criteria with a range of methodologies. A thematic analysis generated four key categories for significant social care involvement i.e., staff training and education; emergency seizure management; holistic approach to care; and nocturnal monitoring and supervision. CONCLUSIONS: PwID with epilepsy have support needs that require fulfilling by various aspects of special care provision, many within the social ambit. Inspite of evidence of these needs and recurrent calls to work jointly with social care providers this has not happened. There is limited research into social care role in epilepsy management in PwID which needs addressing.

International clinician perspectives on pandemic-associated stress in supporting people with intellectual and developmental disabilities.

BACKGROUND: People living with intellectual and developmental disabilities (IDD) have suffered disproportionately in health outcomes and general well-being during the COVID-19 pandemic. There is emerging evidence of increased psychological distress. Increased strain has also fallen on clinicians managing the psychological needs of people with IDD, in the context of learning new technologies, staff shortages, reduced services and paused training opportunities. AIMS: To examine clinicians' experiences of patient care, clinical management and the impact of care delivery. METHOD: A mixed fixed-response and free-text survey comprising 28 questions covering four areas (responder demographics, clinical practice, changes to local services and clinician experiences) was developed, using the STROBE guidance. It was disseminated through an exponential snowballing technique to clinicians in seven high-income countries. Quantitative data were analysed and presented with Microsoft Excel. Qualitative data were coded and thematically analysed, and presented with in-text quotations. RESULTS: There were 139 respondents, mostly senior physicians (71%). Two-thirds reported over 10 years working in the field. Quantitative findings include increased clinician stress (77%), referrals (53%), patient distress presentations (>70%), patient isolation (73%) and carer burden (89%), and reduced patient participation in daily activities (86%). A third reported increased psychotropic prescribing. Qualitative analysis outlined changes to clinical practice, particularly the emergence and impact of telehealth. CONCLUSIONS: In the countries surveyed, the pandemic has not only had a significant impact on people with IDD, but also their carers and clinicians. A proactive, holistic international response is needed in preparedness for future public health emergencies.

International multicentre randomised controlled trial of improvisational music therapy for children with autism spectrum disorder: TIME-A study.

BACKGROUND: Preliminary studies have indicated that music therapy may benefit children with autism spectrum disorders (ASD). OBJECTIVES: To examine the effects of improvisational music therapy (IMT) on social affect and responsiveness of children with ASD. DESIGN: International, multicentre, three-arm, single-masked randomised controlled trial, including a National Institute for Health Research (NIHR)-funded centre that recruited in London and the east of England. Randomisation was via a remote service using permuted blocks, stratified by study site. SETTING: Schools and private, voluntary and state-funded health-care services. PARTICIPANTS: Children aged between 4 and 7 years with a confirmed diagnosis of ASD and a parent or guardian who provided written informed consent. We excluded children with serious sensory disorder and those who had received music therapy within the past 12 months. INTERVENTIONS: All parents and children received enhanced standard care (ESC), which involved three 60-minute sessions of advice and support in addition to treatment as usual. In addition, they were randomised to either one (low-frequency) or three (high-frequency) sessions of IMT per week, or to ESC alone, over 5 months in a ratio of 1 : 1 : 2. MAIN OUTCOME MEASURES: The primary outcome was measured using the social affect score derived from the Autism Diagnostic Observation Schedule (ADOS) at 5 months: higher scores indicated greater impairment. Secondary outcomes included social affect at 12 months and parent-rated social responsiveness at 5 and 12 months (higher scores indicated greater impairment). RESULTS: A total of 364 participants were randomised between 2011 and 2015. A total of 182 children were allocated to IMT (90 to high-frequency sessions and 92 to low-frequency sessions), and 182 were allocated to ESC alone. A total of 314 (86.3%) of the total sample were followed up at 5 months [165 (90.7%) in the intervention group and 149 (81.9%) in the control group]. Among those randomised to IMT, 171 (94.0%) received it. From baseline to 5 months, mean scores of ADOS social affect decreased from 14.1 to 13.3 in music therapy and from 13.5 to 12.4 in standard care [mean difference: music therapy vs. standard care = 0.06, 95% confidence interval (CI) -0.70 to 0.81], with no significant difference in improvement. There were also no differences in the parent-rated social responsiveness score, which decreased from 96.0 to 89.2 in the music therapy group and from 96.1 to 93.3 in the standard care group over this period (mean difference: music therapy vs. standard care = -3.32, 95% CI -7.56 to 0.91). There were seven admissions to hospital that were unrelated to the study interventions in the two IMT arms compared with 10 unrelated admissions in the ESC group. CONCLUSIONS: Adding IMT to the treatment received by children with ASD did not improve social affect or parent-assessed social responsiveness. FUTURE WORK: Other methods for delivering music-focused interventions for children with ASD should be explored. TRIAL REGISTRATION: Current Controlled Trials ISRCTN78923965. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 21, No. 59. See the NIHR Journals Library website for further project information.

