搜索结果：Narrative inquiry in bioethics

A death by medical assistance in dying (MAiD) is often equated with a good death or a death with dignity, yet how MAiD-bereaved family members in Canada conceptualize the relationship between dignity and MAiD is currently unknown. Using a critical narrative inquiry approach, this article explores how family members with complex MAiD experiences constructed the concept of dignity in their bereavement stories. Dignity is conceived of as a thick, culturally relative concept with descriptive and evaluative meanings. Twelve family members from three of Canada's provinces (Alberta, British Columbia, and Ontario) completed narrative interviews about their experiences with complex MAiD bereavement.The interview transcripts are presented as short stories that portray how participants talk about dignity in relation to MAiD. These stories were analyzed from a critical narrative analysis approach that examined how institutional discourses are weaved into everyday stories about personal experience. The analysis identified three dignity narratives in participants' stories: the Dignified MAiD Narrative, the Traumatic MAiD Narrative, and the Unjust MAiD Narrative. The Dignified MAiD Narrative may provide solace to family members who agreed with their loved one's decision to choose MAiD; however, this narrative may simultaneously create moral tensions by setting unrealistic expectations for family members. The Traumatic and Unjust MAiD Narratives provide counter perspectives that challenge the notion that MAiD unequivocally leaves a legacy of a dignified, good death.

While several frameworks including the harm principle exist for navigating cases involving parental declination of medically recommended treatment for their children, cases such as the one presented here may leave clinicians feeling without adequate guidance. Specifically, criteria including imminence, severity and scope of harm, and the balance of potential risks and benefits may not always lend themselves to clear answers. In such scenarios, it may be helpful to readjust the ways in which we utilize these frameworks and consider moving beyond them. This may include relinquishing more narrow definitions of imminence and harm, broadening perspectives, and incorporating additional context including patient narrative as part of the ethical analysis. Such expansion will necessitate careful awareness of the potential for unjust or inequitable implementation.

Pregnant people experience moral judgment in healthcare settings that may be coded into clinical documentation. Stigmatizing language in medical records transmits bias between clinicians, potentially exacerbating disparities in maternal morbidity and mortality. We examined obstetrical records from 100 randomly selected patients who received prenatal and delivery care in an academic hospital system. Qualitative analysis sought to identify linguistic features conveying negative attitudes or moral judgment, revealing themes of epistemic injustice: (1) discrediting patient testimony as incompetent, unreliable, and hysterical; (2) unnecessary details that are objectifying, stigmatizing, or unprofessional; and (3) judgments of maternal fitness, where women are labeled "bad mothers" by emphasizing neglectful, selfish, and debauched characteristics. We conclude by advocating for further validation of our findings, revisiting medical education paradigms, and supporting the development of natural language processing (NLP) technologies to detect and intercept stigma.

Drawing on the analogy of lenses, this commentary examines two themes in first-person narratives of neurodivergence. The first, situatedness, explores how contexts-such as geography, culture, policy, and built environments-shape the neurodivergent experience. The second, blind spots, reveals how unexamined assumptions and biases, like the 'mind-blindness' of assuming everyone shares a mainstream perspective, are sustained. Together, these themes underscore the need for a more reflexive and dialogue-driven bioethics, one attuned to the specific contexts of lived experiences.

The narratives in this issue powerfully illuminate the lived experiences of neurodiverse individuals, particularly the long-term effects of labels and mislabels. Authors describe being called "lazy," "robotic," or "broken," as well as misperceptions of being "gifted" or a "child prodigy." These mis-labels often deepened feelings of isolation and fueled masking, camouflaging, or cocooning to navigate daily life. Several contributors highlight the transformative role of social media, especially TikTok, in fostering recognition, diagnosis, and community, offering both relief and validation while also raising concerns about misinformation. A central theme is the liberating clarity of adult diagnosis, reframing identity with pride and self-acceptance: "autism is not a bad word: it is beautiful, joyous, intense, and empowering." Collectively, these stories underscore the power of narrative to challenge ableism, expose systemic failures, and affirm the motto "nothing about us without us," reminding readers of the need to listen, learn, and support authentic inclusion.

At the turn of the twentieth century in New York City, nearly one-fifth of the school population was absent each day. A one-month experiment employing an experienced pediatric nurse in four schools proved so successful that it led to the hiring of more school nurses and a significant decrease in absenteeism. Other large cities soon adopted this model, eventually leading to the widespread implementation of school nursing. Today, despite its positive impact, school nursing faces modern challenges such as insufficient resources, diverse health needs, and ethical dilemmas. This symposium includes 13 personal narratives from school nurses that highlight their advocacy, frustrations, successes, and hardships. The symposium also includes four commentaries written by experts in virtue ethics, pediatric infectious disease, challenges in school nursing, character education, school leadership, and parenting, including parenting children with medically complex needs.

