IntroductionThe value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes.MethodsWe conducted a scoping review to summarize the available empirical literature on the experiences of families in the context of trisomy 13 and 18 (T13/18) with subsequent thematic analysis of the 17 included articles.FindingsThemes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time.InterpretationOur thematic analysis was guided by the moral experience framework conceived by Hunt (...) and Carnevale (2011) in association with the VOICE (Views On Interdisciplinary Childhood Ethics) collaborative research group.RelevanceThis article will be of interest and value to healthcare professionals and bioethicists who support families navigating the medically and ethically complex landscape of T13/18. (shrink)

BackgroundSerious ethical problems have been anecdotally identified in the care of children with osteogenesis imperfecta (OI), which may negatively impact their moral experiences, defined as their sense of fulfillment towards personal values and beliefs.Research aimsTo explore children’s actual and desired participation in discussions, decisions, and actions in an OI hospital setting and their community using art-making to facilitate their self-expression.Research designA focused ethnography was conducted using the moral experiences framework with data from key informant interviews; participant observations, semi-structured interviews, and (...) practice-based research (art-making) with 10 children with OI; and local documents.Participants and research contextThe study was conducted at a pediatric, orthopedic hospital.Ethical considerationsThis study was approved by McGill University Institutional Review Board.Findings/resultsChildren expressed desires to participate in their care, but sometimes lacked the necessary resources and encouragement from healthcare providers. Art-making facilitated children’s voice and participation in health-related discussions.ConclusionsHealthcare providers are recommended to consider the benefits of art-making and educational resources to reduce discrepancies between children’s actual and desired participation in care and promote positive moral experiences. (shrink)

Fabi and Goldberg raised important considerations regarding both research and funding priorities in the field of bioethics and, in particular, the field’s misalignment with social justice. W...

Ethics is often viewed as the elaboration of and compliance to norms, a.k.a. as the deductive model of ethics. This is well illustrated by the mainstream development of codes of ethics and ethics committees in the healthcare setting and beyond. Drawing upon a recent synthesis of pragmatist insights on the nature of ethics as well as contemporary scholarship on human flourishing, I explain how ethics is not primarily about the compliance of experience and agency to preset norms but about liberation (...) and empowerment within a process of existential meaning-making. This point is made in the context of two important tasks of ethics: (1) understanding moral problems and (2) providing guidance for solving such problems. (shrink)

Background:The management of challenging behaviours in inpatient with intellectual disability and/or autism spectrum disorders can lead to an escalation of control measures. In these complex situations where patients have an intellectual disability/autism spectrum disorder accompanied by a psychiatric comorbidity, the experiences of caregivers related to the crisis management have rarely been studied.Purpose:This study examined the moral experiences of caregivers related to challenging behaviours’ management and alternatives to control measures.Research design:Using Charles Taylor’s hermeneutic framework, a 2-month focused ethnography with a participatory (...) approach was used.Participants and research context:Sixteen caregivers were interviewed in a Canadian mental health setting for adults with intellectual disability/autism spectrum disorder and psychiatric comorbidity.Ethical considerations:The research was conducted in compliance with the Declaration of Helsinki and local Research Ethics Board approval. Written informed consent was collected systematically from participants.Findings:By accounting for caregivers’ moral experiences, this study sheds light on a neglected dimension of the care relationship: the vulnerability of the caregiver. We highlight the main barriers and facilitators to alternatives to control measures. First, a caregiver’s vulnerability was characterised by the overall impact of challenging behaviours and the moral distress associated with the use of control measures and exclusion mechanisms of intellectual disability/autism spectrum disorder patients. Second, a strong ambiguity between care and control measures and a lack of inclusive approaches were identified as the two main barriers to challenging behaviour management. Third, the involvement, both professional and personal, of caregivers was deemed necessary to implement alternatives to control measures.Discussion:A conflict of values opposes two conceptions of autonomy: a rational autonomy, which is counterproductive to the reduction of control measures, versus a relational autonomy based on shared vulnerability.Conclusion:The recognition of caregiver’s vulnerability is a benchmark to create alternative approaches, which defuse the logic of control and promote an ethics of care within which caregivers’ self-concern can be understood as fostering mutual respect. (shrink)

