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.

Transitioning from pediatric to adult healthcare with an inborn error of immunity: a qualitative study of the lived experience of youths and their families.

Introduction: Transition from pediatric to adult healthcare is a multifaceted and consequential process with important health implications for youth. Although research on transition has grown significantly, research on transition for patients living with an inborn error of immunity (IEI) is scarce. We undertook a qualitative study to better understand the perspectives of youths and parents in an outpatient immunology clinic. Methdos: Semi-structured interviews were conducted with 9 youths, 6 parents and 5 clinicians, all recruited from the same clinic. All youths recently transferred to adult care with or without an established diagnosis of IEI. Interviews were transcribed verbatim and thematic analysis was conducted. Two sets of themes were generated. The first set captured the positive and negative aspects experienced during transition, as well as recommendations to facilitate the process. The second set focused on key topics discussed in the interviews that were merged into overarching themes. Results: Perspectives of participants were clustered into 6 overarching themes: (1) lack of knowledge about IEIs; (2) scattered transitions; (3) changing healthcare teams; (4) approaching an unknown environment; (5) transitioning to adulthood; (6) assuming responsibility for the management of the condition. Overall, the challenges encountered with respect to these themes had profound clinical and humanistic implications for patients such as generating significant distress. Discussion: We discuss the unique challenges of the youths in our study in comparison to common problems reported by youths with chronic illness in the broader transition literature (for example: the change of healthcare team, the lack of information about the transition process and navigating the adult care system, growth towards self-management and the co-occurring developmental transition to adulthood). There is an urgency to attend to the specific problems created by the rarity of IEIs and related lack of knowledge about them as well as the need for multidisciplinary cross-clinic care during transition and beyond.

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.

Fathers Matter: Enhancing Healthcare Experiences Among Fathers of Children With Developmental Disabilities.

Background: Being a parent of a child with a developmental disability (DD; e. g., cerebral palsy, autism) comes with great challenges and apprehensions. Mothers and fathers of children with DD are experiencing heightened levels of psychological distress, physical health problems, financial difficulties, social isolation, and struggles with respect to traditional parenting roles. In relation to the latter, the involvement of fathers in caregiving in today's society is increasing and is highlighted by its importance and positive contribution to the development of their children. However, fathers of children with DD report feeling excluded and marginalized by healthcare providers (HCPs) when arranging for and getting involved in healthcare services for their children. Currently, there is limited evidence as to what factors influence those experiences. We aimed to explore barriers to and facilitators of positive and empowering healthcare experiences, from the perspectives of fathers of children with DD and HCPs. Methods: A mixed-method approach, such as quantitative (survey) and qualitative (semi-structured interview) strategies, was used. Participants were fathers of children with DD and HCPs working in childhood disability. Data analysis consisted of using descriptive statistics and an inductive-thematic analysis of emergent themes. Results: Fathers (n = 7) and HCPs (n = 13, 6 disciplines) participated. The fathers indicated that while they were moderate to very much satisfied with their interactions with HCPs, they reported that HCPs were only sometimes attentive to them during interactions. Fathers also revealed that positive interactions with HCPs in relation to their children had multiple benefits. Several themes related to barriers and facilitators of optimal interactions and parent-professional relationships emerged. These included session factors (time, attention), personal factors (knowledge of the condition, child and healthcare system, acceptance vs. denial, previous experiences, culture, stereotypes, pre-existing beliefs, stress levels, working schedule), and family dynamics. The participants offered several insights into the different strategies that can be implemented to promote optimal interactions between fathers and HCPs. Conclusion: We identified several barriers, facilitators, and improvement strategies for optimal interactions and enhanced parent-professional relationships from the perspectives of fathers and HCPs. These can be integrated by existing clinical settings in efforts to enhance current clinical practices and improve child- and parent-related outcomes.

Developing a Canadian framework for social determinants of health and well-being among children with neurodisabilities and their families: an ecosocial perspective.

