An interdisciplinary perspective on the strengths and weaknesses of the International Dyslexia Association definition of dyslexia.

This commentary article describes the results of a Delphi Method discussion between an interdisciplinary team of state dyslexia policy implementers. The authors argue that the International Dyslexia Association (IDA) definition of dyslexia from 2001 skews toward the perspectives of the research community, inadvertently creating implementation challenges for school practice. The article describes how the authors reached this determination; why they believe Vaughn et al.'s (Annals of Dyslexia, 2024) proposed definition marks an improvement over the 2001 IDA definition; and the need for continued support in the dyslexia policy implementation process, including knowledge dissemination efforts and updates to other relevant policy documents. This collaboration between policymakers, educators, and researchers contributes to the special issue by considering how the definition of dyslexia is situated in policy and practice. In so doing, it addresses a longstanding gap in academic research on how policy implementers understand and use the IDA definition.

Family members' perspectives of hope when supporting a relative experiencing mental health problems.

Current research views hope as a process that plays a positive role in the recovery of individuals with mental health problems. However, little attention has been given to the role of hope in the lives of their families. We aimed to address that gap. We deployed a qualitative descriptive design and carried out individual interviews with nine family members who supported a relative with mental health problems. A cross-comparison of the data generated three major themes: understandings of hope; factors that diminish hope and factors that nurture hope. The participants viewed hope as a positive and productive feeling or attitude that was life-affirming, and empowering. They also associated it with behaviours and dispositions such as attentiveness and empathy and the possibility of a return to a more stable and 'normal' life. The participants experienced hope as initially eroded when their relative was first diagnosed and institutionalized. Hope was further diminished due to the poor communication practices of some mental health professionals and the stress of the caring role itself. On the other hand, hope was nurtured through the support of other family members, friends, neighbours and peers. Acquiring knowledge and understanding about the relative's state of mental health nurtured hope and enabled the participants to have a more meaningful role in their recovery process. Practices of self-care such as independent activities and counselling also strengthened hope and some mental health professionals played a positive role in supporting these. Most striking about the reports of many of the participants was their assertion of their abiding love for their relative. Their account of their ability to see beyond the illness of their relative was an insight that we did not find in other accounts of the experiences of family members. We highlight the need for family members to have timely access to relevant information about their relatives' illness. We conclude that hope is relational at its core because of the interplay of intrapersonal, interpersonal and social factors that diminish or nurture it over time. Specifically, we propose that friends, neighbours and peer support groups as key actors in nurturing the hope of both family members and their relatives.

A realist review of dyslexia pilot project research.

We conducted a realist review of state-authorized dyslexia pilot projects to understand how they have been implemented and evaluated, and the extent to which they adhere to best practice recommendations. We found that states have piloted broadly similar policy programs minimally consisting of professional development, universal screening, and instructional intervention. However, none of the pilot report documents we reviewed included explicit logic models or theories of action, which makes it difficult to understand the pilot projects and their results. Officially, most of the pilot project evaluations sought to establish the effectiveness of their programs. However, only two states used evaluation designs that are well-suited to making causal inferences about program effects, which complicates the interpretation of pilot project results. To make future pilot projects more useful to evidence-based policymaking, we make recommendations to improve their design, implementation, and evaluation.

Visitor restrictions during the COVID-19 pandemic: An ethical case study.

To prevent and reduce the transmission of the coronavirus to vulnerable populations, the World Health Organization recommended the restriction of visitors to nursing homes. It was recognised that such restrictions could have profound impact on residents and their families. Nonetheless, these measures were strictly imposed over a prolonged period in many countries; impeding families from remaining involved in their relatives' care and diluting the meaningful connections for residents with society. It is timely to explore the impact of public health measures on people living in nursing homes from an ethical perspective. In order to foreground the ethical dimensions of the implications of visitor restrictions in nursing homes, we compiled an ethical case that reflects some recent experiences of nursing homes residents and their families, in the Irish Republic. We describe a series of events encountered by a woman and her family during the first wave of the pandemic in 2020 and we deploy an ethical decision-making tool to guide and structure our analysis. Our case analysis draws attention to ethical principles that are relevant to explicating the ethical duties and obligations that arise in relation to the interests, well-being, and safety of residents and their families, as well as nursing home staff and the wider community during a pandemic. These include the right of autonomy, trust, minimising harm, and proportionality. We conclude that a number of different strategies should be adopted by nursing homes and relevant regulatory bodies. This includes honest, regular communication between the nursing home staff, the resident and their family. Central to communications is the resident's wishes, their current clinical status and the all-important wider public health obligations. National strategies include mass vaccination, the timely provision of guidance documents and interventions from regulatory bodies that are patient-centred, adaptable, and cost effective.