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral (...) dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships. (shrink)

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral (...) dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships. (shrink)

Healthcare user fees present an important barrier for accessing services for the poorest (indigents) in Burkina Faso and selective removal of fees has been incorporated in national healthcare planning. However, establishing fair, effective and sustainable mechanisms for the removal of user fees presents important challenges. A participatory action-research project was conducted in Ouargaye, Burkina Faso, to test mechanisms for identifying those who are indigents, and funding and implementing user fee removal. In this paper, we explore stakeholder perceptions of ethical considerations (...) relating to participation and partnership arising in the action-research. (shrink)

Moral constructions of suicide are deliberately avoided in contemporary suicidology, yet morality persists, little or imperfectly acknowledged, in its practices and in the policies, discourses, and instruments that it underpins. This study used narrative methodologies to examine the normative force of suicidology and its implications for persons who had engaged in an act of nonfatal suicidal behavior. I interviewed a convenience sample of twelve persons from two inner–urban community mental health centers who were receiving crisis and case management services after (...) a recent act of nonfatal suicidal behavior. Interviews focused on events leading up to and after participants’ suicidal behavior; the responses their suicidal behavior generated in others, including family, friends, and the health professionals caring for them; and cultural views of suicide more broadly. Analysis of these interviews revealed that, although participants’ narratives were broadly consistent with a number of recognizable, canonical story formats common to our cultural repertoire of stories of suicide, they also revealed important tensions, divisions, conflicts, and challenges to contemporary suicidological discourse and practice. Despite evidence to suggest that biomedical understandings of suicide provided some therapeutic benefit to participants, they did not address important social and moral dimensions of human life or explore their connection to suicidal behavior—aspects of the suicidal event that were critical to its causation and to its retelling and “resolution.” The results of this study provide important insights into the moral features of suicidal behavior, the moral and ethical implications of suicide research, and the limitations of moral and ethical discourse in suicidology. (shrink)

Background: Legislative changes are resulting in assisted death as an option for people at the end of life. Although nurses’ experiences and perspectives are underrepresented within broader ethical discourses about assisted death, there is a small but significant body of literature examining nurses’ experiences of caring for people who request this option. Aim: To synthesize what has been learned about nurses’ experiences of caring for patients who request assisted death and to highlight what is morally at stake for nurses who (...) undertake this type of care. Design: Qualitative meta-synthesis. Methods: Six databases were searched: CINAHL, Medline, EMBASE, Joanna Briggs Institute, PsycINFO, and Web of Science. The search was completed on 22 October 2014 and updated in February 2016. Of 879 articles identified from the database searches, 16 articles were deemed relevant based on inclusion criteria. Following quality appraisal, 14 studies were retained for analysis and synthesis. Results: The moral experience of the nurse is defined by a profound sense of responsibility, shaped by contextual forces that nurses navigate in everyday end-of-life care practice, and sustained by intra-team moral and emotional support. Discussion: The findings of this synthesis support the view that nurses are moral agents who are deeply invested in the moral integrity of end-of-life care involving assisted death. The findings further demonstrate that to fully appreciate the ethics of assisted death from a nursing standpoint, it is necessary to understand the broader constraints on nurses’ moral agency that operate in everyday end-of-life care. Ethical considerations: Research ethics board approval was not required for this synthesis of previously published literature. Conclusion: In order to understand how to enact ethical practice in the area of assisted death, the moral experiences of nurses should be investigated and foregrounded. (shrink)

