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1.
Nurs Inq ; : e12646, 2024 Jun 05.
Artículo en Inglés | MEDLINE | ID: mdl-38838221

RESUMEN

Neuropalliative care developed to address the needs of patients living with life-limiting neurologic disease. One critical consideration is that disease-related changes to cognition, communication, and function challenge illness experiences and care practices. We conducted an ethnography to understand neuropalliative care as a phenomenon; how it was experienced, provided, conceptualized. Personhood served as our conceptual framework; with its long philosophical history and important place in nursing theory, we examined the extent to which it captured neuropalliative experiences and concerns. Personhood contextualized complex losses, aligning the impact of functional and relational changes. Cognition, communication, and functional alterations stretched conceptions of personhood, insinuating it can be relational, fluid, adaptive. Although normative conceptions of personhood guided research and decision-making, ethical considerations suggested personhood could be transformed, remade. We consider the implications of our findings through three themes. First, we examine how literature on illness experience fails to integrate the realities of people living with and dying from neurologic disease; we counter this by interrogating the concept of experience. Second, we turn to Ricoeur's work on recognition to illuminate relational conceptions of personhood to inform care practices. Finally, we reflect on how personhood can bridge the gap left by functional changes, enhance relational engagement, and promote dignity at the end of life.

2.
Can J Anaesth ; 70(7): 1202-1215, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-37160822

RESUMEN

PURPOSE: In North America, pediatric adenotonsillectomy (TA) is conducted as an ambulatory procedure, thus shifting the burden of postoperative care to parents. The purpose of this study was to describe this parental experience. METHODS: We conducted a prospective single-centre qualitative study, recruiting the families of children (n = 317) undergoing elective TA in 2018. Parents were invited to submit written comments to two open-ended questions. We coded the comments from 144 parents in a grounded theory analysis and report representative exemplars. Themes and subthemes for the problems encountered, and strategies employed by parents, were developed. We then coded and classified factors that helped/hindered parents and developed models of the experience. RESULTS: Some parents felt ill-prepared for the severity and duration of pain. Specific findings included a lack of strategies to manage pain at night, refusals, and night terrors. Parents identified the use of pain scales, pain diaries, and liaison with the research team as helpful supports at home. Inconsistent messaging was a barrier. The odynophagia associated with elixirs of acetaminophen and ibuprofen was a barrier to achieving analgesia. CONCLUSIONS: The findings from this qualitative analysis provide insight into the challenges faced by parents when caring for their children at home following TA; these challenges included difficulties managing physical needs and pain. The analysis suggests that educational content should be standardized and include the use of pain scales and diaries, and both pharmacologic and nonpharmacologic strategies. Development of support at home, including a practicable liaison with health care providers, seems to be warranted. STUDY REGISTRATION: ClinicalTrials.gov (NCT03378830); registered 20 December 2017.


RéSUMé: OBJECTIF: En Amérique du Nord, l'adéno-amygdalectomie pédiatrique est réalisée en intervention ambulatoire, transférant ainsi le fardeau des soins postopératoires aux parents. Le but de cette étude était de décrire cette expérience parentale. MéTHODE: Nous avons réalisé une étude qualitative prospective monocentrique, recrutant les familles d'enfants (n = 317) subissant une adéno-amygdalectomie non urgente en 2018. Les parents ont été invités à soumettre des commentaires écrits sur deux questions ouvertes. Nous avons codé les commentaires de 144 parents dans une analyse théorique ancrée et rapporté des exemples représentatifs. Des thèmes et sous-thèmes pour les problèmes rencontrés, ainsi que des stratégies employées par les parents, ont été développés. Nous avons ensuite codé et classé les facteurs qui aidaient / gênaient les parents et développé des modèles de l'expérience. RéSULTATS: Certains parents se sentaient mal préparés à la gravité et à la durée de la douleur. Les résultats spécifiques comprenaient un manque de stratégies pour gérer la douleur la nuit, les refus et les terreurs nocturnes. Les parents ont indiqué que l'utilisation d'échelles de douleur, de journaux de douleur et de liaison avec l'équipe de recherche étaient des soutiens utiles à la maison. Le manque d'uniformité des messages a constitué un obstacle. L'odynophagie associée aux élixirs d'acétaminophène et d'ibuprofène était un obstacle à l'analgésie. CONCLUSION: Les résultats de cette analyse qualitative donnent un aperçu des défis auxquels font face les parents lorsqu'ils et elles s'occupent de leurs enfants à la maison après une adéno-amygdalectomie; ces défis comprenaient des difficultés à gérer les besoins physiques et la douleur. L'analyse suggère que le contenu éducatif devrait être normalisé et inclure l'utilisation d'échelles et de journaux de douleur, ainsi que de stratégies pharmacologiques et non pharmacologiques. L'élaboration d'un soutien à domicile, y compris d'une communication fonctionnelle avec les prestataires de soins de santé, semble justifiée. ENREGISTREMENT DE L'éTUDE: ClinicalTrials.gov (NCT03378830); enregistrée le 20 décembre 2017.


