Stress and burnout amongst professional carers of people with intellectual disability : another health inequity

Purpose of review This paper summarizes trends in the research literature about stress and burnout in the lives of people who are the professional carers of people with intellectual disability. The principal time period considered was from 2004 to 2006. Recent findings Studies reviewed here focus on several themes including inequities affecting professional carers of people with intellectual disability and the possible effects of some models of care on inequities. Implications for people with intellectual disability are also considered. Summary The diaspora of people with intellectual disability into the community and their accompanying services found a whole new set of unpredicted and unprecedented challenges. Life in the community has rendered professional carers of people with intellectual disability more clearly vulnerable to stress and burnout for a variety of complex reasons, some identified and others as yet unrecognized. Lack of support and lack of role definition are particular problems. Presence of physical and mental health inequities result in major disparities in community care for people with intellectual disability.

The knowledge of doing: Exploring the knowledge of support to older people with an intellectual disability

This ethnography presents a contextualised understanding of frontline knowledge used in the support to people ageing with an intellectual disability who live in accommodation and support services in south-east Queensland. The study identified that disability support workers accessed a range of knowledges which they synthesised into a dynamic and responsive locale knowledge, and subsequently translated into everyday acts of support within contexts of multi-faceted complexity. Findings from the study have numerous implications for the knowledge development activities of formal service and educational systems within Australia's newly implemented National Disability Insurance Scheme.

Effective responses to offenders with intellectual disabilities : generalist and specialist services working together

Despite policies of deinstitutionalisation, many people with intellectual disabilities in developed western countries continue to live in mainstream institutional settings, such as correctional facilities, rather than in the community with support from disability services. This paper reports on the life stories of 10 people with intellectual disabilities, who had been imprisoned in adult correctional facilities in Queensland. The pathways taken by these 10 people into and out of prison are marked by significant abuse, neglect, and poverty. Significant disparity and disconnection is also displayed between the policies and service approaches, particularly between the disability, mental health, and correctional systems in Queensland. Based on these findings, a framework for practice, which spans both generic and specialist services, is suggested.

Experiences of leaving prison for people with intellectual disability

Purpose – The support given to prisoners when they leave prison has a bearing on their success in starting a new life and on community safety. This paper aims to examine the community re-entry experiences of ten people with an intellectual disability in Queensland, Australia. Design/methodology/approach – The findings in this paper are part of a wider study on the life stories of ex-prisoners with an intellectual disability. Seven male and three female participants with intellectual disability were interviewed using a semi-structured life story method. Interviews were respectful of the communication styles of participants and involved multiple interview sessions, ranging from two to nine interviews per person. Data were analysed using narrative and thematic analysis with the assistance of NVivo 8 software. Findings – Participants found the process of leaving prison an emotional event, often clouded with both confusion about when release was to occur, and uncertainly as to what they could expect on the outside. The need for concrete information and coordinated hands-on assistance in negotiating supports in the community have significant implications for correctional and community services. Originality/value – This study captures the perspectives of people with intellectual disability on community re-entry. These perspectives are often overlooked in policy and practice developments in the field of corrections. Yet without understanding this group, the field is unable to address their particular needs.

OHS Regulation for a Changing World of Work

This volume assesses the legacy of the Robens Report, the intellectual foundation of modern OHS law and practice in Australia and many other countries, following the Report’s 30th anniversary. The authors confront the challenges facing OHS regulators and stakeholders in a new and different world dominated by service industries and globalisation rather than manufacturing industries and protection. They explore new models of OHS regulation that take account of gaps and deficiencies in the current arrangements. The authors bring international expertise from the United Kingdom, New Zealand and Scandinavia as well as Australia. They focus on the kinds of regulatory strategies, including both OHS law and enforcement policy, that are most likely to produce good OHS outcomes in this changing world of work. Particular topics examined are: The type, mix, content and coverage of OHS standards, Systematic OHS management and the development of organisational capability, Strategies for effective worker participation and representation, Models for achieving small business compliance, Regulatory responses to changes in work organisation, Responsive enforcement and adapted inspection, and Restorative justice.

