Troubling Care - Critical Perspectives on Research and Practices Eds. Pat Armstrong and Susan Bradley Toronto,ON: Canadian Scholars Press, 2013.Reviewed by Brigitte KitchenGrowing old is often considered a problematic stage in the life cycle. The need for care is certainly not entirely age dependent. None of us know when we may need to be cared for as the result of a debilitating accident or chronic illness; or when we may be called upon to provide care for someone close to us. Yet, it is likely that, as we age, we may experience health problems requiring support and care provisions that make us dependent on others. Having to be cared for is a shared human condition that some of us may not ever have to experience. The vast majority, or 90% of older persons in Canada, continue to live independently but many require, in varying degrees, some support with their personal care, nutrition, household chores and mobility. In 2012, about 8.1 million persons, 28% of the population, provided care to a family member or friend with a long-term health condition, disability or aging needs (The Daily, Sept. 10, 2013). Others, that is 352,205 persons, or 7.1% of person 65 and over, were living in special care facilities, relying on paid care from strangers (2011 Census (Statistic Canada http://www12.statcan.gc.ca/census-recensement/2011/as-sa/98-312-x/98-312-x2011003_4- eng.pdf ). Troubling Care penetrates deeply into the complexities and intricacies of care in Canada. The book offers a comprehensive exploration of the often neglected subject of the state and practices long-term residential care by a group of 14 authors of faculty and students from a variety of academic disciplines and different research interests. The authors were brought together in a year-long seminar at York University in the context of a seven-year and ongoing international research project, yet only one chapter of this book's chapters addresses long-term care outside Canada. The project was to determine why is happening to care in Canada is troubling (opening sentence of the introductory chapter of the book). And indeed, it is troubling. One researcher found that 70% of the residents in one large long-term care facility had a paid personal assistant that was hired by their families; a figure that sadly attests to the state of care (p.12).To help readers find their way through vastly different topics, the book is structured around four central themes presented in four sections. Each theme is preceded by a preface that provides some background of what is covered in the chapters and posits a number of relevant questions. It seems that this was done to bridge the divergence between academic disciplines and research interests and to make the connection between theoretical perspectives and the realities of practice. All contributors to the book recognized and accepted feminist political economy as the appropriate analytical framework on which to ground their work. Consequently, gender emerged as a key issue in a care system that has been characterized as being by women for women. Because they typically live longer then men, women represent the majority of informal and formal care givers in different care settings. Indeed, in most societies women traditionally assume primary responsibility for the care of children, the sick, persons with incapacities and the ageing. Troubled Care provides overwhelming evidence that the traditional gendered division of labour into separate spheres of work for women and men with marked differences in social validation and remuneration still prevails, regardless of the massive entry of women into the paid labour force and the shift of a great deal of care work from unpaid home care work to paid work in the market.Section I. Caring Theories sets out the direction of the various theorizations developed from the authors' research. Suzanne Day (chapt.1) addresses prevalent variations in the conceptualization and understanding of care. …
Many children, adolescents, teenagers, and young adults have caring responsibilities for parents and family members. These young carers and young adult carers are present in every country. Their responsibilities include domestic chores as well as intimate personal care and other forms of helping which are generally seen as the responsibility of adult professionals. First, this article provides an overview and critical perspective on young carers research. Research suggests that 2–8% of children and young people are carers and that the caring role has an impact on their education, health, wellbeing, social opportunities and employment prospects. Various countries have responded differently with regards to policy: some have well developed services and recognition in law whilst others are only just beginning to recognise the problem. Second, we discuss the issues and challenges for research and propose a new agenda for the development of policy, research rigour, more theoretical sophistication, and a greater awareness of the need for interdisciplinary and multiagency working. Furthermore, we call for participatory and action led research that can provide greater insights into the lived experiences of young people, their needs and how these can be met.
The Guide for the Care and Use of Laboratory Animals (the Guide) was first published in 1963 under the title Guide for Laboratory Animal Facilities and Care and was revised in 1965, 1968, 1972, 1978, and 1985. More than 400,000 copies have been distributed since it was first published, and it is widely accepted as a primary reference on animal care and use. In 1991, an ad hoc committee appointed by the Institute of Laboratory Animal Resources (ILAR) recommended that the Guide be revised. The Committee to Revise the Guide for the Care and Use of Laboratory Animals (the Committee) (see roster p 47) was appointed in 1993 by the National Research Council; its 15 members included research scientists, veterinarians, and nonscientists representing bioethics and the public's interest in animal welfare. The purpose of the Guide, as expressed in the charge to the Committee to Revise the Guide, is to assist institutions in caring for and using animals in ways judged to be scientifically, technically, and humanely appropriate. The Guide is also intended to assist investigators in fulfilling their obligation to plan and conduct animal experiments in accord with the highest scientific, humane, and ethical principles. The recommendations are based on published data, scientific principles, expert opinion, and experience with methods and practices that have proved to be consistent with high-quality, humane animal care and use. The introduction to the first Guide stated that ‘If the Guide is to serve usefully, it must be a living document, subject to change with changing conditions and new information.” This philosophy has been supported and implemented in subsequent Guides . The Guide is written for a diverse group of national and international institutions and organizations, and its guidelines are applied to many species of animals in varied settings, types of institutions, and uses (for example, facilities can range from a Biosafety Level 4 containment facility to a farm pasture). Guidelines and standards for a specific animal species, in a specific setting, in a specific institution, and for a specific use may be relatively easy to write. However, such narrowly focused guidelines or standards may be inappropriate, harmful, ineffective, or counterproductive when applied to other species or situations. Because guidelines for animal care and use with broad applicability are needed, the Guide often makes general recommendations, the details of which must be addressed locally with specific standard operating procedures, decisions by animal care personnel and users, and institutional animal care and use committee (IACUC) approvals. The Introduction and Chapter I of the Guide emphasize the important role of the IACUC in implementing the guidelines and identifies its authority, responsibility, and discretion in this role. The ’85 Guide ( NRC 1985 ) has been a good and useful document and did not need to be completely rewritten. The Committee's goals were to (1) update the document to make the ’96 Guide current in compliance areas, state-of-the-art techniques and equipment, and science; and (2) use performance standards rather than engineering standards whenever appropriate. Since 1961, the process of developing the Guide has been independent of governmental influence. There has been a concerted effort, first by the Animal Care Panel and later by the National Academy of Sciences (NAS), to appoint unbiased, objective, balanced, expert committees. Each committee has been charged with the task of formulating appropriate guidelines, taking into consideration such critical factors as species of animals, research uses of animals, settings in which animals are used, necessary resources, and ethical considerations. This process has been very effective and has served the scientific community and animals used in