Asunto(s)
Dolor Postoperatorio , Tonsilectomía , Niño , Humanos , Adenoidectomía , Dolor Postoperatorio/tratamiento farmacológico , Padres , Estudios Prospectivos , Adulto
3.
J Clin Nurs ; 32(11-12): 2773-2789, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-35676775

RESUMEN

BACKGROUND: A three-phase ethnography was conducted at a paediatric orthopaedic hospital exploring the actual and desired participation of children with Osteogenesis Imperfecta in discussions, decisions and actions in the hospital and community. Phase I and Phase II revealed how childhood ethics are understood and practiced in the hospital using artmaking to engage children in discussions about their health-related experiences. Children expressed frustration, anger and disappointment when their desired level of participation in care was not actualized due to forgone opportunities for engagement by clinicians or lack of child-oriented health resources. OBJECTIVES: The objective of this study (Phase III) was to specify how childhood ethics ought to be understood and practiced in the hospital by (1) convening hospital stakeholders in a collaborative setting to disseminate findings, identify ethical concerns and generate action steps; and (2) develop a preliminary ethical framework to optimise the participation of children with OI in health care. DESIGN: Focused ethnography reported using the SRQR checklist. METHODS: A focus group was conducted with 14 interdisciplinary hospital stakeholders. Data were analysed using qualitative, thematic analysis to understand primary ethical concerns and accompanying action steps. The findings were consolidated into a preliminary ethical framework and worksheet for clinicians. RESULTS: Four main factors impeding children's voices and desired participation were identified: legal and contextual factors; variations in clinicians' skills, practice and knowledge; difficulties incorporating alternative engagement methods into practice; and need for interprofessional collaboration. Five action steps were identified: Recognise, Elicit, Interpret, Act and Optimise. RELEVANCE TO CLINICAL PRACTICE: The focus group and creation of clinician resources were important steps towards addressing the ethical concerns of children with OI, such as marginalisation or exclusion in their OI care. This study better prepares us to disseminate our findings on a larger scale and create ethical frameworks and resources to improve how vulnerable children's voices are heard, understood and acted upon in healthcare settings.


Asunto(s)
Osteogénesis Imperfecta , Humanos , Niño , Investigación Cualitativa , Atención a la Salud , Hospitales , Emociones
4.
Qual Health Res ; 33(4): 334-344, 2023 03.
Artículo en Inglés | MEDLINE | ID: mdl-36745036

RESUMEN

Qualitative health research is ever growing in sophistication and complexity. While much has been written about many components (e.g. sampling and methods) of qualitative design, qualitative analysis remains an area still needing advanced reflection. Qualitative analysis often is the most daunting and intimidating component of the qualitative research endeavor for both teachers and learners alike. Working collaboratively with research trainees, our team has developed SAMMSA (Summary & Analysis coding, Micro themes, Meso themes, Syntheses, and Analysis), a 5-step analytic process committed to both clarity of process and rich 'quality' qualitative analysis. With roots in hermeneutics and ethnography, SAMMSA is attentive to data holism and guards against the data fragmentation common in some versions of thematic analysis. This article walks the reader through SAMMSA's 5 steps using research data from a variety of studies to demonstrate our process. We have used SAMMSA with multiple qualitative methodologies. We invite readers to tailor SAMMSA to their own work and let us know about their processes and results.