Ethical frameworks for quality improvement activities: an analysis of international practice.

PURPOSE: To examine international approaches to the ethical oversight and regulation of quality improvement and clinical audit in healthcare systems. DATA SOURCES: We searched grey literature including websites of national research and ethics regulatory bodies and health departments of selected countries. STUDY SELECTION: National guidance documents were included from six countries: Ireland, England, Australia, New Zealand, the United States of America and Canada. DATA EXTRACTION: Data were extracted from 19 documents using an a priori framework developed from the published literature. RESULTS: We organized data under five themes: ethical frameworks; guidance on ethical review; consent, vulnerable groups and personal health data. Quality improvement activity tended to be outside the scope of the ethics frameworks in most countries. Only New Zealand had integrated national ethics standards for both research and quality improvement. Across countries, there is consensus that this activity should not be automatically exempted from ethical review but requires proportionate review or organizational oversight for minimal risk projects. In the majority of countries, there is a lack of guidance on participant consent, use of personal health information and inclusion of vulnerable groups in routine quality improvement. CONCLUSION: Where countries fail to provide specific ethics frameworks for quality improvement, guidance is dispersed across several organizations which may lack legal certainty. Our review demonstrates a need for appropriate oversight and responsive infrastructure for quality improvement underpinned by ethical frameworks that build equivalence with research oversight. It outlines aspects of good practice, especially The New Zealand framework that integrates research and quality improvement ethics.

Covid-19: Ethical Challenges for Nurses.

The Covid-19 pandemic has highlighted many of the difficult ethical issues that health care professionals confront in caring for patients and families. The decisions such workers face on the front lines are fraught with uncertainty for all stakeholders. Our focus is on the implications for nurses, who are the largest global health care workforce but whose perspectives are not always fully considered. This essay discusses three overarching ethical issues that create a myriad of concerns and will likely affect nurses globally in unique ways: the safety of nurses, patients, colleagues, and families; the allocation of scarce resources; and the changing nature of nurses' relationships with patients and families. We urge policy-makers to ensure that nurses' voices and perspectives are integrated into both local and global decision-making so as to minimize the structural injustices many nurses have faced to date. Finally, we urge nurses to seek sources of support throughout this pandemic.

The Role, Education, and Experience of Health Care Assistants in End-of-Life Care in Long-Term Care: A Scoping Review.

The changing age profile of the human population globally means that the requirement for residential long-term care (LTC) for older adults is escalating, with an associated increase in deaths in these facilities. Health care assistants (HCAs), whose main role is provision of direct care to residents, comprise the largest staff cohort in residential care for older adults. The purpose of this scoping review was to explore three key areas related to HCAs: their role and responsibilities, end-of-life (EOL) education, and their views and experiences of caring for residents at EOL. The literature search included five databases and 32 studies were ultimately reviewed. Key issues were as follows: HCAs feel marginalized and undervalued, they need and desire EOL education, and resident deaths impact negatively on them. The changing care needs for older adults with complex comorbidities at EOL in LTC will place an increased onus on HCAs' skills, knowledge, and personal and professional development. [Journal of Gerontological Nursing, 46(1), 21-29.].

Ethical arguments for access to abortion services in the Republic of Ireland: recent developments in the public discourse.

The Republic of Ireland has some of the most restrictive abortion legislation in the world which grants to the 'unborn' an equal right to life to that of the pregnant woman. This article outlines recent developments in the public discourse on abortion in Ireland and explains the particular cultural and religious context that informs the ethical case for access to abortion services. Our perspective rests on respect for two very familiar moral principles - autonomy and justice - which are at the centre of social and democratic societies around the world. This article explains the context for the deployment of these concepts in order to support the claim that the current legislation and its operationalisation in clinical practice poses serious risks to the health, lives and well-being of pregnant women, tramples on their autonomy rights and requires of them a self-sacrifice that is unreasonable and unjust.