research well. Much of the information in earlier guidelines was based on experience, professional judgment, and arbitrary decisions rather than objective peer-reviewed data. To some extent this is still true. After the first Guide, each revised edition has been based on preceding versions and expanded and updated as appropriate based on factors improving research quality and animal well-being. Some aspects of recent Guides have changed very little from earlier editions. Previous Guides were excellent documents for their times, have served us well, and are tributes to the leadership and vision of early writers. The care and use of animals evoke strong emotions and opinions. It is unrealistic to expect that everyone will agree with every aspect of the Guide . No person or committee could write a document that is universally acceptable. Committees are used so that different ideas and approaches can be presented, discussed, and resolved. The Guide is a consensus document resulting from the discussions and decisions of a committee composed of individuals with differing ideas, perspectives, and approaches. The ’96 Guide Committee did not deliberate in a vacuum. We received extensive input from the general public, animal welfare advocates, and the scientific community through public hearings, other oral comments, and several hundred written comments. We relied on scientific literature (assisted by the bibliographic search services of the Animal Welfare Information Center) in our deliberations. We solicited information from experts on selected topics. Unfortunately, in many areas of the Guide, objective peer-reviewed data to substantiate specific practices may be lacking, contradictory, or ambiguous. Available data may not be applicable to the diverse settings covered by the Guide . For example, while some data is available on a given topic involving very specific circumstances applicable only to a very limited set of research settings, its application to general guidelines for all research settings could be problematic. The Committee used carefully chosen wording when making recommendations in such areas, and empowered the IACUC to use performance standards to interpret and adapt recommendations to specific settings. In updating the guidelines the Committee spent considerable effort to add explanatory material including references to assist the reader in understanding the rationale behind recommendations thereby making it easier to apply them in specific settings. Three documents affect the conduct of animal care and use: the Guide, the Animal Welfare Regulations or AWRs (9 CFR 1-3), and the Public Health Service Policy on Humane Care and Use of Laboratory Animals or PHS Policy ( PHS 1986 ). The Guide predates the Animal Welfare Act (AWA) and the PHS Policy . The first Guide was published in 1963; the first AWA regulations were released in 1966; and the first National Institutes of Health (later PHS) policy was issued in 1971. The AWA (implemented by the U.S. Department of Agriculture or USDA) and PHS Policy (implemented by the National Institutes of Health, Office for Protection from Research Risks or OPRR) are regulations, written by government officials. The NAS uses a ‘peer” process allowing the scientific community considerable input into animal care and use and self-governance via the Guide . The scientific community, through this process, has been encouraged and enabled to move torward to provide contemporary guidelines for animal care and use. Prior to the 1985 edition, there was much disparity between the Guide, the AWRs, and the PHS Policy . Prior Guides were more comprehensive, and the recommendations were more extensive and thorough than previous AWRs. However, the AWRs based on the 1985 AWA are similar to the ’85 Guide recommendations. The 1986 PHS Policy was expanded and provided more details than previous ones. This interrelationship and congruence of the Guide, the AWRs, and the PHS Policy caused a dilemma for the ’96 Guide Committee since any variance from federal regulation and policy would be considered to be noncompliant. The Committee considered 2 factors in dealing with this issue. We felt obligated to society, science, and animals to update and improve the previous guidelines where possible. The ’85 Guide and the AWRs were based on the state-of-the-art practices and science of the early 80s. Ten to 15 years have now elapsed. When the scientific community, represented by the Guide Committee, was aware of new information or ways to improve animal care and use, it was our obligation to address it rather than ignore it. Since the Committee's goal was to write contemporary guidelines, we did not feel limited by outdated information or restricted by existing regulations. The Guide is not intended to be an ancillary set of specifications for the USDA. The Guide has broader and more universal use than just by AWA and OPRR regulated institutions. In the United States, there are perhaps hundreds of users and potential users not covered by the AWRs or funded by the Public Health Service. In addition, the Guide has been used as a reference in other countries. In recent years, there has been much discussion about engineering versus performance standards. Engineering standards are prescriptive, design and program oriented, and do not specify goals or outcomes. They do not allow for professional judgment or modification in the event that acceptable alternative methods are available or unusual circumstances arise. They constitute a ‘one-size-fits-all” approach. Conversely, performance standards are outcome oriented. Performance standards define outcomes and provide criteria for assessing the outcomes but do not limit the methods by which the outcomes can be achieved. This performance approach is desirable because many variables (such as the species and previous history of the animals, facilities, expertise of personnel, and research goals) often make the engineering approach impractical or unwarranted. Animal care and use have been moving toward the performance-based approach for years. Examples include assessment of effectiveness of sanitation; assessment of air quality and heating, ventilation, and air-conditioning effectiveness; and veterinary care (e.g., animal health surveillance and surgery). In the past decade, the performance-based concept has gained momentum. There is more on animal care and use from an and making research more animal and We are moving from standards and of and to a which some in standards and on animal and conditions the of the The ’96 Guide is a Guide . we it will be as a Guide in the from engineering to performance standards. to with farm animals in research and has been an for years. The has versus use. This has to the of 2 of guidelines, the Guide for the Care and Use of Laboratory Animals and the Guide for the Care and Use of Animals in Research and Guide) . The Guide and the Guide have different The objective of the Guide for animals is to assist institutions in caring for and using animals in or and in ways judged to be scientifically, technically, and humanely appropriate. The Guide as an alternative to the Guide and intended to serve institutions and research as a primary reference on the care and use of the animal species in the United in research and for of scientific and applicability of must be in or settings. It is to serve as an independent reference for the care and use of animals just as the National Institutes of Health Guide for the Care and Use of Laboratory Animals ( NRC 1985 ) has served users of animals in research and ( for a Guide ). It has been that the Guide and Guide be It would be to the 2 Guides since have some goals and but there would still need to be different and different recommendations for animals in different settings. The ’96 Guide to all animals, including farm animals, used in The ’96 is that farm animals used in research can be in a animal or on a their and for the the Guide for animals settings and farm settings. and care for farm animals used in research or not from in Animals used in or research may be in or or in or Some can be in farm settings, and some need conditions to on research uses of farm animals, the or and standards for their care and use be based on and for animal well-being. may decisions be locally by the of the of institutions are to provide of all research animals and that their and are Information on farm animals is in all the Guide rather than in a farm animal There was a effort to make that applied to farm animals to an Some are of farm animal and of the animals and general reference to not The ’96 Guide has been and rewritten. It is into an introduction and 4 on the of an animal care and use institutional and animal and veterinary and of institutional institutional animal care and use and are in each The introduction has been expanded and about use of farm animals, species, and The of animals has been expanded from to include all The more important and in through 4 are The title of Chapter has been changed to and institutional and institutional