Asunto(s)
Antropología Cultural , Escritura , Humanos , Investigación Cualitativa , Antropología Cultural/métodos , Hermenéutica
5.
Healthc Manage Forum ; 36(3): 170-175, 2023 May.
Artículo en Inglés | MEDLINE | ID: mdl-36408883

RESUMEN

In Canada, Medical Assistance in Dying (MAiD) is legal for many Canadians based on several criteria, though minors who are deemed sufficiently capable to make medical decisions (i.e. mature minors) remain ineligible. In this article, we provide insight into recent philosophical and legal evidence related to MAiD for mature minors. We begin by providing an overview of literature pertaining to MAiD for mature minors in particular (including evidence from Belgium and the Netherlands), followed by a discussion on the lessons that can be learnt from Canada's MAiD implementation process (in general) and other forms of paediatric end-of-life care. As a whole, we aim to highlight some key takeaway messages for health leaders to consider as deliberations on MAiD for mature minors continue.


Asunto(s)
Suicidio Asistido , Cuidado Terminal , Humanos , Niño , Canadá , Menores , Asistencia Médica
6.
Pediatr Crit Care Med ; 23(3): e126-e135, 2022 03 01.
Artículo en Inglés | MEDLINE | ID: mdl-35013080

RESUMEN

OBJECTIVES: To describe the reasoning processes used by pediatric intensivists to make antibiotic-related decisions. DESIGN: Grounded theory qualitative study. SETTING: Three Canadian university-affiliated tertiary medical, surgical, and cardiac PICUs. PATIENTS: Twenty-one PICU physicians. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We conducted field observation during morning rounds followed by semistructured interviews with participants to examine the clinical reasoning behind antibiotic-related decisions (starting/stopping antibiotics, or treatment duration) made for patients with a suspected/proven bacterial infection. We used a grounded theory approach for data collection and analysis. Thematic saturation was reached after 21 interviews. Of the 21 participants, 10 (48%) were female, 15 (71%) were PICU attending staff, and 10 (48%) had greater than 10 years in clinical practice. Initial clinical reasoning involves using an analytical approach to determine the likelihood of bacterial infection. In case of uncertainty, an assessment of patient safety is performed, which partly overlaps with the use of intuitive clinical reasoning. Finally, if uncertainty remains, physicians tend to consult infectious diseases experts. Factors that override this clinical reasoning process include disease severity, pressure from consultants, and the tendency to continue antibiotic treatment initiated by colleagues. CONCLUSIONS: Antibiotic-related decisions for critically ill children are complex, and pediatric intensivists use several clinical reasoning strategies to decrease the uncertainty around the bacterial etiology of infections. However, disease severity and patient safety concerns may overrule decisions based on clinical evidence and lead to antibiotic use. Several cognitive biases were identified in the clinical reasoning processes.


Asunto(s)
Antibacterianos , Infecciones Bacterianas , Antibacterianos/efectos adversos , Infecciones Bacterianas/tratamiento farmacológico , Canadá , Niño , Razonamiento Clínico , Femenino , Humanos , Unidades de Cuidado Intensivo Pediátrico , Masculino
7.
BMC Med Ethics ; 23(1): 126, 2022 12 05.
Artículo en Inglés | MEDLINE | ID: mdl-36471326