The Standard Account of Moral Distress and Why We Should Keep It.

In the last three decades, considerable theoretical and empirical research has been undertaken on the topic of moral distress among health professionals. Understood as a psychological and emotional response to the experience of moral wrongdoing, there is evidence to suggest that-if unaddressed-it contributes to staff demoralization, desensitization and burnout and, ultimately, to lower standards of patient safety and quality of care. However, more recently, the concept of moral distress has been subjected to important criticisms. Specifically, some authors argue that the standard account of moral distress elucidated by Jameton (AWHONN's Clin Issues Perinat Women's Health 4(4):542-551, 1984) does not refer to a discrete phenomenon and/or that it is not sufficiently broad and that this makes measuring its prevalence among health professionals, and other groups of workers, difficult if not impossible. In this paper, we defend the standard account of moral distress. We understand it as a concept that draws attention to the social, political and contextual determinants of moral agency and brings the emotional landscape of the moral realm to the fore. Given the increasing pressure on health professionals worldwide to meet efficiency, financial and corporate targets and reported adverse effects of these for the quality and safety of patient care, we believe that further empirical research that deploys the standard account moral distress is timely and important.

Addressing ethical concerns arising in nursing and midwifery students' reflective assignments.

BACKGROUND: Written reflections on practice are frequently requirements of nursing curricula. They are widely accepted as necessary for improving critical thinking and problem-solving skills. Faculty, are expected to review reflections and provide feedback that helps professional development and facilitates good practice. It is less clear what the actions of nurse educators should be when ethical infractions are revealed in the narratives. OBJECTIVES: We had two aims: 1) To combine insights from a literature review of empirical and theoretical research related to responding to ethical issues revealed in student reflections with our experiences reviewing the reflections of undergraduate nursing and midwifery students, and 2) to construct and analyze a hybrid case from these insights in order to develop guidelines for nurse educators. RESEARCH DESIGN: A literature review was conducted using CINAHL, MEDLINE, PsycINFO, SocINDEX and ERIC databases and pertinent key words. A hybrid case was constructed of commonly encountered ethical issues using insights from the literature review and the authors' experiences. The case was analyzed by combining Beauchamp and Childress' principlist approach with Campbell and McCarthy's ethical decision-making tool (Table 1). Participants and Research Context: No human participants Findings: A gap in the literature exists related to addressing ethical issues revealed in student practice reflections. However, a combination of insights from the literature and the authors' experiences facilitated the development of a hybrid case. Subsequent case analysis facilitated the development of a series of guidelines that can be utilized to address a range of issues commonly emerging in the reflections of nursing students during practice experiences. DISCUSSION: A number of recommendations and guidelines are provided to enable the safeguarding of students and staff and support them in practicing ethically. CONCLUSION: Structured ethical analysis of a constructed hybrid reflection of commonly revealed ethical issues was useful in developing guidelines for educators.

Challenges in implementing an advance care planning programme in long-term care.

BACKGROUND: A high prevalence of cognitive impairment and frailty complicates the feasibility of advance care planning in the long-term-care population. Research aim: To identify challenges in implementing the 'Let Me Decide' advance care planning programme in long-term-care. RESEARCH DESIGN: This feasibility study had two phases: (1) staff education on advance care planning and (2) structured advance care planning by staff with residents and families. Participants and research context: long-term-care residents in two nursing homes and one community hospital. Ethical considerations: The local research ethics committee granted ethical approval. FINDINGS: Following implementation, over 50% of all residents had completed some form of end-of-life care plan. Of the 70 residents who died in the post-implementation period, 14% had no care plan, 10% (with capacity) completed an advance care directive and lacking such capacity, 76% had an end-of-life care plan completed for them by the medical team, following discussions with the resident (if able) and family. The considerable logistical challenge of releasing staff for training triggered development of an e-learning programme to facilitate training. DISCUSSION: The challenges encountered were largely concerned with preserving resident's autonomy, avoiding harm and suboptimal or crisis decision-making, and ensuring residents were treated fairly through optimisation of finite resources. CONCLUSIONS: Although it may be too late for many long-term-care residents to complete their own advance care directive, the ' Let Me Decide' programme includes a feasible and acceptable option for structured end-of-life care planning for residents with variable capacity to complete an advance care directive, involving discussion with the resident (to the extent they were able) and their family. While end-of-life care planning was time-consuming to deliver, nursing staff were willing to overcome this and take ownership of the programme, once the benefits in improved communication and enhanced peace of mind among all parties involved became apparent in practice.