A Systematic Review of Animal-Assisted Therapy on Psychosocial Outcomes in People with Intellectual Disability.

The aim of the study was to review the literature on animal assisted therapy (AAT) in people with intellectual disabilities (ID) measuring psychosocial outcomes (behavioural, social, cognitive and emotional). Quantitative studies were found through a systematic search that identified studies using AAT in people with ID and measuring psychosocial outcomes (behavioural, cognitive, emotional and social). The quality of studies was assessed using a standardised tool and rated as strong, moderate or weak. Only published articles from peer-reviewed journals were included. No language or age restrictions were applied. Over half of the included studies were identified outside standard database searches (e.g. hand searching reference lists from included articles, references from AAT websites and using Google Scholar and a Grey Literature Database). Ten studies were included in the final review; two were rated as moderate quality and eight were rated as weak quality. Overall there was a positive improvement reported from studies for all psychosocial outcomes (with some cognitive, behavioural, social, emotional components reaching statistical significance p ≤ 0.01). Despite having no age restrictions, the included studies had participants that were mainly children and adolescents, in particular favouring male participants, which may limit generalisation. More rigorous methodology is required to improve the quality of future studies including in the main multicentre randomised designs and improved reporting according to CONSORT criteria. Further research should expand to include adults with ID and specific disorders such as challenging behaviour or mental illness.

Pharmacological interventions for challenging behaviour in children with intellectual disabilities: a systematic review and meta-analysis.

BACKGROUND: Psychotropic medications are frequently used to treat challenging behaviour in children with intellectual disabilities, despite a lack of evidence for their efficacy. This systematic review and meta-analysis aimed to determine the safety and efficacy of pharmacological interventions for challenging behaviour among children with intellectual disabilities. METHODS: Electronic databases were searched and supplemented with a hand search of reference lists and trial registries. Randomised controlled trials of pharmacological interventions for challenging behaviour among children with intellectual disabilities were included. Data were analysed using meta-analysis or described narratively if meta-analysis was not possible. For quality assessment, the Cochrane Risk of Bias tool and the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach were used. RESULTS: Fourteen studies including 912 participants met inclusion criteria. Antipsychotic medication reduced challenging behaviour among children with intellectual disabilities in the short-term (SMD = -1.09, p < 0.001 for risperidone; SMD = -0.64, p <0.001 for aripiprazole). However, there were significant side-effects including elevated prolactin levels (SMD = 3.22, p < 0.001) and weight gain (SMD = 0.82, p < 0.001). Evidence was inconclusive regarding the effectiveness of anticonvulsants and antioxidants for reducing challenging behaviour. The quality of all evidence was low and there were no long term follow up studies. CONCLUSIONS: Antipsychotic medications appear to be effective for reducing challenging behaviour in the short-term among children with intellectual disabilities, but they carry a risk of significant side effects. Findings from this review must be interpreted with caution as studies were typically of low quality and most outcomes were based on a small number of studies. Further long-term, high-quality research is needed to determine the effectiveness and safety of psychotropic medication for reducing challenging behaviour.