While the ethical issues of education are well documented in the literature, the ethical issues of occupational therapy education are not. No studies have been conducted on the subject in Quebec. To fill this gap, we conducted a study and this article presents the results. Since the state of knowledge on the subject is limited, a qualitative approach was used. Eleven occupational therapist-teachers participated in semi-directed individual interviews to discuss the ethical issues raised by their teachings. Six units of meaning (...) emerge from the data: 1) equity among students: a challenge; 2) student and teacher health and well-being: a disturbing picture; 3) injustices within the teaching staff: the elephant in the room; 4) professional identity torn by role conflicts; 5) the presence of worrisome conflicts of interest; and 6) occupational balance: a myth more than a reality. The results are generally consistent with those documented in the literature. That said, one element that is poorly documented in the literature emerges, namely the presence of a hierarchical academic culture in which epistemic authority is held by professor-researchers to the detriment of other types of teachers and clinical settings. Thus, although the occupational therapy profession values occupational justice, university departments are dominated by an epistemic injustice which, in turn, creates occupational injustice, which from an occupational therapy perspective is a concern. Also, the university context is linked to a work overload that is not conducive to ethical action and reflective practice. (shrink)

In the context of academic research, a diversity of ethical issues, conditioned by the different roles of members within these institutions, arise. Previous studies on this topic addressed mainly the perceptions of researchers. However, to our knowledge, no studies have explored the transversal ethical issues from a wider spectrum, including other members of academic institutions as the research ethics board (REB) members, and the research ethics experts. The present study used a descriptive phenomenological approach to document the ethical issues experienced (...) by a heterogeneous group of Canadian researchers, REB members, and research ethics experts. Data collection involved socio-demographic questionnaires and individual semi-structured interviews. Following the triangulation of different perspectives (researchers, REB members and ethics experts), emerging ethical issues were synthesized in ten units of meaning: (1) research integrity, (2) conflicts of interest, (3) respect for research participants, (4) lack of supervision and power imbalances, (5) individualism and performance, (6) inadequate ethical guidance, (7) social injustices, (8) distributive injustices, (9) epistemic injustices, and (10) ethical distress. This study highlighted several problematic elements that can support the identification of future solutions to resolve transversal ethical issues in research that affect the heterogeneous members of the academic community. (shrink)

Nursing scholars have called for nursing approaches with children that ensure the promotion of their childhood, contesting dominant adult-based approaches that are adapted for practice with children. Although the nursing literature includes many important advances in the promotion of child-centered approaches, there are still significant gaps in fully recognizing the complexities of childhood within nursing. Within this paper, I (a) outline some key advances in nursing approaches with children, sometimes referred to as “Children's Nursing” (shifting away from “Pediatric Nursing” conceptions (...) that may be focused more on diseases than childhood); (b) highlight key gaps in current conceptions of Children's Nursing, namely the inadequate integration of work from the interdisciplinary field of Childhood Studies which challenges dominant age-based developmental models which discount children's voices and experiences as “immature”; and (c) propose a Childhood Ethics-based framework that bridges advances in Children's Nursing with those within Childhood Studies, which I refer to as the VOICE Children's Nursing Framework. The latter is rooted in the recognition of (a) children as active agents with capacities and interests in participating in discussions and decisions that affect them, and (b) best interests as the foundational basis for determining the nursing care required by a child which should be defined in an individualized manner, informed by a child's expressed aspirations and concerns. This Framework integrates biological, relational, and ethical dimensions of children's wellbeing and draws on hermeneutic approaches for eliciting and interpreting children's agential expressions, which involves continuous part/whole shifting to meticulously discern what is meaningful within a situation. The Framework is operationalized for clinical practice through the use of orienting questions, which is demonstrated through discussion of a clinical exemplar. The paper closes with proposed future directions for Children's Nursing development in practice, education, and research. (shrink)

Within his earliest contributions to the human sciences, Charles Taylor challenged dominant behavioral views by advancing a hermeneutical conception of human agency. For Taylor, persons continually...