Photonic Topological Mode Bound to a Vortex.

We report the observation of a mode associated with a topological defect in the bulk of a 2D photonic material by introducing a vortex distortion to a hexagonal lattice analogous to graphene. The observed modes lie midgap at zero energy and are closely related to Majorana bound states in superconducting vortices. This is the first experimental demonstration of the Jackiw-Rossi model [R.

Quantum Refrigeration with Indefinite Causal Order.

We propose a thermodynamic refrigeration cycle which uses indefinite causal orders to achieve nonclassical cooling. The cycle cools a cold reservoir while consuming purity in a control qubit. We first show that the application to an input state of two identical thermalizing channels of temperature T in an indefinite causal order can result in an output state with a temperature not equal to T.

Using Bayesian methodology to explore the profile of mental health and well-being in 646 mothers of children with 13 rare genetic syndromes in relation to mothers of children with autism.

Background: It is well documented that mothers of children with intellectual disabilities or autism experience elevated stress, with mental health compromised. However, comparatively little is known about mothers of children with rare genetic syndromes. This study describes mental health and well-being in mothers of children with 13 rare genetic syndromes and contrasts the results with mothers of children with autism.

Effectiveness of Active Support for adults with intellectual disability in residential settings: Systematic review and meta-analysis.

Background: The review examined the effectiveness of Active Support (RQ1) and stakeholders' experiences of the model (RQ2).

Method: Data were meta-analysed (RQ1; studies = 14) and synthesized narratively (RQ2; studies = 10).

Results: By follow-up (6 months post-training), effect sizes (RQ1) for resident total activity engagement were significant and ranged from small (d = 0.

A pilot randomised controlled trial of community-led ANtipsychotic Drug REduction for Adults with Learning Disabilities.

Background: Data suggest that approximately 50,000 adults with learning disabilities (LDs) in England and Wales are currently prescribed antipsychotic medication. Illness in this population is common, including significant rates of challenging behaviour and mental illness, but there is particular concern over the use of antipsychotics prescribed for reasons other than the treatment of psychosis. Control of challenging behaviour is the primary reason why such medications are prescribed despite the absence of good evidence for any therapeutic effect for this purpose.

Direct Observation of the Behaviour of Females with Rett Syndrome.

The aim was to observe the behaviour of a sample of females with RTT and explore how it was organized in relation to environmental events. Ten participants, all with a less severe form of classic ( = 9) or atypical ( = 1) Rett syndrome (RTT), were filmed at home and at school or day centre. Analysis used real-time data capture software.

Change over a 16-month period in the psychological well-being of mothers of girls and women with Rett syndrome.

Purpose: There is an emerging research literature on the experiences of family members of girls and women with Rett syndrome (RTT), but a lack of longitudinal data.

Methods: Fifty mothers whose daughters had RTT were surveyed 16-17 months after an earlier cross-sectional study. Measures completed at both time points focused on maternal positive and negative psychological well-being and their daughters' behavioral and emotional problems and RTT behavioral phenotype severity.

Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome.

Few published studies have reported on the psychological well-being of family members of individuals with Rett syndrome (RTT). Eighty-seven mothers of girls and women with RTT completed a questionnaire survey about their daughters' behavioral phenotype, current health, and behavior problems, and their own and a sibling's well-being. Mothers reported increased anxiety but similar levels of depression when compared to a normative sample.

A national survey of Rett syndrome: age, clinical characteristics, current abilities, and health.

As part of a wider study to investigate the behavioral phenotype of a national sample of girls and women with Rett syndrome (RTT) in comparison to a well-chosen contrast group and its relationship to parental well-being, the development, clinical severity, current abilities and health of 91 participants were analyzed in relation to diagnostic, clinical and genetic mutation categories. Early truncating mutations or large deletions were associated with greater severity. Early regression was also associated with greater severity.

A national survey of Rett syndrome: behavioural characteristics.

Background: The aim was to gain a UK national sample of people with Rett syndrome (RTT) across the age range and compare their characteristics using a variety of relevant behavioural measures with a well-chosen contrast group.

Methods: The achieved sample was 91 girls and women, aged from 4 to 47 years, of whom 71 were known to be MECP2 positive. The contrast group (n = 66), matched for age, gender, language and self-help skills, comprised individuals with six other syndromes associated with intellectual disability.

Issues concerning self-report data and population-based data sets involving people with intellectual disabilities.

This article examines two methodological issues regarding ways of obtaining and analyzing outcome data for people with intellectual disabilities: (a) self-report and proxy-report data and (b) analysis of population-based data sets. Some people with intellectual disabilities have difficulties with self-reporting due to problems of understanding and communication. However, there are serious doubts about the validity of proxy data for subjective issues.

Development of a scale to measure fidelity to manualized group-based cognitive behavioural interventions for people with intellectual disabilities.

