Living ethics: a stance and its implications in health ethics.

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a "living ethics", described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process.

Developing a living lab in ethics: Initial issues and observations.

Living labs are interdisciplinary and participatory initiatives aimed at bringing research closer to practice by involving stakeholders in all stages of research. Living labs align with the principles of participatory research methods as well as recent insights about how participatory ways of generating knowledge help to change practices in concrete settings with respect to specific problems. The participatory, open, and discussion-oriented nature of living labs could be ideally suited to accompany ethical reflection and changes ensuing from reflection. To our knowledge, living labs have not been explicitly trialed and reported in ethics literature. In this discussion paper, we report and discuss four initial issues that marked the process of setting up a living lab in ethics: (1) determining the goals and expected outcomes of an ethics living lab; (2) establishing operational procedures; (3) selecting communities and defining pilot projects; and (4) adopting a lens to tackle emerging questions and challenges. We explain these four issues and present the paths taken based on the novel and specific orientation, that is, living ethics, at the basis of this project. In alignment with living ethics and É-LABO, we approach challenges as learning opportunities to ask not only "how" questions but also "why" questions. We hope that this discussion paper informed by our experience helps to clarify the theoretical, methodological, and practical approaches necessary to successfully adopt and employ living labs in ethics.

Children and adolescents' mental health in pandemics and confinement: A scoping review of vulnerability factors and repercussions.

Children and adolescents are a population at particular risk of experiencing adverse mental health repercussions related to pandemics. To understand vulnerability factors and repercussions of pandemics and related sanitary measures on children and adolescents' mental health, we performed a scoping review to examine and synthesize literature. In total, 66 articles were included. Results present: (1) factors that increase vulnerability to adverse mental health repercussions (e.g., having a pre-existing mental health condition, social isolation, low socio-economic status, parental distress, and overexposure to media content) and (2) specific mental health repercussions (e.g., anxiety, fear, depression, and externalizing behaviors). Addressing concerns underlined in this review could contribute to preventing further negative mental health repercussions of pandemics for children and adolescents and better prepare governments and professionals to address these highly challenging situations. Recommendations for practice include enhancing healthcare professionals' awareness about possible detrimental repercussions pandemics and sanitary measures have on children and adolescents' mental health, assessing changes for those with pre-existing mental health conditions, allocating funding for telehealth research, and providing greater support to healthcare providers.

Children and adolescents' mental health during the COVID-19 pandemic: A qualitative study of their experiences.

TOPIC: Public health measures implemented in response to the COVID-19 pandemic severely disrupted children and adolescents' (C&A) lives, affecting their sense of structure, predictability, and security. PURPOSE: To examine C&A' experiences during the COVID-19 pandemic to better understand how this context and its associated public health measures affected them and their mental health, and to identify helpful coping strategies. SOURCES USED: The study was guided by a participatory hermeneutic framework. Semistructured interviews were conducted with 25 C&A aged 6-17 years during the first and second pandemic waves. Participants' interviews were analyzed following a narrative synthesis approach, through which C&A' experiences were contrasted and contextualized to highlight relevant themes. CONCLUSIONS: Participants described a distinct pattern related to their mental health as the pandemic unfolded, which followed the severity of the pandemic in the province. Negative repercussions on their mental health were linked to the loss of social activities, imposed public health measures, transition to online learning, and challenges with family relationships. Certain youth shared positive societal and moral reflections triggered by the pandemic context. Coping strategies reported include: having a variety of hobbies; expressing their emotions; and accessing financial and material resources. This study highlights the importance of supporting C&A' mental health during crisis situations such as a pandemic. Their perspectives are vital for clinical practice and policy improvement, particularly to find means for social engagement while maintaining safety.

The Impact of Canadian Medical Delays and Preventive Measures on Breast Cancer Experience: A Silent Battle Masked by the COVID-19 Pandemic.

