Replacing home visits with telephone calls to support parents implementing a sleep management intervention : findings from a pilot study and implications for future research

Background - Resource constraints may inhibit the provision of appropriate interventions for children with neurodisabilities presenting with behavioural sleep problems. Telephone calls (TC), as opposed to home visits (HV), may be a more resource efficient means of supporting these families. Objective - To conduct a preliminary investigation exploring the feasibility and acceptability of replacing HV with TC to support parents implementing sleep management strategies and to gather evidence to inform the design and methods of a full trial. Methods - Parents referred to a sleep management intervention routinely delivered by a community paediatric team were alternately allocated to receive implementation support via HV (n = 7) or TC (n = 8). Activity logs recorded the frequency, duration and mode of support. Parents and practitioners were interviewed about their experiences of receiving/delivering the intervention. Results - Intervention drop-out was low, the frequency, number of contacts and intervention duration appeared comparable. Parents allocated TC received less contact time. Parents valued implementation support irrespective of delivery mode and practitioners reported that despite initial reservations, implementation support via TC appeared to work well. Conclusions - TC appears an acceptable and convenient mode of delivering sleep support, valued by both parents and practitioners. We recommend a full-scale trial to investigate effectiveness

Keeping children safe : allegations concerning the abuse or neglect of children in care

For most looked after children and young people, foster and residential care provides a safe environment. This study has focused on the minority of children who do not always receive safe care and who, in some instances, experience abuse or neglect at the hands of those responsible for ensuring their wellbeing. Despite long-standing concerns about historic abuse in children's homes and about the implications of allegations for foster carers and their families, very little is known about the extent of these allegations. We know even less about the proportion of allegations that are substantiated, the nature of the abuse and neglect experienced by some children in care settings and the characteristics of the adults and children involved. The aim of this study was to investigate these important questions. It provides new UK evidence on: * the number of allegations against foster carers and residential social workers and the proportion of these that are substantiated * the extent and nature of confirmed abuse and neglect in foster and residential care * the characteristics of the children and adults concerned

Household finances of Carer's Allowance recipients

This report presents findings from qualitative research into the experiences of people claiming or with an underlying entitlement to Carer's Allowance (CA). The findings are based on in-depth interviews with 44 people who claimed CA or had an underlying entitlement to it, in three areas of the UK in summer 2013. The aim of the research was to better understand the following research questions: • How is CA viewed in terms of the household budget, and does this vary by type of household? • How do recipients use CA and what would be the impact of non-receipt? • How does the use of CA vary depending on who is being cared for and where? • What led to the decision to claim CA? • Has receipt of CA had different impacts at different times of the caring career? • What impact has caring had on labour market participation

Reablement services for people at risk of needing social care: the MoRe mixed-methods evaluation.

Background Reablement is an intensive, time-limited intervention for people at risk of needing social care or increased intensity of care. Differing from homecare, it seeks to restore functioning and self-care skills. In England, it as a core element of intermediate care. The existing evidence base is limited. Aims Describe reablement services in England and develop a service model typology; Conduct a mixed method comparative evaluation of service models investigating outcomes, factors impacting outcomes, costs and cost-effectiveness, and user and practitioner experiences; Investigate specialist reablement services/practices for people with dementia. Methods Work package 1 (WP1), taking place in 2015, surveyed reablement services in England. Data were collected on organisational characteristics, service delivery and practice, and service costs and caseload. Work package 2 (WP2) was an observational study of three reablement services, each representing a different service model. Data collected included: health- (EQ-5D-5L) and social care-related (ASCOT SCT-4) quality of life, practitioner (Barthel Index) and self-reported (NEADL scale) functioning, individual and service characteristics, and resource use. It was collected on entry into reablement (n=186), at discharge (n=128) and, for those reaching the timepoint within the study timeline, six months post-discharge (n=64). Interviews with staff and service users explored experiences of delivering or receiving reablement and its perceived impacts. Work package 3 (WP3) interviewed staff in eight reablement services to investigate experiences of reabling people with dementia. Results 201 services, located in 139 Local Authorities took part in the survey. Services varied in their organisational base, relationship with other intermediate care services, use of out-sourced providers, skill mix, and scope of reablement input. These characteristics influenced aspects of service delivery and practice. Average cost per case was £1,728. Lower than expected sample sizes meant a comparison of service models in WP2 was not possible. Findings are preliminary. At T1, significant improvements in mean score on outcome measures except self-reported functioning were observed. Further improvements were observed at T2, but only significant for self-reported functioning. There was some evidence that individual (e.g. engagement, mental health) and service (e.g. service structure) characteristics were associated with T1 outcomes and resource use. Staff views on factors affecting outcomes typically aligned with, or offered possible explanations for, these associations. However, it was not possible to establish the significance of these findings in terms of practice or commissioning decisions. Service users expressed satisfaction with reablement and identified two core impacts: regained independence and, during reablement, companionship. Staff participating in WP3 believed people with dementia can benefit from reablement, but objectives may differ and expectations for regained independence inappropriate. Furthermore, practice (e.g. duration of home visits) should be adjusted and staff adequately trained. Conclusions The study contributes to our understanding of reablement, and what impacts on outcomes and costs. Staff believe reablement can be appropriate for people with dementia. Findings will be of interest to commissioners and service managers. Future research should further investigate factors impacting on outcomes, and reabling people with dementia