personnel or that be or addressed in a document the Guide that must have general The Guide the institutional to that IACUC members are to the revised Guide the to IACUC members by to appropriate resources, specific institutional is the conduct of an health and The role and of were updated and expanded to more contemporary and to the AWRs and PHS Policy . The 2 documents IACUC and The ’96 Guide is not in compliance with For example, the ’96 Guide that the public not be a animal The of IACUC in implementing the Guide is of the (such as animal species and Much is focused on and recommendations are that apply to and of There is a broader range of that be considered in and of such as and are Examples of of have been expanded to include of animal Guidelines on and have been all are and the is not to be important objective of the Committee when was to make that the IACUC has and for and of use, and humane of animals its and animal care personnel are given discretion in to in to institutional and IACUC in Chapter the Committee considered it important to that have to and to their in their The Guide that new information may and are the must be as our of The IACUC is now charged with a for and of involving the care and use of animals the Previous Guides provided about this important issue. with the that health and must be of the institutional animal care and use this topic has been and The and for institutional and in are The recommendations the new document Health and in the Care of Research Animals in Guidelines are more on and for The reference to animal of previous Guides has been It was that in the not be based on the or of animal There is more on of the and the rather than such broad The of Chapter 2 has been that of The have been or expanded into on and much of the material from the ’85 Guide has been The of the more information on the general factors that be considered when to and care for of and are and decisions are the of the the and the The of the and be of the with of and It is that the in can be and that of the of the be necessary in to that the is appropriate. of acceptable primary the for reference to such as the of the and design are but that may be acceptable in some circumstances and that is of only its the health or of the such as and are and it is that may different It is that consideration be given to that provide for the of the on or and have been It was that and may be acceptable in many situations. and specific for types of are The on recommendations with the has not been changed with to However, the general philosophy has recommendations are as or The recommendations allow use of professional judgment and performance-based outcomes. The Guide on to and outcomes of decisions to use that from Guide recommendations. animal performance criteria for are performance specifications must be of the recommendations in the This is important for animals that in the or group is encouraged for group animal may be because of the each uses the For some species such as more may be in group situations. In addition, and not completely the of the The recommendations have been changed from to of the has been changed and is on the need for more for animals that the in the for have been for in the United and areas based on are on or in or into were in previous of the Guide with some in with the The change in recommendations which have been into and There are now of The Committee also that have specific that were not by the in the previous Guide . For example, in the ’85 Guide recommended for animals to were for or but were not for were also for the use of by of the for and into consideration the of and It was also that animals of species do not the as do For used farm animals specific recommendations are given for animals, that the previous Guide did not address this to in was since this is a used in situations. This of used, be by the IACUC and the Guide be to for recommended to for has also been This of be considered a of consideration of the and for The guidelines on and are the with 2 The recommended range for has been to the for many institutions in previous guidelines and the of the animals to adapt to recommendations have also been changed to a standard a acceptable for animals are The guidelines on have been expanded but still that air is a good general criteria and for more the of animals under different are such as with of the primary and with conditions are and recommendations for are also aspects of the have changed very information and references are provided on the of on The Guide that the for may not be applicable to animals and on have been and and other are are of the or an has been and and discussion of and and a on More on and is is The many criteria that must be considered for such the of animals, are is not only in of but in of and for In to are have been updated and some areas have been The guidelines on include use of as an alternative to use of or for and and the use of varied and of Some discussion and information are provided on for is in are for were changed very It is that used by may the of in some types of is when using since it may and the of The on has been and More criteria are provided with which to performance and outcomes of is as a of It be an acceptable of in such as farm animal or other settings but not in more animal settings. The and of may in different settings based on factors including the or guidelines on of change are not but of outcomes be Guidelines on the use of for are the concept of is can be with the appropriate of and of of the with from or more as a of of between is that may be in areas that similar of of in animal is not on and and care have been expanded but It is that animal care and use have a This information provided on and have been expanded to include the use of for on the of and information on the on veterinary care the of the 1985 Guide . However, a of in or have been to address new and The of an effective veterinary care program were expanded to include of or other and of animal well-being. were not as specific in the ’85 Guide, are not new They a to and that factors the health and of animals are for and veterinary This has been expanded to the of that and to The need for to all and regulations in animals is as it to and or and has been expanded and such as and to animals (such as and to that are not into existing are The of is when in In the and of the of animals is to that more may be in such as or In some it may be impractical or to each animal such as when animals are in settings. The of health surveillance is The is expanded to include the of personnel and animal and the of the The of and thorough assessment of outcomes is to that the are appropriate and that are The of techniques and that are appropriate for and farm animals are in than in the ’85 Guide, with an on the of outcomes to animal well-being. This has been expanded to emphasize the of to of in species and the appropriate for specific This has been expanded to include criteria to use in the for criteria for that that the is humane and the objective of the is achieved. This also the of understanding that some and can experience when with The of the ’96 Guide a that effective and design include input from personnel with animal facility design and and users of the is also provided desirable of including the use of on with which animals will have The ’96 Guide to include areas for and are The ’96 Guide that to will the of than to it be to It is recommended that and be or to by the of The ’96 Guide a for in where to or is It is also recommended that be to be from the a are not a as may be useful as a of for some are where be regulated because of or through the where is an important or there is a The of of is are in some areas and for some species (such as farm The specific for of was in of a that be for In the ’96 and and are in The ’85 Guide included a range of to This was and the ’96 Guide just to or of the recommendations stated in Chapter new are included in the ’96 Guide . It is recommended that the be for of and The ’96 Guide and to be for species in or It is that and in and are by to may include and is or and air are recommended for The ’96 Guide a more on the need for an alternative or in the event of be to and by equipment, and public address for and are In the ’96 Guide there is that the species and of the There are specific recommendations for and farm animal The ’96 Guide still of animal operating and The of is by but it is that this may be by between areas or by and appropriate and between there is more on the of and is in the and to and the was Since the Guide for the Care and Use of Laboratory Animals has served as a contemporary for animal care and use in the United The ’96 Guide is the The purpose of the Guide is to assist institutions in developing and animal care and use that are scientifically, technically, and humanely appropriate and to assist investigators in fulfilling their obligation to plan and conduct animal experiments in accord with the highest scientific, humane, and ethical principles. of