BACKGROUND: The COVID-19 pandemic led to the prioritization of breast cancer services towards patients who are currently in treatment or diagnosed with advanced stages of breast cancer, and the self-assessment of both tumor growth and treatment side effects. Alongside the stress associated with cancer itself, delays and complications due to COVID-19 may impact patients' mental health. PURPOSE: To describe the experiences of Canadians living with breast cancer who received a diagnosis and/or treatment during the pandemic, and to identify their recommendations for improving patients well-being during future pandemics. METHODS: Semi-structured interviews were conducted with eighteen women living with breast cancer who also completed the Distress Thermometer questionnaire. The transcripts were analyzed using a descriptive thematic content methodology. RESULTS: Women who started their breast cancer screening or treatment before the pandemic reported fewer delays and less psychological distress than those who started during the pandemic. Participants reported feeling dehumanized while receiving their medical care, being unable to be accompanied during medical visits, and fearing treatment interruption during the pandemic. Patient recommendations for improving care and psychological support included the presence of family caregivers at consultations to receive the diagnosis and for the first treatment session. CONCLUSION: Study findings provide new insights on how healthcare restrictions during the pandemic impacted on patient experiences and their well-being during screening and treatment for breast cancer. The need for cancer nursing practices and care delivery strategies that promote the delivery of compassionate, patient-centred care and the provision of psychological support during future pandemics are identified.

Acknowledging caregivers' vulnerability in the managment of challenging behaviours to reduce control measures in psychiatry.

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.

Consequences of the COVID-19 Pandemic on Children's Mental Health: A Meta-Analysis.

Background: The COVID-19 pandemic has exacerbated mental health problems in many individuals, including children. Children with pre-existing socio-demographic or developmental risk factors may be particularly vulnerable to the negative effects of the pandemic and associated public health preventive measures. Objective: This systematic review and meta-analysis explored the impacts of the COVID-19 pandemic on the mental health of children aged 5-13 years-old, while highlighting the specific difficulties experienced by children with neurodevelopmental issues or chronic health conditions. Methods: A systematic search of the published literature was conducted in Medline, ERIC, PsycINFO, and Google Scholar, followed by a quantitative meta-analysis of the eligible studies. Results: Out of the 985 articles identified, 28 empirical studies with prospective or retrospective longitudinal data were included in the quantitative synthesis. COVID-19 lockdown measures were associated with negative general mental health outcomes among children (g = 0.28, p < 0.001, and k = 21), but of small magnitude. Sleep habits were also changed during the pandemic, as sleep duration significantly increased in children (g = 0.32; p = 0.004, and k = 9). Moreover, results did not differ between children from the general population and those from clinical populations such as children with epilepsy, oncology, neurodevelopmental disorders, or obesity. Effect sizes were larger in European vs. Asian countries. Conclusions: Studies included in this review suggest that children's mental health was generally negatively impacted during the COVID-19 pandemic. More research is needed to understand the long-term effects of the COVID-19 pandemic on children's mental health and the influence of specific risks factors as they evolve over time.

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.

Everyday ethics of suicide care: Survey of mental health care providers' perspectives and support needs.

Suicide occurs in people of all ages and backgrounds, which negatively affects families, communities, and the health care providers (HCPs) who care for them. The objective of this study was to better understand HCPs' perspectives of everyday ethical issues related to caring for suicidal patients, and their perceived needs for training and/or support to address these issues. We conducted a mixed methods survey among HCPs working in mental health in Québec, Canada. Survey questions addressed their perspectives and experiences of everyday ethical challenges they encounter in their practice with people who are suicidal, and their perceived needs for training and/or support therein. 477 HCPs completed the survey. Most participants mentioned encountering ethical issues when caring for people who are suicidal. The challenges HCPs encounter in their practice with people who are suicidal are numerous, including issues related to maintaining privacy, confidentiality, freedom and the therapeutic relationship. The lack of time, resources and professional support to address these issues was emphasized. Most HCPs reported that the training or education they have received does not allow them to address everyday ethical issues related to suicide care. In sum, there is a clear reported need for better training and support for HCPs who are offering care to people who are suicidal in relation to everyday ethical issues they encounter. Implications for practice include providing greater access to training, including access to specialists in ethics to address specific issues. This additional support could alleviate morally distressing situations for HCPs.