RESUMEN

BACKGROUND: Following the SARS pandemic, jurisdictions around the world began developing ethical resource allocation frameworks for future pandemics-one such framework was developed by Thompson and colleagues. While this framework offers a solid backbone upon which decision-makers can rest assured that their work is driven by rigorous ethical processes and principles, it fails to take into account the nuanced experiences and interests of children and youth (i.e., young people) in a pandemic context. The current COVID-19 pandemic offers an opportunity to re-examine this framework from young people's perspectives, informed by advances in childhood ethics and children's rights. MAIN BODY: In this paper, we revisit the Thompson et al. framework and propose adaptations to the ethical processes and values outlined therein. This work is informed by expertise in clinical ethics and literature related to impacts of COVID-19 and other pandemics on the health and well-being of children around the world, though with particular attention to Canada. During the processes of drafting this work, stakeholders were consulted-aligned with the approach used by Thompson and colleagues-to validate the interpretations provided. We also propose a new principle, namely practicability, to indicate the complex balance between what is possible and what is convenient that is required in ethically sound decisions in the context of services affecting young people. We outline and discuss the strengths and limitations of our work and indicate next steps for scholars in the areas of childhood studies and child health. CONCLUSION: Efforts to ensure frameworks are truly child-inclusive should be the status-quo, so pandemic impacts and policy implications can be considered in advance of emergency preparedness contexts.


Asunto(s)
COVID-19 , Pandemias , Adolescente , Humanos , Asignación de Recursos , Formulación de Políticas , Canadá
8.
J Adv Nurs ; 78(12): 4135-4149, 2022 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-35854677

RESUMEN

The experiences of nurses who blew the whistle during the COVID-19 pandemic have exposed gaps and revealed an urgent need to revisit our understanding of whistleblowing. AIM: The aim was to develop a better understanding of whistleblowing during a pandemic by using the experiences and lessons learned of Quebec nurses who blew the whistle during the first wave of COVID-19 as a case study. More specifically, to explore why and how nurses blew the whistle, what types of wrongdoing triggered their decision to do so and how context shaped the whistleblowing process as well as its consequences (including perceived consequences). DESIGN: The study followed a single-case study design with three embedded units of analysis. METHODS: We used content analysis to analyse 83 news stories and 597 forms posted on a whistleblowing online platform. We also conducted 15 semi-structured interviews with nurses and analysed this data using a thematic analysis approach. Finally, we triangulated the findings. RESULTS: We identified five themes across the case study. (1) During the first wave of COVID-19, Quebec nurses experienced a shifting sense of loyalty and relationship to workplace culture. (2) They witnessed exceedingly high numbers of intersecting wrongdoings amplified by mismanagement and long-standing issues. (3) They reported a lack of trust and transparency; thus, a need for external whistleblowing. (4) They used whistleblowing to reclaim their rights (notably, the right to speak) and build collective solidarity. (5) Finally, they saw whistleblowing as an act of moral courage in the face of a system in crisis. Together, these themes elucidate why and how nurse whistleblowing is different in pandemic times. CONCLUSION: Our findings offer a more nuanced understanding of nurse whistleblowing and address important gaps in knowledge. They also highlight the need to rethink external whistleblowing, develop whistleblowing tools and advocate for whistleblowing protection. IMPACT: In many ways, the COVID-19 pandemic has challenged our foundational understanding of whistleblowing and, as a result, it has limited the usefulness of existing literature on the topic for reasons that will be brought to light in this paper. We believe that studying the uniqueness of whistleblowing during a pandemic can address this gap by describing why and how health care workers blow the whistle during a pandemic and situating this experience within a broader social, political, organizational context.


Asunto(s)
COVID-19 , Enfermeras y Enfermeros , Humanos , COVID-19/epidemiología , Pandemias , Quebec/epidemiología , Denuncia de Irregularidades , Lugar de Trabajo
9.
Nurs Inq ; 29(4): e12495, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-35474257

RESUMEN

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.


Asunto(s)
Familia , Enfermería Pediátrica , Adulto , Niño , Humanos , Adolescente , Investigación
10.
Nurs Ethics ; 29(7-8): 1773-1791, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35801828

RESUMEN

BACKGROUND: Serious 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 AIMS: To 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 DESIGN: A 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 CONTEXT: The study was conducted at a pediatric, orthopedic hospital. ETHICAL CONSIDERATIONS: This study was approved by McGill University Institutional Review Board. FINDINGS/RESULTS: Children 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. CONCLUSIONS: Healthcare 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.