The context for the present study was a cluster-randomized controlled trial of a group-based anger-management intervention, delivered by day-service staff. We aimed to develop a scale to measure the fidelity of manualized cognitive-behavioural therapy (CBT) delivered to adults with intellectual disabilities in group-based settings. A 30-item monitoring instrument (the MAnualized Group Intervention Check: MAGIC) was adapted from an existing fidelity-monitor instrument for individual CBT.

Contact with primary care: the experience of people with intellectual disabilities.

Background: People with intellectual disabilities experience disparities in their health and health care. Annual health checks are intended to counter such disparity by improving access to primary health care. However, little is known about their experience of having a health check or other types of contact with primary care services.

Different factors influence self-reports and third-party reports of anger by adults with intellectual disabilities.

Background: Many people with intellectual disabilities display high levels of anger, and cognitive-behavioural anger management interventions are used routinely. However, for these methods to be used optimally, a better understanding is needed of different forms of anger assessment. The aim of this study was to investigate the relationship of a range of measures to self- and carer reports of anger expression, including instruments used to assess mental health and challenging behaviour.

Group-based cognitive-behavioural anger management for people with mild to moderate intellectual disabilities: cluster randomised controlled trial.

Background: Many people with intellectual disabilities find it hard to control their anger and this often leads to aggression which can have serious consequences, such as exclusion from mainstream services and the need for potentially more expensive emergency placements.

Aims: To evaluate the effectiveness of a cognitive-behavioural therapy (CBT) intervention for anger management in people with intellectual disabilities.

Method: A cluster-randomised trial of group-based 12-week CBT, which took place in day services for people with intellectual disabilities and was delivered by care staff using a treatment manual.

The experiences of staff taking on the role of lay therapist in a group-based cognitive behavioural therapy anger management intervention for people with intellectual disabilities.

Aim: To explore the experience of 'lay therapists' of a group-based cognitive behaviour therapy (CBT) anger management intervention.

Background: Staff employed in daytime opportunity services for adults with intellectual disabilities took on the role of 'lay therapist' to facilitate CBT groups.

Methods: They were trained and supervised by clinical psychologists and interviewed 2-6 weeks after the last group session.

Targeted support and telecare in staffed housing for people with intellectual disabilities: impact on staffing levels and objective lifestyle indicators.

Background: Increased provision of out-of-family residential support is required because of demographic changes within the intellectual disabilities population. Residential support now has to be provided in a climate requiring both financial constraint and high quality service outcomes. The aim was to evaluate the quality of life consequences of living with less intensive staff support, resulting from the introduction of more targeted staff allocation coupled with telecare.

A prospective case control study of psychiatric disorders in adults with epilepsy and intellectual disability.

Purpose: No study to date has prospectively investigated the impact of epilepsy on psychiatric disorders among adults with an intellectual disability (ID). This study aimed to determine prospectively the influence of epilepsy on the development of psychiatric disorders in adults with ID.

Method: Psychiatric symptoms were measured prospectively over a 1-year period among 45 adults with ID and active epilepsy and 45 adults with ID without epilepsy, matched on level of ID.

Anger management for people with mild to moderate learning disabilities: study protocol for a multi-centre cluster randomized controlled trial of a manualized intervention delivered by day-service staff.

Background: Cognitive behaviour therapy (CBT) is the treatment of choice for common mental health problems, but this approach has only recently been adapted for people with learning disabilities, and there is a limited evidence base for the use of CBT with this client group. Anger treatment is the one area where there exists a reasonable number of small controlled trials. This study will evaluate the effectiveness of a manualized 12-week CBT intervention for anger.

Behavior problems, psychiatric symptoms, and quality of life for older adults with intellectual disability with and without autism.

The evidence base on outcomes associated with autism in older adulthood is limited. The expected increase in the prevalence of older adults with autism highlights the need to describe their profiles and service needs. Adults 50 years or older with an intellectual disability (ID) and the triad of impairments characteristic of autism spectrum disorders (ASD) were compared to peers with ID only, and younger adults with ASD and ID.

A prospective multi-centre open label study of the use of levetiracetam as add-on treatment in patients with epilepsy and intellectual disabilities.

Purpose: To investigate the efficacy and safety of levetiracetam in adults with intellectual disabilities who have uncontrolled partial or generalised epilepsy.

Methods: An open label prospective study compared seizure frequency, adverse effects, participant challenging behaviour, carers' concerns about epilepsy and perceived participant quality of life between a baseline observation prior to the use of levetiracetam and follow-up observations at 3, 6, 9 and 12 months afterwards. Challenging behaviour, carers' concerns about epilepsy and perceived quality of life were assessed using standardized measures.

Outcomes and costs of community living: semi-independent living and fully staffed group homes.

In a matched-groups design, costs and quality of life outcomes for adults with intellectual disabilities with relatively low support needs were compared between those in fully staffed group homes (n = 35) and in semi-independent living (n = 35). Data were collected on participant characteristics, setting organization, various lifestyle outcomes, and costs. There were no differences in the majority of lifestyle outcome measures.