Suicide in children: Concept analysis using Rodgers's evolutionary approach.

TOPIC: Although the concept of suicide in children and adolescents is widely present in the literature, its conceptual definition varies according to context, discipline, and time. How this concept is defined impacts the delivery of care to children and adolescents regarding suicide prevention in mental health settings and in the community. PURPOSE: Using Rodgers's evolutionary method, we examined the antecedents, attributes, and consequences of "suicide in children" through temporal trends, and geographic locations. SOURCES: In total, 106 articles were included. Searches were performed using CINAHL, PsycINFO, and Medline, as well as Google Scholar as a complementary tool. CONCLUSIONS: Through a thematic analysis, we identified three themes: (1) developmental perspectives, (2) factors predicting suicide in children, and (3) the emancipation of children as active agents in society. Recent literature shows a movement toward acknowledging the voice of children and adolescents regarding suicide. We address clinical and future implications for the development of this concept.

Children's assent within clinical care: A concept analysis.

Seeking children's assent has been put forward as a way to foster children's involvement in the healthcare decision-making process. However, the functions of the concept of assent within clinical care are manifold, and methods used to recognize children's capacities and promote their involvement in their care remain debated. We performed an instrumentalist concept analysis of assent, with 58 included articles. Final themes were jointly identified through a deliberative process. Two distinct perspectives of assent were predominant: as an affirmative agreement for a specific decision and as part of a continuous, interactive process of care. Differing standards were provided as to how and when to apply the concept of assent. The concept of dissent was largely omitted from conceptions of assent, especially in situations for which children's refusal would lead to severe health consequences. Ethical implications included fostering autonomy, reducing physical/psychological harm to the child, respecting the child as a human being, and fulfilling the universal rights of the child. There remain important gaps in the theory of assent and its desirable and possible practical implications. Practical standards are largely missing, and evidence supporting the claims made in the literature requires further investigation.

Moral Experiences of Crisis Management in a Child Mental Health Setting: A Participatory Hermeneutic Ethnographic Study.

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.

Instrumentalist analyses of the functions of ethics concept-principles: a proposal for synergetic empirical and conceptual enrichment.

Bioethics has made a compelling case for the role of experience and empirical research in ethics. This may explain why the movement for empirical ethics has such a firm grounding in bioethics. However, the theoretical framework according to which empirical research contributes to ethics-and the specific role(s) it can or should play-remains manifold and unclear. In this paper, we build from pragmatic theory stressing the importance of experience and outcomes in establishing the meaning of ethics concepts. We then propose three methodological steps according to which the meaning of ethics concepts can be refined based on experience and empirical research: (1) function identification, (2) function enrichment, and (3) function testing. These steps are explained and situated within the broader commitment of pragmatic ethics to a perspective of moral growth and human flourishing (eudaimonia). We hope that this proposal will give specific direction to the bridging of theoretical and empirical research in ethics and thus support stronger actualization of ethics concepts.

Exploring Ethical Issues Related to Patient Engagement in Healthcare: Patient, Clinician and Researcher's Perspectives.

Patient engagement in healthcare is increasingly discussed in the literature, and initiatives engaging patients in quality improvement activities, organizational design, governance, and research are becoming more and more common and have even become mandatory for certain health institutions. Here we discuss a number of ethical challenges raised by this engagement from patients from the perspectives of research, organizational/quality improvement practices, and patient experiences, while offering preliminary recommendations as to how to address them. We identified three broad categories of ethical issues that intersect between the different types of patient engagement: (1) establishing a shared vision about goals of patient engagement and respective roles; (2) the process and method of engaging with patients; and (3) practical aspects of patient engagement. To explain these issues, we build from our personal, professional, and academic experiences, as well as traditions such as pragmatism and hermeneutics that stress the importance of participation, empowerment, and engagement.  Patient engagement can be highly valuable at numerous levels, but particular attention should be paid to the process of engaging with patients and related ethical issues. Some lessons from the literature on the ethics of participatory research can be translated to organizational and quality improvement practices.