Asunto(s)
Osteogénesis Imperfecta , Niño , Humanos , Investigación Cualitativa , Osteogénesis Imperfecta/complicaciones , Principios Morales , Personal de Salud , Antropología Cultural
11.
Arch Psychiatr Nurs ; 35(5): 549-555, 2021 10.
Artículo en Inglés | MEDLINE | ID: mdl-34561072

RESUMEN

Youth experience an increased prevalence of mental health issues, while access to timely and quality services remains problematic. This study examined the experiences of adolescents and their parents surrounding mental health care access. A 4-month focused ethnography was conducted at a mental health clinic for adolescents experiencing difficulties with emotional regulation. Findings revealed major barriers to service access, including a lack of knowledge, information, and guidance, long wait times, and stigma. Facilitators to access included social support, having a contact person, and good rapport with healthcare providers. The study highlights the importance of timely mental health service access for adolescents and provides insights for the improvement of service accessibility.


Asunto(s)
Servicios de Salud Mental , Adolescente , Niño , Personal de Salud , Accesibilidad a los Servicios de Salud , Humanos , Padres , Estigma Social
12.
J Med Ethics ; 46(6): 399-404, 2020 06.
Artículo en Inglés | MEDLINE | ID: mdl-32332149

RESUMEN

Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada's ruling in Carter v. Canada Included in this deliberation was the Special Joint Committee on Physician Assisted Dying's recommendation to extend MAID legislation beyond the inclusion of adults to mature minors. Children's agency is a construct advanced within childhood studies literature which entails eliciting children's voices in order to recognise children as active participants in constructing their own childhoods. Using this framework, we consider the possible extension of MAID legislation to most minors. We highlight important questions regarding how insights from children's voices could be mobilised in the life or death context of MAID. We conclude that children's voices have the potential to help determine their eligibility for MAID; however, incorporating children's voices in the context of MAID requires careful consideration due to the complexity of voice.


Asunto(s)
Médicos , Suicidio Asistido , Adulto , Canadá , Niño , Humanos , Legislación Médica , Asistencia Médica , Menores
13.
Cult Med Psychiatry ; 44(1): 80-109, 2020 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-31218498

RESUMEN

Restraints and seclusion are routinely used in child mental health settings for conflict and crisis management, but raise significant ethical concerns. Using a participatory hermeneutic ethnographic framework, we studied conflict and crisis management in a child mental health setting offering care to children aged 6-12 years old in Quebec, Canada. The use of this framework allowed for an in-depth examination of the local imaginaries, of what is morally meaningful to the people in the setting, in addition to institutional norms, structures and practices. Data collection involved participant observation, interviews, and documentation review, with an interpretive framework for data analysis. We argue that the prevalent view of children shared by staff members as "incomplete human becomings" led to the adoption and legitimization of authoritative norms, structures and practices guided largely by a behavioral approach, which sometimes led to an increased use of control measures for reasons other than imminent harm. Children experienced these controlling practices as abusive and hindering the development of trusting relationships, which impeded the implementation of more collaborative approaches staff members sought to put in place to prevent the use of control measures. Study results are discussed in light of conceptions of children as moral agents.


Asunto(s)
Actitud del Personal de Salud , Hermenéutica , Trastornos Mentales/terapia , Servicios de Salud Mental/ética , Aislamiento de Pacientes/ética , Relaciones Profesional-Paciente/ética , Servicio de Psiquiatría en Hospital/ética , Restricción Física/ética , Adulto , Antropología Cultural , Niño , Femenino , Humanos , Masculino , Quebec
14.
Nurs Philos ; 21(2): e12289, 2020 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-31729125

RESUMEN

In this article, the nursing health history is revisited with a hermeneutic lens to uncover means by which this tool can better serve nursing practice. It is argued that further distanciation from the developmental and medical model is necessary to accurately uncover health and history in the nurse-client encounter. Based on the works of prominent hermeneutic philosophers, such as Heidegger, Gadamer, Merleau-Ponty, Ricoeur, and Taylor, four orientations to health history and nursing are explored: orientation to caring, orientation to narrative, orientation to time, and orientation to the body. The nursing health history is used as a vehicle for illuminating the usefulness of a hermeneutic perspective in everyday nursing practice. This article reveals views of health, history, and health history that are already known to nurses and the nursing milieu but are concealed by more dominant outlooks. The hermeneutical perspective presented in this article can help to reveal the important dimensions of everyday nursing practice and foster a richer attunement with the complex health experiences of individuals.