[Decision-making processes in nursing and activities at the end of life in intensive care­An international comparative study]. / Dialogisches Realisieren und Reorientieren--Pflegerische Entscheidungsfindungsprozesse und Aktivitäten am Lebensende auf der Intensivstation im internationalen Vergleich.

BACKGROUND: Intensive care units (ICUs) are traditionally settings that offer high technologically advanced treatment for those who are in critical situations due to an illness or accident. Questions regarding the withdrawal and withholding as well as the ending of life sustaining treatment are related to ethical dilemmas. Nurses' decision-making processes and nursing activities in different countries are scarcely studied. QUESTION: Which end-of-life decision-making processes and activities that are performed by nurses can be identified and described? AIM: The objective is the identification of a nursing terrain regarding decision-making and activities in patient end-of-life care on the intensive care unit. METHOD: Semi-structured interviews were conducted with 51 experienced nurses in university or hospital premises: 10 in Brazil, 9 in England, 10 in Germany, 10 in Ireland and 12 nurses in Palestine. The study used grounded theory to inform data collection and analysis. RESULTS: The finding of the study is the identification of a dynamic process in which activities with a focus on cure shift to activities with a focus on end-of-life care. The core category that emerged was 'negotiated reorienting': The shift of activities implies negotiations between nurses and physicians, relatives as well as with oneself. Moreover the process is characterized by a constant re-orientation that is induced by changing patient data and the realisation of the whole situation. Nurses' core practices are 'consensus seeking' and 'emotional holding' (sub-categories). CONCLUSIONS: In all countries a nursing terrain of activities in end-of-life care could be identified and described. However, it is unclear whether nursing activities connected to relatives of the patient are dominant in such a way that relations to dying patients and respect for their autonomy are put into the background. A field study could give answers to this question possible.

Negotiated reorienting: a grounded theory of nurses' end-of-life decision-making in the intensive care unit.

BACKGROUND: Intensive care units (ICUs) focus on treatment for those who are critically ill and interventions to prolong life. Ethical issues arise when decisions have to be made regarding the withdrawal and withholding of life-sustaining treatment and the shift to comfort and palliative care. These issues are particularly challenging for nurses when there are varying degrees of uncertainty regarding prognosis. Little is known about nurses' end-of-life (EoL) decision-making practice across cultures. OBJECTIVES: To understand nurses' EoL decision-making practices in ICUs in different cultural contexts. DESIGN: We collected and analysed qualitative data using Grounded Theory. SETTINGS: Interviews were conducted with experienced ICU nurses in university or hospital premises in five countries: Brazil, England, Germany, Ireland and Palestine. PARTICIPANTS: Semi-structured interviews were conducted with 51 nurses (10 in Brazil, 9 in England, 10 in Germany, 10 in Ireland and 12 nurses in Palestine). They were purposefully and theoretically selected to include nurses having a variety of characteristics and experiences concerning end-of-life (EoL) decision-making. METHODS: The study used grounded theory to inform data collection and analysis. Interviews were facilitated by using key questions. The comparative analysis of the data within and across data generated by the different research teams enabled researchers to develop a deeper understanding of EoL decision-making practices in the ICU. Ethical approval was granted in each of the participating countries and voluntary informed consent obtained from each participant. RESULTS: The core category that emerged was 'negotiated reorienting'. Whilst nurses do not make the 'ultimate' EoL decisions, they engage in two core practices: consensus seeking (involving coaxing, information cuing and voice enabling); and emotional holding (creating time-space and comfort giving). CONCLUSIONS: There was consensus regarding the core concept and core practices employed by nurses in the ICUs in the five countries. However, there were some discernible differences regarding the power dynamics in nurse-doctor relationships, particularly in relation to the cultural perspectives on death and dying and in the development of palliative care. The research suggests the need for culturally sensitive ethics education and bereavement support in different cultural contexts.

