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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., (© 2024. The Author(s).)

Background The experience of breast cancer diagnosis leads to being confronted with the unknown and uncertainty. In some cases, patients develop symptoms of psychological distress after the diagnosis, which can have a negative influence during and after treatment. In Quebec, there are several breast cancer clinics that appear to offer psychological assessment to patients and psychosocial services during the different phases of the disease. To our knowledge, few Quebec studies have looked at the effectiveness of and access to psychosocial services in times of non-crisis. The COVID-19 pandemic also led to changes in breast clinics (e.g., closure of screening clinics, reception of diagnosis remotely, changes in treatment plans). However, no Canadian study has qualitatively examined patients' experiences of the impact of the pandemic on access and effectiveness of these services. Objectives The first objective of this qualitative study is to describe the perspectives of Quebec women who received a breast cancer diagnosis and/or treatment during the pandemic on the access to and effectiveness of psychosocial services. In addition, the second objective is to identify patient recommendations for improving the well-being of patients receiving psychosocial oncology services. Method As part of this larger project, we conducted semi-structured interviews with 18 Quebec patients (M = 47.05 years, SD = 9.07) diagnosed and/or treated for breast cancer before and during the pandemic. Descriptive analyses performed in MaxQDA allowed us to establish a thematic guide and narrative summaries. Results A minority of participants (n = 6) were offered psychosocial services at the time of their diagnosis. Although not all of them used the resources offered, they appreciated having them available. In contrast, 12 participants did not receive psychosocial resources, and more than half of these women were unsatisfied as they experienced intense psychological distress following diagnosis, which continued during treatment. Many women (n = 12) had to seek help on their own. Conclusion In order to improve the long-term experience of patients in times of crisis and non-crisis in Quebec, the results show that it could be beneficial to offer psychosocial services based on the needs of users, rather than solely on the severity of psychological symptoms.

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., (© 2023 The Authors. Bioethics published by John Wiley & Sons Ltd.)

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.

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.

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., (© 2022 Wiley Periodicals LLC.)

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.

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.

Background: The perception of diagnosis announcement, the social support and the coping strategies seem to be determining factors for the quality of life of multiple sclerosis (MS) patients, with possible transcultural variations. This study explores these psychosocial dimensions in Lebanese and French MS patients., Methods: For this cross-sectional multi-center study, 8 questionnaires were used to assess quality of life, family support, coping strategies, mood, fatigue, stress, and hopelessness in MS patients. 7 were translated into Arabic and then back translated into French. These were administered to a group of Lebanese MS patients and compared to an MS sample from France. The data was collected for both populations and analyzed., Results: A total of 107 patients were included, 46 Lebanese and 61 French. The majority of MS patients were young females with a high level of education, relapsing remitting form of MS and a low level of disability. Both populations exhibited comparable quality of life and answers on the questionnaires regarding mood disorders, hopelessness, and perceived stress. However, the French patients had significantly more fatigue. Perceived social support given by family was considered greater in the French group compared to the Lebanese one. Also, maladaptive coping strategies (such as self-distraction, denial, behavioral disengagement, substance use, self-blame, venting) were used more frequently by the French population compared to the Lebanese, and this correlated with higher anxiety scores. Diagnosis communication was overall brief, informative, and satisfying in both populations., Conclusion: This study highlighted transcultural differences between French and Lebanese MS patients mainly in social support and coping strategies., (Copyright © 2022. Published by Elsevier B.V.)

This article examines the evolution of the understanding of child mental health based on documents that guide nursing practise in Brazil. Eleven relevant documents were submitted to normative analysis, which revealed four themes: Developmental approach of the child mental health; Brazilian policies and social history of children; Spaces for prevention, promotion, and care in children's mental health; and The (in)visibility of nurses' work in the context of mental health. These are linked through ideological and social constructions that have although transformed through the years yet remained the same in their core. Based on our results, we propose adopting a decolonial perspective to compose nursing knowledge to improve child mental health in Brazil.

Multiple sclerosis (MS) is associated with deficits in social cognition, the process underlying social interaction and cognitive function. However, the relationships between executive impairment and social cognition remain unclear in MS. Previous studies exclusively focused on group comparisons between healthy controls and patients with MS, treating the latter as a homogeneous population. The variability of socio- and neurocognitive profiles in this pathology therefore remains underexplored. In the present study, we used a cluster analytic approach to explore the heterogeneity of executive and social cognition skills in MS. A total of 106 patients with MS were compared with 53 healthy matched controls on executive (e.g., working memory) and social cognition (facial emotion recognition and theory of mind) performances. A cluster analysis was then performed, focusing on the MS sample, to explore the presence of differential patterns of interaction between executive and social cognition difficulties and their links to sociodemographic, clinical and cognitive variables. We identified three distinct functional profiles: patients with no executive or social cognition deficits (Cluster 1); patients with difficulties in facial emotion recognition and theory of mind and, to a lesser extent, executive functioning (Cluster 2); and patients with executive functioning difficulties only (Cluster 3). Clinical characteristics (disease duration, disability, fatigue) did not differ between clusters. CONCLUSIONS: These results suggest that there are qualitative differences in the social cognition and executive difficulties that are commonly found among patients with MS. If replicated, the identification of these profiles in clinical practice could allow for more individualized rehabilitation., (© 2021 The British Psychological Society.)

