Patient and Family Experience With Discharge Directly Home From the Pediatric ICU.

BACKGROUND: Children are increasingly discharged directly from the PICU. Transitions have been recognized as a period of increased patient and caregiver stress and risk of adverse events. No study has evaluated patient and caregiver outcomes after direct discharge from the PICU. This study aimed to explore the family's experiences with discharge directly home (DDH) from the PICU. METHODS: This exploratory mixed-methods study was conducted in the PICU of the Institution is Sainte-Justine Hospital from February to July 2021. We included families of children expected to be DDH within 12 hours. Semistructured interviews were conducted at discharge, followed by telephone interviews 7 and 28 days post-PICU discharge. We measured comfort on a 5-point Likert scale and screened for anxiety using the Generalized Anxiety Disorder-7 tool. RESULTS: Families of 25 patients were interviewed. Thematic analysis of the interviews revealed several themes, such as feeling stress and anxiety, feeling confident, anticipating home care, and needing support. These findings complemented the quantitative findings; the median comfort score was 4 (comfortable) (interquartile range 4-5) and 8 (interquartile range 4-12) for the Generalized Anxiety Disorder-7 on the day of discharge, with 16 reporting clinically significant anxiety. In the 28-day study period, 2 patients were readmitted and 6 had visited the emergency department. CONCLUSIONS: Despite feelings of anxiety, many families felt comfortable with DDH from the PICU. Increasing our understanding of the patient and family experiences of discharge from the PICU will help to better support these patients and their families during transition.

Parents' perspective on recovery at home following adenotonsillectomy: a prospective single-centre qualitative analysis.

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.

Introducing SAMMSA, a Five-Step Method for Producing 'Quality' Qualitative Analysis.

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.

How Children's participation ought to be practiced: A preliminary ethical framework to optimise the participation of children with osteogenesis imperfecta in health care.

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.

Moral experiences of children with medical complexity: A participatory hermeneutic ethnography in Brazil.

Children with medical complexity have been defined within the literature as chronically ill and medically fragile children with complex care needs. Care for these children raises significant ethical and moral considerations. Therefore, this participatory ethnographic study conducted with eight children and their families aimed to better understand the moral experiences of children with medical complexity, based on views of children as moral agents and capable of understanding and expressing interpretations about their lived experiences. Through our participatory hermeneutical ethnographic research, we were able to shed light on how children with medical complexity express their moral experiences within a complex sociopolitical context, perpetuating dominant outlooks on what is considered a "normal" child. Children with medical complexity described their resistance to these dominant views as they strive to be included in discussions about matters that affect them, reacting to painful medical procedures and treatments, and expressing their concerns about their future aspirations. The knowledge advanced by this study about moral experiences of children with medical complexity can inform understandings of children's interests based on their own interpretations within complex sociopolitical contexts that value their lives differently.

Re-examining medical assistance in dying for mature minors in Canada: Reflections for health leaders.

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.

Children as an afterthought during COVID-19: defining a child-inclusive ethical framework for pandemic policymaking.

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.

Questioning the Value of Compliance-Oriented Programs With Traumatized Children and Youth: A Childhood Ethics Perspective.

This Viewpoint aims to question the value of compliance-oriented programs' principles as they apply to traumatized children and youth.

Blowing the whistle during the first wave of COVID-19: A case study of Quebec nurses.

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.

The moral experiences of children with osteogenesis imperfecta.

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.

The VOICE Children's Nursing Framework: Drawing on childhood studies to advance nursing practice with young people.

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.

Clinical Reasoning Behind Antibiotic Use in PICUs: A Qualitative Study.

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.

An exploration of youth and parents' experiences of child mental health service access.

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.

Life-sustaining treatment decisions in pediatric intensive care: an Italian survey on ethical concerns.

OBJECTIVES: To investigate how life-sustaining treatment (LST) decisions are made and identify problematic ethical concerns confronted by physicians and nurses in pediatric intensive care within Italy. METHODS: An 88-question online survey was created, based on a previous qualitative study conducted by this team. The survey was designed to identify how LST decisions were managed; contrasting actual practices with what participants think practices should be. Replies from physicians and nurses were compared, to identify potential inter-professional ethical tensions. The study also identified participants' principal ethical concerns. Moreover, open-ended questions elicited qualitative perspectives on participants' views. The survey was pilot-tested and refined before initiation of the study. RESULTS: 31 physicians and 65 nurses participated in the study. Participants were recruited from pediatric intensive care units across five Italian cities; i.e., Florence, Milan, Padua, Rome, Verona. Statistically significant differences were identified for (a) virtually all questions contrasting actual practices with what participants think practices should be and (b) 14 questions contrasting physician replies with those of nurses. Physicians and nurses identified the absence of legislative standards for LST withdrawal as a highly problematic ethical concern. Physicians also identified bearing responsibility for LST decisions as a major concern. Qualitative descriptions further demonstrated that these Italian pediatric intensive care clinicians encounter significantly distressing ethical problems in their practice. CONCLUSIONS: The results of this study highlight a need for the development of (a) strategies for improving team processes regarding LST decisions, so they can be better aligned with how clinicians think decisions should be made, and (b) Italian LST decision-making standards that can help ensure optimal ethical practices.