Asunto(s)
Hermenéutica , Anamnesis/métodos , Enfermería/métodos , Humanos , Anamnesis/estadística & datos numéricos , Enfermería/tendencias
15.
Nurs Ethics ; 26(3): 674-687, 2019 May.
Artículo en Inglés | MEDLINE | ID: mdl-28784036

RESUMEN

BACKGROUND: A growing number of frameworks for the practice of clinical ethics are described in the literature. Among these, hermeneutical frameworks have helped highlight the interpretive and contextual nature of clinical ethics practice. OBJECTIVES: The aim of this article is to further advance this body of work by drawing on the ideas of Charles Taylor, a leading hermeneutical philosopher. DESIGN/FINDINGS: A Hermeneutical Rapprochement Framework is presented for clinical ethics practice, based on Taylor's hermeneutical "retrieval" and "rapprochement." This builds on existing hermeneutical approaches for the practice of clinical ethics by articulating a framework with interpretive and reconciliatory scope that extends beyond the presenting "local" context. A Hermeneutical Rapprochement Framework considers broader socio-historical horizons and imaginaries grounded on Taylor's expansive work in epistemological, ontological, political, and moral philosophy. DISCUSSION: The framework is discussed in terms of how it can be operationalized for clinical practice as well as normative development. Implications for the educational preparation of clinical ethicists are also discussed. Although this work is directly relevant for clinical ethicists, it can also help inform the ethical practice of all clinicians.


Asunto(s)
Ética en Enfermería , Filosofía en Enfermería , Teoría Ética , Hermenéutica , Humanos , Narración
16.
Paediatr Child Health ; 24(1): e8-e12, 2019 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-30792603

RESUMEN

There is a paucity of published research and normative standards to guide health care providers in managing issues related to children's confidentiality. In this article, we examine challenges regarding the respect for confidentiality with children and youth in health care and offer guiding principles for clinical practice. We present an ethical framework and practice recommendations for: (a) respecting confidentiality for children who have decision-making capacity (as legally defined in different jurisdictions) and (b) recognizing some degree of respect for confidentiality among children who do not have decision-making capacity. This article will help incite additional analyses and research that can further refine the normative and practice standards proposed here.

17.
Pediatr Crit Care Med ; 19(8S Suppl 2): S10-S18, 2018 08.
Artículo en Inglés | MEDLINE | ID: mdl-30080802

RESUMEN

As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies, withholding, or withdrawing therapies in a PICU. Clarifying beliefs and values is a necessary prerequisite to approaching these conversations. Striving for medical consensus is important. Discussion, reflection, and ethical analysis may determine a range of views that may reasonably be respected if professional disagreements persist. Parental decisional support is recommended and should incorporate their information needs, perceptions of medical uncertainty, child's condition, and their role as a parent. Child's involvement in decision making should be considered, but may not be possible. Culturally attuned care requires early examination of cultural perspectives before misunderstandings or disagreements occur. Societal influences may affect expectations and exploration of such may help frame discussions. Hospital readiness for support of social media campaigns is recommended. Consensus with family on goals of care is ideal as it addresses all parties' moral stance and diminishes the risk for superseding one group's value judgments over another. Engaging additional supportive services early can aid with understanding or resolving disagreement. There is wide variation globally in ethical permissibility, cultural, and societal influences that impact the clinician, child, and parents. Thoughtful consideration to these issues when approaching decisions about limitation or withdrawal of life-sustaining therapies will help to reduce emotional, spiritual, and ethical burdens, minimize misunderstanding for all involved, and maximize high-quality care delivery.