the Guide was a process by an unbiased, objective, balanced, expert committee appointed by the National Academy of It has been by the scientific community as a of a self-governance rather than as a or policy document of the The Guide is written for a diverse group of users, and its guidelines are intended to be applied to many species of animals in varied settings, types of institutions, and The recommendations are based on published data, scientific principles, expert opinion, and experience with methods and practices that have proved to be consistent with high-quality, humane animal care and use. The Guide often makes general recommendations, the details of which must be addressed locally with specific standard operating procedures, decisions by animal care personnel and users, and institutional animal care and use committee (IACUC) approvals. The ’96 Guide has been updated with to state-of-the-art techniques and equipment, and consideration of new scientific data. It a from engineering to performance standards. This approach a on animal and or of appropriate assessment criteria for specific situations. The Guide research into methods of animal care and use. users, animal care and must use professional judgment in making specific decisions animal care and use. The Guide has been to include an introduction and 4 on the of an animal care and use institutional and animal and veterinary and
OBJECTIVES: Patient safety has received increased attention in recent years, but mostly with a focus on the epidemiology of errors and adverse events, rather than on practices that reduce such events. This project aimed to collect and critically review the existing evidence on practices relevant to improving patient safety. SEARCH STRATEGY AND SELECTION CRITERIA: Patient safety practices were defined as those that reduce the risk of adverse events related to exposure to medical care across a range of diagnoses or conditions. Potential patient safety practices were identified based on preliminary surveys of the literature and expert consultation. This process resulted in the identification of 79 practices for review. The practices focused primarily on hospitalized patients, but some involved nursing home or ambulatory patients. Protocols specified the inclusion criteria for studies and the structure for evaluation of the evidence regarding each practice. Pertinent studies were identified using various bibliographic databases (e.g., MEDLINE, PsycINFO, ABI/INFORM, INSPEC), targeted searches of the Internet, and communication with relevant experts. DATA COLLECTION AND ANALYSIS: Included literature consisted of controlled observational studies, clinical trials and systematic reviews found in the peer-reviewed medical literature, relevant non-health care literature and "gray literature." For most practices, the project team required that the primary outcome consist of a clinical endpoint (i.e., some measure of morbidity or mortality) or a surrogate outcome with a clear connection to patient morbidity or mortality. This criterion was relaxed for some practices drawn from the non-health care literature. The evidence supporting each practice was summarized using a prospectively determined format. The project team then used a predefined consensus technique to rank the practices according to the strength of evidence presented in practice summaries. A separate ranking was developed for research priorities. MAIN RESULTS: Practices with the strongest supporting evidence are generally clinical interventions that decrease the risks associated with hospitalization, critical care, or surgery. Many patient safety practices drawn primarily from nonmedical fields (e.g., use of simulators, bar coding, computerized physician order entry, crew resource management) deserve additional research to elucidate their value in the health care environment. The following 11 practices were rated most highly in terms of strength of the evidence supporting more widespread implementation. Appropriate use of prophylaxis to prevent venous thromboembolism in patients at risk; Use of perioperative beta-blockers in appropriate patients to prevent perioperative morbidity and mortality; Use of maximum sterile barriers while placing central intravenous catheters to prevent infections; Appropriate use of antibiotic prophylaxis in surgical patients to prevent postoperative infections; Asking that patients recall and restate what they have been told during the informed consent process; Continuous aspiration of subglottic secretions (CASS) to prevent ventilator-associated pneumonia; Use of pressure relieving bedding materials to prevent pressure ulcers; Use of real-time ultrasound guidance during central line insertion to prevent complications; Patient self-management for warfarin (Coumadin) to achieve appropriate outpatient anticoagulation and prevent complications; Appropriate provision of nutrition, with a particular emphasis on early enteral nutrition in critically ill and surgical patients; and Use of antibiotic-impregnated central venous catheters to prevent catheter-related infections. CONCLUSIONS: An evidence-based approach can help identify practices that are likely to improve patient safety. Such practices target a diverse array of safety problems. Further research is needed to fill the substantial gaps in the evidentiary base, particularly with regard to the generalizability of patient safety practices heretofore tested only in limited settings and to promising practices drawn from industries outside of health care.
Experimental multisite studies are needed to test adoption interventions that promote use of evidence-based guidelines in critical care practice. A research model (see Fig. 2) based on Rogers' diffusion of innovation model provides a conceptual guide for selecting interventions to test in translational research studies. Studies should address the four major areas of innovation adoption: (1) characteristics of the guideline, (2) users of the guideline, (3) methods of communicating the guideline, and (4) the social system in which it is being adopted. It is imperative that researchers study which interventions are most effective in promoting use of critical care evidence-based practices by nurses and physicians and how the social system of critical care environments affects adoption of such practices. Without this empiric knowledge, health care systems have little guidance in how to most effectively promote adoption of scientific evidence to improve care of critically ill patients.
PART ONE: GROUNDINGS Introduction to Groundings - Peter Reason and Hilary Bradbury Living Inquiry - Patricia Gaya Wicks, Peter Reason and Hilary Bradbury Personal, Political and Philosophical Groundings of Action Research Practice Participatory Action Research as Practice - Marja Liisa Swantz Some Trends in the Praxis of Participatory Action Research - Md. Anisur Rahman Action Research and the Challenge of Scope - Bjorn Gustavsen, Agneta Hansson and Thoralf U Qvale Action Research at Work - Hilary Bradbury et al Creating the Future Following the Path from Lewin Continuing the Journey - Colleen Reid and Wendy Frisby Articulating the Dimensions of Feminist Participatory Research Towards Transformational Liberation - M Brinton Lykes and Amelia Mallona Participatory Action Research and Activist Praxis Critical Theory and Participatory Action Research - Stephen Kemmis Systems Thinking and Practice for Action Research - Ray Ison Social Construction and Research as Action - Kenneth J Gergen and Mary M Gergen Power and Knowledge - John Gaventa and Andrea Cornwall Appreciable Worlds and Inspired Inquiry - Danielle P Zandee and David L Cooperrider Ethics and Action Research - Mary Brydon Miller Deepening Our Commitment to Principles of Social Justice and Redefining Systems of Democratic Practice The Future of Universities - Morten Levin and Davydd Greenwood Action Research and the Transformation of Higher Education Action Research, Partnerships and Social Impacts - L David Brown and Rajesh Tandon The Institutional Collaboration of PRIA and IDR PART TWO: PRACTICES Introduction to Practices - Peter Reason and Hilary Bradbury Action Inquiry - William R Torbert and Steven S Taylor Interweaving Multiple Qualities of Attention for Timely Action Action Science - Victor J Friedman and Tim Rogers Linking Causal Theory and Meaning-Making in Action Research Clinical Inquiry/Research - Edgar H Schein The Practice of Appreciative Inquiry - James D Ludema and Ronald E Fry PRA, PLA and Pluralism - Robert Chambers Practice and Theory Action Learning - Mike Pedler and John Burgoyne The Jury Is Out - Tom Wakeford et al How Far Can Participatory Projects Go towards Reclaiming Democracy? Learning History - George Roth and Hilary Bradbury An Action Research Practice in Support of Actionable Learning Extending Epistemology within a Co-Operative Inquiry - John Heron and Peter Reason Action Research in Health Care - Ian Hughes Action Research on a Large Scale - Ann W Martin Issues and Practices Theorizing Audience, Products and Provocation - Michelle Fine and Maria Elena Torre Taking the Action Turn - Sonia Ospina et al Lessons from Bringing Participation to Qualitative Research PART THREE: EXEMPLARS Introduction to Exemplars - Hilary Bradbury and Peter Reason Varieties of Action Research Charismatic Inquiry in Concert - John Heron and Greg Lahood Action Research in the Realm of 'the between' Presentational Knowing - Jennifer Mullett Bridging Experience and Expression with Art, Poetry and Song Working with 'Not Knowing' amid Power Dynamics among Managers - Marianne Kristiansen and Jorgen Bloch-Poulsen From Fault-Finding and Exclusion towards Co-Learning and Inclusion Learning to Love Our Black Selves - Taj Johns Healing from Internalized Oppressions The Tapestry of Leadership - Lyle Yorks et al Lessons from Six Co-Operative Inquiry Groups of Social Justice Leaders The Workplace Stress and Aggression Project - Rita Kowalski, Lyle Yorks and Mariann Jelinek Ways of Knowing - Our Rosetta Stone for Practice Theatre in Participatory Action Research - Meghna Guhathakurta Experiences from Bangladesh Changing the Culture of Dependancy to Allow for Successful Outcomes in Participatory Research - Maria Teresa Castillo, Maria Dolores Viga de Alva and Federico Dickinson 14 Years of Experience in Yucatan, Mexico Health Promotion and Participatory Action Research - Lai Fong Chui The Significance of Participatory Praxis in Developing Participatory Health Intervention 'This Is so Democratic!!' Action Research and Policy Development in East Timor - Ernie Stringer 'No - You Don't Know How We Feel' - Gillian Chowns Collaborative Inquiry Using Children Facing the Life-Threatening Illness of a Parent IT and Action Sense-Making - Chris Dymek Making Sense of a New Technology PART FOUR: SKILLS Introduction to Skills - Peter Reason and Hilary Bradbury Negotiating the Challenges of Participatory Action Research - Jill Grant, Geoff Nelson and Terry Mitchell Relationships, Power, Participation, Change and Credibility Getting in, Getting on, Getting out - Kate Louise McArdle On Working with Second-Person Inquiry Groups Facilitation as Action Research in the Moment - Jenny Mackewn Muddling through - Geoff Mead Facing the Challenges of Managing a Large-Scale Action Research Project Insider Action Research - David Coghlan and A B (Rami) Shani The Dynamics of Developing New Capabilities Teaching Reflective Practice in the Action Science / Action Inquiry Tradition - Steven S Taylor, Jenny W Rudolph and Erica Gabrielle Foldy Key Stages, Concepts and Practices The Praxis of Educating Action Researchers - Morten Levin Finding Form in Writing for Action Research - Judi Marshall Concluding Reflections - Peter Reason and Hilary Bradbury Whither Action Research
Unit 1 Steps Zero, One, Two: Getting Started Chapter 1 Making the Case for Evidence-Based Practice and Cultivating a Spirit of Inquiry Chapter 2 Asking Compelling, Clinical Questions Chapter 3 Finding Relevant Evidence to Answer Clinical Questions Unit 1 Making EBP Real: A Success Story. Using Evidence-Based Practice to Reduce Catheter-Associated Urinary Tract Infections in a Long- Term Acute Care Facility Unit 2: Step Three: Critically Appraising Evidence Chapter 4 Critically Appraising Knowledge for Clinical Decision Making Chapter 5 Critically Appraising Quantitative Evidence for Clinical Decision Making Chapter 6 Critically Appraising Qualitative Evidence for Clinical Decision Making Unit 2 Making Ebp Real: A Success Story. Making EBP a Reality by Reducing Patient Falls Through Transdisciplinary Teamwork Unit 3: Steps Four and Five: Moving From Evidence to Sustainable Practice Change Chapter 7 Integration of Patient Preferences and Values and Clinician Expertise Into Evidence-Based Decision Making Chapter 8 Advancing Optimal Care With Rigorously Developed Clinical Practice Guidelines and Evidence-Based Recommendations Chapter 9 Implementing Evidence in Clinical Settings Chapter 10 The Role of Outcomes and Quality Improvement in Enhancing and Evaluating Practice Changes Chapter 11 Leadership Strategies and Evidence-Based Practice Competencies to Sustain a Culture and Environment That Supports Best Practice Unit 3 Making EBP Real: A Success Story. Improving Outcomes for Depressed Adolescents with the Brief Cognitive Behavioral COPE Intervention Delivered in 30-Minute Outpatient Visits Unit 4: Creating and Sustaining a Culture and Environment for Evidence-Based Practice Chapter 12 Innovation and Evidence: A Partnership in Advancing Best Practice and High Quality Care Chapter 13 Models to Guide Implementation and Sustainability of Evidence-Based Practice Chapter 14 Creating a Vision and Motivating a Change to Evidence-Based Practice in Individuals, Teams, and Organizations Chapter 15 Teaching Evidence-Based Practice in Academic Settings Chapter 16 Teaching Evidence-Based Practice in Clinical Settings Chapter 17 ARCC Evidence-Based Practice Mentors: The Key to Sustaining Evidence-Based Practice Unit 4 Making EBP Real: A Success Story. Mercy Heart Failure Pathway Unit 5: Step Six: Disseminating Evidence and Evidence-Based Practice Implementation Outcomes Chapter 18 Disseminating Evidence Through Publications, Presentations, Health Policy Briefs, and the Media Unit 5 Making EBP Real: A Success Story. Faculty Research Projects Receive Worldwide Coverage Unit 6: Next Steps: Generating External Evidence and Writing Successful Funding Proposals Chapter 19 Generating Evidence Through Quantitative Research Chapter 20 Generating Evidence Through Qualitative Research Chapter 21 Writing a Successful Grant Proposal to Fund Research and Evidence-Based Practice Implementation Projects Chapter 22 Ethical Considerations for Evidence Implementation and Evidence Generation Unit 6 Making EBP Real: Selected Excerpts From a Funded Grant Application. COPE/Healthy Lifestyles for Teens: A School-Based RCT Appendix A Templates for Asking Clinical Questions Appendix B Rapid Critical Appraisal Checklists Appendix C Evaluation and Synthesis Tables Templates for Critical Appraisal Appendix D Walking the Walk and Talking the Talk: An Appraisal Guide for Qualitative Evidence Appendix E Example of a Health Policy Brief Appendix F Example of a Press Release Appendix G An Example of a Successful Media Dissemination Effort: Patient-Directed Music Intervention to Reduce Anxiety and Sedative Exposure in Critically Ill Patients Receiving Mechanical Ventilatory Support Appendix H Approved Consent Form for a Study Appendix I System-Wide ARCC Evidence-Based Practice Mentor Role Description 587 Appendix J ARCC Timeline for an EBP Implementation Project Appendix K Sample Instruments to Evaluate Organizational Culture and Readiness for Integration of EBP, EBP Beliefs, and EBP Implementation in Clinical and Academic Settings Glossary Index
ChatGPT is an artificial intelligence (AI)-based conversational large language model (LLM). The potential applications of LLMs in health care education, research, and practice could be promising if the associated valid concerns are proactively examined and addressed. The current systematic review aimed to investigate the utility of ChatGPT in health care education, research, and practice and to highlight its potential limitations. Using the PRIMSA guidelines, a systematic search was conducted to retrieve English records in PubMed/MEDLINE and Google Scholar (published research or preprints) that examined ChatGPT in the context of health care education, research, or practice. A total of 60 records were eligible for inclusion. Benefits of ChatGPT were cited in 51/60 (85.0%) records and included: (1) improved scientific writing and enhancing research equity and versatility; (2) utility in health care research (efficient analysis of datasets, code generation, literature reviews, saving time to focus on experimental design, and drug discovery and development); (3) benefits in health care practice (streamlining the workflow, cost saving, documentation, personalized medicine, and improved health literacy); and (4) benefits in health care education including improved personalized learning and the focus on critical thinking and problem-based learning. Concerns regarding ChatGPT use were stated in 58/60 (96.7%) records including ethical, copyright, transparency, and legal issues, the risk of bias, plagiarism, lack of originality, inaccurate content with risk of hallucination, limited knowledge, incorrect citations, cybersecurity issues, and risk of infodemics. The promising applications of ChatGPT can induce paradigm shifts in health care education, research, and practice. However, the embrace of this AI chatbot should be conducted with extreme caution considering its potential limitations. As it currently stands, ChatGPT does not qualify to be listed as an author in scientific articles unless the ICMJE/COPE guidelines are revised or amended. An initiative involving all stakeholders in health care education, research, and practice is urgently needed. This will help to set a code of ethics to guide the responsible use of ChatGPT among other LLMs in health care and academia.