Behavioural and cognitive-behavioural interventions for outwardly-directed aggressive behaviour in people with intellectual disabilities.

BACKGROUND: Outwardly-directed aggressive behaviour is a significant part of problem behaviours presented by people with intellectual disabilities. Prevalence rates of up to 50% have been reported in the literature, depending on the population sampled. Such behaviours often run a long-term course and are a major cause of social exclusion. This is an update of a previously published systematic review (see Hassiotis 2004; Hassiotis 2008). OBJECTIVES: To evaluate the efficacy of behavioural and cognitive-behavioural interventions on outwardly-directed aggressive behaviour in people with intellectual disabilities when compared to standard intervention or wait-list controls. SEARCH METHODS: In April 2014 we searched CENTRAL, Ovid MEDLINE, Embase, and eight other databases. We also searched two trials registers, checked reference lists, and handsearched relevant journals to identify any additional trials. SELECTION CRITERIA: We included studies if more than four participants (children or adults) were allocated by random or quasi-random methods to either intervention, standard treatment, or wait-list control groups. DATA COLLECTION AND ANALYSIS: Two review authors independently identified studies and extracted and assessed the quality of the data. MAIN RESULTS: We deemed six studies (309 participants), based on adult populations with intellectual disabilities, suitable for inclusion in the current version of this review. These studies examined a range of cognitive-behavioural therapy (CBT) approaches: anger management (three studies (n = 235); one individual therapy and two group-based); relaxation (one study; n = 12), mindfulness based on meditation (one study; n = 34), problem solving and assertiveness training (one study; n = 28). We were unable to include any studies using behavioural interventions. There were no studies of children.Only one study reported moderate quality of evidence for outcomes of interest as assessed by the Grades of Recommendations, Assessment, Development and Evaluation (GRADE) approach. We judged the evidence for the remaining studies to be of very low to low quality. Most studies were at risk of bias in two or more domains: one study did not randomly allocate participants and in two studies the process of randomisation was unclear; in one study there was no allocation concealment and in three studies this was unclear; blinding of assessors did not occur in three studies; incomplete outcome data were presented in one study and unclear in two studies; there was selective reporting in one study; and other biases were present in one study and unclear in four studies.Three of the six studies showed some benefit of the intervention on improving anger ratings. We did not conduct a meta-analysis, as we considered the studies too heterogeneous to combine (e.g. due to differences in the types of participants, sample size interventions, and outcome measures).Follow-up data for anger ratings for both the treatment and control groups were available for two studies. Only one of these studies (n = 161) had adequate long-term data (10 months), which found some benefit of treatment at follow-up (continued improvement in anger coping skills as rated by key workers; moderate-quality evidence).Two studies (n = 192) reported some evidence that the intervention reduces the number of incidents of aggression and one study (n = 28) reported evidence that the intervention improved mental health symptoms.One study investigated the effects of the intervention on quality of life and cost of health and social care utilisation. This study provided moderate-quality evidence, which suggests that compared to no treatment, behavioural or cognitive-behavioural interventions do not improve quality of life at 16 weeks (n = 129) or at 10 months follow-up (n = 140), or reduce the cost of health service utilisation (n = 133).Only one study (n = 28) assessed adaptive functioning. It reported evidence that assertiveness and problem-solving training improved adaptive behaviour.No studies reported data on adverse events. AUTHORS' CONCLUSIONS: The existing evidence on the effectiveness of behavioural and cognitive-behavioural interventions on outwardly-directed aggression in children and adults with intellectual disabilities is limited. There is a paucity of methodologically sound clinical trials and a lack of long-term follow-up data. Given the impact of such behaviours on the individual and his or her support workers, effective interventions are essential. We recommend that randomised controlled trials of sufficient power are carried out using primary outcomes that include reduction in outward-directed aggressive behaviour, improvement in quality of life, and cost effectiveness.