An Ethnographic Study of the Moral Experiences of Children with Cancer in New Delhi, India.

There is a paucity of research examining children's experiences with cancer in India. Childhood ethics is an emerging field, focusing on the moral dimension of children's experiences, to promote children's participation in their health care. A focused ethnography, using a moral experience framework, was conducted to better understand children's participation in decisions, discussions, and actions in three oncology settings in New Delhi, India. We interviewed key informants, retrieved key documents, and conducted semi-structured interviews and participant observations with children. All 22 children demonstrated interest in varying aspects of their cancer care. Certain factors facilitated or impeded their participation. Some children became distressed when they lacked information about their treatment or were not given opportunities to enhance their understanding. The results advance our understanding of the moral experiences of children with cancer in India for healthcare professionals, policy makers, families, and interested others.

Moral Distress and Other Wellness Measures in Canadian Critical Care Physicians.

Rationale: Understanding the magnitude of moral distress and its associations may point to solutions. Objectives: To understand the magnitude of moral distress and other measures of wellness in Canadian critical care physicians, to determine any associations among these measures, and to identify potentially modifiable factors. Methods: This was an online survey of Canadian critical care physicians whose e-mail addresses were registered with either the Canadian Critical Care Society or the Canadian Critical Care Trials Group. We used validated measures of moral distress, burnout, compassion fatigue, compassion satisfaction, and resilience. We also measured selected individual, practice, and workload characteristics. Results: Of the 499 physicians surveyed, 239 (48%) responded and there were 225 usable surveys. Respondents reported moderate scores of moral distress (107 ± 59; mean ± standard deviation, maximum 432), one-third of respondents had considered leaving or had previously left a position because of moral distress, about one-third met criteria for burnout syndrome, and a similar proportion reported medium-high scores of compassion fatigue. In contrast, about one-half of respondents reported a high score of compassion satisfaction, and overall, respondents reported a moderate score of resilience. Each of the "negative" wellness measures (moral distress, burnout, and compassion fatigue) were associated directly with each of the other "negative" wellness measures, and inversely with each of the "positive" wellness measures (compassion satisfaction and resilience), but moral distress was not associated with resilience. Moral distress was lower in respondents who were married or partnered compared with those who were not, and the prevalence of burnout was lower in respondents who had been in practice for longer. There were no differences in any of the wellness measures between adult and pediatric critical care physicians. Conclusions: Canadian critical care physicians report moderate scores of moral distress, burnout, and compassionate fatigue, and moderate-high scores of compassion satisfaction and resilience. We found no modifiable factors associated with any wellness measures. Further quantitative and qualitative studies are needed to identify interventions to reduce moral distress, burnout, and compassion fatigue.

Nurses' Moral Experiences of Ethically Meaningful End-of-Life Care: Distress, Resilience, Responsibility, and Care.

BACKGROUND: Moral distress, the phenomenon in which an agent is constrained in acting on their ethical choice, is a reoccurring theme in the literature on nurses' experiences of end-of-life care (EOLC). Understanding moral engagement solely through a lens of moral distress can be limiting-as such, we sought to explore the diverse experiences nurses consider ethically meaningful in their palliative and EOLC practice. PURPOSE AND METHODS: This article presents an exploration and analysis of stories told to us, within an interpretive description study, by five nurses practicing in EOLC in diverse settings across Canada. Although these stories were told to us in a research context, the purpose of this theory article is to explore what these stories demonstrate about the moral engagement of nurses caring for dying patients. FINDINGS: Our analysis suggests that while moral distress is a feature of nursing stories, so too are many other dimensions of moral experience, including resilience, responsibility, and care. IMPLICATIONS FOR PRACTICE: Expanding how we understand nurses' moral engagement in the care of dying patients has implications for how we account for the many responsibilities that nurses shoulder in striving to provide "good" care to people at the end of life.