Moral distress: a review of the argument-based nursing ethics literature.

AIM: The aim of this review is to examine the ways in which the concept of moral distress has been delineated and deployed in the argument-based nursing ethics literature. It adds to what we already know about moral distress from reviews of the qualitative and quantitative research. DATA SOURCES: CINAHL, PubMed, Web of Knowledge, EMBASE, Academic Search Complete, PsycInfo, Philosophers' Index and Socindex. REVIEW METHODS: A total of 20 argument-based articles published between January 1984 and December 2013 were analysed. RESULTS: We found that like the empirical literature, most authors in this review draw on Jameton's original definition and describe moral distress in psychological-emotional-physiological terms. They also agree that moral distress is linked to the presence of some kind of constraint on nurses' moral agency, and that it is best understood as a two-staged process that can intensify over time. There is also consensus that moral distress has an important normative meaning, although different views concerning the normative meaning of moral distress are expressed. Finally, the authors generally agree that moral distress arises from a number of different sources and that it (mostly) affects negatively on nurses' personal and professional lives and, ultimately, harms patients. However, despite this consensus, many authors take issue with the way in which moral distress is conceptualized and operationalized. Moreover, while some worry that identifying nurses as a group of health professionals whose voices are ignored or marginalized might disempower nurses and encourage them to avoid their moral responsibilities, others take situations involving moral distress as indicative of more fundamental, structural inequities at the heart of contemporary healthcare provision. CONCLUSION: We conclude that research on moral distress in nursing is timely and important because it highlights the specifically moral labour of nurses. However, we suggest that significant concerns about the conceptual fuzziness and operationalization of moral distress also flag the need to proceed with caution.

A study of the situations, features, and coping mechanisms experienced by Irish psychiatric nurses experiencing moral distress.

PURPOSE: The purpose of this study was to investigate moral distress in Irish psychiatric nurses. DESIGN: A qualitative descriptive methodology was used. FINDINGS: The study confirmed the presence of moral distress and the situations that gave rise to moral distress within psychiatric nurses working in acute care settings. PRACTICE IMPLICATIONS: The findings indicate that while multidisciplinary teams appear to function well on the surface, situations that give rise to moral distress are not always acknowledged or dealt with effectively. Furthermore, unresolved moral conflict impacts upon the quality of clinical decision-making by not allowing open and transparent discussions that allow clinicians the opportunity to address their concerns adequately.

Moral instability: the upsides for nursing practice.

This article briefly outlines some of the key problems with the way in which the moral realm has traditionally been understood and analysed. I propose two alternative views of what is morally interesting and applicable to nursing practice and I indicate that instability has its upsides. I begin with a moral tale - a 'Good Samaritan' story - which raises fairly usual questions about the nature of morality but also the more philosophically fundamental question about the relationship between subjectivity and moral agency. I then consider this relationship from the perspectives of two twentieth century philosophers: Emmanuel Levinas and Michel Foucault. Levinas' basic point is that the experience of ethical subjectivity is made possible through others: the demand to respond to the existence of others is the basic social structure that precedes individual freedom. If Levinas posits intersubjectivity as a fundamental or primitive feature of the moral realm, Foucault poses an even more basic question: how have moral subjects and relations of obligation been constituted? The aim of ethical inquiry, for Foucault, is to describe the network of discourses, institutions, relations, and practices through which certain kinds of subjects are constituted and constitute themselves, e.g. as a kind of person who can act morally. Finally, I consider some recent research in philosophy of nursing which illustrates how Levinasian and/or Foucauldian perspectives can deepen understanding of nurses' moral practices, specifically, the work of Norwegian public health nurses, Canadian pediatric nurses, and Irish midwives. I suggest that in spite of the instability of morality in general and the particular ethical challenges that face nurses, there are grounds for hope and possible strategies for living in unstable times.