OBJECTIVE: This study was conducted to develop evidence-based clinical practice guidelines for nutrition support (ie, enteral and parenteral nutrition) in mechanically ventilated critically ill adults. OPTIONS: The following interventions were systematically reviewed for inclusion in the guidelines: enteral nutrition (EN) versus parenteral nutrition (PN), early versus late EN, dose of EN, composition of EN (protein, carbohydrates, lipids, immune-enhancing additives), strategies to optimize delivery of EN and minimize risks (ie, rate of advancement, checking residuals, use of bedside algorithms, motility agents, small bowel versus gastric feedings, elevation of the head of the bed, closed delivery systems, probiotics, bolus administration), enteral nutrition in combination with supplemental PN, use of PN versus standard care in patients with an intact gastrointestinal tract, dose of PN and composition of PN (protein, carbohydrates, IV lipids, additives, vitamins, trace elements, immune enhancing substances), and the use of intensive insulin therapy. OUTCOMES: The outcomes considered were mortality (intensive care unit [ICU], hospital, and long-term), length of stay (ICU and hospital), quality of life, and specific complications. EVIDENCE: We systematically searched MEDLINE and CINAHL (cumulative index to nursing and allied health), EMBASE, and the Cochrane Library for randomized controlled trials and meta-analyses of randomized controlled trials that evaluated any form of nutrition support in critically ill adults. We also searched reference lists and personal files, considering all articles published or unpublished available by August 2002. Each included study was critically appraised in duplicate using a standard scoring system. VALUES: For each intervention, we considered the validity of the randomized trials or meta-analyses, the effect size and its associated confidence intervals, the homogeneity of trial results, safety, feasibility, and the economic consequences. The context for discussion was mechanically ventilated patients in Canadian ICUs. BENEFITS, HARMS, AND COSTS: The major potential benefit from implementing these guidelines is improved clinical outcomes of critically ill patients (reduced mortality and ICU stay). Potential harms of implementing these guidelines include increased complications and costs related to the suggested interventions. SUMMARIES OF EVIDENCE AND RECOMMENDATIONS: When considering nutrition support in critically ill patients, we strongly recommend that EN be used in preference to PN. We recommend the use of a standard, polymeric enteral formula that is initiated within 24 to 48 hours after admission to ICU, that patients be cared for in the semirecumbent position, and that arginine-containing enteral products not be used. Strategies to optimize delivery of EN (starting at the target rate, use of a feeding protocol using a higher threshold of gastric residuals volumes, use of motility agents, and use of small bowel feeding) and minimize the risks of EN (elevation of the head of the bed) should be considered. Use of products with fish oils, borage oils, and antioxidants should be considered for patients with acute respiratory distress syndrome. A glutamine-enriched formula should be considered for patients with severe burns and trauma. When initiating EN, we strongly recommend that PN not be used in combination with EN. When PN is used, we recommend that it be supplemented with glutamine, where available. Strategies that maximize the benefit and minimize the risks of PN (hypocaloric dose, withholding lipids, and the use of intensive insulin therapy to achieve tight glycemic control) should be considered. There are insufficient data to generate recommendations in the following areas: use of indirect calorimetry; optimal pH of EN; supplementation with trace elements, antioxidants, or fiber; optimal mix of fats and carbohydrates; use of closed feeding systems; continuous versus bolus feedings; use of probiotics; type of lipids; and mode of lipid delivery. VALIDATION: This guideline was peer-reviewed and endorsed by official representatives of the Canadian Critical Care Society, Canadian Critical Care Trials Group, Dietitians of Canada, Canadian Association of Critical Care Nurses, and the Canadian Society for Clinical Nutrition. SPONSORS: This guideline is a joint venture of the Canadian Critical Care Society, the Canadian Critical Trials Group, the Canadian Society for Clinical Nutrition, and Dietitians of Canada. The Canadian Critical Care Society and the Institute of Nutrition, Metabolism, and Diabetes of the Canadian Institutes of Health Research provided funding for development of this guideline.
Health behavior change is our greatest hope for reducing the burden of preventable disease and death around the world. Tobacco use, sedentary lifestyle, unhealthy diet, and alcohol use together account for almost one million deaths each year in the United States alone. Smoking prevalence in the United States has dropped by half since the first Surgeon General’s Report on Smoking and Health was published in 1964, but tobacco use still causes over 400,000 premature deaths each year. The World Health Organization has warned that the worldwide spread of the tobacco epidemic could claim one billion lives by the end of this century. The rising prevalence of childhood obesity could place the United States at risk of raising the first generation of children to live sicker and die younger than their parents, and the spreading epidemic of obesity among children and adults threatens staggering global health and economic tolls. The four leading behavioral risks factors and a great many others (for example, nonadherence to prescribed medical screening and prevention and disease management practices, risky sexual practices, drug use, family and gun violence, worksite and motor vehicle injuries) take disproportionate tolls in low-income and disadvantaged racial and ethnic populations, as well as in low-resource communities across the world. Addressing these behavioral risks and disparities, and the behaviors related to global health threats, such as flu pandemics, water shortages, increasingly harmful sun exposure, and the need to protect the health of the planet itself, will be critical to world health in the twenty-first century. In the past two decades since the publication of the first edition of Health Education and Health Behavior: Theory, Research, and Practice in 1990, there has been extraordinary growth in our knowledge about interventions needed to change health behaviors at both individual and population levels. This progress can be measured in the proliferation of science-based recommendations issued by authoritative evidence review panels, including the U.S. Clinical Preventive Services Task Force, the Centers for Disease Prevention and Control Task Force on Community Preventive Services, and the international Cochrane Collaboration. Today, there are evidence-based clinical practice guidelines for most major behavioral health risks, including tobacco use, unhealthy diet, sedentary lifestyle, risky drinking, and diabetes management. And there are parallel research-based guidelines for the health care system changes and policies needed to assure their delivery and use. New community practice guidelines offer additional evidence-based recommendations for a wide array of population-level school-, worksite-, and community-based programs and public policies to improve vaccination rates and physical activity levels for children and adults, improve diabetes self-management, reduce harmful sun exposure, reduce secondhand smoke exposure, prevent youth tobacco use and help adult smokers quit, reduce workplace and motor vehicle injuries, and curb drunk driving and family and gun violence.