PURPOSE: Social Determinants of Health is a conceptual framework typically used to understand patterns of health and ill-health at the population level. Its applicability to children and youth who already have a health condition, in this case, a neurodisability, is not well understood, particularly when the "health" component of that framework is extended to include more pluralistic notions of well-being. The purpose of this study was to address this challenge and to develop an ecosocial framework that is conceptually integrative and meaningful to children and youth with neurodisabilities and their families. METHODS: Drawing on a critical literature review, a conceptual analysis approach, and a secondary analysis of a compendium of 36 social determinants of health models, we critically analysed how these models map onto the context of childhood neurodisability and identified key conceptual and empirical challenges. The emerging framework was further validated through iterative stakeholder consultation with parents, self-advocates, researchers, practitioners, community leaders, and decision-makers. RESULTS: The review and consultation process generated The Canadian Framework for Social Determinants of Health and Well-being among Children with Neurodisabilities and their Families. This new framework consists of two hemispheres encompassing explanatory (or observational) and action-oriented (or transformational) components relating to social determinants of health and well-being and living a daily life of quality in childhood neurodisability. CONCLUSION: The proposed framework provides a roadmap for practitioners, policy-makers, and researchers as well as activists, families, and communities, to reflect on both social determinants and social change processes that shape the health, well-being, and everyday lives of children and youth with neurodisabilities and their families.IMPLICATIONS FOR REHABILITATIONSocial Determinants of Health provides a conceptual framework for understanding the social causes and consequences of health and ill-health at the population level.In childhood neurodisability, however, it is important to consider pluralistic notions of "well-being" and living a daily "life of quality" that may relate, but are not limited, to health.The Canadian Framework for Social Determinants of Health and Well-being among Children with Neurodisabilities and their Families comprises an explanatory hemisphere of social determinants, factors, and contingencies, and an action-oriented hemisphere that identifies different forms and levels of mobilization that can guide rehabilitation practice to achieve social change in the lives of children, youth, and their families.Using an ecosocial perspective, this framework provides a roadmap for future research and policy development that is relevant to children and families as well as to current perspectives in rehabilitation, social and health justice, and childhood, disability, and neurodiversity rights.

Contextualized Autonomy in Transitional Care for Youth With Neurologic Conditions: The Role of the Pediatric Neurologist.

Youth with neurologic conditions experience multiple life transitions. The transfer from pediatric to adult health care systems exemplifies one such complex and multifaceted transition that occurs in parallel with developmental, legal, and social changes that may influence the roles and responsibilities of youth and their caregivers. As a result, ethical situations, questions, and challenges may surface in transition care to which pediatric neurologists may be confronted. In this article, we focus on the topic of autonomy and situations that may arise in transition care in the context of pediatric neurology. Building from a clinical case, we present the concept of contextualized autonomy to work through the questions that arise in the case and propose ways of thinking through those challenging situations in transition care.

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.

(Unpacking) father involvement in the context of childhood neurodisability research: a scoping review.

BACKGROUND: In the past thirty years, theoretical and empirical scholarship on father involvement has emerged and firmly established itself. Efforts to define, measure, and explore outcomes related to father involvement in the context of childhood neurodisability are evident but less well established. The purpose of this study was to systematically map empirical studies on father involvement in the context of childhood neurodisability in order to delineate the current state of research and to highlight profitable directions for future research. METHODS: A rigorous scoping review method was used to select and analyze empirical studies published between the years 1988 and 2016 in order to systematically map research findings about fathers' affective, behavioral, and cognitive involvement. RESULTS: Fifty-four (n = 54) studies (quantitative n = 47 and qualitative n = 7) met inclusion criteria associated with three levels of review. Four main trends emerged: (a) paternal "stress" is a main concept of interest; (b) comparison of mothers and fathers on affective and cognitive involvement; (c) lack of a focus on fathers' behavioral involvement, and (d) the absence of research designs that allow for examination of fathers' unique perspectives. CONCLUSIONS: Fathers are generally underrepresented in research in the context of childhood neurodisability. While there is a lack of depth in this area of research, granular analyses revealed important and unique differences about fathers' parenting experiences. Recommendations for research and practice are provided. Implications for rehabilitation Fathers are underrepresented in the parenting in childhood neurodisability literature. Fathers who report feeling competent in parenting and connected to their child also report less parenting distress and more satisfaction in their couple relationship and family environment. Rehabilitation and allied health professionals should include fathers in parenting/family assessments. Manifestation of distress may differ among family members. Rehabilitation and allied health professionals should offer individualized care that is attuned to the needs of all family members.

Protocol for a scoping review about ethics in transition programmes for adolescents and young adults with neurodisabilities.