How can principals enhance teacher job satisfaction and work commitment?

Teachers leave the teaching profession at different stages throughout their careers. When mid-career teachers leave the profession, there is a potential loss of experienced, quality staff. Increasingly principals have the responsibility for recruiting and keeping quality staff, which translates to responsibility for arresting the attrition rate. This paper reports on an ongoing study that investigates how school leadership may affect teacher job satisfaction in order to understand how principals can enhance teacher work commitment. This paper uses the domains of leadership identified in Education Queensland’s Leadership Matters Framework (2008) to compare school leaders’ and teachers’ perceptions about mid-career teachers’ leaving the profession. Five current principals and five ex-teachers participated in semi-structured, qualitative, individual interviews about which leadership practices impact on teacher work commitment. The ideas identified by each cohort were coded through a content analysis. The five domains of leadership (i.e., personal, relational, intellectual, organisational and educational leadership) provided an analytical framework. Both participant groups indicated relational leadership practices as the strongest influence on teacher work commitment. The relational skills, such as valuing staff, being approachable, being consistent with staff interactions, having good interpersonal skills and developing staff strengths, were noted to have specific impacts on teachers’ work commitment. There were significant differences between the groups, with the ex-teachers rating the personal leadership practices as the second most important practice that can influence teacher work commitment. In contrast, the principals felt that the organisational and education leadership practices were of next importance for teacher work commitment. The findings have implications for principal leadership professional learning. Improving relational skills may help school leaders to increase teacher work. Teacher attrition is a serious concern to many education jurisdictions and by understanding reasons for decline in commitment, jurisdictions can redress the negative impact of leadership practices and keep teachers committed and in the profession. However, further research needs to incorporate more participants through a quantitative study to validate connections with the qualitative findings presented in this current study.

Playful interactions for people with intellectual disabilities

For people with intellectual disabilities, there are significant barriers to inclusion in socially cooperative endeavors. This paper investigates the effectiveness of Stomp, a tangible user interface (TUI) designed to provide new participatory experiences for people with intellectual disability. Results from an observational study reveal the extent to which the Stomp system supports social and physical interaction. The tangible, spatial, and embodied qualities of Stomp result in an experience that does not rely on the acquisition of specific competencies before interaction and engagement can occur.

Rove n Rave™ development : a partnership between the university and the disability service provider to build a social website for people with an intellectual disability

Rove n Rave ™ is a website designed and created for, and with, people with an intellectual disability. Its aim is to provide them with a user-friendly online platform where they can share opinions and experiences, and where they can find reviews which will help them to choose a place to visit themselves. During the development process, input on design requirements was gathered from a group of people with an intellectual disability and the disability service provider. This group then tested the product and provided further feedback on improving the website. It was found that the choice of wording, icons, pictures, colours and some functions significantly affected the users' ability to understand the content of the website. This demonstrated that a partnership between the developer and the user is essential when designing and delivering products or services for people with an intellectual disability.