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., (Copyright © 2021 Elsevier Inc. All rights reserved.)

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., Competing Interests: The authors have declared that no competing interests exist.

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., (© 2020 Wiley Periodicals LLC.)

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.

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.

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.

Background: Social support has been identified as a buffering or intervening variable in stressful life events. Research has demonstrated that greater social support is associated with better mental health in multiple sclerosis (MS), but little is known about its links to specific aspects of mental health. We therefore investigated if and how perceived social support modulates depression, anxiety and fatigue in patients with MS., Methods: We recruited 112 patients with MS from three French hospitals and administered a demographic and clinic interview, and self-report measures of perceived social support (Multidimensional Scale of Perceived Social Support), depression and anxiety (Hospital Anxiety and Depression Scale), and fatigue (Fatigue Severity Scale). We then analyzed the relationships between these domains using path analysis., Results: The causal path model provided an excellent fit for the data (χ 2  = 9.8, p = .778, standardized root mean square residual = 0.043, comparative fit index = 1.00). Results indicated that the level of social support from friends is a predictor of anxiety symptomatology. Thus, anxiety may have both a direct and an indirect impact on fatigue and depression levels., Conclusions: This study highlights the important roles played by perceived social support and anxiety in MS. These should be key pharmacological and non-pharmacological targets for optimizing patient care. (NCT 02-880-553)., (Copyright © 2018 Elsevier B.V. All rights reserved.)

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., (© 2018 Australian College of Mental Health Nurses Inc.)

Objectives: Symptoms in autism, a neurodevelopmental disorder, appear at an early age. Research consensus shows impairments in communication and especially joint attention, defined as the capacity to intentionally share attention between two persons or a person and an object. Recent studies in autism spectrum disorder (ASD) focus on infants' processes associated to joint attention, such as visual and auditive regulation, attentional engagement and social motivation. The present research's objective is to examine the role of these factors in joint attention., Methods: A group of 50 children with ASD, aged 21 to 50 months, were selected. They went through a clinical assessment which included evaluations of development and symptoms, a scale measuring auditive and visual regulation; a grid elaborated to quantify motivation behavior towards a person and an object in two different engagement states: alone or with an adult and finally a measure of the child's capacity to disengage from an object. A joint attention score was obtained with the Early Communication Scale for Children (ECSC). Results show: (1) an effect of visual regulation on joint attention, (2) a relation between visual regulation and joint attention partially mediated by motivation. Our results clarify the nature of the relationship between visual regulation and joint attention, with motivation modulating visual regulation in its relation to joint attention, (3) a relation between attentional disengagement and joint attention. Visual regulation, social and non-social motivation and attentional disengagement are all associated to joint attention. A clinical measure of motivation behaviors for children with ASD has been created and can be applied in clinical settings, as it is adapted to young children with ASD symptomatology and enriches diagnosis., Conclusions: Statistical analyses of our clinical observations suggest a mediation model highlighting the influence of motivation in the mechanisms underlying joint attention. The measurement of processes and mechanisms associated with social communicative skills at a very early age, here motivation and attentional disengagement processes associated with joint attention, help include these factors in early intervention programs., (Copyright © 2017 L'Encéphale, Paris. Published by Elsevier Masson SAS. All rights reserved.)

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.

Background: Neurodevelopmental impairments have frequently been described in children and adolescents with dextro-transposition of the great arteries (d-TGA). The arterial switch operation (ASO) to correct d-TGA has been used for more than 30 years, and more than 90% of these patients now reach adulthood. However, very little is known about their long-term functional outcomes. The present study investigated neurocognitive outcomes and the prevalence of psychiatric disorders in adults with d-TGA corrected by ASO., Methods: Neurocognitive functioning was comprehensively assessed (general intellectual functioning, language, attention, visual-spatial skills, executive functions, memory) in 67 adults (59.7% men) with d-TGA (aged 22.9 ± 3.4 years) and in 43 healthy individuals. The prevalence of psychiatric disorders, including depression and anxiety, was evaluated using a structured diagnostic interview. We also analyzed patient- and operative-related risk factors associated with outcomes., Results: Compared with the general population and the control group, adults with d-TGA displayed reduced performance in tasks assessing attention, visual-spatial skills, executive functions, and memory (all p < 0.05). Compared with controls, patients had also a higher lifetime prevalence of depression (43% vs 19%, p = 0.008) and anxiety disorders (54% vs 33%, p = 0.025). Predictors of long-term outcomes included gender and parental socioeconomic and educational status (all p < 0.05)., Conclusions: Adults who have undergone a neonatal ASO to correct d-TGA have an increased risk of cognitive deficits and psychiatric disorders. Evaluation of long-term neuropsychological and psychosocial outcomes in early adulthood is a crucial step to anticipate for adapted treatment strategies in adults with congenital heart disease., (Copyright © 2018 The Society of Thoracic Surgeons. Published by Elsevier Inc. All rights reserved.)