INTRODUCTION: As adolescents with neurodisabilities near adulthood, they and their caregivers will face the challenge of transferring from paediatric to adult healthcare systems. Despite the growing number of programmes designed to support healthcare transitions, little is known about practices that result in positive outcomes or how ethical issues are addressed. The objective of this review is to identify and document the ethical principles that may be embedded in the vision of transitional care programmes and to map ethical issues encountered in transitional care as well as the strategies employed to recognise and address these ethical issues. METHOD AND ANALYSIS: We will document hidden and explicit ethical principles and issues from empirical studies on transition programmes for youth with neurodisabilities. An initial framework developed through a content extraction strategy will serve as a point of departure for data analysis and will be iteratively refined through our analytic process and with feedback from our stakeholders, including youth with neurodisabilities and their families. Findings will then be shared in different formats with health and social services professionals, healthcare decision and policymakers. DISSEMINATION: Scoping review results will be shared at key conferences and disseminated in peer-reviewed publications as well as plain language summaries with stakeholders and the general public. Opportunities will be sought to discuss this project and its preliminary findings with partners in the paediatric, adult healthcare and rehabilitation communities comprising young people with neurodisabilities, their families, clinicians, programme managers and researchers.

A Relational Ethics Framework for Advancing Practice with Children with Complex Health Care Needs and Their Parents.

Children with complex health care needs are an emerging population that commonly requires long-term supportive services. A growing body of evidence has highlighted that these children and their families experience significant challenges. Many of these challenges involve ethical concerns that have been under-recognized. In this article, we (a) outline ethical concerns that arise in clinical practice with children with complex health care needs and their families (e.g.: exclusion of children's voices in discussions and decisions that affect them; difficulties in defining their best interests; clashes across the array of social roles that parents manage; limited recognition of the ethical significance of parents' and other family members' interests) and (b) propose a relational ethics framework for addressing these concerns. Our framework draws on hermeneutical interpretation and moral experience as foundational orientations, recognizing children with complex health care needs as relationally embedded agents, who while dependent and entitled to protection, are simultaneously agential. Children's and parents' interests are relationally intertwined and interdependent. Families are recognized as significant social microcosms for the cultivation and transmission of intergenerational cultural heritage, narratives, and outlooks. We describe strategies for (a) conducting a relational ethics inquiry and (b) reconciliation of identified ethical concerns through a process of rapprochement. A relational ethics framework can promote clinical practices that are ethically attuned to the complexity of this population's needs.

Assessment of the family environment in pediatric neurodisability: a state-of-the-art review.

The importance of the family environment for the development of children with neurodisabilities is undisputed. The objective of this study is to describe how family environment has been measured in research on families of children with neurodisabilities, in order to support researchers and clinicians to select appropriate methods for use. A three-step approach was used and 13 measures of family environment were identified within 77 studies. Five measures were used most commonly across a majority of studies (n=50). The measures varied considerably in terms of theoretical background, content, subscales, and populations for which they were developed and validated. These measures were used with considerable variability between studies and with a limited range of research respondents, most typically the child's mother. Challenges, opportunities, and suggestions on how to improve the application of family environment measures in research are discussed.

Parents' perspectives on the quality of life of adolescents with cerebral palsy: trajectory, choices and hope.

INTRODUCTION: Quality of life (QoL) is an important outcome of health interventions for children and youth with cerebral palsy (CP). When planning interventions it is fundamental to understand what constitutes a good QoL, a subjective construct, and what factors are important to consider from both parents' and children's perspectives. METHODS: We used a grounded theory methodology to explore parents' perspectives on the factors that are important for the QoL of their adolescents with CP. Fourteen parents were interviewed using a purposeful sampling strategy, followed by theoretical sampling until saturation was reached. RESULTS: Parents reflected on several important aspects of their children's QoL. In particular, they described how their trajectories as parents of a child with a disability have contributed to their adolescents' current well-being. Over time, parents' hopes for a cure were transformed into hopes for their child's happiness. This trajectory was influenced by the adolescents' intrinsic characteristics and the parents' strategies to overcome challenges and was informed by the parents' and their children's ability to make choices in pursuit of their preferences. CONCLUSIONS: Adolescents' and parents' accounts should be considered when planning interventions for adolescents with disabilities. It is important to consider parents' personal characteristics, experiences and the strategies that have been proven to be efficacious in improving their children's QoL and to understand their need to make choices relating to participation and accessibility in order to promote QoL for this at-risk population. Implications for Rehabilitation Parents' trajectory on raising a child with a disability is important for understanding adolescents' QoL. Parents' characteristics and environmental factors influence adolescents' well-being. Hope and choice experiences by parents of children with CP are important for their children's QoL. Transition from pediatric to adult services are required to address disability-related aspects as well as adolescent needs for intimacy, sexuality and planning for their future during adolescence.