Asunto(s)
Toma de Decisiones , Padres/psicología , Cuidado Terminal/normas , Privación de Tratamiento/ética , Niño , Enfermedad Crítica/psicología , Enfermedad Crítica/terapia , Asistencia Sanitaria Culturalmente Competente , Femenino , Humanos , Unidades de Cuidado Intensivo Pediátrico/normas , Masculino , Participación del Paciente/psicología , Medios de Comunicación Sociales
18.
Qual Health Res ; 28(7): 1135-1144, 2018 06.
Artículo en Inglés | MEDLINE | ID: mdl-29542396

RESUMEN

When conducting ethics research with children in health care settings, studying children's experiences is essential, but so is the context in which these experiences happen and their meaning. Using Charles Taylor's hermeneutic philosophy, we developed a methodological framework for health ethics research with children that bridges key aspects of ethnography, participatory research, and hermeneutics. This qualitative framework has the potential to offer rich data and discussions related to children as well as family members and health care workers' moral experiences in specific health care settings, while examining the institutional norms, structures, and practices and how they interrelate with experiences. Through a participatory hermeneutic ethnographic study, important ethical issues can be highlighted and examined in light of social/local imaginaries and horizons of significance, to address some of the ethical concerns that can be present in a specific health care setting.


Asunto(s)
Ética Clínica , Investigación Cualitativa , Proyectos de Investigación , Antropología Cultural , Niño , Familia , Personal de Salud , Humanos
19.
Int J Paediatr Dent ; 28(2): 189-197, 2018 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-28840947

RESUMEN

BACKGROUND: In recent years, conceptions of childhood have been evolving towards an increased recognition of children as active agents, capable of participating in the determination of their wellbeing. In pediatric dentistry, the extent to which these conceptions are being discursively endorsed is not well known. AIM: The aim of this investigation was to examine the discursive construction of childhood in seminal North American pedagogical dentistry materials. DESIGN: We conducted a qualitative discourse analysis of a sample of prominent texts using a sociological discourse analysis approach. RESULTS: We analyzed the latest edition of Macdonald and Avery's textbook (Chapter: Non pharmacologic management of children's behaviors) and the clinical practice guidelines published by the American Academy of Pediatric Dentistry, AAPD (Behavior guidance for the pediatric dental patient). The analysis produced five salient discursive categories: socialization through behavior modification; development and behavior; paternalism; the utility of child-centered communication; and consequentialism. While there were instances of a child-centered focus in the texts, the main discourses were rooted in developmentalism and behaviorism. There was scant acknowledgment of the importance of children's agency or voice, which runs contrary to child-centered discourses and practices in related disciplines (e.g., pediatric medicine, nursing). CONCLUSION: Predominant discourses in pediatric dentistry suggest a paternalistic, behaviorist approach to the 'management' of children in the dental office, focused primarily on completing interventions. Priorities for the future development of pediatric dentistry are discussed, integrating more child-centered approaches.


Asunto(s)
Odontología Pediátrica , Libros de Texto como Asunto , Niño , Conducta Infantil , Atención Dental para Niños/psicología , Humanos
20.
Nurs Ethics ; 25(7): 906-917, 2018 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-27928069

RESUMEN

BACKGROUND:: The research question for this study was as follows: Is the Code of Ethics for Nurses in Italy (Code) a valid or useful decision-making instrument for nurses faced with ethical problems in their daily clinical practice? METHOD:: Focus groups were conducted to analyze specific ethical problems through 11 case studies. The analysis was conducted using sections of the Code as well as other relevant documents. Each focus group had a specific theme and nurses participated freely in the discussions according to their respective clinical competencies. ETHICAL CONSIDERATIONS:: The executive administrative committee of the local nursing licensing council provided approval for conducting this project. Measures were taken to protect the confidentiality of consenting participants. FINDINGS:: The answer to the research question posed for this investigation was predominantly positive. Many sections of the Code were useful for discussion and identifying possible solutions for the ethical problems presented in the 11 cases. CONCLUSION:: We concluded that the Code of Ethics for Nurses in Italy can be a valuable aid in daily practice in most clinical situations that can give rise to ethical problems.


Asunto(s)
Códigos de Ética , Toma de Decisiones/ética , Ética en Enfermería , Personal de Enfermería/psicología , Femenino , Grupos Focales , Humanos , Italia , Masculino , Personal de Enfermería/estadística & datos numéricos , Reproducibilidad de los Resultados
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