“Over time it just becomes easier…”: parents of people with Angelman syndrome and Prader–Willi syndrome speak about their carer role

Purpose: This study investigated two of the stresses experienced by parents caring for offspring with Angelman syndrome (AS) and Prader–Willi syndrome (PWS) in Western Australia, and identified their coping strategies. Methods: Parents of 19 offspring with AS and PWS participated in the Family Stress and Coping Interview which provides a stress level score, and a discussion of stressors and coping methods associated with 24 life situations, two of which are reported. All text was examined using directed content analysis. Results: Family carers (14/19) reported high stress associated with the initial diagnosis of AS or PWS in their offspring; and finding time for themselves. Stressors identified included lack of quality information about the disorder, time constraints and physical and emotional tiredness. Parents adopted a variety of coping strategies, including learning about the disorder, accepting the situation, seeking instrumental and social supports and dealing with problems. Conclusions: No specific coping strategy was associated with reduced stress. However, parents felt that accurate and timely information during the diagnostic period helped. Parents used family and community support although there were difficulties accessing respite care. It is advised that government agencies, service providers, family members and peer support associations should provide practical and emotional support to assist the parents of offspring with AS and PWS, and indeed any form of intellectual disability, across the lifespan. Implications for Rehabilitation: Long-term caring for offspring with AS or PWS can involve considerable stress for parents. Stress has been associated with poorer health outcomes for parental carers. Parents need a variety of practical and emotional supports to cope with stress, including timely access to information

Trapping electrons in electrostatic traps over the surface of helium

We have observed trapping of electrons in an electrostatic trap formed over the surface of liquid helium-4. These electrons are detected by a Single Electron Transistor located at the centre of the trap. We can trap any desired number of electrons between 1 and $\sim 30$. By repeatedly ($\sim 10^3-10^4$ times) putting a single electron into the trap and lowering the electrostatic barrier of the trap, we can measure the effective temperature of the electron and the time of its thermalisation after heating up by incoherent radiation.Comment: Presented at QFS06 - Kyoto, to be published in J. Low Temp. Phys., 6 pages, 3 figure

Effectiveness of the ADEC as a level 2 screening test for young children with suspected autism spectrum disorders in a clinical setting

Background The Autism Detection in Early Childhood (ADEC) is a clinician-administered, Level 2 screening tool. A retrospective file audit was used to investigate its clinical effectiveness. Method Toddlers referred to an Australian child development service between 2008 and 2010 (N?=?53, M age?=?32.2 months) were screened with the ADEC. Their medical records were reviewed in 2013 when their mean age was 74.5 months, and the original ADEC screening results were compared with later diagnostic outcomes. Results The ADEC had good sensitivity (87.5%) and moderate specificity (62%). Three behaviours predicted autism spectrum disorders (ASDs): response to name, gaze switching, and gaze monitoring (p???.001). Conclusions The ADEC shows promise as a screening tool that can discriminate between young children with ASDs and those who have specific communication disorders or developmental delays that persist into middle childhood but who do not meet the criteria for ASDs

Microwave saturation of the Rydberg states of electrons on helium

We present measurements of the resonant microwave excitation of the Rydberg energy levels of surface state electrons on superfluid helium. The temperature dependent linewidth agrees well with theoretical predictions and is very small below 300 mK. Absorption saturation and power broadening were observed as the fraction of electrons in the first excited state was increased to 0.49, close to the thermal excitation limit of 0.5. The Rabi frequency was determined as a function of microwave power. The high values of the ratio of the Rabi frequency to linewidth confirm this system as an excellent candidate for creating qubits.Comment: 4 pages, 4 figure

Counting Individual Electrons on Liquid Helium

We show that small numbers of electrons, including a single electron, can be held in a novel electrostatic trap above the surface of superfluid helium. A potential well is created using microfabricated electrodes in a 5 micron diameter pool of helium. Electrons are injected into the trap from an electron reservoir on a helium microchannel. They are individually detected using a superconducting single-electron transistor (SET) as an electrometer. A Coulomb staircase is observed as electrons leave the trap one-by-one until the trap is empty. A design for a scalable quantum information processor using arrays of electron traps is presentedComment: 15 pages, 5 figure

Intersubband plasmons in quasi-one-dimensional electron systems on a liquid helium surface

The collective excitation spectra are studied for a multisubband quasi-one-dimensional electron gas on the surface of liquid helium. Different intersubband plasmon modes are identified by calculating the spectral weight function of the electron gas within a 12 subband model. Strong intersubband coupling and depolarization shifts are found. When the plasmon energy is close to the energy differences between two subbands, Landau damping in this finite temperature system leads to plasmon gaps at small wavevectors.Comment: To be published as a Rapid Communication in Phys. Rev.

Unrestricted Hartree-Fock theory of Wigner crystals

We demonstrate that unrestricted Hartree-Fock theory applied to electrons in a uniform potential has stable Wigner crystal solutions for $r_s \geq 1.44$ in two dimensions and $r_s \geq 4.5$ in three dimensions. The correlation energies of the Wigner crystal phases are considerably smaller than those of the fluid phases at the same density.Comment: 4 pages, 5 figure

Epidemiology of gastrostomy insertion for children and adolescents with intellectual disability

The largest group of recipients of pediatric gastrostomy have neurological impairment with intellectual disability (ID). This study investigated trends in first gastrostomy insertion according to markers of disadvantage and ID etiology. Linked administrative and health data collected over a 32-year study period (1983–2014) for children with ID born between 1983 and 2009 in Western Australia were examined. The annual incidence rate change over calendar year was calculated for all children and according to socioeconomic status, geographical remoteness, and Aboriginality. The most likely causes of ID were identified using available diagnosis codes in the linked data set. Of 11,729 children with ID, 325 (2.8%) received a first gastrostomy within the study period. The incidence rate was highest in the 0–2 age group and there was an increasing incidence trend with calendar time for each age group under 6 years of age. This rate change was greatest in children from the lowest socioeconomic status quintile, who lived in regional/remote areas or who were Aboriginal. The two largest identified groups of ID were genetically caused syndromes (15.1%) and neonatal encephalopathy (14.8%). Conclusion: Gastrostomy is increasingly used in multiple neurological conditions associated with ID, with no apparent accessibility barriers in terms of socioeconomic status, remoteness, or Aboriginality.What is Known:• The use of gastrostomy insertion in pediatrics is increasing and the most common recipients during childhood have neurological impairment, most of whom also have intellectual disability (ID).What is New:• Nearly 3% of children with ID had gastrostomy insertion performed, with the highest incidence in children under 3 years of age.• Gastrostomy use across different social groups was equitable in the Australian setting