Inventing life: Intellectual property and the new biology

In 2009, the National Research Council of the National Academies released a report on A New Biology for the 21st Century. The council preferred the term ‘New Biology’ to capture the convergence and integration of the various disciplines of biology. The National Research Council stressed: ‘The essence of the New Biology, as defined by the committee, is integration—re-integration of the many sub-disciplines of biology, and the integration into biology of physicists, chemists, computer scientists, engineers, and mathematicians to create a research community with the capacity to tackle a broad range of scientific and societal problems.’ They define the ‘New Biology’ as ‘integrating life science research with physical science, engineering, computational science, and mathematics’. The National Research Council reflected: 'Biology is at a point of inflection. Years of research have generated detailed information about the components of the complex systems that characterize life––genes, cells, organisms, ecosystems––and this knowledge has begun to fuse into greater understanding of how all those components work together as systems. Powerful tools are allowing biologists to probe complex systems in ever greater detail, from molecular events in individual cells to global biogeochemical cycles. Integration within biology and increasingly fruitful collaboration with physical, earth, and computational scientists, mathematicians, and engineers are making it possible to predict and control the activities of biological systems in ever greater detail.' The National Research Council contended that the New Biology could address a number of pressing challenges. First, it stressed that the New Biology could ‘generate food plants to adapt and grow sustainably in changing environments’. Second, the New Biology could ‘understand and sustain ecosystem function and biodiversity in the face of rapid change’. Third, the New Biology could ‘expand sustainable alternatives to fossil fuels’. Moreover, it was hoped that the New Biology could lead to a better understanding of individual health: ‘The New Biology can accelerate fundamental understanding of the systems that underlie health and the development of the tools and technologies that will in turn lead to more efficient approaches to developing therapeutics and enabling individualized, predictive medicine.’ Biological research has certainly been changing direction in response to changing societal problems. Over the last decade, increasing awareness of the impacts of climate change and dwindling supplies of fossil fuels can be seen to have generated investment in fields such as biofuels, climate-ready crops and storage of agricultural genetic resources. In considering biotechnology’s role in the twenty-first century, biological future-predictor Carlson’s firm Biodesic states: ‘The problems the world faces today – ecosystem responses to global warming, geriatric care in the developed world or infectious diseases in the developing world, the efficient production of more goods using less energy and fewer raw materials – all depend on understanding and then applying biology as a technology.’ This collection considers the roles of intellectual property law in regulating emerging technologies in the biological sciences. Stephen Hilgartner comments that patent law plays a significant part in social negotiations about the shape of emerging technological systems or artefacts: 'Emerging technology – especially in such hotbeds of change as the life sciences, information technology, biomedicine, and nanotechnology – became a site of contention where competing groups pursued incompatible normative visions. Indeed, as people recognized that questions about the shape of technological systems were nothing less than questions about the future shape of societies, science and technology achieved central significance in contemporary democracies. In this context, states face ongoing difficulties trying to mediate these tensions and establish mechanisms for addressing problems of representation and participation in the sociopolitical process that shapes emerging technology.' The introduction to the collection will provide a thumbnail, comparative overview of recent developments in intellectual property and biotechnology – as a foundation to the collection. Section I of this introduction considers recent developments in United States patent law, policy and practice with respect to biotechnology – in particular, highlighting the Myriad Genetics dispute and the decision of the Supreme Court of the United States in Bilski v. Kappos. Section II considers the cross-currents in Canadian jurisprudence in intellectual property and biotechnology. Section III surveys developments in the European Union – and the interpretation of the European Biotechnology Directive. Section IV focuses upon Australia and New Zealand, and considers the policy responses to the controversy of Genetic Technologies Limited’s patents in respect of non-coding DNA and genomic mapping. Section V outlines the parts of the collection and the contents of the chapters.

Environmental technologies, intellectual property and climate change (2013) edited by Abbe Brown

Abbe Brown from the University of Aberdeen, Scotland, is one of the leading international researchers on intellectual property and climate change. She is an intellectual dynamo. Her work brings together a mastery of intellectual property, with a strong interest in innovation theory and practice, and an engagement with public policy issues surrounding human rights, competition policy, and access to knowledge. Abbe Brown has shown a particular aptitude for tackling big ideas and wicked global problems, with intelligence, gusto, insight, and formidable wisdom.

