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"This volume provides timely, multidisciplinary insights into the ethical aspects of research that includes participants with cognitive disability and differences. These include conditions such as intellectual disability, autism, mild cognitive impairment (MCI), and psychiatric diagnoses." - Provided by publisher.
Research participants who have cognitive disabilities and differences may be considered a vulnerable population. At the same time, they should also be empowered to participate in research in order to foster the growth of knowledge and the improvement of practices. For research participants with cognitive disabilities or differences, participating in research that concerns them follows the Disability Rights Movement's call “Nothing About Us Without Us” and is a vital component of the principle of justice. However, cognitive disabilities and differences may pose challenges to ethical research, particularly with respect to the research ethics principle of autonomy, for a variety of reasons. Several alternative or modified strategies, for example when obtaining informed consent, have been used by researchers. This volume provides timely, multidisciplinary insights into the ethical aspects of research that includes participants with cognitive disability and differences. These include conditions such as intellectual disability, autism, mild cognitive impairment (MCI), and psychiatric diagnoses. The chapters in this volume describe situations where difficulties arise, explore strategies for empowerment and inclusion, drawing on both empirical and normative research to offer suggestions for research design, research ethics, and best practices that empower people with cognitive disabilities and differences to participate in research while respecting and managing potential coercion or undue influence. The book includes contributions from scholars in anthropology, sociology, ethics, child studies, health and rehabilitation sciences, philosophy, and law who address these issues in both clinical and social/behavioural research. The book will be valuable for anyone performing research involving these populations - from the fields of neuropsychology, neurology, psychiatry, and neuroscience.
Societies around the world are concerned about dementia and the other forms of cognitive impairment that affect many older adults. We now know that brain changes typically begin years before people show symptoms, which suggests a window of opportunity to prevent or delay the onset of these conditions. Emerging evidence that the prevalence of dementia is declining in high-income countries offers hope that public health interventions will be effective in preventing or delaying cognitive impairments. Until recently, the research and clinical communities have focused primarily on understanding and treating these conditions after they have developed. Thus, the evidence base on how to prevent or delay these conditions has been limited at best, despite the many claims of success made in popular media and advertising. Today, however, a growing body of prevention research is emerging. Preventing Cognitive Decline and Dementia: A Way Forward assesses the current state of knowledge on interventions to prevent cognitive decline and dementia, and informs future research in this area. This report provides recommendations of appropriate content for inclusion in public health messages from the National Institute on Aging.
This book portrays the origins, current status, and future course of the self-advocacy movement by persons with disabilities in the West.
First published Open Access under a Creative Commons license as What is Inclusive Research?, this title is now also available as part of the Bloomsbury Research Methods series. This book describes and defines inclusive research, outlining how to recognize it, understand it, do it, and know when it is done well. In doing so it addresses the areas of overlap and distinctiveness in relation to participatory, emancipatory, user-led and partnership research as well as exploring the various practices encompassed within each of these inclusive approaches. The author, Melanie Nind, focuses on how and why more inclusive approaches to research have evolved. She positions inclusive research within the key debates and shifts in policy, defines key ideas and terms, discusses the contested nature of inclusive research and illustrates a range of approaches using exemplars. The aim is to discuss the range of challenges involved and to examine the degree to which these challenges have so far been met.
Brain disordersâ€"neurological, psychiatric, and developmentalâ€"now affect at least 250 million people in the developing world, and this number is expected to rise as life expectancy increases. Yet public and private health systems in developing countries have paid relatively little attention to brain disorders. The negative attitudes, prejudice, and stigma that often surround many of these disorders have contributed to this neglect. Lacking proper diagnosis and treatment, millions of individual lives are lost to disability and death. Such conditions exact both personal and economic costs on families, communities, and nations. The report describes the causes and risk factors associated with brain disorders. It focuses on six representative brain disorders that are prevalent in developing countries: developmental disabilities, epilepsy, schizophrenia, bipolar disorder, depression, and stroke. The report makes detailed recommendations of ways to reduce the toll exacted by these six disorders. In broader strokes, the report also proposes six major strategies toward reducing the overall burden of brain disorders in the developing world.
This handbook is a ‘one-stop shop’ for current information, issues and challenges in the fields of research ethics and scientific integrity. It provides a comprehensive coverage of research and integrity issues, both within researchers’ ‘home’ discipline and in relation to similar concerns in other disciplines. The handbook covers common elements shared by disciplines and research professions, such as consent, privacy, data management, fraud, and plagiarism. The handbook also includes contributions and perspectives from academics from various disciplines, treating issues specific to their fields. Readers are able to quickly source the most comprehensive and up-to-date information, protagonists, issues and challenges in the field. Experienced researchers keen to assess their own perspectives, as well as novice researchers aiming to establish the field, will equally find the handbook of interest and practical benefit. It saves them a great deal of time in sourcing the disparate available material in these fields and it is the first ‘port of call’ for a wide range of researchers, research advisors, funding agencies and research reviewers.The most important feature is the handbook’s ability to provide practical advice and guidance to researchers in a wide range of disciplines and professions to help them ‘think through’ their approach to difficult questions related to the principles, values and standards they need to bring to their research practice.
In this thought-provoking book, Jan Walmsley and Kelley Johnson discuss participative approaches to research and provide an up-to-date account of inclusive practice with individuals with learning disabilities. Drawing on evidence from two major studies, they explain how lessons learnt from inclusive research in the learning disability field are applicable to others working with marginalized groups. The authors examine the origins and the process of inclusive research, describing: * how and why it takes place * who carries it out * who funds it * how it is designed * how it relates to policy and practice. They look at the challenges inherent in this work, such as balancing the voice of the researcher with that of disabled participants and clarifying roles within research projects, and explore how it can become more inclusive and empowering. Providing valuable information and advice to researchers, policy makers and students as well as other health and social care professionals, this book presents a comprehensive examination of participative research in social care.
The first international, cross-disciplinary book to explore and understand the lives of parents with intellectual disabilities, their children, and the systems and services they encounter Presents a unique, pan-disciplinary overview of this growing field of study Offers a human rights approach to disability and family life Informed by the newly adopted UN Convention on the Rights of Persons with Disabilities (2006) Provides comprehensive research-based knowledge from leading figures in the field of intellectual disability
Children and adults with profound and multiple learningdisabilities (PMLD) are among the most marginalised people insociety. They have some of the highest support needs and are mostreliant on services. This accessible text presents and promotescurrent best practice regarding interventions to meet the complexhealth needs of a person with profound & multiple learningdisabilities. Practical in focus, this text provides evidence-basedguidance on meeting the complex needs of a person with PMLD. The text presents a range of complex health needs that apractitioner may face, such as communication, nutrition, epilepsy,vision and mobility. Each practice-focused chapter provides cleardefinitions of the condition, with current evidence-basedbest-practice supporting the intervention. Written by a team of professionals who have wide experience andinterest in this subject area, this text will be invaluable for allthose working with, and caring for those with profound and multiplelearning disabilities.