Evidence-based education has become a central concept in science education, with meta-analyses often regarded as the gold standard for informing practice. This emphasis raises critical questions concerning the applicability, generalizability and transferability of research findings into classroom practice. It remains unclear both what kind of evidence education should be based on and whether science education research can provide the type of evidence required to guide decisions at different levels. This paper argues that theories play a crucial role in building bridges between research and practice. Drawing on literature from science education and the philosophy of science, we contrast the explanatory scope of meta-analyses with the predictive and integrative potential of theories, understood in a structuralist sense as systems of models with defined domains of applicability. We propose that science education research requires both fundamental and applied research, each contributing to theory development at different levels, ranging from local and context-specific models to more fundamental theoretical frameworks. Importantly, we argue that theories in science education should not
Unit 1: Steps Zero, One, Two: Getting Started Chapter 1: Making the Case for Evidence-Based Practice and Cultivating a Spirit of Inquiry Chapter 2: Thoroughly Revised! Asking Compelling, Clinical Questions Chapter 3: Thoroughly Revised! Finding Relevant Evidence to Answer Clinical Questions Unit 2: Step Three: Critically Appraising Evidence Chapter 4: Critically Appraising Knowledge for Clinical Decision Making Chapter 5: Thoroughly Revised! Critically Appraising Quantitative Evidence for Clinical Decision Making Chapter 6: Critically Appraising Qualitative Evidence for Clinical Decision Making Unit 3: Steps Four and Five: Moving from Evidence to Action Chapter 7: Patient Concerns, Choices, and Clinical Judgment in Evidence-Based Practice Chapter 8: Advancing Optimal Care with Clinical Practice Guidelines Chapter 9: NEW! Implementing Evidence in Clinical Settings Chapter 10: Thoroughly Revised! The Role of Outcomes in Evaluating Practice Change Unit 4: Creating and Sustaining a Culture for Evidence-Based Practice Chapter 11: NEW! Models to Guide Implementation of Evidence-Based Practice Chapter 12: Creating a Vision and Motivating a Change to Evidence-Based Practice in Individuals, Teams, and Organizations Chapter 13: Teaching Evidence-Based Practice in Academic Settings Chapter 14: NEW! Teaching Evidence-Based Practice in Clinical Settings Chapter 15: NEW! ARCC Evidence-Based Practice Mentors: The Key to Sustaining Evidence-Based Practice Unit 5: Step Six: Disseminating Evidence and Evidence-Based Practice Implementation Outcomes Chapter 16: Disseminating Evidence Through Publications, Presentations, Health Policy Briefs, and the Media Unit 6: Next Steps: Generating External Evidence Chapter 17: Generating Evidence Through Quantitative Research Chapter 18: Generating Evidence Through Qualitative Research Chapter 19: Writing a Successful Grant Proposal to Fund Research and Evidence-Based Practice Implementation Projects Chapter 20: NEW! Ethical Considerations for Evidence Implementation and Evidence Generation Appendices Appendix A: Case Examples: Evidence-Based Care and Outcomes in Adult Depression and in Critically Ill Children Appendix B: Template for Asking PICOT Questions Appendix C: Walking the Walk and Talking the Talk: An Appraisal Guide for Qualitative Evidence Appendix D: Rapid Critical Appraisal Checklists Appendix E: Templates for Evaluation and Synthesis Tables for Conducting an Evidence Review Appendix F: Example of a Slide Show for a 20-Minute Paper Presentation Appendix G: Example of a Health Policy Brief Appendix H: Example of a Press Release Appendix I: Example of a Successful Media Dissemination Effort: When Rocking Chairs in Nursing Homes Make the News Appendix J: Example of an Approved Consent Form for a Study Appendix K: A Data and Safety Monitoring Plan for an Intervention Study Appendix L: System-Wide ARCC Evidence-Based Practice Mentor Role Description Appendix M: Timeline for an EBP Implementation Project Appendix N: Instruments to Evaluate Organizational Culture and Readiness for System-Wide Integration of EBP, EBP Beliefs, and EBP Implementation and Psychometrics Glossary
Agile software development has been shaped by the interplay between academic research and industrial practice for over two decades, yet notable gaps persist between both domains. This paper focuses on three research-practice gaps: the theory gap, the time gap, and the transfer gap. To address these, the 2nd Agile Practice & Research Workshop was held at the International Conference on Agile Software Development (XP) 2026 in São Paulo, Brazil, bringing researchers and practitioners together to identify root causes and develop joint solutions. Building on two preceding sessions in which contributions of participants had been presented, participants engaged in a structured collaborative session, working in small groups on one of the three gaps and reflecting on possible causes and remedies. The organizers synthesized the results into four propositions for improving the research-practice intersection: (1) improving scientific communication, (2) aligning research more closely with emerging industrial needs, (3) creating stronger incentives for sustained collaboration, and (4) integrating educational approaches into research practice. From these, three calls for research were formula
PCA is widely used in health and care research to analyze complex HD datasets, such as patient health records, genetic data, and medical imaging. By reducing dimensionality, PCA helps identify key patterns and trends, which can aid in disease diagnosis, treatment optimization, and the discovery of new biomarkers. However, the primary goal of any dimensional reduction technique is to reduce the dimensionality in a data set while keeping the essential information and variability. There are a few ways to do this in practice, such as the Kaiser-Guttman criterion, Cattell's Scree Test, and the percent cumulative variance approach. Unfortunately, the results of these methods are entirely different. That means using inappropriate methods to find the optimal number of PCs retained in PCA may lead to misinterpreted and inaccurate results in PCA and PCA-related health and care research applications. This contradiction becomes even more pronounced in HD settings where n < p, making it even more critical to determine the best approach. Therefore, it is necessary to identify the issues of different techniques to select the optimal number of PCs retained in PCA. Kaiser-Guttman criterion retai
OBJECTIVE: To revise the "Clinical Practice Guidelines for the Sustained Use of Sedatives and Analgesics in the Critically Ill Adult" published in Critical Care Medicine in 2002. METHODS: The American College of Critical Care Medicine assembled a 20-person, multidisciplinary, multi-institutional task force with expertise in guideline development, pain, agitation and sedation, delirium management, and associated outcomes in adult critically ill patients. The task force, divided into four subcommittees, collaborated over 6 yr in person, via teleconferences, and via electronic communication. Subcommittees were responsible for developing relevant clinical questions, using the Grading of Recommendations Assessment, Development and Evaluation method (http://www.gradeworkinggroup.org) to review, evaluate, and summarize the literature, and to develop clinical statements (descriptive) and recommendations (actionable). With the help of a professional librarian and Refworks database software, they developed a Web-based electronic database of over 19,000 references extracted from eight clinical search engines, related to pain and analgesia, agitation and sedation, delirium, and related clinical outcomes in adult ICU patients. The group also used psychometric analyses to evaluate and compare pain, agitation/sedation, and delirium assessment tools. All task force members were allowed to review the literature supporting each statement and recommendation and provided feedback to the subcommittees. Group consensus was achieved for all statements and recommendations using the nominal group technique and the modified Delphi method, with anonymous voting by all task force members using E-Survey (http://www.esurvey.com). All voting was completed in December 2010. Relevant studies published after this date and prior to publication of these guidelines were referenced in the text. The quality of evidence for each statement and recommendation was ranked as high (A), moderate (B), or low/very low (C). The strength of recommendations was ranked as strong (1) or weak (2), and either in favor of (+) or against (-) an intervention. A strong recommendation (either for or against) indicated that the intervention's desirable effects either clearly outweighed its undesirable effects (risks, burdens, and costs) or it did not. For all strong recommendations, the phrase "We recommend …" is used throughout. A weak recommendation, either for or against an intervention, indicated that the trade-off between desirable and undesirable effects was less clear. For all weak recommendations, the phrase "We suggest …" is used throughout. In the absence of sufficient evidence, or when group consensus could not be achieved, no recommendation (0) was made. Consensus based on expert opinion was not used as a substitute for a lack of evidence. A consistent method for addressing potential conflict of interest was followed if task force members were coauthors of related research. The development of this guideline was independent of any industry funding. CONCLUSION: These guidelines provide a roadmap for developing integrated, evidence-based, and patient-centered protocols for preventing and treating pain, agitation, and delirium in critically ill patients.