Schools play a vital role in communities by supporting the health, well-being, and development of children. This commentary explores the perspective of school nurses, who are frequently the sole medical providers responsible for the health of hundreds to thousands of children across multiple schools. They play a critical role in identifying medical and social issues, dealing with pushback when enforcing health protocols, and providing life-saving care under challenging conditions. Examples of their work include managing chronic conditions like asthma and diabetes, conducting contact tracing during the COVID-19 pandemic, and navigating legal and ethical dilemmas. The narratives in this issue of NIB, written by school nurses, cover several important themes. The authors discuss the challenges they face while maintaining health and safety amid limited resources, the impact of understaffing, and the importance of following the guidance of their professional code of ethics. The integration of school-based health centers (SBHCs) can provide a significant benefit to school nurses and the school community, by improving access to routine and acute care, particularly for families with limited resources.

Baby J is a 10-month-old infant who presented at birth with bilateral opacification of the cornea and elevated eye pressure. She was diagnosed with a severe form of glaucoma due to a genetic mutation. Her condition can be managed with surgery and daily medications. However, studies on her specific condition report poor outcomes and frequent post-operative complications. Despite receiving the first-line surgeries, Baby J's pressure remained difficult to control, and her visual prognosis remained uncertain. The parents, who are both blind due to genetic causes, no longer wished to pursue surgical treatment due to their own adverse experiences, and the potential harm of pursuing surgery. Without further intervention, the visual pathways will fail to develop, and Baby J will become blind permanently. The physician, on the other hand, felt pursuing further surgery was a risk worth taking for the chance at achieving a better future for Baby J. This paper discusses Baby J's case and argues for the safeguarding of parental autonomy following a comprehensive analysis of the case details through the lens of prominent ethical frameworks including the Harm Principle, the Best Interest Standard, and Constrained Parental Autonomy.

This commentary discusses the complexities of neurodivergence and the struggles faced by neuro-divergent individuals and their families. Reflecting on narratives from the journal Narrative Inquiry in Bioethics, I examine the challenges of understanding, acceptance, and advocating for people who are neurodiverse within a neurotypical society. I address such issues as misdiagnosis, lack of diagnosis, and the harmful effects of masking behaviors. I also touch on controversial treatments like Applied Behavior Analysis (ABA), noting its acceptance by many professionals who work with autistic people, but also its criticisms from members of the autism community. I stress the importance of embracing neurodiversity for the health and resilience of society and argue that diversity in nature and human cognition promotes adaptation and survival. Lastly, I highlight the need to remove barriers to healthcare and therapy, support responsible research, encourage continuing education for professionals, and foster neurodiverse relationships. By honoring and protecting diversity, we can strengthen our communities and improve the human experience for everyone.

This commentary shares my experiences of overcoming bias and negativity to lead an active, fulfilling, and meaningful life as someone with Down syndrome. With my parents' input and support, I dealt with various issues and challenges posed by societal misconceptions and outdated ideas. This commentary is enriched by narratives written by 12 parents of children with Down syndrome. Many of the authors have faced discrimination from healthcare professionals, educators, and policymakers. The stories discuss bias, stereotypes, negativity, and outdated ideas and information, showing the need for better training of healthcare and other professionals about disabilities, and the importance of inclusive policies and practices.Despite legislative advances, discrimination persists. For the authors and me, family and community support have played a crucial role in providing meaningful experiences and overcoming barriers, from early education to career development. By engaging in advocacy and support groups, parents can share resources, raise awareness, and foster hope to overcome discrimination and create new opportunities for their children.

This commentary explores a complex issue in modern medicine, focusing on the experience of people like Lucas Warren, the first Gerber Baby with Down syndrome, along with the children of the authors in this issue of Narrative Inquiry in Bioethics (NIB). The commentary highlights a paradox: medical advancements have greatly improved opportunities for well-being and quality of life, but they have also sparked a "eugenic impulse," referring to the idea of improving society by eliminating disabilities. While prenatal testing and treatments for Down syndrome have helped improve lives, they have also led to fewer births of people with Down syndrome, thereby reducing the presence of these individuals in society. This results in the marginalization of such people, who are seen as less desirable in society due to their diagnoses. The NIB authors explore the ongoing discrimination and bias that their children and families encounter. The commentary stresses the importance of seeing children with Down syndrome as people first, not just as their diagnoses, and recognizes the deeply personal and emotional journeys of the parents as they have learned to advocate for their children's dignity and inclusion.

This commentary highlights three themes from the stories contained within this issue of Narrative Inquiry in Bioethics. First, we discuss differing perceptions of school nurses' roles and responsibilities. Administrators, parents, and nurses often have different understandings of nurses' roles. We explain why these differences may lead to confusion and conflict. Second, we describe the respective pressures that parents and school nurses often face. Doing so should help parents and nurses better understand one another's views. Third, we explore ways in which parents and nurses sometimes disagree over what is "best" for children. Drawing on work by John Moskop, we argue that resolving disagreement often requires identifying the factual, emotional, normative, and/or practical roots of conflict. As parents of children with medically complex needs, we consider each of these themes in that context. We conclude by affirming the contributors' claims that school nurses play a vital role in the care of children.