Participatory Hermeneutic Ethnography: A Methodological Framework for Health Ethics Research With Children.

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.

Children's moral experiences of crisis management in a child mental health setting.

The experiences of children related to conflict and crisis management in child mental health settings, especially those aged 12 and below, have been rarely studied. This study examined the moral experiences of children related to conflict and crisis management and the related use of restraint and seclusion in a child mental health setting. A 5-month focused ethnography using a participatory hermeneutic framework was conducted in a day hospital programme for children with severe disruptive disorders within a mental health institute. Children considered restraints and seclusion could help them feel safe in certain instances, for example if another child was being aggressive towards them or in exceptional cases to prevent self-injury. However, their own experiences of being restrained were predominantly negative, especially if not knowing the reason for their use, which they then found unfair. Some of the children emphasized the punitive nature of the use of restraints and seclusion, and most children disagreed with these practices when used as a punishment. Children's perspectives also highlighted the limits of the use of a uniform de-escalation approach by the staff to manage crises. Children considered discussing with the staff and developing a relationship with them as more helpful in case of a crisis then the use of a de-escalation approach or coercive strategies.

Hospital rules and regulations: The perspectives of youth receiving psychiatric care.

BACKGROUND: Rules and regulations represent an aspect of psychiatric hospitalization about which little is known. STUDY PURPOSE: To explore the perceptions of rules from the perspective of youth receiving hospital-based psychiatric services. DESIGN: Qualitative descriptive. METHODS: Perceptions of rules were elicited through semi-structured interviews with a convenience sample of six youth. RESULTS: Rules were perceived as governing virtually all aspects of everyday living in the hospital environment. Rules were used to structure daily activities, routines, and social interactions, and were embedded within clinical protocols and treatment plans. For each participant, "making sense" or "not making sense" were central themes through which rules were interpreted as being either therapeutic or oppressive. Rules that made "no sense" negatively affected youth mood, behavior, treatment adherence, and engagement in a collaborative relationship. CONCLUSION: Working in partnership with youth in psychiatric care to establish, implement, and evaluate rules that "make sense" can promote positive health outcomes and prevent negative, unintended consequences.

A concept analysis of children's agency within the health literature.

The capacity of children to act as agents is being increasingly recognized and has important implications for health research and practice. However, there are various discrepancies in how children's agency is defined in the literature. The aim of this analysis was to examine the concept of children's agency within the health-related literature, using Rodgers evolutionary method. The following questions were addressed: How did the concept of agency become associated with children in the health-related literature? What are the sociocultural and legal contexts that surround the concept of children's agency? What is the meaning of children's agency? Forty-five articles were included in the analysis. An inductive approach was used to identify the attributes of children's agency as well as the temporal, disciplinary, and paradigmatic trends in its conceptualization. The concept of children's agency first appeared in the health literature in the 1980s and was defined as an ability children could gradually develop. Later on, children's agency was used to refer to the capacity of all children to influence their own and others' health-care needs and is now increasingly used to refer to children as active agents who reflect on and construct their social worlds.

Exploring Helpful Nursing Care in Pediatric Mental Health Settings: The Perceptions of Children with Suicide Risk Factors and Their Parents.

This qualitative descriptive study explored helpful nursing care from the perspective of children with suicide-associated risk factors, and their parents. Data were collected through participant observation followed by a debriefing session with children, and semi-structured interviews with parents. The inductive analysis revealed four themes of helpful interventions: (1) caring for the child as a special person; (2) caring for the parents; (3) managing the child's illness; and (4) creating a therapeutic environment. The study findings highlight the importance of the relational aspect of nursing care and provide important insights related to family-centered and strengths-based practice with children at increased risk for suicide later in life.