Improving adherence physical activity with a smartphone application based on adults with intellectual disabilities (APPCOID)

Background People with intellectual disabilities (ID) have lower levels of physical activity and quality of life and they have a lot of barriers to face when taking part in physical activity. Other problems are the poor adherence to physical activity such people have so this study is designed to improve adherence to physical activity for people with intellectual disabilities with the assistance of an application for smartphones. The aim of the study will be to improve physical activity and physical condition after multimodal intervention and to analyse the promotion of adherence to physical activity through a multimodal intervention and an app intervention (mHealth) in people with ID. Methods A two-stage study will be conducted. In stage 1 a multimodal intervention will take place will be done with physical activity and educational advice over eight weeks, two days a week. Data will be measured after and before the intervention. In stage 2 a randomized controlled trial will be conducted. In the intervention group we will install an application to a smartphone; this application will be a reminder to do a physical activity and they have to select whether they have or haven’t done a physical activity every day. This application will be installed for 18 weeks. Data will be measured after and before the application is installed in two groups. We will measure results 10 weeks later when the two groups don’t have the reminder. The principal outcome used to measure the adherence to physical activity will be the International Physical Activity Questionnaire; secondary outcomes will be a fun-fitness test and self-report survey about quality of life, self-efficacy and social support. Samples will be randomized by sealed envelope in two groups, with approximately 20 subjects in each group. It’s important to know that the therapist will be blinded and won’t know the subjects of each group. Discussion Offering people with ID a multimodal intervention and tool to increase the adherence to a physical activity may increase the levels of physical activity and quality of life. Such a scheme, if beneficial, could be implemented successfully within public health sense. Trial registration ClinicalTrials.gov Identifier: NCT01915381.

Gene network effects on brain microstructure and intellectual performance identified in 472 twins

A major challenge in neuroscience is finding which genes affect brain integrity, connectivity, and intellectual function. Discovering influential genes holds vast promise for neuroscience, but typical genome-wide searches assess approximately one million genetic variants one-by-one, leading to intractable false positive rates, even with vast samples of subjects. Even more intractable is the question of which genes interact and how they work together to affect brain connectivity. Here, we report a novel approach that discovers which genes contribute to brain wiring and fiber integrity at all pairs of points in a brain scan. We studied genetic correlations between thousands of points in human brain images from 472 twins and their nontwin siblings (mean age: 23.7 2.1 SD years; 193 male/279 female).Wecombined clustering with genome-wide scanning to find brain systems withcommongenetic determination.Wethen filtered the image in a new way to boost power to find causal genes. Using network analysis, we found a network of genes that affect brain wiring in healthy young adults. Our new strategy makes it computationally more tractable to discover genes that affect brain integrity. The gene network showed small-world and scale-free topologies, suggesting efficiency in genetic interactions and resilience to network disruption. Genetic variants at hubs of the network influence intellectual performance by modulating associations between performance intelligence quotient and the integrity of major white matter tracts, such as the callosal genu and splenium, cingulum, optic radiations, and the superior longitudinal fasciculus.

Intellectual property and emerging technologies: The new biology

This unique and comprehensive collection investigates the challenges posed to intellectual property by recent paradigm shifts in biology. It explores the legal ramifications of emerging technologies, such as genomics, synthetic biology, stem cell research, nanotechnology, and biodiscovery. Extensive contributions examine recent controversial court decisions in patent law – such as Bilski v. Kappos, and the litigation over Myriad’s patents in respect of BRCA1 and BRCA2 – while other papers explore sui generis fields, such as access to genetic resources, plant breeders' rights, and traditional knowledge. The collection considers the potential and the risks of the new biology for global challenges – such as access to health-care, the protection of the environment and biodiversity, climate change, and food security. It also considers Big Science projects – such as biobanks, the 1000 Genomes Project, and the Doomsday Vault. The inter-disciplinary research brings together the work of scholars from Australia, Canada, Europe, the UK and the US and involves not only legal analysis of case law and policy developments, but also historical, comparative, sociological, and ethical methodologies. Intellectual Property and Emerging Technologies will appeal to policy-makers, legal practitioners, business managers, inventors, scientists and researchers.