This symposium includes twelve personal narratives from contributors who identified their lived experiences as falling within the umbrella of neurodivergence, as well as four other stories that appear in the online supplement. Four commentaries on these narratives are also included, authored by scholars in anthropology, bioethics, psychiatric disability, and who have lived experience of neurodivergence or of parenting neurodivergent children. The goal of this symposium issue is to call attention to our neurodiverse world, i.e., the range of different ways that human minds and brains work.The stories and commentaries introduce vocabulary and themes relevant to neurodivergent experiences, highlighting experiences of difference, diagnostic journeys in childhood and adulthood, experiences of (in)visibility and masking neurodivergence, the role of labels, as well as the experiences of learning and growth. The commentaries highlight how some stories are absent, cautioning us that the world is far more neurodiverse than this (or likely any) collection of essays can represent.

This commentary discusses the relationship between neurodiversity and mental health across twelve narratives shared by people with lived experiences of neurodivergence, mainly autism and attention deficit hyperactivity disorder (ADHD). Many authors in this symposium describe the psychological distress they endure as the product of ableism against neurodivergent people, calling us to reflect upon the entangled nature of neurodevelopmental conditions and mental health conditions. Absent in this issue are stories of people whose sole or primary experience of neurodivergence is a mental health condition like bipolar or schizophrenia, and I reflect here on what such missing narratives could teach us about neurodiversity, mental health, and disability.

This commentary reflects on twelve narratives authored by parents of children with Down syndrome. While the narratives represent a diverse set of experiences, the commentary identifies some repeated narrative aims, unified under the goal of recognition. For example, multiple authors explicitly or implicitly seek recognition of their children beyond stereotypes while others hope to make ableist values and practices more visible to clinicians and other readers. Through their rich descriptions of parenting, the authors also show themselves to be in need of support both in terms of material and bureaucratic support to be able to provide their children with necessary resources but also support for their parental decision-making. In other words, the authors make the labor of parenting a disabled child recognizable, attributing the cause of much of the labor to ableist systems and beliefs. The commentary suggests that recognition-of children with Down syndrome as fully human and of parents as in need of support-is a valuable and necessary starting point for political action.

The thirteen narratives presented in this symposium reveal what school nurses already know: their work involves far more than routine care. These stories describe circumstances filled with ambiguity, pressure, and moral burden: situations in which rules or standard ethical principles do not fully capture what is at stake. This commentary reframes those dilemmas through a virtue-ethics and character-education lens, drawing on scholars such as Lickona, Arthur, Kristjánsson, Noddings, and Berkowitz. I suggest that thinking in terms of character-compassion, courage, practical wisdom, justice, humility-offers a more grounded way to understand how school nurses navigate difficult situations. I close with brief recommendations for school policy and professional development.

School nurses play critical roles in child and population health. This commentary examines their unique position as healthcare providers, advocates, and educational professionals. Through stories of their experiences, school nurses reveal the varied nature of their work, which expands beyond typical health care delivery and is deeply influenced by the structural inequities that impact many students. Their work is situated within the separate professional environment of education. This contributes to complex moral, ethical, legal challenges-which the authors navigate (often alone) with fewer resources and institutional supports than nurses in other settings. Despite the challenges, school nurses use their positionality as both outside and within the system to bridge the gaps between students, families, and broader systems. Their narratives center advocacy as a professional and ethical obligation that extends from advocating for students to policy and legal change. Their experiences highlight the need for greater professional support and legal clarity and provide insight into the ethical and legal landscape of school nursing and its critical role in promoting health.

This commentary discusses themes drawn from twelve narratives by parents of people with Down syndrome. While each parent described unique aspects of their children and of their family's experience, a common thread throughout was making room for the different ways in which their children experienced and navigated the world. They described their children's differences sometimes being honored and sometimes being devalued, and in their narratives consistently advocate for ways in which we can hold space for those differences. Healthcare institutions, schools, and family life are all sites where their children's lives are shaped by assumptions and values about how to see, interact with, and accommodate difference.

This Case Study describes a patient with oliguric kidney failure who denied his need for hemodialysis even when experiencing symptoms of volume overload. Although any adequate analysis of the case will address a hotly debated issue in clinical ethics, namely, whether denying a diagnosis or prognosis renders a patient incapable of medical decision-making, the focus of this article is elsewhere. Specifically, I raise the concern that no matter which answer we provide to the prior question, the circumstances in which it arises constitute a form of second-order injustice when patient disbelief is a result of justified distrust of medical providers.