Dementia is a mental illness that people live with all across the world. No one is immune. Nothing can predict its onset. The true story of dementia remains unknown globally, partly due to the denial of dementia symptoms and partly due to the social stigma attached to the disease. In recent years, dementia as a mental illness has received a lot of attention from the scientific community and healthcare providers. This paper presents a state of art survey of pervasive technology enabled care and support for people suffering from Alzheimers dementia. We identify three areas of pervasive technology support for dementia patients, focusing on care, wellness and active living. A critical analysis of existing research is presented here, exploring how pervasive computing, artificial intelligence (AI) and the Internet of Things (IoT) are already supporting and providing comfort to dementia patients, particularly those living alone in the community. The work discusses key challenges and limitations of technology-enabled support owing to reasons like lack of accessibility, availability, usability and affordability of technology, limited holistic care approach, and lack of education and informa
End-stage renal disease patients face a complicated sociomedical situation and rely on various forms of infrastructure for life-sustaining treatment. Disruption of these infrastructures during disasters poses a major threat to their lives. To improve patient access to dialysis treatment, there is a need to assess the potential threat to critical care facilities from hazardous events. In this study, we propose optimization models to solve critical care system resilience problems including patient and medical resource allocation. We use human mobility data in the context of Harris County (Texas) to assess patient access to critical care facilities, dialysis centers in this study, under the simulated hazard impacts, and we propose models for patient re-allocation and temporary medical facility placement to improve critical care system resilience in an equitable manner. The results show (1) the capability of the optimization model in efficient patient re-allocation to alleviate disrupted access to dialysis facilities; (2) the importance of large facilities in maintaining the functioning of the system. The critical care system, particularly the network of dialysis centers, is heavily re
Relationship-centred care (RCC) recognises that healthcare quality depends not only on outcomes, but on how voice, responsibility, and emotional labour are negotiated among patients, caregivers, and providers. As AI systems enter sensitive care contexts, they introduce a new participant into these negotiations. Drawing on empirical work in Advance Care Planning (ACP) and peer support, we argue that AI's primary impact in high-subjectivity domains is not optimisation but redistribution: it reorganises who speaks, who decides, and who bears moral responsibility. Across both settings, participants were less concerned with technical accuracy than with relational consequences: whether AI would appropriately represent their decision, reduce burden, or blur accountability, scaffold connection, or subtly displace it. We identify three relational dimensions: authority, temporality, and visibility, through which AI reshapes care relationships, and propose design provocations centred on relational legibility, bounded agency, responsibility traceability, and non-substitutive scaffolding.
OBJECTIVE: To develop clinical practice guidelines for the support of the patient and family in the adult, pediatric, or neonatal patient-centered ICU. PARTICIPANTS: A multidisciplinary task force of experts in critical care practice was convened from the membership of the American College of Critical Care Medicine (ACCM) and the Society of Critical Care Medicine (SCCM) to include representation from adult, pediatric, and neonatal intensive care units. EVIDENCE: The task force members reviewed the published literature. The Cochrane library, Cinahl, and MedLine were queried for articles published between 1980 and 2003. Studies were scored according to Cochrane methodology. Where evidence did not exist or was of a low level, consensus was derived from expert opinion. CONSENSUS PROCESS: The topic was divided into subheadings: decision making, family coping, staff stress related to family interactions, cultural support, spiritual/religious support, family visitation, family presence on rounds, family presence at resuscitation, family environment of care, and palliative care. Each section was led by one task force member. Each section draft was reviewed by the group and debated until consensus was achieved. The draft document was reviewed by a committee of the Board of Regents of the ACCM. After steering committee approval, the draft was approved by the SCCM Council and was again subjected to peer review by this journal. CONCLUSIONS: More than 300 related studies were reviewed. However, the level of evidence in most cases is at Cochrane level 4 or 5, indicating the need for further research. Forty-three recommendations are presented that include, but are not limited to, endorsement of a shared decision-making model, early and repeated care conferencing to reduce family stress and improve consistency in communication, honoring culturally appropriate requests for truth-telling and informed refusal, spiritual support, staff education and debriefing to minimize the impact of family interactions on staff health, family presence at both rounds and resuscitation, open flexible visitation, way-finding and family-friendly signage, and family support before, during, and after a death.
Demographic data collection is essential in education research, as demographic data allows researchers to better describe the participant population they study and to contextualize findings. However, current research practices for neurodiversity demographics often rely on prescriptive methods (e.g., requiring participants to report official diagnoses) rather than allowing participants to self-identify. This approach can: a) not allow participants to express their intersecting identities in ways that are authentic; and b) limit trustworthiness and reliability of the data and interpretation. In addition, inconsistent dissemination and representation of demographic data across studies hinder the accessibility and usability of this work. Through a literature review of neurodivergent student experiences with learning and performing STEM, we identified widespread discrepancies in how demographic information is collected and reported. This paper explores how neurodivergent identities can be more accurately and inclusively represented in education research. We present findings of a thematic analysis on the ways neurodivergent demographic data collection is done in the literature using data