Informing the development of Australia's national eating disorders research and translation strategy : a rapid review methodology

Background Eating disorders (EDs) are highly complex mental illnesses associated with significant medical complications. There are currently knowledge gaps in research relating to the epidemiology, aetiology, treatment, burden, and outcomes of eating disorders. To clearly identify and begin addressing the major deficits in the scientific, medical, and clinical understanding of these mental illnesses, the Australian Government Department of Health in 2019 funded the InsideOut Institute (IOI) to develop the Australian Eating Disorder Research and Translation Strategy, the primary aim of which was to identify priorities and targets for building research capacity and outputs. A series of rapid reviews (RR) were conducted to map the current state of knowledge, identify evidence gaps, and inform development of the national research strategy. Published peer-reviewed literature on DSM-5 listed EDs, across eight knowledge domains was reviewed: (1) population, prevalence, disease burden, Quality of Life in Western developed countries; (2) risk factors; (3) co-occurring conditions and medical complications; (4) screening and diagnosis; (5) prevention and early intervention; (6) psychotherapies and relapse prevention; (7) models of care; (8) pharmacotherapies, alternative and adjunctive therapies; and (9) outcomes (including mortality). While RRs are systematic in nature, they are distinct from systematic reviews in their aim to gather evidence in a timely manner to support decision-making on urgent or high-priority health concerns at the national level. Results Three medical science databases were searched as the primary source of literature for the RRs: Science Direct, PubMed and OVID (Medline). The search was completed on 31st May 2021 (spanning January 2009-May 2021). At writing, a total of 1,320 articles met eligibility criteria and were included in the final review. Conclusions For each RR, the evidence has been organised to review the knowledge area and identify gaps for further research and investment. The series of RRs (published separately within the current series) are designed to support the development of research and translation practice in the field of EDs. They highlight areas for investment and investigation, and provide researchers, service planners and providers, and research funders rapid access to quality current evidence, which has been synthesised and organised to assist decision-making

Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort

© 2016 Elsevier Ltd Body concealment is an important component of appearance distress for individuals with disfiguring conditions, including scleroderma. The objective was to replicate the validation study of the Body Concealment Scale for Scleroderma (BCSS) among 897 scleroderma patients. The factor structure of the BCSS was evaluated using confirmatory factor analysis and the Multiple-Indicator Multiple-Cause model examined differential item functioning of SWAP items for sex and age. Internal consistency reliability was assessed via Cronbach's alpha. Construct validity was assessed by comparing the BCSS with a measure of body image distress and measures of mental health and pain intensity. Results replicated the original validation study, where a bifactor model provided the best fit. The BCSS demonstrated strong internal consistency reliability and construct validity. Findings further support the BCSS as a valid measure of body concealment in scleroderma and provide new evidence that scores can be compared and combined across sexes and ages

Finishing the euchromatic sequence of the human genome

The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead

Genomic Relationships, Novel Loci, and Pleiotropic Mechanisms across Eight Psychiatric Disorders

Genetic influences on psychiatric disorders transcend diagnostic boundaries, suggesting substantial pleiotropy of contributing loci. However, the nature and mechanisms of these pleiotropic effects remain unclear. We performed analyses of 232,964 cases and 494,162 controls from genome-wide studies of anorexia nervosa, attention-deficit/hyper-activity disorder, autism spectrum disorder, bipolar disorder, major depression, obsessive-compulsive disorder, schizophrenia, and Tourette syndrome. Genetic correlation analyses revealed a meaningful structure within the eight disorders, identifying three groups of inter-related disorders. Meta-analysis across these eight disorders detected 109 loci associated with at least two psychiatric disorders, including 23 loci with pleiotropic effects on four or more disorders and 11 loci with antagonistic effects on multiple disorders. The pleiotropic loci are located within genes that show heightened expression in the brain throughout the lifespan, beginning prenatally in the second trimester, and play prominent roles in neurodevelopmental processes. These findings have important implications for psychiatric nosology, drug development, and risk prediction.Peer reviewe